Something’s, just make you smile

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying┬ábecause I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour……

 

 

 

Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.