When I was told that I had probable ms my neuro said to not think about it, go live. I’ve tried but each day I wake up and feel or not feel my legs, pain in my hands and arms and by lunchtime the fatigue is kicking in. I’m finding it hard to forget when my body keeps reminding me. Can you forget in time and just enjoy life? Lynn
i know what you mean, i think about it too much as well. My symptoms are not as pronounced as yours but i do have constant dizziness/ coordination problems.
Its so hard when theyre there all the time, and i dont know about you, but theres not an hour in the day that i dont think about it.
This problem is worsened though when you have nothin to do (jst got paid off)
I know its a bit of a clichy, but i think the best thing to do is keep busy. Get yourself a routine that you can stick to.
Get up early, build towards something, excercise when you can and eat right.
Hi Lynn, Sorry to sound a bit negative, but no, I can never forget I’ve got it - even though I’m not badly affected, in comparison with some here. Occasionally, I forget for a few seconds, on first waking up, but then it registers that something is hurting - or rather, lots of places are. I feel as if I’ve run a marathon, and then been straight on to a very wild party. Or perhaps, still half asleep, I might stupidly and instinctively stretch, forgetting that sets off a very bad cramp. In a split second, I’ll be wide awake, and remembering all about MS. So no, I don’t think it’s realistic to forget something that’s ever present, and in such an urgent and pressing way. I’ve not “forgotten”, in 2.5 years. At first, I hoped it might be like a bereavement, that eventually, one morning you wake up, and it’s NOT the first thing you think of. But I don’t think that’s possible, unless you’re lucky enough not to have any pain. I definitely DON’T mean you can’t still have a life! But you’d have to be thick to forget such an ever-present part of your life. Sorry, but that’s what I think. You can learn to live with it, and to work around it, but not to forget you’re ill. Tina
Hi Lynn,when I’m asleep and dreaming I can still walk,there’s no pain and the weirdness abounds.When I’m awake(megalol) the real world is painful and boring, but that’s the way the mop flops. Ho hum pigs bum.
I generally have quite a boring way of life, can’t work due to MS, in a wheelchair, single etc etc. When at home, I have plenty of time to worry about my many symptons.
I recently agreed to go on a stag-do involving a 10hr flight, had 4 amazing days away and hardly thought about my symptons. Got some great friends who obviously helped me a fair bit but came home thinking that I can do more than I thought. Not sure how this can be of any use to anyone else but realised that getting out of your comfort zone can be a good thing.
My friends did not pussyfoot around me, of course they were there if I needed them but it has given me so much more confidence.
Of course most of us can not afford holidays and am lucky to have some generous friends. It was in the US and it was nice to be treated “normally”.
Now I am back to reality with bowels and bladder misbehaving I feel like I am back to square one but realise you can get away from MS, if only for a few days.
Fingers crossed we can all find something similar.
Schoey23 , sounds like you’ve got some fantastic friends. Somehow I seem to keep having to explain to my friends that I haven’t got the energy I used to have. My husband says he’s tired of my ms. Not as much as I am! My daughter said maybe if I lost my memory I’d forget. Actually my daughter is the best and pulls me through , so I’ll let her off with that comment.
I don’t think I’ve ever (in over 17 years) forgotten that I’ve got MS but I don’t rail against it. It just is.
In other words I’ve learnt to live with it. Although I am acutely aware that I am not as badly affected as some.
I sometimes wonder about my approach though – perhaps I’m too passive. I had a neuro appointment last week and I sat in my wheelchair in the waiting room watching people struggle in on crutches and with walking sticks. I sat thinking that my walking was better than some but I preferred to glide along in my wheelchair getting from A to B by myself, at a reasonable speed and not looking like I’d just run 10 marathons. I’m not criticizing the walkers – far from it, but for me the acceptance of disability and finding ways to keep myself independent is the only way forward.
I don’t forget about the MS but I do enjoy life and I haven’t spent 17 years wallowing. But these neuros – bless em they do come out with some nonsense. – “try not to think about it” HA!
Occasionally I can forget about my MS, but just for a short time, usually I’m engrossed in something. For me, I never get use to that general feeling of how I feel in my body. For years it was normal I guess, then I started to feel at sorts with my body, as I put it, the interface changed with me and my body. This probably due to the ongoing symptoms, fatigue, stiffness, giddiness, feeling way to hot at times, wobbly legs and the anxiety generated by these symptoms as they vary in intensity. Its hard act to balance, I’m still learning, coming to terms with it.
I’d love to forget about it but unfortunatley it lives with me every single day & more so in the last 3 years Sue x
I can have lots of moments in the day when I forget about it - not because I don’t feel things like numbness, but I’m just used to it now. And if I’m doing something like watching a film or being out with friends, then those activities can distract me. As a general rule though, I’ve not forgotten about it. However, I’ve gone through a grieving process in the ten years since I was diagnosed, and have come to accept it more. And as a result I think I am more able to live life, as your neuro says, and to make positive choices about what to do with my life. So while I think we may never forget, I think there is hope that you can move on with your life.
I am lucky I have got a job so it keeps me busy and unless my legs play up MS has to take a back seat. Try to do something a bit different from time to time with the family and set yourself some goals to impress them. Easy for me to say but I promise it does help. Keep smiling, even when it is difficult x
Think the answer is no, but agree with Tina that when I first wake up or am dreaming I’m walking normally with no MS.
