MS for over 70 percent of my life
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I am 63, born in 1954. I have lived with Multiple Sclerosis for 45 years, that’s a scary thought. It started in 1972 but I was not diagnosed until 1995. It morphed to secondary progressive or advanced MS in about 2000. I took medical retirement in 2012. I have had MS for over 70 percent of my life.
MS for over 70 percent of my life
I have lived with this progressive disease for 45 years. That’s one heck of a long time. MS did not really affect me until 2000. It was about then that my clumsy left foot started to evolve into dropped-foot. I had to have prisms put into my glasses because of double vision. It was about then that my bladder became a significant problem.
Was I lucky?
After diagnosis in 1995 I did not suffer from the dreaded fatigue issues or “cog-fog”. It was only 17 years later that these problems forced me to take medical retirement. I still lead a busy life. I regularly go up to London, run this website and I am a service user. Now I must do things at my own pace.
Visible disability
Other people see me and realise I’m disabled. They see me wobble as I try to stand up or walk with a rollator. It’s amazing how people will help me when I ask with a smile. People will help me with my mobility scooter especially when I tell them how light it is. The skill is in selecting the right person to ask. If people see me struggling they invariably stop and help.
The world moves on
We all know MS is a disease that gets worse and worse. I have had MS for over 70 percent of my life and I have learnt to cope with the problems it throws at me. Just recently there has been a definite change in my life with the not-so-little MS friend.
I know I am disabled. Other people can see that I’m disabled. The strange thing is that I have never seen myself as a disabled person. Instead I’m someone with a few handicaps. Just recently my perception of myself has changed.
Now I can no longer keep going and going and going all day. I have to pace myself, take little rests. Even have a snooze or maybe read the paper. If I have a very busy day I will pay for it in trumps the following day. Then it’s like waking up with a hangover, I think I can just about remember a real hangover.
Increased visibility
The visible disabilities were obvious to others but invisible to me for years; not any more. Now I am acutely aware of my disabilities. Perhaps it’s because I have suffered MS for over 70 percent of my life.
Is this a good thing?
No because I am unable to do as much as I would like to do and no one sees invisible disabilities.
Yes, now I have more control over my life. I can do what I want to do and enjoy doing and less need to do what others want me to do. So its a better quality of life. This is definitely a good idea.
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April 2018
It’s strange this MS disease – I was diagnosed with ‘mild MS’ in 2000, yet 5 years later had to give up work and now – aged 64 – I’m in a wheelchair with 2PMS. Is it because I was never prescribed DMTs? Or maybe our metabolisms or attitudes? Guess that is where the multiple comes in. All the best.
Hello Roland,
I wish I knew why the severity of this wretched disease varies so much from one person to the other. The consensus now is that when diagnosed you should have a powerful and strong DMT. In 2000 and for the next 5+ years there was only the less strong versions like Interferon. Now there are over 12 available, some very potent (https://bit.ly/2IO6Svc) but nothing authorized by NICE is a cure.
That’s all too late for both of us. If you get a chance do look up the MS Chariot trial. I hope they will be able to start receuiting people sometime this year. It will include people who use a wheelchair and have progressive/advanced MS. It is a part of the #ThinkHand campaign, I have written a blog about the launch.
I’ve been following the MSChariot trials and the #ThinkHand campaign via this and other sites. Sadly, although I slipped through the NHS cracks for the first decade, I’ve now moved to the US where the cracks are chasms needing too many dollars to cross. But I can hope and fight.
Hello Roland,
Just got to hope and fight, its the only way
So true – thanks, Patrick.
So you start the notice things in 1972 but we’re not officially diagnosed until 1995. What was going on in the intervening 17 years?
Hello David,
In the intervening 17 years not a lot happened. I had 2 further relapses that coincided with stress and illness when trying to run my own business as an antiques dealer. I put the problems down to stress plus they were one off events. These went on to become significant bladder problems. I had not heard of MS until I was diagnosed. Remember this was all before the days of the internet. In those days ignorance was bliss.
When I had RRMS my problems were insignificant and I dismissed them. I only went to see my doctor/GP with double vision on my brother’s insistence. The rest is history
Hello David,
I’m sure I replied yesterday. Not a lot happened between 72 and 95, 2 bladder relapses that I put down to stress and recovering from heavy colds. I had never heard of MS until diagnosis when I had double vision for an hour or so and then it went away. Basically I was a fit and healthy married man, did long dog walks
MS did not impact my life is a significant way until about 2000 and remember back in the day there was no internet.