MS and working

Everyday living
1

Hi.

I was just wondering if anyone could offer some advice or just any experience they have with this.

I have recently been diagnosed with RRMS but I am currently in the second quite debilitiating flare up I have experienced and this is the second time in a year that I have had to take substantial time off of work. I am begining to question whether I should be working as it seems to be for weeks at a time that I have to be absent and I am not really able to do my job.

Which is a harsh light of day for me because I love working, I am considering giving up work over the summer and taking some time to recouperate but I am worried that taking time off work due to sickness will make any future opportunities of work difficult, also I recently met up with a CAB officer who made it seem like claiming DLA (I know is being replaced soon) would be quite difficult with such a fluctuating disease. I have put in a claim for the lower end of the allowance but this is very little to live on and I am unsure whether I will be eligible for this?

A lot of the time I am able bodied, I get around OK but I get very tired and have balance issues due to dizziness and poor vision which seem to be a constant that flare up at different times of the day which makes work pretty difficult… Thanks for reading and any advice or just general pointers would be really useful…

2

Hi Kurst As far as work is concerned, I can only say you need to do what feels right, but remember that being off of work is not your fault, and maybe you are having a bad time at the moment and that might improve. As far as the CAB advice, I am very suprised he said that. The chap I saw helped me fill out the dreaded form and was brilliant. I was awarded DLA after being refused the first time I applied on my own. Perhaps you could see a different adviser? Best wishes x

3

Hello kurst i really admire you for wanting to try to keep going work my husband is the same he really struggles and has no central vision in both eyes.He said i want to keep going for as long as i can he is currently waiting for diagnosis.He has had lesions found on his brain and areas of abnormal activity.He will have to stop eventually,what line of work are you in?could you have flexi hours or reduce you hours.My husband works 5hrs a day but its a struggle ,xx julie

4

Hi Kurst - I’ve recently reduced my hours at work, so from beginning of June I’m doing 4 mornings a week. It’s only Monday on week 2, so early days, but so far so good. I can come home and have a rest before getting on with other things if I feel like it, or taking it easy if I don’t. Before I was totally exhausted by the end of the week - and crashed out over the weekend so I’d got some energy for work again on the Monday. Obviously there’s a financial implication, so it may not be feasible for you, but if you can manage I would say it’s worth it.

By the way I was dx RRMS in Nov, but when I saw the consultant a couple of weeks ago he said that “there is progression”.

Hope that helps,

Hazel

5

Although it is more difficult to apply for DLA (PIP from today) with a fluctuating condition it is by no means impossible and many thousands of MSers do claim.

I would advice joining a website called Benefits and Work (about £20.00) who have excellent guides to filling in the forms and discuss the way to apply with a fluctuating condition.

You should apply for PIP regardless of your work situation. It is not meant to be an income replacement benefit and it is claimed by many who are still in full time employment.

With regards to your job – could you reduce your hours (If you do 16+ hours you can apply for Working Tax Credits to help out financially) Could your employer make reasonable adjustments to make it easy for you to carry on. (Access to Work can help here)

If you do decide that you can no longer work the benefit that you need is Employment Support Allowance. You can also get help with this at Benefits and Work. ESA is meant to give you an income that you can live on (supposedly!) DLA/PIP is to help with the extra costs that you incur due to disability.

Fee free to PM if you have any questions that I might be able to help with

Jane

6

I work, purely because I still can. It keeps my mind off things.

For the last few months the pain and lack of my legs wanting work has kind of made me depressed. Im agony most days now, and it has come on over a short space of time.

If you want to work, do so. If not, you take the time you require to recuperate

7

I had a really bad time in my first year and had a lot of time off work. I reduced my hours a little and still ended up apologising at one point as I had to work short hours again for a while and felt more of a burden than a useful employee. My employer told me not to worry about it. They appreciated I had always been a hard-working member of staff and that this was a temporary problem, if it became a long-term problem they would be led by me as to what was required ie job share, further reduction in hours etc.

After starting on Rebif my MS stabilised and I have had very little time off since so I am very glad that my employer was so supportive and understanding four years ago. It seems, from what I have learned on this forum, that MS tends to flare up for a while and then it can become fairly stable for some of us for several years. I have had a relapse this year after 3.5 years in remission (although, sadly, not symptom free) but going to work each day gives me something else to focus on.

I suppose what I am trying to say is that it may be too soon to think of giving up work altogether especially if it is something that gives you a sense of achievement and satisfaction. Maybe with some adjustments (reduction in hours, more rest periods, better facilities, a chair which gives better support, a footstool etc etc) you could carry on for several years. Of course, you can apply for PIP too and, as mentioned above, if you qualify then apply for Working Tax Credits too.

