Since 2000 I have had the symptoms of MS. It wasnt until 2016 I finally got told I had Primary Progressive MS.
THIS IS NOT the normal MS, that is usually on set with RRMS (relapsing remitting) You have days when you are good and then bad relapses. With PPMS I dont have that. All the time in different guises and issues I suffer something. In a way it is better as it is actually slower progression. It is actually classed as RARE in this country the UK, with only about 1500 diagnosed officially with it, I am one of them. THERE are about 130,000 RRMS.
I have decided to write this as something happened in the last few days, which really got to me. it made me a little angry.
A comment made from someone who should have better judgement. The comment was the way this person perceived my illness. Oh you have had MS since 2000, I would think you would be more disabled by now………..REALLY.
You dont think going from a healthy 40 something with an amazing job and life and ending up in 2023, living house bound and barely walking isnt enough progression for me to deal with. The fact I have gone from a self assured strong women to a meek person who cant cope with simple things without wanting to fall apart. The fact i had to stop driving years back when i simply forgot where my car was. The fact one minute i am walking my dog, then using a scooter, then a wheelchair and walks get shorter and shorter until i have to get a dog walker.
I dont have an oven as i cant use one for fear of burning myself. the last time i used one was when i took FOUR HOT BAKED potatoes out of the oven with no protection. The fact that one simple shower wipes me out for days. I struggle everyday to get dressed but determined to keep doing it myself. TYPING gobblygook and having to read it again and again.
MS IS A SNOWFLAKE disease everyone is different. my friend was 73 when she passed away sadly with bone cancer. six months before she had that she was flying to europe in her work. she had RRMS but coped well then bone cancer hit her and she ended up in a bed with full care until she finally and thankfully passed away in terrible pain.
Non of our lives have guarantees. We have MS, we live with it, we adapt with it, but dont minimilase how it affects us. this is worse for our mental health as we start to question if we even have it or that we must be weak and sniffly disabled people who dont have lives and lavish pity on to us.
I have never been good at maths, but i can takeaway the things MS has subtracted from my body. MOBILITY COGNITIVE including uncontrollable emotions. MUSCULAR VISION BLADDER AND BOWEL MOOD SWINGS DEPRESSION FATIGUE ACTUALLY IT ALSO HAS ADDED THINGS. the love of wildlife, music, writing, meeting lovely new people, calmness, and relaxation skills. being expert at adapting and organising my life, switching off negative stuff and just living for the moment. Ah the joys of silence lol.
ONE thing it hasnt taken away from me at the moment is DETERMINATION to live with this disease the best way I can SO please therefore stop treating me with patronising and unncessary comments. Hell just walk in my shoes for a DAY.
My survivial technigueis: I adapt my life around my limitations i am disabled there is no way out of that. It is what it is.
If I lost a leg i would adapt to living without it, or have a false one fitted and live with that. I think having MS the first thing we have to ACCEPT is we are disabled, and are lives will change. I embrace each change in my life and deal with it so why cant YOU accept who I am as I am now, and stick your perceptions where the sun dont shine.
Who would think on Sunday 6th March my life would change so much in a week. Saturday 5th i was sat at home minding my own business watching the birds in the garden, cuddling up to my lucy dog and watching the mental antics of my cat Leo.
This morning i awake to groaning and moaning dark and dismissal rooftops and the heat which is enough to knock you backwards and a reminder of older times in the war oh so it seems with the dank and grey and dirty stained walls, dusty windows, and floor tiles with cracks and bits missing.
I wake up to a lovely cheerful face, Rosemary one of the nurses she has a great and happy disposition you cant help but smile at. SHE takes away my commode to issue me with a new one, complains about the heat (she is from Africa lol), and carries on attending to the older and more sick patients as it should be. I think there are six of us. We are in the red zone area. Just diagnosed so starting our covid journeys and self isolation. Funny that I thought our prime minister had stopped all of that how wrong was I.
I am stuck here as i had a heart attack and they were backed up with angiograms so by the time i could have one our ward had gone on lock down, then yeh i got the dreaded virus which I had kept away from for 2 years even denying myself companionship in order to keep myself safe. Stupidly i thought being taken to hospital i would be safe how wrong was I.
What is so much more concerning is that my ward had only just re-opened from a previous outbreak……………does that mean the virus can hide well i am not surprised if it can as my table has strips of wood and underneath them where there is no seal it was black gunge………the black of covid perhaps?
My MS is going mad with the heat, i still need to open my bowels. I am writing this watching the nurses attend to the sicker and older patients and think what the hell did i do to get this. Being isolated with a load of sick people. I even put my mask on lol i know but still do i really want anymore virus germs. i am by the window which is open so have lovely free flowing air on me. A bonus for sure.
The situation reminds me a bit of Cancer Ward by Aleksandr Solzhenitsyn where everyone is in one ward and you can learn from each other what brought you there how did the system fail us and how could this happen really in this day and age. The ward is testament to the failings of our system as we are assured everything is in place for our safety but it cant be can it. How come people are getting infected when they have never been exposed before. Can the establishment blame it all on visitors bringing it in or failing tests no i dont think so. Virus thrive and hide in many places, cleaning has to be extra; then extra, disinfectant used for each space. I have laid in the cardiology ward ward watching the cleaner who just drags along a dirty fluffy floor mop from one place to the next a wash mop so black looking it makes your toes curl watching him. Are the staff being as vigilant as they should be, why is it the mortal man has to always be blamed for others failings?
I have done my duty and acted accordingly to keep me safe as the government asked me. I have had my 2 vaccines. The 3rd one was booked and they never showed up TWICE to do it. But it would not have made a difference to my outcome as i know as many with covid now with 3 vaccines then non.
Its a known fact ventilation is the key to stopping the virus and space and ventilation, so why am I sitting in an oven so hot you cant even touch the radiator, the nurses who mainly come from Africa and Asia are all too hot it cant be a good work atmosphere for them either can it.
So i spent my first night i slept reasonably ok. I was woken up at 1.30 by lights going on as patients needed attention, then 2.30 then i slept until 5am which is not actually bad for me. But I feel rotten as my MS is in free fall with the heat.
My symptoms are a fizzy tingly nose like i have hay fever. My temp is fine, and my BP is 116/67 pulse 61, and oxy 100. I have never woken up before to a BP with that measurement.
The nurses are working away quickly ad efficiently dealing with each patient quietly and quickly.
I suppose one good thing i have on suite facilities with my commode, a view of the rooftops of a busy gloucester and oh yes T.V. what more could anyone ask for really.
I am going to sign off now, so night one is done.
I wonder if i will make it to the release…………………………………………green light.
my new homeradiator right by my bed on full blastbottom of radiatormy rollator i am sat in my on suiteview from my window
DAY 2. 15.41. Have you ever heard the expression “COOKING ON GAS”? OH my goodness Gloucester Royal are wasting a ton of money on energy costs. I am not being stupid or am I, but its March now isnt it? The weather isnt too bad, so why do we need to run a radiator full length of the ward on ALL DAY running so hot you cant touch it, and the floor under is also hot too. I lay here imagining all these little covid viruses running around having a sunbath lol and infiltrating our systems whilst we lay ill in bed, why not add a bit more isnt it. I always thought it was a known fact that viruses love the heat and they multiple without venilation so why is it GRH are keeping the wards especailly in the Towers so hot? This is a designated covid ward so come on turn the heat down it also just drives up body temperatures surely? We need to be saving our planet and not wasting valuable resources with too much gas use. I just wish i could take the temperature to just show how hot it is in this ward. Come on GRH do the research make it a better more comfortable experience. Its hard enough kind of being ostracised to a ward dedicated to a virus that most of us have tried hard to avoid.
My temp in the cardio ward nice clean place with air vents was lovely and i was only 36.1. Today because I am cooking on gas this is 37.1. Just that degree is causing havoc with my MS, and the nurses are not comfortable either.
I did notice that most of the patients are elderely in this ward and the heat seems to be making them sleep all day, so is this a clever ruse to keep us quiet so the nurses dont have to rush around too much? You need less staff that way. Hummmmmm well I feel poopy so will sign off for now but hopefully will continue in the morning. Stay safe out there ok anyone can be carrying this virus so keep vigilent.
I had no real symptoms just a bit of a scratchy throat the night before, and I sneezed once but I do anyway as I drink ginger beer and it does that. That is all. At the moment I am not sure if my pain is from my MS nervous system having a melt down with the heat or what. I have had it like this before. Anyway dont ignore runny nose etc get a test as it shocked me mine was positive, when one of the patients was sat for days opposite me snotty and coughing and her tests were always negative go figure………(scratch head lol)
How come some people with loads of symptoms have negative tests and Asympotmatic end up with positive?
Hopefully will see you tomorrow fingers crossed. Oh no new lady fast asleep mouth open snoring it could be an interesting night lol.
Our lovely radiator full on.
Radiator full length of room on full blast.
14th March day 3.
yesterday my temperature went up a bit towards evening i think down to the heat it was 36.7 in the morning but last night 38.1. I slept ok though i was awoken by nurse at 1.00a.m. who was dealing with one of the older patients, but i went back to sleep until 5.30.
I can honestly say I feel like I have a cold this morning, my nose is a bit runny and I feel achey. So not sure if this is the start of it. I had a covid test this morning, i cant see it being negative. I have heard from friends who have had it that it can take upto 10 days to get clear tests, gosh I hope not as i want to go home. I cant have my angiogram until its clear.
Yesterday was really sad as one of our patients isnt doing well, she is elderly diabetic and refused to eat or drink or even take a tablet. I was listening to the nurse trying to coax her to eat but she was having non of it. She is in terrible pain and when they try to move her she cries it is heartbreaking I just want to go to her and cuddle her. I now have had first hand expereince of how covid affects the elderey its not good, so keep your parents safe.
This virus is now affecting younger people as well as I have seen a few in here so no one is now safe from it. Yes many get it mild but not everyone does, and mild to someone maybe devistating to someone else.
Its still too hot in here if anything if possible it is hotter.
I have to say that the NHS nurses are amazing so kind and they work really hard too. I said to one yesterday dont you worry about catching it she said no, and so far never has. they always wear masks but still they are breathing in an atmosphere of virus, i admire them putting their lives on the line, to keep us well. They are truly amazing and i applaude them.
I am sure it can be a thankless job. I for one clap for them.
clap for our carers.
Day 4. 15th March.
They come they go its like being let out of prison when you see the joy on the faces of the escapees. WE ARE FREEEEEEEEEEE!!!!
Sadly a few hours later another detainee arrives bundled up feeling sorry for themselves bewildered what is going to happen to them. Some are elderely with dementia they dont know whats happening. Our new lady Joy who came yesterday is so sweet but when she wakes you up at 2am in the morning asking you what time it is lol, and where is her daughter not so much. It must be hard for the nurses to have to deal with this, as they are exhausting. The times they had to rescue her walking out of the ward she may be old but boy she is nifty lol. She can run like an unbridled filly lol. I watched the nurse chase after her as she was hot footing it out to find her family i wish i could walk that fast. She came in here after a fall then got covid oh dear “SIGHS” that is the 3rd one since i came in. Just what can i say how can it be happening?
As I ponder this mystery I have race horsing going on in one ear on our telly on the wall, and I think the sounds of Emmerdale coming from the outer wards lol. Its manic you need to rest people tell me yes of course I do so i come to hospital for just that oh I do like a joke. Its manic all the time. I am lying alseep at night wake up by what I can only describe a handsome face I think from Maori decent, as i woke fully he called my name and i could see the tattoo all down one arm, he said he was there to take bloods. 2.30 in the morning seriously? He was not too old with a rugged handsome face I immediately thought of New Zealand and his home what was he doing here so far away from where he was born (well I assumed). He had a distinctive tatoo i wonder what story it was telling, then I shook myself awake looking at him, seriously bloods now. Yes something to do with I.V. antibiotics I had earlier in the day. It didnt take long he soon found a good vein and I was able to go back to sleep it was about 3am by then.
I could see a lovely tatoo down one arm he was fit looking lol but sadly dressed. Its the drugs I am allowed tee hee
Mrs trim, Mrs trim, I was woken by a male voice I have come to do your BP I kind of sat up and there was the male staff nurse by me. They were very short staffed so i think he was slumming it. My BP was lower then it had been but nothing to worry about, it was just gone 5.30, and oh no the wanderer was awake, so no more sleep it was denied me.
So I sat up and sorted myself out and did some emailing to friends in the states. Soon it was ward rounds and I was feeling like poop.
I said to the nurse I wasnt sure if it was the antibiotics, the MS, Covid, or the water infection but boy I felt like poop. The doctor was coming later so I just rested until she turned up. She arrives with her laky who pushes a computer and inputs notes whilst she is talking.
Doctor with assitant
She asked how I felt well I told her not well she said it was down to the new heart meds they were driving my blood pressure down too much and would be making me feel like that, so they had taken them out. So now I assume I will get used to another one. I told her about having bloods done at 2.30 “WHAT”, she said why did they do that we only needed it doing in the morning lol. Well really perhaps 2.30 is morning for the vampire blood bank. Anyway as an update she said basically once they get the blood pressure stablised they will be very happy my other stats are good. I mentioned about being told to walk a lot and she said no, for now do what you can as you will be tired with the medication, the MS and the covid. SO that was a relief.
New stats were good 133/60, pulse 60, oxy 100, and temp finally 36.1. Hoorah.
Consensus. COVID.
I have asked about this how did you feel in the ward. Well so far most of the people in here didnt even have symptoms. They were found out as they were in hosptial for something else, so having routine tests before tests, then it would be positive and because they are under the care of the hospita;l stay within the care until the are clear and can go back to their wards or homes.
Mostly over a few days they have had runny nose, a bit sratchy throat and some go on to develop coughs. One thing they all agree on was pain. achey really bad some would cry at night for paracetamol. The achey pain seemed to last 2 days as is the case with myself. My trouble is i dont know the difference between the pain of the Covid or the pain of my MS. Being well does not exclude you from being covid free as i was shocked when mine came back positive you could have literally knocked me down with a feather.
its 3pm now and i am fading so will sign this off and hope I can get this ryme out of my head.
Ring-a-ring-a-rosies A pocket full of posies A tissue, a tissue We all fall down
The king has sent his daughter To fetch a pail of water A tissue, a tissue We all fall down
The robin on the steeple Is singing to the people A tissue, a tissue We all fall down
The wedding bells are ringing The boys and girls are singing A tissue, a tissue We all fall down
ATCHOOOOOOO stay safe.
