Last reply 2 years ago
Work advice

Hi I am newly diagnosed (may this year) and getting my head around everything.
I had to have time off work earlier this year for 5 weeks which is the longest I have ever been off work apart from maternity leave. I returned to work on a phased return which ended in July. I have had occupation health assessments and involved and an assessment from access to work. I don’t yet have a reasonable adjustments plan in place but have been trying to manage the demands of my job and work from home a day a week. I am really struggling, I have nothing left after work and often return home full of things still to do exhausted and feeling ill. I know I need to get to a better place where I am more actively managing my health and in control of what I can do at work. I am in a senior position and often in large meetings and have to present information to large groups (up to 100 people) I am starting to get wobbly my confidence is going since my diagnosis and I am doubting my abilities and capability to function. I also feel paranoid that the chief exec is monitoring my performance constantly. I don’t know what to do I can’t give up but I can’t carry on and am worried I am going to make myself to having another relapse like earlier this year. I have just been to a ‘newly diagnosied’ day which was great to start with but as the day went on everything dawned on me and I just couldn’t listen to anymore… I will struggle to talk about my weaknesses to my employer I work in a high pressure environment with high expectations and challenging workload. The last person they need leading the agenda is a flakey wobbly inconsistent person which some days is how I feel about myself. I don’t know if I should plan to get out while the going is good/ok, solider on or take a side step (which I would struggle with mentally) any advice?

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2 years ago

Hello @kitty369, oh I so sympathise. I have a senior position in a school and even though I’m doing OK, it’s that huge blow to confidence that can quite easily and quickly turn to fear of speaking in public. I was diagnosed Dec/Jan and Iwould say that it’s probably taken nine months to fully process the news. Even now I don’t feel quite in the position to make decisions about the future of work for me, so maybe you should try and go with the flow for now. Now we (us MSers) have ‘protected characteristics’ in the workplace, we are afforded a lot of protection. So, your CEO might be monitoring your performance, but you have to be monitoring it more. Say something happens which you may or may not feel has been noted you others, keep a careful log of everything. Specially if anything gets written down by others. I know that seems quite a strange thing to do, but it’s important for your peace of mind that you have all the facts in order.

It’s great that you had a phased return to work. But your body is still recovering from your time out of work, so your workplace will need to honour this. I really hope you get back to full throttle soon, sending you love and support x

2 years ago

Hi @kitty369 , it’s a fine balancing act that we need to perform.

You have to weigh up the benefits of doing the job, in its present form, against the potential harm to your long term health. MS is very unforgiving and feeds off any stress that you are feeling.

Work is a temporary means to an end. It is just a proportion of your life. Your health needs to be considered as we need to try and preserve it for when our working life comes to an end. There’s no point working if it’s detrimental to our long term health.

We also have to consider our partner, kids, dog, cats and hens. 😉

Like I say, it’s a fine balancing act

2 years ago

Hi kitty

If you stayed home without a job i assure you’d be feeling worse i mean thought worries while
Cant say this job is the best for you try to find a short evening shift or something. Part time maybe. I was diagnosed 2005 but i’ve never stayed home since diagnose finished all my studies and traveled from saudi to scotland 3 yrs working and studying. Now im in saudi and have a job still

Work wouldnt kill you if you worked with the balance that suits your condition

Be safe

2 years ago

Am just in the process of finishing on grounds of ill health as I have reached the decision that I need my energy for other things – my job also was quite stressful and I had been struggling for a number of years – basically it was taking over all my time and energy and leaving me little room for anything else – after alot of discussion with partner and friends I took the choice of less cash but more energy for the things that mattered to me – this is daunting, work has always been a part of my identity and I still miss certain aspects but it has been the right choice for me. I think you need to take a bit of time to suss out your options and not rush into anything – if it’s too much go off sick again – talk to people work it out slowly – all our circumstances are different but as Stumbler says it’s a fine balancing act and whatever choices you make need to be right for you – take your time and good luck Lyn