As soon as I struggle downstairs and get out my tablet box reality kicks in.
Keeping busy helps forget and I’m very good at coffee and chatting which makes me forget!
Can’t say l go around thinking about it all day. l struggle to get things done and l am in a lot of pain - but certainly not thinking ms - and l have had it 31yrs. l would have gone nuts if l had it on my mind all the time. Too much to do -looking after horses/dog/cats/ducks/chickens and my elderly mum.
Washing machine has finished its cycle - so theres the washing to hang on the line [sunny - windy day] Dishwasher needs emptying. Next lot of washing to go in. One lot finishing off in the tumble-dryer - now the ironing.
‘A womans work is never done’ - but l shall do my best to get as much as l can done.
Thanks for the replies. Ms seems to consume every thought and every moment. But I hope its made me a more considerate person as I’ve learnt that not all disabilities are visible ( but I’ve lost patience with those who think I’m stupid because I’m slower at walking and take more time sorting change when I’m shopping and the many other things that ms brings with it) time to find some distractions, I loved being outdoors. Walking , riding, played the violin, liked reading but ms has interfered with all of these affecting my balance, blurry vision, stiff painful hands and legs that forget what to do when I come to a step or a crack in the pavement! Any suggestions what you’ve found you can do and enjoy. (Please not house work) lol Lynn
I’ve only known I have MS about 4 months and I tend not to think about it too much. When symptoms flare up it’s kind of hard to forget about it but there are days where I barely think about it. And other days where I think about nothing else.
I work full time and I have a pre-teen daughter so I’ve plenty to keep my mind occupied.
If I do think about MS it’s only to worry about things like “what will I do if I can’t work” or “will I ever meet someone who accepts me” and “should I have more kids if I do?”
It’s tough because at 30, none of my friends are worrying about their health or their future in the same way that I am so it can be quite isolating. And I get frustrated when I try to voice my concerns and people (well intentioned) tell me I’ll be fine etc.
I don’t know, I suppose it’s just becoming more and more a part of who I am. Acceptance I guess.
The last time I went to a football match was the opening day of the 2002/2003 season. I was sitting in the front row at pitch level. We scored first and the scorer did the usual approach to the crowd. The crowd’s reaction was to surge to the front-as was mine. I didn’t make the yard and a half but I was still smiling when some kind people picked me up out of the stampede. Apart from the fact that we scored I was delighted to have forgotten about my condition for an instant. The kness healed soon afterwards as well.
Best wishes, Steve.
Hi, no…me neither, except in my case it isnt MS, but ISP…but whatever the initials are, the effect is the chuffin
same...............if Im in bed and want to turn over, I am reminded, if I am sitting at the dining table,(home or out) I cant get near enough the table and spill stuff, if I am at the cinema, I have to sit in front of the screen and crane my neck, if I am out in the van, I sit at the back and cant join in any conversations, if i…oh you already know the rest, eh?
Lynn the only time I can really forget about having MS is for the week or 2 when I go on a nice warm sunshine holiday the first year or 2 since I was diagnosed I found it really hard to forget about it well not forget about it but stop feeling sorry for myself and blaming MS for everything and letting it hold me back.
I was in a wheelchair and really only had the use of my left side I got down and if someone and of giving me a way to end it all I would have took it but 1 day I might a little boy about 4 or 5 In hospital he hadn’t very long to live and couldn’t even get home there where so many wires and tubes attacted to him but he was laughting and smiling that little boy was so brave he changed my life I pulled myself together and fought MS every step of the way I know I was so lucky to get the chance to try Tysabri and with that and physio a lot of hard work and living and enjoying each day I learnd to walk again I go to the gym now and try my best to stay strong I never take anything for granted I may have MS but it doesn’t have me just yet Lol
Yes I do sometimes forget about the MS. I work 30 hours pw and that keeps me busy so MS has to take a back seat. That doesn’t mean I don’t ache or have problems with my hands at the time but they aren’t at the forefront of my mind as I have to concentrate at work.
Also if I’m enjoying a day/night out with friends then I give them my full attention and again the MS is forgotten even if it’s just for 5 minutes. Then there are the very rare days where my only symptoms are the pins and needles which I have become so used to they are now the ‘new normal’ so again I can ignore them.
My advice would be to try and find an activity you really enjoy that you can still do despite the problems you are having at the moment. Perhaps invite some close friends round for coffee, even if they have to make it while you sit and watch? The hardest thing can be to ask for help but I have found that friends want to help but just don’t know how. Why not tell them that you want to enjoy normal stuff again but find it really difficult without a bit of support? Or have a pampering session with a close friend to boost your confidence? It could be a DIY beauty treat to keep costs down or go to a parlour if you fancy a real treat. Anything to help give you a boost and take your mind off the MS for just a little while. For me a girlie gossip always does the trick and it also then helps to unload all your thoughts and feelings onto your friends so they know why you haven’t been out so much and not quite yourself.
"Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."
I skipped the first word of this quote because I am atheist, however I believe they are powerful words when taken into consideration.
We can’t stop having MS by thinking about it, the illness has taken so much from us already, perhaps we shouldn’t help take the rest away by devoting our thoughts to it too.
Being aware you have it isn’t the same as thinking about having it.