I got up this morning actually really looking forward to what I expected to be a straightforward day as yesterday afternoon, Twitter eventually fixed the issue allowing me to log in and be part of the community again, rather than just an observer who was only allowed to tweet if I scheduled it for a later time. Everything seemed fine, I could follow, like, favourite and tweet, perfect I thought, then I tried to see who had interacted with tweets, only to find some bright spark developer has changed the program as they often do but has manage to make it such that you have no idea who likes or favourites anything, there is just a total. There is a workaround using other platforms, but it is so slow that it just isn’t practical. I really wish that developers would leave things alone, I know they would be out of a job if they did, but to me, a good developer makes changes that helps people, not annoys the hell out of them! I put a tweet out asking to be sure that it wasn’t just me and at least it is not this time.
The more I have thought about yesterday’s palaver over my hospital appointment, the more bizarre the whole things seems. I have like every person out there with poor health have had to rearrange hospital appointments for one reason or another, just occasionally I have totally cancelled appointments because the appointment took so long to come through that the reason for it has healed, just like yesterday, but not once in my life have I had the hospital phone my GP and my GP then call me, to push me into rearranging it. I can’t help but get the feeling that they really do think there is something more there than just a difficult to heal ulcer. I know the mouth is supposed to be the quickest healing part of our body, but as I know all too well there are always exceptions to the rule. I guess I will find out when we go there in a couple of weeks time, the date actually works well as Adam is off work that week, so there is no need for him to arrange emergency time off. Why is it in life when you think you are doing the right thing by not wasting other peoples time and money, that that right thing turns out to be totally wrong.
It seems that this week is doomed to just be wrong, everything even the little things in life just don’t seem to be working correctly. Adam thought last night that he would be helpful and rearrange the bed before I went to sleep, I came into the room to find him moving my pillows, but I could see he had done something else but it didn’t click until I got into bed and lay down. He had shifted the mattress by a few inches, it has a habit of working its way over the edge of the frame but he had moved it another 2 inches past that, so when I lay down, I was on the edge of the mattress, with pillows no longer shaped to my head and the edge of the mattress topper sticking into my arm, everything felt wrong. I don’t know what it is about beds, but if they are not just right, the whole purpose of being on them is totally lost. I know I do have a bit of the princess and the pea thing going on with my body, but even before that started, beds just have to be right. I know it is one of the reasons I hate having to stay in a hospital, that along with the noise of other people, but I also think it is part of the reason I don’t like going away on holiday. There was no way I was going to be able to sleep, so I had to get up and undo everything he had done, then thump to submission my pillows, before climbing back in, trust me, my muscles don’t like that kind of excursion, at least I was just seconds from sleep.
I have a feeling that if you asked the majority of people with either Fibro or MS they too would tell you that our beds are the most important thing in our homes, not just because we spend so much time in them, but because it is often the only place that we can find comfort and some peace from the pain. I know that there are days when the constant thought in the back of my head is a counting down clock, ticking down the minutes until I can head back there, it is like some kind of womb, the only thing it doesn’t give me is food. I was the person who never stayed a second longer in my bed than I absolutely had to, someone who saw going to bed and having to sleep, as more of a punishment rather than a slice of heaven. Now, now the second I have done what I do in my daily routine and once I have spent a couple of hours with Adam, the only thing in my head, is bed. I don’t understand how though it is that I now seem to have this switch inside me, that regardless whether I think I really need to sleep or not at night, within seconds of going horizontal, I am asleep. In the day, well not always, but even if I don’t sleep I can lie there just enjoying the fact I am motionless, in a dark and warm place where my body is supported and my muscles can do what they want the most, to rest. When my lungs started playing up, I went through a spell where I found sleep not such a great thing, having my lungs feeling like someone was sitting on them, well lets say it was enough to take away the gloss. These days I no longer lie flat, the elevator that was fitted to help me get out of bed, turned into a huge blessing as it means I can sleep with the top half of me raised slightly, it isn’t a cure, but it sure helps.
I know after reading that that those who don’t have my conditions will be wondering why I don’t just stay there if it makes such a difference, why don’t I, well that’s easy, I don’t want to miss my life. I know my life isn’t the most exciting or the most glamorous, but it’s the only life I have and I want to make the most of it, not spend it with my eyes totally shut, I miss enough as it is. That was the simple answer, there is a deeper one as well, the fact is the time will come when I have no choice, choice is one of those things that we all have and most of us think nothing of it. We make choices all the time without even knowing we are, will we take a sip of drink now, or in a minute, shall we wear this outfit or that, those shoes or the other ones. Choices fill every waking second of our lives, but just as your health goes, so do our number of choices and more importantly our free will. It doesn’t matter any longer what it is I want to do, what matters is what I am capable of doing. I can right now make the choice to be sat here doing what I do, I am not going to let go of that any sooner than I absolutely have to.
Please read my blog from 2 years ago today – 20/10/12 – Peace is returning