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.

Financial Frosting

I am on the verge of turning on the central heating, this is the third morning in a row that I have had to put the fire on in the living room as the house is cold. I try not to put the heating on as like most people I don’t want high bills until I have no choice, with no work the need to keep the bills down grows daily. I know Adam would probably never put the heating on as like most men he doesn’t seem to notice the cold at all, at this second he is on the settee without a shirt on and I am here with a cold nose and fingers. When you loose your mobility you also seem to loose anyway of controlling your body temperature. It is normal for people with MS to not like it being too hot, but I find that I need the room temperature high with light clothing, if I add more clothes I don’t warm up as such but I start to feel ill. Locking the heat into me in a closed fashion, as a jumper would, makes my feel really bad, turn the heat up and sit in a nightdress and I feel fine, but let the external temperature drop and I quickly freeze. I don’t understand why temperature control is so hard to maintain, but it is really a big problem, add on to that I can’t afford to have the heat on, as I would like it to be, and there is my problem. I suspect that winter will only be a growing problem for everyone with the cost rising all the time, we are all going to suffer.

It is very clear to me now that every problem that anyone can have in life seems to be heightened by illness and it is often these heightened problems that make living with illness harder than it needs to be. I am not asking for any type of special treatment, but what I do know is that I now find difficulties that I didn’t include years ago when I made my first list of things required to make my future comfortable, just as I am sure we all do. You plan ahead, for example on what limited mobility will mean to you. I set my home up to be my nest as I knew that one day I would be ware I am now but I never thought that limited mobility would mean sitting freezing in my own home, when the thermometer is reading a temperature that I would have been happy to be in years ago. Or that I would be in the situation that in the upcoming winter months of not being able to go into my own kitchen and cook a hot meal because there is a very high risk of just burning it, bad on three levels, no much needed food, waste of fuel and danger of damaging the house. I never foresaw my future to be anything like this when I was young and I still never really foresaw it all when I got my diagnosis. I know it could be seen as doom and gloom but if it had all been written down for me to read once I knew what was wrong, I may well have planned slightly better.

The list of things that I wish someone had told me and explained to me, seems to grow all the time, but it is simply the fact that I didn’t know or imagine that has left me in this position. I know that we can’t predict the future but I also know me and I would have made more investments than just my works pension to help ease us through this time. That is actually something I need to look at soon as I can draw from my pension when I am 55, not that that may actually be a bad move, but I will have to find advice on what to do there. I hate all this paperwork stuff now and I like many don’t know when or who to trust when it comes to financial advise, I can’t get out there to do the rounds and see what advise is given by different people, so where do you start, again something I might have done differently, I think I would have had a better hold on my money and paid more interest as to where it was and what it was or wasn’t doing for me, when you have a steady comfortable income they are all issues you think you have a long time to get to grips with all that stuff, I thought it would be another 10 years plus before it was of final interest. Yet here I am, a little lost as to what and who I can trust to sort out all these things.