Friday, September 09, 2016

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.


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.


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.


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.


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.


Frank_V said...

Pain is also my constant companion, and there is little or nothing I can do about it. Pain is often an additional layer of complexity on top of many disabilities, but often unseen. As always, thanks for sharing sir Dave!

Unknown said...

I get usually two pain free moments of about 10 minutes twice a year, and like you, I was utterly flummoxed the first time it happened. Pain is also my constant companion and when it's hard to explain. The second time it happened, I recognized it for what it was and knew it would disappear quickly so I thought it would be a terrific time to carry a heavy box down the stairs. Pain makes me careful. Without it, I fell down the stupid stairs and hurt my ankle.

I'm glad you're getting some painless moments. They are lovely moments.

Unknown said...

As I hear people talk about living with chronic pain it is a reminder to me to have greater compassion for how it effects daily living. I have not lived with this experience so only have sympathy, not empathy. Thank you, as always, for your willingness to share your experience. It affords me learning opportunities that are not easily accessible.

Unknown said...

Thank you for your honesty....and hoping that you have more pain free moments....kudos to you for doing the hard work you have done, it speaks to the strength of your spirit. Clairesmum

Unknown said...

Dave I had no idea. Would it feel weird for me to say I will look at you differently from now on. I wake up with pain that goes once I get moving and have twinges throughout the day and particularly at night but I could not imagine having chronic pain. If I have pain for any amount of time I lose my mind and want it gone. I can tolerate large amounts of pain but not long times. Enjoy your pain free moments they do not change who you are.

Rosemary said...

I am in chronic pain 24/7. It has been this way for years (and getting worst). Sometimes, I forget that many folks have relatively pain free lives. That constant pain is not normal for most people. How wonderful you have experienced some pain free moments! I am in tears just writng those words, "pain free moments".

ABEhrhardt said...

You've been given a gigantic gift by your body: it is CAPABLE of being pain-free.

Keep this in mind. Tell you body you will welcome more pain-free time. Start monitoring what you're doing that affects it.

The even bigger gift is HOPE.

I've gone through the same thing - pain is there every day, but I have large chunks of time pain-free, and I know things I can do to help.

So happy for you!

Emily and Laura said...

I've been living with constant pain for some years, too. I did have a fairly major surgery, which actually greatly reduced the pain to far more manageable levels, but it only goes away with (these days quite mild) medication. Which is fine; I'm just happy to be able to do more activities before the pain forces me to stop. I know how lovely it is to experience those rare moments of no pain, though, and I can understand how you were freaked out the first time. When pain is a constant companion, its absence is truly shocking at first. I hope you continue to have more and longer pain-free stretches; pain itself can be just incredibly wearing, so any even brief relief gives you a bit of extra coping skill when the pain returns. Enjoy your pain-free times thoroughly -- you deserve every minute of them!

Unknown said...

I have Klippel-feil syndrome but do not have the outward signs that make it obvious to others...and I can not recall the last time I was totally pain free. It's just a part of me but, as you said, it is a completely private part of me. The vast majority of people I know have no idea that I have any pain at all, much less that I am in pain daily. It's my normal...