And then there are those nights...

Its been long over due, but still I am never prepared for it. Those nights when no matter how tired I am the pain levels are so high nothing is going to enable me to sleep. Welcome to the world of CRPS. As every sufferer will tell you the pain is a very singular thing, to some people its a constant burn to others a stabbing pain. For me tonight there is both stabbing through the lower back and subsequent burning through hips, knees and feet.

There is no rhyme or reason to this kind of pain, or what can set it off, but when it hits it hits hard and little can ease it. Ive tried lying down, elevating feet sitting up, you name it I have tried it. I am limited on what else I can take on the cocktail I have been taking. It is as if my body knows that in less than 7 hours it has to report to the doctors for a review.and 5 hours later it has to repeat this findings to the benefits officer.

That's the joys of living with long term illnesses, the need to be reviewed, and then justify these reviews to some one who little knowledge of my day to day existence with pain and frustration. Its not these people don't want to understand, but more it is impossible to understand how painful it can be just to make a cup of tea some days, yet others it can be almost a normal undertaking. It nothing like a person who is living with something the loss of limb, people can see that disability, but the affects can be as crippling. Saying that when we try to explain it or have to fill in a disability form the questions are the same for everyone, whether you are missing a limb, suffering from a mental illness or a CRPS sufferer. I have heard of ex soldiers missing various limbs having to the answer the question "are they liking to gain the missing limb back" ? Seriously I know there have been progression in medical science but I don't think we have quite got that far. Its as insulting for a parent of a child born with total blindness due to a fault with the optic nerve, being ask is their child's sight like to improve in the next 6 months, How are those poor parents left to feel after that. I was asked by one officer at the benefits agency, do I take anything  for the pain that would enable me to work. By then I usually list everything I am on what its for and then get a silence followed by " how are you awake". There is my point the pain can be so great like tonight it would take a full on anaesthetic to knock me out.

I am not.saying these people are uncaring, in most cases far from it, but I really wish they would stop and think for a minute before they speak. If they realised that the person before them is struggling to walk on crutches from the main door to the desk where they have to report, and that sweat across their brow isn't for show but pure exhaustion from that effort. Or their speech is slurred or even fast an erratic it maybe from the medication they have taken to give them the mobility to attend this interview. I know for a fact I am going to have to attend a different kind of interview soon w, with an unknown doctor who is going to judge me on his own observations and if I am lucky he will read the notes from my GP, physio and by then specialist. Far enough there will always be people who try to cheat the system, but for every one who cheats the system there are ten in desperate need for help. It will be hard for me because backs are the obvious cheat, but without my crutches at the moment I am almost folded in half because my disc and vertebrae can't stand the pressure. Mixed with over stimulated pain sensors courtesy of CRPS and its painful. But pain is hard to explain, how do you tell someone that the pain courses from your lower back to knees is so sharp you could scream 24/7 and you never know when you put your foot down whether the leg is going to support your weight or crumble due to the pain. For me the scariest one is walking up or down the stairs in case i physically lock up or stepping up to the foot stall and being jammed cursing in pain and scared to move back down because the muscles are screaming in pain so much that I am fearful if I move i am going to tear a muscle or worse.

That is my life and at the moment there wont be sleep for quite a while until my brain gets bored with the pain and tunes it out. But for now I am watching yet more junk TV frying a few brain cells and remembering the days that were free from pain.