To be honest it has been a bit of a rough week, I have been suffering with 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 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, EDS, MS, CPS, Lupus, lymphoma, etc etc 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 suffers and they will probably tell you I am under selling it. The best likeness I can think of is think about the worse toothache you have ever add, 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. Neuropathic pain is caused by damage or disease affecting signals from the nerves, this affects the somatosensory nervous system. Just to make life more interesting most traditional pain killers, 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 hesitated to help if I had said that. Likewise, I had a grump at my sister because she asked if I had seen the TV programme 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 programme 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 pain killers – I have had to be good at it because the pain killers I was on, that worked quite well, there is currently a shortage of them in the country so I can’t get them. Of course my sister was in her home and we were chatting on phone messages, 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 of the time to be OK and I have to realise that it is actually alright to say I am not ok, I am struggling today.