There are some bodily functions that in the past few years I have learned to hate. You know those things that we have no control over and in the main don’t even know are happening. That is until you are living with a condition that specialise in putting your entire life under a microscope. Last night, I had a bout of yawning, those ones that actually feel as though your lower jaw is going to dislocate. Something I am personally glad to say doesn’t happen that often, but when it does, it is something I don’t forget about in a hurry. I am sure that all of you know exactly the sort of yawns I am talking about, but I doubt most of you have tried this while your diaphragm is in spasm. Last night, just for an extra little bit of fun, I had two bands of intercostal muscles also in spasm. Painful? YES. It is like being inside a Victorian corset that someone is trying to their hardest to tighten just that bit more. As they apply more and more pressure, your insides which already feel as though they are about to burst free in response, try to spread into all the wrong places. If that wasn’t enough, there was one other issue, Adam was sat beside me. He knew I was in pain, he has lived with me long enough to know that. He has also lived with me long enough to know that I would have been covering the true pain and showing as little as possible.
We all learn our behaviours, covering pain is one that I learned a long time ago. It started in childhood, as we the children weren’t allowed to complain about anything and that included pain. We weren’t cuddled or soothed in the way as parents do these days. That wasn’t the fashion of our post-war parents. Being either sick or showing any weakness of any sort, just wasn’t acceptable. We were brought up to show a stiff upper lip and get on with life. If we weren’t sick enough or in enough pain to be in bed or hospital, we were well and fit enough to get on with life, go to school, do our chores, all without showing any ills. When my MS was unknown to anyone other than me, I was the mother of two small children. I was also the wife of a someone who because the doctors could find nothing, had decided that I was a dramatist and had no time for what he called my antics. I learned again that I had to cover everything that was wrong with me. The children couldn’t see me in pain, that would have just upset them, so I learned. My husband, who, fortunately, wasn’t around all the time, also had to be lied to, so I learned again. My lessons in acting over the pain in those early stages, when to be honest looking back weren’t anything at all in comparison to now, became part of me. They were lessons that meant I throughout my life since then has carried me through the whole horrid thing. I could work through the pain, I could even dance through it, just occasionally having to declare a so-called cramp, well it was only a partial lie.
I know that I don’t have the slightest reason on earth to hide anything from Adam, but I quite honestly, can’t stop myself. It is actually so much part of me, that I act even when there is no one here to see it. I doubt though that even the greatest actor on earth could totally cover the pain that enters my life from time to time. There are now times, like when I start yawning at the totally wrong time, that can’t be hidden totally. I might be full of Morphine and acting the hell out of life, but the pain is now visible. My face may not show it all, but my body lets me down and it reacts without permission and it is doing it more and more. I don’t like that, I don’t want Adam to have to see the truth, he worries about me enough without me showing what has always been hidden from everyone. I don’t want him distressed and feeling my pain, it’s one of those things in life that is mine, it’s somehow personal. Illness is intensely personal and I believe that is often forgotten by those around us and especially by our doctors. I know that my writing every detail in here, means that Adam has a view into it and gives him permission to be part of it, just as I have given permission to you to be part of it. But it’s still personal. As much as I know that doesn’t make sense when I read it back, it make perfect sense to me. I would actually put money on it that those of you with a chronic illness who are reading this will also understand.
This is my chronic illness, each and every one of them. It doesn’t matter what the medical stats say about how many of us share these conditions or how many of us share all my symptoms, they are mine, just as they are yours, if you share any of them. Whatever they are doing to me, it is my body they are attacking, it is me that feels it, sees it and lives with it. Doctors have our permission to poke and prod us, they have our permission to look inside us and to take our blood or even parts of us in a quest to diagnoses us. Their view of us is as an illness or a problem to work out. But it is our body, our insides and our diagnoses and all of those are intensely personal. The younger doctor, well on the whole I think they get that one, but the older ones, well most don’t even see us at all. At best we are a case, at worst we’re not even that. If we don’t fit into their speciality, we’re a waste of their time, time that now means they have to pass onto someone else as quick as they can.
I actually wonder sometimes if the fact that I do pour out daily what is happening and what my feeling about it are. If that actually makes me more precious about holding it all inside when it comes to my interactions with individuals. It doesn’t matter if it is Adam, Teressa or anyone else, talking about what is happening to me, either at the second or after, is something I try to brush over. How I am in microscopic detail, is in here. How I am when they are talking to me is in my voice, my words and my eyes, what’s hidden is hidden because it’s a form of personal and doesn’t need to be spoken about there and then. My brush off a statement of “I’m fine”, is there because there is nothing they can do to change what is happening to me. If I can’t change it, how can they and their worrying about it is going to do nothing other than make them feel bad. Which is another reason why it’s personal, I personally don’t want them to become ill out of stressing about my being ill.
Please read my blog from 2 years ago – 23/07/2013 – What annoyed us
Two Rooms Plus Utilities 
You spoke from my own heart and self. My partner has learned that when I say, “I’m ok..” this usually means I’m not ok. “Good” means I’m ok. “Great” means I can actually get out of bed. He’s learned to detect a shimmer across my face or if I’ve gone pale or held my breath a moment in pain. It is a greater pain knowing that I’ve caused him this worry, at the same time it’s a relief to have someone who wants to learn my “language”. It is a personal thing – because I hold so much of my fatigue and pain close to me most people assume there’s nothing wrong with me. Even when my partner picks up on something I laugh it off as “just another random pain!” But it’s also nice to have someone who holds me anyway
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