Accepting the risks

I don’t know what is triggering it, but over the last week, I have been finding my breathing at times, more and more difficult. It is almost as though my internal organs have turned to concrete and nothing is moving as it should. I am used to my diaphragm going into spam, and my intercostal muscles clamping in on me, but this isn’t just them. I am also used to my intestine being in spasm and over full, pushing everything upwards, as though it wants the space my lungs occupy, but it’s not that either. It is like all of them doing their thing, but with a lighter touch, then my kidneys and their supporting muscles pushing inwards while my oesophagus and trachea both feeling enlarged and as though they are fighting with each other, for what little space is left. I have tried using my nebulizer, it helps a bit, but it doesn’t clear it totally and the first few breaths are difficult, almost as though I don’t have the strength to pull the vapour in properly, adding even more power to the fight going on in my chest. Without a doubt, staying calm helps, but when your breathing is all out of kilter, it isn’t always the first thing on my mind. I have become used to the tension in my voicebox and the way it takes and gives me a voice at its choice, but when it’s playing up, it too feels enlarged, making the whole thing even harder. But the overpowering feeling to all of this, is one of weakness.

Adam reminded me the other day that I have had a similar episode in the past. He is right, they are similar, but on that occasion the real problem was down to coordination between the processes of taking a breath, swallowing and speaking. Somehow, they had all become muddled up, my voice vanished then too, but the biggest issue was my ability to coordinate them all. Life became stilted and silent, it was easier not to talk, as when I did, I managed no more than three or four words, without having to stop, to swallow or breath. It was proved to be one huge flare, but I landed up in the hospital for two weeks, because I needed oxygen when it was at its worst. They also gave me huge doses of steroids, via a drip for two nights, before sending me home to wait and get better. I think it took me a further two weeks to be fit enough to return to work, somewhere, some never thought I would be ever again, but not me. From that day on, I have had the odd reoccurrence, but they never last any great length of time, usually just minutes. As though the whole thing just went out of sink for a moment, then reset and continued as normal. I have noticed them being more frequent recently, and when my voice has been at it’s worst, yes, I have found myself once more in a muddle, but I think more because of the amount of air required to be forced through my vocal chords to just get a sound, than anything else. But he is right, this isn’t the first time, that my PRMS has stolen my voice.

We also discussed speaking to my doctor about my voice and throat, but both of us made the same decision, to see how my voice sounded on Monday. Guess what, it was almost fine again to hear, although not as strong a usual, outside of myself or Adam, I doubt anyone would notice. Regardless of how it sound, I can without out a doubt say that it just doesn’t feel right, any more than my throat does, even though it’s not sore. I know it isn’t helping with my breathing, as every time I talk when it vanishes, I have to push more air through my vocal chords, and that is wearing. Right now although I can talk, when I do, I can feel it, every word. If I lift my head to look upwards, everything in my neck goes really tight. It is all working together and making things harder than just breathing should ever be. I have of course done the obligatory searches online, and come back with everything from the most likely reason, my PRMS, through to other conditions like Gerd. It doesn’t matter which one it is, nearly all of them have the same outcome, nothing that they can do. I was reluctant to speak to the doctor as I fear that his response will be to send me back to the hospital to see yet another specialist, this time in ENT. That would lead to more test and more hassle. I just don’t see the point of seeing them, to be given yet another diagnosis of something they can’t do anything about. In fact, I actually said to Adam that if or when I do talk to my GP, that I just wished that I could add a proviso, “Please don’t test me for anything that you can’t cure or at the very least, really help with”. I have a long enough list of incurable conditions, and I am completely fed-up with having tests done. I am beginning to feel as though the whole point of my body is for doctors to do tests on. I don’t intend to give my body to them when I die, for that purpose, and I don’t see why I should let them do it while I am alive.

