Posts Tagged ‘burning’

So…you think I’m lazy, huh?

Saturday, January 23rd, 2010

It’s 3am. I’m lying in bed and for the life of me I simply can’t sleep. I suppose it doesn’t help that around 3am is when the air pressure changes either, but nevermind, it’s customary to sleep at night, – or so I’m told!

It’s not that I’m not tired, cause I am, I’m really tired and all I want to do is sleep. I’m not excited, nothing is happening tomorrow and nothing is on my mind. The only thing that is stopping me sleep is this damn pain and of course, the symptoms that go with it.

I lie with my eyes closed, I’m lying on my back and can feel the egyptian cotton bedclothes and my silky nighshirt touching my skin. The bed is fairly warm, but not as warm where legs are or my arms, they’re always cold to touch you see. The mattress is beautifully comfortable yet supportive. Sounds like the perfect situation, right? Wrong! The bedclothes feel so heavy against my skin, not only that but the fibres feel like white-hot barbed wires, pressing hard against my skin, making my skin blister, burn and itch with pain. The gentle, supportive pressure from the mattress feels like a hard stone block with billions of tiny pebbles, though surprisingly it’s the most comfortable thing that I can find to sit on. The fibres of my nightshirt are, if possible, worse than the white hot, barbed wire covers. Worse still, there are a thousand little people from the book, “Gullivers Travels” who seem to have come to life, leaped out of the book and are consistantly stabbing me with objects so tiny they’re invisible and so sharp they penitrate my skin to the bone. I have spasm after spasm, burn after burn, stab after stab.

Finally I fall asleep. The pain doesn’t stop, the little people don’t stop stabbing me and I could swear that barbed wire is getting hotter! Despite being asleep I moan and cry with the pain and the sensations that I shouldn’t be feeling at all. I wake up every hour at least once and stare at the clock beside my bed, pleading with my disobedient body for a few hours of real sleep.

Morning comes and I’m as exhaused as when I went to bed last night. My legs and arms hurt so much and I can feel the dried tears on my cheeks. I know that my arms and legs are there, somwhere, after all they hurt enough, but ask me where they were and I really couldn’t say. I couldn’t even tell you which position they were in.

And once again, it’s the begining of the day….

“How Are You?”

Sunday, August 2nd, 2009

The telephone rings and I struggle to press the button to answer the call. It’s a friend who I haven’t spoken to in a while. The inevitable question projects itself through the earpiece of the telephone,

image from http://www.ci.loveland.co.us/

image from http://www.ci.loveland.co.us/

and I cringe.

What am I supposed to say to that? Am I supposed to conform to good old British manners and take a “tally ho!” attitude, lie through my teeth and reply, as expected, “fine thanks, how are you?” or do I speak the truth and refuse to conform to the good old British manners?

The truth is, try as people may, unless they’re experiencing it in some context, either having RSD/CRPS themselves or being very close to someone who suffers from it, unless it’s a big impact on their lives too, they’re never going to really understand. Of course it’s polite to ask how a person is, but do they really want to know the answer, or is it just passing politeness?

People get bored of their friends being unwell all of the time and it’s hard enough to experience and understand the link between a minor injury and this awful condition, destined to live a life of intolerable and incurable pain, for an undetermined period of time, so it’s no wonder than many friends and family members simply cannot make the link and are confused as to why someone didn’t get better after an injury so minor.

In a split second a million thoughts go racing through my mind, – do I tell the truth, or do I conform to British politeness? Do they really want to know how I am? If I tell them frankly with they think I’ve gone mad and call the men in white coats to come and get me? Would they understand? How would they react?

Quite simply, if I tell them the truth, I fear that I’d scare them and that they wouldn’t understand. If I conform to society and it’s politeness, they won’t understand why, when they call up in a couple of days and ask me to meet them in town for a coffee, I have to decline and say that I’m not feeling too good. Of course I could simply change the subject.

I suppose it all comes down to how much I really want that person to know about my situation – and how much I want them to see through my painted smile.

To be honest, today is a fairly bad day. I over-did things a few days ago and didn’t pace myself, so now I’m suffering. My hands are burning and itching so much that I want to claw them out, starting with my palms, my finger tips hurt so much but unless I look at them, I have no idea where they are and try as I may, I cannot make a fist or straighten my hands out fully. They hurt so much that I’m finding it hard to hold back the tears and keep up appearances and despite it being mid-afternoon, I still haven’t managed to get dressed yet. It was a struggle to get washed, brushing my teeth then going back an hour later to wash my face properly and apply moisturiser, simply because it makes my hands burn and hurt even more. I’m not even holding the telephone, because the smooth texture of the handset feels like I’m holding burning hot shards of glass, so I rest my head on my shoulder with the handset inbetween.

This time I choose to change the subject. “Oh I’m so sorry I haven’t been in touch, things have just been a bit hectic lately with ….” and the question fades into insignificance. My friend only understands a little that I’m not in the greatest of health and he’s one of the people that for some reason, I don’t feel truly comfortable letting them see beyond my painted smile and into my world of pain.

So next time you ask “how are you?” – ask yourself “am I really prepared for a truthful answer?”