Day 5 and 6 – 16th & 17th
what a night really Wednesday. I was zonked out until 3.58 woken by the new lady stood over me trying to get my attention and nurses chasing after her. she had a stick and they were trying to get her to calm down and she got angry she could be dangerous i suppose. I feel sorry for her she shouldnt be in here but in a special ward. she has needs and the nurses dont have time to chase after her. then i just got to sleep again and woken for blood pressure etc all good and temp normal. then off she went again walking across the room trying to steel a ladies banana. now let me get this right this women has covid and is spreading it around touching this ladies banana, the tables and things its not exactly healthy is it. so then i am just settling to chat and the blood man came again it was like never ending.
I must admit I had a total melt down when the lady opposite me was allowed to go home she came in same time as me. She still had a small clot in her leg but they were releasing her even though she had not had a free test.
I cant tell you my lovely readers how I felt. I was hot, tired, in pain and dispirited. I couldnt see my family and I was trapped. I just lost it, cried; my heart was hurting I felt so lonely and alone was I to ever get out of this hot box and go home. My heart ached for my little dog lucy missing her so much, missing my family normalcy and she was going home because her daughter was a nurse.
my lovely lucy with my grandson she must be so confused.
I had the ward assistant guy come to see me. I told him, its too hot for me in here I just feel ill, hot and depressed its making my MS hurt so bad I cant bare the pain, just miss my family my pets no one is telling me when my time is up to leave this place. He came back about ten minutes later. Said to me if you dont test clear day six; you will have a release on Monday and go back to the cardio ward then have your angiogram. Hopefully then my time should be over and I can go home to my pets and family and normal life. If it will ever be normal again.
At this point he leant against the radiator and jumped back quickly; lol he had scolded his bottom…………….should I have stifed my snigger but really poor old me has been suffering with this heat for days its dangerous having radiators red hot.
Well now 2 hours later suddenly it was all action going on, as he came back and a nurse had a cooling fan for me, then I was told they were moving me to a cooler bay so the rest of my day 5 was moving and resettling elsewhere in the ward but cooler bay. BLISS. Its still warm but you could feel the cool air from the corridor as well. Shame the decor is not conducive to a happy place.
wall by the side of my bed.
Day 6th – 17th March. I woke up in my new bay. It was super cool, yes I know COOL. Hum sleep; well would have been ok but as luck would have it my new opposite neighbour a sweet 93 year I have dubbed speedy Gonzale as boy she can move fast lol, was up and down from about 2a.m. chatting to herself and calling for someone. Eventually after using my lovely trusty commode I fell alseep until 6a.m. to be woken again by the blood man who actually was running this bay last night. I learnt a little more about him, he has 2 children and has a need for things to be tidy and in place every table was wiped clean no rubbish or bits allowed, it was like an Army inspection lol, but I passed muster as all my rubbish bits are stored in a rubbish bag, my table is kept tidy and clean so let the games begin to see who can outmatch each other with the need for tidiness lol. I did get a gold star for having a tidy table lol.
I laugh as using pigeons as illustration for tidiness kind of defeats an object if one has kept them at any time.
Day 6 is my day for a start to walk more and get better. I still feel as though I am looking through a fog as this is caused by very strong antibiotics and a change in my blood pressure tablets.
As to covid. Well for me my bladder and MS is more an issue, but covid for me is like hayfever, with a few sneezes and the need to blow my nose. My temperature has been down 3 days. The temperature though could have been down to a water infection and the heat not sure. What I would love right now is some vaseline for my nose and bigger tissues, but lets see how it goes today.
Release date either way is Monday 21st March. ACT HAPPY DAY.
We can choose to live righteously and be happy. The Dalai Lama once said that happiness is created from our actions, not something ready-made. Life will certainly have times when we feel pressured, stressed, even in a state of “helplessness” when we cannot find joy in what we are doing. However, creating a habit of positive thinking and action can bring happiness, and you can absolutely strive to be happy in life. Act Happy Day is celebrated every year on every 3rd Monday in March, celebrated to encourage people to act as if you feel happy, joyful and fulfilled. Besides, Act Happy Day also highlights the benefits of happiness, humor, laughter for each of us.
“Happiness is the ultimate goal of human existence, the thought and purpose of each individual’s life.”
The Greek philosopher Aristotle said these words more than 2,000 years ago, and they still hold true today. Happiness is a form of energy that describes the experience of positive emotions. Often happiness is equated with joy, contentment, and contentment. One striking study shows that everyone tend to want to be happy and being happy doesn’t just make you feel better – it actually offers a host of potential health benefits………………….
ACT HAPPY DAY 21ST MARCH.
DAY 7 and 8. 18th-19th March
Sad day for me as my neighbour Sue was allowed to leave even though she was only day 7 and didnt require a test for GO. So she had no idea or not if she was clear of covid or not. I have noted a lot of people test at day 7 and still show POSITIVE, so she was worried actually about going home and still being positive for covid for her familys sake. A nurse aid gave some sort of weird explanation why one doesnt need to do this anymore which made no sense to either of us. I firmly believe she was only going home as they are desperate for beds, and she has family who can care for her. The second lady a sweet Asian who wasnt in long and had a horrible cough was also released early, again family took her home. Both of these patients were still on heavy medication, still suffering affects of their covid and had no proof they were clear. Perhaps I am being dense here so if they are still positive they are going back into the community with it to spread it more. Perhaps someone reading this can explain it to me?
I asked about my own circumstances i have had it mild compared, I was told I am different as my next stage is to go back to cardio ward, so now have to have completed my 10 days isolation hell before for me; its Let’s Go………
It was a sad day as Sue, was amusing with her views on life, and chatting about her erant sons lol, but it broke up the days. Now I have no idea who the new people are they all cough that is one constant not quite so much in their favour.
Observation of covid: it may be mild yes for some but mild for others can be devistating. One thing that is noticeable from the few they all do have underlying illnesses, Sue was very asthmatic. Hers started with a breathing issue not addressed by her ventolin, she also had COPD. The other lady was diabetic, we have a few in here diabetic. Sue was issued a neboliser but seemed to need it as much when she was leaving as when she first came. I really am worried for me I see 2 people going home but neither are fully well either. Very worrying isnt it are we this stretched we have to send out the old to make room for new before the old are even new again? Kind of scary for me to be honest.
Doctors update: I met another doctor yesterday on rounds his name was Charlie, very kind of laid back relaxed leaning against the wall to talk to me about what was happening. I asked him straight out what is going on and why must I stay in hospital, no one has explained it to me.
He said well what do you know? Not much just that I still have to get an angiegram and i am going back to cardio ward on Monday. He said yes we would prefer you to have the angiegram, as the ECG clearly showed you have a blocked artery and we need to find out where, how bad and hopefully clear it. If we let you home before we do it ………….consequences could be pretty bad. Now he also said there was a busy queue for these, so well looking at him straight in the eye quite succintly I said your not telling me much really so let me get this straight I could go to cardio and use it as a waiting room and the point is just how long is the queue for the appointment?
How long is the queue?
Now dont try to bullshit me Charlie I am not stupid nor am I dense, but no way will I be stuck in cardio ward waiting for an appointment which was my space already only reason why I didnt get it is because of a PCR stick showing I had covid. So the queue would have moved up by one wouldnt it. Of course I was polite to him and said look ok, I will comprimise if I have not got an appointment by the Friday that I can happily work with, then I will have to go home, for my own mental health no chance can I just sit around all day waiting when I have my little family to care for and I miss. He said they worry it might happen again.
So are you saying to me, that I definately had a heart attack? He looked at me, oh errm let me go check your blood results……………….he came back with a yellow form and some notes and said yes you did, and the consensus is we need to find out why. OK readers, tell me this why on earth didnt they just sit me down from the get go and tell me this in the first place. They could have used plain english. Mrs Trim you had a heart attack, we found out a possible reason for it, we want you safe etc so we can stop it happening again………….! Now really how hard would that have been?
So what would you do? Wait and miss your home which is causing you enormous stress or risk it and go home?
Answers on a postcode
Interesting I have just met the one of the new occupants of covid hell. For now I will simply dub her the wandering bag lady. A women of indeterminate age long straggly hair and a long cardy and kind of blank vacant look has walked passed me carrying two bags for at least an hour back and forth………………………….now this could be interesting……………….the adventures of the bag lady already in my mind..………….back do day 8.
Talk later stay safe.
Using this image is not an exageration.
UPDATE. Day 9 20th March.
No different to any other day although the night previous i barely slept because of new patients coming in late, and also I had issues with my bladder which kept me awake, but the morning finally arrived for me to see 2 new neighbours.
One next to me I could have become great friends with we hit it off straight away. Her story was like mine. Shall I bore you with it or not……… hum yeh why not.
the new lady yesterday i felt so sorry for her she is 91 and she looks about 70. She came in like me as she was in pain although in her stomach you can see its swollen.
The doctors were investigating her for liver failure or other issues and like me she got covid in the hospital. So is like me now dumped in covid ward. she was like me really depressed as she missed her home and garden. she cant just sit about for 10 days she needs tests to find out what is wrong. Whilst she is in covid ward she has to have the tests put on hold. The system is crazy. you go in for help and end up with covid and dumped. This lady I will call her Doris, her health is now in jeopordy as she is clearly ill with something bad going on, like she said covid is the least of her worries. Also like me she isnt ill with covid.
Its SHOCKING no its bloody MIND BLOWING, you can take a ride in an ambulance feeling like hell not well and all you want is to find out what is happening. Innocently you are manovred about the place, you have no idea what is wrong with you, and your scared and vulnerable. You just submit to the tests and hope they find out what is wrong and they can fix it. Little do you realise that the wards you are taking too are contaminated with covid. Little do you know that the next test comes back positive, and your life is then suddenly throwing you a curb ball. Little do you know that point of being told you have covid your life is about to change for 10 days of hell. That is Doris story, I feel bad now as i wont find out what happened to her, but I did give her my telephone number, I hope she rings me.
In the afternoon the ward sister came up to me and said I have news for you we are moving you to ward 9a we are doing a swap with a covid patient for you, as you have now done your 10 day isolation. Unfortunately there are no beds at the moment in cardio so you will go there until one is available. Well I was taken aback i must admit as i worked it out day 10 on the 21st but they obviously work it out differently. So the key to the prison door was offered me I could leave…….but my heart kind of sunk as i would be leaving my new buddies, the 4 of them who in a short time we had made friends and were kind of keeping each other going. My stomach fumbled a bit as where the hell was I going……………..ward 9A was and is the TOP OF THE TOWER. “Gulps” I am not good with heights. I was told it used to be the private ward area.
Well as per usual nothing is made easy is it. I was bundled up all my stuff dumped around me, supper came and went and I was still there waiting….waiting. finally at 9pm I was told the swap was on and off we jolly well went………………to top of the tower. I wonder if i would me raponzul…………
Well have to say I slept nearly from 9pm to 7am last night i have never done that I dont think since my kiddies were growing up lol. It took me ages to wake up as my brain isnt used to so much sleep. Its so quiet in a room on your own even being high up has its advantages. I even use my space to walk around a few times to get the old blood circulating. Virtually left to my own devices as really not meant to be in medical acute ward, so why should they worry too much over me, they are busy enough. It was the only place available.
I want to ponder a moment on the reasons for me writing this journey. My intentions was to share my journey with family and friends and also I find it quite cathatartic. I did not want to however, scare anyone from going into hospital in case they got covid, but how do I not include all this in my writing as its a big part of my story. The reality sadly is there is a risk of getting covid if you go into hospital for something else. This should no way be the case what is the answer? When you go into hospital scared and frightened you dont expect to have things added to the burden but this is without doubt the reality right now.
The point is why is this happening really? When I was in cardio ward where i got covid, I was told there had just been an outbreak in there and it was only just reopened the week i went in. If that is the case was the ward cleaned properly? The one lady who got it first had been in hospital for 7 days, so got it in the cardio ward. How and why? The staff wear masks seem to use sanitiser but why did this happen. I barely spoke to her, so how come I caught it off her so quickly? She barely came near me just for a quick chat but not close.
Its like a sherlock Holmes mystery……………….who is the culprit?
What do you think Watson…..
Hum well there is something actually I did notice when I was in there. I had a bedside table/trolley that you can use for laptops, food and things. I did notice something which did concern me and I sent a photo to a friend as it bothered me. The table had dowels around the edge to stop food falling off etc. Between the dowl and the table it had no selant whatsoever. It was black grimy gunky disgusting made my skin scrawl.
sorry photo wasnt that good but hope you can see the black.
Using a pen i could scrape the black now I used to be a head housekeeper at a large hotel and had very hight standards, for me that is just a no no. It was before I got covid, so was the virus hiding under there waiting for the warmth of a body as the other lady had same trolley. You could envisage little viruses running along the wood to find victims. A trolley like this should not be allowed the dowel to wood should be sealed properly.
Then you are in the covid ward right. Well surely that should be kept absolutely spotless? You would think wouldnt you nope. The toilet was disgusting. It was cleaned maybe once in the morning, and by evening it was splat central. Toilet roll on the floor, the floor never cleaned well, the corners of doors etc were thick with dirt, on the wall there was a reset button for when a patient used the alarm pull. This button was orange. As I sat on the toilet after wiping it over with antibacterial wipes i looked up and the button was BLACK. Puke how many dirty fingers had pressed that? Gaps in skirting boards breeding grounds. Surely the toilet should be inspected in the middle of the day, and cleaned?
You can see the dirt in corners and black under skirting wood is virus transmissable. DIRT BEHIND THE SKIRTINGtoilet paper on floor some dirty.
Its not covid I would be worried about actually but other things like noro virus and sickness bugs etc. A toilet should be kept really clean surely. ALL these things are lacking in basic hygeine, is this why a spread?
2 days ago now I had a new nurse come to me before I left she was handing out medication. She had a normal blue mask on and it was located under her nose. I immediatley put my mask on. Yes I did, as she was coughing and sounded like she had a cold. No way did I want a cold on top of everything else, but why was she allowed to be handing out drugs to people without being properly protected. This is fact I even mentioned it to my daughter as I was worried. I am not sure if by putting my mask on it made this nurse think but later she had another mask on underneath. Could it be such silly little errors are causing this virus to spread so fast in hospitals? Something is obviously not working is it.
Maybe independant people need to be employed to check all protocols are kept. The trouble is if the staff go off sick with covid, it leaves wards short staffed, and patients then get fed up of waiting for call buttons to be answered, and having the basic care administered to them. It also puts enormous stress on the staff who are at work, so its all counter productive and costing more in lots of ways. Something has to be done for the good of the patients and the hard work staff too.
So yes there is a risk going into hospital so be fully warned and armed, make sure you are fully vaccinated, support your immune system by just taking a regular Vitimin D tablet adding some zinc these things we can do for ourselves. Ventilate your homes get active so if you do end up in a ward you have more chance of fighting it. I was only double vaccinated. The reason was twice the district nurse didnt turn up and then I wasnt feeling well so never got round to it.
