Certain uncertainty

Sometimes things happen that we can’t be totally sure why. Things change all the time, that is just a fact of life, but what I am talking about here, is something that could be or could not be connected to something else. If you have read for a while, you will be well aware of the problems that my PRMS and COPD combined have had on my breathing. I was sent by me GP, just over a month ago now, to see my COPD consultant as my breathing and oxygen saturation were getting worse and worse. The majority of my breathing problems are really caused by my PRMS, it thinks it is funny to tighten and collapse both the external and internal muscles that are connected in the motor actions required to breath. Trying to get air into your system when you diaphragm and intercostal muscles are clearly in spasm, is hard enough. Add in the fact that the internal structure of your lungs is not strong enough to hold their shape, well, you get less and less air in each breath. Before I went to see him, I expressed several times, a concern about the fact that I often felt as though my brain wasn’t receiving enough oxygen. I was more confused, more muddled than usual, and I kept getting terrible headaches, especially when I first woke in the morning. When I left the hospital clutching a nebulizer and a prescription for a steroid inhaler, I wasn’t convinced that they would change much. Yes, I understood that their purpose was to keep my airways as clear as possible and as open as possible, but I couldn’t see how they could help when my lungs were being crushed.

So here we are over a month on, I have to say that I am totally surprised by the improvement. I am a long way from what I would call normal and no, they don’t stop the struggle when I am being held tightly in what feels like a corset. When things are really bad, I am still only managing just around 88% saturation, but the rest of the time, things feel better. I even managed to peak at 97% the other day, it was only a peak, but that is almost normal. I kept a close eye on it the other day and I was actually disappointed to find that my average had fallen to 92%, one down on where it was before. The figures don’t add up with how I feel. I haven’t woken with a headache nor have I woken feeling muddled, for nearly two weeks, and I actually feel, as though my breathing is just that bit easier. It’s not as though I can take any deeper breaths, or hold it for a longer length of time and as I described the other day, there is actually a new addition to my bodies determination to not let me breath. Feeling better just doesn’t add up at all to what the figures and my body is actually telling me and doing to me. The feeling that most of the time my lungs are under attack hasn’t changed, but I knew it wouldn’t. That would have taken something that would undo and change the damage done and is being done by my PRMS, but I still feel better. I can only guess that the twice daily treatment with the nebulizer and the steroids are really helping to build up and maintain the internal strength of the air sack structures. Somehow, they seem to be able to withstand the crushing just that little bit better. I am no doctor, but when the pressure is almost the same, but the actual air reaching my system seems to be more, well it is to me is the only logical assumption, that could explain how I feel. I still have another month to go before I go back to the hospital, it will be interesting to see what happens during the second full month if anything. All I really want is to see that oxygen saturation rise.

Three weeks ago, I woke in the middle of the night because I had two really painful spasms in my left foot. One was crying out at my from my instep and the other had a total grip on three of my toes, little one inwards. I had to sit-up to deal with it, but as I pulled my leg out from under the covers, the movement triggered a third, screaming upwards over the top of my foot. It wasn’t something that I thought of note at the time, it was just another set of spasm, ones that once massaged and stretched in every direction possible, cleared. As often happens, over the next week, the one in my toes and in my instep came back, as if to just remind me how painful it really was. I have never really worked out why spasms do that. The milder ones, just vanish, not never to be heard from again, that would be bliss, but the severe ones, they always chatter on for a while after, a little like the aftershocks that follow an earthquake. I couldn’t help but notice that every time I put on or took off my socks, my toes were always numb. It didn’t bother me at first as I never felt it any other time. Then last week, that changed. I could feel they were numb every time I stood up and whenever I took a few steps, the only ones I take these days. On Wednesday, I was suddenly aware that it was spreading. I was now numb not just in those three toes, but for about two inches above them into my foot, both in the sole and the top of my foot. I have been warned many times in the past that I should be careful with my feet, especially as I refused to wear shoes. The MS nurses and OT’s worried that I might cut them, and not having a great deal of feeling in them as it was, that I might not notice a cut and it could fester without my knowledge. The irony doesn’t escape me, here I am now a full-time wheelchair user, and suddenly, my foot has decided to start dying on me.

I am more than used to having different areas of me vanish, or have that numb feeling, but just like spasms, they don’t normally last that long. That was what happened yesterday evening, my entire left leg from half way down my thigh, right down to my toes, joined in with that totally numb feeling. Luckily, numb isn’t dead, it more a sensation of numbness, not quite as dull as you feel after a local anesthetic, more the feeling that follows about an hour later. If I prod at it, well I am aware that it is being touched, but it is an odd sort of spongy feeling, even when I press something pointed into it. It lasted about an hour or so, then slowly it returned to almost normal. I say almost, as since then my calf muscles have been tingling and the majority of the sole of my foot, is not totally numb, but dulled. I have to admit to being more than a little concerned. I may not walk anywhere any longer, but I do still need both legs for transiting from my chair to any other location. Last night, that nearly failed as well. I was in the bedroom after making a midnight trip to the loo and I stood up. Just as I was about to lock my knees, both legs started to shack, with clear tremors above and below both joints. For a fraction of a second, I thought I was going down, that instead of the bed, the floor was going to be next location. Then normality returned and I pulled myself upright. I don’t know what caused it, but it left me shaken, as it has never happened so strongly or so clearly. I have spent so many years worrying that I would lose my legs. Years, of fear and sheer panic about the whole idea whenever there has been mild numbness. Now, that it is closer to reality than it has ever been before, I am concerned, but somehow calm about it. I know all to well that it might come to absolutely nothing, that in a couple of days, normality might have returned, but right now, it’s my new reality.

I think that is something a lot of people miss when they think about chronic illness, we never know what is going to happen next. That things are always on the move, doing this. or that one day and something totally different the next. You never know if it will last minutes, hours, days, weeks, months or forever. Each new event could be your reality forever and all you can do is wait and see, wait and hope, wait and find out. Our entire lives are a waiting game. Waiting to see what happens, if any of those symptoms you know about, but haven’t had to live with yet, might just appear. Waiting to see if you will reach all those worse case scenarios, or any of them at all, waiting to find out, just how long you have to live. Nothing is certain, nothing is ever guaranteed, other than the fact that we just don’t know, we know nothing, other than what has been and what is. Our lives aren’t about the future, we can’t plan that, as we can’t even plan the now, with any certainty at all. Right now we have the body we have, right now we have the brain that we have, but an hour from now, we might have neither or a completely different configuration of both. Uncertainty is the only thing that is ever certain and despite all of it, everyday life goes on.

Please read my blog from 2 years ago today – 31/10/2013 – Vanishing lifetime

I went to my bed last night at 7:30, exhaustion had made the whole day difficult to get through and when Adam came home I told him then that I really needed to sleep. I sat up for another hour as I wanted to spend some time, no matter how…..

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