Last reply 1 year ago
Work work work

Hey guys,

Just wondering if you guys have continued to work after diagnosis? I was diagnosed in early 2016 and fatigue has gradually gotten more and more of a grip on me. Over the last month or two my legs and ankles ache 24 hours a day. There is NO relief. My job is quite stressful (usually the people more than the tasks) but since diagnosis I find myself thinking that stupid tasks and petty debates at work are really the least of my problems and I have regular visions of myself just walking out. I commute to work, get up at 6, travel for an hour and a half, work for the day and then travel another hour and a half home. At that stage, I’m ready for bed. I’m not fit to boil an egg most days.

Did you all continue to work? If so, how do you cope? If you gave it up, at what point did you decide you couldn’t do it any more? And finally, what are the financial support systems like for PwMS unable to work?

Thanks

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I wasn’t even fully diagnosed when my doctor put me off work.. stress can bring on an ms attach and just isn’t good in general.. im only 26 and not working at this point in my life makes me feel like I’m failing. But everyone is different.. some time off from your work would be good for you I think 🙂 if nothing else.. just to de-stress your body 🙂


mari365
1 year ago

Hey, I didn’t take any time at all off work during my diagnosis. I took days off for MRIs and Lumbar Punctures but when I got my results it was very much like “ok, you have MS, that’ll be €150” and I was back in work the next day. I’m 28, edging closer to 29 next month, I’m on medication for depression which seems to get into a vicious circle with the MS. Depression can be a factor of MS but I’m depressed because I have MS. So I wake up every day thinking why am I bothering with this sh*t. Are you working at the moment @nikitadawndelorey


niccis
1 year ago

I have continued to work full time in a management role since MS first appeared in Nov 2015. I ploughed on for most of 2016, trying to ignore the fatigue which was creeping up and preventing me from taking part in life after the working day was over until Oct when I just couldn’t do it anymore. I had a relapse and the doctor signed me off work- in the end for 8 weeks. I’ve since changed jobs and am on medication for fatigue and things have been better since Xmas, although now I’m off work again with what feels like flu. I’ve been in bed since Friday night and feel horrible and am wondering whether it’s just my body’s way of telling me I’m still pushing it too hard. As far as how people manage MS and not working, we have just found out that our critical illness policy on our mortgage will pay out which has made a huge difference to us. I wouldn’t have dreamed that I would be able to claim while still working full time- is this something you have that you could consider?


mari365
1 year ago

Funny you should mention that, I discovered my mortgage had cover for serious illness (which should really be highlighted to people with MS more) so I have a claim pending. I think the thought of having the mortgage paid off is pushing me more towards giving it up. If I am lucky enough to have a baby in the next year or two, I had planned on giving up work anyway to raise the baby so if I’m mortgage free why not do it a bit earlier?

I’ve often found myself stuck to the bed for entire days and taken that to mean that I have pushed my body too hard over the last day or two. I try to listen to my body more now, if I get tired, I rest. Being too tired to even talk doesn’t always work well in a job though.


niccis
1 year ago

Tell me about it- I couldn’t stand up in the shower this morning so knew I wasn’t going to be able to stand up and teach teenagers all day! I hope you get a result with your claim. Ours took 3 months and I did have to make lots of chasing phone calls to keep it moving but the decision making process was actually very quick and required very little info from me.


missmoona
1 year ago

Hello.. I had a really stressful job.. but after a repalse, I wasn’t diagnosed by then but I decided to quit the job – it wasn’t doing any good for me. After a couple of months off and then I start my new job with stress free and my manager is very supportive, I work for home once a week, I start various time .. like 11am to 7pm instead of 9-5pm.

Hope you’ll get a well deserved rest.
Moons


marcyg921
1 year ago

Yes, I’ve tried to go on with life as normal, most of the time I manage fine, but there are times when it just gets too much and I just want to leave


mmhhpp
1 year ago

Hi, i carried working for nearly 4 years and then i had to stop because i no longer could stay long hours standing up and my lack of balance was horrible…. they would not accommodate my disability…. i had to go. It was the right time to go, i have gotten much worse since….i get so tired sometime i cannot even speak loud! My days are spent surviving ….


rhymenocerous
1 year ago

Hi @mari365 I was just wondering whether you’re aware of the company’s legal obligation to make reasonable adjustments? I’m currently off on long-term sick, not MS-related, but before that my company put in the following adjustments which meant I could go on working for quite some time and have energy to live my life too!:
* flexible hours
* part-time hours – just taking 1 or 2 hour off my 8.5 hr working day made the world of difference to me
* working from home for 2 days of the week to ‘recuperate’ from travelling, busy office etc.

