Seventeen Hours…

“Nothing fixes a thing so intensely in the memory as the wish to forget it.” Michel de Montaigne (1533-1592)

If I’m lucky, I get about four or five hours of sleep a night. To get even that takes a dinger of a sleeping pill to reroute the pain to Never Never Land for a short while. Even then, I’m subjected to some pretty horrendous nightmares, one of the possible side effects of this medication. Even unconscious I’m unable to escape this situation.

Being awake at 4 am has always bothered me, there’s just something especially unsettling about it. To dodge that hour, I stay up every night until at least 1 am, take my sleeping pill and hope that I make it to at least 5 am before waking. Almost always waking up on the edge of a dream that has upset me, almost always a replay of disturbing events that have happened in real life over the last two years. Very seldom does my illness creep into these dreams, for the most part I’m able to walk and do pretty normal things. Just under abnormal circumstances.

These days my level of exhaustion hits new heights. I’m not able to nap due to the pain, so I lay quietly trying to think of pleasant things. More difficult to do as the weeks wear on. Being more or less confined to bed leaves far too much time to think, despite my best efforts to occupy my mind.

For the sake of argument, let’s say I get five hours of sleep. A good night. That leaves nineteen hours. Most days I have a visitor or two (friend, volunteer, nurse, Personal Support Worker), visits might add up to a couple of hours.

This still leaves about seventeen hours a day when I’m on my back (or in some contortion that I feel a bit more comfortable in), alone in my room…time that has to be occupied. I don’t have cable, so I listen to audiobooks and on-line courses, watch DVDs that have been loaned to me, try to find something on Netflix that I’ve not already seen. It’s around this time of the month that I have to slow down the online access as I get too close to my monthly bandwidth limit, leaving me even more time to fill in creative ways. Let’s not forget the insurance issues I wish I didn’t have to deal with on a regular basis, I just don’t have the energy for it. And sometimes all I can do is to push away the attempts at distractions and bear down against the pain.

I had a thought provoking conversation with a spiritual counsellor this week that was of help –the reality is that this really sucks (his words!)

We discussed quality of life. There truly isn’t much left. I’m grateful for the visitors, emails and phone calls. Grateful for the social assistance that’s been made available to me in the form of volunteers, nurses and PSWs.

Being hooked up to oxygen, having to limit time on my legs to about ten minutes a day (preferably less if I can get away with it to lessen the aching at night), not being able to escape these four walls, not being able to prepare proper meals for myself. All more frustrating than I could have ever imagined when I years ago thought about what the later stages of this disease might look like. Who would have thought that I’d blister at the top of  my ears from the oxygen tubing?

For the next few days I’m able to put this aside. My dearest friend is flying in to be with me, to help me with some lingering loose ends. The apartment will be full a good part of the time with other friends, my daughter will be home too (an important note for anyone who’s had the thought, it’s at my insistence that my daughter is away at school. We’re in agreement that it’s the best way - and our way - to go forward at this time). We’ll laugh, we’ll cry. And then laugh again.

But when the next few days have passed, I need to look at rewriting the header to this blog. The words (edited as appropriate a few times)written almost four years ago have become a lie.

Far too much time left over to try to forget things that insist on fixing themselves in my memory. Not a terribly productive use of my time, but it’s the reality that is.

Dying  alone slowly and painfully is something I wish nobody had to go through (and I know how much the people who care about me hate seeing me like this too, God bless them for their prayers for a more peaceful end to this). I have to take it hour by hour, seventeen at a time.