However, my covid was a non event. If i had been at home to be honest I would have thought it was a touch of hayfever. Yes I had a bit of aching but I ache with my MS anyway, also had a mild temperature, but nothing after a few days. I was shocked the test was positive.
I spent 2 years of my life protecting myself and my family. 2 years of isolation as I was scared of getting covid, now I have had this journey I realise its like a mass hysteria, the actual event is nothing like the portrayal.
I am just so mad that because I caught it in hospital it has screwed up a special test which is stopping me going home. Its not just about having caught covid, it is the knock on effect to the rest of my journey and health. If i hadnt got covid in hospital I would be home now and recovering and safe instead of which I am decling in health and weight and my mental health has done a nose dive…………..all because I wasnt safe where I should have been.
So for now my journey has ground to a halt until I get my long awaited angiogram. Once I have had that I can go home and start to live again but this time not in fear but in determination. You have “Nothing to Fear (But Fear Itself)
23rd March 2022. OUT WITH COVID, IN WITH HEART ——–
22nd March was very strange for me. I woke up ok, not too bad I actually slept nearly all night without waking a miracle in itself. I had my stats taken all good. I was just resting when I felt odd like my ears had gone on strike and I couldnt quite hear right. Anyway I decided to ask the nurse to help me walk to the toilet for some exercise and I really did feel queer. It was a struggle to the toilet I have to say. I got there and when I came out I heard a nurse say to another I was being moved to a bay not moving to Cardio but dragged from my room and moved to a bay bed. In all this my brain acknowledged the words you have VISITORS, I turned around and there was my beautiful daughter Miranda with my grandson Conner stood watching me.
I totally flipped I just lost it I was inconsolable crying so hard my heart was hurting my daughter was there a few feet away I hadnt seen her for over 2 weeks I just lost it. I don’t remember much just my sobbing was hurting me it was a combination of relief and seeing her I grabbed hold of her for dear life, I just wanted her to take me home I held onto her tightly “crying I cant take no more, I cant, its all too much. I want to go home, I cant move again unless its to cardio, I had no strength left. I have lost a lot of weight in hospital nothing of me.
Between the nurse and my daughter they got me back to my room and back on the bed, so I could calm down. I finally did. My daughter told me she had complained, and before I knew it the same nurse came back in and said “good news” your going back to cardio this afternoon, those words had an instant calming for me, FINALLY I was starting the end of this journey and with luck would be going home. A Doctor and his side kick came in and chatted with me; kind of apologising that I got covid in their hospital, they would do everything they could to expediate my angigram.
So anyway my daughter stayed with me an hour and gave me some salad she had brought with her and some fruit, and I managed to settle back down. I hated to see her go but I knew finally I was moving in the right direction.
2 hours later I was packed up and brought back down to cardio ward and given a private room with toilet and shower. It was heaven I didnt care about a private room, the atmosphere was so different and my nurses from the beginning came to greet me and get me settled back down, it was almost like coming home………………
They made me comfy, then one of them said, “tomorrow you are going for your angiegram” its all booked……………………………..
So here we are the 23rd March. My bloods have been taken, and my hand canular has been fitted, ready for my next stage of the journey. I am nervous my stomach is somersaulting but just got to get through this, and finally will I go home?
I prayer they find nothing wrong I keep thinking the ECG has been a mistake as I eat so healthy, dont smoke or drink, my only sin is lack of exercise which isnt down to my choice but the restrictions of Progressive MS. I do walk as much as I can without overdoing it, I try not to take loads of pain killers, I use my writing and my computer as my mindfulness, it keeps me occupied, but 2 years of isolation quite honestly more then likely took its toll.
I did that to keep away from SARS COV2 as I was told too, but now on reflection what was the point? The one place I had assumed I would be safe infected me with it, 2 years of being careful all thrown out of the window. BUT was it devine intervention in some perverse way? Was God telling me to face up to my fears and live my life instead of hiding away from it, look where it got me, a 10 day stay in hell.
I have lived all over the world, seen some amazing things, how did I get so weak to allow the thought of a virus to take over my life. The experience of the covid ward will always be with me, I wake up thinking about it and I go to sleep thinking about it, as it really had a profound affect on my mental health, how people can be treated this way all lumped together, in an archaic hosptial ward, sadly dirty, paint flaking off the walls, and the heat so high you could barely catch a breath.
The difference between the covid ward and cardio for example is like night and day. Cardio is super clean, and modern, covid ward is the TOWER where we go to take our punishment thats how it felt. I was being punished, I got covid from the hospital and instead of making me comfortable to work through it I was sent for penance lol. Like if we hide you away no one will notice the amount of patients catching it in hospital lol. Come on guys its nuts.
I go to cardio ward right its lovely and outside my window are men planting long grasses and making gravel setting for benches, it was like the twighlight world. Spending money on making an area look nice, when that money could have gone to paint a few walls in the covid ward, to make the ward less scary a few paintings hanging up cheerful stuff, paint the radiator, it wouldnt take much, instead they are spending money landscaping an area I am not even sure how you access it lol.
You couldnt make it up, its barmy just barmy. That area out of my window will need constant update so is going to have an ongoing cost where a bit of paint its just done isnt it, no more maintenance. Seems to me the people in their ivory tower have lost the plot…………………..
right I am having my breakfast and my last drinks of the day. I have to get ready to go for my angigram. Keep your fingers crossed friends for me, I am trying not to poop myself lol (again), but I am a bit nervous.
HAPPY WEDNESDAY or HUMP DAY.
DONT TAKE THE HUMP LOL.
23rd March. WE HAVE LIFT OF.
ANGIOGRAM DAY FINALLY…….
I DID IT……………YOU would be so proud of me. I had my angiogram. I was waiting all morning when 2 guys came and got me. i was bricking it lol. god my stomach was in turmoil. I was gently taken on a trolley to the ambulance. I had one guy in with me who put me at my ease and chatted to me about all kinds of things. Actually we put the world to rights in the journey which was fun and the driver loved cars so I was telling him all about Mike and I’s classic car collection. We got to hospital quite quickly. Cheltenham is an old spa town. full of regency buildings. if you like architecture its the place to go. some buildings are stunning. i went past all that its amazing.
oh my god the hospital is lovely so clean. how a hospital should be. By this time I swear my knees were knocking, the butterflys in my stomach having a good time and really I just wanted to run away.
Stop being a baby I scolded myslef you have been through worse. My 2 gallant men pushed me to the ward bay where my bed was. I was left there to wait for someone to come and talk to me, thankfully didnt have to wait long. The nurse cant remember his name explained what was going to happen and they wouldnt keep me long. I would have another nurse along to take stats which happened quickly. I had to change into one of those sexy backless no closing gowns and put placed back on another trolley where a porter pushed me on the journey through bright clean corridors to the dreaded Angiography department.
Not sure what I expected really; in my mind it was like some sort of space station with T.V. screens and masked technicians or something but where I did arrive well really I had to giggle the outer room looked like a storeroom lol. There were boxes stacked everywhere, and clothing on a rail it looked like someone had just had a car boot sale ha ha, really.
Suddenly to the left of me part of the wall slid back it was a huge door a tiny nurse struggling to slide it lol. once fully open it revealed a long bed, by the side a massive tv screen. All I could think of was wow who cleaned that screen lol it was a bit blurry in places like someone hadn’t polished it off ha ha I know the things that go through your mind obviously Mr Sheen didnt do his job.
Over ahead was what looked like an xray machine. Seemed a lot of people nurses and technicians all falling over each other, it was all so busy i didn’t have time to be scared. Several nurses transferred me from my bed to this trolley next to the screen and gently I was placed in position.
One tiny nurse said would you like to watch something on the screen oh yes please, what would you like well anything with animals would do for me. Next thing I know is a daft cockerel strutting his stuff in cartoon was walking along the screen so funny, then dolphins and underwater fish and manta rays it was quite calming and made me relaxed. Another nurse asked if I would like sedation oh yes please no hesitation there I can tell you.
Suddenly I had men all around technicians explaining what they would be doing and I was readied with the catheter in my arm I didnt feel it at all as suddenly a nice warm glow went through me as the sedation hit my blood stream DO WHAT YOU LIKE I DONT CARE was in my head, and it all went in a blur. I could see on the left spiders running around the screen and could hear two men talking to each other about what they could see and how to adjust but to me it meant very little.
Cheltenham old Spa has beautiful architecture a lot of Regency buildings well worth the visit
The radiographer spoke to me a few times, In my haze I heard him call my name he was referring with a colleague and I heard them say thats a big one check it, or something like that. He did say they had found a large artery in front of the heart which might need a stent, so they were going to just double check it or words like that. I was beyond caring to be honest.
Upshot was there is an artery it is showing signs of issues but they both felt it was duable to fix it with meds for now as stents are intrustive. so I ended up being disengaged from all the machinery and taken back to ward. Talk about anti climax lol.
When they removed the catheter a nurse placed a weird pressure bandage on my wrist which was pumped with air. God it hurt I had to keep my arm still and report if any blood came below this bandage.
So basically I have a blockage starting but for now its not bad enough to stent, so will have to go on long term meds to keep it from getting worse.
The fact my diet was so good is my savings to be honest as it saved me from the blockage being worse so healthy is best for sure. If my artery can show signs of this then what are peoples arteries like who eat poorly and smoke and drink.
So I shall keep on eating good and hope I dont have another event in the meantime. I need to live a stressless life and get more healthy. The threat is still there but at least now my BP is better controlled too and i will have rehabilitation.
Its a wake up call isnt it. No matter how boring; you have to eat right, and the best foods for heart. Gosh if i hadnt i cant imagine what might have happened to me, I really would have probably had a major heart attack. What happened to me was mild to some but just as dangerous overall. So next time you reach for that packet of biscuits you dont really need spare a thought to your heart who works hard for us to keep us alive and healthy, without it well we cant survive, so I am going to make more friends with mine now and try to keep it safer. A hard lesson made; Never become complacent. nothing in life is certain – only death.
Pressure bandage ouch ouch ouch and double ouch.
MARCH 25TH 2022. FREEDOM DAY I CAN COME HOME…………….
FREEDOM DAY…….25TH MARCH 2022.
BOY its been a long old journey i never thought i would get to the end safely. I have been confined 18 days. Why oh why did I bother to ring 999 in the first place should have taken my chances at home. Before I went in I had a scare very high blood pressure which wouldnt go down it was like 225/120 and kept high even with deep breathing. I had no idea what chasm I was opening between my feet lol. I have been in hell and then back out to more stable ground but still in hospital.
I went in thinking my BP just needed attention in some way oh my goodness how wrong was I. I ended up with, Heart Attack, water infection which would only go on nuke drugs, covid and Progessive MS.
Well eliminated hopefully the covid, the water infection, my MS is so stirred up its unreal, and I am now on life long drugs to maintain my heart.
What is so annoying is if I had not got covid off the cardio ward on 11th March just a few days after admission I would have had my angigram and been long home by now. So many people going into the hospital for problems or procedures and ended up catching covid in hospital, which then delays their treatment, and they get worse, which is not a very good combination is it.
I dont know what the answer is. Perhaps all visitors must do an LFT before they are allowed in the wards it seems such a simple solution cant imagine why no one has thought of it before. The government will have a ton of LFT left over as I doubt many people are going to buy them. SO use them to stop the spread……….or………..
So I can go home, I am very nervous as I have lost my confidence but I hope with a bit of rehab and care from my friends and family and decent food I will soon be back to normal strength, enjoying my home and my little garden and my lucy and leo.
I want to thank you for following my journey. I know its not quite finished yet will be a bit more I am sure as I have to next have an MRI to check my heart. BUT I will keep you updated if there are any new developments.
I want all my friends and family who have read this to go safe, and just enjoy the life you have. We will get through this crisis together it just needs patience and common sense.
Also for all the lovely mums out there Happy Mothers Day.
HAPPY MOTHERS DAY.
I want to dedicate my blessings to the most beautiful Mother in the world who left us in 2016 to join my Dad you are both missed so much.
My mum left us February 2016 now in heaven HAPPY MOTHERS DAY.
The Mourning Bride, a poem by William Congreve, 1697:
My life is now listening to music all day. When i feel down and not able to cope my music calms me. This is one of my favorite pieces.
Then tomorrow i will be listening to King Crimson.
Another day Crosby Stills Nash
I’ve only just begun, The Carpenters
My list is endless. When you feel down and depressed listen to music it really is calming and can make everything seem so much better. Just the sound of the ocean is soothing. You never have to be alone when you can have music in your life.
I never realised as I sat there having that photo taken on a lovely day in Brazil that soon my life would radically change and the person I was that day would slowly dissolve away like sparkly fairy dust.
Before that day I was working as a tutor in further education. I loved work. Over my life time I have taken on many jobs being a Leo I just enjoyed challenges.
When I was 16 I lived in Cyprus with my family dad was in the RAF. I completed a typing course as most of us did way back then. We would be clack, clacking away at those big heavy typewriters. Before we even started our nails if they were long would be forcibly trimmed back by our tutor, “girls you can’t possible type with talons” and well we just accepted that, thankfully back then I was a nail biter so never had to face that assault on my body. Some of the girls would cry for days looking at their beautiful finger nails all cut down to the tops of their fingers and bits of coloured nails lay sadly tossed onto the floor.
I remember these well. To learn to type the keys would have blank plugs placed over the letters.
I loved typing and excelled at it. My words per minute were top of the class I could hit accurate speeds of 80wpm. I passed all my typing tests but sadly did not do so well with GCSE in English and Maths. I can’t remember my results now but sure that I failed maths, although I did pass Commerce and English but only scraped through that. Ah well never let these things get you down over the years I have to say my life was good as far as working was concerned.
So in the sunshine of Cyprus you would find me in the typing pool, as I was an accurate typist they promoted me to typing the accounts on a long platen machine. You had to type on A3 paper sidewise and use tabulations, there were no computers back then. It was down to skill and precision oh yeh and the need for maths to work out the tabulation points. I found this really it was so complicated yet I excelled at it. I loved it.
I would use a long roller platen to type the accounts
It was fun working if my memory serves me my wages were about 20.00 a week for 37 hours. A job became vacant as a secretary/typist for a Flight Lieutenant in the Mechanical Transport Section, which I applied for and got. I loved that job and it was a huge promotion for me I was told a lot of people applied for it but I got chosen. My boss was such a great guy, Flight Lieutenant Bateman, I worked hard for him, and of course the place was teeming with men which gave my ego a boost The photo was taken a few years after I left but that is the motley crew at the time working at the MT Section in Cyprus.
It was my first sojourn into working in a man’s environment and have to say I enjoyed it and over time learnt to stand up for myself in a male work place, which stood me in good stead in the future as I often ended up working in engineering companies.
