i was diagnosed about 8 years ago with RRMS. for 6 of those 8 years I worked as ground crew on the railway and was often (4-5 days a week) working for 6 hours+, hard physical labour, walking for up to 3-4 miles on ballast (imagine walking on a stony beach). During those 6 years, apart from balance I really didn’t notice too much of a deterioration in my symptoms.
Then about 2 years ago I lost my job and so stopped the constant exercise, 6 months after finishing that work and sitting around on my backside, I was a Christmas temp at the post office as a sorter and really struggled with standing for 10 hours a day in one spot.
Now I work in an office and spend all day sat down staring at a screen, where my daily exercise consist of walking from my front door to my car and back again. And walking for any length of time (200-500 yards) is really hard. A walk of half a mile will make me incapable of other exercise for at least 24 hours and even then it will be a struggle.
So, I guess my question is, do you think it’s possible to get back to or close to where I was on the railway?
I hope I made myself clear and if I didn’t, ask me any questions. (I spent 6 years hiding it, now I’m very open about it. That in itself has been an incredible stress reliever and weight off of my mind).
First of all, much sympathy - for the MS and the job problems.
I think you are absolutely right that some, possibly most, of the deterioration you have seen has happened because of the drastic reduction in the amount of exercise that you are taking. If you could (gradually) start to do exercise again, you will almost certainly see an improvement in your strength and stamina. There is plenty of information published on MS that shows this. My own experience is of using a cross-trainer, something like five times a week. I have worked up from doing something like 6 minutes a day on it to doing 24 minutes a day.
Some of the deterioration you hve seen will almost certainly have come from the MS itself. If you want to stop this deterioration, or possibly reverse it, my advice would be to try and access one of the treatments that the doctors think may cure MS. These are Lemtrada, Cladribine and HSCT. You are most likely to be offered Lemtrada and if you take this you have a could chance of the progression of your disease stopping for good.
To really answer your question. It is unlikely you will ever again be as fit as you were two years ago. However, you could be in a much better place than you are now, if you are prepared to work at it and if you can get the right treatment.
Hi sewing, Its the increments that I struggle with. Because a few months ago I started exercising but as soon as I was comfortable with work I was doing, I would increase it. And that time it was too much too soon, coincided with a cold, I over did the bike and I didn’t exercise again. How did you increase your training?
I went on the cross-trainer for six minutes most days for a week or two, until I didn’t feel exhausted when I finished. Then I started going on for nine minutes, about five days a week for a few weeks, again until I didn’t feel too bad at the end of it. Then I upped my time to twelve minutes, and so on and so on, until (after months) I was doing twenty one minutes at a time. Well, twenty really, because twenty is a nice round number. I’ve stuck at twenty for some time but I’m now increasing again in the hopes of getting to doing thirty minutes of exercise a day.
It’s a boring story, but I’d say with regular exercise, you just have to do it. Don’t think about it too much, don’t go too far out of your comfort zone but do it every day, or nearly every day. Don’t give up if you miss a day or a few days, just get back to doing it. Think to yourself, this is something that I can do that will definitely improve my physical condition and just do it.
I go dancing 3-4 times a week (ballroom, latin, belly, dancefit etc) each class lasting 90-150 minutes depending on which one - and I have started yoga last week. A few weeks ago because of holidays etc, I had no classes for 2 weeks and even though I went to the gym I found a big difference in my legs. They were stiff and sore and I was so glad to get my dancing shoes back on (well belly dancing is bare feet but you get my drift).
One class is called Burlex-fit and the first class I tried I managed 40 minutes and then had to sit down. On Friday I did a Burlex-athon to raise money with the rest of the class and I danced for 2.5 hours. But that has taken about 6 months to get up to that.
None of my classes are high-impact, I wouldn’t be able to do it if it was but they all help with my balance and co-ordination and with my fitness cause like you I have a desk job so I need to get my exercise somewhere.
You should be able to get a lot of your stamina back but it is just a case of starting somewhere. take yourself out for walks - find an exercise class or try dancing. There is something special about a man who can lead a waltz properly
Unfortunately there is no quick fix and you might never get everything back but you can try - just be realistic.