It is strange how your view of things are changed when your control of your life has been to some extent taken out of your hands. It’s Sunday to the rest of the world, children enjoy it as it is another day without school, parents as they have time to spend with their kids, workers as it is a day of rest and Christians as it is a day of celebration, then there is me. Today is another few hours of life, another few hours of having what never seems to be enough time to do all the things I want to do. It is bad enough in life when we normally spend our lives chasing our own tails, but we usually manage to push ourselves just that little bit harder to finish that days today list, I never do. The fatigue of a lot of chronic illnesses is often the most debilitating symptom and one that if you haven’t lived through it difficult to grasp or understand. Fatigue isn’t just tired, it isn’t just what is a normal human condition of daily life, it is nothing like that end of day need to sleep, in fact fatigue isn’t usually relieved by sleep.
the most common answers when I am asked how I am is to answer simply that I am OK or I am tired, I wish it was that easy. If you are tired you go to bed you sleep and you usually wake up feeling better, sometimes you might have a few days in a row where you would rather be sleeping than having to work, your body needs sleep. When I say I am tired what I am really saying is that I wish I could stop, stop everything go into a comma state for a while not just sleep. My muscles feel permanently as though I have pushed them beyond any of the thing they are designed for, they are not just painful as pain isn’t part of this, they are exhausted and trying to make them move is as though you are trying to move through a world filled with wet cement and to make them move drains even more of the little energy they have left. I suppose that it is as though their batteries are running out and the recharge system isn’t really working any longer, when I sleep or rest they recharge but like all faulty rechargeable batteries, they don’t recharge fully. Take that situation and spread it right across all your major muscle groups, all those muscles are exhausted. Now add in the normal end of day tiredness and imagine feeling like that all the time. Oh I nearly forgot add in the knowledge that you are never going to get rid of this feeling and you will never again feel really awake or have any energy. That is a starting point for understanding what fatigue is.

I don’t have that looking forward to and enjoying a day of rest, there are no days of rest long enough, quiet enough or still enough as there is no recovery. It could be any day not just of the week, but month or year and I know when I wake it is going to be the same as yesterday, well at least I hope it is, experience tells me it will be the same or worse and worse isn’t good, as it never gets better. There are days though and these are the ones I now see as very tired, and they are when my brain joins in and feels exhausted as any other muscle, it is these days when I wish someone would put me into a coma and let me rest for a long time, I doubt it would help but I would love to try it. I have painted a picture for you in the only way I can but I know it looks black but it isn’t! There is a strange thing about being chronically and progressively ill that any well person reading this may well be a little surprised by, you get used to it, this is my normal! I no longer notice all those bits and pieces that I have isolated for you. I don’t think about them and I don’t pay attention to them any longer, they are my life as it is and if I did think about them well I doubt I would be sitting here typing I would either be lying in my bed feeling sorry for myself, or in hospital being held as a danger to myself. Even with something as physical and as impossible to ignore, it is still a choice of how you deal with it. I have learned to ignore, it was 30 years ago that I first felt this way and yes it came and went until 11yrs ago but I have lived with it that long, that it has become normal and I have to treat it that way.

So to you it is Sunday and it will hold for you what every is normal for a Sunday, it also holds for me what is normal for a Sunday, it is just for me then name of the day doesn’t matter.