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Family think I need to do more

I am 2 months into relapse. I rest in bed when I feel rubbish, which is a lot. Some family think I should be doing more. So question is., should I push it when I feel shit ?

I was always told not to push it by my Ms nurse. As it would just make me worse if I did.

Have you tried steroids ? To speed up your recovery.

Take as much rest as you need.

My partner has MS - originally I thought she should be doing more but that was from my “non-MS” perspective. Very often people who do not have MS do not understand the fatigue and tiredness. I think they relate it to their own type of tiredness. My partner rests if she is tired and she paces herself - she does this from experience. She used to try and do “more” but found that this was counterproductive and that she would be even worse the next day.

I would try and explain to other people without MS that tiredness and fatigue is different for you. From what I have seen over the years it is all personal and everyone is different. You could try doing more and see what happens - but be careful if you try this … just take it very steady, it might simply mean doing some exercises whilst in bed and see how this makes you feel the next day.

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When one’s clients are not getting their usual standard of service, they can get impatient. This applies to clients of all sorts - employers, close family, friends, neighbours, the lot.

Try to explain if you have the energy, but don’t expect much success. Otherwise, it’s a matter of growing a thick skin and an ability to think, 'Sod ‘em,’ even if you don’t actually say it.

Alison

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Thank you all. I feel reassured that I’m not just swinging the lead. It’s early days and a difficult balance to find.

I’d rather like to send this ms thing back where it came from. I am bored of it now !

Janet x

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I vote for ignoring people who ‘think you should do more’. Only you know how fatigued you feel and only time will teach you how best to manage it.

If you think of energy as being like a bank balance, you use the ‘funds’ you have but if you run out and go overdrawn, you’ll have to pay it back. So, if you ‘push it’ and do more than you have the energy for then you’ll have to rest more to recover what you’ve overspent. And we who suffer from fatigue have less energy in the bank, so have to eke out what we have and rest more to allow for recovery.

You could try to explain this (or in whatever way makes sense to you) but otherwise, go with Alison’s suggestion, sod em!

Sue

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MY MS Is progressive but like you, tiredness fatigue are one of my main no point In going out any where If you are falling

asleep, but unfortunately people call you a recluse, Its about this time of the afternoon that It starts to effect me,I used to find

alcohol worked but doesn’t seem to any more, just makes It worse

David

I have learned to pace myself…but on Saturday I decided to do some hand washing and hang it out…result…

bypassed my catheter…wet nix, leggings and slippers…due to squashing my tum too long…we know when we need to rest or not do summat particular…oh but innit chuffin annoying? and if those who cant see or understand whats staring em in the face, then chuff em!

pollx

As others have already advised, my ms nurse always told me to rest rest and then rest some more, whilst going through a relapse. It’s all very well for family to say this but they do not really understand, it might be worth giving your ms nurse a call (if you have one), I’m sure they would say the same.

I worked through a particularly bad one (didn’t know I’d got ms) and it’s left me with lots of side effects including pain.

There will be time for exercising later.

Take care, love Wendy x

I fear this advice falls into the “pull yourself together” category. It is hard for people to watch someone with MS and well meaning friends and family want to help. They hope that a bit of backbone, a bit more effort will restore normality. This advice may be all well and good if you are dealing with someone with mental health issues but MS fatigue is not a state of mind, it’s a very real physical condition. If wishing it better were possible this forum probably wouldn’t exist. The amount of activity possible varies greatly from person to person but I have never found pushing through to be a good way of dealing with things. There are times when circumstances force me to do more than I know I should (just emptied 2 chest of drawers because the charity shop is coming to pick them up tomorrow) but I will spend the rest of today feeling like cr*p and I’ll probably be in bed after tea.

I often think that you need a bit of a rhino skin to insist on what you need in the face of well meaning advice. The fatigue booklet on this site is very good (and not just because I’m quoted in it!!) if you could get your family to read it they might have a better understanding.

Jane

I am inclined to push myself. I indulge the notion that MS is largely a failure of perception; ie. you might feel knackered, but in reality, you , your muscles are full of energy and raring to go! and so go!

but with that being said, burn out is a very real thing for all people, even healthy buggers. you should try your best to battle through all events and challenges. But you have to respect the fact that the efforts made, must be followed by a proportional level of recovery.

