My story

Memories of 10 years ago and the reasons why

Just heard a section of this song on the radio and it reminded me of laying on my bed on a sunny summers afternoon when I should have been busy during harvest. The lyrics seemed to ring true with me, I’ll explain.
It started with me waking up and finding I couldn’t see with my left eye, a visit to the hospital, various tests, with various diagnosis looked at and then back home feeling sorry for myself. Then a few hours go by and a phone call from the hospital telling me they think it is Multiple Sclerosis but would need an MRI scan to be certain. Now I didn’t really know what MS was so a lot of searching the web, I know too much about it now!
MRI scan booked and laying in the scanner I could see people speaking behind the glass but I couldn’t hear what they were saying, diagnosis confirmed and steroids prescribed. A few days and I was getting my own private firework display in my brain caused by the nerves in the brain short circuiting because of the damage to the myelin sheath, caused by the MS, when I was sleeping, it was a nightmare that I couldn’t escape from. I was in my own world of darkness with the odd nerves colliding in my brain which send bright flashes around in there. Then followed a few weeks of, basically, existing with bouts of pain around the eye socket and trying to cope with it, after all the hospital can cure it I was hoping. The vision it my blind eye was coming back thanks to the steroids but it was in black and white. Now that’s a weird thing to come to terms with, one eye in colour the other in black and white. At least the colour has returned a bit, it’s a washed out colour where reds look orange etc.
I’ve moved on a few years now and have come to terms with the fact I’ll never get any better know just hope I don’t get worse.
I learned a few things since I got MS, you know how good your family is, you know who your friends are and you never really appreciate things until you loose them.
So this song brings back memories that are not nice but it seems to fit in perfectly to my time of being diagnosed and coming through the other end, well this far at least.

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BillyWhizz (I remember the comic he was in…)

Your post resonated with me. I used to think I was a bit of a rocker and hated rap and such like. However with time on my hands I found that this made me smile if played loudly enough. C+C Music Factory - Things That Make You Go Hmmmm.... (Video Version) ft. Freedom Williams - YouTube

I was diagnosed in 1991 after some very terrifying stuff. On the plus side I have learned a bit about myself and the world thanks to my MS. I have learned to seize the moment , and enjoy stuff while I can. I even learned to listen to various types of music, (if you wish to try different stuff you could do worse than listen to digital BBC 6 music.

I hope you can stay positive and enjoy the good bits. Mick

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There was a stand-up years ago (…can’t remember who it was) who used ‘the sound of silence’ to back his own lyrics “Hello darkness my old friend …I’ve bumped into this wall again”

Hope things are improving for you, BillyWhizz, and continue to improve ?!

Best wishes,


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hey billy

we have all had that piece of news about our health, that we neither wanted or expected.

BUT we have survived it.

start to think of yourself as a survivor!

i am a survivor of ms, not a victim of ms.

well that’s the label i choose for myself.

take care billy

carole x


hi billywhizz

your post and that song really spoke to me too. it reminded me of the feeling of despair when first dxd, the fear for the future and lamenting the past. carole’s advice above is excellent and we should all remember this, but allow yourself the occasional bit of sadness as you’re human; you’ve lost certain skills etc due to ‘more shit’ (© richard pryor) but there’s a lot you can still do, especially if you try to be optimistic and think more survivor than victim.

i had a week of feeling like a victim, lamenting my past achievements and sorrow for no longer being able to do what i could do, but as my wife said (in a tirade of abuse, telling me to get a grip), i need to remember and celebrate the good things in life. she apologised later, but i kind of needed that shake up.

take care, and dont feel bad for occasionally feeling bad, fluffyollie

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a feeling of loss or terror is not an unreasonable response. I totally agree that we all need some occasional “sorry for myself” time, but not too much. Your wifes’ response is also reasonable. When I find myself getting low I tend to let my wife know directly which buys a bit of lattitude as she wont just think I am being a miserable git.

Good luck one and all