There was something I wrote the other day that twigged something in the back of me head. Oddly, well not really that odd for my brain, I don’t remember what it was or when I wrote it, I just know that I did. The back of my mind is often the safest place for information to lurk, as there it isn’t being interrupted or written over by the activity of daily life. I have often found that this happens, it is almost as though I write something and a light goes on, then it grabs the subject with a smile and the knowledge that it will be the subject for me to write about in the near future. I guess the oddest thing is, I am not aware of doing it at the time, but I always know it’s been logged and I always know that I will use it within a couple of weeks. I nearly did the other day then I found myself locked into something else and it dropped back into the pending file, occasionally being added to and padded out just a little. The subject of my lurking friend this time was pain and how I see and feel about it now. I had written something about the grade of pain I was in and how these days that level was what I saw and accepted as “normal”. Pain, any pain, isn’t normal nor is it something that any of us actually truly needs to be in, so how does someone thinking change to the point where living on Morphine and still in pain and somehow find that to be “normal”?
Clearly there is a large factor of getting used to things, but even that doesn’t feel right and in many respects, that in itself is wrong. No one should be allowed to get to that point where it’s just part of our lives and to believe that’s the way it is. It actually makes me a little angry not just with the medical profession, but with myself. By the time they actually got around to finding the correct diagnosis, I knew that normal painkillers just didn’t work for me at all. I was beyond the point where an aspirin was going to make me feel better. Twenty years of living with pain had taught me already that relaxation was the only thing in my armoury that helped. It didn’t get rid of it, but it made it easier to bear and allowed me to handle it and life. So when I received my diagnosis, instead of doing what I should have, demand that they did something about the pain I was in, I continued to deal with it myself. Yes, they gave me drugs that they hoped would modify my condition and over the first 3 years we worked through the spectrum available. They did nothing, something I was later told was pretty much expected as it is one of the problems with PRMS, it doesn’t react like any other form of MS to meds. All they could do was to treat me for my symptoms and that was the first time that my pain was actually tackled. We worked our way through a range of painkillers, but whatever they gave me, the effects were limited. Even now, when I am living on a high background level of Morphine, I frequently have to take another high dose to deal with the breakthrough. The pain I live with still isn’t truly under control. So there is the history, but those are the facts, not the answer to my question. “How did I get to seeing this as normal?”
The answer to that is actually quite complex, but I actually think there will be a large number of people who will relate to it. When you are fighting everyone and I do mean everyone, friends, families and doctors, to get them to believe and not dismiss the fact you know you are ill, your whole way of looking at life changes. Without meaning to, you set up several different mindsets that you switch between. The first is that they are right, there is nothing wrong with you and it is all in your head. If it’s in your head, well you just have to fight it, to change that perception and to get on with life. Surprise, surprise, that doesn’t work. The second, forms because you don’t want to piss off those around you. When they don’t believe you are ill, constantly showing or saying there is something wrong, get’s reactions of annoyance, disbelief and even direct anger. You learn to hide everything. You put on a performance that keeps their anger at bay, which in itself makes your life not only easier but less painful. The third, well I’ve mentioned this one before. You convince yourself that if there is nothing wrong with you, then the rest of the world must be feeling exactly as you do. Everyone must live with the exact same level of pain as you do, therefore you are just a total wimp and you have to toughen up and get on with it. The fourth is probably the most obvious, that you have to be totally mad and the only thing that you can do is shut up before you find yourself locked up somewhere. The final one is the one that got my diagnosis on it’s umpteenth attempt. I am ill and I have had enough of been called a liar, they are going to listen to me. I am sure there are probably others, but these are the strongest ones that I am aware of and they are the three that I switched around within for years.
All of them, except the final, have one thing in common, you are putting on an act, an act that you have been involved in for so long, that showing reality is almost impossible. Even now, I hide, I can’t help it. Even when I am on my own, I will feel a shot of pain that would have many screeching and doubling up. I remain almost silent and hardly moving at all. I have become conditioned to my illness and what is often seen as my being strong, is actually just me hiding again. I am so locked into it that I am sure that I have made my life harder as even doctors don’t always believe me when I tell them how bad it is. I know that happens, it has happened a lot despite my diagnosis. Being stoic is a double-edged sword, usually with both edges facing straight at you all of the time. Unusually though, there are times when being stoic actually does help with the pain. It is such a phycological game that I am playing that the game itself gives me strength, and that strength, allows me to be still and silent, to breath through the pain, rather than go to war with it.
20 years of playing games, of pretending and acting my way through a world that at the time not even I believed was real, has put me into an odd position. I have learned to bear pain, pain that has and is without a doubt getting worse in line with the progress of my PRMS. It appears that my bodies reaction to my munching myelin monster is to cause pain for every new munch. To be able to see pain as “normal” is actually an advantage to me, if I didn’t, I would be screaming and crying all the time. I believe, that I have to be able to call it “normal”, otherwise madness would be my next stop. For some reason, we seem to be programmed with a need for normality. I think we need to be mentally comfortable with our lives, otherwise we are living an abnormal life and where is the comfort in that. I guess that is why “normal” is a personal thing, but I would go further and say that “normal” is a desirable thing and without it, we are living in turmoil. I have become calm, accepting and totally at home with my pain. That doesn’t mean that I like it in any way, it just means that I am at peace with the life that I live and it shows. It has also played out to be an unexpected ace card. I am now in the position that when I tell my GP that my pain is beyond what I can deal with and that I want my background level of Morphine raised, he doesn’t argue, as he knows that it is really needed if I am actually asking.
I have heard it said that you can get used to anything. I suppose that my life is sort of the proof of that statement, but I think it is a statement that only touches the surface. We all have a mixed relationship with our health, but it’s our health and when you can’t cure it or change it, you have only one other choice left, to accept and embrace it. I guess that is one thing that isn’t a game or an act, it’s my reality.
Please read my blog from 2 years ago – 04/09/2013 – New life
Almost every time I think this is it, I have done everything needed and I can just go back to enjoying my PC, it points out something else that still needs to be rebuilt. The new drive was installed with ease as where window 7 and the Alienware Software, all of that was done yesterday afternoon and I spent right through until 9pm updating both……
I PRESSED “LIKE”, ONLY BECAUSE MY COMMENT WOULD BE SO LONG; IT WOULD PUT YOU TO SLEEP. SO MANY THINGS TO SAY. DON’T WANT TO WASTE YOUR PRECIOUS TIME……SENDING LOVE………NEVI
Brilliant, clearly expressed, thank you for writing this so well.
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