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Exhausted and scared

I love love love my job. I’ve worked soooo hard to get here and cannot bare the thought of having to give in now due to some awful stupid disease.

I’ve been back at work for a week now and am shockingly exhausted. I’ve hit my ‘wall’ today. I definitely have more energy than before Christmas when I had to take 4 weeks off for what classically fits a ‘relapse’ (even though it was my first major attack) and am scared that working through the tiredness will trigger another attack. But I’m equally scared that taking more time off will make my employers lose confidence in me. I teach Years 6-11 in a private girls school and they have been amazingly supportive. They do want me to stay there and have promised to support me because according to them apparently I’m fantastic!

So, my questions are: are there any drugs to help which don’t have side effects worse than the fatigue? Does pushing through the exhaustion barrier typically trigger a relapse or make you stronger? How do other people cope with the work/fatigue balance?

Thank you!

Deb

Good question Deb. I’m STILL waiting test results but would also like to know if it is MS…you’re post could have been written by me!

I have fallen asleep at my desk a couple of times over the last week…early afternoon I am exhuasted.

Hi Deb

I work full time too and my employers are also very supportive and like you I love my job. Also like you my work is very full on and busy. Some days I really struggle and I get worse in terms of tiredness and fatigue as the week goes on as do things like concentration etc etc.

There are meds to help with fatigue if you’re finding it particularly troublesome - I’m on modafinil, been on it for about 18 months now (I think!). It helps me enormously but doesn’t stop the fatigue altogether. My nurse - who I see regularly - would like to see me reduce my working hours, which at the moment is just not possible financially. However I do try to make adjustments as much as I can - which does help. At home and at work.

In my opinion - don’t push yourself. Learn what your limitations are and stop before you get tired, there may be some activities for example that make your symptoms worse or you may have to reduce the length of time that you do them for. It’s very much a learnning curve.

Is there any chance that for now you could work slightly less hours? Lead up to getting back to full time work?

I’d speak with your nurse/neuro regarding some help with the fatigue and any other troublesome symptoms but keep in mind that all drugs have side effects of some kind or another, but it doesn’t necessarily follow that you’ll be affected by them. It’s trial and error really.

Finding the right balance is definitely the key - but it’s not always easy to do, again it’s trial and error, discovering what suits you best.

Good luck

Debbie xx

Fatigue was the thing that made me stop working full time. It was simply impossible

There are meds these days though and I do wonder if things might have been different if I’d been able to get modafinil then. Unfortunately, getting modafinil is not always easy these days - most PCTs don’t allow it for new patients. There is amantadine though - it’s licensed for MS and some people find it helpful - definitely worth trying. If I were you, I would probably try and argue a case for modafinil first - see if you can get it in your PCT before it joins in with the rest! It doesn’t work for everyone mind you, and even for those of us it does work for, it doesn’t remove the fatigue entirely.

If you can get meds that help, then it will certainly take the edge off your fatigue. Dealing with what’s left as best as possible is a matter of doing what you can to reduce things that make fatigue worse. Can you work less hours? Would delegating certain tasks make a difference? Can you have a nap while assembly is on, or during lunch? Would a different classroom or not doing playground patrol or… help? Making things easier at home will help too. Can you get a cleaner? Can you delegate cooking? Can you send the ironing out?

Will pushing through the “exhaustion barrier” cause a relapse? Really sorry, but I actually don’t think there is an exhaustion barrier to push through. In my experience what lies beyond the exhaustion barrier is more exhaustion

Saying that, I have found that when I am very tired during the day, I can push through it - after a few hours, I begin to feel better. (If it is very bad, I have to have a sleep.) However, when I am fatigued every moment of the day, the only thing to do is stop. If I don’t, I relapse. Of course, this is just me and we are all very different.

Karen x

Thank you Karen and Debbie, I’ll ask for Modafinil. Ironing already goes elsewhere

I’m used to tiredness so will be able to cope if it’s there at a much more manageable level. Head of Senior School asked how I am today and said “we must look at your timetable, maybe take Year 6 off you”. I love Year 6 but obviously health is more important. School are looking out for me so that’s half the battle done. Think I need to overcome the embarrassment of going to matron’s room for a sleep at lunchtime and just do it!!

I was literally unable to stay awake yesterday evening sat in the kitchen while my partner cooked. I also spasmed more again last night and had a wobbly leg today so will be careful. Karen, you answered my question re relapse - I meant if I push push push trying to ignore the fatigue rather than push ‘through’ it. Sounds like ‘yes’ it will trigger a relapse.

My skin still feels horribly ‘ill’, all waxy and weird - the left of my head and my right hand. Is this how I’ll feel forever now!!!

Scary to be sure.

Dx

I can definitely vouch for the lunchtime nap - it’s what I used to do when I was working full-time and it made a huge difference.

Good news re the Yr6’s. I know it sucks a bit, but it will hopefully allow you to really enjoy teaching the other classes.

Sorry to say that, yes, you may always have the funny skin feeling. However, it is absolutely incredible what we can get used to! So don’t give up hope - one day you may realise that you just don’t notice it any more.

Kx

Hi Jackie - welcome back to the site! You are clearly still suffering so you’re in the right place. You write perfectly well, maybe just lacking a little confidence?!! Let us know what’s been happening with you as I’m new on here and don’t know anyone from the past at all.

Deb