I met my first husband in Cyprus. He left before I did as he was stationed back to the UK. However, we got married eventually in minehead it was a lovely wedding I have to say both my parents were against it they didn’t trust my choice perhaps really I should have listened to them. I married my soldier Michael James Turner-Sterling. He was married in full dress uniform and to be fair he did look smart.
My first wedding to Michael he did look smart. My mother made my dress.
So innocent, 18 years old. 17th July 1970 with my beloved Dad.
I was shy off 19 in July when I got married. Michael was a hard man, very aggressive and controlling, and it was my first lesson in love the hard way.
After the honeymoon we were stationed in Camberley at Sandhurst no idea what he did there he was in the RAOC (Royal Army Ordnance Corp). We had a small bedroom in some ladies house, all I can remember is it was lonely and there was no drain to the sink, so everytime I did dishes I had to make sure there was a bucket handy. Still well you just got on with it. Lucky we were not there long before he was called for service in Germany Munster. Without hesitation I had everything packed in an MFO box, and off he went, whilst I waited at my parents house for him to find us a home. Finally the call came, and at 19 without hesitation I found myself travelling to Munster Germany on my own with my suitcase excited to start a new venture, I don’t remember being scared just excited.
Michael my husband had secured an upstairs studio apartment temporary living with a German lady Frau Pennykamp. Gosh she was a bit of tyrant and didn’t really speak much English. I was left for days on my own whilst Mike was at work, and it was lonely but thankfully we were given a married quarter flat after just a few months of moving there, and once I had settled in I got to know the other girls and we would while our days away having coffee mornings, and shopping and in the evening meeting friends for drinks and spontaneous jamming sessions as we had met German friends who were into folk and guitar so life was never boring.
I had my first daughter Nicola in Germany. It was a lonely time as there was no support from family but my new Army friends helped and so did SAAFA.
I worked in the NAAFI for a time just to get out of the flat before I was pregnant, but once baby came well I was too busy for that. My best friend Linda came to stay with us for a holiday which was brilliant and my dad came over twice to support me, when I was having marital issues (thats not for now).
After 3 years Michael again was posted but this time to Hong Kong. I had to travel with a young child it was such a long way back then, we stopped in Goa, thankfully Nicky my first child was a model baby and behaved herself and slept most of the way. We finally and exhaustively arrived at the airport which was a scary thing, as in those days the runway was actually on a strip of land between water, eek as I looked out the window my heart racing and clutching Nicola to me, the thoughts of crashing into the sea came into my head and believe me when I tell you I was glad to feel that bump of landing.
Terrifying landing at Kai Tak airport. That’s it folks.
Living in hong kong was just amazing I loved every part of it, even the tropical storms, I grew up fast there emotionally and spiritually. The shopping, people hustle and bustle of life, the odd superstitions. It was just amazing. I lived to start with on Hong Kong side before we moved to Kowloon. Hongong i lived in a high rise sort of flat. When I had to put my washing upstairs, I could literally see the aeroplanes go by and from my balcony I could see the people inside the plane and wave at the time, as they were going to land at Kai Tak.
I could see the faces of people in the aeroplanes as they were landing at Kai Tak from my balcony. After 2 weeks I never even noticed the planes.
I became strong because well I had too, living with a controlling man thousands of miles away from family there was no other option. But I think it was this period of my life that defined who I would become. It was become hard or not survive.
I had my second daughter in Hong Kong Miranda. I nearly lost her when suddenly without warning I was hit my excruiating pain, which turned out to be a massive cyst on one of my ovaries. I was taken to the hospital on an emergency and thank the lord they managed to remove it without harming my baby, I was only 3 months pregnant at the time. I had a good recovery and an easy birth thankfully.
My best friend Linda came to stay with us for a holiday which helped.
shopping in the markets
Sadly in that period of time, we lost my sister in law Lorraine who was a bridesmaid at our wedding to leukemia it took Michael hard to be honest as he thought the world of her, and I honestly don’t think he ever got over her death. We had gone back to the UK to see his family and I noticed at the time she didn’t look well. Yes it was a very sad time. She was an amazing Morris Dancer and only 16 when she died.
Lorraine next to me stood by my elder sister tania.
One saving grace which kept me sane was back when we were in Hong kong the army encouraged married couples to go on holiday we were allowed a 1,000 mile radius from Hong Kong and they would pay the flights and most of the hotel bill. Whatever was left we had to pay. Wow it was a holiday of a lifetime, one which I will never forget. We chose to go to Thailand.
Sunset on the beach Pattaya.
It was just amazing we did a two tier holiday, Bangkok for a week then Pattaya. It was breathtaking the scenery, the temples, the food, I remember Bangkok as being noisy and busy, and the taxis were little motorcycle put puts which choked the air with their exhaust fumes but you didn’t care as the excitement far outweighed any concerns you had for possible health issues.
Me Thailand in the hotel gardenThailand visiting a templeNicky on the beach in Pattaya
Our holiday was good we had a lovely time, and well it almost felt normal, and Mike was actually happy and calm. I think the pressure of his job at times was too much for him. He was very hard on himself and others around him. Everything had to be his way and he expected only the best. I was not allowed to have faults, if I wrote to my family he would read the letter before it went and any spelling mistakes he would denote them with RED biro………… When he came home from work the house had to be spotless the toys put away the children quiet and ready for bed even at 6pm.
I remember even now to this day, Michael coming home from work and literally going ballistic because I had not cleaned the rubbish bin, it had been a long tiring day. BUT no excuses were allowed and he was quick to shout at me and cal me a lazy cow, as he poured himself his usual whiskey and sat waiting for his dinner. I was simply not allowed to have any failings.
This was so instilled into my brain that I am still sort of the same, I cant abide mess, everything has to be organised, perhaps in some bizarre way it did help me over the years, as I become a great Head Housekeeper at a hotel for several years and loved it, and I enjoy cleaning I find it quite relaxing, and when my brain is in a bad place if you know me and see a sparkly house you know that I am depressed or was.
I love cleaning now and it relaxes me. My poor late husband Mike thought it was a curse he was the opposite of my first husband.
Slowly overtime his verbal abuse turned me into a meek person, I became scared of him, as his demands were not only mental but physical too. The children especially our eldest had to be perfect. He told me once his step father made him tie his shoelaces at the age of 2 and if he didn’t do it right he would be punished.
Anyone reading this please if your are being verbally abused find the courage to get out from under it. No one who can love someone can harm them or want to control them with cruel words.
Sadly this bullying by his step father defined who he was. Michael actually was a confused man, he had a turmoil of his own going on but over the years I took the brunt of it, and found myself protecting my family more and more until the day it drove me to do something I will never forgive myself for, he took away my dignity and sense of worth, and in desperation for my own sanity I nearly succeeded in ending my life. It was a hard period and I still feel guilty that I could be so thoughtless as to leave my two girls unprotected but at the time thousands of miles away from family support I could see no other way out of it. Lucky I was unsuccessful and I felt ashamed of myself for allowing him to become so much in charge of me.
I felt alone no one to talk too. If anyone reading this ever feels this black, talk to someone. Please. Find someone and talk.
I recovered with the help of support from a therapist and this was the time, I changed and took control of my life, and really stood up for myself.
The weird thing is after my stay in hospital I had to see this therapist, and my husband was forced to see one too. Now the guys office was on the 13th floor, so Michael told me he walked up to the 14th floor and walked down to his office as he didn’t want to be seen going in there. I wish really he had help when he was younger as he wasn’t a bad person not at all, he too was abused and this was the only example of a relationship he had. It’s true what they say.
My first husband was verbally abused all the time. His step father even turned his siblings against him as he felt he never belonged to the new family. He ran away and joined the army at 15 as a boy soldier, but the scars were deep and did a lot of damage.
It was an odd transition period as in a way we had switched as now I was the strong one and stood up for myself and the day he tried to bully me was the day he got a shock which stayed with him for the rest of our marriage. He learnt he had pushed me too far and nearly paid a price for that. I can’t say much suffice to say he saw just how red and angry he had made me and it scared him.
Things settled after that, and we were stationed back to the UK to Tidworth. We stayed with my parents until we got sorted. In that time I had to have emergency surgery as I had been suffering terrible pain for 2 years and it turned out to be a massive gallstone which had blocked my gallbladder I was only 26 tall and slim so was totally not expected to be that.
It left me very ill and I had to stay in ICU for a week. I never thought that I would get over it but well I did thankfully I always seemed to be able to bounce back quickly. A year later I had to have a total hysterectomy as they found my womb was full of endometriosis, and fibroids and some dodgy cells so out it all came. I was not long out of hospital before I went to work to pay off our credit card debt. I worked in the hospital laundry a horrible job and a tiring one, and still I had to look after the house as well and the 2 children I was about 27 at the time.
We stayed in Tidworth until Michael was discharged from the Army as he had enough basically. We arranged to go and stay with our friends Roy and Lesley up Wigan way until we found a house.
As Michael had managed to get a good job a mortgage was offered and we found our terrace 2 bedroom house, with garden. We moved into 121 Baker Street yes we did lol. Everytime I hear that song it reminds me of my life back then. 121 Baker Street, Poolstock, Wigan. https://youtu.be/Fo6aKnRnBxM
We had an amazing view in those days of the 2 Westward Cooling Towers. They never actually bothered us, we would go for walks around and they sort of just became part of your life. When you saw them after being away you knew you were close to home. They were home for beautiful wild orchids (which were protected).
Our view Westward Towers sadly demolished in the eighties.
We met some lovely friends there and I got work too.
I got a great job with Wigan county council as an outreach worker team leader (I had gone for the lower paid job but they were so impressed with me they offered me the lead). I was so proud of myself and ran a team of 3 people and our aim and objective was to move young people from education into Youth Training Schemes.
We did well; even this scheme called YTS was slagged off as using slave labour it wasn’t, not if done properly. The young people we moved into jobs were well supported and the small business that they were allocated too were under no illusions as to what was expected of them and how they had to treat the young people.
It was sad the YTS was deemed slave labour, when we now have similar issues and complaints about apprenticeships. The saying goes people dont want to learn from the bottom up, they want to be earning the top wage but not aspire to it.
I had one girl who wanted to work with a mortician, yes you read that right, and I managed to find her a placement, and she was success story as after her period of training she stayed with the company who were very impressed with her. We had others too. I loved that job, and my training as a youth leader (I did a course whilst we were stationed in Tidworth and became a youth leader through Wiltshire County Council and ran a youth club then). This helped me a lot in the outreach Leaders job in Wigan.
Life was ok not perfect we had ups and downs more downs than ups, and my strength and resolved made it possible for me to finally decide that enough was enough. I think being offered such a good job made me wake up to the fact that there was little wrong with me, it was my husband who had the issues not me. I was finally waking up to the fact and my confidence was growing. Actually what made me decide was something Michael did to me. He had bought me a beautiful pedigree Afghan hound a male I called him Darak. I loved that dog. He was just stunning the kids loved him too.
Afghan hound. No my Darek but he was as stunning.
Darak was only young and for some reason took a total dislike to anything that belonged to Michael and would destroy it, shoes, phone you name it if he left it out, the dog would chew it. I got home one day to take him for his walk, and he wasnt there. I found out that night that Michael had sold him to someone as he was fed up of the dog ruining his stuff. He never told me he was doing this, just did it. It broke my heart and I never forgave him, and as far as I was concerned that was the end of my marriage.
My parents came to see me and we talked and finally I got the strength to leave my husband. I had to for my own sanity and my children’s safety too.
We seperated after 11 years of marriage, I really did try to make it work, but since Michael left the Army his behaviour became more erratic, he drank way too much he did work hard no doubt about that, but my family had to come first. We agreed I would stay in the house, and he supported me with maintenance, and life kind of settled into a new routine.
Then I did something so stupid, I still can’t get my head around why I did it.
Life for me and the girls was good when he had left, I was working well, the bills were paid, then suddenly Michael started to come round more and would ask constantly if we could get back together, he missed us, he swore he would change. He told me had been offered a great new job with a company called Kalamazoo Business Systems, and had been offered a job in Kenya. He wanted us to start fresh and give our lives together another go.
I remember landing at Nairobi airport and the drive to our new home we actually saw giraffes roaming the outside of the city which then was a lot smaller.
Why oh why did I do it? I still cant work it out. I really was in a good place on my own and had been dating but I think part of me felt the children needed their father even though he wasnt the best dad he was thier father and seemed to have changed to them. Perhaps my leaving him had shook him up a bit. He did seem different much more calm.
Like a fool I agreed. We put the house on the market and moved to a temporary house in Staffordshire whilst Mike underwent training for his new job. Then before I knew it we were on a plane to Kenya to start our new life. In all this time, I have to say he was not the same, he was far more caring so perhaps I was lulled into a false sense of security.
We were allocated a lovely house with grounds, a live in gardener handyman called Vitas. The house or villa was lovely with lots of kennels and grounds so we got two labradors cream and black Penny and Tuppence, and my life settled into a routine. Girls were placed in school, we managed to find me an old banger to drive around in, i got involved with the local RSPCA and helped as a volunteer and even took in animals to recover, so yes life settled it was all ok really.
I loved Kenya the people were just amazing. I also got involved into the environmental issues of Kenya as well which even way back then was a worry, with trees being cut for charcoal leaving a lot of land barren with no protection so topsoil would fly away in the wind, making it hard for the plants to grow. We would visit villages and try to show them and teach them other ways to make cooking fires.
I learnt about environmental issues dust to dust stopping kenya turning into a desert.
Yes it was a very interesting time in my life I have no regrets just sadness.
I never felt scared or unsafe, even when Mike had to go to Mombasa to work for a few days things were always good.
We lived there nearly a year. It took forever to sell our house in the UK and the upkeep of the mortgage was hard work and it was a relief to finally find out it was sold. It took the usual 3 months for contracts to exchange and complete.
Then my world came tumbling down…………….
The news finally came the house was sold what equity left was agreed to go into our joint bank account was about £3,000 lot of money in those days. Then well life just changed. Mike no longer was a tolerant man, but horrible. Just like that over night I swear. The children irritated him, I could not do a thing right. He made it as horrible as possible for me.
The catalyst came very quickly. It had been a difficult day I remember my eldest was playing up and I was tired as I had been on my own with the children and felt raw and beaten. I was at the end of my tether and I foolishly said to my daughter “you wait until your father gets home young lady!”
He came home and punished her, far too aggressively and I then realised he had not changed it was all for show, somehow to keep me close whilst the house was sold. Once the papers were signed I was no longer needed. I woke up to it and decided to protect myself and my family I had to leave. We discussed it and arrangements were made and within just a short time family contacted and with my girls arm and arm I left him never looking back. It was so hard to go back to UK I felt a failure a fool. I had been played. But it wasn’t until I got home I realised just how much.
