I do feel isolated by my multiple sclerosis
MS affects in so many ways
As my MS gets worse my world gets smaller and smaller. My MS and I cohabited quite happily for 35 years. Okay we had the odd problem but basically we had a healthy relationship. About 10 years ago the impact of MS on my life started to grow. Now I do feel isolated by my multiple sclerosis.
Medical retirement was a life changing event
Suddenly in 2012 medical retirement grabbed me and won. I had to change because life as a contract computer analyst programmer was now history. Who wants to employ a 58-year-old man suffering from multiple sclerosis? The working-life rug was yanked out from under my feet. Suddenly I was disillusioned with the world, so much of my optimism snuffed out.
Other changes
There were other numerous changes as well. I too felt lonely, isolated and at times a burden. I had to navigate the benefits system an experience I found demeaning and humiliating. There was also the grim realisation that there is nothing available in the medical world to combat advanced multiple sclerosis. Incidentally this is still the case.
Those with MS are twelve times more likely to feel isolated than the general population
I can see my own problems
A face plant was replaced by an inability to walk unaided. I was also living with emergency pit stops at a loo. I had difficulty in finding motivation. Physically and mentally I felt as if I was treading water but I desperately wanted something to happen.
Under the bonnet
MS does have a profound effect upon my quality of life. It makes me feel socially isolated. Now I cannot do things that other people take for granted. I don’t go around with a banner announcing my disabilities; no piece of paper is big enough. These invisible disabilities are growing.
A Dalek cannot do stairs or escalators and neither can I. That knocks out a huge chunk of the London Underground and numerous railway stations. My fingertips are getting more and more numb plus fine finger control is now quite a struggle. Turning over the page of a book is very difficult and my writing is an illegible childish scrawl.
I do feel isolated by my multiple sclerosis
Sometimes I really do feel my world is shrinking around me. Everything takes longer, it requires more effort and so much more planning is necessary. I often find myself fighting the ‘oh I can’t be bothered’ feeling that’s now threatening to dominate my life. Finishing this blog is a typical example.
Social capital
Everything demands more effort and determination from me these days. Despite my shrinking world I do bump into people in town and have a chat with them, all people I have met in the last few years. I’m playing duplicate bridge again and that definitely uses the brain. I even want to play twice a week.
Think positive, I’m an ‘onwards and upwards’ though I do have my occasional dark day. Sometimes I do feel isolated by my multiple sclerosis or is this just plain old cabin fever?
Thanks to Cannedpictures for the film
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August 2019
Hi Patrick, your story is a very familiar story to my own.
I to co-habited alongside MS quote happily for, a lesser, 25 years until recently and my lack of mobility, general aches and pains and an increase in feeling down my LHS from head to toe.
I too am currently going through the mine field of the benefits system as well as negotiating with my various pension providers, and my current employer, for early release pensions and also negotiating a release from my employer on health grounds.
I feel very old at 50 but have the bonus of a 9 year old daughter to keep me grounded.
I feel that my memory problems are at times killing me more than the direct threat of MS.
I’m currently busy applying for a grant with the Royal Air Force association for an occasional use wheelchair for days when the lethargy wins and my Wife is unable to lift me out of the gloom.
Your story helps knowing that I’m not on my own despite spending 4 out of 7 days on my own all day and only have the one day out to the MS society for a much needed health and well being class.
But, do you know what?
I refuse to be beaten !!
Thank you for the inspirational words
Hi Tim,
There seem to be a sizeable number of people who are somehow trucking along with advanced MS. Everyone seems to have their own problems and have devised ways to deal with it. I admit I was quite lucky to survive until I was 58 but there is an awful lot of luck involved.
Good luck and just keep on fighting
Swank diet, Win Hot method.
Hi Stuart
Personally I prefer drugs and bloody mindedness. I’m on MS-Stat2 clinical trial and there will be MS-Chariot next year and that’s worth a punt
Thanks for a post that reflects my ambivalent life, Patrick. I’m physically isolated but as a writer I’ve discovered a supportive online community to sustain and challenge me. My brain functions, albeit in strangeways.
Hello Roland,
I’m lucky to live in the middle of a town and it is only a 35 minute train ride into Euston station, London. My mobility scooter has made so much accessible for me so luckily I am not physically isolated. At home I find writing blogs for the website very therapeutic as well as helping me to live successfully with my MS.
My isolation came about because MS and life recently threw too many problems at me so I just hid under a rock for a few weeks. Luckily I’m emerging into the sunshine.
Thank you for this post, Patrick. Although our medical problems are different, you speak my words and think my thoughts. Reading your blog is helpful and inspiring. Thank you!
Hello Kay,
Thanks ever so much. Some of the problems with being disabled are quite subtle but have a huge effect effect upon quality of life
I too am isolated. Aged 68 I find that anyone around of my own age sees me as their captive audience for their own health worries and situations, most of which I do not want to hear about. So possible my isolation is my own choice .
I suggest you joing the local MS Society and the MS Therapy Centre, Age UK, your local history society and all sorts of local orgs. There you will find lots of people who are in the same situation as yourself and may be bored witless by it.
Hello Sue,
The sense of isolation has only occurred in the last couple of months. Suddenly more acutely aware of my disabilities and fresh problems have reared their ugly heads. As anyone gets older they find it harder to make lasting and deeper friendships but any form of interaction with other people is usually a good thing. I’m usually a busy bee so the forced inactivity made me realise what it is like the so many other people.
Greater involvement with activities in my own town is something that I have given a priority. Many thanks your ideas.
I am also 58, but recently diagnosed with MS. I put a lot of effort into making sure I see people, by writing poetry about MS and going to writing groups. But the major difference is that I live in The Netherlands where every station has a lift and I can use a very inexpensive disability taxi service. It makes a huge difference! I would say – maybe find a hobby that is feasible and you can share with other people.
Hello Siobhan,
Dutch train stations are superb for lifts. I play bridge, do the website and go shopping every day so I do keep busy but last few weeks have not been good for me. In the UK there is a system where doctors can prescribe a social activity for people who are isolated, mentally and geographically but it is patchy. Some people say that consultants should be able to do this as well