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…..

It’s not hard, it’s life

My arms are dead. Well, clearly not dead as in that I can’t use them at all, but dead when it comes to wanting to push my wheelchair. Ever since I started using my chair, I have had this odd period between 8 pm and 10 am, where they feel like lead. Just like lead, they are heavy and feel like if I try to apply to much pressure, they will bend in all the wrong places. At first, I thought it was just that I was tired at night, that the muscles had simply had enough after having to move me around all day. That was until they started exactly the same thing, in the morning and then around my afternoon nap. It is so extreme at times that I have actually felt the change between awake and dead happening. I had only been laid down for a few seconds when I clearly felt this odd numbness forming at my neck, running across my shoulders and down into my arms, then on into my hands. It was exactly the numbness that makes using my chair so hard. Once it has hold, they are gone until I force them back into action, something that takes about half an hour to fully shake off. The longer I am using my chair, the worse it is getting. It’s only a guess, but I can’t help wondering if I have upset the nerves at the top of my spine, as the way they shut down, points far more to a nerve issue rather than a muscle one. My PRMS forced me into this stupid chair and now, well now it’s working on making it impossible to use.

This morning, they just don’t want to wake up and every time I have to go anywhere, they are so flipping useless that all the effort is having to come from my shoulders and upper body alone. My arms are more like pistons fixed to the wheel rims, rather than assisting in the process of pushing. It isn’t helped by the fact that I woke up today with my right hand feeling like someone had put it in a vice overnight. Holding onto the wheel rim and not letting it slip is hard. I have already today managed to pull several muscles in my right arm, in around my armpit and side of my chest and it’s only 9:30. Some mornings, you just want to crawl back into bed, not because you are tired, but because you simply can’t be bothered with all this shit. I don’t feel like that too often, but today is one of those blue moons that are just that bit bluer than normal.

One of the reoccurring things I have picked up from comments to my blog, right back to the beginning and right up to yesterday, is the opinion of some, that I am extremely hard on myself. On mornings like today, I almost agree with them. There is no reason on this earth, that I can’t just follow that feeling and jump right back into my nice warm bed. Yet here I am, sitting right where I always do, typing and putting myself through pain, that I could quite easily be avoided. Taking my booster, was my preferred option because, a) I’m not going to let some stupid arm, stop me from doing what I do, and b) I’m not going to let some stupid mood, stop me from doing what I do, oh, and c) I’m not going to let some stupid illness, stop me from doing what I do. That’s me, pig-headed about what I do, and who, or what has the right to stop me. Some of you might see that as being hard on myself, but I don’t. I know totally that I push myself, don’t let myself take any setback lying down or even slow me down, but there is a good reason behind all of that. I have made the mistake of letting things get to me in the past and it has never had a happy ending. I learned from my life that if you give in, you might as well give up. It has been the rule that I have lived by all the way through this whole situation. Yes, I do know the difference between, resting, or taking time out and giving up, but I am not going to take that chance.

The worse my health gets, the more I can see just how easy it could be to close my PC down, wheel myself through to the bedroom and climb into bed, for a while, or even forever. I see that as a fast track to death. Almost as bad would be to settle myself on the settee and waste my life away watching TV. Personally, I think far too many people out there who are too willing to just stop. Even worse than that, are the people who turn night into day, give up that connection to the world and let themselves stay up all night and land up sleeping all day. I don’t care what anyone says, if you have the strength to get yourself from one room to another, to sit and watch TV all day long, you have the strength for some sort of activity. It doesn’t matter what you do, but we all need that structure to our lives where we have daily goals to achieve. We have all known someone who has become unemployed and the slowly vanish. They change as time goes on and they haven’t managed to find another job. The more time that passes, the more they vanish, until they are ghosts of their former selves. It is no different with chronic illness. I push myself because I want to live. I set goals, have to do lists and fill every minute of my day because I am not ready to give up on life. It doesn’t matter how ill I feel, how much pain I am in, or how hard it is to get up, if I can do it, I can do everything else, so I do.

To me, chronic illness isn’t an excuse to disconnect from the world. The world may not give a stuff about me, but I still care about it. Mindset is everything. When my son, Jeffery died, I sat on the settee and I disconnected from the world. I sat there for several days and felt as though there wasn’t a single reason to do anything. I don’t remember doing anything, even eating. Then suddenly one day, it was as though I woke up, I realised that I couldn’t sit there forever, I had to live. I went through almost the same process when I was diagnosed with PRMS, but this time, I didn’t slowly rejoin the world, I gave myself one almighty kick up the backside because no one had died. I was still alive, all that had changed was that someone had hung a new title around my neck, chronically ill, but I wasn’t dead. Unlike Jeffery, I had a life and to be alive meant I had to live. I had to do all the things I always did, for as long as I could, otherwise, what was the point. So yes, I am hard on myself, I hard on myself because I have been given a life and life is hard. I don’t understand why I should just give up, why I should do what is expected by the very same society, that doesn’t give a damn about me. Chronic illness isn’t death, it’s life.

If anyone out there expects me to just say, “my arms hurt too much today to complete my post”, well you’re going to be waiting a long time. If anyone expects me to say, “I’m too tired to do this”, or “I’m not well enough to do that”, again you’ll be waiting, because I don’t intend anytime soon, to be letting go of the life that I have, no matter how painful, or how difficult it gets. Life is for living and life is tough on all of us.

Please read my blog from 2 years ago today – 16/10/2013 – To tired to actually care

I seem to be avoiding today, avoiding it in every way I can. I’m not even sure why I am trying to avoid all the things that I know have to be done, including the shopping which arrived an hour ago. Apart from the freezer goods….