I’m in a clicking mood today, which I guess is another way of saying the world is a little foggy, just custard up to my ankles and rising. I’m not sure when it started but I have noticed that I now take a strange happiness from foggy days, maybe just simply because the day passes before I know it, as I’m not totally locked into anything I’m doing so there is no chance of being aware of time. The more I look at this odd illness I am finding compensations in some of the symptoms, almost as though there exist purely to make life easier with the rest of them. I doubt defective cells actually think on their own, but along with a sense of humor, some do seem to be compassionate. Well how else do you explain something that on one hand fills you with pain and makes you fall all over the place, then lets you totally forget about it, or locks you in your home where there is little to do and little to keep you busy, then makes you sleep most of it. I suppose life is like that as they say give with one hand but takes with the other.
Luckily other than my usual left leg from hell and a digestive system that won’t fade back into the background as it is for most people things are reasonably settled for the last couple of days. When things are on the good side I still get this urge to see if I could hold down a job and live a productive life. Even on occasions I question if I am really as ill as I normally feel, then everything changes again and those thoughts disappear because I have no doubt that I am ill. I don’t know if this the normal cycle of feelings for all in my position, I often think it is there because of all those years that I was told by Doctors that there was nothing wrong with me. The years that I began to believe them, not knowing that those good spells were remission, something long gone. It may be just a longing to turn the clock back and to be part of a world I haven’t even seen for many years. I know that it’s nuts to even think about working or anything along that line, but I guess we all want a simple life, earning our way through each month, rather than being forced to live on a minimum income. It is actually really hard to accept, if you go to my front page of this blog there is a set of 6 pictures showing different views of how chronic illness is perceived, but there is one thing missing from it and that is how it feels to be in a position that means I have to accept disability payments. So often there is this view that the chronically ill are pariahs, scroungers, living off the country. What isn’t seen or even discussed is the pain that being in that position can actually causes in itself. I long to be in the position where I am earning a living again and I could sign off and not accept those payments. Without them well we wouldn’t have a home, or food or any of the basic things we all need to live, but it doesn’t mean we are happy to live this way. If I could go back to looking at my bank account and seeing one payment going in per month, rather than 3 that don’t add up to anything near what I had before, believe me I would be really happy. I am extremely grateful that there is that safety net that takes over and shows a level of care from all those who are able bodied, but pride I suppose makes me find it hard to accept that this is the way it will be for the rest of my life.
Disability comes with a whole rack of things that are hard to accept and are so often the total opposite to what those who are fit and healthy can’t fully understand. There are hurdles from day one onwards, hurdles that are outside how your health makes you feel and this is just one of them, but because it is so focused on by governments and charities it is one that goes on month after month moving in to years. On the psychological side, pride is one of the most painful things to have bashed time after time after time and especially when so many out there see you as some type of fraud.