The problems of winter

My whole day is going to be centered round drink a horrid gunk that will flush my guts out, 1 liter to drink this afternoon at a pace of one glass every 15 mins, of course they don’t say what size glass, I would prefer to get it over and done with so I will use my normal “Slim Jim”. Then this evening I have another 1 liter to drink, the actual times are not set but what I want to do is head of the earliest version of evening I can as I once again last night was in bed by 9pm and I won’t be able to sleep this afternoon, well I doubt I will anyway. On the food side today there is a total of Zero solid food, just clear sugar free liquids. Eight years ago the system was different, you were allowed to eat and drink until 6pm and then had 2 liters to drink at one time, well it took me 5hrs and I through the last half liter went down the drain as I just couldn’t drink any more of it. I am going to try mixing it with tonic water and lemon juice, I just hope it is easier to drink.

There is no doubt that science has brought us forward when it comes to diagnosing things without surgery but I have yet to find any medicine or medical compound that has anywhere near palatable. I know that they are there for a different reason, but it would honestly make a world of a difference to someone like me who seems to spend most of my life having to drink there offerings. I used to believe that they actually did it on purpose to put you off being ill, well it didn’t work!

I am so glad that I actually turned the central heating on on Tuesday night as the temperature is now well below 0 and it to stay that way through out the week. Last year when ever the temperature fell this low I didn’t open any of the curtains on those days and it is the same to day, every curtain in the house is closed to maintain every tiny bit of warmth I can. One of the things about being disabled is that I find it hard to generate heat myself, so if I am sat in a cold room I feel it. I actually last winter bought myself a few things to help and I am so glad I did now. To look at me right now I would present a rather laughable picture, I have a nightdress, pressure socks, two dressing gowns and I am inside a sleeping bag, funny but I am warm. I also bought to heat pads that I can put in the microwave which then generate heat for a couple of hours, not in use yet but possibly soon. For the evenings when I am on the settee, I also bought one of those “snuggles blankets”, they have arms so that you can wrap yourself up well, last winter our electric usage came down a little, but it has to come down a lot more! Looks don’t matter, warmth and money saving does, I know many people who wouldn’t be happy about having to go to these lengths to stay warm but choice just doesn’t come into it any longer.

All these, are the lengths that being disabled in the 21st century involve, it seems so wrong that anyone with enough problems from their health has to worry so much just about what should be a simple thing, staying warm, and I know there are many more out there who are finding it far harder. Adam is working, not for the greatest income, but he does bring home money towards our bills, there are many out there who don’t have anything other than what the state gives them, I truly feel sorry for them.

I have a plan, a cunning plan…

I’m tired today, not anything to do with my MS or lack of sleep, it’s the kind of tired that seems to come from somewhere deep inside, almost from your sole. The kind of feeling that makes you want to go back to bed curl up and sleep in the hope that when you wake the world will be a different place. It is a tiredness that comes from my emotional heart as if I have pulled one bucket to many from the well and it needs time to refill. This week has had no more stress or activity than usual, nothing that has stretched me or challenged me. I feel as though I may have been running on half empty for a while and I haven’t given myself the space required to regenerate.

I sat here this morning for nearly an hour feeling blank and drained not knowing what I should be doing or doing anything at all. I noted that feeling a while ago in a previous blog and it has taken me until know to start to work out why. There is only one thing, bare with me here as this idea is forming as I write, it is so slight that it seems nuts that it can be the root, yet it seems to make sense. Until a few weeks ago, I had had a system as simple one and one I have slowly bit by bit pushed to one side. With the wonderful dark evenings I had been taking the space each day to just sit and do nothing. Each day had a simple flow to it set out by my health and the sun and I have now changed it, not on purpose but it has changed.

A few weeks ago I spent my mornings here at my PC, writing, reading emails and answering job ads. I blogged sent some tweets read others blogs and played some silly game or other. After Adam called at around 1 o’clock I switched of the PC and TV closed the curtains and went to bed for a two to three hours, my alarm set for 5 0’clock, just in case. When I got up it was always either dark or minutes from it so opening the curtains had no point, I would light a few candles, put the TV on and prepare dinner, sit down in front of the TV and waited for Adam to come home. Our evenings were spent together and had a gentle flow, of eating dinner together, heading through the remaining hours of the day until either the need to sleep took over or I simply had taken all of that day, my body could deal with.

Compare that to now. I spend my mornings here at my PC, writing, reading emails and answering job ads. I blog, send tweets and sort out photos for the next days blog, read others blogs and tweet some more. After Adam phones I go to bed for no more than two hrs, my alarm set to make sure I sleep no more than that. I get up put on the TV, my PC and sort out dinner. I tweet, reply to emails, read others blogs, play silly games, pausing just long enough to eat dinner, sometimes here at my PC, when it eventually starts to go dark I close the curtains, light the candles and sit down. There are only a couple of hours left now before bed, tired out and desperate for sleep. There is clearly the root of the problem, I am pushing in far more activity into each day, why, simple it’s light I don’t feel that as long as there is light in the sky that I should be sitting doing nothing.

I know that sitting at the PC to many of you will seem like doing nothing but it isn’t, the whole time I am sat here I am active doing things, trying to watch TV, write, play, speak and all at the same time. I am pushing in an extra quarter to a third activity and cutting my relaxation by the same. Clearly I am going to have to put this right, but it is going to be hard as this is something I have always done and was one of the reasons unlike everyone else I never liked summer. Daylight to me means activity, as long as there is light I have to work, clean be active, winter is the time to do nothing and summer the time to do everything. If the long evenings are destroying me already and I don’t take this in hand now, what am I going to be like by July. I can see already that this is easier than said as it is very much a deeply ingrained behavior, if I don’t though, I am heading at high speed straight for one almighty crash.

I remember last summer frequently having to go to bed as early as 7:30, I had seen my ability to stay awake later throughout the winter months as a small improvement. I am guessing now that it wasn’t an improvement at all it was simply I changed my way of doing things and stopped pushing myself to the limit. It isn’t going to be easy but for this coming week I am going to be strict with myself and act like it is winter and see how things go. I suppose it is the only way I can find out if I am right or not. I can’t trick my MS but maybe I can out smart it 🙂