Sorry, I lied; there will be a little bit more woe is me in this post...
As of this point I have spent more of my life this way than as an able-bodied person and as such I have adapted rather well mentally and physically. I have been able to partition my mind in such a way that I can separate my life from my disability. For me this seems to work out quite well as I can with relative ease not have to think about how terrible my condition actually is. I don't have to sit there and worry about my horrific death which is probably what awaits me. As long as I don't get too stressed and split my partition in two. If that makes sense. However, at the moment my equilibrium has quite drastically been upset. It's not unusual for me to get the occasional problem but for quite a while now I have just had problem after problem after problem. I had major issues with my feeding tube which caused me to stop eating properly which in turn caused me a whole bunch of issues with my stomach. The care agency I was with went downhill really quickly and started sending me carers which were not sufficiently trained. They would not even give me an opportunity to actually train them and then when I did they would send them for the wrong shift for instance I would put in the effort to train them to work a night shift and then they would be sent to work a dayshift. I pretty much spent the last three months organising my own carers and stressing out about that. At the same time and probably caused by my care issues I would say that I have started losing the ability to breathe unaided about a year before I probably would have done anyway. I now struggle to come of my ventilator for any length of time that would actually allow me to go out. At the moment the machine that I use to breath does not attach to my wheelchair and it also needs me to wear a rather cumbersome and indiscrete mask over my nose. I want to go out on dates and meet women but I fear that this machine might not really allow for that unless I can get a smaller mask or possibly a tracheostomy (more on that later). And to top it off sending untrained carers meant that I have spent a great deal of time in bed because I could not get up. All that left me to do was think about stuff and since I was not really living my life at this point all I could think about was my disability which made me feel rather depressed. So for the past three months my life has been a lot more miserable and depressing than it usually is. Normally, no matter how bad things get I can still manage to have a laugh and enjoy myself as much as I can.
Finally though I feel that things might be starting to turn a corner at long last. My feeding tube has finally been fixed and whilst it does still leak on occasion it now does not leak every time I move, have a drink or try to eat something. The care agency I was on about is now about to cease trading which will probably be beneficial for everybody involved with it. This will mean that I now have an opportunity to either find a new agency or manage all aspects of my care which will mean that in theory I should never be left without care because I would have an on-call system and not allow every single one of my carers to have a holiday at the same time. I am due to see the ventilator people in the middle of June which will mean I will be able to try some new masks and talk about some of the issues that were troubling me. So hopefully within the next few months I won't have to worry about eating to stay alive. I won't have to worry about being left without care and I won't have to worry about not being able to breathe because one way or another I will be able to use my ventilator. Then I finally will have all the time in the world to think about going out and enjoying myself as not just possible. I will just have to think about my life and not all the crap that will finally be able to be locked up in my little partition, at least for a little while.
Things had got that crap that now surely things can only get better. :-)