I have had MS for 25 years now and I find it totally soul-destroying. I have been in a wheelchair for most of that time because balance has been severely affected and I feel totally useless. It is SPMS and I know I am not the worst case but I want to know how people cope - because I certainly don’t.
Hi Lorisan I’m really sorry I really wouldn’t be the the best person to help with this but don’t despair there are plenty of amazing people on here that will be able to. Really didn’t want your post to go unanswered for too long as it’s really important you know we’re listening!. Hopefully someone will be able to help with your feeling useless and like you’re not coping soon. This is a horrible and cruel disease so don’t beat yourself up for how you’re feeling and try to be kind to yourself where you can. I’m sending you much love and a wish that you find purpose and ‘happy’ soon Xx
bless you lorisan
i’m unable to offer any advice but want to add my love and good wishes.
Firstly let me say I’ve had MS for 26 years, to give you some context. Sounds like you are feeling down. We cope because we have to. I’m lucky I suppose, I had/have supportive family & friends. Focus of what you CAN do now, rather than what you feel you have lost. I’ve only been using a chair for the last 6 years, but whaen I got it, I could go further and faster than I had in TEN YEARS.!!!
After I was diagnosed, I got a degree as a mature student, continued to bring up 2 kids and do voluntary work. I was not superwoman. It was knackering, exhausting at times. And I wasn’t in a chair at that time. Noooo the awesome ppl for me are the ones doing zumba and running. Never gonna happen here!
So I can’t do the garden anymore, or my hobby of jewellery making. i have to find something I CAN do. Its headology a lot of the time. The body may be a wreck, but the mind has to be strong. And if you ain’t feeling thst - maybe you need counselling? or just someone to talk to? Do you have contact with the local MS Society?
I agree. MS is crap. It’s horrible being very disabled. I’m 22 years in (nearly exactly 22 years sine my finger went numb - first symptom!) and I hate it.
I use a wheelchair at least 95% of the time. I can do a very small amount of walking using FES or another foot-drop aid and a walker. I can manage about 3 metres or so, sit down, hope I don’t need the loo in a hurry, put my feet up on the walker seat to stretch my legs, and then about an hour later stumble 3 metres back to the wheelchair.
I’ve been using the wheelchair most of the time for 7 years now, since a terrible relapse took my walking ability within 3 days and put me in hospital then rehab unit for 2 months.
My bowels and bladder are useless. I have had a colostomy and use ISC to empty my bladder. I can’t use my hands so well now, can’t handwrite and eat like a chimp. I can’t cook (my passion), but I can still devise, amend and write recipes and have taught my husband to cook.
But we carry on because we have to. What’s the alternative? If we’re lucky (and I know I am), we are cared for by a partner or by good professional carers. Or we manage to just about get by on our own. If we are extremely lucky, we have good friends and/or family to keep us reasonably positive.
We also have each other on this forum. We, with MS (or those in limbo) are a sort of family. We understand each other because we’ve been there. We help each other with support, with answers to questions, or just to make each other laugh.
We know it could be worse (for most of us), and thankfully I’m not at the point of complete helplessness. Yes, I’m fairly useless physically, and yes, I have some cognitive deficits, but I can still use my brain to compensate for what I’ve not got physically.
I wont say MS is anything but bad bloody luck. MS is horrible. And I hate it. I won’t say we need to keep a positive mood, sometimes we all need a bit of ‘why me’, and ‘it’s not sodding fair’!
But we carry on, we cope, in spite of MS.
I wish you the best of luck, and some fun times in your future despite your disability.
Like you I have been diagnosed a long time ago 35 years, it seems the older we get the tasks of daily living becomes more of a challenge, but rather than loosing heart accept the small achievements with pride and never give in. At times it seems a unsurmountable challenge but know your not alone.
I’ve had MS for 16 years, in a wheelchair for almost all that time. It’s been a heck of a journey, many awful lows, but also some highs (learning to fly thanks to Flying Scholarships for Disabled People 4 years ago was amazing). Something that really helps me is becoming more aware of those little moments of beauty, joy and pleasure, which I would have not noticed if I hadn’t got ill. Gazing at the clouds, watching birds fly, noticing the beauty of running water, the simple joy of a nice cup of tea. I really need to find the beauty around me! I know my biggest help, and hope, is God. I’ve come so close to losing faith because of all this, but now it’s stronger than it’s ever been. Honestly, I don’t know how I’d cope without him
I am sorry that you are feeling so bad, many of us here totally “get” how you are feeling. MS (and many other conditions) is a complete scumbag and totally unfair. It is completely reasonable to be massively pi$$ed off.
That said we are where we are and there is not much we can do about it. However after 28 years I have learned that there are still some good bits to be enjoyed. I have had to reset my thresholds but there are small victories to be had / enjoyed / celebrated, if you can find these it should help and if you can share them, either here or with friends & family you will feel a bit less crap, which is always a good thing.
I wish you all the very best.
Thanks Sue. A lot of the time I feel alone with my MS but thanks to this forum I realise there are many others just like me. I am very lucky in a lot of ways, mainly because of my lovely supportive husband. So we all have to keep our chins up and hope for a cure!!!
Thank you. Your support is much appreciated.
Thanks for your kind and wise words Mick.