Finding a happy balance

Hi everyone I’m really struggling just now I can’t seem to find the balance I took it into my head in January ms isn’t going to beat me as I haven’t really done much since June. I’m finding that if I keep busy the stiffness isn’t so bad and I don’t feel so tired but I’m fatiguing my muscles. Had ot in today she said I looked exhausted which I feel I’ve also been really sore today my very bones hurt. But if I stop I seem to seize more. I just don’t know what to do. My family don’t really get just how hard life is as I’m only early 30s and lots of people have ms and are managing better than you. If I’m tired and feeling down I get told I’m letting it beat me. So I’ve been pushing and pushing but I keep relapsing. I just don’t know what to do. Sorry for the winge. I am very lucky I see my neuro regularly gave access to ms nurse, physio, ot. They all keep telling me I’m doing g great but people close think there’s no benefit to all these appointments and I have responsibilities and what they say is ok in theory but you just have to go. I’m a strong person but my body has just about had it. My neuro thinks I should be resting as much as possible but I don’t know it’s not practical my brain is willing to go on but my body had different ideas. There’s still chores to be done kids to see to. For me I get a massage once a week and the rest is doctors appointments and general living. any nights out I have by the time I get round to going I can’t go as ms is playing up to much.

Hi anon

Firstly, regarding your apology for the winge: don’t be daft! You’ve got nothing to apologise for - it’s a cr*p situation, and we all know how tough life with MS can be. And I know generally we Brits think we should always keep a stiff upper lip & carry on, but I don’t think that’s always the best way to live. Bottling things up without admitting our problems isn’t a great long-term solution.

On your family, I’m sorry they’re not being supportive and putting so much pressure on you. To be honest, I wonder if there’s a bit of denial & fear on their part. Maybe they’re scared of what’s happening to you, and how it makes them feel, and so want you to carry on like everything’s normal. But it isn’t. Life has changed, and you need to start taking care of yourself. Your body & well-being come before their expectations. Getting them to realise that though will be tricky, and sadly I don’t know how best to help with that.

I think it’s important that you find ways to bring yourself life. Something I did for a while was to keep a journal where every day I’d review the previous day & ask myself what were the things that brought me life, that energised me & felt like they were really good for my soul somehow. Then I’d look for the things that had the opposite effect, things I did that drained me, made me feel rubbish about myself etc. Over time, I noticed there’d be the same sorts of things that that would come up in answer to each question.For example, I noticed that just watching telly all evening would leave me feeling empty & a bit frustrated. But anything that involved contact with nature, or doing some journalling, always felt very good for me. So I can use this knowledge to make better choices. If I’m not sure what to do for the evening, I know I’d probably be better off journalling or watching the birds out of the window for a bit, than simply finding something rubbish on the telly to watch.

I hope some of that helps, and someone else can give some good advice about your family.

Take care


Hi dan I shouldn’t really moan about my family in terms of practical help they are being great but in terms of getting how bad I am then they’re not. I love nature it’s just frustrates me knowing I can’t go for an distance of walk but I’ve the neurologist soon so I’m going a walk today to see how far I can get. But with dogs that are idiots it won’t be relaxing lol. I was getting it’s a shame for my dog I can’t walk far. Yeah thanks. I don’t normally watch telly but the fast few days I’ve been watching true story movies on tv so I need to use the chair when I put my feet up and just relax. Abduction by sexy guys would be good lol though don’t think that will happen.

Hi the advice is all good, I wouldn’t mind getting a scooter however my family would see this as giving in. So I suggested we go for a walk to demonstrate now it’s ended up I’ve to take the buggy a short walk but she’s going to go further so no demonstration grrr, oh well,

I think you need to sit down with your family and explain that you’re not giving in but you do need to take it easy. Overdoing things will just bring on the relapses and in turn cause more damage and more permanent disability. This is a life changing condition, try and help them understand you are not able to carry on as you used to, that some days will be better than others and that you will need their help and support especially on the bad days. Hope this helps x

Hi Anon, I can empathise with the situation! When I was SO fatigued I thought my life was effectively over (the worst of the fatigue lifted after 6 months, although there’s a little bit of me is so very scared that the the crushing fatigue could start again at any time) I worked very, very hard to try and NOT show those around me that I was struggling. After all, I looked fine, so how bad could it be? There’s no history of MS anywhere in my family that anybody knows of, nor does there seem to be any friends/acquaintances with it either, so they don’t have any frame of reference. For all that I would strive to keep going regardless (again, nobody knew how hard it was, so no-one was remotely impressed with my efforts), it was exhausting to do so, and I’d get a bit annoyed with everyone’s lack of sympathy/support, but I was the one determined not to cause anyone to feel sorry me! One expression I used one time to try and explain what happens in MS was ‘brain damage’. Essentially that’s what MS plaques in the CNS are. Just from throwing that in to conversations a few times gave people pause for thought I think. I try and educate myself as much as possible with what’s going on in my body so I can explain to them how and why it’s difficult. The unpredictability can be the most frustrating thing! I’ve found a bit of strength in knowledge and understanding though. Good luck!

hi anon

multiple sclerosis means many scars

the lesions are scars on our brains.

so give them a lesson in ms with a bit of latin thrown in “sclers = scars”

stop apologising we all get it on here.

learn to pace yourself

carole x