Erratic control….freaky

Adam is on holiday this week so even thought he has started and not finished loads of little jobs over the past couple of days, he is now in his normal holiday position, snoring on the settee. I guess he will as always sleep through the day light and work on until dark, for someone who complains constantly about not liking dark evening, he doesn’t exactly make the most of the long awaited summers and it’s constant hours of day light. I have a plan today to not stay up too late, as I want to be able to make the most of the time that Teressa is here this week, I have at the minute a plan of sleeping 3 hours this afternoon and of going to bed no later than 8pm. It wasn’t until yesterday evening when we were talking about the progression of my illness that I finally made the glaring link to the point when my lungs started to go downwards at speed, it has to be when I suddenly started to sleep longer and longer hours. I can remember how at first that was the only thing wrong, there wasn’t pain or anything, I was just slowly getting more and more tired. I often laugh quietly to myself at a future image of not being able to actually stay awake for more than a couple of hours at a time, I laugh as I have that instant picture of me sitting trying to have dinner and just going to sleep instead. I don’t fully understand the mechanism which makes me sleep so much, but I really do see it as natures way of protecting me from longer hours of pain. I to date haven’t found anyone who has any of my conditions who sleep as long as I do, yes those with fibro have the same total inability to fight exhaustion and crash out without warning, but even they don’t sleep for so long, everyday of every month.

My mobility over the last few months has been rather steady and I seem to walk without too much difficulty in the morning, by that I don’t mean that I can fly around the house or anything, it’s just there is a clear and marked ease to my steps. As the day continues my steps become slower and more painful, a clear sign that I am heading to the point of needing to sleep and it is also the time of day that I will ask for aid from Adam more often. In the last few weeks I have noted a difference, I’m not sure if Adam has or not as I haven’t asked and he hasn’t offered the information, but even in the mornings my feet now often shuffle, not leaving the floor at all, not just because it uses less energy, but it also causes less pain. I can’t remember ever in the past finding myself sat here at 10am with a desire to not have to stand up for anything if I can avoid it. Me being me, I still make myself get up and get on, I don’t believe in giving into exhaustion until I have to, although I do work along the lines of energy saving and have done for years. I don’t know what is the best way of dealing with this at all, should I give in and do nothing, or should I fight it and keep going, hitting the flake out point earlier? It is pain that more often than not that actually makes me stand up, with the pain in my buttocks and down the back of my thighs, increasing the longer I sit here doing nothing, requires action. Standing and making myself move around a little often eases the pain, but once sat down, it start to return and build again.

The list of analysis points seems to be growing almost daily, I know without doubt that my MS is active and is moving with a speed I haven’t seen for a while, my body confirms this without any doctors confirmation needed. This entire year has been spent on a downwards slope, with the number of areas effected growing from numbness and pins and needles, in to sites of pain, pain that slowly then starts to grow. I suppose it was to be expected that my walking would also get worse, having long ago stopped me from walking any distance, I had at least been able to get around the house with it rest points and perch places meaning I avoided the pain when it was at it’s worst. Now it has become something that is there from waking onwards, the pain in the soles of my feet is now permanent, at best they burn at worst the scream at me, demanding that I don’t do anything, including standing or any other stupid thing a human might expect from their feet to be able to do. When I woke this morning the heals on both feet were in agony, I guess they were complaining that I had had them in a position that meant pressure was applied for some length of time, the back edges continued to scream at me for around an hour. How am I meant to win this stupid game? It is humanly impossible to not put pressure of some sort on at least one area of yourself, yes, I can shift about when awake, but I don’t seem to when I am asleep, so what am I meant to do?

Analysis constant analysis, but the worst thing is where I used to be able to find the answers I now often found none. Managing your illness is dependent on having some control, remove the control and the management is no longer there. It is as thought my body is now controlling me rather than the other way round, I am being pulled along a path that isn’t of my choice and isn’t in my control. I know that sounds really black and as though I am letting it happen, but believe me there is no compliance in any way what so ever where I can still get the upper hand. The change is simple, I don’t always have the upper hand any longer and the results are therefore erratic, being a control freak makes it really hard to get my head around and to accept this is just the way it is.