Pain took hold of me yesterday afternoon and destroyed my plans for the rest of the day. I had been going to have my nap earlier than normal so I could then have a shower and wash my hair, I have to shower no later than 3:30 as after that my hair just isn’t dry enough for me to go to bed for the night. My hair is now down past my waist and if I try to dry it with a hair dryer it always must turns in the fluffed up mess that is uncontrollable. Adam has offered several times that he could dry it for me, brushing it as he went to stop it frizzing up and as his hair was also past his waist when we met, I know well enough that he does know how to care for long hair, but it is one of those processes with more potholes in it than you might see on the surface. My scalp has always been really sensitive, even the washing process can spark off shooting nerve pains, I have managed over the years to find a process that normally gets me through with little to no pain, someone else playing around in that routine just fills me with dread. I managed to go to bed early enough and had my timer set to wake me in 2 hours, it did wake me but I didn’t get up, it was gone 5 pm when I realised I had slipped back to sleep and it was too late for my shower, not only to late but I was in too much pain to face any of it at all.
My back and upper thighs were causing so much pain that even with the mattress elevator the process of just getting myself to a sitting positions was excruciating. I had used the elevator to bring me as upright as it could but there was still that tiny bit that required the use of my so called muscles had to actually work to get me out of the bed. To be honest I had the feeling of being around a 100 plus years in age as I was sure no one below that age could possibly find such a tiny action so demanding. I don’t know what triggered it but even my arms weren’t wanting to take the strain by pulling on the bedding as their choice was to do nothing. The first half of the day everything had been as fine as it ever is, but after what should have been a time of rest and recovery, I was in a worse state than I had been before I went to sleep. It took me a while to make it to my feet and actually manage some sort of resemblance of actually being a human, but I was ready to lie down again before I made it past the bedroom door and into the hallway, clearly my shower was out of the story. Even the simplest things are often the most difficult and the most overwhelming. It is often as though your body has been switched suddenly with someone else, one second you are managing well and the next, well you can’t manage anything and that was how the day remained. I found myself once more sitting here at my PC but not actually connecting with it most of the time, even a simple game of “Freecell” was like sitting final exams at school, punishing as your are sure you are meant to know the next move.
What should have been the second half of my day, turned into sitting like a zombie on the settee counting down the minutes until I was free to once more had to bed. It’s like that sometimes, it’s not that I am really happy to have a chance to spend sometime with Adam but I don’t have the energy. A while ago I set myself a time line that I don’t allow myself to break, I am not allowed to go to bed before 8pm. I’m not sure if that is a good thing to do or not, but I just feel that if I didn’t have guide lines well I would land up sleeping at stupid times like through out the day and finding myself sitting up awake in the middle of the night. So the latest I sleep in the morning is 7:30 am and the earliest I can sleep at night is 8pm, I allow myself a maximum of 3 hours during the day. The two things I hate the most when it comes to my life these days is pain and sleep, they each have so many variations but worst of all they normally come together. I spent my evening sitting mainly with my eyes shut listening to the TV and talking to Adam, but all the time I was in pain that meant I didn’t know exactly how to sit, so once more I was switching and wriggling not just looking for comfort but trying to stay warm as well. It’s hard sometime when for once I have found somewhere I can be comfortable and then some other part of me starts screaming at me and demanding that I have to once again move. Mix into that a need to sleep and a brain that is just about managing to bring a few words together before giving up again, even my eyes don’t want to play the game any longer and just close because it is easier than having to put in the work of seeing. By 8pm I was beyond any desire of staying awake or any ability of doing so either, I had earlier turned on my electric blanket and I have to admit that was an added draw, comfort, pain reduction, sleep and warmth. It still sounds so good.
7am and I woke bursting to go to the loo and found once again that I was in exactly the same position this morning as I was yesterday afternoon. The added pressure of having to get to the bathroom did make it just that little bit more interesting shall we say, but other wise the same. You don’t realise how much you actually use your arms, until the point arises that they don’t actually really work, just getting up, putting on a nightdress that just simply drops on over your head before swinging the door to allow you into the hallway. As I stepped in to the hall my arms where just hanging there, dead and simply a weight dragging my shoulders down, by the time I had made the 4 steps to the bathroom door which was open I didn’t know how to lift them at all. It is really strange standing there looking down at arms which should be moving and where needed to close the door behind me, it actually took only seconds to close the door behind me but how they moved I still don’t know, as those first couple of steps towards the bathroom, I couldn’t move them at all they were just like lead and movement was impossible.
I don’t know how you are meant to judge your life, or what constitutes a life worth living, or how you measure a day, what hours you are supposed to be awake or asleep, or if there is anyway of making sense of the hours you are awake. All of this is now my life, I can’t change it and no one can make it any different for me, all I can do is what feels right for me at the time. I would love to be able to make up a planner for the perfect day, but I know without doubt that my health would screw it up and through out of the window before I had even had the opportunity to test it out fully. I wonder if anyone would notice if I went to bed now…..