Learning from Illness (3) The beginning of Pain

In the last post I talked about the willingness (with some it’s a compulsion) to put a name on the thing that ails you. I tried to keep that in a humorous vein, but in this post I want to talk about my actual experience with amateur (and professional) mis-diagnosis.

I don’t exclude myself from this examination in retrospect – I was as guilty as anyone else in terms of getting it wrong, and, this is key, to wanting the diagnosis to be one thing, and not the other.

Wishful thinking plays a part in diagnosis when it’s not conducted by a professional. Even then, the professional may be mis-led by other factors, which is something we’ll get into in a later post.

To understand the mis-diagnoses however, we’ll have to examine the symptoms, and this is a game you can all play at home…what did/do I have? You’ll notice the use of both present and past tense in that last sentence. I’m not going to make it easy for you by giving you other factors which the original participants didn’t have. So pull out your notebooks and you tell me.

The pain started first just after dinner. In our house we eat around six or seven o’clock, By nine, I was beginning to feel a discomfort in what I would call my stomach, but it was in the general area of the breastbone – ie. dead centre of my torso midway between my groin and the base of my neck. (For you doctors out there, no, I’m not going to describe it more exactly in medical terms – no patient describes it in medical terms, and that’s the test)

So this discomfort – which I had experienced before but during the night – began to worsen over the course of an hour or two, to the point where I couldn’t do anything because of the sharp spasms of pain (which were dreadful) but even when they weren’t happening, there was still an underlying level of pain which was debilitating.

It got so bad that even watching television was painful. I was watching ‘Match of the Day‘ and each kick, each header seemed to cause another spasm of pain. After about two hours of this, I noticed that the pain had spread from the front of my chest and now I had aching across my back. I presumed this was from the jerking I was doing in response to the pain – in other words, not directly related.

I was unable to go to bed, so after my partner had departed for the sleep of the just, I just sat there. I took a few paracetamols. By one or two o’clock, the pain was unendurable. It had spread to my upper chest and lungs and my stomach was gurgling and rumbling. I had burping and mild nausea.

But I still didn’t vomit and the pain continued.

What does one do? I tried going to bed but it turned out that I needed to move every minute or so because the pain intensified in a still position. So sleep was out. Plus, I was waking up my partner with (and I’m not proud of this) moaning and sharp intakes of breath when the pain hit.

And for those of you still trying to guess the correct diagnosis, there was another factor. When I got into bed I was warm, but when I got out of bed, I immediately felt extremely cold. Equally, when I was in bed, though my body was warm, my hands were like ice.

A simple solution, you might think. But putting my hands on my body (torso) just made both my torso and my hands more uncomfortable.

Time went by and on into the night. As Raymond Chandler once said: “The next hour lasted three hours”.

The physical pain gets to be a constant. I’m not saying you get used to it, but it reaches a point where it doesn’t get any better and it doesn’t get any worse. Your head takes over. My head said ‘Stomach Cancer‘.

My head guessed at the years left and the quality of life in those years. My head thought, more rationally, ‘months left’ – maybe a year at most. And all of it dying. Pain for me with nothing but the sad faces of relatives and impersonal clinical rooms to occupy me as I occupied them.

With nothing to watch or read, and unable to do either in any case, the mind goes to a dark place in the middle of the night. Nothing has been confirmed, you know this. But you are on the journey that leads to such a place in a matter of days. There is no relief. Even, you think, if not this time, then some other time. And soon. That firm grip you used to have on life in your twenties is now shakier and getting worse. And on it goes, hour after hour.

And then, perhaps around five or six, you notice that the pain, though still powerful and constant, is not quite as powerful and constant as it was, say a few hours ago. Is that the imagination? You think about it and try to compare. Is it quite as bad? Maybe, maybe not. Take a few more paracetamol. Have another shot at trying to do a number 2.

And an hour later… is it as bad as it was an hour ago? No, definitely not. If it is, it’s certainly not as bad as it was five hours ago. And the dawn begins to peep through the curtains and there is the thought that if this thing stops, then there is the strong possibility that it is merely something passing through the body. Like food poisoning. (Oh, what I’d give for it to be food poisoning!)

It gets a bit brighter outside and now I think I could possibly lie down without it hurting. And I could do that without moaning or groaning or waking herself. So I do. I lie down in bed beside my partner and I think “This is okay – I can do this”. And while the pain is there, it is merely discomforting pain, without spasms, just a dull ache.

I think that the bad thing has passed. It is 8.30 am. I will have missed today and what work I might have done, but who cares? The pain is almost gone. The thing has passed. I am not going to die of stomach cancer. And sleep slowly comes as my partner, and the rest of the world, rise to meet the new day.

(I welcome any comments or suggestions as to what you think the illness in question is. If you want to follow the story of this disease, you can subscribe below.)

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