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.

Scenarios

I seem to be always finding excused in the last few days not to do anything, I’m not sure why but I was even having to push myself to write and that isn’t the normal feeling for me at all. The only thing I can think of is down to my left hand. As I have written about on several occasions I lost totally the use of my left arm and despite it returning it never came back fully. It has frequently had me believing that it was going again due to strange feelings in it or pain, well once again it is playing with me. In the last few days I have lost the odd finger for a while and then it returns and of course typing makes me very aware of, and it is hard not to keep waiting for something else to happen, expecting the whole thing to just vanish again. I suspect that anyone would be the same but I take these things personally now, it is almost as though I get upset when I have adapted everything around my MS and Fibro and it then starts doing rotten thing to me that I don’t deserve. That all sounds a little childish I know but well it feels like a child like battle constantly, a sort of ‘tit for tat’ situation. I do something that they don’t like and they make me pay for it, they do something I don’t like and I sulk.

The longer I am ill, the more it feel totally like being in a symbiotic relationship, and the more I think of it that way. I have never felt as though I am in a fight to stay well, as I know that is stupid and anyway the more you fight either MS or Fibro the harder they kickback, it is far more about getting a balance and then working with them, and it works. On the whole I have walked the tightrope for years and stayed on it reasonably well. When things start playing up, I start looking at everything I have been doing and look for what could possibly be the reason so I avoid repeat it. If I can’t find the reason, that is when I start worrying about the why and what next. My hand playing up is becoming a frequent occurrence which leads me to thinking that I have to so some reassessing, what I have been expecting from it, may well not be the reality and maybe I need to lower the bar a little. I don’t like doing that with anything because it becomes a notch on the downwards slope, something I always take seriously. I don’t suppose any of us like to lower the expectations of ourselves as it takes a chunk out of our self esteem, like it or not, we are all delicate psychologically, it would be great to just shrug your shoulders and move on again as though nothing has changed.

Progressive illnesses are difficult that way, as anyone with one will tell you I am sure. It isn’t like having for example a broken leg that when healed leaves you with a limp that will never go away, you learn how to deal with your limp and it is part of your life but it isn’t going to get worse, all your adjusting is done and it just becomes a fact. Everyday anything could change in my health, I don’t know what it will be, or what it will do, some symptom I have now could get worse or a new symptom could appear, there is constant adjusting, constant changes to my ability and constant reassessing of how to live with it. I can’t actually remember the last day that I didn’t feel something or notice something and found my mind starting the process just in case the worst happens. Living like that could destroy you very quickly, unless you find your way of dealing with it. I am now careful not to let my mind run to far, as I have learned that it is still more likely not to happen than happen. It is human nature, we all do it and we all need to do it, so if some idiot says to you don’t worry, hit them. No, OK it might make you feel better for a while, but I can’t recommend violence, but the skill is to not worry to far, always remember the balance that the worst case scenario rarely actually happens.

Progression is difficult but you and I can live with it as long as we don’t become paranoid about it. I might loose my left hand again, today, tomorrow or next year, or even never again, but I am aware of it and I am ready for it, but I don’t let myself worry about it beyond that. I set my balance and I have to keep to it not just so I don’t drive myself and those around my nuts but because that level of stress is just what MS and Fibro don’t need, they then have the excuse to run wild and then the worst case scenario is far more likely to happen.