minnie
4 days ago
Work is a struggle…

Work can be an absolute struggle when you have MS. Don’t you think?

I work full time and it’s a stuggletter just to get out of my bed at times let alone reach to work on time. It’s strange because I always feel guilty when I have to leave work early to go to the hosiptal. I always feel like people may feel that I am lying about having MS because you can’t see it.

What would make going to work easier for you?

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I feel exactly the same as you! Mornings are sooo hard. Thankfully my colleagues are very understanding though. Coffee, snacks and regular breaks help me 🙂

@minnie , unfortunately others will feel and think whatever they like. You shouldn’t concern yourself with those who want to be small-minded.

If getting to work is a struggle for you, is there any way you could make the journey easier for you, e.g. taxi? If so , the Access to Work scheme may be able to help you out with the additional cost, https://www.gov.uk/access-to-work .

Oh, those mornings! I’ve never been a morning person but since being diagnosed a year ago it’s unbearable. The thing is, I’m working full time and might not look from the outside that I have MS. But inside, it’s with me every minute and that is so very hard. I’m in a fairly well paid job and all the reasonable adjustments aren’t going to make my position sustainable. Ideally, I’d like to cut working by half, but financially that’s not possible. So for me, it’s all about the weekend. No plans, just doing nothing. That and planning an early retirement! I understand entirely @minnie x

I advice to ask you gp to give you a report on proves that you suffer MS.
When I was in scotland i did that.
And yea morning jobs are quiet stressful for us. I had breakdowns when I was at university the day I had to go for a morning class.

But when I was in edinburgh O was hyper actuve the first month waking up every morning great smart student dress up well but the lastest month I missed so many classes because of how MS kept me in bed.

Now in Saudi Arabia I have a job with an evening shift. Another life totally. Active and never stressed.

But if you had to go in the morning have 3 eggs on breakfast eggs do wonders.

Best regards
Chef Reem 💔😂

Hi minnie
I had to stop work because of my MS. I am now doing volunteer work and a bit of self employment stuff (the only types of work that can fit around my condition).
My advice would be to try and think about whether it’s really worth it – in the larger picture of your life. If you are making your MS/life/health worse by pushing too hard to get to work and therefore not really living happily – then don’t. Not worth it. 🙂
That’s easier said than done – it depends on whether you are able to change jobs/lifestyle, or you can get help while unemployed, or if you have magical funds tucked away. I definitely don’t have the latter! 🙁
Never, ever feel guilty about going to the hospital. If anyone questions it, then it’s their problem, not yours. Really. Don’t spend so much time worrying. It’s just a waste of your time. I need to give that advice to myself!! I hate pulling into a disabled carpark – I worry what complete strangers will think!
Hope any of that rather frank ramble helps. 🙂

Hi Minnie
I also found and still find work a struggle at times. I am in a high stress/emotional labour job.

My solutions get super organised so you eat really well all the time and always eat lunch and lots of healthy snacks. Take a flask of coffee to work so you can get an easy caffeine boost. Have a resting chair (mine is an IKEA poang chill chair) next to your work station to take 10 mins here and there (this is my signal to colleagues that I will be up and running shortly but to hang on until then) Very early bedtime and sleep (it really gets me down that I will pay the MS tax if I do anything in the evening during the week but such is life)

Finally I aked to work 4 days a week as a reasonable adjustment. This means I rest on a Wednesday or if I am feeling good do all my chores and most importantly I get all my appointments whenever possible on that day so I don’t miss work. This also helps me to do things at the weekend as I don’t arrive at Friday in a exhausted state fit for nothing. I am on a fairly low wage anyway and already receiving child tax credit so some of the money loss was cushioned by an increase.

Also people forget you have MS especially if you are a super trouper about work and not letting it show. I occasionally will drop it in a positive way e.g. yes my weekend was great I managed a lovely walk which really helps my MS. I do think a lot about how people perceive me but the people who count are the clients and your boss. If they are happy with your work then blow off the rest of em.

It’s rubbish isn’t it? I’m a secondary school teacher and feel so guilty when I have to take time off. I had just under 2 weeks off before Xmas with vertigo and the kids’ reaction when I went back was as if id been off for months! I suppose 8 lessons is a long time when you’re 16. I felt crap earlier this week when a student used my absence as her excuse for failing a mock exam but in the end had to reassure myself that it’s not my fault. I couldn’t have worked while the world was spinning round my head!

Oh most definitely. Now I only work part time and only do 20 hours a week but it is in retail so you can imagine how busy we get especially during Christmas time but luckily my employers were completely understanding about my condition especially when I came back from having Lemtrada. Now most days I can get through the week OK as I do take a 15 minute break each day to help me not only physically but also mentally but recently I found that even that might not be enough so I’m now allowed Wednesdays off as a reasonable request. Obviously I’d take a hit financially at losing more than £100 a month once I do start taking Wednesdays off but I’d rather lose the money than keep overdoing and end up making myself bad again.

Interesting timing for this post! My annual review is today, and I’ve been toying with the idea of having an honest conversation with my boss about my MS. Our workload is huge and it’s very stressful (I work in employment law as a paralegal). My ability to multi-task is all but gone (even jumping from one task to another takes me more time than it should to re-focus my brain) and my memory is terrible. Here in the US (I think it’s probably similar in the UK), my employer has a duty to accommodate any reasonable request I make but the problem is I think the only accommodation would be a bigger staff to handle the workload — which isn’t going to happen (and would likely be unduly burdensome to my employer, which would mean I’m out of luck). I take pride in my job and I want to do it well. My boss does know about the MS although I’m not sure he really understands about cog fog. I’m concerned about how long I can do this job without messing something up. I adore my boss and I do love the work… I would just love a little less of it. Wouldn’t we all??! 🙂

The problem is this job pays well and offers me a lot of flexibility. If I did make less money, at a job with no flexibility, that just brings about a whole new set of stressors. So I think better the devil you know?? That’s my situation anyway. My son will graduate high school in a couple of years. When he’s in college, we can move to a smaller house and I can work part time somewhere. I just need to hang on for a couple of years.

But yes, work is hard. Harder with MS.

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