after the marathon – back to the concrete road

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The title was my mums idea, this weekend I have been looking at the concrete foundations of the extension and trying to figure out what it’s going to be like. It’s too small for my liking but then I don’t think it would ever be big enough for my liking, I feel that because my mobility has been so greatly affected I need a lot more space to compensate. I am spending a lot of time battling with various fund managers to try to get funding for my accommodation and my care in the way that I want it. This may involve solicitors and letters to government but at least it’s keeping me busy. I’m still waiting on various equipment, referrals and news from my prospective employer, and apologies about the ITV Thames Valley story that never materialised, I am being assured that it will appear one day, I will let you know when I do. I really enjoy some of the comments I get on the website and the e-mails I get, thank you to those of you who do leave comments on the website, I really appreciate it but I don’t reply to them.

Today I have been a bit down, I seem to have either neck pain or strange neuropathic pain/sensation a lot of the time. It becomes very annoying trying to figure out what is causing the strange sensations, if it is some stimulus or if it is just sporadic and random. I think I find the hardest part of my situation is being uncomfortable or in pain and not knowing when or if I will get better, my body is broken and obviously the physical capabilities will most likely not recover. Aside from the physical aspect, sensation is all broken, at times I can’t tell if my sensations are due to damage or just malfunctioning nerves. I am so used to feeling ill for a short time and then feeling better or waiting for the effect of something toxic or physically damaging to wear off and the body to heal, it is hard to accept that the sensations I feel may not get better. Having a GP for a parent I always used to be confident in asking how long my stomach ache will go on for or what antibiotic to take for my chest infection or asking her to have a look in my ear because it hurts. There always seemed to be a solution or a finite duration of the pain, now it seems more difficult, I try to explain the pain/tingling/pins and needles but few people know what I’m talking about and sometimes no one has a solution. The most I can do is ask people to check any of the Hundred and one different things that could be making me feel ill. People tell me I should take more medication for my spasms neuropathic sensations and pain, but I would prefer some sensation to none, I can’t feel most of my body so therefore I don’t really want to dampen any sensation I do have. I believe that there are ways to reduce most of the uncomfortable sensations I have and some of the sensations are very important symptoms which I’m learning more and more about. It’s almost like my body is sending encrypted signals and can no longer perform the decryption autonomously, and therefore I have to try and figure out the causes myself. This coupled with sporadic random neuropathic sensation can be difficult to deal with let alone try to decipher, but I suppose slowly I will become more able to discern the differences and figure out what is going on.

I find it helpful to write these things down, and as Fiona, a friend from hospital said, these trials are sent to those that can manage.

I had a great weekend, spending time in the sunshine, playing board games and talking to my grandad girlfriend sister Mum and Elena (brother’s girlfriend). My grandfather’s house is such a beautiful place, I am really lucky to be able to spend time there. We had some interesting discussions, about the nature of effort, whether an effort denotes a spending of energy or just the transfer of energy to be recouped at a later date in benefits, whether you lose or in fact gain something when you make an effort? We were discussing about success and why people become so focused on success and whether people can become totally self-involved through the relentless pursuit of success. This led on to a discussion of selfishness and me voicing my opinion that human nature is to be selfish and this has to be for evolution to occur, if we are not selfish by instinct then we would not survive, it is only the conscious wilful overriding of our selfish instincts which allows us to put others before ourselves and this is the basis and human characteristic that allows for religion and society to thrive. Since we are not always conscious of the decisions we make, instinct will often make those decisions for us and therefore we will make selfish actions. We then talked about compromise and my grandfather’s idea of a virtuous compromise as opposed to a destructive compromise, where a virtuous compromise leads on to other opportunities and developments, and the idea that progress cannot be made without compromise. Thank you to Elena, Polly and Michael for this very interesting conversation.2