I am so fucking sore right now. Burning pain is running up my arm from my thumb to my elbow. There is a dull ache in my ankles, that turns to a throbbing strum of bass pain in my feet. My shoulder is sparking, which can only be a result of whisking all them eggs. There is a bruised feeling to my skin, like after a bad sunburn. My head is hazy. I have spent the whole damn day tripping over things, because I am focusing on holding my body in an up right position without having tears leak out of my eye holes, all the while expending further energy on not letting my brain turn to the scrambled eggs it so desperately wants to mimic.
This chronic pain thing fucks with me on a special level, where I know who I WANT to be, but am constantly reminded that I cannot be it. And I work in a freaking medical environment. Bad call, Anna. Because I know just how awful medical people can be behind the backs of their patients with chronic pain. And, worst of all, I get it. People with chronic pain are HARD to deal with. They are short tempered, they are tired, they are grumpy. They are always ready for a fight, because so much of their life IS a fight. If you look like shit with no explanation, people think it is in your head. But, if you moan about pain when you look fine, people think you are attention seeking and possibly crazy.
People with chronic pain become protective of their pain, and of their perceptions of what people think about their pain. They read into what you say. They fight you, on the grounds that so many people have made them feel like they are lying or exaggerating or just generally being hard work. People with chronic pain can be a pain. They often have co-morbidities like exhaustion, depression, anxiety and bitchy resting face.
So the people who have to work with the people with chronic pain lose patience with it. They make snarky comments and assumptions. They get frustrated by the exhausting work that is being around someone who doesn’t trust you. Because, it is true. Us chronic pain people? we don’t trust medical professionals. We feel let down and insulted and just generally damned annoyed with them. Because they can’t fix it. And everything they offer to fix it has a down side…
Mindfulness training? if it doesn’t work for you, it’s because you are doing it wrong.
Exercise? If I had the energy to damn well exercise, maybe it would work, but I barely have he energy to do what I have to do to pay the bills!
Dietary changes? I like cream goddamit! I Like meat!
Lifestyle changes? By this, most people mean give up your stupid antisocial job, Anna. But, I love my job. I am good at my job. I am proud of my achievements in being able to do my job. I don’t want to give it up. Also, those bills we talked about? They are real, dude.
Pain killers? Antidepressants? Alternatives like prednisone, methotrexate and amitriptyline? They change who I am as a person and come with a host of unwelcome side effects.
All of which makes you sound like you are resistant to all offers of help and that you aren’t even willing to TRY to help yourself.
I made a decision many years ago not to take drugs for my condition as much as possible. And to be open and honest about my disease and my pain, while not bitching about it. Because I need people to be ready to make allowances if I am having a shit day, but I also don’t want them to get sick of me being useless. Problem is some days are okay. And some are not. Some days I want to moan. some days, I have no choice, my body moans, groans, clicks and otherwise gives the game away.
Mostly, I succeed. I take what medications I have to for the symptoms at hand at the time, and try not to be too sedentary when I have the ability to be active. I try to keep a balance between rest and play and force myself to acknowledge the difference between my limitations and my grouchiness. I fake it. I smile and laugh and pretend to be fine, because otherwise I am prone to falling into a state of self pitying, pathetic, sniffling.
Most of the time, it works for me. I push a little harder and find a few more reserves. I put a flower in my hair, lipstick on my face and make wry jokes and engage in much self deprecating humour. I am truly grateful that I have been lucky enough to have this disease AND a life. It could be so very much worse. But, sometimes. Some days, I just want to say….. Fuck you, RA. Fuck you sideways. Because I want MORE from life than you are letting me have. And I want to sit for one evening and not think about the impact of going for a walk today on the rest of the week, or the implications of going for drinks with friends on Friday on my ability to work next Tuesday.
I hope nobody was looking for any real insight from this piece, because honestly? I don’t have much myself. All I know, is that some days, like today, I want all the sympathy in the world, without having to tell you why I need it. Needy much?
Cheers for reading, people.