It’s another 5am start for me, thanks firstly to the pain that woke me and then to the sunlight coming in over the top of the curtains, I hate summer! Short of boarding the bedroom windows over, which I have to admit I have done in the past, there really isn’t any true way to keep the sunlight out. Yes, I already have blackouts and very expensive floor to ceiling curtains, but there is always that annoying little gap little gap that if it were possible to add in a pelmet cheaply, I would have done so years ago. Years ago I found the answer when I painted some cardboard black and cut it to fit exactly the window frame, pushed it in tightly and closed the curtains over it, perfectly blacked out windows. Following on from yesterday’s start-stop day, it was something I could really have done without, but here I am just after 7am, showered and sat here with my muscles once again going tight all the time just as they did yesterday. It is so bad in my right hand this morning that it is making both typing and using the mouse really difficult, the mouse is by far the worst. I’m not sure how much it is going to help, if at all, but I had this desire to strap it tightly, there was a tubi-grip bandage in the medicine cabinet, which is now on my arm, right now it does feel more comfortable, why I don’t know and how long it will last, well your guess is as good as mine. Without the slightest doubt, though, today is going to be worse than yesterday, as it already is, I am just waiting for Adam to go to work and my hair to dry a bit more before I go back to bed for a while. Why can’t I have just one day of life just like the majority of people out there, a day without so many problems?
I didn’t realise yesterday when I didn’t do the shopping that there were more things we were running out of than I thought, I just discovered that the quarter glass of coke I have this second, is the only one coke left in the house. Since I hate water and I haven’t drunk either tea or coffee for over 2 years ago, I am going to be rather stuck until Adam comes home at lunchtime with a couple of bottles for me, until then it tonic water, not quite the same without the gin. I am also not sure what I am going to have for breakfast either, I’m sure I will find something but it is a case of a having to think, rather than going into auto mode of just make and eat it. Actually I have been thinking for a couple of weeks that it is time I made a change to my diet, I have been eating the same thing now for months, I’m not fed-up with it or anything like that, the problem really is my weight and although what I eat is a very small quantity, it is rather high in both fat and calories, if I can find something to replace it that is lower it might make a difference, even if it is slow, I might loose something…….
…Well, that is my first 45-minute lie down, it really feels like a carbon copy of yesterday. To the casual observer my days would all look the same anyway, I can see that, but it really is my daily health that turns everyday into something different. Take yesterday, because I was being forced to keep stopping and having to rest from using my arms meant that I had time to do what looks like nothing, but I was totally happy in my own little world just looking around me at all my ornaments. I often go off into that world, especially when I am meant to be watching TV, the things in my living room, to me, are more beautiful than anything that they could put on a screen. I so love my crystal glasses and my heavy crystal ornaments that I actually find it hard to understand how others don’t love it too. Being forced to stop, to just sit on one hand was no problem what so other, but as the day went on I was becoming more and more annoyed by it as I was falling further and further behind with my scheduled. I don’t really deal that well with things that eat that much time, so I did gradually move from contentment into agitated, which is not a good place to be as that is stress. It is one of those circular games that you just can’t win, you have to stop, you have to rest, but doing so stresses you out, which means you have to rest, it doesn’t get any easier with experience either.
I am just hoping that as time goes on things will just settle, maybe if I had slept well last night this might not be happening again today. It was really my own fault that I didn’t sleep well, when I had been watching TV with Adam in the evening I was suddenly aware of a sharp stinging pain at the outside edge of my left breast, I leaned forward to put my weight over my knees and as I did so I felt liquid dripping from somewhere. On investigation once again I found a circular sore about 3 inches wide, half on my breast and half on my stomach where the skin meets, it must have been there for I guess two days as it is a real mess, I cleaned it, covered it in Savlon and ignored it. It wasn’t pain, from the sore that woke me, I never feel pain from something like that any longer, but when I did wake I felt straight away liquid running down my side, I was in a real mess. By the time I had sorted it all out and I had it covered in gauze and tissue bandage, which I should have done when I first found it, I was totally awake. The sun coming into the bedroom was just the final straw and getting up was the only option left to me. I really do seem to find it impossible to remember to take care of areas on my body where these sores can appear, I only remember as long as they aren’t causing me a problem, once healed I forget and sooner or later it happens again.
No matter how I try I just don’t seem to be able to keep up with this stuff. I have all the opportunity and time in my day to do everything that could possibly make a difference, but I just don’t seem to do it. I know I have written about this before but it is becoming a real issue and I am just not getting to grips with it. I suppose if I found some kind of enjoyment out of showering, rather than pain, exhaustion, and fatigue I might not have these problems, but I do and I don’t know what to do about it. MS has no logic to it and I am not an idiot, but along with not using my catheters, I am beginning to do myself unintentional harm. For two days last week although I was drinking as normal, I didn’t pass more than a trickle of urine each day. I knew it had to be there, that my bladder had to be full, but I did nothing, it was only yesterday when the laxatives worked that my bladder sprung into action. I know I said I had a stomach ache due to constipation, but when I am honest with myself, most of that pain was probably my bladder screaming out of desperation to be emptied. Over the past year, something has happened in my brain that I don’t understand and I don’t know what to do about. If my brain won’t kick me into action, if lists and reminders on my PC don’t even get through to me, what on earth will? It doesn’t matter what it is that I should be doing to keep myself well, other than taking my meds, I seem to be totally ignoring and it isn’t intentional, it’s just the way it is, but it can’t go on forever, one day I will let it go too far.
Please read my blog from 2 years ago today – 24/06/12 – I surrender
I am sure everyone has been where I am this morning, one of those many, many, points in life where all that keeps going round in your mind is ‘what did I do to deserve this’. That thought has been there since a little after midnight last night. I had stayed up late as Adam had gone to see his aging Aunt just…..
You have so many challenges in your daily life that most of us can barely imagine. I agree with you that lack of sleep doesn’t help as I also battle with light creeping around theblackout blinds and curtains. I never thought of using cardboard though. That sounds like a good idea and iI may try it. Thank you 😀 xxx
Pamela, you just cant know how you have helped me understand this monster that has taken over our lives. I too have weeping sores that feel like 3rd degree burns when i feel. Mine has become fungal infection and have been treating with anti fungal ointment, but is still spreading, my General doctor just called in an oral med to go along with ointment. It is gross! I sweat all the time where skin touches skin and that makes it worse.
question, does Your husband help you shower etc? I cannot shower or dry off without help, I loose function with exhaustion. What would do without our loving husbands? I dont want to ever know. Thank you again for everything!
Jewessforjesus aka as joyfulnana