Community blog

Stories for people affected by MS, by people affected by MS.

MS is different for everyone - we hope this blog reflects this.

Latest entries

Mapping the way: a solution to losing possessions

Adam is a 51-year-old civil servant, diagnosed with MS 20 years ago. He now has secondary progressive MS, and uses a wheelchair.

It’s the small things that cause me the most frustration. Like going down the stairs on my bum, only to realise on the bottom step that I’ve left my glasses on the bedside table.

When will I get “good” at living with multiple sclerosis?

TrevisPractice, so goes the saying, makes perfect. Well, for better than a dozen years I’ve been “practising” this living with MS thing… and I don’t think I’m very good at it yet.

The Waiting Game

Barbara and her sonMy hospital has a wicked sense of humour. The MS clinic (Suite 16, honestly) is in the second furthest away room at the end of a very long corridor of clinics. I used to fume about this as I schlepped my way past 15 other clinics, muttering under my breath, ‘you wouldn’t want to have any mobility problems, eh?’

Labels and self confidence

AnneI’ve never really minded being called a dizzy blonde, although I should; labels tend to stick, and reputation is important, working as a freelancer. I have so many other labels that I do enjoy: poet, facilitator, creative writing tutor, artist, funny lady.

Control is just an illusion

Trevis Gleason speakingIs it just me or did most of us think we held life’s reigns firmly in our hands before we had a hard time holding anything without dropping it? I guess that was my one takeaway from my diagnosis back in 2001

My personal Paralympics legacy

Mary using a wheelchair on holidayAs the first anniversary of the London Paralympics approaches, I’ve been thinking about how, if at all, the Games have affected me personally. Looking at my wheelchair, I realise just how they have.

Unexpected changes: pets and MS

Chris on a trainHaving primary progressive MS is of course a life-changing experience. But my life with MS is not really that much worse than it was before: it's just very different in many ways. I get around differently, and do different things (or the same things differently).

Upsetting the balance

Being balanced is a challenge I never thought I'd face. Arrogance personified I suppose!

When I was younger, and involved in any sport that didn’t involve sitting over a chess board, balance and coordination were considered an absolute necessity.

Washing up and working on the tills is out

AnnApplying for jobs is a great way of facing up to what I can no longer do.

I can't carry plates - especially hot ones - so waitressing is out. I lose feeling and dexterity in my hands if I handle a lot of objects, so washing up and working on the tills is out too.

Come back rain, all is forgiven

"The hottest day of the year", "Another scorcher" and "Isn't it beautiful out?" - all statements to be heard echoing around Northern Ireland for the last few weeks.

Well. I'm sorry to be such a spoil sport, but I am about to go all Jack Dee on the next happy camper who says they wish it could be like this all the time.

Like many things that happen in my life, I am blaming my current bad humour on MS. Am I the only person who is beginning to hate the sun?

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