2 years ago

Hi @kitty369. Your current issues and dilemmas are spookily familiar to me. I am in a senior role, often presenting to large groups of stakeholders (that’s what we call them), recently diagnosed, 4 weeks of sick leave in June with a phased return to work in July. Occupational Health assessments, end of day exhaustion and worry about being able to carry out all my duties. My GP and employer have both been incredibly supportive in helping me to reframe my working week (make no mistake about it, that’s what needs to be done because the real threat in our position is work-related stress – it just has to be put away so that you can get all the rest that you need).
I used my time off and phased return to talk to my bosses in detail about my condition. Their attitude (thankfully) was that I was no good to anyone if I wasn’t as fit as possible, so we looked at my workload and agreed on a strategy of one day in the office followed by one day at home. I always find that the second consecutive day on site is the most draining and I still have to do that occasionally (including last week) but in general I’m at home on Tues and Thurs. I also do a 9 day fortnight, so every other Friday is a non-working day. This cost 10% of my salary, but 26 days of extra leave is hugely beneficial without really affecting productivity. I don’t go to meetings where I’m not needed and I dial in when I’m off site but I actually find I get more done from home because there is time to focus without distractions.
As vixen says, you are protected because of your disability – you just need to work out what’s best for everyone.
Best of luck!

2 years ago

Thank you all your views are so helpful. I couldn’t sleep last week averaging about 3-4 hours sleep a night just stressing about workload and when everything was going to get done on top of being paranoid about what people are thinking about me and feeling guilty for WFH. I have been a mess all weekend, so some of your advise has really helped me gain some clarity. I need a firmer plan! I have a professional coach at work and she has helped me with the guilt for WFH, but from reading all of your advise (and similar dilemmas) I need to work out if my employer is going to be flexible and supportive enough to accommodate me working differently. Then I need to work out if I can do my current job in that new pattern.

If you retire on the grounds of ill health are u retired for life or r u able to work but just less? I need to pursue all options.

Life is to short to not have anything left or just be stressed and worn out, I just struggle as I feel very responsible at work for everything. It is starting to dawn on me I need to be more responsible for my health, los of people on this site are saying stress or pushing yourself to far makes u ill. So I guess learning when to stop or slow down is a skill to learn.

Thank u all

2 years ago


To add to what all the wise people above have said, i’d like to also highlight the importance of starting the day in the right place and taking short breaks regularly.

I try to mediate every morning before getting up, 10 minutes is very beneficial, but even 5 min could make a difference to your stress level, (I use an app,Headspace). Then during the day, you need to shut down once in a while, it can feel counterintuitive, but it’s a great investment in term on energy. Taking a 10 to 20 minute break mid morning to do nothing, BEFORE you’re tired and don’t skip your lunch break, same mid afternoon. As the OT explained, if your batteries go completely flat, it takes longer to recharge or might even become impossible. If you have little tops up during the day, your energy will be more consistent and you will be more efficient, less stress and everything gets better. That’s the theory anyway 🙂 I’m working on it at the moment as it’s new to me as well (dx Jun 16), i started on Friday and it kind of make sense although it’s hard to take a break when just 5 more minutes would allow to finish the job 🙂 . Good luck working out your new balance.

2 years ago

Hi Kitty
I’ve been diagnosed for 5 years now and managed to keep working – may be not as high pressure as your role but I found to set my goal to keep working and not be medically retired helped me put first things first.

The other thing that helped me was having a health coach and you have your professional one which is ace.

A diagnosis is life changing I agree but you are still you with all your capabilities you had before. Some employers will be unreasonable and some will not and some will be a mixture of the two – the known is all we can go on so try to stick with the facts and not that people are thinking this and that . I wasted a lot of time with this thought that I was no longer any good at my job and everyone knows – I was still good at it but it was my entire energy for the day. Life’s too short for all your energy on the job

Just keep swimming

2 years ago

Thanks you are all so wise I have taken a step back this week and made some different decisions and been a bit more assertive about what I can do. Also building in rest breaks or meditation is something I am going to experiment with. Lots of long train journeys over the next few days so more time to plan, rest and think. Eternally grateful alternative perspectives are great! It’s good to talk

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