So here we are, Monday again and it’s a new week. It used to be one of the driving forces in my week, what day it was, what was planned for it and where I was going to be, now it is irrelevant as the weather. 8 year of being housebound and my mind is still searching for that “to do” list and wants to plan out what needs to be done in detail, just as I did for so many years before, I can’t help wondering if I will ever settle into what is a fact, I don’t work any longer and what day it is, makes not the slightest difference as my “to do” list was written years ago now and then I changed its name to routine. It’s odd really that I should think that way, as if I sit and add up the years that I spent in a real job, as in not a job where the majority was plain simple fun, it only comes to a total of 17 years, a tiny part of my life, but it had such a big impact on me and to be honest one I didn’t really like. I don’t know when, but I am sure eventually the time will come when the business world won’t rule how people look and how we express ourselves. It used to amuse me the number of people who I have met online who almost as soon as the corporate shackles were shed, dyed their hair some mad colour and loved it, so much so, I now believe that people would look very different if there wasn’t this business boss somewhere demanding that we conform to their rules. I guess that day won’t truly arrive until we have a heavily pierced and tattooed, Mohican proud prime minister, probably better still one that is a cross dresser, after all, it is their brain that really matters, not the corporate uniform.
I tried the other day to once again put together the information that I want to take to the hospital when I go next week, but I keep falling into the same hole, it starts to turn into a post rather than medical information. Adam says it doesn’t matter, what matters is having it with us and passing it over so they have no excuse to not know the full picture as it’s there for them to read. I know he is right, but I guess it is that business person inside me that is fighting with the writer, I know how to put together a meeting document but they are so cold and without the feeling that I feel is so important to be in there. If I go down the business line, I land up with a cold skim over single page, that missing what I feel is the really important bit, the true impact of the whole thing on my life. When you live with pain, you know how wide a range of different pains there are, some are so unimportant that even you brush over them. Then there are at the other end of the scale pains that stop what you are doing, that eat into you mind and stop you from living as all of you are so locked into the whole thing, that it dominates your very existence at that moment. How do you put that into a bullet point or a one liner, where is that single word that truly shows all of that? Yesterday afternoon I was lying in bed just at that point where sleep is taking over and suddenly I had this feeling that I know all too well, it was this growing lump that builds and builds in pressure, pushing its way into and almost through the lower edge of my left ribcage, the best description of its feeling, is how I imagine it felt at first to the crew member in Alien when the first Alien appeared through his abdomen. My alien doesn’t burst out, it just sits there pushing and causing pain and pressure and on totally on cue when the pressure built my diaphragm joined in, cutting me in two and reducing my breath to a shallow shadow. About 80% of the time when I lie down I have at least one alien, often there are two, one on either side, just occasionally I manage three with a second living just below and to the left of its friend in my left ribcage. Bring it down to three or four words, explain to me how I am supposed to that remembering that is just one area out of many that I need words for. Last night we were just watching TV when out of nowhere I yawned, prior to that yawn I was sat happily, post it I had Adam concerned as to what was wrong and I had once again triggered a range of pains throughout my abdomen and chest. I know that no one can stop me yawning, I just want to be able to do so without having to fail at covering up the pain that followed, or then having to spend the next couple of hours unable to maintain on position for more than a minute without having to change it again because I can’t deal with the discomfort and pain around my ribs and in my stomach. Clearly I love to write, but there are some things that turn it into not just a challenge and a chore, but also a gauge on true reality.
I wrote yesterday about my suspicions that I was being milked for information which could help someone pull off a scam, it appears that I may have been more correct than I thought. It still isn’t absolute proof, but I was contacted by two other people on twitter who also had the same suspicions about people who had been in contact with them. When I thought it was just me, well as I said I wasn’t sure, but knowing other who read my post yesterday also had the same suspicion well I think that does build a bigger picture especially when you look at the numbers of people online who are disabled or living with chronic illness, against those who read my blog, who are only a tiny fraction of them. Life has made me a sceptic when it comes to people, yet I still always try to see the best in people first, as I hate the entire idea of treating everyone as though they are after something until they prove otherwise. I have been told many times that I am impossibly trusting and ridiculously honest about everything, but I would rather be a caring person than someone who has so many walls around them that they can’t live for a second without worrying if they have compromised their personal confidentiality and information. I just don’t get people who seem to want to not even tell someone their name, or object to CCTV being everywhere. I couldn’t care less if they wanted to put CCTV in my house as I have nothing to hide, well other than my naked body, but after that, what is the big deal, even if my medical notes somehow appeared online so what, I have nothing to hide. No, I’m not that stupid as to give out enough info about myself so that someone might be able to commit identity fraud, I am very aware of that, but after that, I have nothing to hide. To be honest, when people are that guarded, I always wonder what they have done that makes them so scared, what laws have they broken or are planning to break, what is it they are hiding? This is the first time that I have ever felt as though I should be careful, not for me, but because I totally hate the idea that what I write or say, might be used to assist someone in committing a crime, regardless of who they are committing it against. For me, well I’m not going to change, but I am going to be that bit more aware of what others might be up to and just as I did before, I will give some false replies to their questions if I have any suspicion about them.
It’s time I headed back into trying to write my document for the doctor, I am hoping that by doing it bit by bit over a few days, that I will be able to trim and compact it into the document I am looking for, after all, all I can do is try, if I don’t my fear is all I will receive is yet another compromising pat on my head.
Read my blog from 2 years ago today – 11/05/13 – That’s not funny! Well actually it is….
Some days just feel wrong, not for any reason more tangible than a general irritation in our minds telling us so. The first steps into today were to find myself once again in that strange half-world quietly picking at and pulling my duvet cover, in the attempt to separate what, well that’s missing now, but I know I was in that strange dream again. When the alarm went off I know I jumped into turning it off, but I was somehow balanced on the very edge of the bed and my……
TELL THEM TO IMAGINE: BEING WRAPPED TIGHTLY IN BARBED WIRE,FROM HEAD TO TOE, WHILE SOMEONE IS RIPPING OUT A PIECE OF YOU BIT BY BIT; AND NOT BEING ABLE TO SCREAM OR CRY BECAUSE IT MAKES IT WORSE.