Last night felt as though it was never going to end and when the alarm clock did herald the official start of the day, I just wanted the night time back. The discomfort I had been in since Friday had left me with no option but to step up to the stronger laxatives prescribed by my doctor, I knew before I even headed to bed last night that the night wasn’t going to go well, as it was night two and the results of the second dose is always the same. I had spent the majority of yesterday switching position and searching for the wonderful thing that I knew there wasn’t the slightest chance of, comfort. Getting into bed was bad enough as it means using those muscles in my stomach that were already straining and locking into spasms and were passing on their warped messages to my diaphragm. Go and try it right now and see for yourself just how difficult it is to sit, swing your legs onto the bed and then lying down without using a single muscle from your ribcage down to your hips, add in the pain and the picture isn’t a pretty one. I lay there longing for sleep but having to control my breathing as anything beyond the shallowest breath just wasn’t pleasant and meant sleep wasn’t going to come easily. I have been using relaxation tricks for years, not only do they let you drift into sleep, but they are one of the few things that allows me to cut out the chatter for a while, as the conversation has to be held on the subject of rest and which muscle I want at that second to go to sleep. It doesn’t usually fail, but last night it did, last night there was just too much pain and too many breaths that hurt, for me to be able to control the rest of my body and keep my mind fixed on what I wanted it to do.

Pain in the day time hours is something that anyone can deal with, we take our tablets, we distract ourselves and our days pass, one after another, with their differences but somehow they all feel the same. In the day time, no matter how bad it gets there is always something that takes us on, hour after hour passes and the pain comes and goes with them, we have things to look forward to, points in the day which we mark as the next one to get to. Time to eat, time to do this or that, the time we have company and the time we know we have to get through alone and we keep going, we keep going not because we don’t have a choice, but because we choose too. We have those good days the days where pain isn’t our main issue in life, it will be something silly like a tick that drives us mad, or we are filled simply with the joy of being alive. Daytime is easy for everyone to survive, ill or not, but night time, night time even when we are not in pain, night time without sleep is just wrong and not only wrong, it is painful in its own way as we know what will happen if we don’t sleep. I have got used to the fact that I can no longer roll over or even balance on my side, that going to bed means that I am there flat on my back with nowhere to go until it’s time to get up. But when you can’t find sleep, the one thing you desperately want to do is curl up, but there I am stuck flat on my back with nowhere to go, no position more comfortable, because there is no other position possible, all I can do is lie there like some kind of dead plank. When pain drives you to distraction, the one thing you yearn for is comfort, the chance to ease what is happening to you, but the only options are to stay where you are and hope sleep takes you or get up, where there is no chance of sleep at all, so I lie there motionless and hoping.

Waking at 4am told me that I had been asleep, somewhere along the line sleep did win but even at that point I was finding it hard to believe I honestly had been asleep. It was just the same at 4am as it had been at 9pm, nothing had changed other than the fact I was aware of being awake rather than aware of trying to go to sleep, whatever had happened in between seemed to have vanished as though they were only a second apart. Despite all the well measured drugs, prescribed by those experts who don’t live this way, the pain has won through and I was once again conscious of it and that meant I was awake. I pulled myself upright, my body was screaming that it needed to move, it needed to be anywhere other than flat on my back, so up it was. There isn’t much to do in a house at 4am where the only person you have near you is asleep and you have to move quietly not to wake them. Even this has now become a routine, when pain wakes me, I get up, I take a pill, go to the loo and head into the kitchen where I light a cigarette and sit in the dark, waiting to feel the edges of the pain dulling. I used to get up and leave my sleep mask on the bedside cabinet, waiting for me to return, but these days I take it with me and for good reason. I have walked around this house in the dark for years, never switching on a light as there really is no need, our home like almost every home in the world these days is peppered with LED’s glowing either red, green or blue, waiting for their next command, they alone light my way, but they also pierce their way into my eyes. I don’t know what it was that made me think about it, but the other week I sat in the kitchen with my eye mask on, cutting out the lights and glow of my cigarette, to my surprise I discovered that going back to bed and back to sleep, seemed to happen with so much more ease. I already knew that total darkness, protection from the steady glowing alarm clock and light that sneaks in above the curtains brought a better nights sleep, but I never thought that those tiny specks of light could make such a difference, trust me they do.

Last night I lay there still in pain, booster pill or not, my mind racing over old posts I had written about my fear of finding the doctors when I eventually see them, insisting that I spend some time in hospital with all the issues that would bring. The chatter kept coming and coming, I slept, I know I did, but it wasn’t real sleep and with every pain that my mind felt, more chatter filled in around it. I even looked at the clock several times, I was hoping what remained of the night away, yet at times it was just minutes, others over an hour, but it was still there, night time and pain. I thought that I would find relief in the sound of the alarm, but all I found was more of the same, but this time awake and the pain was getting worse and worse. Adam was just out of the shower when I found myself flying to my feet, once more I was feeling spasms so strong that they brought tears to my eyes and this time I knew there was going to be some relief. No matter how much pain my PRMS puts me through, for some reason this is the only pain that I feel is unjust somehow, how can something as natural as going to the loo, actually be like this, how is it right that I have to lose half of one night and then almost a whole nights sleep every week and three days of discomfort, to achieve what everyone else manages without the slightest thought. Four visits to the loo, each as painful as the last has at last brought me to the point where I knew I have a chance of peace for a few days, before it all has to start again.

Pain in the daytime no matter how bad is somehow easier to deal with, but at night, at night it is a hell that there is no escape from, nowhere to run to and nowhere to go. Night time is the space in our lives where we are supposed to heal, to renew and regenerate, to be ready to deal with what the day holds, but when you don’t get that, when there is no rest, then the daytime becomes something else, they lose their fun, their sparkle and their specialness, they are just more hours of pain. Tonight I will sleep, today is just another few hours to go through so that I can find the sleep that I should have had already. Tomorrow will be a better day.

Read my blog from 2 years ago today – 31/03/13 – Summertime, sleeping time > http://bit.ly/ZuX4r1

Now full of wedding cake life is settling back into normality, the proof? Adam is snoring on the settee! lol I have to say that last night after they left I was so exhaustive, I sat sort of not really with it or with anything else either! being in that sort of limbo land is somewhere everyone knows well as it is the point we go through as we fall asleep, I seem to have learned how to go to that point even when I am sat talking or watching TV……