I stayed with my sister and my father helped me find a place to live back then renting a place with children was pretty hard but he found me a lovely flat in Nailsworth (never even heard of it but it was a beautiful village), and I wasn’t too scared as I knew I had money from the sale of the house at least so I thought £1,500 a fortune to me.
My new home Nailsworth a really lovely town.
I had a rude awakening when I did arrive back to the UK and checked the bank account as instead of the expected money from the sale of the house, there was only £80 in there. My father helped me to sort it out and it would appear somehow paperwork instructions were believed to have been sent to our solicitors which I had no knowledge of signing transferring all sales into another account which didn’t even have my name on it. When we managed to contact Michael about it he totally denied anything and being so far away with no reciprocations from Kenya there was nothing I could do about it.
I was penniless with no home, BUT the anger in me somehow kept me from going insane, and I became so strong just had to as my girls needed me I had to protect them. So with 80.00 we got some second hand furniture i can remember it now an old cottage suite some beds and bits and bobs and we started our new life and I managed to get benefits until I could find a job.
The girls soon got into a school and met friends, and my new life began. I never received another penny of my ex husband as he worked that well as you couldn’t force money out of Kenya. So for many years it was down to me, and this man got away with looking after his own family and then took on a new wife and a step daughter, having told me over and over again he didn’t want children. But he had needs and he needed someone to look after him, so he soon found another women and a step daughter.
Thats the thing isnt it even when you feel beaten and abused I decided to keep the hatred out of my heart in order to survive. Hatred achieves nothing.
I settled into Nailsworth and soon got a job. Using my secretarial skills I teamed up with a friend Julie who I had met and we opened our own secretarial services, both got jobs straight away, which turned into full time work. From that day I was never without work.
I worked in an estate agent, run a restaurant, no challenge was too hard for me, I started to heal, and eventually after a failed new relationship, we moved into Stroud, and I got more work, the girls met friends and had a lovely life.
I worked for a temp agency and did so many jobs, and attended courses, learnt Export documentation, ran offices, another estate agent, I never stopped, always working and honing my skills. The girls did well at school and with all my hard work I managed to get them a pony each, and they went off riding. Life was as good as it could be.
Mandy in Kenya where she got her love for riding from. She was six here.
We moved a few times but I enjoyed those challenges. I realised men were well a waste of time, my children were more important to me. They became my reason for living, and though I know my life had dark days I also had good times too. Taking them off on holiday, riding with them, it was good. I did drink way too much at times, this was the aftermath of living with my husband, but overtime with help I managed to even sort that out for myself.
We moved again to Stonehouse, where I had a job where my new husband Mike worked (yes I know confusing), when the business did a dip I was made redundant, but never let it stop me, walking through the town one day I saw an advert for a community worker just the same job I had in Wigan all those years before, applied for it and got it. It also included running the local learning centre, but I also had to learn Microsoft Office and use a COMPUTER oh my goodness gone were the days of clack clack or electric typewriters, I had to use a Computer and learn to use the operating system.
I did it in 3 weeks, took every course and passed all the exams on Microsoft and ended up running the college, teaching the students, supporting them, then I got headhunted by the local college, and worked teaching adults in further education, which meant I had to attend night school and complete a teachers training certification which I am proud to say I passed both levels with flying colours. Nothing could stop me, I even become an NVQ assessor for Business Admin.
I ran the local college loved my job, and even had two of the best students who won awards their awards were handed to them by our local councillor David Drew, I am on the far right. Alison was senior learner and Victoria junior both had different issues with learning but did so well. I was very proud of them both.
I had my my Mike and we were living together he was amazing so different. My eldest had left by then and was starting her own journey with her new husband.
Life was good finally.
Finally I had a life to be proud of, a man who loved me for me. My first husband had come back from Kenya and we had made friends again, I dont think its good to leave blackness in your heart it just consumes you, and I forgave. He had broken up with his second wife, and was trying to get back to being with the girls, but suddenly fate stopped that he died suddenly in his early fifties, at least he got to see our daughter Nicola married and he met his grandchildren, but well life wasn’t so good on him.
In the meantime, my life was always busy, I worked long hours, my new husband Mike and I bought our council house, he worked away a lot as an engineer, overall our life was good. I was head hunted again, and was running a city college flexible learning centres 11 satelite centres, 54 tutors, putting into place new examinations for I.T. such as ECDL, and IBT2, running community courses, teaching business admin, basic cooking in the community, I even did a course on how to survive the Millenium with a bunch of ladies which was a real hoot but it was fun to do.
Yes that was how I was before the picture was taken in 2000.
A beaten women, who rose from the ashes like the phoenix and worked hard to be who she became, a FIGHTER, a WARRIOR, I learnt that life isn’t like a box of chocolates, it’s hard work, it throws curveballs at you, and takes you through a maze of emotions, each time you think you have found the way out of the puzzle another issue takes its place.
I worked hard to be born again.
You have to deal with it, find a way. Never harm another human being, we are all trying to survive the best way we can.
Everyone of us comes with baggage no one is perfect. Before you criticise someone for not doing something right ask yourself why is your way better?
I could have given up way back but I didn’t. Each knock back I learnt from it. I improved my life and hopefully the people around me, I loved all my students, and I worked hard.
I loved my family unconditionally, I even mourned the man who made me who I am now, as even though our lives were rocky I knew he had a bad life when he was brought up by a mean step father, always forgive it is not worth, losing family as we will always need them one day.
All that behind me, that day I was sat with my mike on that rock in Brazil all that is why I am writing this now 20 years on, after finally finding out I had progressive MS, lost my mother, and my beloved, all that before that day is why I am here now writing my story.
Without all the growing up and learning how to become a good person, I would not be here now to look back on a wonderful life.
A truly wonderful life, even with the black times, it has been a wonderful life, the saying life is what you make it is so very true.
Life is what you make it, your life is in your hands you can’t blame others for your failings, they are your failings, always when you look out the window instead of looking out on a bad day, see the beauty in what you are looking at. There is always beauty just in a flower, or birds eating off a bird table, the sky making strange shapes, so much good around us.
No dont blame your failings on anyone else. Improve yourself and own up to your own failings.
People look at me now and see an older women a disabled women using aids, a women who struggles to walk or sometimes even talk, I just want people to learn the story behind the disability, how I got here, how I manage. Who I was. I love my life and people. Yes I am disabled I got given the joker card and was given MS to deal with. My life before my MS defined how I would deal with it.
Always look at your strengths they will always be there when you need to draw on them when your having a bad day. I hope you enjoyed my story. It is all true as I remember it.
This is me Zenda Trim before and now, just the same person, but one perhaps a bit wiser now.
Me before in Tidworth
ME NOW. Before I lost my husband. I am the same person just have to endure more challenges. x
Life’s like a play: it’s not the length, but the excellence of the acting that matters.
Lucius Annaeus Seneca
Below some of my life and memories. I have had a good life and will always think of those moments as they matter.
My daughter with her horse star. Mum enjoying one of our partiesMy nicola having a giggleMike and I on holiday MineheadMike and I on holiday in USAMy young lad I sponsor for school in KenyaMy eldest grandson Leon graduating University so proud of him. A self portrait of Mandy with her lovely dog Lily who passed. My fab sister Tania who is a cancer survivorMy eldest bro John with his lovely wife CathyMy nicky and mandy with their cousin Me on holiday with my lovely mother in law Joan in MaltaOn holiday in butlins with my LeonMarried to Mike my flower girl granddaughter Laura grown nowMe with Lucy out with Mike for lunchOne xmas out for lunch with family. Kris my SIL. Daytona beach USAME FISHING TREASURE Island USAON HOLIDAY IOWMe having a gigglestolen hat for a laughMe with my lovely rare VorwerksMike with Billy our Lavender PekinMike with our daft Poland Sid ViciouisMore chicks hatched One of my hatchlings a lavender PekinMike with Conner our Australian xmasMy lovely mumMandy with a friends horse and foalMy LucyThe sides of my heart. Nick and MandyNicky looking very professional riding her SpiritMumsie enjoying our partyconner in our old SkodaIsaac and conner xmas outMike building our chicken areaanother hobby wine making50 kilos of grapes were turned into wineDilys sadly lost to us a good friend and colleagueMy front garden old houseStory of Mikes skodaMike with SkodaAb accolade to me by a studentMike castle combe in his mini (blue).Some of our classicsBrazil 2000Mike having a giggleNicky with one of her poochesMike with one of our vorwerksMy family out for a meal sitting on mikes memorial bench.Me in my jazzy mobility scooterMe with Mandy meeting my horse on our land BudsNicky xmas 2019 at a reviewMike on scooter protesting for a slow traffic outside our houseThe one man who was always there to save me when things went wrong. My beloved dad who left us 6th October 1997 a year after my marriage.
I keep hearing this in my head no idea why but perhaps its my alter ego telling me to write my thoughts down……….
Christmas is coming, the goose is getting fat Please put a penny in the old man’s hat If you haven’t got a penny, a ha’penny will do If you haven’t got a ha’penny, then God bless you!
Christmas is coming! (Music composed by Edith Nesbit Bland 1858 – 4 May 1924 , lyrics author unknown.
I wonder who wrote the lyrics to this nursery rhyme which has been handed down from generation to generation.
The words to me in my head remind me of when I was young and hearing this rythme I would feel excited as I knew soon I would be enjoying a wonderful traditional Christmas with my family.
Christmas is coming, its a festival of plenty but the words Please put a penny in the old man’s hat what does that mean or signify? Why would it be included in what is supposed to be a Nursery ryme announcing a time of joy, warmth, gifts, and family and friends who meet together to celebrate the date of Christs birth. Such a simple concept.
Please put a penny in the old mans hat – is it saying although its a time of joy and celebration never forget the more unfortunate of you and give to charity or donate to the less fortunate?
I think the meaning of this simple rhyme has been lost over time.
Let’s look at Christmas now in 2019. Sing the song and sit back and think about all your Christmases in the last five years. Were they Joyful? I can almost guarantee that some were not.
Christmas now well we are bombarded by advertisements – toys, chocolates, clothing, gifts of varying sizes and prices. You are virtually brain washed. Decorations are put up early, shops sell Christmas stuff from September.
Then you ask the children what would they like, and instead of simple things, you get a list full of electronic toys, games, laptops, ipads, tablets, T.V. and the list is endless.
You sit back overwhelmed by the demands of a very expensive Christmas list.
Stop and think why do you have to indulge in their wants? Who is forcing you to do this? Do you think your children will love you less if you just buy them one present?
Our lives are not our own anymore, we are programmed to follow the many who like lost sheep follow each other, we are pressurised by our children as they are pressurised by their friends to have all the latest gadjets.
Christmas is coming……..Instead of you feeling joyful of the festival to come, you feel instead DREAD. Your mind racing how to buy all these things, checking your credit cards and your bank balances, and wondering if you will have enough money left to even feed your family.
Why? why do we allow ourselves to be manipulated in this way, isnt it time to simply just say NO.
I remember a few years ago a young man who run his own business he worked really hard and having a new relationship it came with two children both females. At Christmas he asked what they would like and they both insisted they had the latest phone, which I believe at the time was £250, each. He had no way of paying for it without working long hours.
My advice to him was say NO, sorry but you simply cannot afford it, but alas he never listened and purchased the gifts. If he had said NO what really would have happened? We need to take back control of our families. We need to make a stand. Christmas is not Joyous for many anymore. Its stressful and it causes friction in families and debt in many.
Christmas is coming……..spare a thought for the homeless, the people who have nothing, the children starving in Africa. Maybe we need to teach our young that we just can’t do it. Its not because we love them less its just because if we do it for that one time, it means for months they will have to do without other things.
I loved Christmas when I was a child. The memory of going to evening mass, with my family and when it was over coming home and my father would always make us ham and poached eggs, then we would go to bed.
We knew if we didn’t sleep Santa would never come, so we forced ourselves to sleep.
My father would tip toe through the house, with his RAF blue long knee socks full of things for us to enjoy in the morning. Our stocking would be full of a tangerine, nuts, a toy and I remember like a mule thing which you pushed underneath and it would fall over. We would spend ages with our stockings, such simple things, but to me the best.
Then when we got up we knew we were in for a treat as there would be sheets of pasta drying on our parents bed and we would be imbibing on home made lasagne as a starter to our Christmas meal baked by our mother an expert coming from Italy. The smells were soooo good. Everything home made, home made cake, pudding, biscuits, mince pies.
Our presents would be under the tree, we got one or two each, I remember a dolly I got one year gosh I loved that doll.
My christmas dolly and my brother peter with his pet chameleon Tripoli Africa.
Our Christmas lunch was just amazing. There were four children for several years until the other two were born and added.
Oh yes mustn’t forget the Christmas crackers which were treasured whatever was in them always a surprise. Sometimes the cracker would not explode when it was pulled between us, so we would take turns in snapping it to make the noise. First we took it in turns to read the silly motto which came with the cracker the silly joke and laugh and giggle or groan at some, then we would play with spinning tops, jumping jacks or magnifying glasses like they were the most expensive gifts in the world. Oh and of course wear our paper hats.
Some funnies to have a giggle.
What school subject are snakes best at? Hisstory What do you call a crazy golfer? A Crack put
What lies at the bottom of the sea and shivers? A nervous wreck
What do vampires sing on new Year’s Eve? Auld Fang Syne.
What’s the fastest thing in water? A motor Pike
Christmas Crackers a source of huge amusement.
We would sit for hours eating and laughing and enjoying each others company. The Christmas pudding would arrive and we would hope that one of us would get the prize the three-penny piece wrapped in silver foil. The person who got it would let out a huge WHOOP of joy as back in the day threepence would buy you plenty. Even louder when it changed from the traditional three-penny piece to a silver sixpence.
Joy for one when they found the silver sixpence.
Once the meal was over we would all pitch in clearing up, dad would have a snooze and we would probably end up playing board games until it was time for tea. The tea would consist of home made Christmas cakes and turkey sandwiches and home made trifle….my mouth is watering just typing this.
By the time it was bed time we would be stuffed and exhausted but replete and happy. The next day was Boxing day another lovely day to enjoy family time together, and a splendid cold meats buffet accompanied with home made chutneys. We would play with our toys, and just chat and have fun. It was always about fun and love and warmth.
Christmas for us was never about the presents. Yes having a present was obviously exciting but the festival itself with all the traditions was what really I felt the most exciting thing.
I stopped enjoying Christmas some time ago now, I don’t consider myself a Grinch not at all as I have always been giving. To me it doesn’t feel the same anymore. It appears to be more about what is given then what is enjoyed.
You can enjoy your time at Christmas just being together as a family, enjoying a meal which did not cost the earth, and a few presents which mean something to the person receiving. Why does it have to be all about expensive presents, and spending a fortune on so much food, there is simply no way it will all be eaten in the two days. The waste bin sadly swallowing more then the humans.
