I really don’t want to sit here and moan, it’s hard not to when life begins to feel like “Ground Hog Day”, but I have done what I can to explain how things are just now and other than to moan, well I don’t know what more I can say about it. Yes, today is once more a day where I just want to vanish in the hope that when I reappear, life will be closer to something I recognise and want to be part of. There is a small plus, so far today I have stayed out of bed, other than when I woke up there. I once again woke at 5am with the bedroom filled with light, but worse than that I could hear something, something that sounded like some weird creature breathing just beside me. Even in my half-asleep state, I knew that was impossible, but I had to open my eyes fully just to be sure, there was nothing there, just this weird sound. I knew it would stop me sleeping until I tracked it down, so I got up and headed into the hallway to see straight away that Adam forgot to close the curtains in the kitchen and bathroom, plus the bathroom window was also open, so there was the reason for the light. Adam was where I expected him to be on the settee and snoring so deeply that I knew for once he wouldn’t be up and following me around, just in case. One of the problems of having the old fashioned quarter lights above the internal doors is that they don’t just let light into the hall, but they also let light travel further and both ways. I went to the toilet and then into the kitchen with the plan of sitting there to have a cigarette before I closed the doors to cut out some of the light and then head back to bed. Closing the curtains isn’t something I have really been able to do for quite a while now, the weight of the curtains and the height I need to stretch to means that not only is it exhausting, it has also become dangerous. Standing isn’t as simple as it used to be, when your balance is off, so is your ability to do anything that means you aren’t firmly planted on the ground.

I was sat there in the kitchen on my perching stool, making mental notes about asking Adam to be more careful and to close the house up before he lies down on the settee, it is a mistake he makes all the time and has never learnt from. Lying down on the settee for what he intends to be a few minutes before he does something, always means falling asleep and never doing it at all. Suddenly I heard the noise again, I also recognised it straight away now that I was awake, it wasn’t breathing, it was a pigeon cooing in the back garden, even sat there in the kitchen where the windows were shut I could hear it clearly, but it didn’t click until I was heading back to bed why it woke me. Standing in the hallway with the bathroom window open, it was a lot louder than normal, loud enough to go through the closed bedroom door, enough to distort the sound and to make it sound like breathing. With all the doors shut, I climbed back into bed, not convinced that I would sleep again, but determined to at least get some more rest. I didn’t, in fact, lie there for long, sleep soon took over, but a disturbed nights sleep is never as effective as one that just covers the entire night.

I spent yesterday evening once more sat there trying to work on the muscles in my arms and legs, just hoping that I would find the way to release them and to bring some sort of peace. Things had been better since lunch time when I did something that I am going to say right now and very clearly, is something I do not recommend to anyone! One of the drugs I take is Gabapentin, it is an antispasmodic, which for the past couple of years I had without discussion been play around with and discovered that I could cope on a slightly lower dose than that which had been prescribed. To me it is something I have always done, I have this thing about not taking more than I absolutely have to of any drug, for several reasons. Firstly I believe that your body can become used to drugs, which means over time they don’t work as well and secondly, I just don’t think it is wise to fill your body with stuff that isn’t totally 100% necessary. With the increase in the spasms I have been having over the last few months, I had actually put myself back up to the prescribed dose, it helped at first but slowly it felt as though I hadn’t changed the dose at all, but I kept on taking it. Of course, because I haven’t taken the full dose for a while, I have spare tablets just sitting in the cupboard, I also know that I am not on the maximum dose, so what I did was put myself on to it without speaking to anyone. Things improved within the hour, it had taken the worst edge off how I was feeling, so I took the new dose last night and also this morning, the difference is marked. I am still fighting to keep going but I am doing so at a level where I can keep going, I am just below the wanting to explode level. My plan is to stay on this dose for a few days, less if I find I am back to or close to what I call normal, but right now it is needed and it is making life bearable.

I have spent around 10 years now being the one who prescribes for myself, normally I speak to the doctor first, but this time I had the answer here, I didn’t need a new prescription and I was totally sure he would have said try it, he usually does. I am going to see how things go and if I find the higher dose is the only thing that holds me steady than I will call and ask for my prescribed dose to be changed permanently. The relationship I have with my GP is one of the reasons that although his surgery is miles away and I could have changed to a new surgery when we moved here, I stayed just where I was. When you are living with an illness of this sort, there is one thing that makes a huge difference, having a doctor firstly you trust and secondly who trusts you. He knows that I never ask for anything that I don’t really need, that I hate taking things that don’t seem to make a difference and that I will fight on my own to deal with things, meaning when I call him, he knows I really need help. I know without the slightest doubt that if I picked up my phone and asked him for a higher dose of morphine that I would get it, that kind of faith actually means I have one less thing to worry about and one more thing to put down as a huge positive, next to my husband, my doctor is the most important man in my life.

Right now, I am sat here dosed up on everything I have, but I still feel far more negatives than I would like. All I can do other than what I have done is to wait and see what happens, if it is just a phase or if it is something that I have to take further action on. I just keep hoping that the next time I fall asleep it will be the time that I wake, without my skin burning, my muscles feeling like they want to explode and with the true feeling that I can make my way through the day as I have made it through all other days.

Please read my blog from 2 years ago today – 26/06/12 – Normal service restored

I have been told many times in my life that I have a way with words and an ability to empathise with others, probably why I was a successful sales person but more than that it is something I can only explain has come from inside. I wasn’t always aware of it and to be honest, the first clues that these were parts of my personality didn’t show themselves to me until I was 13 and I started at school…..