I’ve posted this here as well as on the newly diagnosed and undiagnosed forum in the hope of advice & support from anyone who has been through this stage!
I’ve eventually managed to persuade my GP to sign my ‘Fit for Work’ paper on a phased return basis - I’m going back next week!!
Now I’ve got my own way I’m feeling rather scared & anxious!!
I’ve already been dealing with disability for 16 years after spinal injuries due to an RTA but have never really had to ask for ‘official’ support or concessions. I’ve always worked flexibly and have a parking space etc.
But the new more neurological symptoms that have been developing & getting progressively worse over the last few years - with at least 3 clear ‘relapses’ are a diifferent kettle of fish!
I’ve been off 3 months this time and was hoping (ha!!) that I would have had all the tests, the diagnoses and the treatment all sorted by now!!
Work is arranging a meeting and risk assessment when I go back and my GP will be sending a ‘report’ when they get chance - but I don’t know what to say/ask for etc because:
I’m undiagnosed as yet
The symptoms are so unpredictable!
I’m a lot better than I was a few weeks ago - I couldn’t have worked at all - but I know I’m still ‘ill’. I’ve been pretty well housebound for the last 3 months - last weekend was a test as I went camping for 2 days & have been useless for the 3 days following it!!!
At the moment the worst things are the fatigue, stiffness & heat intolerance/perception
I’m going to ask if I can work from home as much as possible. I don’t want to reduce my hours or my workload!
Any advice on:
How to explain things - do I explain everything as if I do have MS? My symptoms/history are very very 'MSlike". Then I can give them clearer information etc (they know that MS is a strong possibility)
What should I ask for???
Managing my symptoms? - I’ve still not been given any meds because of my enlarged pituitary gland - the docs don’t want to do the wrong thing I suppose
Anyone know of any good advice pages etc on ‘back to work’ in these situations - particularly for limbolanders??
Thanks MS43 - working from home would be an ideal solution at the moment!
Tabitha - we don’t have an OH as such - the Health & Safety Manager I think covers that role lol
… and yes being undiagnosed is really difficult! What do I say to my colleagues for example? & if it turns out not to be MS after all I’d feel like a right pleb!!
Meds-wise - they won’t give me anything much at the moment as I have more than one thing going on - I’ve got an enlarged Pituitary Gland that’s pressing on the surrounding brain area and complicating things - once they know the cause of that I guess/hope they’ll start treatment for both - I’m seeing the endocrinologist next week about that x
Hi, I was never off sick and went to work right through my diagnosis and said nothing about ms, other than to hr and my manager. I just explained my stiffness and difficulty with walking (although it was much better than than it is now) with simpl things like, “I’m just a bit stiff”, “my legs a bit sore”. I wish I had gone in and told it as it was to my colleagues but I hadn’t worked there long and didn’t know how people would react and I was only 25. I wish I had just told people there and then, it would have made things easier. So if I was you I would just go in and say that you have been poorly, it is probably ms and will become clear in time. Just tell a few people you know and like, they can probably spread on the grapevine. I never explain now to a new employee because I assume it will spread on the grapevine. If you don’t want to talk about it at work you could say something like "I’m doing fine so let’s not dwell on it for now and get on with things. Good luck anyway. Cheryl:-)
I’ve just sent an email to my immediate colleagues explaining the situation I’m in - most of them are really lovely so I know they’ll be supportive!