Sit back and just think, do I need all this food? Why do you need so much. The money you save on food could go into the old mans hat…….. instead of the black rubbish bin.
I have known people to buy a goose, turkey, duck, chicken, ham and beef and salmon just for two days. Is it really important to have so much, think of all the animals that have had to be slaughtered to put on a Christmas meal with that much meat.
Christmas is coming………… Enjoy it without the stress the debt and just have fun with your families. Christmas is not about how much we give or spend but about the joy of family. Just being with each other remember life is tenuous and whilst we are stressing over all this money we can loose a loved one so easily. It means nothing Christmas not really, not anymore but our families mean something, and we should just enjoy them and perhaps start a new tradition of less giving of material things, and more giving of ourselves.
This was the best Christmas my husband and I enjoyed together it was an Australian themed Christmas. My brother lives over there and I wanted to share Christmas in some way with him, so we did a bar b q and wore hats, and had kangaroos about the place, and of course Fosters beer it was the best ever. Even though it had snowed. It is a Christmas I will always cherish with my Mike. One to remember.
Best Christmas ever.
Mikes mum and dad
My wedding with my mum and dad
My grand and granddad and Trixie the dog
All my family lost
Have a lovely Christmas with your friends and family, and spare a thought for the old mans hat…………………………………god bless.
Beautiful Selkie – Scottish Mythology
Sharing xmas out for lunch with family. I think this is the penultimate xmas I shared with Mike before he passed away in 2017.
In the United Kingdom if you are deemed disabled you can apply for several benefits. One is called PIP which stands for Personal Independence Payment. Before this we had a simpler system called Disability Living Allowance. If you qualified for enhanced rate you could choose to take the money monthly OR use it to get a mobility car which is sort of hire purchase for life. The car choices were many and varied including WAV vehicles (Wheelchair Access), and many people took this option to make their lives easier and yes to get to work.
The other is a Blue Badge, which enables you to park close to shops and if you have one it is easier to get your wheelchair out of the car, because the designated spaces are wider.
All sounds good doesn’t it? How caring are our Governments to have these schemes in place.
So how does one apply for these benefits. Well you contact the Department of Work & Pensions on 0800 917 2222. You have to answer questions which takes about 20 minutes to ascertain if you even qualify for PIP. If you are then you are sent the massive and huge booklet that you have to actually fill in. Now anyone who is disabled will take one look and think your joking right no chance. Myself included having PPMS my brain is useless. I was lucky as I could ask for help from Aged UK (yes being old has its advantages). A lovely lady came and helped me fill in this huge form who I found out came from the DWP.
You can ask for help from Citizen Advice and if your really stuck a member of the DWP can again come and help you.
Now surely, if you have been diagnosed by a specialist why do you have to be put through all the stress of applying for this benefit? Would it not be easier all round if there was a score scheme. Well there is but obviously no one seems to be aware of it which was designed for MS. It’s called the EDSS Score.
EDSS SCORE SIMPLY EXPLAINED.
Now this is useful, surely it could be adapted to include disabilities as a general rule? If someone was given a score by a specialist then the form could be massively reduced saving a few trees, and personal sanity. You could simply supply your score which would be certified by a specialist. Thus saving huge time and effort on the behalf of the person applying.
Obviously you would be asked how does your disability affect you alongside. But the scheme at the moment is you get points for mobility and care. The higher the points the more chance of getting the higher rates. Some illness are varied in their disability. One day you can feel fine, then the next day you can barely walk so it is very difficult for people to fill the forms in as on that day they may be having one of their better days.
IF you are diagnosed with a life changing illness like MS for example its progressive and there are NO CURES. Yes there are for RRMS disease modifying drugs, but these only slow down progression to a certain extent. With Primary Progressive MS, although there is a new drug which could benefit some people now, it is not guaranteed as a cure, only to reduce the progressive deterioration of the disease.
The scheme at the moment is so hard to get. Many people who were awarded a high rate say on the old scheme DLA, now do not actually match on the new scheme PIP. How can things be so wrong? This leaves many applicants in financial hardship.
Now if you don’t get high rate mobility you could lose your money and your car and a lot of people have relied on the car to get to work or even have some sort of life.
So If they did not score on the high mobility then they would lose this benefit and their car. It’s a bit rough isn’t it? It has left many applications in a severe financial and emotional mess and yes suicidal I have heard that “cry” worriedly on forums, where people are so wound up and upset about being put through this tortuous process they talk about ending it all WHAT’S THE POINT, you hear its damn well upsetting.
Why are they making it so hard? Because the first scheme DLA was so abused. (So it was thought).
AGAIN the genuine are PENALISED because of the ABUSERS to the system. Genuine people are being criminalised. Made out to feel like they are acting in a fraudulent way.
Genuine disabled made to feel like criminals.
If people didn’t scam or abuse our systems we would all be stress free. It makes me so mad that the few ruin it for the many. If you are genuinely disabled with a need why the hell should we have to jump hoops? It’s hard enough being disabled without adding on top the stress of applying for a benefit which is meant to help us have a better life.
It’s like the Powers that be are doing us a huge favour. There is a sting in the tail. For example if you have worked or have savings and you are awarded the higher rate in care say for PIP they will use that if you apply for government funded care package.
Now if you haven’t worked and have no savings you get it free. Rough justice why work in the first place!
Most of us working or have worked, maybe have some savings get given PIP. I qualified for ENHANCED IN CARE.
DO I benefit?
I have worked since I was 14 only time I did not work was when I brought up my two daughters, but went back to work. I get a full pension with a little bit from my husbands.
Before I qualified I had government help for my care and was able to hire a care worker for 10 hours a week which was so useful. It enabled me to get out more, go to see my mother in Bristol, and I had help with my personal grooming and bathing.
Because of circumstances I had to sell my house which means I have savings. So now I do not qualify for this 10 hours it would mean paying out £520 a month towards my care. As I was unable to find a suitable home now I rent a small flat so including the rent for this and the care that I would have to pay my monthly outgoings before I ate would be £990 a month more then my pension.
I cannot afford to pay for 10 hours care now without seriously dipping into my savings which I want to use if I can find a house to buy, so I have reduced it drastically and now suffering the consequences as I rarely go out, (my emotional and mental health has been compromised), and I don’t have that person there that I knew I could rely on to support me on my down days. Yes I have family who can take me out BUT they are not trained to deal with someone with disability. Its not that simple, you ask someone to take you to an appointment you have to use your wheelchair, oh well thats easy enough……….. WRONG it couldn’t be further from the truth.
If your not used to dealing with someone in a wheelchair you can make that little journey out; exhausting and painful. I know I have been there. With all the best intentions and kindness experience is definitely best. My care worker was great with helping me bathe and keep clean and wash my hair.
MANY people who get PIP use it to make their lives easier. some save and buy scooters, or wheelchairs, others to go to gym or swimming etc.
I doubt many are going off on holiday with it and lying on a beach somewhere smoking fat cigars and drinking champagne.
we are penalised over and over again for being DISABLED. there are more and more people becoming disabled, and need help.
I WOULD swap in a heartbeat if I didn’t. believe me.
IF someone is diagnosed with a life changing incurable disease, then why the hell do we have to beg for money? No its not our right to have this benefit, but it is there to help us to have a better life so if the government offer it, why make it so totally impossible to achieve getting it? It’s like being tested to see how determined we are….like going on an Army assault course and the ones who get to the end are rewarded the ones who fail are chucked on the scrap heap. That’s how it feels to me.
ARMY ASSAULT COURSE
Now people with MENTAL HEALTH can apply for the new PIP which I actually think is really good. Having said that what about our mental health? The mental health of people who apply for PIP and are left bereft because of the complexity of the system, they loose their money, their cars, their dignity and some are so distressed over all this sadly they lose the will to live. Yes you can appeal a decision by going for a Mandatory consideration……….but that in itself is stressful and can take months to achieve.
The next obstacle to making our lives easier is to apply for a Blue Badge. IF you are lucky to get awarded the enhanced rate in PIP, you have more chance of getting a blue badge but its not a GIVEN. You still have to fill in forms and some have to still have an assessment. AGAIN because the blue badge scheme is and was abused………….
The Blue Badge.
The coveted Blue Badge.
The blue badge scheme is to enable disabled people or with limited mobility an ease to park and not have to walk too far.
My husband was diagnosed with END STAGE COPD. He was sadly deteriorating and did struggle to walk far, not with his mobility but with lack of breath. He struggled to walk from the car park to the shop door so I persuaded him to apply apply for one.
The assessment nearly put him in hospital! My husband explained to the assessor at the time of the assessment that he really struggled with his breath and found it hard to walk very far. Having said that, the assessor decided to see if he was actually telling the truth (even though he had back up paperwork from his doctor) and they made him walk way above his capabilities and got a shock when he had to sit on the pavement to catch his breath. He did get his badge but was made to feel like a criminal in doing so. He was quite upset when he came home and took several days to recover. I know he said he wished he had not bothered, but he did get his badge, and it did help him before he passed away.
I think the system is cruel, and discriminatory.
and against our human rights i.e.
the right to an adequate standard of living
the right to the highest possible standard of physical and mental health
Maybe we should start marching to parliament in our wheelchairs and scooters?
I just dont understand how some people get PIP and others dont. WHY SOME assessment centres are brilliant and yet other people get zero points.
OK taking a slight diversion here as this is another pet hate of mine.
Regarding parking say at large supermarkets. Where I live there are more TODDLER AND MOTHER places then DISABLED. Do these people have to jump hoops, prove they have kids and a need for these spaces NO. BUT WE DO. They could simply borrow someone’s child and buggy so they can park close yes some people are that lazy. Yet genuine disabled people are put through hell and back to get the same spaces allocated them. Just different images on the parking spot.
I remember one day some moons back my care worker took me shopping to Tesco and there were no disabled parking spots, so she parked in a toddler and child space as they were virtually all EMPTY. Before we could get my wheelchair out, a guy came and told us to move! We were not allowed to park there. I mean yet people quite often feel it is ok to use the disabled parking places to quickly run in to the shop to get their fags or beer lol. Or block off the disabled spots with poor parking as they cannot park anywhere else so well lets just block the disabled off they are not important. RIGHT? Stand up all those of you that this has happened too where you have gone shopping and someone has used the spaces available and you can’t get parked and desperate for a wee? Been there done that and thank god for ladies incontinence pads is all I can say.
same size space different image.
The solution is so easy. If your disabled you register and are given a disability score and this should be used in all applications for help. Still I suppose being simple is way to hard for any government. They have to make everything so hard to apply for. Its like they think by doing so people will give up and sadly some do.
Having a blue badge. Does it suddenly mean we are RICH and able to make a huge killing on the stock market? NO it just means that when we have to go out say for an appointment at the doctors/specialist or even to feed ourselves we can do so in comfort and less pain as we don’t have to walk so far. To be honest one of the reasons I rarely go out is not being able to find a space available, and having the person caring for me at that time struggling to get a wheelchair out and then negotiating it to the shop door, or its raining so we have further for us to get wet!
WE should never have to beg for help. Its a bit of money to make our lives more independent, isn’t that what PIP is about our INDEPENDENCE? Surely if it helps someone with a car and they can get to work or extra money to feed themselves healthier, then perhaps they will feel well enough to go back to work. Isn’t it or couldn’t it be a WIN WIN situation?
SORRY fed up of being disabled, fed up of begging for lifts, fed up of struggling everyday to even want to get up and fed up of feeling like a criminal. Also upset for my friends that I have met on the Internet who are constantly stressed over having to reapply for benefits and becoming so stressed over it all they are literally making themselves more sick.
Still I have my memories of good times before becoming disabled. The pictures below show some of my life before and after becoming sick.
the start of my journey. 2000 after this slowly it all descended into madness.
health. Having fun with Mike on a car trail called the CLOUDS, when i was well such great fun.
My two students I taught who won best students of the year awards. Me on right and David Drew MP and my bestie Alison and victoria 19 who had severe dyslexia but still got her RSA exam. Both amazing people.
Me with dark hair yeh right, and my younger daughter married to go on to have 2 lovely boys, sadly the marriage didnt last but my love for her will always last. xxx she is the other side of my heart as is my elder daughter on the left of the photo. x
Never thought i would sunbathe on Daytona Beach USA, but I did. I loved that holiday was a long time ago well not so long before I got sick but an amazing experience we both enjoyed.
I live in a beautiful part of the country. Not long after i started to get sick out with mike when i could walk with our Lucy JR.
enjoying our time out together we often went fishing at the weekends or just off to the canals.
a visit to my mum she kept me sane, i loved my visits to her, sadly she passed in 2016 suddenly and I cant bear to go near the cemetery as it makes me too sad i have her always in my heart, everyday I still say good morning to her and my pops. x
BUT you know what I wouldn’t change it for the world, as all the great memories I have of my life with my husband helps me through the dark times of pain. I have done more in my lifetime then many people could dream of.
I just want the system to change to make it easier for the disabled to have better and healthier lives, not to make them feel like criminals, but make them feel supported and needed even with disabilities, we have a right to a life, and respect just like anyone else.
God decided to make us his soldiers. I am tired of being tough, but still not too tired to worry about my friends who have to face such awful challenges in their lives, and are left to feel let down. Remember no one wants to be disabled……………it can happen to anyone at anytime in a nanosecond. So come on the powers that be listen to us, make it easier for us, RESPECT us, help us, don’t criminalise us……………..please.
I think this is very true.
Please feel free to share your own experiences, good or bad.
Lately I have felt lost and alone even with people around me. My pain of my MS seems to have magnified and suddenly I have found myself struggling to cope. I lay at night wondering how will I manage to get through another day of this nerve pain, and yes pain in my heart due to still grieving for my husband.
Nearly two years on will be on the 3rd October, still my heart aches for his loss and also the pain of my MS instead of sitting quietly in the background has suddenly become much more noticeable. Its very hard finding things to do now to turn the volume down, and I have found myself musing over the fact that what on earth am I making all this effort for? Really having had a wonderful life 30 years of it more or less with my husband at 68 what was left for me?
Mike and I with Lucy on holiday in IOW one of happy times
I am feeling so sorry for myself, many people out there are far worse off then I am. I could make more effort but being ill for so long its hard to break the habit. If my hubby was still alive at least I would have someone with me to share my worries and pain, but being on my own now its difficult as I dont want to burden my family with my moaning all the time. Stupidly in a low point in my life more through grief my monkey chatter persuaded me to leave my home of 28 years and move into a more secure place to be safe. I felt by doing so it would take the stress off my family for worrying about me, as being in a large 3 bedroom house with lots of rooms and a huge garden there were plenty of traps for me, to hurt myself.
So the house went on the market and I moved into my tiny sheltered/Independent living flat. I do have access to outside a bit of garden and my flat is located on ground floor and now no flat next to me on the left, so really I have autonomy to more or less do what I want with regard to making the patch my area.
