For the second night in a row, I went to bed early and I slept like a log, normality for me as I it only takes my head to touch the pillow and I know nothing until the alarm sounds. I count myself as so lucky that sleep is my peaceful escape from everything, yet I can’t help equally to curse it for taking so much of my life from me, so many hours wasted and gone, without the slightest memory of even one. I know I must dream, but for me, it has always been the case that I just don’t remember them unless something really odd happens. My hours of sleep are like someone just switching me off, then eventually on again many hours later. It doesn’t matter how many times I tell myself that my body needs that sleep, going from a person who used to sleep maybe 6 to 8 hours a night, it was and still is a major adjustment to always sleeping at least 11. I constantly wonder what would happen if I switched off my alarm clock and just let myself sleep until I woke naturally, I don’t want to try though because I know that it would screw up my routine and there is always a price to pay for that, but I can’t help wondering.
I have had this constant feeling now for years that I am running out of time, there is just never enough hours not only in a day but in my life to do the things I still want to do. This damned illness steals more and more of that time as it has worsened, slowly it has made me sleep longer and longer each day, it is only time before I can’t fight it and I loose another hour out of each 24. Last night Adam and I had a stupid conversation about the TV programs we watch at night and just how much of our lives are taken over by the TV in general. While we were talking I admitted that if it wasn’t for there being programs on TV that I wanted to see, I would probably go to my bed much earlier than I do. To a certain extent that is true, but I know if I did go, I would feel terrible about it, not because I would be missing the programs, but because I would be missing the time we have together. This whole subject has become a real battle for me lately, I don’t know why but I keep finding myself sitting on the settee, feeling totally uncomfortable and in more pain than any other place I sit or lie, just wanting to go to my bed. It doesn’t matter how much sleep I have had during the day, I spend nearly the entire evening fighting between my need to go to bed and the fact if I do, I will not be spending time with Adam.
Like any couple, our time together is limited by the fact that Adam has to work, I am at least here when he comes home from work, but I am always tired, even during the day, so my conversation level and enthusiasm toward talking isn’t always what it should be. I constantly feel as though I am being pulled into small pieces, all lacking in energy, but all trying to do everything I want and need to do. My focus these days is on getting everything I want done online daily completed, during the week that is easy and done without any guilt as I am alone and he is at work. During the weekends, even thought he sleeps through every morning, I have a guilt that I am not putting the energy I have, into making the time we have together as good as it possibly can be. It doesn’t seem to matter what day of the week it is, the time when both of us are here and awake, I am always tired, always wanting to sleep and that makes me feel bad. I don’t know when I last really felt awake or when we last were together with my brain actually keeping up with what he is saying, rather than struggling because it just doesn’t want to keep up with anything.
Living with the sensation that given the freedom to do so, you would rather sleep than do anything else is a battle in itself. I fight daily to just write this, send out my tweets and so on, that little sliver of energy I have has already long gone, I am now in that zone where I feel as though I am running on empty, that is the feeling that will be with me for the rest of the day. I feel as though I have used up the little bit of me that is here daily, not doing the one thing that is actually the most important, spending quality time with Adam. The quality bit seemed to leave long ago, all that is left is a shadow of the person I was, I have little concentration, little emotion and even less energy.
We married in 1999 and for 13 years of that time I have been ill, seriously for 9 of them, so I know that Adam knows all of this, but it doesn’t make it any easier for me to live with. When you marry although you vow to look after each other in sickness and health, no one really believes that that sickness will arrive and then last forever. The pain I live with is personal, the difficulty I have with walking, or cooking, or bathing, or any other physical actions is personal, but total exhaustion isn’t just personal it invades both of our lives, every second, of every minute, we have together, I am exhausted. It may be stupid but I don’t feel guilty for being ill, but I do feel guilty for being tired, but when is illness ever logical, when did illness ever respect love, never.
Please read my blog from 2 years ago today – 29/03/12 – Friendship prt2
This morning I discovered that my daughter like millions of others including myself is facing redundancy. I feel so powerless to help her in any way, with her living in San Fransisco it is hard to know what I can do. I am not at all aware of the laws in America but I do know they are very different to ours so I don’t even know if they have to make redundancy payment or if it is just a sorry goodbye. The company are moving their operations to London and as she has a UK passport there is a chance that she may be offered a job over here, but she won’t know until tomorrow what, if any that job may be.
It seems so cruel that the wonderful person who set out to try and help her Mum get a job, by in her own time setting up web pages and accounts through which she tried to start a campaign, should now be facing the same situation. I know she has a life in America and a guy she in now living with, that to smash…..