I have for years now, taken enormous pleasure in simply going to bed. It was the one place where my body was cocooned, which meant that the twitches and mini spasms didn’t shudder through my entire body. Even the next stage up, on the scale of spasm, seem to be reduced in their pain and their worst effects were held at bay. I have been lucky for so many years, in the fact, that sleep always appeared quickly, and I slip into a world where pain doesn’t effect me in any way similar to the day. Bed and sleep, have became my joy in everyday life. From just reading those few lines, it’s clear that something has changed, something is now intruding into my rest. In the run up to Christmas, I have written about the bizarre increase and new areas that sensations have been running wild. Yesterday was the first day, they found their way into my rest, in a way, that was somewhat disturbing. It’s normal when I get into bed that I will have some part of me, tingling or filled with pins and needles. Since I have been using my wheelchair, it is my arms, where it was once was my legs. Their upset, was clearly due to the fact that the muscles had been recently used, no awards for working that one out. It is also normal, for my diaphragm to be producing pain, and the change from vertical to horizontal, normally, triggers slowly tightening intercostal muscles. All of which, I can slowly manage with relaxation and drift into sleep, or just rest for a while if that was my goal. Yesterday, both in the afternoon and at my bedtime, lying down, didn’t dull anything, it sent my entire body into bedlam.
I have felt similar things during the day, but never quite as complete, or as intense before. My entire body, and I do mean entire, as I couldn’t find any part of me that was silent, everywhere was filled with different sensations. You name it, other than lightening shots, there was some part of me that was feeling it. The majority was my old friend numbness, followed by tingling, pins and needles and pain. I was in bed for an hour during the day and never, once, managed to shut it all down. I relaxed as much as I could, I worked on taking each part, past relaxed and into what I call sleep, basically, so relaxed that it feels as though they are no longer there. My success rate, for the first time in ages, was poor. I could turn the intensity down, but I couldn’t find any silence and definitely no sleep. I have over the last few weeks, become used to this same problem when I am up and about, but then, there is, at least, distraction. Distraction is something I find effective, even if it’s only an effect on my conscious brain. When you are lying down, in total darkness provided by a mask and with earplugs in, there is no distraction, the whole point of my accessories. Distraction means lack of sleep, so they have to be removed. Also, the reason, that I work through my normally highly successful relaxation techniques, it removes the distraction of my body. It didn’t matter in the afternoon, I wasn’t looking for sleep, just rest. Yes, it meant my rest was more limited than usual, but I did still rest.
Night time was a totally different story. I don’t know how long it took me to find sleep, as when I woke at 4 am to go to the toilet, I couldn’t remember sleep, just my voice constantly saying “relax”. I should have woken with silence everywhere apart from the desperate message from my bladder, but even then, the silence wasn’t there. It was the exact same story when I returned to bed, and then when I woke once more at 8 am, still with only the memory of my voice in my head. It now over 24 hours, since I last remember not have wild messages from every part of me, bombarding my brain. There has been no peace, no time when I haven’t felt the desire for a silence, that just can’t be found. I am growing more and more tired, I know I must have slept, but the benefit of any of it has been lost. My plan, of getting more sleep, seems to be further away with every hour. Right now, I want nothing more than some deep refreshing sleep. There is little point in heading to bed, little point in lying down, when nothing changes, nothing goes away. I am pushing myself to stay awake right now, as I have hope that when the point of total exhaustion is reached, which isn’t far away, sleep will win.
At first, despite the annoyance factor, I found this sensation display, amusing and fascinating. I was beguiled by the range and constant changes all over my body, caught up in the desire to understand. That has worn off. All I want is, a short spell of peace, I’m not even greedy, it’s not like I’m asking for it forever, just when it’s time for sleep. Just to take a step backward, as I can deal with it when I’m awake, we can all deal with anything when we’re awake. The maddening thing is, that I am almost sure that it was the overactivity of the last couple of days, that brought it on. Now, it is the cause of overactivity, because it won’t let me rest. There are times when my health really makes me feel as though I am losing the plot, today is one of those days. I have always done whatever I can do to work with my health, but just occasionally, it makes it impossible to do so. When it takes over in this fashion, you just feel floored. I swear that somehow, every tingle, every spear that prods at me, and every area that feels dead, is draining my energy even further.
I know I will get some sleep. I will be so far past just tired by the time my afternoon nap comes around, that I will sleep, maddening sensations or not. Right now, I have things to do, I have so many things to do. Maybe, I won’t wait, just tidy through what has to be done, then go to bed. Blessed bed, my joy in this ever annoying world. Please don’t take that one thing away, at least not now.
Please read my blog from 2 years ago today – 28/12/2013 – Painful answers
Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted…..
Pulled me in and jarred loose emotion, the kind with potential to scare because you know you’re helpless in the face of the thing to do any thing. A person dangles from a rope you cannot reach and pull up. Helpless defined – when you want to reach out, help, and cannot. The painful beauty of being human.
Pulled me in, jarring loose emotion, the kind with potential to scare because you know you’re helpless in the face of the thing to do any thing. A person dangles from a rope you cannot reach and pull up. Helpless defined – when you want to reach out, help, and cannot. The painful beauty of being human. Scary some times.
I am so sorry. It seems so many of us with autoimmune diseases are having a time with them this winter. I too, have even felt symptoms I haven’t felt before, or at least in years. I hope that my blog encourages you and helps, even if it is just to make you smile. Sometimes just knowing there is someone out there that gets you is all one needs. Thinking of you and keeping you in thoughts and prayers dear reader. Hang in there.
There is one thing that we all should be more grateful for, the internet. I’m not sure how people with conditions like ours actually managed 100 years ago. If we are luck in anyway at all, it is in the timing of our birth and illness. We at least know that we aren’t alone, and there are many people who understand just what we are going through.
This winter does appear to be hitting many far more harder than usual, I just wish I could piece together what has changed for so many different people.
Thank you for returning my follow, I too hope that you will find things in my writing which might help you too. That’s another glory of our time, we can share, what once we all had to learn alone.
Take care 🙂
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