I managed to sort out the adaptations to the bedroom, it was actually a lot easier than I thought it would be. I unfortunately now have the top draw of the dresser beside the bed slightly open as it allows me to hook the controller for the matters elevator onto the side of it, easy enough to reach but making things just that bit untidy to me. With it hooked there I can reach the buttons at the top of it, now the problem is that although I may be able to reach it, I haven’t as yet managed to get their layout remembered. Finding a place for my glass and tablets wasn’t as difficult as I thought it might be, as I already have a suitable items to hold both the glass and a small number of tablets. I know it will take me a few days to put it into my head that I have to bring a glass through to the bedroom each night, knowing my luck I will need it exactly on the night that I forget to take it. Routine adjustments always take practise but I will get there. Of course I didn’t need them last night, something I am glad off, but it’s like all things you prepare, you just want to be sure that the system works as well as you think it will. The good thing though is that with the buttons for the elevator now easy to reach I can use it as it was intended, to day I have only been using it when I absolutely had to as stretching my arm out and checking around on the floor, took more effort than saved. This morning I actually woke early not breathing as well I should have been, I raised the bed with the intention of getting up for a few minutes and feel back to sleep in an almost sitting up position. I already knew that raising the end of the bed was supposed to ease breathing but I just hadn’t got past the extra pillows, now I have an even simpler answer.
The temperature had dropped even further than I had expected, even Adam made a comment on it yesterday, something he rarely does as he doesn’t feel the cold normally. I am still planning as I did last year not to turn on the heating until November, in fact late November, life seems to be all about saving money these days. I have always been someone who has been quite good with money but even I am starting to worry about the future and how we are going to manage. For now we do OK but with no possible increase in money from my side and without Adam finding the golden job that pays considerably more, well I am not sure how we will manage in the future. It feels so wrong that although I have worked the majority of my adult life, never intending to do anything but keep on working, that suddenly I am now looking at a world where I can’t make money. I had actually always had a picture of me working until I couldn’t work another day, but that was meant to be somewhere in my 80’s not in my 40’s. I hadn’t ever had a plan to retire, although I did have a pension set up, it was more there for extra money, than for me to sit back and do nothing. I had that picture in my head that I would work part time and we could then have great holidays because we had the money to do it. I’m not sure that Adam had the same image, he is far more into the dream of retiring tomorrow if he could, as working has never been a real joy for him as it always was for me. It is strange how back to front our lives have turned out to be, even right now if I could find some way of working and making some sort of money from here I still would, but where is that great employer able to accept everything that happens in my world and still happy to employ me. An on going dream that I know will never be fulfilled.
It doesn’t seem to matter how one day goes at the minute as it somehow isn’t effecting the next. Usually when I get tired or I am in a lot of pain, the next day followed on in an continuation sometimes better and sometimes worse, but it continues. In the past couple of weeks it hasn’t followed on at all, they are all separate, one day it will be my lungs, the next my legs and so on, always changing and always different. It is so much harder to deal with as well, as I have no idea what is coming. Ever since the COPD showed up a year ago, it has all become more tiring and more draining on the effect on my body. It is as though I have lost any chance of a day off, or a day where things might at least give me a breather, life now doesn’t do that at all. I suppose that the COPD isn’t like MS or Fibro, or IBS, or any of the others I could carry on listing, COPD just is and seems to do nothing other than get worse. Two progressive conditions puts a drain on everything and leaves me constantly wondering just how long it will really all take, as they pull on each other, fight with each other and destroy together. I still haven’t done anything about sorting out the life insurance or anything as I have it in my head that if I have 10 years to live, then I needn’t bother taking it out for another 5 years as they pay out once you have had the policy for 2 years, well why pay them any more than I need as the payout will be the same regardless how much we have paid them. There is of course one problem with that theory, how do you know from what you body is telling you, just how much time there still is. I suppose that is one of the reason insurance companies make money and I know they really do make money.
Today it is my MS that has the upper hand, well at least for the morning. My legs from toes upwards have been shouting at me from the second I actually let them touch the floor. I seem to be having more and more pain actually in the soles of my feet, it is as though they are hypersensitive to every touch, knowing all to well each fibre of the carpet and how long they each are. Even though I now have them nicely encased in my socks to ensure they are warm, they have of course come up with something else to annoy me. The small pieces of toe nail that Adam was unable to remove and I am still waiting for a nurse to arrive to cut them correctly, they are now reacting to the pressure that the socks are applying. It is now a no win situation, a choice either to have pain or to freeze. For now I am taking the pain, as it is at least on the low side thanks for my meds, but at around 6pm the choice become more difficult, well the meds are running off by that point. Everything seems to be about choice, choices that seem to be growing more difficult as time goes on.