Hi everyone,

It’s probably best if you remain anonymous for this one if you respond. Call me “H” for now

I was diagnosed with MS in 2007 and not worked since then; I’ve been living off the good nature off family members (Mum & Dad mainly) and DLA soon to be PIP (that was a nightmare test). My parents should have retired years ago and they are just about to by the end of the year, and also moving house where I also live, it’s been really not fair on them. I’m also going through a relapse right now I’m typing this with one eye closed on word on what I call my bad eye, keep hitting the wrong keys.

My symptoms include extremely sore foot walking is difficult, need to sit down or lean against something and let my foot float in mid-air, also have a constant extreme headache and eye pain with extreme photophobia and the odd bit of numbness the comes and goes here and there. Also have a very sore left hand and fatigue. My eyesight has been hit 4 times in the left and now 2 times on the right. I’m sure there are people worse than me but due to this relapse just now I’m feeling a bit uneasy my eyesight is not good. Waiting on the results of the MRI I had last week I just had one in April.

  • So I was just wondering what type of work you do, what symptoms do you have, how do you cope?
  • Is your work ok with having MS, do they know?
  • I don’t think I would tell anyone when I get a job.
  • Don’t mean to intrude but how much money to you earn?
  • (Don’t have to answer that one) a job is a job, a means to an end and that’s it.

It has taken me 10 years to come up 3 units short on my degree, with that length of time it gets to a point you just can’t be bothered with the stress of it but I will go back after Christmas and get that magical word degree or as I call it the fake golden goose.

I’ll be 42 at the turn of the year and I’ve got no idea what to do, my mind is blank at the moment my mine is on the results of the MRI. Anyway that was a bit of a rant sorry about that if you do reply please stay anonymous if you like. My head is all over the place at the moment not sleeping well at all.

Thanks for reading and take care.


hello H

sorry that ms is being cow with you.

i was an advisory teacher working for surestart. i would have children referred to our service who had a disability. we ran a portage service which involved a portage worker going into the home. she (ours were all females) would engage the baby in some sort of play whilst reassuring the parents.

surestart was stopped due to a change of government. myself and the other advisory teachers were kept on by the education authority. all was good until ms came along. the amount of stress from my job made me quite ill.

i was off work sick for 6 months on full pay, then 6 months on half pay. after this occupatiional health became involved and it was suggested that i could take early retirement on medical grounds.

10 years have passed and my pension covers my bills but no more than that. i was on excellent pay but because i only got into teaching late i don’t have the full pension.

enough about me. now for your situation: with regard to telling your employer about your ms, it is a good idea to do so because they need to make reasonable adjustments to enable you to stay in work.

you don’t need to mention it at interview though. once you have the job, you can tell them then.

you can request help from Access to Work who will work with your employer to help them make the reasonable adjustments required by the DDA.

you need to take medical advice re your symptoms, keeping all relevant paperwork together (letters from specialists).

do finish your degree, pacing yourself to avoid stress. a tutor should have the role of supporting students.

claim for PIP getting help from welfare rights, CAB or similar. it is what you and your parents have been paying into all your working lives.

get as much help as possible with your eyesight. consider getting a wheelchair for your mobility problems.

look after your mental health too. talk to your gp about how it is all affecting you. don’t reject the idea of an anti depressant or sleeping pill.

you sound thoroughly disempowered. take charge of the things you CAN do.

make sure that your parents know how much you appreciate what they do/have done for you.

it can be seen as an exciting, although scary, time when you are about to move on. many people have done the same and survived.

take charge and take care.

carole (i don’t feel the need to go anonymous) good luck, onwards and upwards.

There are charities that help people wanting to get back to work after a long time away on account of illness or caring commitments or whatever. It might be worth a Google to see what might be available to help you.

Good luck.