It does depend on the size of your company but know that working is not a black and white choice, there are many other things you and your employer can try. MS Society has a brilliant campaign about it and good info.

Mel x


tracyd
1 year ago

Hi @mari365
I had changed jobs in the year before I was diagnosed because the commute and the travelling left me almost permanently exhausted. There were other factors in play, my Mum was terminally ill I was travelling from Hampshire to Bolton every weekend to be with her and move her closer to me but I just couldn’t get used to the commute.
The job change to something closer to home helped a lot, but with the diagnosis came what I call the ‘failure of my fuckwittery tollerence level’. The job I do, the projects I manage really don’t have any meaning for me, I go through the motions but I genuinely didn’t care any more – I still dont a year and a half later.
It all seems terribly trivial and meaningless in the great scheme of things now.
I’ve had my treatment, my MS is in remission life is normal again for me, but if I’m honest I’d rather be doing something ‘meaningful’ – I’ve never been terribly good at following things through outside of work, but Ive found that keeping the blog going, talking to others with MS, helping my friends when they need support all means far more to me these days than the high powered project manager role that I’d been doing for years.
I’m re-working the balance in my life right now and hopefully by the end of this year I will be changing directions completely to something that does mean something to me, is meaningful for me. I will still be full time but doing something I care about. Full time hours will still happen and I don’t want that to change (it’s why I chose the treatment I did so that MS would never dictate my life to me)
The re-evaluation of what’s important is something that I think pretty much all of us go through, taking the time to make your decisions and changes rather than rushing into something that might be difficult later to change I think is very important.
Sorry – rambling again
Stopping now 🙂 xxx


sarahshift
1 year ago

Hi all,

If you’re in the UK, you might be interested in this consultation the Government are doing on disability, long term conditions and employment.

There’s a survey where you can add your voice to the campaign http://www.surveygizmo.com/s3/3259106/Welfare-and-employment

Thanks
Sarah


thingy003
1 year ago

I’m still working and intend to keep working for as long as I can. I have having to make some adjustments to my attitude to work now and I cannot afford to get angry or lose my temper at work as doing so just hits me for six afterwards.
My work have been very supportive and have agreed via our Occupational Health adviser that I can work a couple of days a week from home if I need to. My main concern is that I lose my company car in September as the job I do now no longer qualifies for it and I can not afford to buy one myself and the commute by public transport would take me over 2.5 hours each way 🙁


munchies
1 year ago

I’m still working and plan to work as long as I can too – not until retirement age though!!! I think if you can work it helps to keep you motivated etc. 🙂


shopaholic84
1 year ago

I’m glad someone has posted about work. I had good news today that I have a new job. This job will involve more hours but in comparison to what I do at the moment which is standing for long periods I am super happy. I will be working 20 hours max a week.
I was very excited at the good news but then started to have a wobble of fear incase it’s all taken away like my legs stop working, I won’t be able to understand things or my sight going at not being able to drive to work or take the kids to school.
Really trying to stay positive. I’m starting my dmd in a few months so to at least learn my new job in case any side effects kick in.
So pleased to see some people are able to carry on with some adjustments.
I know if I have to give up work family is more important but I’d like to be able to bring in some dosh and be a little independent!!


stumbler
1 year ago

@shopaholic84 , there’s no point in worrying about the future. No-one knows what’s going to happen to them in the future, MS or no MS.

Live for the day and let the future look after itself. You don’t want to spend all your time worrying about things that may not happen. 😉


cadwelder
1 year ago

No better advice anywhere than stumbler just gave, no point in worrying about what you can’t fix. We can only treat but not fix it (hopefully that’ll change in the future). My MS hasn’t really hit me too awfully hard yet. Just mild attacks like numb feet or weird hands. But they come and go and so far hasn’t gotten me down too much.

Enjoy live all you can and keep on keeping on. As far as work…so far not a single day missed…


littlevampette
1 year ago

Have been working since my relapse 4 years ago. Even when could barely stand used to commute up to London. Thankfully now I only have to do that once a week if really necessary. Normally can just work from home. Was going to give up work completely but for now have reduced by work week to just 4 days but may be reducing it further this year. Have been thinking a lot recently about early retirement but at the moment just awaiting my PIP review before I do anything with that and also whether to just take a year off work instead and perhaps look for a new job.


marydev
1 year ago

Hi
i was diagnosed 5 years ago at 44 yrs fought against the ms the whole time couldnt step down in work no matter how hard i tryed i was working under the radar i got very ill end of last year new i had to make a decision as i was becomming unreliable
but the company has made it for me i was been made redundant, my diagnosis was changed from RR MS to Primary Progressive MS with a COPD and Fribromigla for good measure .i worry about my future and the future of my family it is going to change drastically but i am the stage i know its time to go.

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