All I am going to say about the last 24hrs with my insides is, not good, not good at all. I feel as though they are taking over my entire life since I came home with that list of things to try. I am either trying to make things to eat with Psyllium or trying to eat the results, not alway as easy as it should be and the rest of my time wrapped up in pain. Being stuck in a situation that you can’t change in any way is wearing on its own. Being stuck there along with everything else in my life, well it’s pushing me into places that I don’t like going, those dark spots in my mind. The problem with those places is that they are an uncontrolled and uncensored free for all and they will drive you insane with worry over things that aren’t even happening. After two full weeks passing where I have done exactly what I was told to do, to not have one single positive sign that the doctor may have got this right, or that there is a possible positive outcome, is now beginning to wear thin.
I remember when I got my diagnosis with my PRMS that I thought it was the end of wondering what on earth my body was doing to me. I suspect that is a universal belief, as there it is in black and white, you have it, the reason for everything you had been battling against. When that letter came through, although the doctors had explained it to me in advance, I really let myself believe that life was going to get easier in so many ways. I know that may sound like an odd reaction to being told you have a progressive degenerative illness, but it’s not. You believe that if they know the cause that they will then be able to do something about it. I thought it was also the end of living in those dark spots your imagination runs riot and you convince yourself that you are dying, perfectly natural when no one can tell you what’s wrong. You don’t realise the truth is that that name means everything will be blamed on it and nothing done as the underlying cause is incurable. The more you hear that, the bigger those dark spaces start to get again, as you slowly realise that you were right all along, you are dying, not instantly but slowly. Imagination can be a wonderful thing, it can create magic, beauty and love, places you would want to live forever and places you wish you could share. It can open up worlds that can exist nowhere else, including the ones that horror writers feed on and scare the hell out of us with. I never have seemed in need of anyone else’s imagination when it comes to scaring the hell out of myself, my imagination can do that with phenomenal ease and regularity. With the help of my body, well let’s just say, no one, not even me wants to go there at all.
Last few days I have found myself locked in one of those dark spaces, my imagination was running faster than I could away from it. When you are in pain, even when you know the reason for that pain and you know your not at that second in real danger, our imagination has an art of totally ignoring all the logic it is being fed. I get scared, just as scared as I did in the past when I had no idea what was happening to me. In fact, oddly, sometimes I would say it is worse. I used to think that being scared was all to do with lack of understanding. As soon as you saw that the shadow man was nothing more than that, just a shadow, his power was broken. I used to think that being an adult, was all it took to be able to look anything in the face and laugh at it, it appears I was wrong. I can tell myself a million times that the pain I am in isn’t dangerous, it is nothing more than the PRMS doing what it does best. My nerves aren’t telling me the truth, they’re lying, sending out signals that say run, hide, get help, you’re in danger, all lies. Logic, my favourite belief system I ever found, you can’t argue with logic, it is what it is and nothing more or less, yet even logic can’t shine a light into those dark corners and kill the shadow man, as fear isn’t a shadow.
If pain didn’t scare me I wouldn’t be human, I know that. We’re hardwired to react to it as it is our alarm system there to tell us something is wrong and to keep us safe. In this case, the story of the “Boy who called wolf” is wrong, you can’t stop listening or believing what it is telling you, it’s there and it’s real and no matter how many times it cries out falsely, you listen and feel every second. I have always been able to deal with the pain in my arms and legs, no one has ever died from painful muscles without injury. I can see my limbs, I can check them over, make sure there is no cut gone bad or broken bones, limbs aren’t scary things, even when they stop working, their still where you can see them. But when the pain is inside, hidden, doing whatever it is doing for whatever reason, you can’t check it, see it or even often touch it. Let imagination get hold of that and the sky is the limit, what it’s doing, what it’s really doing could be anything. I don’t often admit that I’m scared, but in the small hours when the house is dark and silent and I am awake in pain, I often am. There is something about sitting by yourself, trying as hard as you can to be quiet as you don’t want to wake anyone, imagination suddenly has free rein. I have had everything from cancer to burst intestines, from strangled organs to internal bleeding, none of them real, none of them less frightening because of that fact. I never fear that during the day, but nothing is scary in the daytime, even when I know without a doubt that I have had worse pain in the day, it’s only the night that holds that power.
If there had been one illness that was tailor-made to fit with my fear it had to be this. You see I have never for some reason had a fear of dying, it’s something we don’t exactly have any control over, it happens and that’s it. My fear, my greatest fear has always been pain and having no escape from it and that is exactly where I live now. You would think I would have gotten over that one, but I haven’t. Even now, I fear it more than anything else and it has been part of my reason for not wanting to up my meds faster. I fear building up a resistance to them, of not being allowed strong enough drugs to deal with the pain of the future at home. Worse still that they won’t be able to give me enough pain relief when the pain eventually gets so bad I can’t bear it. It’s ironic I suppose that my greatest fear should become my life, but in my experience that is about par for the course. So there it is, my darkest fear which just like the dark spots that it lives in, I can’t escape it and I doubt I will ever escape it. I know I am a long way from alone in this fear, but just like the middle of the night, pain is something we all suffer alone, no one but us truly feels it as we do.
Read my blog from 2 years ago today – 5/06/13 – Heading for hell and not coming back
I chose yesterday not to write about how I felt for several reasons some as stupid as they get and others totally sensible. The stupid one was simple, I was trying hard not to think about it as I didn’t want to feel any worse than I already did, putting too much attention on something can I have found make it worse, almost as though by….