They say they have MS and run a marathon
You say you have MS and run a marathon. I think that is a contradiction. Should someone who runs a long way state they have MS? Do they understand what MS is really like?
It’s the elephant in my room
24/7 it stands over me, watching my every move. This elephant is waiting to catch me out, take my life away.
They say they have MS and run a marathon
Has the runner ever woken up with an MS hangover? I have not drunk too much. Instead I have tried to lead a normal life and do normal things. The prize is total physical burnout for one or two days.
Has the runner ever pissed in their pants? If you have MS it can happen quite suddenly. A small rum or brandy at the end of the night while watching telly and suddenly I have to go to the loo. OK I manage to get up from the chair, leave the living room but I don’t always get to the loo in time.
This really is MS
Does the runner need a walking aid? I guess they can still hop, skip and jump. Also I suppose they can carry a tray of glasses or a tray of glasses. I can’t.
I am quite sure they can get dressed standing up. People stand while balancing on one foot while putting a boot onto the other foot. Meanwhile I had to make a quick dash to the loo in a wheelchair.
Council grant
DLA, PIP, Medical Retirement are not a part of their vocabulary. I can only just manage to get into the bath to have a shower. A wet room paid for with a council grant is being built for me. Not essential for a long distance runner but essential for me.
Honestly I’m not bitter and twisted. I have pride. I try to park my MS outside the house in the disabled parking place allocated to me and The Wife by the council.
Three-Legged race
If you run long distances and raise money by sponsorship then I am delighted but please don’t play the MS card. You can not have an obvious progressive physical disability. If you want to know what life is like with MS then please run the race with a friend but be tied together at the leg and wrist for the whole race. My ties to MS are just as strong but they are 24/7.
Running Marathons is not possible unless they (Americans?) are being diagnosed much earlier than I was. In fact, being diagnosed before any physical signs of the disease show. In my case that would have been 20 years or so ago! I bought a chest of drawers last week and managed to take three of the drawers upstairs and had to leave the largest bit to my son and 11 year old granddaughter as my legs had stopped working. It takes me three days to recover after a round of golf in a buggie and it may soon be twice as long. I consider myself to be fortunate as my MS is developing quite slowly.
Rushing to the loo is a problem but not making it, a nightmare!
RL
Richard, you are spot on. Playing golf, impossible for me. I could not keep my balance using a putter and I would fall over using a driver so you are doing much better than me. I possibly have more energy, or at least I get less drained. Sounds like a round of golf gives you an MS Hangover.
Bladder problems, ghastly side of MS, don’t talk about them.
Patrick
Patrick, don’t you think they may have relapsing remitting MS, I do know one guy from Lancaster who has RRMS and he can be in a wheelchair one month, then walking as normal 6 months later, then regresses a few months again after that?
Johm, I have thought quite a lot about the blog since publishing it. Yes you are quite right but I think people in that situation are unusual worse after each relapse. So when he goes into remission the ability to walk will not be quite as good as before.
I think that people play on MS and running a marathon. I could call it emotional blackmail? If the person is on DMT such as Tysabri after receiving a diagnosis it is possible for all evidence of MS to go away. Strictly speaking they do have MS but they are not inconvenienced by it. So these people could run a marathon but the DMT has eliminated MS and in my opinion they should not say they have MS. People with MS that affects their walking, balance or energy levels cannot run a marathon. There is a difference and too many people blurr the edges to their own advantage
Patrick