Hello all, my name is Angela and I’m 42 years old, been diagnosed with ms 2 years ago although still nobody can tell me which sort … I am a financial director at a busy high street bank and I have a busy home life with 3 children. Since lockdown in March/April this year I have been working from home and that has helped a bit removing the daily commute etc but the fatigue etc is really getting me down now. I have balance issues and am finding myself struggling increasingly week to week with the strength in my legs just doing simple things like cleaning the house or a bit of gardening.
my job is and has been very important to me as I have been very career driven since leaving school, the role I’m in now is not a position I could request reduced hours for as there is to much involved, please don’t reply saying what’s more important, job or health because that’s won’t help or answer my question for advice.
what I am asking is this, at what point is it deemed acceptable to finish work completely due to ms symptoms ? And gain some sort of financial support in doing so. In my opinion I am still able to fulfill my role at the moment but my concentration is lapsing and fatigue is really starting to creep in now. Not sure how to tackle this. Just considering any options I may have in the future.
Hi Akos, I was diagnosed in 2006 with SPMS, went straight in at this, so within about 6mths I had to finish work, I worked in admin in a dental laboratory, I was the office manger, a job I loved, but it became clear to me very quickly that I could no longr hold this job down, fatigue, pain and balance issues, at first I found it devastating, I hated having to give it up, but for my well being I had to, so with the support of my hubby I did it. Now it took some getting used to, but when I did it was the best thing for me. At the time I had no idea I could apply for benefits, it was my MS nurse that old me, so I now get PIP and ESA. Good luck to you with whatever you decide, its hard, but you have to think about you.
I worked for HSBC when I was diagnosed. They were fantastically supportive, and had no problem taking any time off I needed. Health ended up where I could no longer work, mostly due to fatigue. But they kept me on the payroll, and didn’t work for about two and a half years. By that time, my health was much more steady. Fatigue wasn’t as bad as it was, and they found a role for me that was very flexible - I didn’t have to do set hours, just do my total hours for the week, which was 0.46 FTE, and I could also work from home. HR put me in touch with Access to Work, which is a government thing to support people with disabilities in their job. They paid for a taxi to and from work. The bank also paid most of the cost of a new wheelchair, which was amazing. I was also eligible for the disabled component of working tax credit, which made up for having to work reduced hours.
So speak to your HR department and ask them about how they can support you, and also ask them about Access to Work.
Wow Dan as always gives great advice. The only thing I can add is to take a few weeks sick leave and rest as much as you can. Is it possible for you to employ a cleaner and or gardener?
That was great for you Dan, but some of us aren’t so lucky, where I worked in a dental laboratory in admin they couldn’t have afford to keep me on, small business you see. However I di know about the free taxi thing, as my MS nurse told me that gov/council pay for it. I agree with Jan, get help where you can and do speak to someone where you work, good luck.
It would be worth considering: -applying for PIP -talking to HR about any reasonable adjustments. They might refer you to OH to see what they suggest -you might be able to look at ill health retirement (depending on the type of pension you pay into) Honestly, it depends on how your medical team would support you and any other OH/pension medical team would view things so hard for me to say.
Akos, it is good to think ahead and consider options and plans. Many people closely identify who they are by what they do for a living, so try to hang in there by making use of adaptation and adjustments. I was diagnosed in 1991 and was able to remain usefully employed until 2010. This sense of being useful was important to me. My employer was very supportive and my role within the company was significantly different from my original job. You should not let your job have such an impact on your health that things are much worse for you. As long as you are comfortable and not impacting health , family or colleagues, I would keep going, but when you do decide to stop employed work try to embrace it as a natural progression. All the very best Mick
Hi, I retired on ill health from the LA in 2000. My MS progressed very quickly and within 2/3 years I was no longer able to do my job. I received a good payout and small pension.
I claim PIP and did claim ESA until I got state pension.
You can claim PIP and work…it comes in 2 parts…1 for care and 1 for mobility.
Perhaps the mobility part would be right for you just now.
I also loved my job and didnt want to leave, but there came a time when I was falling daily and the fatigue was overwhelming.
When you get to a point where just getting put of bed, showering and dressing makes you need to lie down, then youll know its time to call it quits.
First of all, if a person has to get an MS dx, it is (I think) best to have certain things under your belt before it happens: having a well-established career and attendant benefts such as good pension cover being among them. Also, having had one’s children. You’ve done all that, so you’re well ahead of the game, which is great. If you’re in a secure life partnership, that’s the other biggie, and I hope you have that one too.
DOn’t be too quick to assume that your job can’t be reconfigured to suit your capabilities. I think the thing is to work with your bosses to address this as another work problem to solve, not a personal thing. You’re used to working with senior people to solve problems, this is just another one. This is the sort of thing you’re good at, I’ll bet: figure out what resources (yours) can realistically be deployed, what income you need, what what the company needs in terms of work deliverables, what other resources can be deployed or redeployed to fill the gaps,and then the job is to optimise, getting the best available balance. But that equation isn’t just yours to solve: your colleagues share that responsibility with you, and you might be surprised by how receptive they .are when you involve them. Please do not think this is just your problem to solve.
Of course, it would be wise to find out where you stand if your health breaks down to the extent that you can no long work, but that, if it happens at all, might be years and years away. Just remember that these things are rarely a matter of all-or-nothing, even if a full-on job can feel that way.
Thank you so much for all your replies, I have a lot to consider and think about I guess… need a good chat with husband and consider our options going into the future. I guess I just want to try to be prepared as best I can for whatever may come, I’d rather over prepare and not need to do something than be forced into making a decision on the spot, if that makes sense.
thank you again for all your advice and best wishes it is truly greatly appreciated
I can’t offer much advice, because I’m not in the UK, but I wound up changing jobs a few times, then shortening my hours, and I finally quit once I reached the point of calling off more than I was there. I wish now that I’d quit a few years earlier, because I think I pushed myself too hard and just made things worse.
Check into the requirements for getting financial help (we have a waiting period over here), and then you’ll have a better idea of how long to keep going.
You make a great point, without hindsight it is a tough call to know how long to push on and when is the right time to stop. Pushing on, may or may not be the best thing.
Hi Jean. I know how ridiculously blessed I was by the bank, and It’s rubbish that so many employers aren’t able to give the same support (or just don’t want to). I thought I’d share all that though, since Akos works for a bank, so hopefully they’ll be able to offer a similar level of support.