Sudden severe onset likely?

Hi I am still trying to decide what to do workwise and after other options were rejected I have 2 choices: use parental leave to take a 4 day week, or else resign. Money would be extremely tight on one salary but also if I am the full time carer for 3 young kids and get ill, if I am not employed I get no sick pay so my husband would not be able to afford to pay bills and childcare but could not afford to give up work. We’d be screwed. 4 full days is more than I envisaged though and feels like a lot of time away from my kids. My question is…in your experience how likely is it that a relapsing remitting person with mild symptoms will suddenly get a severe symptom eg paralysis / severe optic neuritis that does not go away substantially after acute treatment with steroids or whatever? I don’t know if I am being sensible and doing the right thing or overly cautious and mortgaging my life on a vague what-if! Thanks!

Hi,

Relapses are, by definition, unpredictable. Yes, you can have severe symptoms quite suddenly, but I’ve no idea what the statistical likelihood is for any given individual.

I know that I have gone to bed feeling fine (well, a bit tired, maybe), and woken up in the morning with completely numb feet and numb pelvic region. I don’t know if you would count these symptoms as “severe”, as I was not, strictly speaking, disabled, although walking ability was affected, with strength and stamina both reduced. These symptoms took months to resolve.

If you were unexpectedly to become much more disabled than you are now, I’m sure you would qualify for something additional in the way of benefits, but impossible to say what, exactly, and we all know there’s a big backlog in assessing new claims.

I’m sorry, I can’t tell you what you should do. You might go many years - or the rest of your life - without sudden onset, severe disability, but I couldn’t tell you it will never happen. I don’t think even knowing the statistics would help you, because statistics are pretty useless at predicting what might happen to you personally.

I can’t remember how long you’ve been diagnosed. In general, the best guide to the future behaviour of your MS is past behaviour, and relapses tend to be most frequent in the early years.

BUT there are people here who have had a sudden, severe relapse, even after years of low disease activity, so although it gets less likely, it never becomes impossible.

Tina

I don’t think there is a liklihood as such. Everyone is different and it is so unpredictable. I have had m.s since 2004,worked full time until 2009 then reduced to 3.5 days following the birth of my son. This for me works out fine. I’ve had three relapses since 2009 so they have got more frequent but in all honesty I think an operation caused the last two. However the first two I worked through them, the last I had five weeks leave. Work are very understanding and know this is something out of my control. I have been relapse free nearly 18months and work is fine. It helps as I love my job. Best of both worlds I feel I have at the moment! If you think four days is too much would they meet you half way at three days? That’s a happy medium. We would miss my salary too…we’d probably manage but we would have to go without holidays etc which I think are important to relax and have family time. Hope I’ve helped. X

I don’t think there is a liklihood as such. Everyone is different and it is so unpredictable. I have had m.s since 2004,worked full time until 2009 then reduced to 3.5 days following the birth of my son. This for me works out fine. I’ve had three relapses since 2009 so they have got more frequent but in all honesty I think an operation caused the last two. However the first two I worked through them, the last I had five weeks leave. Work are very understanding and know this is something out of my control. I have been relapse free nearly 18months and work is fine. It helps as I love my job. Best of both worlds I feel I have at the moment! If you think four days is too much would they meet you half way at three days? That’s a happy medium. We would miss my salary too…we’d probably manage but we would have to go without holidays etc which I think are important to relax and have family time. Hope I’ve helped. X

hi

it happened to me but i know of no-one else to be affected in such a severe and sudden way. i dunno what to suggest re work. all i do know is live for today-which is not helpful when u r planning for future. it is so rare i would tend to think that u will remain stable.

take care, dont fret re being very poorly-it prob wont happen.

ellie

Apart from what has already been said above, don’t forget that you are covered by the Disability Descrimination Act in that you employer will be expected to make ‘reasonable adjustments’ to enable you to keep your job.

If 4 days it too much for you, then discuss with them the possibility of less hours, or working from home for a day? If at some point it isn’t working out, they may offer you redundancy, or medical retirement, but please don’t resign.

Mags x

I asked for 3 days and they said no…I told them about the diagnosis and they still said no. Using parental leave to get a 4 day week was their suggestion before they knew about the diagnosis and they offered nothing further when I told them except saying we’d review it when my parental leave is all used up. I’m in Ireland by the way so not sure what legislation protects me. If I resign I have no sick leave, ill health retirement etc and money would be very tight. 4 days will be stressful logistically and means seeing the kids less than I’d like. I could go back full time and my husband resign (I earn more than him) but aside from him not having the patience or temperament for this to suit him (I feel), if I did become ill I’d be the breadwinner so once my sick pay ran out we’d have no income and if my husband went looking for a job after years at home, his skills would all be out of date - he’s in IT. Seems like a big risk also.

All I can suggest is trying to distinguish between the things you know, the things you can make a good guess at, and the things you cannot make a good guess at. For instance:

You know that if you stay employed and get sick, you will get sick pay up to your contractual entitlement. You also know that you have some statutory protections under the Equality Act, concerning reasonable adjustments and so on.

You can make a good guess at what would happen if you got very sick and needed more time off than your employer would tolerate - in the end, they would have to pay you some money to go away. You can make a reasonable guess that your employer knows this too.

You cannot make a good guess about how your MS will behave, because you just don’t know that.

It is horrid, being faced with toss-of-a-coin decisions where we just cannot have enough information to proceed with any confidence. In the end, I think it is just a matter of taking as clear-eyed a view as you can about the knowns and unknowns, and then just going with what feels right. Please remember that, with so many uncertainties, a carefully thought-through decision will never be wrong, even if hindsight makes a person wish that she had done something different! I really hope that it all works out well for you, whatever you decide.

(One thought - try tossing a coin, and see what you feel about the outcome. Seriously, it can be a really good way of getting to the bottom of our feelings when life is being very complicated. If you are relieved when it comes out ‘heads’, that tells you something. If your heart sinks, and you decide to make it best of three instead, that tells you something too!)

Alison