A bit of my outside area I have made my own.
I have hand rails outside and they are covered in solar lights, my little area just twinkles at night with lots of solar lights, my aim was to make it look like a happy place. The bird feeding table went up but wasnt sure that being so close to my flat there would be any visitors.
Depression can come in many forms. It snucks up on you, and before you know it your immersed in it’s confines the voices in your head (I call my monkey chatter), who persuade you that your doing badly, you need to get a grip, everything it tells you is negative. If you listen hard enough it makes sense, and then your confidence starts to dwindle, your self doubt increases, and your feeling of despair becomes all you can feel.
I woke up one morning and thought if I was going to survive this new chapter in my life change had to happen but how? Walking is hard work, going out on my own is scary even on a scooter, because you worry that the tool you rely on will break down and you will be stuck.
Everytime I want to go out I have to ask someone to take me. That in itself makes me feel useless. “A trip to the garden centre is offered, they do not realise by offering me this it is just another reminder that I cant do my garden anymore, and have to rely on people. Looking at all the lovely plants where can I put them? I love flowers and plants, my home before was full of things, trees are my favorite, fruit trees. I love ornaments for the garden now my little space is full of them.
Some of my pots i have changed it since
Come on I will take you for lunch!”. It’s not because no one asks me but lunch ugh!. It hurts to sit for very long and at the moment I am cursed with the worse flatulence anyone can face. Having MS its screwed with my bowels and my bladder and two things I can rely on is the need NOT to go to toilet so wind builds up, and needing to constantly pee so when I do go out I have to make sure there is a toilet accessible. So once I have eaten my lunch the lower bowel decides to let rip, obviously being a lady lol, I have to hold it and this in turn gives me stomach ache.
Recently in my area in lovely Cotswolds the farmers were spraying their fields with liquid manure for the years planting and the aroma outside was to say the least a slight pungent lol. I could easily stand outside then I let rip and just blame it on them as believe me I could hold my own with the smell of my manure lol. I reckon if you could actually bottle it I would be able to light up my flat ha ha. Warning handle with care danger of explosion! So you can see the conundrum I face going out is embarrassing for me there is only so much wind you can hold back without an atomic bomb going off!
Wasn’t me honest!
Several years ago now having a reaction in my gums my teeth started to fall out. It was thought this was down to an overactive immune system. I had a few left and decided to have them removed. My rationale was to wear dentures, well I was a pensioner so done well to have kept my gnashers for so long. WRONG, I could not get on with them. After only a month my mouth shrunk and my new shiny teeth fell out. I found it really difficult to chew with them in, so Mike just said don’t bother Zen, I never notice anyway and to be honest you don’t look right wearing them. So for several years now I have not felt the need. So again going out for lunch is embarrassing for me, as it takes me so long to eat safely.
I would rather eat in my own space and not feel embarrassed or a fool. So its down to me really like I said family have asked.
So where was I oh yes, once more I was feeling pretty low, the pain was on a scale 10. Just imagine your body on fire. Literally. Every part of you burning. Its horrible and makes me feel sick. Every nerve in my body is alive and active. This is worse when it’s warm or I am tired.
Sometimes my body feels like it’s on FIRE
It was another morning of feeling despair and pain it was time to get up. Getting up out of bed and slowly stumbling to the back patio door to let the dog out, my mind sluggish thinking what will today bring, I open the blinds (I have a snazzy electric blind you just press a remote and it slowly comes up to reveal the outside. Lucy anxiously and excitedly pressing her nose to the window, “come on mum I need a pee”, finally blinds up and curtains opened to reveal outside. There on the grass eating like there was no tomorrow was a little hedgehog. I was so excited didn’t want to make too much noise as it might scare it off. It was way too intent on snuffling up food probably bird food to even notice me.
My little hog eating
I had no choice but to let lucy out, so sternly I asked her to calm and she did and then she was out the door crossing her legs, and went off to relieve herself. The hog never noticed and carried on.
I had totally forgotten I was tired, in pain with burning as I watched with my face against the window this little creature enjoying its repast of food. Suddenly I shook myself and grabbed my camera and managed to get a few photos. By then lucy was back. The cat had also gone out and came back in with Lucy.
I was shocked for minutes my body was ignored and I felt so much better. Could the simplest thing like a prickly round hog have changed my mindset so easily?
Once I was up fully I went hunting on Amazon armed only with a mouse I typed in hedgehog food, and found a lot of stuff good things he could eat as I didnt want him eating bird food. Next day delivery, lots of food with fly larvae, CLICK and DELIVER it arrived in 24 hours.
So the next day came, the blinds went up and guess who was there yes my little hog. I was so excited to see him again. I took more photos and a video, and Lucy good girl that she is just ignored it. My mind racing concentrating on holding a camera still leaning against the window to stop hand shake, again I actually forgot about my pain. Snuffle snuffle chomp chomp that hog could eat i had given him some dried cat food which it was obviously enjoying. https://youtu.be/JEy-GTiQ2Hg?t=23
Later the next day the hog food arrived so I now had his hedgehog food, and he was there again. More videos, more JOY, it was a lovely morning too. Lucy had come in and so had the cat and I suddenly heard a really odd bird making such a racket. Never heard that before. Then to my right I caught a movement in a tree and there suddenly was a WOODPECKER, omg I was so excited. I managed to get a small video of it it was a green woodpecker. https://youtu.be/b7arQgVLZ40?t=4
I had never seen a woodpecker even in my other very large garden where I used to live. I could just see it on the side of the tree, and managed shakily to get some sort of video proof. Since that day I have seen him several times, he will fly in low suss out the territory if its safe he hops onto the side of the tree, if not he flies into the large bushes by the side of my flat. I always have pigeons they eat like feathered pigs and constantly hog the bird food. I also have a pair of collared doves. So delicate and pretty birds. https://youtu.be/dxmfLGUUOQ8?t=4
Sorry video of woodpecker was very short.
One day feeling low again I looked out of the window and there were new birds on the feeder. I had never seen them before. They were tiny with long tails. I held my breath in fear of scaring them off, but they stayed there for at least five minutes and I managed to get a photo of them. There must have been at least 5 or 6 all different sizes. Again intent on watching them, my pain dissolved into the background.
I had taken a good photo of one of them and was quite pleased and was able to identify them as Long Tailed Tits, there was a family of them. I read that they always fly in families. They visited me several days. I am hoping they will come back next year too. It was so exciting to see them, I nearly called out to my Mike as we used to watch the birds in our garden when he was alive. He would have been over the moon at this visit. He loved birds, and nature and was one of the kindest people I know. Not being able to share this made me feel sad and depressed. It has a two edged sword.
Long tailed tits a family.
An adult long tailed tit.
On the one hand excitement to see such lovely little birds I had never seen before then the realisation that the one person I would have loved to have shared it with was no longer with me.
Since the first day of my hog visit, every morning when I get up and open the blinds I am anxiously waiting hoping to see my hog or even some new bird life. I did take one video of the hog and then in my peripheral vision I saw above a balloon flying overhead which made my day even more exciting. (On the video above).
So what did I learn about all this? I have learnt truly that the simplest of things can be better then any drugs, the simplest of things can make the pain disappear, the simplest of things can lift your spirits, if you look for them they are there. I had stopped looking too intent on wallowing in my own misery to realise that outside my safe cocoon there was still life going on, new families being made, little creatures working hard to survive, everyone of them was busy busy busy, not only giving me happiness but a reason to carry on.
I have bought my hog a house and its tucked under the big bush, although I havent seen him outside he has been seen and when yesterday I checked his house the entrance the leaves had been flattened down, so something had been in there. I truly hope he uses it to hibernate as he will be safe. We are loosing so much of our wildlife now, destroying hedgerows, using poison to kill slugs, and with the weather being so hot they are thirsty.
Take time to leave water out for the birds and the other little animals and if you can afford it, feed the birds. Its been such a rotten year in the United Kingdom very dry and hot and birds and wildlife are thirsty and hungry as for example the slugs the hogs eat have dried up with the heat and this has meant their food source is a lot more limited so they are coming out more in the day searching for food, as they need to pile on the pounds for their hibernation in the winter.
Just look out of your window and watch all the life going on out there when you feel down and sad, it will give you a boost.
If we practice hard enough, we can become thoroughly interested in even the simplest things of daily life, the way a child would. The smallest things would become so meaningful, they might even be worth a few words or a photograph, whatever method you use to capture them.
Author John Dickenson
Gazania Kiss Orange Flame come out today with the sunshine.
Sometimes I wonder what is Multiple Sclerosis? Is it just a figment of someones imagination or a trick by a sick and invisible entity. I mean really how can you be sat quietly at home just chilling out and suddenly for no explicable reason you have a tarantula walking across your forehead! No really that’s what it feels like.
I wont put up an image as I know some people have phobias over spiders. I can remember clearly trying not to panic as I assumed a spider had crawled onto my face, so carefully without panic got up and slowly scared out of mind and hanging onto my hand rails for dear life, walked to the mirror located in my hallway. Expecting to see this long haired creature on my forehead instead of which there was NOTHING! I could still feel it walking across my forehead. Jeez I must have been going insane or something. It was a horrible sensation. Quickly I washed my face, and the sensation did go away. It was warm I remember that.
This was a madness and period of my life when I suddenly was invaded by ants, and nits in my hair, and fleas running across my face. I got more exercise going to the mirror to see all these crawly things but never found one.
Invisible nits which made you scratch your scalp raw. Boy that Joker card was aving a larf with me. What else was he going to chuck at me.
I did have a giggle though when I found out what this sensation is called. Formication, my brain being my brain immediately went to the naughty step lol, but basically it’s a type of paresthesia. Paresthesia happen when you feel sensations on your skin that don’t have a physical cause. Paresthesia can take many forms. These can include burning, tingling, or numbness. With formication, you might also describe the “crawling” sensation as feeling like “pins and needles.” Formication is also called a tactile hallucination. This means that you’re feeling a sensation that has no physical cause.
Oh yes also Withdrawal from alcohol or drug use can also trigger formication
So knowing what it was and it had a name kind of mind it easier to cope with but at one point I was totally paranoid thinking my house was infested with little crawlie things. Eek.
Another wonderful sensation was the biting bee. I was actually in the garden with my chickens when I suddenly felt a bee or wasp sting me really hard, jeez it made me jump out of my skin and my husband came into view just as I was screaming in pain, crying “omg omg omg” I have been stung by something, as I hastily started to drag my trousers off myself trying not to fall over to find the offending perpetrator of my body. Mike came rushing up to me to help, and between us we managed to get my trousers off but nothing fell out onto the floor and there wasn’t a mark on my leg where I felt the bite.
No way how could that be? (bee get it lol).
This was getting ridiculous now. I was really being dealt the Joker card, what was going to come next I wonder.
Have you ever stood say in the kitchen and feel someone is looking at you from behind? You just have that feeling that there is someone there and kind of hold your breath because your scared to death to turn around, then suddenly you actually feel someone push you? Now it was either a spirit and I can assure you it wasn’t an alcoholic one or it was another weird symptom perhaps some sort of spasm, but I swear to god I had been pushed although I never actually moved.
Ah the joys of MS.
A new one for me was trickling cold water down the back of my legs. Yep this is true. I again would be minding my own business and going about my day probably just musing about life or something similar when suddenly the back of my legs would actually feel wet and I could without doubt feel what was like water or wet going down my leg. Well for someone with a disability I could sure move when the needs must and lucky for me I was stood very close to our downstairs toilet. Making a Beeline for that as I assumed without realising it and with some horror at myself had peed. Expecting to see urine soaked underwear and the back of my trousers wet there was NOTHING. Nope all dry and nicely groomed where I left it all in the morning after I had my shower.
Now this only really happened a few times and it was earlier on in my journey. I did read about a disease that is mistaken for MS or vice versus called Arachnoiditis, but for me I feel as that is caused through nerve problems in the spine perhaps this had caused it for me. I belong to MS groups and have read others who have also experienced this with MS. If it had happened more often then perhaps I would have been worried, but I did mention it to my neurologist and he just looked at me and smiled and with a reassuring pat on my hand told me it was all down to my illness.
Weirdly enough one of the first symptoms that presented itself to me at the beginning was the strange sensation of wearing wellie boots running through a frozen field with a hole in your wellie, and freezing water making your toes feel like they had frostbite. Now that was a great one and I was convinced if I looked at my toes they would be encased in ice lol.
I did mention these things to my neurologist who said they were all forms of parenthesis.
To be honest writing this down I am feeling like some sort of nut job lol. I mean how can all these weird things happen to me or do they happen to others too. I don’t remember playing a game of cards or actually being handed the Joker card, but somehow somewhere I must have really ticked someone off, as even though these symptoms were not in themselves serious they were driving me mad.
I know I am not the only one who suffers with all these things and thankfully that is kind of comforting to know.
One of the worse ones I had though was the pain in the front of my shin. Usually my weirdo symptoms exhaust themselves very quickly and disappear as mysteriously as they came, but the shin pain was horrific. I remember at the time pushing myself to walk more with my dog. This was early onset. When I got home and was just resting on my recliner the pain started. I swear to god that someone an invisible entity had stabbed me in the front of my shin with a large knife. The pain was so intense I grabbed hold of my shin and shouted out and nearly scared mike to death. Now this pain lasted days so bad was it I really had to see my GP. As usual I got THAT LOOK, and yes you guessed it well it was down to whatever was going on with me at the time. I was told to take paracetamol and rest.
Thanks doc, so I did, and roughly 2 weeks later it finally had gone, just like it came.
Oh dear the bee is back. Yep I must have wished it on myself. At the moment living in my little sheltered flat I am trying to make an area outside which makes it more homely or like the home I left. On one side is a border which was so neglected. I had asked if I could maintain it, and was granted permission, so all the old overgrown plants which were so neglected were removed by my gardener, and the ground was given a good feeding. I decided to turn it into a little bee garden by having planted only plants that would encourage bees. Within 2 weeks I saw my first bee and was quite excited I know right I live such an exciting life. But there was the little bee, flitting away busy from Borage to flowering Thyme, gathering pollen to make the honey.
Since then I have had more and more arrive and I believe its like one is the scout who goes back to a hive and communicates that there is a bounty to be had follow me boys …………
Bees off to feast
Ah where was I oh yes, the bees starting to come to my area and I love watching them always so busy. Then just a few days ago the biting came back. Sting, sting sting……….. on my knee of all places really bad. I did lift my trouser leg up but in my heart I knew it was just an hallucination another Joker card, like he was saying “you want bees………….well your going to get bees”! There they were like magic back on my leg biting me.
Fleetingly in my brain I wandered is it true you get what you wish for? I am not scared of it now though, and just ride it through until it decides to try something new the last attack was yesterday after being at the neurologist and the heat was exhausting, so I wonder what will be on the cards today…………………..!
