The changes you don’t expect

So much for making plans and setting out on a day where I thought I knew what would happen next. I normally shower in the afternoon but I had decided that from today I am going to shower in the morning just after I had allowed enough time for my meds to kick in. My reason for moving it are simple, I have just been so tired in the afternoon, that the whole process had turning in to a huge struggle. It was making less and less sense to have a late afternoon shower as I was finding myself dreading it, the pain and the exhaustion just pushed on into the evening making the time I was supposed to be enjoying with Adam was totally wasted as all I wanted was to head to bed the second my hair was dry. With my plans all set out I headed into the bedroom to lay out my fresh nightdress and dressing gowns undressed and then went to the bathroom to turn on the shower. It was making an odd sound and the water didn’t seem to be hitting off the wall as it usually does, it just seemed all wrong. For some reason there is no water pressure and what was there was running cold as it wasn’t strong enough to set the whole process working correctly. Of course like all humans I had to double check it and be sure that what I was seeing was correct, so I checked the pressure at the sink to find just a dribble, no shower this morning! I hate it when things like this happen, it doesn’t matter well or not, we all expect our homes to operate just as they are designed to and something as simple as running water, well it’s not being there is enough to turn the air in some homes many shades of blue, something I find doesn’t happen these days at all.

I have noticed that one of the blessings of being chronically ill is that your ability to deal with drama’s at first drops off to nil, everything that happens unplanned or not just seems to wind you up. It is as though when you are first unwell and especially when you don’t know what is really wrong, everything seems to stress you out and drive you into a state of exasperation with life. It is bad enough having a body filled with pain with out the disasters of dropping something totally unimportant like an egg, is enough to send you into a blue fit of anger and tears that stream uncontrollably. Looking back I often wonder what others thought of this mad woman who would start screaming and crying just because a tiny little thing had gone wrong. For about 15 years I know that I was totally unable to deal with anything out of the ordinary. I suspect that is why I chose to work for so long as a DJ as my first career move of working in a hotel was proved quickly to myself as not a good choice at all. To many things could just happen, uncontrollable and uncertain were the devils that made my life hell. There was no opportunity to relax and regenerate, having to work hours that just never seemed to end, took their toll on me and I in fact walked out after completing my third day in a row, each over 14hrs and each ending with me in tears as I walked home dreading the next day. I didn’t work for a full year after that, I needed to sort myself out as no doctor was helping me at all. DJing was perfect just 4hrs a day and wages more than double my previous work, well that worked well for me and there was no one to be the butt of my loss of control other than my records and their cases. Sitting looking back at all the different phases of living with illness, I know understand fully why some people found me hard to work with, but it wasn’t their fault or mine, I was frustrated by me and so where they. Teamwork worked for short spells, I worked best on my own and I proved that again and again, I couldn’t read me so it amuses me now that others tried to.

I think for the first time I started to understand what my life had been all about was a couple of years post diagnosis, by that point I had read, learned and reread everything I could about my friend who controlled my life. I could understand better my moods, my tears and my exasperation with not just me, but others. I had been so used to struggling until I succeeded, that when others just throw their hands up and went I can’t do it, I always wanted to hit them, I didn’t but if I could do something, anyone could. These days I know I am far more placid unless the pain is off the scale, but I know without a doubt that I am now calmer and far more able to deal with what ever turns up. It has been something I have clearly noticed over the years of being housebound, with all those stress of life away from me, I seem to be far more able to just dismiss things as not that important. A few years ago I would have had a hissy-fit about the state of the house, I can now look at the housework that is waiting to be done and quietly accept what I can’t do anything about. I don’t stress over not being able to do something, or once more loosing my balance. I don’t fell like I am going to explode just because my day isn’t going right, I just get on with it and I do what I can, when I can. In all honesty I can’t believe just how calmly I do deal with everything that happens, I know that Adam on occasion may get snapped at but he like me knows I really don’t mean anything by it. Most of the time these days I just get on with life, I have learned to accept what every is happening, even when the pain is extreme I show little other than in the way I am seeking comfort. There is no change in language, no anger or exasperation, I have learned at last that nothing other than slow breathing and waiting for it all to clam down makes any difference at all.

From it start right through to today, I know that I have managed to go through the entire range of personality that is hidden inside all of us. but what has surprised me the most, is just how much I have changed and settled down since I ceased to go out and about. There is something amazingly calming about accepting the fact that life has changed for ever and that if you let it, life when housebound is actually rewarding, the calmness that it brings is a joy to live with even when someone has switched the water off.