I seem to be shaking less, but I also slept less last night as well. No, I know that any coloration between the two, doesn’t add up, but they are facts. I actually caused myself to not sleep well last night. It was totally my own fault as I put in one of my earplugs wrongly. The result, well a painful ear, one so painful that it woke me after six hours. Stupidly, I tried to reposition it and just go back to sleep. I woke two hours later when I ditched it and took a chance, one that paid off, I slept right to the alarm. It just shows that no matter what is wrong with us, we really can be the root of our own pain. When I woke the first time, I was in pain from my stomach as well, maybe not quite enough to wake me, but I could have with ease settled the blame there and not on my ear. I could probably sit here and list dozens of occasions when I have done just that, blamed my health for something that had nothing to do with it what so ever. The longer that we are ill, the easier it gets, just as it gets easier to be afraid of it. Logic says that doesn’t make sense, but there is now a fear, I didn’t feel at the start, and it’s a very real one.
Despite all the safety precautions that I have put in place, I have to admit, that I have never been as afraid of taking a tumble as I am now. Years ago, I paid no attention to my dwindling ability to stay upright. I still ran, I danced and careered up and down stairs without a thought. I had this attituded of if I fall so what. The recklessness of youth, well, not really, I was after all in my late thirties before I gave it a seconds thought. Youth had little to do with it, it was far more a case of belief, belief that I had had reinforced by my doctors that there was anything wrong with me. It has only been recently that I have been able to look back and plot clear changes, ones that have far more to do with my mind than my health.
Pre-diagnosis, I did everything that anyone else my age did, and if I’m honest, a lot of things that most people my age, had given up long ago and I did it all, totally fearlessly. In fact, the more the doctors told me I was fine, the more I pushed myself. Not to try and prove them wrong, it was more to show myself, that I was wrong. Someone who is ill, in my mind, couldn’t do half the things I did, so I had to be well. Then I got my Dx. I didn’t stop anything straight away, although I had the feeling that Adam often wished that I would, but we had a new home to decorate and I was going to do it. I had gone to the doctor as I had been very aware of an increase in all the things I had been fighting against. Pain, fatigue, spasms, I know now, that it was just the progression of what had been with me for 20 years. It was nothing more than progression, not a flare or anything dramatic. Something had triggered an acceleration of my health, but I still had no fear of it. Even when I knew what my future held, I had no fear what so ever, well not at first.
I had no fear until I hit the point that I thought I would very soon lose my job because of it. I didn’t fear the fact that I appeared by then to be a jibbering wreck. That my tremors were at their peak, my speech at its worse, my mobility was shot and my memory a total wreck. I wasn’t scared of my health, just losing my job. I had no fear of the chemotherapy, or it’s possible side effects, which I had none of. Fear still wasn’t part of my life. The flares that I had scared me a little, especially when I found myself in the hospital unable to breathe or talk, but that passed, just as all flare did. They left their mark, but they passed. I had gone through what should have been a traumatic five years for anyone, but I still didn’t fear my health. Maybe, a little oddly, the first time I felt fear, was the morning I woke up with no movement or strength in my left arm. It took a dead arm, for me to feel out of control, as that is what fear really is, not being in control of your body. Before that, my body may not have worked well, but it did at least work, now it wasn’t even doing that.
Until then, I believed that my knowledge and my being in control meant I felt no fear. Even when my arm returned, I had for the first time a fear of what it could do next. Everything kept progressing, at first, I told myself lies, I told myself the progression was due to the fact that I had lost that control. I had this new knowledge, that control could vanish at any second and in many ways, I had never truly got it back. Despite the fact that nothing like that has happened again, my fear of it has just kept growing. I would have expected that over the past eight years, as I learned more and more about my health, as we all do, that that knowledge and experience, would have slowly removed the fear. It hasn’t. I suspect that being told that my PRMS could stop me breathing any time it chooses, didn’t help, but that was three years ago, and I’m still here, but so is that fear. So why hasn’t it gone?
Fear is actually a healthy thing to have. It shows a respect for my own vulnerability, and I suspect, that’s why I didn’t understand it and didn’t like it. I have never been a person who gave into fear, in fact, I twisted it and used it as a strength through many years of abuse, bravado was my bedfellow and best friend. It’s somethings that once you have learned to do, is very hard to let go of, over time, you actually believe your own fakery. So oddly for me, I think being able to feel fear again, and to be able to admit that I do, is actually something really good. I don’t think I have ever before admitted that something scares me, really scares me, not like falling over, or finding yourself in the middle of a road with a car you didn’t see coming towards you. This is a deep long lasting fear, one that appeared out of a true understanding of my life, one I was free to feel because I felt safe enough, to be able to. It has taken me another nine years from first feeling it, to admitting that I do. It also felt right that I put all this in here, as I know without a doubt, I am not the only one who is scared by their health. I’m reasonably sure that those who have read for a while, must have thought that I was immune to it, well I’m not.
Our bodies are doing things to us that yes, maybe we don’t want everyone to see, so bravado has its place, but so do our fears. I don’t fear dying, I just don’t want to do it. Just as I don’t want to wake in pain, whether it’s my fault or just my body once again showing me who is really in charge. If you didn’t feel fear, well just like me, I’d say that you are kidding yourself, taking bravado one step too far, just as I have done for years. Survival strategies are just that, strategies, true survival is feeling all the things that are there and admitting it, to ourselves first, but it’s also good to admit it to those we love as well. It has only been in the last few years that I have started to feel the entire rollercoaster of emotions that goes along with my health, and boy, has it been one hell of a ride. As mad as it sounds, I have hidden the majority of them from Adam, if there is one person who I shouldn’t hide them from, it’s him. As I said, it’s hard sometimes to let go of things, but if it hadn’t been for his love and support, I don’t think I would have felt safe enough to even let myself feel. By writing this, it means that he now knows, but I think if I asked him, he would say that he already knew. Somehow, he always does.
Please read my blog from 2 years ago today – 21/03/2014 – Just floating in time
I am having one of those days were just trying to get things done, isn’t that easy. My mind is off on one of it’s let just go with the flow, not be bothered by what has to be done or even admit, anything has to be done. I always find days like this difficult because I have two arguments always going on in my head, the one that says you have to keep going or you will find yourself so far behind that you will stress out later, and the other one that just says “Whatever!”. Floaty days have their good sides, as just sitting drifting has a habit of taking me back in o those happy times, those days when the whole feeling of “Whatever” was lived to the full. Strangely there a two days…….