Forum

Work and ms

Since diagnosis how long have you still been able to work? Is there an average of how long ms people are expected to be able to work? It’s a worry thinking we may not be able to work until retirement age.

I was able to continue working full time for 9 years after diagnosis,

Then spent 1 year doing reduced hours (…down to 15 hours per week) before being retired on health grounds.

I don’t think there’s an average. Everyone’s MS is different. There’ll be big variations in how severely it affects a person, what it affects etc.

Some people get diagnosed with relapsing-remitting MS initially and during remission there may be very little physical issues. I’ve heard of people going 20-30 years or longer without relapsing at all.

I’ve also heard of peolpe relapsing badly every couple of months!!

Myself, I had secondary-progressive MS when I was retired. Slowly but surely the aspects of my job that I was no longer physically able to do - despite adjustments being made for me - decreased until I was no longer able to do very much at all (…not even write, type or sometimes speak!)

Only an individual can say whether they’re able enough to continue working - there are no ‘rules’ as to how long that may last. They just need to be honest and fair with themselves.

Dom

Everyone is different and I am not sure that averages help much. For what it is worth, I stayed full time for five or six years, then went down to three days a week for a few years and then was medically retired.

Alison

Hi I was dx nearly 11 years ago and still work 34 hours a week. It not only depends how ms affects you but also what job you do. I changed jobs just before dx. If I stayed in my old job I would not have been able to continue. There is help out there like ‘access to work’ to assist with staying in work. Look at what you do and how you can manage it to your best of your ability. Regards Neil

I was diagnosed 28 years ago and stopped this year. I have had secondary progressive for the past 15 years but just woke up one morning this year and decided enough was enough. I was a social worker and the pressure took its toll until I had enough. I knew my mobility was being affected by my situation and that the fatigue was becoming a killer. So I just decided to stop although I suppose it is a case of be careful what you wish for as I am bored and looking for something to occupy my time. Hopefully something will come up. Gary

It depends on a number of factors… What you do, your journey to and from work, support from employers and colleagues, how many hours a week you need to work, etc. I was diagnosed in 1999 and still work 4 hours a day. It’s near my home, I can park at the back of the office and the people I work with are great. So there’s no reason for me not to carry on.

Diagnosed in 2001 and went part time last year but I still do 30 hours a week. I work in an office. I’m 39.

I had my first symptoms 5 years ago (almost to the date actually), was dx’d 4 years ago and reduced my hours by 2 as I was doing a bit of cleaning that was more physical so I cut that out. I still work 30 hours a week but am lucky in that I work in a high school so only work term time and that makes a huge difference. Having at least a week off every 6-7 weeks helps to recharge my batteries.

I’m an administrator so although it can be stressful, it isn’t physically demanding and as long as I can talk and type there should be no reason for me to continue doing a job I enjoy for many years to come. I’m in a good pension scheme and I intend to pay into it for as long as I possibly can :slight_smile:

Tracey x

Should say 20 hours per week !!

Myself, I had secondary-progressive MS when I was retired. Slowly but surely the aspects of my job that I was no longer physically able to do - despite adjustments being made for me - decreased until I was no longer able to do very much at all (…not even write, type or sometimes speak!)

Should say “…slowly but surely the aspects of my job that I was no longer physically able to do - despite adjustments being made for me - increased until I was no longer able to do very much at all…”


…And so, having demonstrated a complete inability to count or write correct english …I presume my University place is now assured ?!

Dom

Hi All

I’ve only been diagnosed since March but have been relapsing every couple of months. Guess I’m one of those people liamsquash heard about. I’m a teacher but only been in school for two short periods of phased return in last 12 months, couldn’t cope with full time demands. Currently at home waiting for call from nurse to start Avonex, hoping it will at least stabilise me, but pondering part-time future or ill-health retirement. Not sure how we’ll cope with drop in income if I have to drop hours or retire. Future looks very bleak.

My symptoms started in january this year, i was diagnosed in october & have had to have 5 months off work (office based) I returned on a 20 hour a week basis for 2 months after being suggested by a dr. I’ve struggled even with 20 hours & have to go back to full time 35 hours in a couple of weeks & I’m dreading it.

Access to work have been in to my work & approved a speaking computer & special chair, which I havent got yet but this is costing the company over £1k. I have now had to approach Access to work again as my driving licence has been revoked due to the ms & they are in the middle of helping me get a taxi to & from work each day, which could cost the company £300-400 a month

So I’m costing the company over £5k just to work there & I feel terrible that I’m not as good at the job now than I was last year

I have yet to see an MS specialist so I’ve no idea what ‘secodnary progressive’ or ‘relapsing-remitting’ ms means or what type i have & I just don’t know how long im going to be able to carry on working for.

so confused/worried