I didn’t sleep last night as well as I could have, I kept waking because of the pain in my back. It’s a pain that appears from time to time, I think because I always sleep flat on my back, not the position that most people seem to. Years ago I know I went to sleep on my side and once asleep I rolled to my back, but the bed also showed that I did move around a little, these it shows I don’t move a muscle most nights. I really don’t think our spines are designed for that, nor are our lungs, but they are the very reason that I am not locked in one position. It is now just too painful to put that sort of pressure on my sides, so I lie like a plank every night, putting more and more pressure on my back and it just doesn’t like it. For the first time ever I had the idea last night of using the mattress elevator to lift the top of the bed slightly in the hope it would change my position enough to relieve it, it did! I can’t believe that I have had the elevator there for over a year, but not once thought of using it other than an assistance to get out of bed. Sometimes I really do lack the brains I was born with, I have lost count how many things in the last few years that I have found myself stuck or unable to fix something and then suddenly I am hit with the answer, an answer that had been there all along. I am going to test it over the next few days, as I am hoping that I just might once again be able to curl up like everyone else does, if the bed is slightly lifted. It is such a tiny thing to want, but there is an amazing basic comfort in just curling up and drifting into sleep, it is often the small things in life that become important and for me this is one of them.
Chronic illness has a habit of nibbling away at all the things you do day to day, without ever thinking about what you are doing. All of us curl up in bed and go to sleep, all of us can get dressed or have a shower, or make a meal and eat, well not all of us, some of us have lost all those basic abilities. I remember when my daughter was getting married everyone was trying to find away of getting me there, I landed up watching it live on line, which was the perfect solution, but I was amazed by the number of people trying to find a solution, because it was a huge event. What I long for aren’t the huge gestures, they are the small solutions, that would change my life and many others and would provide a bigger impact on our lives than you might imagine. All the way though my illness I have noticed that the specialist and therapist all concentrate on what they see as the major thing like walking, talking and eating, yes all important, but where are the gadgets and the people to help with the small, small but hugely important things that become almost impossible. I no longer see getting out of the house, as being the top of my list of things I would like to be able to do, the top of the list changes all the time depending on what I am stuck with that day, but try as I might I never find the gadget to help or someone to show me a different way.
I know I am slowly loosing the ability to solve things myself, I used to be really good at it and always found a way round something by myself at the time I needed to, these days my brain just won’t do that any longer. What ever section of my brain it is that solves problems is no longer working as it did. Just like using the mattress elevator to relieve my back pain, all the problems I come across now, take weeks and months at times, to actually recognise the simplest solutions. I recognised it several months ago when I stopped playing games on my PC that required me to put thought into solving puzzles, they had been my favourite style of games for years, now I am reduced to just playing simple card games, as my brain couldn’t even solve a Sudoku grid if I asked it to. It’s hard to find yourself facing something simple, that you recognise as simple, but you can’t actually solve it by yourself. I have lost count of the times that I have wanted to eat something but I have been unable to actually prepare and cook it, as it was just too difficult, so I have eaten nothing. Solving the small things in life are far more important than solving the big thing, but where is the help or even recognition of that?
One of the things that seems to surprise many people about Adam and I is that we agree on very little, that doesn’t mean we argue all the time, it just means that when it comes to those arguments every couple have sparked by TV programs, we almost always fall on different sides of the line. Adam loves almost all music, I couldn’t care if I never heard music again, but if I must, let it be progressive metal, his least favourite genre. There isn’t one food we can agree on, Adam likes everything traditional and over cooked, I prefer adventurous foods cooked as little as possible. TV programs, films, fashion, décor, I could list things all day long, you name it we are opposites, the only thing we do agree on is the most important, we love each other and everything else just really doesn’t matter. It’s nearly 16 years that we have been together and despite being chalk and cheese, it always comes down to love that hold us together and makes us able to ignore all the other stuff. I never understood when someone said they had found their soul mate, I always thought it was just one of those gushy things people said, as people fall in and out of love all the time, so what was this great difference, this bit so much more than just love that I just couldn’t see it. I can look back on other relationships I have been in, and all of them have one thing that is missing between Adam and I, a need on both sides to change or control the other. I have never wanted to change Adam and he has never tried to change me, we respect each other exactly as we are and allow each other to grow without trying to stifle it in any way. There is the magic, the thing that makes us strong and allows us to love each other and stay in love, respect, respect of the individuality of our personalities. So what made me write that, simple, I just don’t see it out there in the wider world and I just wish that I did.