Would someone please cut off my hands and give me some peace! Please!! Sorry, I’m whining. It’s not like they are the most painful things I have ever had attached to my body, it’s just they won’t shut up and won’t give me even a seconds peace. I thought that the steroids would have done the trick, that today, they would have been as close to normal as they ever are, but their not and it’s not just them. You know that feeling, when you have just come inside, on a bitterly cold day and your skin is so cold, that it feels like it is on fire. Well, I have that from my elbows down to my fingertips, (worse on the back of my hands), my cheeks, lips and nose and oddly, at the top of my spine and on my front, are disks about the size of a side plate. Not so intensely, it is also inside my mouth and down into my stomach. Add into this, the fact that my eyesight is also totally screwed and I can’t see anything clearly. When I woke this morning I was so tired that all I wanted was to go back to sleep, but I had twitches so bad, that staying still was impossible, usually, lying down clamps my body still, but not even that was working. I gave up trying at 7:30 am. My body is still screaming out for sleep, I’m dizzy and I would just love to throw up. PRMS really sucks at times!
This flare isn’t showing the slightest sign of going anywhere. My doctor said if they didn’t work, that I should call the MS Nurses and see if there is anything more modern to try. I haven’t called them, but I have looked online and there is nothing. I have searched and searched, but not even the research papers showed a glimmer of hope.
Feelings and sensations don’t really sound like much, but they can be both distressing and overwhelming, especially as I haven’t had total peace from them for over a week. Everyone alive has had things like pins and needles, but in most people, they last maybe ten minutes, they’re annoying for the time they are there, then they are gone. This is far more intense than pins and needles, but try just for a second, imagining your living with them right now and they aren’t going anywhere. They have plagued you for a week and all that seems to be happening, is they are getting worse. There is no escape, nothing that will break them, even for a few seconds and you’re isolated inside this mess of constant sensation. Skin isn’t supposed to crawl, it’s not meant to be beyond alive, it’s just supposed to be there, doing nothing. When nerves are going mad like this, I have to admit, that I get scared by it. The past has shown me, that it can all too often, be a prelude to them stopping doing anything at all. This is a mirror of when I lost my hand, it too started with sensation, built to weakness and then died. For that to happen to two hands and my face, well I’m sure you can understand my fear.
Jane, my carer is due here again today, although I wasn’t even slightly aware of thinking about her coming, I suppose that there is a chance that her visit, is also playing a role in my not being able to go back to sleep. Everyone has been so supportive, so many great messages and people telling me that I am in their thoughts. I know that it’s not, but it still feels so stupid that something as simple as someone helping you shower and dress, feels so huge an event in life. I am beginning to get myself past the point of “I just can’t do this”, after all, we are three days past her first call, and I haven’t died.
In an odd way, Adam has helped me a lot with the whole process and he has done it without even knowing. Because I am struggling so much with life just now, he has been stepping in to assist me. I know that this might not make sense to some, but because my tremors are so bad, he decided on Thursday that he was going to try and stop them. I have written before about how physical contact between us is difficult, due to the pain I am in, the pain he thinks he will cause, and simpler things like the positions that I sit in and because I rarely sit still. I was in full flow of tremor that just wouldn’t give in, he suddenly slid across the settee, pushing himself as close to me as he could, then clamping his arm around me. He hasn’t held onto me like that, on the settee, for what feels like a really long time. I have to admit that at first, I was really uncomfortable with it. Not because of how he was holding me, but emotionally. It has been a long time since he has done such a thing, that anyone has really touched me, outside of goodbyes and goodnights. Physical contact in that way felt alien to me and I realised that that was part of the problem, no one has really touched me, in any way at all, for years. Outside of Adam, I haven’t even been touched by another human being for years, not even a handshake.
While we were sat there, things started to click together in my head. Without a doubt, I know the biggest thing with Jane coming here, is my loss of independence, but it was also followed abruptly, with the fact that no one has seen me naked, or even semi-naked, touched me or been involved in my life, outside of Adam, for as long as I have been housebound. Just having Adam holding me, opened up things I didn’t expect, and showed me, just how much I have really been isolated. As we sat there, I felt myself putting all of this together and I understood, even more, why I have been beating myself up, stressed to the max and so uncomfortable with this new phase of my life. Being showered by someone, brings together all those things I haven’t been involved in, or felt for years. Understanding is always the first step in living with anything. We have to understand before we can accept anything.
I’m not at ease about today, but I am far more at ease than I was on Wednesday. If I felt well, then I don’t think that today would be half as bad as the last visit, I just feel so bad and that is something I can’t change at all.
Please read my blog from 2 years ago today – 12/06/2014 – Somethings don’t change
It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be……