I turned forty last year and got symptoms from hell.I take pregabalin and the new me , well there’s more of me is going to weightwatchers to see if i can get this weight off.My energy levels are rubbish, so where as i used to walk miles,(no car). i now limp to work and back.Does anyone else get the feeling that pavements have a steep slope to them? i’ve walked these pavements for years but thats how it feels now.One foot will not behave and walk properly and then that inturn makes it very painful.I tried to go back to my violin lesson last week.i’ve been playing for 8 years, my hands are very stiff and arms too so i dont know if i should persevere or just accept that that is one thing i can’t do.I’m slowly learning that you can’t fight ms, just live with it, but i’m still learning .
Most people can relate to how you’re feeling right now - I know I can.
For me it’s case of learning to pace myself which sounds easy enough to do, but it’s not. It’s so much harder to implement. I take each day as it comes and try not to overdo it - but I nearly always do I’ve become quite good at prioritising my day at work but at the moment I feel that’s all there is…work! I’m so darn knackered for anything else!
Like you I used to be able to walk miles for the last few years have put paid to that. I try to concentrate on what I can do now, rather than what I can’t but it’s definitely a steep learning curve.
Take each day as it comes…
It is so hard. I feel for you with the violin thing - I was learning to play the piano when I was first dx and one of the first bits of me to stop working properly was my hands. I was only a few years in (piano) and was absolutely terrible, BTW. Mid relapse, playing was simply impossible because my fingers would not work, and I gave up there and then. I have not touched the piano since. I should have stuck at it. My hands never recovered completely, and have got worse since, but TBH my playing was so terrible that the disability I now have would have been the least of my musical worries. I can’t write any more, but I can type, and I would still be able to play, after a fashion. So giving up in anger and despair was a mistake for me. Whatever you decide to do about the violin, please do not do it for the wrong reasons, the way I did!
I’m not diagnosed but do understand what you mean. I use to run five miles quiet esaily and loved dance. I was fairly fit. Now if I’m having a bad day I struggle to walk up the escalators that I use to power up - my legs feel so stiff and tight and I get a burning ache. I had to give up argentine tango as by the end of the class I had to pull myself up the stairs my legs felt so wobbly and hurt.
It’s been hard - though my symptoms are mild I’m only 29 and have been in generally good health til now. Not being able to do what I enjoyed has been difficult to accept but I know trying to run or perceviere with an activity that I’m really struggling with won’t help. I’ve instead tried to pick things I can do so by all means I’m not giving up. I do yoga twice a week which helps with the stiffness and belly dance which I can just manage if I’m having a good week. I can work still which I’m really grateful for though on a bad week I’m hanging on for the weekend to come and will just hiberante when I get home. I still write which is a big passion of mine. So I’m trying to remain greatful for the things I can do. It’s difficult and every once in a while it does all get too much.
I posted about this recently, I have gone from walking at least 10 miles a day and now struggle to get to the end of the road. I’m not diagnosed either. Have you tried access to work for help getting to work. I’ve used them and they are great, it’s worth a try. Hope things improve for you soon Xx