Oh Hell

When you stand back and look at the future, what do you see?

I see a future of gradual decline. I’m in a wheelchair and I have great problems with life’s basic functions.

What are the things which give us hope? What do we do to fight back?


This is an unusual post from you Steve…hope all is well with you.

I go from what I think is my acceptance of this crappy disease, to uncontrollable tears of fear and sadness. Fear of what is to come, what is in store. Almost two years since my relapse and almost immediate diagnosis, I went from being almost un affected in that May to using a crutch by September. Needing a wheelchair for any distance by the following May but still managing okay indoors, now I;m struggling to get around and can only shuffle, being unable to pick up my feet.

Sadness for the loss of the mentally strong, outgoing, capable woman I’ve said farewell to. I no longer drive, can no longer work in my huge garden, do my solo travel abroad adventures. I struggle to get dressed, to dry my hair, to open jars, to peel vegetables, to cut my meat…

What things give me hope? I’m not sure I even have any Steve. My husband does most things indoors now and is my registered carer. I try not to think of the future but on a bad day, it looks bleak.

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IMO you are an excellent writer Steve and your writing brings cheer to lots of people. I hope that you will always be able to do that whatever this viscious illness does to your body.


I can offer nothing but empathy - these are very much my “waking up in the middle of the night” thoughts.

Hope is a commodity in increasingly short supply.

Jo x

Hope… i gave up on hope a few yrs back…i just get thru each day best i can now, some days are worse than others,and thats my lot,i am tired now too tired to fight anymore.


It was a brief moment of frustration.

But if we want to, we have a right to just growl and snarl at the rubbish which is tipped out in front of us by that funless bin lorry of MS. Like the old tractor on the country lane, there is no room to pass so we have to drive in its wake of mud and cow pat salad. We sound the horn in anger but the enormous driver, with ears like cabbages waves a two fingered salute without turning round.

Best wishes.

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You had me worried for a moment.

What’s the recipe for today?



Love it. Living in a very rural area, I totally understand that, and the ms.

hear hear



your wit and eloquence are a source of joy. (one of the things I look forward too) We are all entitled to state the negatives and how they make us feel and whilst we all deal with this crap individually, you are not alone. Hope things feel a bit better soon.

I constantly have to shift the goalposts of hopes etc but usually find something to feel good about.


I know lad, I really do.

But what can we do but just muddle along, getting a laff here and there and going to bed early when we no longer want to stay up and fight, on any particular day.

I go to bed around 6 ish…sometimes earlier, rarely later.

Once in bed, I feel relief from being squashed up all day, checking my spc tube is draining. As my back hits the bed,as my hoist lowers me down, I sigh with relief and thoroughly enjoy those first few seconds .

Then I get a kind of feeling I find difficult to express. Maybe you and others here identify with it.

I feel I have ended that day`s struggle and no more is required of me…but no-one ever puts any demands on me anyway, so innit it daft to feel like that? And yet I do.

As for what the future may hold for me? Well I worry what Id do if my hubby pops his clogs before me. I know our 2 daughters worry about that possibility too. What the chuff are we going to do with mother if father goes first? theyll be asking them selves.

Well I do hope it wont come to that. Not that I`m in any hurry to go at all!

But even then, I find myself saying, If I am widowed, Ill get a car, one I can drive from my wheelie. Ill rent a flat near town....Ill do this…or Ill do that…stuff that my OH wont do.

The future will come, as sure as eggs is eggs! We dont want to know what`s gonna happen…we probably wont like it!


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Sometimes, just sometimes, the future surprises us with something really nice.

Perhaps that’s what keeps us going.

I’m going to check my premium bonds tomorrow.

Just in case.


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MS is a total b@stard.

There are times when you can feel OK, when you know you can handle whatever the next load of manure brings. And there are the other times. The times when you shout and yell at it / yourself / various body parts. The times when you just cry over the losses you have suffered and the indignities you have to live through. The times when all you want is to be 5 years old again and sat on your mother’s lap hearing her tell you it’ll be alright.

Hope doesn’t exactly live in my house unless it’s just the hope that tomorrow will in fact bring big fat prizes from Ernie.



I think we all feel like that at times mate,I’m probably the the worst for being positive but today I had 3 trips 3 saves and no falls pretty dam good for me my new personal best,I’m in a wheelchair most of the time as well but like others in are position we all get the odd good day and it makes you appreciate it stay positive Steve