Pain, Privacy and Where I Am Now

I find it difficult to write about pain.

Pain is, for me, an intensely private thing.

I am not ashamed of living in constant pain, but even so, I fear telling people. I don't know how they will react, what they with think or what assumptions they will make. When I tell someone about living with pain they most often treat this as information when, really, it's just a fact. And that fact tells you nothing about how I experience it, how I manage it, how it intrudes (or not) into my daily activities, how it and I coexist. Me telling you now that I have lived with constant pain for nearly ten years now is just a fact to be tucked away in your head under the file: Dave Hingsburger ... that is if you bother to have a file under that name at all, I'm not suggesting or expecting that you should!

So, a while back I spoke to a doctor about some surgery that they thought might help with the pain. Joe and I talked about risks and benefits and decided to get as much information as possible. We pursued this option until it came to decision time and then, along with the doctors involved, decided not to go ahead. Not a hard decision to make, in the end, and not as emotional as I would have thought. I was then told that I might be able to interrupt the progression of the pain by rigourously monitoring my sugar and by taking on an exercise regime. They were clear that I couldn't reduce or eliminate the pain, but I could, maybe, stop it in it's tracks, make it such that it didn't get worse. I decided that I'd do both of those things, and I have. I am stronger and I'm off insulin both of which were to be expected if I did what I was asked to do.

Then.

A few weeks ago, I'm riding to work on the bus. And this strange thing happened. After 10 years of constant pain, it left. Just left. Funnily, I thought something was seriously medically wrong and that I was dying. the pain, if it does anything, it reminds me that I'm alive and able to feel. Without it, I thought I was having a stroke, or had lost the feeling in my legs. There were moments of sheer panic, I almost asked the driver to pull over. But then, it came back. It settled in to do it's work. It took me a full half hour to realize that I had had about 10 pain free minutes.

Then.

It happened again. Not for as long. But, even so, I was able to experience it without panic. I, oddly, didn't feel like 'me' and didn't feel like I was in my body, but I still enjoyed the absence of the pain.

Now.

Maybe once or twice a week, I have pain free moments. Some last up to half an hour. Some only for a few seconds. But it's astonishing. I was told this wasn't possible. But since February 1, I have been exercising upper body and lower body nearly every day. I do 'quadruple sets' of the leg exercises and have increased the range of movement in my ankles and feet. No, if you are wondering, this hasn't helped me walk and isn't supposed to, but my standing is better and my getting up from being seated is quicker. But the pain, is no longer constant. It's almost constant.

Let me tell you that the difference between constant and almost constant is enormous.

Huge.

I am very aware that this is my experience, I am not writing this as a suggestion that anyone else do the same. I am repelled by the 'I can do it, so can you,' narrative that people want to put on the experience of others. Just because some elite athlete can go 70 clicks in a wheelchair while racing down some track does not mean that I can do it - or even that I should want to do it. So please don't interpret this post as anything other than me wanting to document for myself and to share with you, the experience I am now having.

I want to go back for a moment to that first time that the pain left me. I felt simply uninhabited. I felt alone. I felt, and I know this will sound really strange, that I wanted it back, quickly. It was like I wasn't me without the pain and it frightened me. But ...

... I got over that.