Thanks to the responses I had to yesterdays post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year, running tests on people like me who know our bodies in detail, as we have to, and know what is wrong with us without all these tests. My story is just one of many, but I am once again in the position where I told them what was wrong and why, all I wanted then and now, is help with dealing with it, yet I have had months of my problems getting worse without any help, as they wanted the results before they tried anything new. It’s nuts! I can’t help but think that there has to be a better way of doing all of this, that will actually help the people who need it, when they need it. Something that maybe all of us should think about, as clearly to me the medics aren’t thinking about at all. The real effect on me mentally is that of being battered and bruised once again by the medics. I have mentioned several times along the way, I really regret letting myself be pushed into the medical world that I had shut out for 5 years. To date all that has been achieved is more pain, more exposure to looks of pity and yet more confirmation that I don’t need, or belong, in the outside world any longer, it just isn’t worth it. The safest, least painful and least exhausting is my home, the home laid out so that I am independent as much as possible within it, something that is impossible outside it, my home is my sanctuary.
Since the other days bad bout it seems to have settled to it’s normal behavior, of discomfort and isolated section of pain for short spells, bearable as they are just that short spells. I can say it has returned to normal as I am noticing my left leg the most again, funny but that is a strange relief. How my life landed up at a point that I would consider a painful leg a blessing, is beyond me, but that is just the way life is. I suppose that is the way I measure things now, a good day is when I have short bouts of pain and constant discomfort, a bad day is when I am in constant acute pain. Every measurement of life changes, I used to measure things by how my life with Adam was and how well my work was going, but illness changes all that. You don’t even notice it happening, it just changes. Suddenly I find that a great achievement is managing to walk from my computer to the kitchen without holding on to the wall all the way there, or making the same journey in less pain than the last visit. Silly small things take over all the old measure, the whole meaning of life changes and what was important vanishes totally off the end of life’s list. I can look back over my life with some pride at what I did achieve along the way, but that is the past and comparisons just don’t exist. Happiness now comes from the smallest thing, the smallest human contact or approving act. I would never have thought that someone retweeting my tweets, would always make me smile, or that checking daily to see if anyone clicked and ad on my blog would become a ritual in my life, just earning a few pennies seems somehow important. To know I have made someone smile because of a picture I posted or that I have opened a door for someone to a world they knew nothing about, all these things have become important and a source of joy.
Someone who is totally able bodied I don’t think can totally understand the mindset change that happens, or how you could possibly be elated just by making it to the loo in time. I know that the me of 20 years ago would have laughed at the thought that that might be my most important achievement in a day. I know now that I can see from both sides, that to truly understand anything you have to live it. But I also believe that it is possible to get an insight, enough of an understanding to know how to react or even act, when faced with an individual who’s life is so different, without gawping or running away. The only way that will happen is if people like me are willing to lay our lives open so that everyone can see it.