Deluded

I seem to be getting more techy as the days go on since we bought our new TV, I honestly thought that my days of working with anything beyond the most basic of functions my PC provides was long gone. Yet suddenly here I am downloading, streaming and working on building a collection of things to watch so that I don’t wear a grove into our carpet just to see what is available on the TV and Sky box to watch. I did actually get round to emailing Samsung to find out if they made a more disabled friendly remote control, but as with most companies, they haven’t, yet another company that doesn’t seem to think that those of us who are anything other than perfect just might want to use their products. I honestly wish that every single person in this world who has had the slightest issue with anything made as standard and started hassling these companies, as unfortunately they only seem to employ perfect people in their design departments. I know I have said it before, but they are really missing a huge future advantage as our world’s ageing population means more and more people wish health issues who have the power to buy. Sorry for the mini-rant, but it has been a bugbear of mine since I first realised years ago I had managed to dial an incorrect phone number on my mobile, simply because I was hitting more than one key at a time due to my poor dexterity, it was bad enough on my phone to find I now have the same issue with the TV and it’s being made worse as I can’t even see the keys clearly, is just totally frustrating.

I guess we all have this dream when we become ill that our lives will just go on as they did until just a few days before we die, so being disabled isn’t going to be an issue, but it nearly always is, even if it is, unfortunately just for a short time. I remember being asked by just about everyone how I was when I fist had my diagnosis, as though I hadn’t been ill for all those years before, as if having a diagnosis suddenly made me ill. At the time, it made me angry because I had been telling them all I was ill for years and all they did was roll their eyes and dismiss me with a “here we go again” attitude, suddenly because someone had given it a name meant that I wasn’t making it up, but I never had been. I didn’t realise at that time, in fact, it took me a long time to realise, but it was those doubters who at first gave me the kick that I needed to take on the world. I wasn’t going to let them see any change in me in any way as I wasn’t changed, it was just a name for what I had always known was there. As I had done many times before in my life I took it too far, the first year with my health in full blown progression was fine, but I took it to the point that I wouldn’t have a walking stick or wheelchair when I clearly needed them, I pushed and pushed and I pushed it too far. I refused every gadget every possibility of help, because I was just too proud to admit and too stubborn to say that I wasn’t coping and that they were right, I was now disabled. It wasn’t what was happening to my body or even my mind that I couldn’t deal with, I’m more pig-headed than to let something like that to get to me, but I was also unknowingly fighting something no one could win against, a word, disabled, disabled didn’t happen to me, it happened to other people.

If I had to say what was the most difficult thing to adjust to and changed my world the most, strangely it is that one word, not the bad memory, the pain, bowel and bladder problems or any of the other things I could think of right now, it was quite simply the applying of that word to myself in my head. I was perfectly free about talking about it, filled in form after for about my disabilities, talked to doctors, nurses and Adam about it, but inside, I was still just as I had always been, I, me, Pam the person, wasn’t disabled, so why should I be willing to say with conviction that that was just what I was and that I accepted that 100%, I could act it, but feel it, no. It didn’t make any sense, but I knew even them, that it was a fact and it was a fact that anyone apart from me could see with ease yet I didn’t feel it. Like it or not the most precious thing we have, is ourselves and like any precious thing, we will ring fence it and protect it with our lives and beyond, I was simply in a way protecting myself, what I didn’t realise was I had to let go of the old me and take hold of the new me and as long as I held on, I wasn’t truly accepting and moving on, I was stagnating and doing so in a destructive way.

It wasn’t until I was made redundant, three years after I became housebound that it actually hit me that I wasn’t still me, I wasn’t the person who could get a job within seconds as I had always done in the past when I wanted one, no one was going to employ me as a disabled housebound person regardless what I was capable of doing for them. It was an incredibly painful and hard thing to adjust to, some of which is clear in the first year of this blog as that was when I took up blogging. I needed somewhere to sort out my thoughts and to help me make the adjustments I had been brushing aside for far too long. I wasn’t this sainted golden child who could just keep going forever, despite the fact my body and brain had been shutting down for years and I had to come to terms and not just say but believe that I was disabled and that didn’t mean written off, useless or done with, it meant I was still alive and if I was going to keep living, I had to work on it and work on it big style. There are so many well-meaning people in this world who come out with statements like “your only as disabled as you allow yourself to be”, or you aren’t “limited”, one I get a lot on twitter, but I am limited and I am disabled and I have to live with that. This is the real world not a dream or a fantasy, nice phrases and platitudes don’t make a life, they make a person who is deluded, just as I was.

Many times in the past I have said that chronic illness takes constant adjustments and it does, but all of us will have adjustments to make that for some reason we can’t, we hold back, gloss over and ever pretend that we have dealt with it, stop it, whatever it is, stop it right now. In the last three years I have grown so much as a person and before I could do that, I had to first just simply grow up and stop being a child, life isn’t fair and it isn’t easy for anyone, all of us disabled, chronically ill or not, have to somehow remain honest with ourselves, if we can’t, who on earth can we be truly honest with.

 

Please read my blog from 2 years ago today – 09/01/13 – To the Newly Diagnosed

Thanks to something I read online early this morning I have been left thinking back to when I got my diagnosis and what I could say to someone who has completed the first stage of any invisible illness, being believed and going through the battery of tests. At that point, it feels as though you……….

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