That silly headache is still around, it’s intensity has reduced but it isn’t happy to leave yet, this dull ache is actually in itself draining, it makes you want to curl up and do nothing although that isn’t going to help at all. There are many days that I feel that way, that just lying there curled up in the dark, warm and safe in my bed, with nothing to distract my little world of warmth and silence would be just perfect. It is a thought that is totally at odds with the me of years ago, I was never a person who sat still, far less lay around doing nothing, life had so much in it to be done, so why waste any of it. I was one of life’s bluebottles, something somewhere always needed doing, and if I did have to sit still, well I always kept my hands busy, creating something, clothing, or just decorative items to enhance our surroundings. Two me’s so far apart, that I doubt anyone out there who knew me years ago, would be able to find the connection between the two people.
When illness takes hold you don’t have a choices of where you will land up and you would then think that you don’t have any control over any of it. That is the picture I have seen painted out for me over and over again, this image that regardless of what is wrong with you, or who you are, there is one inevitability you will become a total victim. I have seen people who within weeks of receiving their diagnosis, have suddenly become what I can only call a cripple. Not a word I like, but that is what they are, suddenly they are no longer part of the world, they have become pathetic, a creature of pity, someone just waiting to die. They have been crippled by diagnosis, not by their illness.
I didn’t make the transition unscarred, but I do remember making a clear decision that I wasn’t going to sit there waiting for the end to arrive. I still had a life and although it wasn’t the one I expected I was going to continue. I have said it often that I am not a fighter, you can’t fight chronic illness, you have to live with it, adjusting to it as it progresses. The adjustments you have to make at first seem superficial, I started by swatting the bluebottle, exhaustion forces that type of change, and I could continue here listing the physical changes as each was made, but those aren’t the changes that actually matter, they are just the ones that everyone sees. Inside you from the first day that you are told what is wrong onwards, you change, everyday you adapt not just your actions but your thought processes as well. There isn’t a clear path from one change to another and there isn’t a list as such that I can give you, but I know my total outlook on the world has changed beyond belief. I used to care like everyone else what people thought of me, how I looked, if what I was saying was going down well and was I coming across as I wanted to be heard. My home had to be like a picture in a magazine, ready for royalty to visit any second day or night. My mind was cluttered with tiny things that just don’t matter in the same way any longer. Physically I have been destroyed by illness but mentally I have been enriched by it.
I have discovered such a depth of feeling and importance in the smallest of things, subject I wouldn’t have given the time of day to, now fascinate me. I have had time at last to learn about all the things I thought unimportant, irrelevant to my life, or anyone elses, I now see actually have great thier importance is to the lives we all live. Not just has illness enriched my knowledge, but it has also opened up my love of life, and not just mine or those around me, but of all life. I didn’t know until the last few years just how much I really care about everything, I didn’t think it was possible, or realistic to actually go out of your way to find out about the things other spoke about, but I now do. Chronic illness may have taken away so much, but strangely it has give back as much and more than I ever expected. So saying I want to curl up in my bed, to just lie there wrapped in my duvet in the dark and silent, actually isn’t quite what it sounds. I’m not ready in anyway to be there for ever, but I don’t fear it either, as when I do just lie there occasionally, well my mind is more active than my bluebottle body ever was. I have so much to think about, so much to enjoy in my head, to analyse and try and make connections across subjects.
My adjustments have taken years, not weeks or months, some quickly others slowly. Some might have happened anyway, but I have no idea about that, all I do know is there is nothing to fear from being chronically ill. It’s not a nice to live with, but you actually can do just that, live with it and still have a real life, and real happiness.