Please tell me what is so hard about just going to bed when you are tired? It seems to be something I am doing less and less when I need to and more and more because the clock allows me to. I have been pushing myself to at least stay awake until 9 pm, that way I have at least a couple of hours with Adam, but all to often, like last night I found myself sitting there watching the clock, wishing the hands to turn faster. If truth be told I wanted to go to my bed nearer to 8 o’clock, but at that point there were two things holding me to the settee, the second was the TV. I just don’t seem to be getting it into my head that I can now watch anything at almost any time, I have managed to get the message through my think scull when it comes to programs shown after 9 pm, but before it, I still feel I have to sit there and watch, just in case I miss something. I find myself all to often looking at the list of programs I have recorded or downloaded and wondering when or if I will catch up before the system deletes them. Is it me or is the stupid delete date, for a program you have loaded on to your hard drive, simply stupid? It has left me in the position that I now watch the ‘On Demand’ before I watch the recorded and they just pile up, giving me more and more reason to not sleep as much as I could or should. I so often look at my life these days and I see so clearly that I have replaced every pressure that I used to have through work with something else, be it the TV or what I do here on line. It is almost as though I have some need for a certain level of stress and achievement without which I don’t feel that I am functioning. I know I could sit all day on the settee, doing nothing else but watching TV, or I could spend the entire day in my bed, there is no real pressure on me to do anything. There is no one who stands over me asking for this or that in such and such a time scale, what I do and when I do it is because I want to, but still I have managed to turn it into a demand not a want, I have recreated the atmosphere of work, almost as though without it I just wouldn’t feel alive.
If you are going to win when it comes to living with chronic illness, routine is essential and I am not the only person who says so, all those I have met who are successfully managing their condition and their happiness, all agree on that one big thing, routine. If your day isn’t structured you start to drift and all to often do land up lying around making yourself feel worse and worse, as all you have is time to think about what it is doing to you and what you have lost. I think why I have structure my day the way I have is because I worked from home for several years, so it was a natural change for me to take the hours I worked and to replace them with the hours of writing and twitter. This, has become my work and I have also taken up the roll of demanding from myself a level of ‘work’ that means I am pushing myself all the time, just as I did when I was working. I have for a long time now known that I have actually taken it too far, I am putting too much pressure on myself and I need to change it, unfortunately to date I have failed to change anything that has had any great impact on my day and I know exactly why. I don’t want to admit that I am failing, failing to do what I have done now for 2 years. It is all part of the same circle that illness brings with it, you don’t want to admit that your health is stopping you from doing anything at first, but slowly you have to. You accept that walking stick, the wheelchair, the working from home and so it goes on, but every single one of those acceptances is really hard at first. Not being able to keep up with what I expect from myself now, is no easier than it was for any of those other steps I had to take. Just like fighting to stay awake for that extra half hour, I fight to do everything every single day that I have done day in, day out. I’m human, I don’t want to fail at anything or give up on anything, that allows me to be proud of myself. Illness strips you bit by bit, taking away this or that and you cover it up and move on, but eventually someone notices and you are forced to accept, being forced into to doing or accepting anything isn’t easy.
No matter how much warning you have that your illness is progressive and what that will eventually mean for you, you hold on to the idea that somehow you will be the one who makes it, that will manage to go so far but never reaching the worst case scenario. Every step that challenges your belief is as equally painful to take regardless what it is, having to use a walking stick took as much out of me as finding I couldn’t manage a zip any longer, what the step is makes no difference, they all hurt and you will fight not to take it. Only Adam and I now see any changes, but we don’t really talk about them unless something makes us do so, I know he is just as aware as I am that I don’t have a fraction of the ability I had just a couple of years ago. Some how I have found myself in a position were I know I have to make changes but I haven’t the slightest idea of how or what to change, or how to make it work. Change is really difficult to work out, as I said earlier routine is important, so what ever is changed, has to still be within a routine that I already knows works, but takes away some of the pressure that I now feel is building again. I guess it is going to be a slow process, which is probably a good thing.
I think to some extent we all make our own little routines and task lists weather we are in a job or not it helps give our lives a little structure and meaning even if it just means we can tick a few more things off just to get out of bed etc. I know that every week I have a little to do list which I mark and update every day to give me the feel of achievement when in actuallity I would have probably done the things without the checklist but it feels like I have something to show for my week I know it sounds crazy but it works for me 🙂 The human spirit encourages us to fight on not to give up and let our illnesses envelope us and to fight back and keep on going as long as we can. The adaptions and changes always have to be slotted into our routines which then becomes another tick in the list of things to do 🙂