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When do I stop?

Hi everyone!

I have recently been diagnosed (October 2017) with my first episode In May 2017 followed by the second one in August. I have been experiencing tiredness and pains but don’t really know when to stop. I am currently working and don’t feel like making excuses all the time and usually push myself to the point I get home crying. This condition is so complex that I don’t know if it is ok for me just to be limping for example and hoping to get better or just taking my time home to get better and rest?

Hi

It’s time to stop when your body says so.

This is one of the worst invisible symptoms of MS. Fatigue. It’s not the same as tiredness. It’s an actual physical symptom. And there is no real cure. But rest helps. See https://www.mstrust.org.uk/a-z/fatigue

As does practicing ‘fatigue management’. This means essentially breaking tasks up into smaller chunks. And doing things bit by bit.

Does your employer / HR department know you have MS? Is there a way for you to change your work pattern at all?

What about at home? Do you have a partner who can help you to alter the ways you do things? Children to drain you of energy?

Basically it’s like you have a smaller fund of energy and when it’s run out, there’s no ‘pushing through’ to get more done. The only thing to do is to rest. Try to eat sensibly, not drink too much and get regular, good quality sleep. I know, it’s easier said than done.

Have a look at the MS Trust info on Fatigue and see what you might be able to change in your life to make things a bit easier.

Sue

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Hi Xtelle, If you have Relapsing Remit type of MS, please don’t do too much in ‘remission’ even though you may feel like you’re ok. Just like a car cannot move without enough energy (petol,gas, diesel, electric etc), then the more energy you use, the quicker your energy runs out and can only be restored with good quality sleep & healthy diet.

Sue is absolutely right her post above, giving great hints & tips.

Alas, there is nothing to stop the fatigue, but you can manage it. Double up on the usual time things take, i.e if it takes you an hour to change bed linen, allow yourself 2 hours. If you go out, remember the energy you’ll need to get there, energy to spend there, energy to return and allow enough time to rest. If you can’t actually rest, then allow even more time.

Never easy to do nothing, but worth it to store enough energy to enjoy doing something.

Chrissie x

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Thank you very much. Yes I have RRMS and my manager and HR know that I have MS. They are very understanding and I am grateful. I just don’t want them to feel that I am asking for too much :frowning:

My husband helps me a lot and I have changed my diet too but got a heavy cold recently. I am actually feeling bad to be off work again while I just came back this week but my body is not cooperating. Sometimes I feel like I’m wasting everyone’s time or complaining and I hate that feeling

Christelle

Hi Christelle

It’s such a shame when you feel like crap that you have to also feel guilty because you keep having to say, I feel terrible. But when that’s how you feel, sometimes you do just have to allow yourself the time to rest and recover.

Having a nasty cold can make all the MS symptoms feel worse. Especially fatigue. So in a way, this is your MS, but actually it’s been caused by your having had a cold.

Think about what happens when you get a cold, your immune system starts to fight the virus. Then think about MS, it happens because your immune system gets confused and starts attacking healthy bits of you (the myelin around your central nervous system). So having the cold gets your immune system all riled up and it’s bound to make you feel more crappy than just the ordinary cold symptoms. Even if you’re on a decent DMD, you can expect fatigue levels to be raised following a cold.

This is my (hopelessly unscientific) reasoning anyway.

I hope you get some decent rest, take life easy for a few more days and hopefully soon you’ll feel a bit more ‘alive’.

Sue

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Hi hunny how many other people have been off with this flu or cold thing doing the rounds, i bet your not the only one, so dont feel bad about it ok.

You could ask your HR if you could start later if it helps and finish earlier, i.e. cut back on a few hours.

They have to accommodate you.

I should think the getting to work is a chore never mind being there.

When i started to get sick and i was working as a tutor coordinator i was lucky i could do some work at home.

I wouldn’t give up work to be honest but just adjust your life style a bit once you stop working what would you do? You will be bored and just sit there thinking about your MS lol.

So try to adjust but dont feel guilty about being off sick, a huge amount of people are off sick at the moment. Oh and good for you for working. xxxxxxxxxxx

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Hopelessly unscientific Sue? Nah, it’s reasoning from those of us who have experience in this cruel disease. An easy to understand explanation is far better than jargon.

XTelle, feeling guilty for being off work does nothing to improve our health.

C.Chick is right, congrats to you for working when you’re got enough energy. Right now, it’s unrealistic to force your energy when it’s so run down. Your employees will understand, co-workers can be awkward, but sod 'em, they don’t have incurable MS.

Chrissie x

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Thank you very much for the support. I really appreciate it and hope I joined the forum earlier. I will try to rest this weekend and see how it goes on Monday

Christelle xxx

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Christelle,

MS and its various symptoms are awkward gits to get your head around. All of your judgements are based around the other 99% of your life’s experiences so this new and constantly changing set of circumstances requires new and rather different coping strategies. You do need to learn (as best you can) what your new thresholds are, try to stop physical or mental work before the effect of carrying on carries too big a price. I do not mean to sound glib and I still get it badly wrong sometimes but generally if I listen to my body and only push hard on occasion I can sort of cope. I am sure others here with their experience will try to help you find what works for you.

Mick

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Hi Christelle, I wanted to reply to this as I am pretty much in the same boat.

I was diagnosed in 2015 with relapsing-remitting. My symptoms are mainly spasticity, bad pain, fatigue (and some kind of weird, pressure feeling in my head which builds to lightheadedness) and weakness. My left side is mainly affected, but I am now getting pain in my right side. Also - this week in fact - my left thigh went dodgy which is affecting my walking. It’s been five days like this now.