Best wishes

Tracey x

8

Hi, this really is a hard one, I’ve been off work sick a total of 10 months in the past 14 and although back at work now, I’m struggling but have to continue as my husband is unemployed and I am the bread winner, so my salary is needed to keep the house, my little boy etc…If you can manage to work, then do so, keep your independance, but if not then if you can stop then you need to do so for the sake of your health. Jools x

9

My advice is to avoid resigning, as you will get no severance pay at all, and might not qualify for any benefits either - PIP or ESA because you’re not considered ill enough, and JSA because you might be considered to be “voluntarily” unemployed, and anyway, you have to prove you’re actively seeking work to get it, which would rather defeat the object, if the whole idea was to relinquish work, for health reasons.

It sounds harsh, but financially at least, most people would do much better to persevere until the employer has to “let them go” through ill health, rather than walking away voluntarily. If you are allowed to take ill health retirement, there will usually be some sort of settlement, whereas if you just hand in your notice, you will get nothing.

With hindsight, I was very fortunate not to have resigned OR reduced my hours following diagnosis, because less than two years later I was made redundant anyway (unrelated to health). Obviously, if I’d jacked it in due to not feeling well, I would have missed out on the redundancy package colleagues got, just months later. Similarly, if I’d reduced my hours, before being made redundant, my redundancy settlement would have been reduced in proportion - even if I’d been working full-time for twenty years, but only switched just two weeks before getting the chop! Imagine how galling that would have been - not to mention leaving me in a woeful state financially.

So do think about how you can secure the best possible deal for the long term, and not just how nice it would be not to work. Take as much sickness leave as you need (you still get paid, after all - it’s better than resigning), and if, in due course, it becomes obvious you can’t continue, you may be offered a nice goodbye deal, which is a lot better than you’ll get if you just quit. Even if your private reason for quitting is your health, it won’t be treated any more favourably than any other resignation, unless your employer agrees you’re too ill to continue, and there is nothing further they can do to help you stay in the job.

Tina

10

Kurst,

The Equality act protects you on many angle’s here.

  1. your employer has to make reasonable adjustments

  2. As MS is a protected characteristic it is very dificult for employer to end your employment.

before doing anything rash call job centre and ask to speak to a disability employment advisor. you dont need to be unemployed to see one and they can give you loads of advise.

If you need to resign just make sure evrything documented i.e. travel to work fatigue, co-operation of employer etc, I had to leave a job because i made wrong decision and travel time of 1hr each way had major issue with fatigue and was not sanctioned.

11

Hi guys.

Thank you for all of the advice, it’s good to know that people have had the same dilemas. I am currently in correspondance with HR at my job, I have two jobs, I’m 25 and studying an OU degree, so only working part time anyway, I have reduced my hours from 35 to 18 and I am still struggling with those but I feel like it would be really rubbish if I quit my jobs and then start feeling better and couldn’t find work.

I really love working and I don’t want to lose my jobs, before I got the symptoms I worked 3 jobs and studied working over 40 hours a week, like 12 hour split shifts, so it has been very difficult for me to accept that I can’t do that anymore. I have been off work for a month and I am going insane, quite literally going insane but it’s like a viscious circle, I feel worse for not doing anything but too bad to try and do anything, I’m sure I’ll figure it out eventually.

I really do appreciate the advice. Thanks a lot guys.

Kirsty

12

Kurst,

I was doing a university degree and in 3rd year first term I could not get my head around the work because of memory issues with my MS and they changed the type of project to suit my ability but with similar scoring criteria. In the last term of the 3rd year I had a bad relapse and was not in for rest of year.

Potentially I should of failed but OU has to stick to local framework set by county council and there is a mitigating circumstances clause that if due to circumstances beyond your control you can get hand in dates extended. the other option is that if they believe you would have been able pass the module then they can award the credits due to mitigating circumstances.

In my case I was awarded 20 extra credits to give me 300 credits for a Bsc Pass, ok not the 2-1 i wanted but also not a waste of 3 years. NOTE: they will not assume you need these you have to ask usually there a for to fill in and email onwards.

13

Thanks.

Yeah the OU course is going OK actually, I have managed to keep on top of it and I am taking a break after this module ends and restarting the next module in Feb 2014, so it’s OK.

I wasn’t ever intending to give work up entirely, I was wondering whether I should stop working over the Summer, to give myself a break, I was just wondering how hard it would be to get back into work? However I am hoping to return to work next week, on reduced hours and take things slowly. I think it’s a case of managing everything in small loads.

Thanks a lot guys

Kirsty