My entire body seems to be on fire today, something has triggered a mass eruption of nerve signals. I noticed it within a few minutes of waking up, I had gone through my normal half awake wonder around, going to the loo, fetching a glass of coke and lighting my first cigarette of the day, when bang, the upper third of my body was on fire. Burning skin is an odd sensation as it one notch backwards from itching, they are locked together so closely that if I do scratch my skin the flare to flames is only a centimetre behind my nails. Equally as burning starts to fade, it travels back step by step through the itchy phase, the trick then is not to scratch, something we all know is difficult. Within half an hour of being up, when I was actually, at last, starting to feel that I was awake, my entire body was alight, with nothing I could do other than sit there and accept it. What brought this all on I haven’t the slightest idea, but it also included both hugs and the feeling that I had a rock lodged under the left side of my ribs. The intensity and locations keep changing, but as yet they have shown no sign of shutting up, I keep losing the three toes on the outside of my left foot, mind you that has been happening on and off a lot in the last few weeks. Something I know I haven’t mentioned is the itching of my scalp, no nothing to do with my shampoo, it is, in fact, one of the earliest nerve sensation madness I remember. I also remember my doctor at the time having no idea what was wrong with me, but I was scratching at it so badly that I had weeping scars and the signs of past bleeding all over the place. He gave me a shampoo on prescription that did nothing, I know now what it was, but that didn’t help with the repeat sessions I have had from then on.

I have lost count how many times I have managed to scratch right through my skin, not just on my head, it was just the start of a life spent scratching uncontrollably. Second to my scalp, it is my ears that I have destroyed the most frequently, to the point that my constant scratching and pulling at them, caused the multiple earring holes to join together, eventually landing me up needing my ear lobe to cut off, as I was in danger of it falling off. I used to have long finger nails between flares, as when my health went nuts, I scratched more and more, I would cut them off just to protect myself, regrowing them when life returned to normal. When I got my wheelchair they had to go forever as I simply couldn’t make a fist without digging them into myself, strangely I never grew them back and it is only recently I have started trying to. It isn’t the old vanity thing, this time, it is practical, the worse my dexterity gets the harder I am finding getting my tablets out of their blister packs, a long thumbnail helps, but looks silly on its own. This time, there are no points, they flat over the end so I can’t do too much damage and I have no intention on growing talons again, just too much work.

I haven’t mentioned this as I know how Adam responds to my writing about things he isn’t comfortable being totally public, but I am writing it today because I am so proud of him. Like myself, he left school without qualifications and has worked in jobs that he felt limited by, but after several years of working for the NHS, he is now going to put some of that right. Yesterday he was at an interview for a place at college to get an HNC in “Patient care, non-medical”, from September he will be at college one day a week getting what he has felt was out of his reach, qualifications. He was worried about not getting through the interview, but came home glowing from ear to ear, not only has he got a place but the interviewer said so many great things about him, that he has at last accepted that I am not the only person who see he can do so much more. Self-confidence has always been a problem for him and I as his wife trying to build it and push him forward, well is limited, as I am his wife, my telling him that he is wonderful and capable of so much more, is easy to ignore. I thought several years ago that he had passed that point, when I pushed him into going for a job with a bank that he thought was way out of his grasp, he got the job, but unfortunately it wasn’t until he was working for them that the truth of the job came out, it was selling loans to people who couldn’t afford to pay them back, high-risk loans, he was never comfortable with it and just couldn’t do what they wanted him to. The job lasted a year, it was a year filled with so many other problems, that he returned to his personal position of little self-belief. So I am so proud and so pleased to see it return, but this time in a way that he feels comfortable with, one year of collage, a pay rise at the end of it and hopefully what he wants, even more, a better position still within the NHS. Our next hurdle is to buy him a decent laptop as the one he has is actually past by a thousand miles, the point when most would have ditched it, we just couldn’t afford to, especially as it was in reality just a toy. I am so glad that this possibility came up, I have no doubt that he will complete it and pass it, I just hope that it might also spark him into continuing, possibly with some evening courses that will give him more qualifications for the future.

The world has changed dramatically in the last few years, I never once felt I was held back by having no qualifications and to be honest I don’t think qualifications stand for much, once you are 5 years past getting the last one you have, past that it is what you did with them that matters. Anyone who is 30 years old, might of well have not even been to school as no one is interested, even a degree starts to loose it’s purpose unless you have used it to it’s full since you qualified. I can see these days and in the future that continual education and qualifications will be what is needed and they will all need to be kept updated. Completing courses whilst working at the same time, says a lot more to an employer than those who just had a job and hasn’t opened a single book since they left full-time schooling. It has crossed my mind several times, I have the time but I don’t have the way of getting to classes, the only option left would be to do home study courses and I know they are expensive, my last job was with the world’s largest supplier of such courses, if you are working the cost isn’t so much an issue, but now I just couldn’t find the money. I for one wouldn’t be able to say at the end of it, I can now earn more money, I would be just doing it for the pure fun.

I have thought about not just what I do with my time now that I can’t work, but I have thought about it on the bigger scale as well. There must be many many people out there who would really enjoy studying, but due to their health can’t stick to a time frame most courses demand, don’t have the income to pay for home study and couldn’t attend final exams. I have said many times that I do put time into learning, mainly from the TV, but some online, for my favourite subject of history, but it is limited and although enjoyable, it doesn’t have that self-satisfaction that achieving a certificate does. How you see yourself once you are disabled it hugely important, the number of people out there with depression speaks for itself. Setting yourself goals and achieving them makes a bigger difference than anything else I have found, but the world isn’t ready to work with us, or even open their minds far enough to see the benefits it would have.

Please read my blog from 2 years ago today – 25/07/12 – NHS Disaster

My blow up cushion has arrived and I know that I have to give it a few days before I can say if it is helping or not but at the minute it isn’t. It may sound life a really silly little thing, but it feels to me as though I have spent the last 6 months sitting on a wooden bench with no escape. I am sure you know what it is like to sit on a hard bench for a few hours, well that will set the picture but you have…..