No one should have to live with pain. Campaign for Pain
Emotions. Pesky little things, aren’t they? Just when you think you’re travelling along nicely, BAM! An emotion hits you right in the gut. “But, I was doing so well. Where did you come from? And how can I get rid of you??”
One thing about living in chronic pain is that those pesky little emotions are no longer the annoying younger sibling tapping on your shoulder wanting your attention. Oh no. That’s not good enough for the emotions of people living in chronic pain. Hell to the no! The emotions of people living in chronic pain demand much more of your time and energy. They want to be front and centre at all times leading you down a path you know can only end in misery.
You might think that 23 years of chronic pain was more than enough time to learn how to handle ones emotions. It sounds plausible, right? Wrong. Until recently, the only thing 23 years experience had given me was just that, 23 years of built up, unresolved emotions.
Now, when I started a 2 week inpatient pain clinic last year my emotions were positive, good emotions. I was ecstatic. I was so happy I couldn’t keep the smile off my face. Not generally the look you’d expect to see on someone being hospitalised due to excruciating pain. But there I was, freshly admitted sitting in the meeting room waiting for the rest of the patients to arrive, unable to hide my excitement.
Of course I was happy. After all this time, all the surgeries, the physio, the medication, the tests, the tests, the tests. After all this time of wondering if I was, in fact, loosing my mind. I finally had an answer. Fibromyalgia. That’s what the doctors called it. And it wasn’t just my GP. An immunologist, a rheumatologist, a neurologist and a pain specialist. They all agreed, I had a condition called fibromyalgia and, although it could not be cured, it could be treated and managed. Hallelujah! Sing it from the rooftops! I have fibromyalgia.
Again, probably not the reaction most would expect from someone who has just been told they have a chronic, incurable, life-long disease. The thing was, I finally had a name. A name for the pain I was feeling. A name to explain the sleepless nights, the brain fogginess, the extreme tiredness. I had a name to explain all of the things that were happening in my body that, up to that point, were unexplained and, in some cases, not believed.
For months after my diagnoses I was happy. Happy that I had a name to put to all of these symptoms and a plan to manage them. Don’t get me wrong, I wasn’t signing with the birds happy all of the time. It was an extremely difficult period but at my core, even when I was at my lowest, there was still that part of me remembered “It’s because of the fibro. You have fibromyalgia. You know that now. They know that now. You will get better. You are getting better.”
So it was on this foundation that I arrived at the pain clinic and right out of left field was hit with the anger of some of the other patients. From my high and mighty position of newly-diagnosed-finally-getting-treatment-and-seeing-results position, I could see that these patients emotions were negative. They have not yet accepted their diagnoses and, until they do, they will find it hard to successfully manage their pain, I condescendingly thought. Personally, I couldn’t understand why they were angry. Yes, I’d been angry about my condition in the past. But that was before it had a name. That was before it had a treatment plan. Now was the time to be positive, not hold onto anger.
And so that was my emotional state for the next year. Whenever I’d become sad or annoyed or jealous of others, I’d remember it has a name and a treatment plan. Unfortunately there is one thing about chronic pain that can’t be talked away. The pain. That might sound obvious but when you’re in chronic pain, doctors ask how you are and how you’re coping in terms of your work life, your social and home life. The one thing they don’t ask is how you cope with the actual pain. As in, the hurt. Pain hurts.
Recently I shuffled slowly into my doctor’s office after a particularly big day at work. “I’m angry”, I said. “Really angry. I’m in so much pain. My legs are killing me. It hurts. Really bad. I’m so angry.” My doctor’s response was to ask what exactly about the pain was making me angry. Was it that I had plans that day which I could no longer fulfil? Was it that I could not have a big day at work without paying for it the next day?
No!! It was none of these things. It was the pain. PAIN, HURTS! And I for one and sick to death of being in pain. Take the damn pain away!
I take meds, lots of prescribed meds. I take supplements. I walk every morning (okay, 5 mornings a week). I do yoga. I stretch. I use a tens machine. I use heat pads. I use pain creams. I pace. I avoid situations I know will cause a flare. I rest. I have changed so many things at home and at work to ensure my body is at the right angle at all times / I’m not using energy when I don’t need to be / I can sit and stand when I need to. I do all of these things and so many more. Yet I am still in pain. AND IT HURTS. TAKE AWAY THE PAIN!!!!
No, I’m not angry about all of the things I have just listed. I’m angry about the pain. Because it hurts. Pain hurts. I don’t want to hurt anymore. Stop the hurt.
Chronic pain is said to be the third most expensive health problem in Australia, costing Australia $34 billion each year. You read correctly, $34 billion! (APMA, 2015)
Why do we not hear about this on the news? Why is this not an election issue? It should be. It needs to be. It is not just the fate of the 3.5 million Australians who are in chronic pain that requires this. It is the fate of the family and friends of the 3.5 million. It is the employers of the 3.5 million. It is the fate of all Australian tax payers who require chronic pain to be an issue. Make chronic pain an issue. Please.
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Make Chronic Pain An Issue
If you would like to make chronic pain an issue, here’s what you can do.
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