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??
I’ve no experience of this. Even though I’m undiagnosed I’ve managed to keep working and I’m lucky in that I work in a hospital and departmetn where they would understand the implications of having something neurological or an undiagnosed condition. The girl who was doing my job before went undiagnosed for 7 years so they’ve been through it.
So I have to appologise and say I can’t offer a huge amount of advice. In my current situation I have an agreement with my manager that I try and let her know if I’m struggling and if I’m having a particularly bad time to try and leave early where it is feesible for me. They’re much more keen on me staying at work and if leaving slightly earlier when I have no patients or nothing to do helps me keep working then they’re keen to do that.
Just really wanted to wish you the best of luck. I know it’s a brave decision to go back to work when you’ve been at home for so many months and you are going to have to take it easy but really is great you’re trying toget back on your feet. Let us know how you get on. Wishing you the best of luck.
Ellie - ditto! I really want to get back to work - I’ve been nagging & nagging for ages but now it’s here I’m panicking a bit and just hoping I’ll cope!
My GP is going to send a report on where I am diagnosis wise - my symptoms & how they affect me plus recommending flexible working and being allowed time for hospital appointments etc. She basically said that if I insist on going back to treat it as MS even though it’s just a ‘probable’ at the moment xxjenxx
Jen were do you work I will pop in and make you laugh and proberly you will blush and ban me from ever speaking to you again.LOL.
It depends on what your job is,asses things like chairs,stairs,is there a lift,do you need a back rest,cushions,would you need at some point to walk around to eleviate symptoms,do you get swelling and may need to put your feet up.Keep the explination simple for them,if they need to know anymore tell them Google is there best friend.
If like me you slur your words I make a joke of it,say if I slur my words and you didnt understand me please ask me to repeat what I was trying to say.Make them aware of the symptoms and what signs they could watch out for and how they can help you.
Your employer may also have to asses the situation for insurance purposes.You also need to find out your rights on going back to work.
When I goes to Ammanford I pop in to see a friend at work and how on earth three hours pass by so quickly I do not know,maybe its all the laughing we do,she enjoys her job when I am there.
Best not pop in they may think WHAT THE BEEP is that,its tattooed and got shiney bits in her face,LOL…
Charlie I work in a faculty of art, design & media! Believe me there is nothing we don’t see on a daily basis that would make anyone say 'what the bleep is that!"
Now it would be a different story if you turned up in a twinset with court shoes - you might be noticed then!!! lolol xxx
HAHAHAHAHAHA No thanks I done all the lady like stuff,makeup on every day,matching pink shoes,pink belt,pink bag,pink watch and so on…Now I am just me,metal band T-shirts n hoodies,tatts etc…
There used to be a time when I would not go to the corner shop without makeup on,now hey look peeps my hair aint brushed and I is all saggy LOL.
Id rather be me like I am now than be all smartly dressed and fit into the in crowd,fake,Id rather be me and be excepted as me.And I am excepted as me.x
So pleased you have the opportunity to go back to work .
I was in a similar situation a couple of years ago. Before going back, I had to see the Occupational Health doc at my workplace, and he said I should only go back on a phased return, which I did.
He would only let me do 2 days a week to start with, then after a month, do 3 days etc etc. I never did get up to full time, but just got to 4 days. Actually, after a while I had to reduce to 3 days, then 2 days again, as I found the work, plus the travelling all too much.
My advice would be not to set your ‘bar’ too high to begin with - you may find your body is not able to cope with what your mind wants to do. Best to start slowly and build up gradually, rather than jump in doing all your previous workload.
Even if you do work from home, be careful. You may find that actually you will need to reduce both your hours and your workload, even at home!
You’ve been through a lot Jen, so don’t overdo things and go back downhill with your health again - the road back up would be hard .
who knows what the future holds eh! I’m scared I suppose because of the ‘unknown’! It’s not like I’ve broken my leg - been off 3 months healing & now it’s back to the grindstone all fixed and as good as before is it!
This illness is so unpredictable - I’m intending to pace myself as much as I can - I’ll give it my best shot & hopefully I’ll be able to cope x If I find it too much I’ll reduce my hours & workload x
If not - it’s a case of sell the house & downsize to something we can afford to run whether I work or not!
Sometimes I think that would be the best thing to do in any case - take the pressure right off!!! xxxjenxxx
Hi The MS Society has some excellent resources see below-you can find it in the shop. You can download and print the PDF or your employer could. It will give a starting point and provide them with more info. I would not get them to google as they will find advice from the USA and as they can be more proactive may “frighten” your already helpful and understanding employer. Hope it helps. Category: 07. Employment, benefits, finances and employment Mike
can’t add much either, just really hope you get on ok. do pace yourself though! I’ve been off for three months and I am desperate to get back to work. just very scared my job has huge responsibilities and my boss has said she does not want me back unless I’m 100% ??? not sure when that will be! and I work in the NHS!!! I will look up the suggested reading as would like to go back for couple of days at least. good luck next week xxx
Ladies who work for the NHS. It’s very difficult getting back to work and I understand managers wanting you to be a 100% well. Unfortunately with neurological conditions there’s a chance you may never get to being that 100% well and even if you do you might not stay there. Saying that it’s not a negative thing getting time off especially when you’re trying to get your head round whats happening to your body- there are some managers that may be quiet the opposite.
The wisest thing when you feel you are well enough to cope with the demands of your job is to see your GP and discuss a phased return. Speak with occupational health at your work too as they can support whether that be adjusting your working environment (lighting, desk position, risers etc). Putting more requent breaks or having a reduced list if you’re clinical.
I’m clinical and there are days where I do struggle. But I’ve always felt that as long as I am able to see each patient and treat them or help them like I would a member of my own family then I’m fit to continue. The point at which I feel I’m unable to give my patients the care they need I would certainly take time off.
Continuing or going back to work - is avery personal decision though. Only you know if you feel that it’s the right decision for you.
Hi all I was in a position prior to diagnosis that I was between contracts. I am an electrical engineer and due to tremors and the inability to work at height, could be 300 ft +, I will not be doing this for the foreseeable future, my safety could be at risk as well as the contract holder being put at risk. I have contacted all my major contractors and they have been supportive and offered their help and they have offered positions in tech support/training when I feel better, with hours to suit. Having an understanding manager helps, but you need to look at your capabilities and limitations and see what works for you. Remember it is what is best for you. Mike