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Hey, Chronic Pain Warriors: It’s OK to Say, 'I Am Having a Bad Day'

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To be honest it has been a bit of a rough week. I have been having a lot of exhaustion and pain. Pain is something I don’t talk about often. Yes, there is the “normal” joint pain associated with arthritis and constant subluxations, however, the pain that I, and to some extent we, as a community of chronically ill people don’t often talk about is the neuropathic pain. Neuropathic pain is incredibly difficult to describe. As I said it is felt by many of us with long-term health conditions and it is not like a bone pain, or a headache or pain from an injury. It is a constant gnawing pain that feels like it is burrowing into your soul.

You may think I am exaggerating with this description but ask anyone who has it and they will probably tell you I am underselling it. The best likeness I can think of is think about the worse toothache you have ever had, multiply it by 100 and then think about it not just in your tooth but in an entire part of your body, for me it is my pelvis and legs, pretty much from the waist down. Just to make life more interesting, many traditional painkillers such as opioids don’t touch it. I take anti-epileptic (seizure) medication to try and keep it at bay, but sometimes it gets too much.

To quote a My Chemical Romance song — I am not OK. This is definitely something I need to learn how to say. Last night my husband grumbled at me because I asked him to turn off the TV. What I didn’t say was that I was in so much pain that the thought of getting up and turning off the TV was enough to make me cry. I know he wouldn’t have hesitate to help if I had said that. Likewise, I had a grump at my sister because she asked if I had seen the TV program about the doctor who stopped taking all medical drugs. My sister wasn’t having a go at me, or suggesting I should try it, or any other kind of insult about my illness, she was just asking if I had seen a TV program that she had enjoyed. However, because I was in so much pain I was moody and took it to be an insult.

See, I usually do so well at managing my condition without painkillers — I have had to be good at it because there is currently a shortage in my country of the painkillers I was on that worked quite well, so I can’t get them. Of course, my sister was at her home and we were chatting on phone messages, and she didn’t know that I had had to take painkillers that evening or that they weren’t working and I was miserable because I was in so much pain that even the weight of the duvet on my leg was agony — all because I didn’t tell her.

I try so hard all the time to be OK, and I have to realize it is actually all right to say I am not OK — I am struggling today.

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Originally published: October 21, 2016
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