I was diagnosed with MS 6 years ago now and in terms of my cognition I was almost relieved as a few years before I suddenly felt “less sharp” and that stayed with me ever since. Nothing I could put my finger on but just felt a bit more spaced out. I got on with life and learned to live with it learning strategies to cover it and working harder and …if I’m honest beat myself up about my mistakes. After my diagnosis I got my cognition checked and came out with a really good result which puzzled me. 6 years later and I am becoming more and more frustrated at silly mistakes I know I am making, especially when “juggling” tasks which is a major factor in my work. I work with some very intelligent people who just struggle to understand when I haven’t remembered something or I haven’t done something and have been quite horrible at times. I just feel like I am lagging behind. I suggested to my manager a few months ago stepping down into a more admin type role and she dismissed the idea that she felt I didn’t need to do that. I have told her I am worried about my memory but she just compares it to the sort of things that she does. I am just feeling exhausted at how hard it is to even some close to keeping up with the rest of my team. Overall I feel I can still do the job but the pace is overwhelming at times and the pressure I put myself under at the thought of doing something wrong or forgetting something and what they will think of me is probably not helping either. I guess all I am looking for is some understanding and support…is that a reasonable adjustment nor will they just conclude I just “can’t do my job” especially with the good result in my last cognitive test. I feel if it repeat the test I will probably still perform well. I’ve always been good at those sort of things and do brain training games, suduko etc and it is in a quiet focussed environment. I am meeting with my boss soon and thinking of raising my concerns with her again.
Understand completely as with my cog fog - somedays we are not bad and then others it’s a bit of a mess - I would get on to your HR team (you are covered under disability rights law) and explain how you feel and if possible get a letter from your neuro explaining the same - good luck
I think you need to seize the initiative by thinking through exactly what the necessary ‘reasonable adjustments’ look like in practical terms and then asking for them formally. Whether that is the change of role or a reduction in hours, or whatever. Or even just a briefing for your work contacts that Newbie has MS and needs to be cut a bit of slack, although I doubt that would do much good in the heat of the fight in the kind of work environment you describe.
As for the cognition tests, do bear in mind that the informative comparator would have been yourself five years earlier, not some population age-matched average.
I am sorry that you are struggling. It was cognitive fatigue and total lack of oomph and mental grip that caused me to throw in the towel at work, so I do feel for you. All I can say from my own experience is, if you can help it, don’t hang on when you know that you are neither use nor ornament at work because that is a soul-destroying way to live. I wish I had gone sooner.
But all that’s for much further down the line I hope. In the meantime I hope you find a solution that gives you what you need for now.
Thanks to all who replied. I was speaking to another work colleague and she said that she had not noticed any change in me at all and that sometimes expectations are just too high. I really don’t know what to do. I am in the office on my own tomorrow with my manager…who I have known for some years as a friend too so think I’ll just make her aware of my fears that this may be something related to my condition and see what her thoughts are. I feel she has noticed things as a few months ago she challenged me and said that I didn’t seen myself that I sometimes seemed like I wasn’t “there” of course good old Covid hasn’t helped as I work pretty much on my own at home so have no idea of how my performance is comparable to others so maybe I am just being too hard on myself. Either way I don’t want to be worrying about it and just want to put the message out there that there may be an explanation why at times I am not on top of my game and it’s not through want or trying and that I as much as anyone is frustrated by it.
As far as you can, try to address this as a work resource issue which, in one narrow sense at least, is what it is. You would rather the issue did not exist and so, of course, would your manager, but exist it does and if anything is to to change you will both need to acknowledge that you lack some of the resources that have made you as effective as you used to be. It is in her interests and yours to make best use of your skills at work. That will require some creative thinking, but if you get it right, everyone benefits. Above all, remember that none of this is your fault.
Well i am now 12 months on and have been off with stress since June. Despite doing all I can my manager still feels my work is not up to stratch. There is nothing else i can suggest.
I am trying to take a step down and just do admin type work but that will mean losing all my qualifications i have gained …as CPD will be out of date. …as well as a £6k paycut, even with working an extra day. I have told myself my happiness is more important and have applied for a few jobs and have had some interviews and have some more coming up.
I am also trying to get to the bottom of whether how i feel is due to my MS or not. My MRI scans are all unchanged from previous years. I am also looking into whether it could be menopause.
I have been reading about PIRA (progression withouth relapse activity) and wonder if this is what could be happening. I am worried about mentioning it to my work as in the absence of any special measures and way forward they are likely to conclude that i can’t do my job and i worry how that will impact on any reference and any other job i go for. Any advice appreciated.
I have a Occupational Health appointment on Tuesday.
I am sorry to read this and, in particular, that the situation has been causing you such distress and probably doing you no good.
It might be that the time has come for some hard thinking about what your options are, what you want and also what they want and (potentially) what they might be prepared to pay for it.
From your perspective, so much depends on your personal circumstances, what your contract of employment says, what any occupational pension/insurance arrangement say about ill health, your own finances etc. You’ve been through all this a thousand times, I’m sure. Is ill-health retirement an option? Are your employers’ occupational health advisors the gatekeepers to that option (as they typically are). Is that what you want, would that suit you and, if so, are you going to ask them to recommend it? It is so hard to know what to suggest without knowing your circs and preferences.
