I sometimes worry that what I write about here can appear to be a somewhat bleak picture of the realities of chronic illness, and to be fair on some levels it is impossible to not paint things in that light. None of us would put at the top of a list of things to achieve in life as being chronically ill and housebound, but it really isn’t all as bad as your or even my imagination can come up with. I know because people tell me that they are inspired by what I write, so clearly I am achieving some sort of balance, but it is incredibly hard to sit here and set out to write a post about all the great things in my daily life, well think about it, who could. Life isn’t like that for anyone, and if they tried to convince you otherwise, you wouldn’t believe them at all, or worse still you would put them down as a fruit cake. Daily life for me is not really that different than it is for everyone else on this planet, and as boring as that is, few of us are in a hurry for it to end, I am no different, I just have extra things to deal with on top of just living. It is your values on daily life that change, for you to have a good day it would probably include work going well, the children not fighting or going out for a lovely meal, as it is those small things that change ordinary into great. For me it is just the same small things, basic things just like you, change my day from just a day into a great day, and just like you they can also change it into a really bad day. Regardless of what my health has achieved, I am still just a person and one that reacts to life just as everyone else does.
Yesterday I had my weekly fight to get my hair washed, not a biggie just not something I really enjoy, but I managed to turn it into a trial that is still causing me pain and problems. I forgot to bring with me into the bathroom the dark blue towel I use for my hair as it is dyed dark purple. I wasn’t dyeing my hair yesterday but I have found over the years that it doesn’t seem to matter how often you have washed your hair, there is all to often even weeks later some lose colour that leaches in to the towel, my bathroom towels are cream. Standing in the shower cubical, dripping wet and without my towel, I had a choice, chance it or create a wet trail to the kitchen and back to get the one I needed. I took a chance, and I lost! Once dressed I was left with a cream towel which had some pale pink lines on it and I knew I had to wash it there and then or it would stain. I tried to wash it by hand as I would have done years ago, but it just showed me how useless my hands had become, I couldn’t do it, the weight of a wet hand towel was too much for me. I did what I could to get the water out of it and threw it into the washing machine and went to find other white washing to go into the machine with it. I set the machine up and left it to do it’s job.
I know that doesn’t sound like much but that is the first time I have done any washing for years. I sat here playing a game feeling rather chuffed with myself, I had carried, OK in a couple of trips a large pile of washing from the basket to the kitchen, I had dealt with it all against the odds that it would be too much. You wouldn’t believe how something that small can lift your spirits and make it a good day, but that maybe was my mistake, I ticked the good box too soon. This is where my life becomes different from yours, I don’t get to have the good for long, within about half an hour the pain started in my arms, shoulders and neck. With my hair still being wet I had stood up to brush it through again and as I lifted my arm the pain screamed through me. When I went to bed last night it was as thought someone had cut my body off below my bust, as the pain in my upper body was over shadowing everything else. Here I am now 24hrs later and I am still paying for my few minutes of achievement, the upper body section is still painful and every movement reminds me. So how do I see yesterday now, I still see it as a good day, I was faced with a problem, one that I had to deal with and I knew that my body wasn’t really capable of, but I did it. Being proud of having a shower and doing some washing may sound stupid to you, and it would have done to me years ago as well, but it was a major effort with a big price to pay and to someone who’s body normally just sits or sleeps, it is the equivalent of running a marathon.
I suppose the point is that all may to some sound a bleak way to live, but to others who like me live this life, I expect they too like me will smile knowing just how important and how good it feels to achieve a huge nothing.