It is the third morning in a row that I have come through here and asked Adam to put the fire on, the outside world is freezing and as always so is the house. Well to be fair on the heating system, it’s not, just not as warm as I would like. There are some advantages of living on the second floor of a Victorian terraced flat, the surrounding flats do help to keep us that bit warmer but, without real insulation that every new house has these days, we all also loose a lot of what we try to put in. Like so many things in life, you take your pick of what you love most and like most people in this world, I want the lot! It is odd how we fall in love with the places we live, regardless of all the major reasons I could give or could be given for living somewhere else, it would more than break my heart to leave here, no matter how perfect the place I would be going to and it would have to be beyond perfect.

I didn’t just wake to find the house cold this morning, I woke to the alarm clock, nothing had disturbed my night, I have been up for some reason or another every night for the past 5 nights, but something wasn’t quite right, I could hear the alarm clearly. At some point during the night, for reasons that only my sleeping self knows, I had taken out my right earplug, I could hear clearly because it was missing and I still haven’t found it. This is the first time I have woken without an earplug, I have woken a couple of times to find I had removed my sleep mask, once I had even managed to put it on top of the draw unit beside my bed, but I can only guess that last night my ear was itchy and I couldn’t get to it due to the plug, the things I manage to do whilst asleep seems to be growing all the time. Honestly there was a time when I went to bed at midnight every night and got up at 4:30 am for work and did nothing but sleep like everyone else, on my side to start with and somewhere else the rest of the time, changing over and over. I was also the sort of person that if I tried to lie in at the weekends or when on holiday, I would have a banging headache to deal with, sleep was something I did because my body demanded it, but equally it also demanded I didn’t sleep too much. There is an odd drawback to not moving off your back at all and that is I often wake to find that the entire back section of my body from the top of my head to my heels, is tingling and painfully numb. It is so intense that I have to move and the second I do, it is gone, which leaves me with the huge question, how come I didn’t move when I was asleep and simply fix it? There is something really odd about my 10 and half hours sleep that I have nightly, I am totally cut off, way beyond what I would call normal when it comes to my lifetime experience of sleep. I must have wondered a million times just how long I might sleep if I didn’t have my alarm set, but I am so scared of messing up my routine that without I would make my health worse and worse, that I just can’t test it, but I still wonder. Everything tells me that I am more than dead to the world, at least in the first half, I can be disturbed by noise or light after the first 8, hence the recent addition of my mask and earplugs, but even then I still don’t move at all from the spot I was in when I went to sleep and that isn’t normal. Nor is my total ability to go to bed at any point in time and be asleep in minutes, whether I felt tired before I lay down or not and I now never wake with a headache. It is only in the last couple of months that I have been disturbed in my sleep, having to go the loo, or being woken by the people upstairs going to work, so the normal pattern in MS of fatigue caused by sleep disturbance, doesn’t actually match up with me. Right from the point when my MS turned into PRMS, sleep became something I just couldn’t get enough of and it has just got worse and worse as time has passed. When I started writing my blog, I was having two hours less sleep every day than I have now and if I am honest, well I know I could now easily sleep even more, the problem really comes when I try to work out when.

Although I do sleep during the day with ease, I know without a doubt that I am not getting the same deep sleep that I do at night. I still don’t move, but I also quite often sleep for an hour and get up without the alarm sounding, not always but about 20% of the time. Sleeping at night for all of us has much more of a renewal quality, not that I ever wake feeling renewed or refreshed, more just capable of another day. Sleeping during the day, is more a way of extending my time in the evening with Adam, without it I know that I would be in bed earlier than I am and as we only see each other for a couple of hours each night as it is, well I don’t want to start having to go to bed a 8 pm. So why don’t I just reset my alarm to go off at 8:30 instead of 7:30, there is a list of reasons why not. Firstly there is the fact that Adam is up during the week at 7:30 so that he can go to work, it is a few minutes that we have together and a time that lets me know that my husband who isn’t good at getting up to alarms, is actually awake and at work. The second one is actually the harder one, other than when I was a DJ and working into the small hours, I have always been up no later than 7:30. It is the time that days start, the world starts to move and I feel inside that I have to be doing something, I have to be here at my PC working if you like.

The longer I am ill, the more I realize that so many things aren’t what they appear on the surface, there are so many deeper reasons, meanings and feelings behind so much of what we do and sleep is another of them. Our bodies and minds may demand sleep, but ultimately it is our conscious selves that decides just how much we are going to allow it to have and when. Losing control of that conscious decision means losing control of so much more than just sleep. My whole daily routine is built around that start time and as I am still trying to hold onto “normality”, letting go of that start feels completely wrong. Letting go of the “normality” point would be like letting go of life and admitting that I am no longer part of the “normal” world, I would be giving into my PRMS totally and admitting that “it” now has final control.

Please read my blog from 2 years ago today – 17/01/13 – Aged by the invisible

My day started just in the way I expected with a snipe from Adam, as I said he read yesterday’s post once I had gone to bed and wasn’t happy I hadn’t told him at the time, I asked him what he would have done and he shut up after one word, “well…”