I work full time and initially wanted to just muddle through and keep going. However, I wasn’t actually sure whether this was even the right thing to do as I read that some people either reduced their work hours or gave up work upon receiving a diagnosis of MS. I then began Avonex and suffered with the awful side effects two or three days after injecting, even 1.5 years after starting the drug (I switched to Tecfidera a month ago. It’s much better!) Even then I tried to go to work and experimented with the day I injected so that the side effects wouldn’t disrupt work. I read that some people took a day off work after the injection to recover, so again I wasn’t sure whether I was doing the right thing in pushing myself to lead as active a life as possible.

I was primarily motivated by money in that I have a mortgage to pay off and I have only been in my current job for 8 years so I haven’t built up much of a pension. I wanted to work full time for as long as I could to pay off more of my mortgage, plus build up more pension. I also think I am can ‘cope with anything’. However, I now see that quality of life also counts (more than money or putting on a brave face).

With my leg having gone weird this week, today - for first time - I have looked into my finances with a view to reducing my hours at work. Also, when I was first diagnosed I went into work each day. Now I work at home one day a week.

My employer has been very supportive. They referred me to Occupational Health who recommended some reasonable adjustments for my work to make, which they have done. I must say - in trying to push through, I have taken a lot of sick days over the past few years.

I am rambling - sorry! I think what I wanted to say is that at first, I thought that my symptoms were just the normal course of MS and I pushed through. But you also need to think about the quality of your life. It’s no good to go home in tears. Also, we need to make sure that we look after ourselves all round: exercise, eat healthily, keep happy, get adequate sunlight, build emotional support.

I am limping this week because of my dodgy left leg (I think my thigh has gone week. It twitches sometimes too) and I have no idea whether this is temporary and it will right itself soon, or whether it will stay in its current state and I will limp forever more or whether it will get worse and I will need a walking aid. Who knows? I do know that I would like to remain fit and thought that swimming might help? So if I reduced my work hours, then perhaps I could fit some swimming in.

Sorry if the above isn’t helpful… It’s just that your post chimed with me.

You’ll figure out what your MS is like for you. It’s different for everyone one. Whatever you reasons for pushing yourself (wanting to put a brave face on; keep life as it was ‘pre-MS’; wanting to challenge yourself to cope; wanting to keep on earning), these are all fine. But look after yourself too. Listen to your body. Seek help from Occupational Health, your employer, but if need to pull back a bit from work, do it.

Take it easy x

How are you coping? I feel I am not coping well…

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Your post started with ’ when do I stop’ !

I am not going to say much, other than I 100% understand the q

big big hugs

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Dear Christelle, don’t make rushed decisions. HR look after the workplace not you, Occ Health support both you and the workplace, could you join a union who would support you. MS = disability, so you do not have to count all absence as sickness. Also, your work place should make adjustments. Access to Work can also help. Do you have a pension?

Most importantly look after yourself (I could sleep all day and night if I allowed). Your GP should be able to sign you off for a while and you should receive some level of pay whilst you decide what is best.

take care Ali

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My manager is very helpful and always tells me that I should come and see him if I am not well. But I am struggling to go forward and say it or ask for help/days off. Sometimes I want to reduce my working hours but then some weeks I am fine. I have mixed feelings as I don’t want symptoms to get worse if i am pushing to hard and at the same time i feel like I might have MS but I still want to have a normal life :frowning:

Hi Christelle

You were diagnosed in October of last year, with your first relapse in May, so this is all very new to you.

Perhaps you experienced symptoms in the past, which you may have put down to other things. However, from now on, perhaps keep a log of your symptoms. You may find a pattern. For example, I heat up a bit when I am on my period and this can make my stiffness/fatigue worse. I also get hot at night which means that some of my MS symptoms worsen and I can’t sleep. If this happens to you, perhaps you could work from home for one or two days just before or during your period?

I know that I am at my best in the mornings and so I asked my manager if I could have my 1-2-1 meeting in the morning as it used to be at 3pm. I keep a hot bag (bag filled with beans) which I can heat in the microwave at work to put on my neck when my neck spasms come on. I’ve also brought an eye mask into work so that if I need a break from my PC and all the bright office lights, I can go and sit in our meeting room with my eye mask on and relax my head/mins for five minutes.

I was diagnosed in June 2015. I met my boyfriend in October of that year. We dated and spent weekends together, and we used to go out for lunch/brunch/dinner. I noticed that I used to feel awful on Mondays so I asked my line manager if I could work from home on Mondays.

I put my bad state on Mondays down to having done a lot of walking at weekends with my boyfriend and also eating out (therefore not eating as well as I could have done having prepared fresh, good food myself at home). My boyfriend and I now live together so we don’t have to travel across London to see each other, plus we don’t eat out as much. I don’t feel so wrecked on Mondays and learnt that I actually need to rest properly at weekends plus cafe/restaurant food can make me feel bad. I now know to eat healthier meals (lots of good Omega fats in oily fish, nuts and seeds as part of my breakfast, plenty of vegetables etc). So you’ll learn as you go along.

I can still feel pretty rough despite working from home a day a week and eating healthily etc, so I do still take sick leave at work. As others have mentioned, ask to see Occupational Health; think about the Access to Work scheme; think about home working; join a union. The idea about being signed off a while in order to think about what you want is a good one. Also, for some companies a reduction in work hours can be a permanent change in your contract therefore perhaps see how your MS is for you (keep a diary, note triggers if there are some, note any new symptoms) before you reduce your hours.

I worked from home yesterday and I’m back in the office today. This week, I am going to ask my manager for a meeting and request to work from home 2 days per week, instead of only one.

x

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