The thief of life is at it again. I am so lost and confused this week. I can’t even hold onto the day of the week, for more than a few minutes. It feels as though, I have spent the whole week checking the calendar, or double checking what I am doing and why. I can deal with pain, with spasms, all the different memory problems, with any of the medical symptoms of my gang of assailants, but frustration drives me up the wall. Yes, I know, that is the nature of frustration, but it’s just so frustrating. It doesn’t matter how many times, I stop, relax, then start again, it just reappears, which winds me up even more. This whole week has been that way. It doesn’t matter that I have had a good nights sleep. That I’m as close to rested as I get. That I’m happy and ready for another day. None of that matters when you can’t remember if this is Tuesday, Thursday or even the one in between, that I couldn’t remember the name of earlier. Frustration has already found its way in. My PRMS really has got this whole game of illness polished brighter than any diamond. It needs stress to thrive, all the stress that I have over the years strived to remove, item by item. I had taken it’s greatest triggers and smashed them into a fine powder. So what does it do, it removes even more of my memory, it truly is a devious and clever opponent, as frustration, creates it food source with ease.
Frustration and memory are the perfect combination. It’s rare for me to get frustrated by my body, well, occasionally, as yes I am human. But there is no competition between them, memory is the perfect trigger, and wins hands down. At times, it can be perfectly clear. Last night, I was watching “Eastenders” and I could with ease, remember small details, from an episode that I saw years ago. Two seconds later, I couldn’t remember the name of the character I was looking at, or their current storyline. How can one brain do that? How can it send me somewhere to do something, then decide to wipe all knowledge of why I moved at all? Why can it cut out huge sections of my own life, when I need them, just for them to be there later on? How can it steal my words from my mouth? Why doesn’t it tell me that I put lunch on to cook over an hour ago and that it’s now quietly burning? How can it leave me lost, confused and occasionally terrified, by the tiniest change in my own home? How can it be so contrary about why, what or when? How can it do all of these things and so much more? For someone who adores perfection and precision in everything, it is the cruellest trick my PRMS could have chosen, from the list of possibilities. But the cruellest bit, the bit that makes it frustrating, the fact I am 100% aware of it doing them all.
I don’t know just what has upset me this week. Things had actually been quite a bit better recently, which rightly or wrongly, I have been putting down to the fact my breathing has improved. Within a couple of weeks of having my nebuliser and the new inhalers, I couldn’t help but notice that especially, my speech improved. It might just have been coincidence, but I really don’t think so. I know that I have I said it before, months ago, that I was sure my brain wasn’t receiving enough oxygen all of the time. It was, though, just my opinion and I have nothing to prove it was my COPD, or even back it up, other than my experience. Not only has my speech been clearer, but those long gaps while I searched for the next word, have been more than halved. My mind has been less fuzzed and far quicker, I just generally felt more like myself. When you have a shopping list collections of illness to choose from, what is causing what, or has been the trigger for anything, is almost impossible to workout. Add in the fact that illness is phasic, the picture is even more confused. What I do know is this. Right now, my brain still doesn’t feel fuzzed like it was pre-nebuliser, foggy at times, yes, but not that almost audible fuzz. My thought processing is sharper and my speech clearer than pre-nebuliser. My memory has fallen apart again, so this time, I’m blaming either my PRMS, or my Fibro, but my money is on the PRMS.
On the surface, my memory problems sound like nothing in the great scheme of things. It’s only when you actually take a few moments and think of the realities of their effect, that part of my frustration becomes even more understandable. Every time I forget something that is in another room, means I have to make another trip to fetch it. Every trip, planned or not, seeps away at my energy reserves, increases the fatigue levels in my arm muscles and frequently triggers spasms in my intercostal muscles. It also means that pressure is being put onto my hands, which increases the chance that my thumb and knuckle joint will dislocate, either then or later. Yesterday alone, I was forced into making 8 more trips than I really should have needed to complete. On Monday, it was more than double that. When you open up that picture and look inside, my agitation and frustration, starts to make more sense. The more frustrated I get by it, the more I seem to forget. For new readers, please don’t suggest any of those so-called memory aids, been there, done that, doesn’t work. Yesterday afternoon, I had to clip my nap as I really couldn’t put off having a shower. My shower was probably the only thing that went smoothly yesterday, and actually, took less time than expected. Because of how I was feeling, I headed back to my bed just to try and spend half an hour totally relaxed, but not asleep. My plan backfired, despite my having sat here, double checking, that I really did have half an hour to spare when I got up, I discovered that I had got the time totally wrong. I hadn’t just looked at the time on my PC, I double checked it by the alarm clock in the bedroom. Somehow my brain had done what it so often does, it had tricked me. My relaxation was wiped out totally, my frustration and stress levels shot through the roof. I stopped trusting myself with time a long time ago, but when Adam isn’t here to confirm things for me, this is what happens. If all of that isn’t enough, I started my day by going through just half of my morning medications. I used my nebuliser and inhalers but totally forgot, for two hours, until my pain levels were rising, to take all of my tablets, every single one.
If my brain would just hold onto what it is supposed to be doing, this week, would have been a totally different story. I know we are only one Wednesday, yes, I checked. But I have been more tired than I should be and I have spent so much time just cursing myself, over time wasted and unavoidable confusion. My frustration values, clearly have been high, but there really isn’t anything I can do about it and it’s worrying. As I said early, frustration breeds stress, and stress breeds any problem you can think of that my health has ever done. I can see that the rest of this week is just going to be one long battle with the whole thing. I have frequently joked, “Who needs a brain”, well this week, that joke has run out. All I want right now, is even half of one, as long as it’s the half that seems to be missing.
Please read my blog from 2 years ago today – 25/11/2013 – The hospital and back
Two Rooms Plus Utilities 