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Hi Janet, seems to me some of your family are either very uncaring or in denial. Some people can’t cope with illness, so they unsympathetically justify it by telling you basically to “pull yourself together”. You know how bad you feel, why should you pander to their dismissals by pushing yourself? It’s you that will suffer, not them. What will they say when you may get worse? My advice is get some damn good books or MS society leaflets for them to read, if they care they will look at them & hopefully gain an insight into your world, you take your time, get better at your own pace. We all know how unforgiving this illness is, don’t over do it & make sure they understand what your up against, damn sure they wouldn’t question your abilities if they realise the differculties you are coping with, good luck Tracey x

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Well said Tracey,people in general have no idea at all,i just say to them,try living my life and i encourage them to read certain posts on here in the hope they will understand a little more,but it seems its a case of introducing your head to a wall in an abusive manner.

Look after yourself if possible (best option)

Mel x

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Ha ha been half asleep all day, but here I am wide awake at 4 in the morning, I have often wondered If the answer Is to go to bed for 4 hours get up for 4 hours through out the day, I wonder has any one tried this, was It beneficial ? with MS you are better off living on your own, get up when you want go to bed when you want, chill

David x

I considered doing this a while back. It was my exact thought, sleep and wake for 4 hour shifts. I don’t think it would fit in with the OH though so I never tried it!!

I find the longer i stay in bed the harder it is to get up. I get up everyday early, and do what chores i can. I have my recliner chair and my bottom is usually reclining by 11am whilst i have my coffee and little cake. I then rest until lunch time. I am wiped by 2.30pm.

I NEVER sleep in the day ever. I just do what i can, even take my dog out on my scooter in the morning mostly early.

I have tried to stay in bed all day, and found my legs got so stiff i could hardly walk.

It works for me as I rest, work, rest, then by 6pm i am in bed…and asleep by 8pm.

I only push myself IF I WANT to push myself.

We all work differently on coping with this disease, what might work for one person might not for another.

Tell you family to tie some weights around the bottom of their legs and then walk a mile…they might understand then just how fatigued you feel and how bad your legs are.

There was another discussion going on today as regards sleep,I also recommend here you google Opera hospital

profiling beds, since I have had mine, I have slept very well, you are right Sssue,what’s an OH by the way.

even though like me you are home all day, there always seems to be something going on, the lady who very kindly

does my washing Is coming to collect the washing today got to get up, get dressed, Wiltshire food’s ( recommended)

are coming got to get up, get dressed, Tesco are delivering, got to get up,Its the cleaners day, better not lay In bed,

Well Its 3pm time to go and sit In the bed room, In my riser recliner, whilst I still have the energy to get there lol

Regards David

David - we get ready meals for my mum. She loves curries - so l have been getting from Tesco - Chicken Tikka Masala-Pilau Rice-Bombay potatoes all in one carton- and they are half price at the moment. And they are fantastic. Mums 92 - enjoys her curries. l have bought some for myself now.

Without consciously planning to, I suppose this is more-or-less what I’m doing. I’m often still up well past midnight, and wake again at four or five o’clock in the morning (due to pain, or needing the loo, or both). However, I don’t usually get up 'til eight or even nine. This morning I was still in a dressing gown when my mum called at ten-to-eleven - although that doesn’t imply I’d only just got up.

I have such a lengthy procedure with coffee and tablets and baths in the mornings, before I feel almost normal, that it’s not uncommon still not to be properly ready two hours after getting up.

Then I potter about, do a few things - invariably less than I’d planned. I have lunch at one, then retire for a lie down at 2.15 - in theory to listen to the afternoon play. But more often than not drop off before the end of that, and don’t get to find out what happened.

Typically wake again about 5 p.m. - I notice when I wake up is mostly linked to Baclofen wearing off. The 5 p.m. wake-up is because things have begun to hurt, and not because I wouldn’t like to sleep longer.

So then I have to go downstairs and dose up with pills. Sometimes I go back to bed for a while and listen to the six o’clock news, and the sometimes good, sometimes dire comedy show that follows (tonight’s was dire - you can always bet that “showcasing new talent” means it will be lame acts that were cheap to hire because they don’t have any other bookings), then The Archers, then get up again to have (usually) a quick and easy meal - microwave dinner, or (like tonight) something on toast.

After that, if there’s something on TV late I want to watch, I might go back to bed for yet another hour, before it starts.

So really, yes, I’m doing shifts all day - mostly dictated by how long the medication lasts, and basic needs like food and loo. I only get away with living like this because I’m on my own.

I can skip the afternoon nap, if I’m doing something special that day, but I do miss it, and tend to be extra tired and grumpy the next day.

Tina

x

Hi David

An OH is an other half. In my case my long suffering husband Tony. He manages to keep going all day long with just the occasional snooze whilst the cricket, or cycling, or other sport is on TV whilst I retire to the bedroom for a proper rest/sleep.

Sue