After living for 44 years I have managed to gather a bit of a vocabulary. I know some words. I even know one or two non-english words. I know a little bit of French, a tiny amount of Japanese, one or two Latin words and even a few gestures of sign language, but put me in a room with a doctor or have someone ask me “How are you feeling?” and I have nothing to say… not a word! All language skills are suddenly sucked right out of me and I just stare with a pained expression on my face. There are no words, no language, no gesture that adequately describes how someone who is chronically ill or in a relapse feels like, every single day of their lives… but we try. Mostly we have just learnt to smile and say “Ok.”
I know that there are Emergency Rooms in hospitals that have a language and codes all of their own. They will attempt to triage their patients and the wounded that come through their doors by asking you what your symptoms are or they will ask you to rate your pain on a scale from 1 to 10. This is another confusing and completely meaningless task to ask someone who has spent 10 years or more chronically ill and in pain. How do I tell someone I have never met, who cant see what is going on inside my body, that I feel like a truck is driving over my joints, slowly, and then reversing? But harder still when you know that is a normal day for me, but what do you say when the pain is worse? What number do I pick? Can I phone a friend?
I am at the point that there is absolutely NO part of my body… yes, I said NO part of my body… that is not affected by my systemic Autoimmune conditions and various other health issues. I cant even guess which one is “going off” (relapsing) at any particular time. (Neither can my specialists for that matter). At this point in my life if someone said you have leprosy I wouldn’t even feel any worse than I do any other day of the year. So I am never sure if I have normal death-like day or a particularly bad death-like day. The language is different one. Words have different meanings now. I speak a very different language now that only me, my husband, my fur kids and millions of other sufferers/fighters know.
During a recent relapse I found I couldn’t even speak. Literally. I could not form words, slurred, stuttered and couldn’t even remember what words I needed to say to tell my husband something was wrong. So I kinda made some sound which resembled “stststst…gggggg….hhhhh…..pppp” and pointed at my face. He just sat there and somewhere inside he knew something was wrong and that all he could do is hold my hand and reassure me. We are a ventriloquist act, him and I. He has become the voice I don’t have and the words I can’t find. He talks to doctors for me. He talks to friends for me. He talks to me for me. We speak Autoimmune fluently. We have a masters degree in chronic illness and a PhD in survival skills. He has even become able to read my thoughts and will bring me pain meds, water, eye drops, wheelchair, rub my legs, bring me something to be sick into, give me a tissue, wipe my spills and rub my joints, all without me saying a word.
Sometimes its hard to speak to someone who doesn’t know this journey (healthier people, high functioning people, able bodied people) as it can take a lot of energy to explain something so indefinable that it is almost pointless attempting to in the first place. But if I am amongst my Autoimmune family, Chronically ill family, no words are needed… they just ‘get it’. At my best I can sustain a conversation or interaction for approximately 2 hours before even this will be too taxing and my body will start to go into symptoms of exhaustion and stress. I will shake, I will slur, I will start nodding, I will forget words, I will become dizzy and confused and very, very emotional. About this time my husband will tell someone its time that they went and I needed to rest again. Back into bed and the oxygen machine, lights out. End of conversation.
Migraine days… well I don’t even want to write about it as my Neuro explained it beautifully when he said “the first hour you are scared you are going to die, and then the second hour you are scared you ARENT going to die!” Maybe he gets it? Maybe a little? Who knows? But that expression can be used for just about any flare or relapse in the past 10 years. My mother once said “… you can get used to hanging if you hang for long enough…” She is both right AND wrong. Some days I am very used to it. Some days I think I will never be used to it. I am sure there are many of you out there who know EXACTLY what I am mean before I even finish writing my sentence.
The language of the sick, the autoimmune, the chronically ill, the disabled and the in pain is a language that very few understand but thankfully there is another language that exists to help us communicate with the rest of the world. The world still untouched by such things. Its called the language of love and I am glad my husband, my friends, my autoimmune family, my fur kids and my supporters speak it fluently!