My quality of life and MS.

The impact of what MS removes from my life.

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.
COGNITIVE including uncontrollable emotions.
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 technigue is: 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.


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