All afternoon my diaphragm was playing up and the pain just wouldn’t settle, even when I went for my nap. I often find that lying down for an hour or so, totally relaxed, is enough for the muscles to settle. Yesterday, it didn’t touch it. I didn’t give up though, I carried out every trick I could think of, but by the time I was taking my evening meds, I was being driven mad by it. I went to the kitchen and sorted out what I had to take, plus helped myself to a small ramekin filled with olives. They may have started as a way of dealing with the horrid tasting med I was being forced to take, but I have grown rather fond of my evening snack. I found myself though sitting on my perching chair just staring at my meds. I had that horrid feeling that something was missing, but for the life of me, I couldn’t see what. When 45 minutes after I had swallowed my tablets, things still weren’t improved. Which I have to say, is really odd. It is rare for my 8 pm meds to not bring a huge change in pain levels, but there I was with little change if any. I decided that if I was going to get any sleep, I had to take a 10 mg booster of Morphine before I even laid down. I still found myself lying in bed, completely relaxed from head to toe, other than my band from just below my bust right down to my waist and, in fact, there was pain spreading even below that. My skin was once again feeling as though someone was removing it with ice. It wasn’t a temperature spike, it was more along the lines of it being alive, burning, tingling and hypersensitive to the tiniest amount of air making its way around the duvet, hence the feeling of ice. Finding myself still awake at 11 pm, was something i really didn’t want to do, but I was awake.

I landed up meeting Adam once again in the kitchen, I don’t know why he seems to find my moving around as some kind of trigger to dash into the kitchen. I was heading in there to have a cigarette, something that I know often is enough to relax me even further and sleep often follows. He of course, wanted the light on as he was there to fetch the last slice of rhubarb pie and cream he had bought himself as a treat, I was heading in there with the goal of sitting silently in the dark and continuing my path towards sleep. I found myself sitting there with my sleep mask on while he clattered around me and kept trying to speak to me as well. Strangely enough, when I have my earplugs in, I can’t hear what he says. A rather odd and stilted conversation always ensues, with me saying “I can’t hear you” more than anything else. By the time I was back in bed, I was despite making every effort to relax again once he was gone, rather wound up. Lying there once again unable to find that elusive sleep, I felt little positive effect from my wanderings. 1 am appeared and once more I was sat in the kitchen. This time I was sat there partly waiting for my second booster of the night to kick in and partly getting my nicotine fix. Suddenly my brain had one of those moments where it found an answer to a question asked long ago. There had been something missing from my night time drug routine. I hadn’t taken my Amitriptyline. That was why I hadn’t felt that relief I was used to feeling in that hour before I go to bed. It was why all my nerves were screaming at me and amplifying my pain levels. Last night I was far from the first time I had done this. When my brain comes up with a block like that, where I know something is wrong but it’s not going to tell me what, there is nothing I can do about it until it decided to be my friend again. It goes without saying that I took it straight away and then sat there quietly in the dark letting it start to do its job. Sleep came within the next hour. No more lying there trying to block out my pain, the worst of it was now at a level that I could bear without it stopping me from sleeping.

I don’t know why Adam didn’t come with me into the kitchen to sort out my meds. For some reason, he didn’t move and I didn’t ask him to. I guess both of us wrongly thought, well what can go wrong, it’s the same every night, routine will see me through. Somewhere in my brain that evil little demon called PRMS saw an opportunity and took it. It almost feels like from time to time it finds a situation like last night and it has to remind me of who is really in control. I know I have been saying it for a long time, but neither of us can trust me to do anything any longer. I used to be fine, I had my routine and I stuck to it. This is just another example of how that old routine has fallen into a mess that no longer works for me. Routine used to be enough for me to lay out my tablets correctly. It was done the same way every night and it didn’t go wrong because it was automatic. My brain fell apart and I started to need Adam there to check what I was doing. He doesn’t come with me every night, but often enough for his influence to keep me straight, well at least that was what I thought. I haven’t skipped a single med for ages, it had been working. Clearly, it went horribly wrong last night and the result was I lost 4 hours sleep. I know I was totally resting, but I wasn’t asleep and I am going to pay for that today. I may have had another six and half hours perfect sleep, but I’m missing four and there is no way that my body isn’t going to take revenge.

Mornings like this, where I am sat just waiting to see what nasty trick is going to come next, are actually hard. I know, because of experience that I won’t get away without something being the payback for getting just one thing wrong. I don’t know what it will be, but it will appear. It’s like my own personal sword of Damocles, it’s hanging there threatening me every second until it falls. There will be pain or sudden fatigue that will end my day abruptly. End it because the rest of my day will be stolen by it, filled by it and nothing else will be allowed to happen because of it. I guess that it is part of the reason why I felt the need to take my routine and make it more flexible, as days like this are happening more and more. They can be caused by a million different things, but all of them are normally trackable back to something I have or haven’t done. We don’t have this medication thing under tight enough control. I am honestly right now wondering if it might be a good idea to ask Adam to take on laying out my meds both morning and night. If he were to measure out the liquids and line up the tablets then at least we would both know that they were correct and taken at the right time. In the last year what we have been doing was for Adam to have an alarm set to ensure that I take them at the right time. He would come with me, some days measuring them out but really just there in the same room to see that I had taken them and that I hadn’t just gone into the kitchen and returned without doing anything. Yes, I have done that in the past. Tightening things up might just be the point that we are at now, at the very least it is time for us to consider it.

Nothing is ever going to be simple again. I have known that one for a very long time, but knowing it and accepting totally are two very different things. As my life has been fragmented, chipped bit by bit out of my control and capability, accepting anything that means I am admitting to yet another flaw that I can do nothing about, doesn’t get any easier. You would think that it would, but it doesn’t. It was easier if I am honest back at the beginning as what I was giving up doing, were all things that had become like chores to me. My love of doing the housework was replaced at first by something that exhausted me and made me ill, handing it over was a plus. Everything that I gave up doing was because it was making my health worse. Now I am giving into and giving up things that I can count on my fingers as being things I do, just me, no one else. There isn’t that much left and that means they are held onto so tightly that prying my finger off them is hard for both of us. It doesn’t matter how many time you try to make it alright by telling yourself that you knew this day would come, knowing it isn’t enough. Which of us, either Adam or I lays out my meds, does it matter, does it really matter? Oddly, yes. Do I want another night like last night and another day of being iller than I need to be? No. Does that change anything? Oddly, no. Make logical sense out of that if you can.

Read my blog from 2 years ago today – 13/07/13 – Well the stick is for walking

Last night I was sat on the settee, leaning back to the actual settee cushion for a change rather than a scatter cushion, despite the fact that all the windows were open and the blinds were moving there was no breeze. My lungs were heavy and the pain around my diaphragm on every breath made me…….