For a long time now I have had that wish running around in my head. I guess we all reach that point eventually, but having lived so much of my life fighting to get them to do tests, to find out what was really wrong with me, it’s still feels alien. When your body is falling apart, you do really get to that point, where you just want them to leave it alone to do it’s falling apart in peace. All they ever seem able to do is to tinker around the edges. What is the point of piling up more and more conditions, that do nothing other than giving a name to this pain or that one. I don’t need more names, what I need are answers. I know you can argue that until they have their required name, they can’t treat it, but that isn’t always the case. Quite often the treatments are the same, as name or not, all they are doing, is treating the symptoms. At the rate my body is degenerating, I often feel that it would be easier all round if they just took me into the hospital for a couple of days and run every possible test they can think of. That way, they would know before I do, what is going to give up the ghost next. I have often thought that there would be a true value in giving people like me an MRI from head to toe, well maybe not toe, but thigh at least. Once they had that full scan, it would surely make future diagnosis easier, just a scan of the area concerned, and there is the answer. Maybe what I am really dreaming about is actually one of those scanners they have in Start Trek, one sweep and that’s it, everything anyone ever needs to know.

So OK, I am being flippant, but I am truly fed up with doctors running tests on me. It does quite honestly feel as though there isn’t any of me left to test, and most of those tests, have changed nothing. Is it really surprising that I don’t want to put myself in the hands of any more doctors? It isn’t that I have given up, far from it, but I do have the growing desire to be just left alone for a while. I’m not stupid, I don’t need anyone to tell me that my body is slowly giving up the ghost. I know without a doctor to tell me, that my growing need for rest and my desire to sleep more is all coming from my COPD, combined with my PRMS. They have formed wonderfully complex circles, that feed of each other, the perfect storm if you like. Between them, my COPD and my PRMS have managed to trigger the beginning of the closing down of my respiratory system. PRMS on its own causes huge amounts of fatigue, but so does not being able to breath. As my fatigue levels rise, I struggle more and more with everything, especially breathing. I can’t win. My voice is just another symptom of all of this, unfortunately, one that feeds perfectly right into that circle and raising my fatigue levels even higher. I don’t need to see an ENT specialist to know any of this or to be told, whatever triggered my vocal demise, can’t be cured. Even if it came down to something outside of either condition, it always comes back to no treatment available.

When things like this happen, we all have one thing in common, we consider the worst case scenario, cancer. Firstly, let me say this, I don’t believe that it is, if I did, I would accept all their tests. It is though one condition that I try not to consider, as I honestly don’t know what I, or my doctors, would do about it. There is always one fact that I know already, no surgeon is going to want to operate on me if there is any other possible outcome. My physical condition and health, don’t make me the best candidate for such a procedure, regardless where it is on my body. No anesthetist is going to be in a hurry to put me under general anesthetic, and no surgeon is going to get anywhere near me, without one. I know that it is the fashion these days to do anything that can be done under local anesthesia only. That might be OK for something like the surgery they did to remove my shredded earlobe a few years ago, but not if they are going to cut me open. There is no way, I would stay on that table if I knew, they were going to do such a thing. I thought about it a lot when I thought that surgery might be the only answer to the problems I have with my intestine. The whole idea just filled me with total dread and more. I think of myself as a reasonably strong person, one who has managed to get through a lot, but no matter how I try, I couldn’t go through such a thing, not even to save my life. I know that I may feel different if I found myself in that position, but there is one thing I know for sure, it would take one hell of a doctor to sweet-talk me into such a thing. The worse my health gets and the weaker I get, I am sure that most doctors would equally want me to avoid such a thing. It is something that anyone in my position, should really think about, no matter how much we like to believe it will not be required, it may well one day. All it takes is a bad fall and you could find yourself lying there with the surgeons knife poised. Which is stronger, our fear of no anesthetic or our determination to demand one, regardless of the risk.

Please read my blog from 2 years ago today – 28/10/2013 – Where did I go?

I know that in the last couple of months I have returned again and again to this subject, but it is one that is growing in it’s importance to me and as I always presume that what I find hard, well will be what others out there…..