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.