I woke this morning in exactly the same position as I did yesterday, right on the edge of the bed. For some reason, I had shuffled across the bed to a position that if had moved another couple of inches, would have tipped me onto the floor. Clearly my brain even when asleep had worked that one out. It appears that my sleeping self’s reaction to having the duvet tucked in so that my legs can’t escape the bed is to attempt to get the rest of my out instead. On both occasions that I have woken on the edge, it is the pain in my right arm that has actually broken my sleep. With my body so close to the edge there clearly isn’t room for it on the mattress and just hanging off the bed causes pain as it would for anyone. I suppose the good thing is, is that I didn’t actually fall out, but I am now left with a choice. Do I want to be woken with pain in my legs and back or pain in my arm? I guess the arm wins or is that loses, as the area of pain is so much less.

I landed up pushing myself too far yesterday, but it was my own fault for not having enough brain power to work out how many hours there are in my day. I had intended to start doing some baking at around 11:30, as my stock of Psyllium meals, is almost gone. I made the mistake though of starting to watch a film which meant I didn’t get started until just after 1 pm. An hour and a half doesn’t sound like much, but when you are making bread that needed to be allowed to rise twice before going into the oven, it’s enough to stop me getting to sleep as well. By the time the bread was on its second rise, I was exhausted and had pain growing all over me, but there was nothing I could do but stay up and get the job done. It wasn’t helped by the fact that in that over last week the pain in my diaphragm has started to grow again. I have had very little pain from it since I had my week in bed and hadn’t been eating. I was actually shocked at the way it diminished, but I suppose that I shouldn’t have been. I did go to the loo last week, without a doubt it was nothing more than just the toast and milk that I lived on for two weeks. So I now have at least another 7 to 9 days to wait for the next visit, but as I am pushing in the food the pressure is building just as it did before. I am holding on to the belief that by only having the Psyllium every second day, that it will still work well enough to ease the passage, but will keep the pressure down.

Something else that having an empty intestine has also highlighted is that every time I eat, even the smallest amount, that my stomach goes into a spasm. Not one that is overly painful, but one that I am very aware of it tightening and remained tight for the next half hour or so. I usually don’t really eat after about 5 pm, but despite that by the evening, it all seems to change. Every time I stand up, or reach to get something, the same tightening sensation reappears from nowhere. It was so noticeable last night that for the first time I actually put my hand over the area and could feel that all the muscles below it were tight and almost hard to the touch. It is something I have clearly felt in different parts of my body whenever there are spasms and also proof that unconscious muscle exercise doesn’t improve muscle tone. If it did I would have the best legs on the planet and perfectly flat stomach after the last few months. I will never get my head around the fact that a muscle can do such things without conscious thought on my part or that all the conscious thought in the world, won’t release them. Eating once agin every day seems to be taking me step by step back into the position I was in before I was too ill to eat and my body cleared totally. I doubt that I will ever get this thing beaten, or be able to eat without either spasms or feeling sick, my body really doesn’t like food and I just have to live with it.

Almost everything that I choose to do seems to have some kind of kick back, one I don’t think I have mentioned before is that not getting enough rest, seems to cause twitches and ticks. There is something about being over tired that causes those odd little actions that can vary from felt but unseen, right the way through to a limb suddenly jumping several inches. I used to have a terrible issue with my left hand, it looked more like the hand of someone with Parkinson than MS, an almost constant twitching when not in use. After I lost the total use of it for several months, as it slowly returned I could see that the twitch had almost vanished. It only shows up these days when I am over tired, like last night, or when I am trying to go to sleep. Trust me, there is nothing more annoying that finding yourself lying down totally comfortable and feeling sleeps first touch, to only find yourself wide awake again because your hand won’t stay still. It’s not just my hand, muscles all over me will either start to twitch or will perform sudden jumps. At times, it can feel as though you are some kind of puppet with a cruel puppeteer who’s warped sense of humour is to annoy the hell out of you. It’s rare that any of these things make any sense, this one is no different as what I don’t get is the connection with being over tired. I get the fact that being totally relaxed would make me more aware of them, but the tiredness factor in multiplying their number and strength puzzles me.

As often happens doing too much has a knock on into the next day, I was tired when I woke up. Even Adam asked if I was OK as he had noted my silence this morning. What he couldn’t see though as I was hidden behind my desk, is those damned muscles twitching and jumping in my legs, muscles that are already fatigued. Today is going to be one of those where I am racing as fast as I can to get past lunch and into my bed. I just hope that by then the puppeteer is too tired as well to bother with me.

Read my blog from 2 years ago today – 6/07/13 – Christopher

Ask any mother who has handed over their child to be brought up by complete strangers how it felt and without exception I would expect to hear everything from the worst day of their lives, to their biggest regret ever, for me it was a day when I turned the knife already in my heart for the first of millions of turns that have followed throughout my life…..