There is always a price to pay

I’m not promising, but I have started on sorting out my posts from 2012, with the possibility, that they might be, the start of that book I have thought about, so many times. I am finding it really hard because I am continually want to rewrite every single one. Yes, staying to the heart of each post, but correcting my extremely bad grammar and adding in details, that back then, I didn’t consider important. My style of writing has changed so much, that I keep finding myself both embarrassed and disappointed, at exactly what each days scrawl held. It is quite an eye opener. One thing is for sure, if it ever gets completed, I will have no problem saying that they are not an exact copy of what is already available online. That alone, for the start of 2012, will without a doubt, be for me, a total blessing.

I am still finding myself both tired, and drained, after Mondays hospital visit. What exactly did the damage, as always, I don’t have the slightest idea, all I know, is that bed seems to have been a constant thought, stuck right in the front of my mind. I hate when this happens, as I know without a doubt that that means, this is going to be a long week. When you find yourself aware of every single minute that ticks past on the clock, what other outcome could there be. Almost ironically, I found myself yesterday morning coughing up phlegm. Despite my years of smoking, I have never had what is commonly known as a “smokers cough”. I don’t have the slightest idea how my lungs have cleared themselves of all the gunk, they are supposed to produce if you smoke. Either mine never produced it, or they somehow learned to absorb it. Mind you, I can’t say that it is something that I have worried about, who, after all, actually want’s to hack their lungs up daily. I’m not actually coughing repeatedly, as I said, it’s not something I do, it just seems to be one single cough, then my mouth is filled with crud, that I don’t want anywhere near me. What is unusual about today and yesterday is that those coughs are appearing several times an hour, with always the same result. On Monday, I was at the hospital, where if my lungs were going to fill with a lumpy mouse, would have been the day to do so. Tuesday morning, I wake with that unmistakable congestions, that just kept growing. Sods law, I guess.

Between my tiredness and my submerged lungs, you would think that I had more than an unfair kickback, from daring to leave the house for a handful of hours. My PRMS doesn’t agree with that conclusion, it has been throwing different symptoms, and issues at me, almost hourly. Both large and small spasms; in any place that it fancied at the time; sensations; from mild to body stopping, on into both the imaginative and basically mundane. When my PRMS decides that I have been pushing it, it always makes me pay for it. A perfect example actually appeared just as I was ready to go to bed last night. I had, like every evening, been sitting on the settee watching TV. Adam had, as he usually does on a Tuesday evening, spent most of it in the kitchen weightlifting. It has been a hobby of his since his teenage years. Despite his desire to be a muscle-bound monstrosity, like most people, he doesn’t have the time or the money to put in the dedication required. He has settled to just staying reasonably toned and with stronger biceps than most men. He had joined me for the final half hour before I went to bed and to be honest, life seemed perfectly normal, then I tried to stand up.

The initial push upwards and away from the soft cushions appeared fine, then I got to the point where momentum ends, and balance along with muscle memory takes over. Everything felt totally wrong. Yes, I was almost upright, but not properly. My feet were telling me that I was standing on a sponge, not the floor it expected at all. My ankles, that my weight was centered and that they were being pushed over, into directions that weren’t correct. My lower legs had fire spreading over my shins and my calf muscles, had knives being sunk, deeply into them. The back of my knees felt as though someone had managed to reach inside them and were twisting and pulling all the tendons and mashing all of the muscle structure. Yet, the three inches both above and below my knees were totally numb. All of that appeared in less than a second and there was nothing I could do but launch myself forwards towards my wheelchair. I had reached out to grab the arms, but as my left hand touched the rest, I knocked my thumb joint, once about out of its socket. None of this, was possible in silence, especially not when I cracked my shin, into the foot rests of my chair, and my hip off the armrest as I span myself round, to slump awkwardly onto the cushion. I may have made it to being seated, but there wasn’t the slightest chance of me going anywhere, at least not at that very second.

Adam had jumped to his feet and was standing in front of me, in less time than the whole thing took. He was desperate to do something to help, anything. I was too busy inside my head, trying to sort out what had just happened and what was happening then. The numbness was spreading, all the burning and stabbing had been replaced, but more than just numbness, as it felt like a thunder cloud. The numb feeling was the cloud, and electric shocks that were firing off all over the place within it, the lightning. Adam was desperately holding onto different parts of me, asking questions and trying to help, but I was too confused by it all, to make much sense. I knew he wanted to help, but I just wanted him to leave me alone and definitely not touch me. I knew I was snapping at him, it wasn’t meant to sound the way that it did, but I had to stop him from possibly making it worse, as he couldn’t possibly know what was happening inside my body. When you are tired, confused and in pain, it is hard to make sense and even harder to be considerate for others. My snipes and demands weren’t supposed to be that way, it was just how my body felt, appearing in my voice. When I wouldn’t let him touch me, he offered to push me to the bathroom and to help me do what was needed before bed. Again, I answered badly, but he left me at that moment to do whatever I needed to do by myself.

I know that Adams intentions were well meant, but he, like everyone else who isn’t in a wheelchair misses. My increasing agitation wasn’t all coming from how I felt, there was much more to it. I was sat in my chair, in a position that is firstly, like parts of most homes, difficult to maneuver in. If I had been on my feet, I would have just quietly moved both out of his reach and out of the room, without any sniping. He had me trapped, I couldn’t move at all, not even by an inch. It doesn’t matter how much you love someone; that sort of position; plus the invasion of personal space; especially when you are already distressed; is never going to bring the best out of any of us; add in everything else, and I hope the picture is clear. That, though, is a side issue, it was the everything else, I am supposed to be writing about. The last thing I said before Adam moved out of my way was, “I have to do this myself”, I kept on saying it all the way into the bathroom and in my head, the whole time I was there. When I emerged again, I was both calmer mentally and physically, I was also able to explain to Adam, what had been going on.

I didn’t have the slightest doubt, that it was the fatigue that sparked all the sensations. Sensations aren’t dangerous, it is rare that I have fallen because of sensations alone, especially when I am already aware of them all being heightened. If I let sensations stop me, I would do practically nothing. Yes, I could have let Adam take me to the bathroom and help me, but that wasn’t really in the long term going to help me at all. I am bitterly aware of the limited use that I make of my physical strength and remaining abilities. If I were to give in, stop using them and letting him do everything for me, well, the long-term result, would be a body that is less and less able, to do anything for itself. Sensations, don’t stop me from taking a couple of steps, from chair, to loo, or anywhere else. They can be painful, upsetting and unsettling, but they don’t do any real harm, I have to treat them that way, I have to carry on as though everything is normal, or I’m giving in.

If, on Monday, I had just spoken to that doctor on the phone, something that could have easily been done, as I didn’t go through any tests or examinations, I wouldn’t have been going through this or the hundreds of other things that have happened because of it. The medical profession is blinkered to the conditions they specialise in. I have been frequently asked by consultants what PRMS is, they don’t understand even the effects of MS and PRMS is a bigger and badder version. The majority of hospital visits aren’t necessary and people like me, aren’t just like everyone else, annoyed by wasting time, we’re actually made ill by it. Our healthcare systems don’t understand that, and neither do our specialist unless it’s within their specialty. Today is Wednesday, I don’t know when this will end, but I’m sure, the doctor I saw hasn’t even given me a seconds thought after I left.

Please read my blog from 2 years ago today – 11/11/2013 – A night of note

I seem to be in a run of bad evenings, I was fine all day yesterday during the day, other than when I went for my nap, lying down seemed as it often dose to trigger my lungs into complaining, but that’s nothing new. I often wonder how it is that pain can be slept off, I know it can, as I do it all the time, but you would…..