If you’re reading this with MS and suffer similar please share as we are not alone.
I am disabled right, according to The Expanded Disability Status Scale (EDSS). The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by member of the medical team or whoever is dealing with your disability. https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss
I believe at the moment my scale is 6.5 and I am aiming to stay there as long as I can.
6.5 Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting. I use a rollator for me is the same as two canes.
I want to live as good a life as I can. I bought myself an electric wheelchair and my friend would take me out in the car and we would go off shopping. I remember one particular day we were in a famous store to look at some clothing. In minutes i was totally tangled up as the rows of clothing were not wide enough for me to negotiate through the aisles. It was really frustrating for me. So we went to another shop and similar happened.
I was beginning to think i would never be able to buy anything, and really sadly that is why i confine myself to the house and buy online as it is so much easier, but it does limit my life and isolates me even more.
Oh then the supermarket smack bang in the middle will be a load of metal baskets which stops you again from moving around them. I mean really.
Ok so off I go for jolly jaunt around town. There is a pavement with a canter lever which slopes right downwards and you have to take you life in your own hands to negotiate it. Not only that it also has Blister tactile squares, for the blind, and this makes it even harder in a wheelchair or scooter. I have nearly come foul with this bit of pavement and ended up in the road, lucky for me there was no cars turning right or left into it.
Ah then you get to the shops and you want to go into them even the bank on the corner before it closed had no ramp for me to get in so i was excluded from going in there so ended up once again relying on the Internet to do my banking.
Even in 2019 shops are ignoring the rights of disabled people who have to use tools such as rollators, wheelchairs and scooters. It is hard enough being disabled but why should we not be able to go into shops easily. Many never provide you with wheelchairs which would help a lot.
Then I thought to myself i really would like a new scooter one with a cover over it so when it rains i can still get out and about. So I did a lot of research, and found one a really nice scooter with a canopy which can be moved back and stored behind your seat, and if it rains, you can simply un-pin it and cover yourself (Scooterpac)
Sounds so easy doesn’t it. Like having a convertible and taking the top down or over yourself.
You can choose to have the cover on or off. The scooterpac is a great invention to be honest, as the idea is it can be stored behind your seat then when it rains you simply pull it back over yourself.
So when you watch a video of it well it looks pretty darn good and easy.
So they use a young women on the video I watched, she made it look all so easy, and I suppose to be fair if your not weak on the upper part of your body it really would be.
The first thing you have to do is take the cover off the scooter pac which was exhausting as it was very tight. It’s there for protection and to keep the actual top tidy and secure.
Now why oh why oh why do they not use a DISABLED PERSON to show the demo? I mean seriously. I was stuck and it was exhausting as i had to pull this canopy over and it was high and my arms were tired and exhausted. To fold it back away did not work for me as the person who had fitted it put the sides on the wrong way. Once that was sorted(I had to get the scooter company out as no one could do it not even healthy people) trying to fold the sides and secure them to the back was really difficult for me. Oh and having to put the cover back over the top cover of the scooterpac was a nightmare really hard to do. Very tight and I ended up getting my young lad who was decorating my flat at the time to do it, and honestly he will confirm even he had a struggle with it.
If your not too disabled the Scooterpac is a really great idea. I would have loved it but trying to put it away was just too hard for me. A really great idea i would highly recommend it, but if your very disabled you would be better with a cover that stays on.
So well now I had my scooter sorted it was time to go out into town. I was excited but then I hit the first obstacle?
Getting out of the park where I live.
Both ends of the park you have to negotiate one of these.
The shape says it all, my bottom can pass but the top of me has no chance. The large gate is locked also only for council.
Let me rewind. I need to go down into the local park to take the dog for her walk, and before I changed my scooter for a bigger more reliable one, I could go into town even by negotiating the above bollards. But the access to the park even that is a chore as there are two sets of gates. The last gate is a nightmare as its tall and you have to find a way to stand a bit to open it then of course it opens INWARDS not outwards (I mean really who designed these gates for disabled living quarters). They obviously didn’t have a clue. Now I have my dog with me, and doing this is heart stopping as I am always frightened I am going to run her over, but she seems to have learnt self preservation thank god.
A picture of my first obstacle double gates which you have to negotiate on your scooter.
First obstacle a gate on the right which is surrounded by hedge. Sorry videos dont work anymore
Next obstacle is a tall gate as I said above it opens inwards. See video above as I have included it at the end of the video. Now once you get through it safely and close it behind you then you are in the park. BUT If you want to go into the town you are immediately stuck as the barriers are not big enough to allow me through (I am not the only one who lives in my flats who cant get out this way).
This is what you come up against its access to the town well its a barred access to the town as i cant get through it with my new scooter.
Once we finally get through the tall gate though if we are just going for a walk we have a lovely time going around the park and she enjoys it.
The barriers. Now the idea of these barriers I believe is to stop motor bikes and bikes. or odd shaped people from entering. WRONG, as every day I see bikes in there and on occasions there are motor bikes at night using the grass as grass track race. The point is down the bottom corner is an area which is OPEN but has a rock in the middle so I am not sure I want to try going that way but motor bikes have no problems.
Surely there must be another way of stopping the nuisances but also allow the disabled a right of way to live in their town without difficult obstacles I wonder how other towns deal with these issues. Please share good practices please.
OK YOU COULD if you wanted to go the long way round. It’s a long path which is so uneven and full of holes and dips and slopes, you take your life in your hands. By the time you get to the bottom and closer to town you feel like you have been in a roller coaster. I come home feeling awful. Even with a scooter with good suspension you sure get a bashing about and I wear my seat belt as sometimes with the slopes you feel like your going to topple over (I know that I wont but its difficult when you are trying to stay safe with pedestrians around and a dog who is walking by your side. When I finally get home boy I feel like I have been in the gym as everything aches.
Going long way round.
9 minutes walking the path is very uneven and hard on your back
quick way is actually quicker then map states. I just go through the bottom tall gate then a few minutes into the town, but i can’t get past the barrier anymore with my new scooter.
Then the scooter its really well made. Excellent. But it is too much scooter for me as I am very weak in my arms and found it hard for me not to loose grip on the tiller as it was very light touch and any bump I would loose grip which is quite scary.
Any manufacture of disabled products should ensure all their products are tested or displayed with disabled people. Every persons disability affects them differently.
Councils perhaps you should get someone not disabled to road test your towns, and shop keepers do the same too. Just walk or ride in my shoes for one day and you would soon learn just how disabled friendly we really are. Ok you get points for certain things but ultimately you are excluding us from having a normal life as we could possible have, as really its off putting struggling to get in shops time consuming and frustrating that a lot of disabled people now dont bother and spend more time at home or on their computers buying on line, rather then going to the local shops, because at least buying on line you get treated with respect and every delivery driver i have come across has been amazingly helpful and kind.
I never asked to be disabled I just want an easy life, i don’t want nor do i need any more barriers thrown at me. Next time you want to design something for example like the barriers in parks just remember that a disabled person may have to negotiate it. You should think disabled first before you decide to do these things as there are 11 MILLION people just in the UK who are disabled.
Sadly everyday more and more people are becoming disabled and its up to local authorities and manufacturers to get mobile and disability friendly in order to allow us to have a good and enjoyable life, not one which has barriers chucked at us like bad pavements, poor management in shops and unfriendly disabled aids which have not been tested by the exact people they are designed for.
I have thought long and hard about writing this but it is no good it is really bugging me. I hope that whoever reads this does not find it offensive its not meant to be, but its my way of trying to find a perspective into something that is constantly being dragged up on forums and groups.
What is it? Hum well have you ever gone out say to the shops and noticed anyone looking at you in an odd way? Maybe you think why is that person looking at me like that?
Nearly every week I go on forums or groups and there will be someone on there literally “spitting feathers and full of indignity”
Angry and indignant (not thirsty). Drawing by Hannah Scully .
Now you would think World War III had started. I would have an image in my head of some person with arms under their breast standing there and taking real offence………. I am drawn in to the conversation as it seems so intense something awful must have happened to induce such a vitriolic and angry post.
It would sometimes start with…….. “How dare they look at me like that? (Hum reading on thinking this might be juicy), who do they think they are for gods sake”! I could literally feel the fire of anger coming off the screen…what had this person done to illicit such a response……..so holding my breath I would carry on reading.
“The nerve of the them. I was just walking into the supermarket with my walking stick, and this moron standing in front of me, looks at me like I am diseased or something and steps out of my way and the look they gave me was disgusting like I was dirt under their shoe, just because I am disabled and use a stick how dare they look at me like that………….”
I know my brain is very slow and it would take a few seconds to comprehend what on earth this person was moaning about.
It would seem the person had some how purposefully or inadvertently given the impression that they found the look of their disability as distasteful or not real, perhaps the person with the stick was some how playing games and just doing it to get attention or money off the state, who knows, but the writer of the piece would be so mad one would think they had been physically assaulted.
I have had a think back about times when my disease first got so bad i needed a stick and an arm to lean on. I would go to the supermarket and by the time I got to the check out would be exhausted and out of balance.
I had often stumbled and needed to hold onto my carers arm to stop me falling. Yes I would admit that someone in the queue by the side of me would look at me with a look of sadness which would prompt me to say “oops I need to put more water in my gin in the mornings” and this would break the ice and the person would smile and giggle with me which broke the tension of the moment. I would always turn these awkward times into a scenario where one could laugh and smile alongside of me. My illness never made me sad, frustrated yes but never sad.
I was proud actually that even though I had a life changing disability that I could still go out and that I could still quip about it and interact with people to show them well there is nothing to be scared of not really, hell no I may have MS but I am not dead yet there is still life in the old dog yet lol. Below just a few photos of me over the years of having MS, I just got on with it, and never bothered about what others may have thought. I never stress over what I cant change.
I kind of felt sorry really for the posters as my feeling is they were not angry at this person but more angry with themselves and what was going on around them, and it was their way of dealing with it, by focusing on a tiny thing that may have happened and turning it into a major incident. Maybe a need to be noticed perhaps, for people to feel sorry for them, or even feed their insecurities about their disease.
After thinking about it I realised that people with MS or any other chronic illness can be very insecure, and some of them needed to be supported but didn’t know how. So they use the media to feed it to feel loved and supported.
You could almost imagine them sat in their room lonely and sad, lapping up all the answers of support, lapping it up like a cat would lap up a bowl of tasty cream. The person who had unwittingly looked that way, would never know that they had caused such a drama which would be unfolding and getting more and more intense and down right nasty towards them.
I am sure they would have been horrified. Its almost like someone being stoned like in the days gone by, but verbally a trial by media. It would almost become mob rule as other posters would get wired up and angry for the first poster.
In days gone by people would be stirred up by verbal communication and things could get pretty nasty. Now its all down to lonely people living in their own seclusion feeding off each other the object of their hatred was not known or seen, but it didn’t matter not really as they could feel for the poster as they too were in the same situation and perhaps similar had happened to them too, so a simple moan could turn into hours and hours of posts from all over the world.
With the Internet you can start a post at night in the USA and it would be picked up some time in the morning for example in the UK, then posters would pass on their thoughts, and come the afternoon in the UK it would be the morning in the USA etc, and so that one small post could be doing the rounds for many many hours all over the world and getting bigger and bigger. At least in times gone by you reacted and it was done and dusted there and then. I feel now its so much more unhealthy. We tend to hold onto our anger and never let it go which cant be good for us surely.
Then just when you thought it had calmed down someone else would find the post and kick it off again, and indignity would reign once more around the satellites…….
Stone throwing the old fashioned way.
An innocent glance taken totally out of context had been used to feed someone else insecurities. Perhaps the indignant person needed to GET over themselves and find a life………yes they were disabled they had been given a rotten calling card but they needed to learn to deal with it for themselves not stir up a emotional feeding frenzy by others in the same place. All these people responding for me feeding the insecurity were the same sadly.
Life with a disability doesn’t have to be the end of their life but the start of a new one with lots of challenges yes, but we have to choose our paths in life. It is so much easier to take the easy path of just not dealing with it, and passing it all onto someone else and live the rest of our lives indignant because someone LOOKED at us in a weird way and make a huge thing about it which would feed us for a week and prop up our fragile egos.
As Humans I believe we are an innately self-absorbed species. Partly down to the fact that we have an instinct for survival. Could this person who is sharing this awful experience on say Facebook be using it as a way to survive another day. Using this exaggerated incident to enable them to cope through their own day, isn’t this a bit selfish really?
This could be dangerous unintentionally. There are a lot of people now living with a Mental illness who also have alongside a chronic illness they have to deal with. By sharing this story it could unintentionally stir up someone else who may not be as equipped to deal with it. It could even stir up hatred to all things NORMAL.
We have no idea how fragile minds are and the Internet is now a breeding ground for many things some of them not so good. By Normal I mean a focus can then turn onto someone who unwittingly one day looked at someone and without realising it set off a chain of events, because they appeared to be a “normal” person with no visible disabilities…………….
This doesn’t mean they have no disabilities just that the poster couldn’t see any, but perhaps their innocent look was of sorrow, or they may not have been looking at the person but through them as they were reminding themselves of something that happened to them that day. DON’T assume they were looking at you in a bad way.
Perhaps if you are reading this just be aware that if there is an issue with someone LOOKING at you in an odd way, look at yourself, and how you deal with things in your life at that point in time, and keep it to yourself, as innocently you could be putting other peoples lives in jeopardy.
You see that look, the best thing is to Stop – Take a deep breathe – Think of something funny – move on.
We all need to learn to GET over ourselves, yes we are disabled, but we are not a unique species with special privileges in life, we have to learn to deal with what we have been given, and not expect others to prop us up, as these same people may be more disabled then we are, more fragile then we are, and more scared then we are.
Let us all try to be a bit more tolerant of each other. We are humans and we are all just trying to survive the best we can, we don’t need to be stirred up and stressed to support someone as it just makes their day worse too.
Your needs shouldn’t always come first. Just remember whatever you post on media can have a ripple effect that leads to a tsunami, be mindful that others may be way more fragile. Just try to look at the funny side of things. Make yourself laugh, and the incident will just fade away.
I have another saying too when someone says to me “well you look really well” and I quip back well why shouldn’t I? I am not ill I am just NEUROLOGICALLY CHALLENGED, and it makes them smile and they know I am ok.
If you really want to be happy, you need to take a step back. You need to engage with the people around you, and with the rest of the world. Because this individual focus really isn’t working for anyone. Certainly not for you as it just leaves you having a bad day and a constant reminder inadvertently that yes you are disabled………. Turn the computer off, get out of the house, sit in the sunshine, do something, don’t focus on the bad things in your life, look around you, there is beauty you just need to look for it.
Beauty is everywhere you just have to open your eyes.
My Journey with MS 