A piece about living with chronic illness. In this case ME. I'm too close so can't really see if it's any good? I'll let you decide.

Comments appreciated.

 Have you ever had a day you wish you could live all over again? I don't believe in having regrets. I just learn my little lesson, and move on. In fact in the worst of times, the lessons are just likely to be all the more valuable. However if there was one day I could change, it would be that day in December, four years ago. Had I known, I don't think I would have stepped into that white van.

Don't worry it's not what you think. The van I refer to belonged to the blood donor centre in Glasgow. A friend and I had arranged for it to come to the school for a 'Give Blood drive' as there was a huge shortage that Christmas.

It arrived at 9.30am, and my day was spent scurrying around the corridors, up and down countless flight of stairs, posting donation times, finding those who had forgotten to show up or had last minute jitters, sitting with those who had fainted and taking photo's for the school newspaper.

By the end of the day I was exhausted, but the nurses allowed me to give anyway, as I was a late teen in the optimum of health. I lay on the bed for what felt like an eternity (it took 25 minutes to get one pint of blood from me, I was the longest of the day) and after a little more ant like activity I went home, went to work, and was crashed out in bed by 11pm.

Waking up the next morning it was as though the rug had been pulled out from under me.

My life turned upside down.

Had I known what nightmares lay ahead, I'm not sure I could have even gotten up. I'm not sure I would have put it all to the back of my mind and carried on in the stoic state of denial I became so accustomed. That day I woke up was the day I died, but kept on living.

An experience I would come to call, 'Living death'.

'I'm up going down goinup stup, the stairs….' Putting my hand to my head and closing my eyes I tried to clear blockage that was causing another attack of the gobbildegooks.

My Mum and Dad chuckled. I couldn't help but smile too.

Not being able to find the words, i less than artistically signed what I meant (I was going up the stairs, clearly) and after a run in with the living room door frame (the blockage also causes temporary blindness) headed to bed for my mid afternoon nap.
 
I was home again after a long struggle away at University. I had worn myself into a state that was so impressive; I had actually gone back in time. I was a child again.
 
I was taking regular naps, learning to speak and walk, and needing even the simplest of tasks done for me. My Mum became a strange double breed of my best friend, and the woman I blew raspberries at in my pram 21 years ago. She was no longer the woman I moved miles to get away from the minute I graduated high school, and was now the woman I couldn't be away from without having an anxiety attack. This, as you can imagine, took a fair bit of adjusting to. For everyone. I wasn't easy to live with.

Like a child I would regularly throw temper tantrums.

I was careful never to swear in front of my mother (something I would respectfully never dream of doing) but the minute I got rid of her I'd be muttering unmentionables under my breath, a weight of guilt pressing so hard on my chest I felt like I was being suffocated.

Soon after that would come the tears. The stabbing agony of feeling like your going mad will turn anyone into a Jekyll and Hyde reasonably rapidly. You think the feelings of self loathing, loss and being misunderstood end with getting your drivers license and leaving the institution behind.

Truth is, 'growing up' never really ends. The trials and tribulations keep on coming, and each time you hope that you are just more prepared to deal with it. Finding your way in the world doesn't ever end. It's a continuum as unfathomable as outer space.
There's always something new to discover; always a new problem to navigate. The choice of dealing with this however is until the end of time austere; Fight, or flight?

 How can I describe 'Living death' to you? Those of you who have experienced it will now be feeling a rush of comprehension. There will be sadness behind your eyes. A weight in you abdomen. But how can I describe it?

Can you imagine living in a house that you are never able to leave? The happy hum of children playing in the streets waft up to your window, as you lean as far forward in your chair as you can, to watch. It's like being a child, and being starved. Being starved the affection of your peers, of experiences you crave beyond any reasonable hope of happening. It's like watching chocolate being made in front of you every day but knowing that in your life, or at least for years to come, you may never taste it on your lips. It's like knowing that anything that will make you happy, give you relief, set you free from your prison, will make you sick.

It's exhaustion, so bone shattering that it affects every ounce of your entire being, day in and day out. It's pain that slithers over you like a poisonous snake and threatens to attack, should you stay anything but still. It's nausea, headaches, dizziness, confusion, anxiety, memory problems, muscle pain, weakness and sensory overload (to name but a few) occupying every cell in your being, making living almost hopeless. On a bad day, just to stand, to walk alone can be a task laudable of a nap. To leave the house; a pleasure so splendid it makes you cry, but a task so scary it makes your legs buckle, and your heart pound with the force of adrenaline pumping through your aching veins with such vivacity it hurts, with nowhere for it to go.

It's like living with something in you that you know just doesn't belong, and as of yet there is no known way of getting it out.

It's like you're broken.

A futile toy, tossed to the back of the closet just because your batteries have run out.

To the outside world you show the face they want to see. The happy girl with glowing features, and a strength that is admirable. The stoic denial I talked about works well with practise.

But on the inside, you're screaming.

Calm and pale you wait by the phone, body aching, brain fog (what we call the 'head problems') galore, hoping that someone will call. But there's hardly anyone left. In Living Death you watch the world and the horrors it holds within its walls.

Let me teach you this; watch closely enough, and you'll be enlightened.

The people you once would trust with your life, left you. They find you useless and worthless. What good is a friend after all if they cannot get bladdered with you on a Saturday night?

I find myself smiling. Is it possible I've dodged a bullet?

I do have problems yes, but I know now that they are small. Read the papers, watch the news and I find that in my sorry state I am still a lucky one. They are a few, I could count them on one hand, but I do have people in my life who love me. Who take care of me. Who don't see the sick scared girl before them, but the me inside. No one sufferer of ME is the same, but their journeys will collide. For we know, that there is hope, and we choose, to fight.