With my health in the way it is I am often asked to explain the level of pain I am in. Like most EDSer’s I’m not a screamer or shouter when it comes to pain, I go quiet, get quite grumpy and do lots of breathing exercises. To the outside observer I may look absolutely fine, on the inside every joint in my body hurts. I can honestly say today that the only place that doesn’t hurt is my feet. I look dreadful as I am doing a Casper the friendly ghost impersonation and have huge dark circles under my eyes.
Why do we EDSer’s suffer in silence? Why can’t we scream and shout about pain the way that other folks do? I believe its because we are so used to pain and not being believed when we tell people that we are in pain, we have lost the ability to express it. I mean whats the point in telling someone if they can’t do anything about it? Or they are going to tell you its growing pains, its all in your head or you are making it up for attention.
When I try and describe what my pain feels like words escape me. I can’t tell you, all I can say is I have used every drug in my arsenal and I am still hurting. I can only reduce that pain by lying very still on an electric blanket put on its highest setting. It doesn’t mean that the pain has gone, it just means it is at a level where I can distract myself from it.
The one to ten pain scale means nothing to me. Everyday starts off at least a five at the moment and depending on how my body wants to play it the pain either increases, stays the same or drops down to a 2 or 3. Ten is supposed to be the worst pain you have ever experienced, most Dr’s and nurses compare a 10 score with giving birth. This is silly as it automatically excludes 50% of the population who happened to be born male and will never experience this. It also excludes me and many other women who have chosen not to have children.
I have had a ten moment in 1998 when I had bowel adhesion’s and the pain was so bad I was going in and out of consciousness, do women in labour do that? I don’t remember hearing of any women doing that, maybe they do. That’s my ten that I use to score my pain against, so far its never been a ten again.
The pain at the moment is at the point where I really would rather not move. If I could get away with not leaving my bed to go to the bathroom it would be ideal. Any movement triggers spasms and waves of pain. My fingers currently feel like a metal bar is being drilled down inside the bone. My back feels like someone is stabbing me and punching me. Everything else hurts, throbs etc but is not in the forefront like my back and fingers.
Apparently last night I woke hubs up by moaning and groaning in my sleep. Please remember he sleeps in a separate room to me. I vaguely remember him coming in and asking me if I was OK. I can remember feeling pretty cross at being woken up and just saying pain. I dropped off back to sleep making hubs even more confused than ever. He didn’t know if he should wake me and dose me up with medication or let me sleep. He decided to let me sleep as I had been so grumpy when he had asked me if I was OK. I don’t blame him, I can be very grumpy and aggressive if I am woken up from sleep for no good reason. Unless the house is on fire please just let me sleep!
So today yet again I am waiting for my GP to ring. I am going to be brave and just ask for the Morphine instead of dancing around the issue. I don’t care if he thinks I am a drug seeker or am a baby for not being able to cope. I can’t wait for a physio appointment at the hospital or the appointment with the acupuncturist. I am in pain now and I don’t want it anymore. I fully intend to only use it when absolutely necessary and to stop using it when I start the acupuncture and the physio. I don’t want to be on it all the time.
So wish me luck and hope that I don’t chicken out!