Forum

First time on forum

Hello everybody,

I have had MS for ten years now and thought it would now be a good time to join in on the forums from time to time as it’s been hard for me to come to terms with my MS, I am still working and battle through my symptoms daily and only told work five years ago as i feared discrimination. I am office based and it’s difficult doing nine hours a day in a commercial office.

All the best Sean

Hi Sean

I was diagnosed with MS 3 years ago. Like you I am having a hard time. I am scared out of my mind. Medicines are very scary to me. One can effect your liver, one can effect your heart, A year before diagnosed I Quit smoking after 32 years, then I am suppose to avoid certain foods, no beer, what’s the sense… I keep going and push thru because of my grandchildren, I didn’t ask for this so I thought the right forum would hep.

I hope you can find your way thru this

Roxanne

Hi Sean,

you will find this site invaluable, as someone who is only recently diagnosed I know that I do!

I think most people would struggle to work a nine hr day let alone if you have MS symptoms, Is there no chance of reducing your hrs? By law your employer has to make reasonable adjustments to help you. If you are a member of the union they could help you with this. If not the info should be available on Gov.uk. You need to take care of yourself as your employers are obviously not falling over themselves to help you- they have known that you have MS for 5 yrs and they haven’t come to you asking how they can help!

Take Care.

i’ve had MS since the mid 90’s and for the first 10 years didn’t do much about reaching out to the wider community. Then I moved house and got worse. Joi ned the MS Society and the local branch. Theres a magazine, which useful articles.

In 2012 and 2014 and 2016 went to MS Life…heck its free! and an excuse for a week end away! Never seen so many people of all ages and they ALL have MS or care for someone with MS. Makes you think, wowser, I never knew…

Hi Sean

Access to Work may help, worth a try.

the fear of discrimination is awful.

carole x

Thanks for all your replies, didn’t think i would get a response. Work have said is their anything I. Need but reducing my hours would mean a reduced salary and i am the main earner. So i soldier on, left the house at 7am and just got home. Hopefully i can limp on until 55 and draw my pension.

Thanks Roxannt

Sean,

Fear of discrimination is yet another stress you could do without. In my experience, the fear of the unknown was worse than the actual outcome. Colleagues and employers are not all too bad, quite often they will support you in trying to remain productive. The other thing I found was that when my income dropped significantly, it was not as bad as I thought. Clearly I do not know your circumstances, so please forgive me if i am talking rubbish.

Good luck

Mick

Sean - welcome to the board. As you say reducing your hours is not a good idea as it will affect your pension. However there may be other ways your employer could help. Could you work from home part of the time - do they give you time off for hospital appointments - can you get help with travel to and from work?

I’ve moved where I sit in the office so now I sit next to a window, luckily that seat was vacant, not sure how easy it would have been otherwise. You wouldn’t believe what a difference this has made to me. It means I can cool down by opening the window it really helps me as I seem to overheat and then my vision goes blurry again. Not sure of your situation, but seriously even little things can make a big difference.