MS and work and coping in general


I haven’t been around for some time as I have been symptom free generally bar a few numb bits. I was diagnosed with RRMS over 2 years ago and double vision was my main problem when I relapsed that time and led to my diagnosis.

I had (am having) another relapse now and this time I am having the dreaded MS hug on one side around my ribs and up to my neck and numbness/pins & needles all down my left side. I luckily had my annual review with the MS doc a few days ago and so she has ordered a new MRI and I had some bloods done.

My main concern at the moment is work. How in gods name does anyone work when they are having a mobility related relapse. I was able to carry on as normal pretty much when my eyes were bad as they were corrected by the orthoptist with prisms. It took about 7 months for that to get back to some sort of normal.

What do you all do if you can’t work? How does your employer react to taking time off eratically and then not knowing when you will be fit enough to work again?

I feel if I can get this muscle tightness relieved I can probably cope with the pins & needles in my work. I have been prescribed baclofen for the ‘hug’ and I am due to start taking it tonight. My legs feel wobbly and i’m walking unbalanced as I can’t feel my feet properly so probably shouldn’t be driving but as I am on my own during the week (hubby works away) I really don’t have much choice with 2 young kids to see to.

I know I am only a week into this particular relapse and it could be much worse, but I am having a day of doom and gloom and thinking all the worst scenarios that could be.

Any wise words would be appreciated.

Nette x

I’ve got no wise words Nette but I’ve been having similar worries so just wanted to say you’re not alone! I’m on my 4th week of annual leave which I booked as I was struggling to get over relapse. Due back on Monday and started a few days ago with double vision in right eye and balance problems. Worried about how I’ll cope back at work. I mentioned it to ms nurse who just said I must put myself first. Makes sense but easier said than done! Hope things pick up for you. Have you anyone who can help out with the kids so you can have some proper rest?

The kids are at holiday club during the day at the moment so I just have to take them then pick them up later. I don’t know about rest though. Does hobbling up and down stairs with washing count!

nette x

I took best part of four weeks off sick (doctor gave me a note) for my last relapse (numbness, right leg and arm weakness and utterly dreadful fatigue), I then asked to go back part time with a view to increasing my hours back up. All went to plan apart from the increasing hours thing, I never did manage to do full days again and the one time I tried I wiped myself out and was off sick the next day. I start permanent part-time hours next month as I just can’t keep up anymore.

tHi Nette, Sorry I don’t have any words of wisdom but I completely empathise with how you’re thinking, I’ve just had to get signed off work as i am still struggling with an 11 week relapse. i’m also having severe muscle spasms and can’t grip anything with my right hand and everytime my arm moves, it’s totally agonising and i admire people who have to struggle through work when they are relapsing. i had the hug last year so I know just how uncomfortable you must feel. Hope you come out of it soon x

Sorry, but people keep referring to ‘the MS hug’. What do you mean by this?

Thanks Forest x

It is the intercostal muscles between your ribs going into spasm. It feels for me, like I can’t breathe out properly and like its all contracted on that side where its affected. It feels like a constant braxton hick contraction (during pregnancy, sorry if you are male and it is in no way a helpful comparison!)

nette x

Do your employers know about your MS? If not then personally I’d advise you to tell them as it makes it a lot easier.

I’ve been having symptoms for about a year and am diagnosed since Dec 2012.

I was off for 6 weeks last year and then had various days here and there for appointments and MRIs. I also had several 3 day stints of IV steroids which involved taking a week off at a time.

Work have been great. Financially it’s been a nightmare as I amn’t paid when I’m off. But other than that, there hasn’t been a peep about my absences. And rightly so as I am protected under employment legislation.

When i’m unwell I just call my GP and ask for a cert, give it to work and that’s that. No more said about it.

In the past 12 months I think I’ve missed about 43 days sick. Which is 8 and a half weeks. Terrible really but the bulk of it is certified or I had appointment cards etc.

I’m hoping that this is just the initial problem and that once I have a DMD which works for me it will settle down a bit. But even if it doesn’t, I intend on staying in my job for as long as I possibly can.

Now and then I feel bad for my co-workers as I know it’s not fair that I’m so unpredictable and basically unreliable. But then again, I didn’t ask for this disease. I certaintly amn’t faking and if I could take it away I would. I don’t want to have 8 weeks unpaid a year. Its not really a cake walk for me either. I try not to let it affect my co-workers too much but some of it is inevitable. And if I let the guilt of that get to me, I’ll just make the situation worse for myself.

Yeah, my employers know about my MS and its not that they are being funny with me at all, but it’s me who feels awful for leaving them in the lurch. I am a practice nurse so all my appointments have had to be cancelled, all the baby imms will be getting behind schedule etc etc.

I know none of it can be helped but its just opened my eye that my work situation is going to have to change!

nette x