It’s hard some days, just getting from the start to the end. Don’t get me wrong, I can do it and I don’t have any desire not to do it, it’s just hard. My energy levels are getting lower and with them, it appears that my minds ability is also. By around 7:30 in the evening, I am little more than a vegetable. Scintillating conversation isn’t exactly high on my list of things to do. I just sit there watching TV beside Adam, with the odd words passing between us, but none of it exactly stretches the old cerebral matter. By the time we are in the kitchen sorting out my meds, well some nights it might vanish. If I am honest, physically I believe that 8 pm is now the time I should be going to bed. I have more than once now, found myself slipping into a half-world of sleep just while I am using my nebulizer. When I have to, I can pull myself into what might be called awake, but it’s far from alive and I don’t have any answers for it. If there is one thing that I’m not going to let this damn disease take away from me, is my time with Adam every evening. It is more than precious to me, it’s what my days are about. (No matter how many times I have tried, for some reason, this page is refusing to hold onto the paragraph separation. I have highlighted each by starting in bold print. I apologise for the fault.)
My days vary a lot now, I have my good and my bad as I always have, but it feels as though the bad now outnumber the good, even when I don’t bring pain into the equation. It’s not like I want to spend my entire day in bed, but I just don’t have the energy I once I had. I am very aware of the changes that occur during the day. What it takes just to go to the kitchen to fetch some food, or to go to the loo, it often feels like it removes more energy, far more than any food will supply me. Even sitting here just typing at times leaves me drained. I can actually feel my brain fuzzing over like there is a blanket that is muffling everything and once it reaches a certain point, I just want to wrap it even further, settle into it and go to sleep. I don’t, but I have a feeling of not being quite here, not fully in touch with what is around me. I have lived with brain fog for years, but this is subtly different, this is warm and yielding, fog is just there and deeply annoying. This is very much part of the new “normal” I mentioned the other day, but that doesn’t make it any of it easier to live with. In fact, I think I am going to remove “easy” from my vocabulary, as I don’t think there is a single thing, other than going to sleep, that that word applies to any longer.
The warning signs, the beginning of my body moving into this new “normal”, was when I knew I had to stop walking. When I stopped walking it was because my legs were giving away under me, somewhat like melting into the ground. It wasn’t happening every time I stood up, I didn’t even happen every day, but it was often enough that I was now scared. Some might think that by not using my legs more than for just transiting from wheelchair to bed, toilet or another chair, that this would be a problem that now isn’t relative, I just wish that was so. It’s actually a problem that is growing. From once in a while, it is now something that I deal with several times, every day. The difference now is, I know when it’s going to happen. It’s rare in the morning, but it happens, as the day progresses, it’s a reality of almost every transit. Adam calls them my wobbly legs, which makes it kind of cute sounding, but from my side wobbly isn’t cute at all. By the evening, they are dancing all over the place, even when I’m sat down. When I do have to stand I find myself fighting so hard to stay upright, not because I’m scared of falling any longer, but because if I do, I know Adam is going to have just one more thing to worry about, the very thing my chair was supposed to take away. Even when he is taking my socks off for me at night, they make the whole job harder for him when I can’t keep them still. My legs are now as useless as they appear. I don’t know what I’m going to do when I can no longer take those four steps.
I suspect, that those who read regularly and even Adam to, at first, saw that as purely an issue with mobility. At first, even I tried to, but those thoughts didn’t last long. Mobility was the visible side, what was going on inside was far greater. It was then that I started having greater problems with both my bowels and bladder. Being able to empty either now depends on my ability to relax in ways I never had to. Controlling muscles are hard when they don’t want to be controlled. Relaxing is now the only way as all the muscles that once pushed, that added momentum, no long do anything other than producing pain. All I can do is sit there, relax and hope.
I don’t know when I last felt hungry when I last had the desire to eat. Some of that I am sure is down to the problems that I have both getting it in and out, but now there is no desire. The time for food arrives and I eat. Do I enjoy it? Well, that is a hard one. Sometimes yes, I enjoy the flavour, but no, I don’t enjoy food as I once did. I eat. I have never been a lover of really sweet things, but when Adam offered me some Maltesers the other day, I think both of us were surprised when I said yes. What I wanted was to let them dissolve in my mouth, as they have a unique texture. By the third one, that had worn off and all I had was this disgusting sweetness. I chose that as an example, as my reaction to all foods is similar. It’s not always a disgust at the flavour, it’s normally the feeling that I just don’t want any more. It always happens somewhere around the third or fourth mouthful. I continue because I have to, we all have to eat, that doesn’t mean we want to. I often eat simply because I can’t stand waste. If you put it on your plate, then you eat it. A rule that I was taught from childhood, but as an adult, I took it further, if you’ve bought it, you should eat it. When I’m doing the shopping, I often think about just not buying it, but there is this hope that I will feel different, that I will want to eat, and what then, I can’t go out to buy it, so I buy it in case, then I have to eat it, because it’s here.
I can go on isolating every part of my body and the problems that each brings, as there really is little of me, that I can find that works the way that it once did. I could analyse just how it feels taking a breath when you’re encased in an iron cage. How to learn again to breathe, no more deep breaths, just those the cage will allow. But it doesn’t matter what organ, which limb, or which muscle, every part of me is somehow governed by that blanket that has wrapped its way into my life. I have no get-up and go, no excitement about what tomorrow will hold as tomorrow will be just like today and the day before that. Yet, I’m oddly content, at ease with the fact that this is my life. I guess this is another way that acceptance works. You accept and slowly over time as you accept and you accept again, you become content with whatever life brings you. In time, there is even a great feeling of peace in my body falling apart, a peace that all logic says shouldn’t be there, but it is. It’s almost as though this peace and contentment is a gift to make up for the fact that with it, comes a lot of pain. I doubt that makes sense, especially as I have tried many times to put it into words, but whatever I type, always somehow reads back as wrong.
Life has changed, it’s changed forever in just four short months, and I see no sign of it slowing down. It is what it is, but there is still a lot to come. I know I haven’t hit the plateau yet, but I haven’t once felt as though I was falling, just travelling a path that I can’t change. In fact, that’s something else that has changed, how I look at it. I used to see my health as failing, that I was constantly on a downwards path, but “downwards” doesn’t describe it now. I guess that’s another part of accepting it now as I have. “Downwards” is negative and I don’t feel negative about this at all, I just feel at peace and content to keep going with it. Of all the changes, all the physical things that I now live with, this, is without a doubt the biggest. It was subtle at first, but it has just kept growing, especially in these last few months. I can’t explain it any other way than to say that I am now at peace, total peace with where I am and where I am going. Why it has changed, I don’t know, all I know is it along with everything else, has changed and it feels like the next natural progression.
Please read my blog from 2 years ago today – 06/04/2014 – It’s basic
The strangest things can make us happy, put a smile on your face and your heart jump with joy, even make you physically react with a positive action and exclamation of “yes”. I think this shows how my life has changed out of recognition, as that was my reaction when I opened the draw this morning to get a spoon for my breakfast. The dishes had been piling up for a few days in the dishwasher so yesterday I had to use a dessert spoon to eat my porridge, I know that is what most people use, but I like to use a soup spoon and when I saw one sitting there, well I reacted like an idiot, as I said, the strangest things make us happy. I have noticed over the last few years that it is more and more the small things, the things that I wouldn’t have probably even…..