Living With MS

I have been living with MS for around 27 years but i have never really spoken about it or discussed with anyone. I have told friends and family that i have it and a few others but there is a difference between telling someone that you have MS and explaining your feelings and attitude about it.

I am not a writer, so i apologise if i ramble or if my grammar is rubbish but here goes.

My story really starts after i had had two relapses and had a series of tests ending in a spinal lumber punch.

I was asked to attend a meeting with a Neuro surgeon and to attend with my wife. The Surgeon informed me that i had MS (Which at the time i had never heard of) and then proceeded to basically tell me my life was over. I couldn't have a hot bath, i couldn't have a cold bath, i had to take one week of in five at work and so on and so on. He also told me that i had to do everything he said because he was the expert. My 27 years of experience now tells me he was full of BS.

I went home and felt as though i had been hit with a sledge hammer, its a bit like having your head stuffed with cotton wool. No real thought processes going on, just a feeling of "what now".

I can't really remember much of the following few weeks but my next memory is of going to my mother-in-laws house and when i arrived she had some other family members there. Everyone stood up and offered me their seat.

I basically ignored everything the specialist said. Particularly as i was self employed and life went on with no problems for around 8 years. During this period i had not been given any medication and i didn't suffer from MS except some tiredness once in a while.

Before the Tests i had two bouts of MS both times suffering from various problems with my legs, such as hyper sensitivity and both bouts lasted around six months.
When i mentioned before about everyone at my mother in laws standing up and offering me a seat it was a pivotal point in my life. Its really hard to explain but as thoughtful as everyone was being it seriously pissed me off. I may have been diagnosed with MS but i was not really suffering from it, all my symptoms had cleared up, so i was not an invalid and i did not want to be seen as one.

Go forward and i can remember being on holiday in america with my two children and i started to go into relapse and wouldn't you believe it but it was in my legs again. Those that know about MS will probably also know that the more relapses in the same place and the possibility of permanent damage is increased.

The relapse was not on the level of previous symptoms but after aound six months i new that my legs where never going to work properly again. When i awake in the morning my feet feel as though i have just spent the entire day shopping and from there it just gets worse as the day goes on. The pain also goes up my legs to around the tops of my thighs but my feet are the worst. That said my specialist said there is nothing they can do about it, so no medication. Which actually i am happy about.

The problems with my walking where making parts of my life difficult so my wife decided we needed a wheelchair. She was right of course, she always is. I could no longer take my children out for the day, Zoo's and parks where now a no go. Museums in particular where impossible.

So a wheelchair it was. It is important to remember that at this point my problems where only in my feet and this was not entirely debilitating, just when out and about. However, i will refer to the point of everyone getting up for me and offering their seat. This sort of thing began happening everywhere and those closest where the worst. I say the worst because sitting down continually is not always a good thing.

I can't say it was a mistake getting a wheelchair but my life certainly changed and in my opinion for the worst. That's not to say it is all bad because without it i couldn't spend so much more time with my wife and kids outside the home but the downside for me was severe.

Over a couple of years my ability to stand and walk unaided got worse and worse and i couldn't understand it because i was not in relapse. I was and still am self employed and i was now in the position where i could not go out to jobs and i had to subcontract the work. This was costing me dear and almost made working a waste of time. On top of which i was putting on weight day by day.

I can still remember quite clearly the day my wife came home with a new pair of trousers for me with a waist size of 38 inches. No way was i going to wear them, i was so angry not with my wife but with me, with the MS and with everything else i could think of.

Anger, frustration and a need to do something about it got me of off my backside and within the day i had driven to a gym and registered my self. I started lifting weights and running. I could run, what the heck, how did that happen.

It was amazing, i could run. Not far or for long at the time but i didn't suffer for it. I worked out that the pain in my feet was worse when standing, so no queuing for me, slightly easier when walking but still not far or for long but running had no ill effect, either for short periods or long and eventually i was running for an hour or more. So for me if its a question of walking somewhere or running, I run!!!!
The gym completely changed my life. I came to understand that even though i had problems standing i could still go to jobs outside of home but i just needed longer to recover. A long drive meant a day off from anything, and a day on a job meant another day of rest to add to the first.
The gym and the realisation that work and life simply had to be managed changed everything. It had taken so long to understand this and i put it down to being told continually to sit down and someone else will do it for you.

Family and friends simply want to help but i have realised that i have to be firm and say no, let me do it and if it upsets them, then so be it. I have to do as much as possible even if sometimes i end up suffering for it.

My wife bought me a weekend in Haverford West, the south west corner of wales doing climbing, kyaking and coasteering for my 40th birthday it was something that just a few years before i could not have dreamed i could do.

That really brings me to the present and to say that over the last 10 years or so i have done so much. I am now 53 years young, i train in the gym with my 23 year old son 4 times a week and i lift more than him in every exercise.
Twice a week i go bouldering (indoor climbing) with my 18 year old son and although i can't keep up with him, i can still climb for a couple of hours and to top that up i still run twice a week and in the summer months i cycle of road for hours at a time and i now fit a 32 waist trouser.

I have had only a few MS relapses since starting training about 1 every 5 or 6 years. My eye site no longer works properly and i suffer from tiredness often but even though i push training to silly lengths it has never brought on a relapse.

I realise that every MS sufferer has different symptoms and varying amounts of damage and problems and i don't expect every sufferer to suddenly go to the gym but if my story encourages others to try different things, maybe to go out and do something they always wanted, then please don't even think about it, just do it.

And if you have recently been diagnosed and unless you are very unlucky, don't think that this is the end, simply learn to manage 'your' MS and continue to do what ever you want to do.
ClimberJeff ClimberJeff
56-60, M
2 Responses Nov 13, 2013

your story is brilliant, thanks for sharing. It also saddens me because I have spent the last 3 years watching our neighbor deteriorate because he is letting MS "take him". He lives alone and hides out in his home 24-7. The rare time he calls for help he always says "I don't want to be a burden" he has called me about 5 times in the last 8 years. He has told us he refuses treatment or help of any kind beyond the odd call as I stated. I had no idea you could "manage" it as you have opened my eyes to. Thank you and rest assured I won't be going to preach this to my neighbor... I am not that kind of person.

Thanks Azaliea, I wouldn't preach but maybe a slight nudge won't do any harm :-)

good point it's sad to watch him.

Thank you Jeff, this is very helpful and encouraging. I have been wondering how far I could push myself at the gym -- was just diagnosed six months ago. Your story is inspiring and hopeful. I wish you and your family all the best.

Hi graniteyarn, (I am assuming that's a colour of a wool??), If you wish to talk to me at any time, no problems. I will make you a friend and you can always message me.