Where to start, where to end, What to reveal and what to hide?
My name is Helen and my pain story is one that is tangled up with the disease Ulcerative Colitis, some autonomic nervous system dysfunction and some very intense life events.
I was 21 when I was first diagnosed with Ulcerative Colitis, it was painful, bloody and messy to say the least. I am now 43 and trying to find my way back to a life that does not leave me in hospital every few months. 3 years ago I had a massive bowel obstruction and a terrifying hospital visit, more so than all the others had ever been.
I came out of that hospital with vivid flashbacks of all the pain and trauma of the past 20 years playing in high definition and with more re-runs than a Foxtel TV guide.
That was the tipping point, that was the point at which my brain screamed "ENOUGH!!!!!" That was the point that persistent pain became part of my reality.
The pain I experience is mainly in the long bones of my lower legs and feet the long bones of my forearms and hands along with joint pain in my hands, feet, knees and hips. If things get really bad I describe the extra layer as river of pain running down the outside edge of my legs that would look like a Los Angeles freeway at night time - countless pinpricks of bright light, lanes and lanes of them flowing along as far as the eye can see. The most intelligent reason for this that I have been told is that it is referred pain from my gut which came from an eccentric Dr who thinks outside the square. He suggested that it was time to see a pain specialist.
In the past couple of years I have been on 3 retreats at Quest for life. The way in which they care for you and teach you how to care for yourself is so far removed from the pressures that society, media influences and the health care system place upon us. The pain is still there but the way in which I experience my life has changed radically. The bad stuff still happens, after all there is much in life that is just simply not within our control. They have shown me how to deal with all that in healthier ways than I had been previously. I am much better able to enjoy the good stuff, and draw strength from that good stuff in hard times.
I was an Osteopath before the bowel obstruction and have had to stop working as I am just not strong enough to be working on people all day like I used to. The joints in my hands swell and hurt so much it makes me cry if I try and use them too much. Tears of pain and tears of frustration at not being able to do the job that I trained so hard for and love so much.
Most of the time I can manage quite well with a variety of strategies including meditation, exercise, medication and rest. Rest, rest and more bloody rest! I have developed my own rehab program which I now teach to other women in my community as a way of warming up for circus classes after they have seen me warming up in a very different way to them.
The thing that makes it really hard for me to get out and about is not pain but is that I can't stand for very long without collapsing, POTS is the official name for the problem. Some days I am fine, others I am not. Again I manage it with a variety strategies, including using a wheelchair if I know I am going somewhere where a lot of standing around will be involved. This does my head in as I know what I can do on a good day, but then my family and friends remind me that lying on the floor in a department store waiting for an ambulance is what happens if I don't use it when I need to.
I have seen over and over in stories here and elsewhere that one of the hardest things to deal with is communicating with Drs, more specifically the way they communicate with us. The dismissal of the pain experience of individuals is something that makes me really mad. It is the dismissal that is the most harmful, it is the barrier to getting help, it is a factor in the psychological injury that we incur. It is this that I would like to put on the table to discuss.