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Don't know what to do about work

DOn’t know if anyone can advise me or dhare your experiences. I have been off work this week due to an infection - this made me feel poorly (ie like anyone else would feel) but additionally it knocked me for six in terms of MS. I ahve been getting progressively slower and wobblier over the last six months - I have not put a name on the condition (except to Ocupational Health who have known since Dx) but it is plain to see there is a problem. I have a seniot job and have just kept going - the only concession I have asked for is shortened hours whilst my eyes got sorted out as I cannot drive in the dark.

I am due back at work on Monday but honestly do notknow if I can face it - both emotionally and physically. I have a long drive to work and walking into and around the office scares me - I am shuffling at the moment and relying on two sticks. I just do not know if I can do it. I know I am depressed as well - just keep going into meltdown and weeping everywhere. Not sleepong either - which doesn’t help my legs much.

How do you know when you have gone past the point of it being “difficult” - I can do difficult and have been doing that for months. When do you know you have reached the point you can be off sick legitimately and indeed should be?

I know I have to declare MS openly and have a plan in place to do that by the way.

Before you do anything, contact and talk to Access to Work

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

They can really help e.g. pay for taxis to and from work

Good Luck!

Anonymous, I think I can understand the position you are in at the moment. Would not mind to share experiences with you and help you where I can if only you would tell us about your personal circumstances… When were you diagnosed with what type of MS (you seem to have a progressive form, SP?), what’s your age, sex, kind of job, marital status, children?

I and most probably a lot of other MSers would not mind helping you, but it would be useful to know a bit more just to make our comments as effective as possible. Think about it.

Take care, it can be a cruel world when losing your confidence and one does no longer have the energy/ ability to stay upright, I speak out of experience!

Sounds to me that, right at this moment, you have gone beyond difficult.

Depression, MS exacerbation following a virus and sleep deprivation are all perfectly reasonable explanations for an extended sick note. Going back when you are emotionally and physically weak will do no one any favours: yourself and your colleagues, never mind the company.

Please come clean. Please take longer to feel better before venturing back. Please ask your GP for help. Please also contact Access to Work.

I know it’s an oldie, but it still rings true: no one ever thinks “wish I had spent more time in the office” on their deathbed! Life is about living. It sounds like you need to get a bit more balance in your life.

Karen x

PS Who used to be a senior manager in a blue chip company and doesn’t miss it even for a second now she’s ill health retired!!!

Thanks for taking the time to reply and so soon. In response to Jos actually officialy I have RRMS,diagnosed a few years ago - though I have indeed had steady and marked deterioration over last year. I have been in touch with Access to Work and will be applying to them for some support - it’s just the immediate problem deciding what to do right now. I know you are all talking common sense - thanks for your thoughts.

Hi Anonymous
How frightening this must be for you.
Right now I would contact your GP and also Occupational Health (on Monday) and get them both to declare you unfit for work and ensure you take plenty of rest to try and recover. Is there any reason you havent told work what you suffer with. DO you think they would have a problem with it/discriminate against you?

Good Luck x

It’s good to hear you’ve already contacted Access to Work.

Karen (rizzo) is also right, see your GP and get signed off for a wee while longer. You might find counselling would also help you through this difficult patch.

One thing I have learnt about MS is that nothing stays the same, so things may well be very different in a few weeks/months time.

Take care

hi anon

in my opinion you already know what you should do but you’re afraid of doing it.

thats exactly how i felt and its been very difficult but i think im getting there now, i doubted if i could face it both emotionally and physically and i knew it was a life changing decision and once i made my choice i knew i had to live with it.

but

just because you’re on sick leave doesnt have to mean that you never go back, but do take some more time out and be nice to yourself, you are ill, you do actually deserve to look after you. i could say more but i dont really want to go into too much detail on here. if you want to message me though i can offer you my story.

hope you make the best decision for you.

mandy xxx

The reason I have not told work (other than Occ Health) is I did not want any preconceptions or misconceptions about MS to affect people’s attitudes to me, be they peers, subordinates or boss. People’s perceptions of what MS is range from it “makes you a bit more tired some of the time” all the way through to the worst sort of prognosis. Anyway I wanted (still want) to be judged for who I am and what I do rather than what I have. My neighbours know and whereas they greet each other with a cheery “How are you” - to me they say “How ARE you” in a deep and meaningful tone and then proceed to want to talk to me only about MS (when it is the last thing I want to talk about). I didn’t want work to be the same - it has been the one environment where I wanted to function as a normal person and try to forget I have MS… And whilst work cannot openly discrimate against me, I am clear it would make a difference. It must be obvious to everyone at my office I have a long term condition - however I bet they all think I have arthritis as everyone feels the need to comment on the cold weather to me - more proof that you become measured by the diagnosis and popular misconceptions come to the surface!

."… And whilst work cannot openly discrimate against me, I am clear it would make a difference."

i have to agree with this, i know from experience that it does happen, companies are just very careful to give it a completely different label…

cynical, yes, just a tad…

Hello friend, I was at the place you are now back in 1999.

I was having many of the usual MS like symptoms…falling all over the place, fell into the glass door at work, having excrutiating spasms, trying to look in control and supervising staff under me, when inside I was falling apart! I was so tired I had a weird experience of seeing a road closed sign as I neared work. Later I was told that was my sub-conscience trying to stop me going further!

I went to see my GP practice nurse for something unrelated. She took one look at me and said she thought I looked worn out.

Well it all came out, how scared I was of possibly having an incurable illness, how my good friend and manager had turned against me because I wasn`t the workhorse I used to be. Just everything!

She urged me to take a weeks sick leave.......I found it hard to admit I just wasnt the in control person I was previously.

I did go sick…and never went back.

you must take care for yourself and if youre not fit for work (and it does sound like youre not) then go sick.

You ask about being on the sick legititmately…sounds to me and your other respondents, as if you are at that point now.

Good luck.

luv Pollx

Hiya. I returned to work from a 6/7 week absence upwards the end of last year. I had back to back infections due to starting Rebif a few months ago. My immune system was fluffed. I have no serious problems with mobility or eyes as you describe. I spoke to my doctor, explained I needed to get back to normal as soon as possible for my own sanity more than anything. He said what about I write you a note for three hours a day three days per week. The rest of the time was taken from my sick pay so I still got my normal salary. I did this for four weeks. Then I did five hours a day 3 days per week for two weeks. I’m due to start my normal hours next week. But they have said I can come in at 9.30 and only have half an hour for lunch. When I first started on the phased return I didn’t really feel well enough to be there but knew what my final goal was. I don’t have any children and am very lucky to have a rock of a partner. If I Feel too tired to cook or clean, he does it. Obviously if you have other commitments as well as work this may not be suitable for you. I think it depends on your end goal. I.e. Are you in a position to stop work through I’ll health retirement or resignation? I also have requested a downgrade of two places for health reasons. Work are only taking 5% off my salary over a three yr period as it’s due to Ill health. I know I’m very lucky with my employer. But if you work for a big company too they do ‘have’ to be seen to being supportive. My favourite saying is: ‘you don’t ask you don’t get’… You shouldn’t feel guilty for being poorly, good luck. Suz xx