From your employer’s perspective, it sounds as if they might be more than happy to call it quits, and if ill-health retirement as part of a formal scheme isn’t available for some reason, they might be prepared to pay you off with a settlement agreement that gives you some money and leaves you free to work for someone else doing the level of work that you are qualified to do.
I think it would be a good idea for you to consider buying some independent employment law advice before committing yourself to anything.
I am sorry that life is being so difficult.
I don’t feel ready to retire, I’m only in my 40’s. I feel I am still able to work to a good standard just not at the level I have been trying to. Also the problems is evidencing that it is due to my MS. As I say my MRI shows no change and there is also a query whether it could be menopause related. I went through menopause 17 years ago but haven’t been able to take HRT due to migraines but am about to try it again as last tried 10 years ago. I want to work and I even raised stepping down before with my manager when an admin position was available but she said she did not feel it was necessary. I just want to take a step back from the stress and pressure. I have to say my current role has been all encompassing for a long time and I just don’t want that anymore. Also the fact that since Covid I am homeworking and effectively working alone doesn’t help. I just wish I knew definitively if this is MS. If it is, as you say there may be something they can offer me. Feel like they just don’t understand and feel I’m being thick/lazy.
I think I’m in similar position as you: I’ve been off from work since January after heavy relapse, then mini relapse in August and now Covid-19 again this month --I’m waiting for surgery, which is a different issue at the moment too.
Yes being referred to Neuro-psychology helped answer the questions about MS fog, I was told all about executive dysfunction in MS.
No you’re not lazy or think, none of us MS-ers are; we just have a disability called multiple sclerosis.
Best regards,
JP
Dealing with what must have been a very premature menopause with no compensating help from HRT must have been a struggle in itself. You really have had a lot to cope with and I think you should congratulate yourself on keeping the work show on the road for as long as you have at the high level you have and for so long, with MS and its insidious effects folded into the mix (and I completely agree with your hunch that not everything bad shows on the scans). I do think we sometimes just have to step back for a minute and acknowledge how well we’ve done, don’t you? It’s not likely that any other perisher is going to do it - your boss, for instance. She’s looking at things from a different perspective.
I have often heard it said that having MS is like getting old, just a bit early. That was very much my experience at work. At work I had become an ineffectual and vague old person (aged 46), inclined to fret and dither. That wasn’t my fault and no one blamed me for it, but it was time to go.
Clearly you aren’t there yet, or even close to it, which is great. But some time well into the future you might find your version of the same, and it won’t be your fault either, just as your current difficulties are not your fault.
I hope very much that you resolve the job situation to a state that gives you what you need. Gooo luck with your meeting tomorrow.
Thank you Alison. I have tried to speak to my MS Nurse but not heard anything. She never replies to any messages I leave her. I will see what Occupational Health have to say. Ironically i cancelled my Union membership recently as i felt they weren’t doing anything but may reinstate it as i may need it.
Just spoke to Occupational Health and told them how I was exploring whether it was my MS and they seemed surprised and said that at the last appointment I was pleased that my MRI showed no change. I said that I am but I’ve also recently heard that you can still have progession and was trying to explore this with my MS nurse. She didnt seem that interested tbh. She almost seemed like she thought I was just trying to find another reason I could not return to work. I said that I am not saying that it is my MS just that I have this brain fog and we dont know if it is Stress, Menpause or MS so I am looking into all options and trying to keep an open mind.
Hi Newbie,
I am in a similar situation and will be speaking to my Occ Health team soon.
I have been working with my workplace, a large charity, for 6 months and it seems to be coming to the fore that expectations of me are not being met.
I put a lot of effort into work (overtime hours etc) but it’s clearly not good enough and without being dramatic, is a bit soul destroying.
I am really hoping my OH team can suggest some reasonable adjustments which will help. I’m in a fixed term contract with 6 more months and was hoping for the role to become permanent but am worried the 6m will come to an end and there is no obligation to keep me.
Anyway, you’re not alone. I thought I was (I haven’t used this forum in years) but I hope collectively we can bring awareness. Good luck!
That sounds a tough situation. It’s bad enough when in a permanent contract. I hope that you have a good discussion.
(BTW I completely understand - and remember from my own experience - the soul-destroying nature of it. It’s awful when you’re doing your best, but it isn’t enough.)
Hi all,
Vintagefan thanks so much for reaching out. As you say its good to not feel alone. I felt so helpless and stupid for a long time and its not dramatic to say it is soul destroying. I felt like i just didnt know who I was anymore. I wish I knew what to suggest to help. Always here to listen if you need anything.
I have now started a new job. Sadly only a 1 year contract. All ok at the moment and my co workers seem lovely. They seem to have some big ideas for me and I only hope I can live up to their expectations. Not sure if it is THE job but I do know that even with the benefit of hindsight i can not think of one positive about my last job other than the pay. So thay tells me i made the right choice to go. Actually being in an officeand around people I do feel more alert and alive. I have started a very low dose hrt so not sure if that is also playing a factor too.