Sunday, 25 November 2012

Oh sweet ignorance, where are you now?

Excuse me if I allow the stiff upper lip to drop for a moment.

Reality has smacked me upside the head. Today has been a hard hard day.

I went to visit a good friend of mine, we watched films and chatted, it wasn't until we decided to go to the shop below where he lives I realised how badly I was affected.

One flight of stairs and a 20meter walk each way.

I was shaking, exhausted, wheezing and fit to collapse. The look of unspoken concern from him was crushing.

Because the reality is, that although I've had relapsing remissing, getting better each time. I've never been this bad, or for this long.

And I am terrified that this, is marking the shift to 'Secondary Progressive' where remissions are fewer and further between if at all, and any improvement isn't back to 'normal', gradually getting worse.

Despite sitting in my car resting my head on the wheel after leaving, gathering my composure and weeping softly. I dried my tears and set off.

Driving aimlessly for around an hour and a half I knew I couldnt face going home to be with my thoughts.

So I arrived on the doorstep of another friend, one who has always been a listening ear over the last few years. As I told her what had happened, and being diagnosed the horror and worry on her face mirrored my own that I have been too proud to show.

We talked, discussed everything, looked at the positives, but in my mind all I could see, all I could feel was the settling dread, the reality of what I have and what is happening to me, and the all consuming fear, that this time, it wont go away.

So now I'm home once more, exhausted from climbing one flight of stairs to my flat, tears battling for freedom as I fight them back and force myself to be rational, to be practical.

The reality isn't that I 'may' end up in a chair. I need one now.

The exhaustion is debilitating.

With each person I tell it all becomes more real.

This isn't some awful nightmare I'm going to wake from.

I feel so lost tonight.

So hopeless.

And so very, very angry.

Why? Why has this happened to me? Why after all the trouble of the last few years did life see fit to smack me with this.

I've always believed that life won't hand you more than you're strong enough to cope with.

But I find myself questioning that.

Maybe life is merely pushing me to breaking point, where until you crack everything keeps piling up.

Why is my body failing me.

I should be in my prime.

And I'm falling apart.

Sweet Ignorance, sweet blessed unknowing, thinking I'd get better, I just needed more sleep, just needed to eat better, knowing it would be ok soon.

But its not.

Its never going to be ok.

At twenty seven years, six months and ten days, I am facing not only my own mortality, but that the best years of my health are behind me.


I am so scared.

So angry.

So upset.

So lonely.

I'd give anything for my partner to be here now, but life as a cruel twist has us hundreds of miles apart.

I'd do anything for a hug.

I don't blame him. He can't help the distance any more than I can.

But right now I can't see a light of hope. All that is waiting me is descent into disability.

I can barely walk. I can't stand enough to cook for myself, I can't cope with going shopping, and certainly not carrying it home.

I need a god damned carer.

Twenty seven, well educated, reasonably intelligent, and trapped in a body that is collapsing under me.

It's so unfair.

There was so much I wanted to do, so many hopes, dreams, plans.

And they're slipping through my fingers like sand.

And there is nothing I can do.

Nothing anyone can do.

But accept it.

I am terrified, I wont be able to.


- Cookie.


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