I don’t know what you imagine when you hear of chronic pain. Per WebMd, it is “pain lasting more than 12 weeks”. To me, it is a pain so sharp it leaves you writhing, a pain so severe all you want to do is curl up in a ball and cry, a pain so agonizing there is nothing you wouldn’t give to have it ease, just a little bit, the kind of pain that numbs you, every second, every minute and every hour of the day. I go to the hospital and I am asked about my pain level on a scale of 1 to 10 and I just never answer that question. Pain is one of those things that I find so difficult to explain because what do you say really? Especially when it is confined to an arbitrary scale of 1 to 10 because really? Surely?! Honestly?! Only people who suffer from chronic pain can understand why that scale is in itself ridiculously baffling! How do you quantify pain that makes you want to pull your hair out? That makes you unable to find remedy whether in the form of pills, injections or sleep? Pain that you just have to let be. Learn to live with, even as it varies with seasons but is just ALWAYS there.
I have so many sources of pain it’s hard to identify which one causes what. There’s lupus which for me means joint pain, rheumatoid arthritis for my joints with all the creaking and stiffness, fibromyalgia is now the epitome of pain with the muscles and the joints (again!)- it is a widespread pain and tenderness that at times has me cringing at the slightest touch. Then we have the relatively “smaller” side effects of the disease that cause pain. We’re talking Sciatica that is a sharp pain running from the base of the spine down the buttock to mid-calf (this one is IT!! Goodness gracious me!), Neuropathy which is basically feeling like electric currents running through my muscles and bones, skin that feels wet when it’s dry, pins and needles all over, Pericarditis that is the inflammation of the sac surrounding the heart causing chest pain.
I’ve been at it for 13 years! 13! That’s a bloody long time to live with pain but what’s the alternative? Pain takes you to some dark, dark places! Pain brings with it anxiety and depression hence completing the trifecta of misery. And there is no one more dangerous than the one fighting the three. The guilt, hopelessness, loneliness, sadness, despair, impact on lifestyle, abilities, capabilities and daily life, insomnia/ ‘painsomnia’ and dreading going to sleep because you just know how much it’s going to hurt and that when you get up, it will still hurt some more; the adjustments made to accommodate this lifestyle, the prolonged and never-ending fatigue on a mental, physical and emotional level……darn it!
The pain we go through as chronically ill persons is not one to be ignored or undermined. Kindly sympathize and empathize with us, understand that our bodies are hell! Living, breathing hell! That for me to say I’m in pain, to voice it when I’m in pain all the darn time, it is excruciating! Yet I smile, I push forward, I have to! I’ve had so many of my loved ones tell me, “If only I could bear half your pain for you, just to make it ever so bearable” because when you live with a person in chronic pain, you bear the emotional pain. And in my view, that is heavier and harder to live with. Trust me, I know.
“And the fury in all of this is that I’m ‘effin’ strong and I can still be me…But it doesn’t mean I’m not in pain.”– Lady Gaga, Fibromyalgia warrior.