Those who are selfish enough not to have some compassion can basically shove off!!! You are right about the grapevine too - the rest of the world can find out that way!
hey bun…just wanted to say good luck for your return to work… as others say pace yourself…get all the help avail and working from home would be ideal…it’s hard without a dx but they still havea duty of care regardless of what’s causing your probs…but hopefully you’ll get some help re meds and a dx in time…until then they need to accom you as much as poss. let’s know how you get on… em x
hey bun…just wanted to say good luck for your return to work… as others say pace yourself…get all the help avail and working from home would be ideal…it’s hard without a dx but they still havea duty of care regardless of what’s causing your probs…but hopefully you’ll get some help re meds and a dx in time…until then they need to accom you as much as poss. let’s know how you get on… em x
hey bun…just wanted to say good luck for your return to work… as others say pace yourself…get all the help avail and working from home would be ideal…it’s hard without a dx but they still havea duty of care regardless of what’s causing your probs…but hopefully you’ll get some help re meds and a dx in time…until then they need to accom you as much as poss. let’s know how you get on… em x
Hi, just want to say good luck and I am sure you will be fine. There will always be one who may make a uncalled for comment but just ignore you put yourself first and take care. Love Karen x
I found it difficult during the diagnosis stage not teliing people what was suspected.
I had numerous hospital appointments in a short space of time and my GP origionally thought I had a swollen tendon (if only!!!), so people would comment on how bad it was that the hospital hadn’t sorted my hand out yet. In fact, the hosp were great.
My fatigue and stress and pain were getting me down and I didn’t look great.
Once diagnosed the managers and close colleagues were told (could not bring myself to get the words out at first, without crying).
The Grapevine helped and now I tell anyone who asks, its so much easier and people are so understanding, even if they don’t understand Neurology- which most don’t. You could ask your Manager to do this for you. Mine did and gave everyone a handout from NHS Choices.
I would suggest you explain you are having extensive tests for a Neurological condition, possibly MS. Explain briefly how it affects you and how they can help.
I also didnt want people to think I was abusing sick time and have a genuine illness, that I have no control over.
I am sure you will be pleasantly surprised at the kindess you will recieve.
Lots of luck, it will take a while to get in the swing of things but nice to get back into normality.
You have coped before with managing a life-changing injury, so you have lots of experience to draw on in terms of dealing with that non-negotiable gap between the way things are and they way you want them to be. You might find you need it! Sure, you would like to be able to get back to work with the same hours and the same workload. If that works for you, then great. But you might find that you need to manage your expectations downwards a wee bit. Neuro problems are not terribly amenable to mind-over-matter, alas. So my suggestion would be to take it gently, and try not to be too disappointed if you have to throttle back a bit on the amount of sustained energy you can expect to bring to work.
Hiya, what I did at the beginning of looking at alterations,and having to have risk assessments for everything, was to look at my job role in detail (it took ages) and highlight each area I may have problems with and how it could be made safer.
That included how each task could be made safer if balance was in issue,brain farts, sight etc…as you can imagine it was a huge document.
With management it was tweaked and then reviewed on a weekly basis.
As I’m sure you all appreciate it was the unpredictability that became an issue,as when I was well I still had to be carried by my staff,in case something happened.
You know what you work entails and how you think your symptoms will affect it.I think its a help to employers to go with solutions so they see the condition as needing to be worked round but that it doesnt mean you cant do it anymore.
I ended up being off work for 9 months while I was being diagnosed and getting started on Tysabri, which thankfully stabilised things.
BTW, If you get a diagnosis of MS then you’re covered by the Disability Discrimination Act - lots of other medical conditions would be covered too. It’s important as it provides some legal protection against bad employers.
My advice is to be cautious with working hours when you first go back - it’s difficult to know how much you can handle on a regular basis. Once you get back to work, people forget very quickly that you may not be capable of doing everything you used to do and you may get overwhelmed. Maybe start off for a couple of weeks at a level you feel confident about, then increase your hours if you’re handling that ok. If there are smallish things that would help - like having a desk fan to keep you cool, or sitting close to the loos - then ask if they can be provided.
The MS trust have a booklet on MS and work which is really helpful and has lots of MS’ers tips.
I’ve now been back at work for three years - working around 25 hours per week but that can be flexed a bit around my health and medical appointments. I’m lucky to be able to work from home if I need to so relapses don’t always mean I have to be signed off sick.
