Having tried to forcibly remove my friend, myalgic encephalomyelitis, when she showed up on my couch a number of years ago and having failed miserably, I unwillingly allowed her share my space with one condition.
She would never become me.
She could sit and stare, she could share her nausea, her muscle weakness, bone pain, sore throats, sore ears, swollen armpit gland, headaches, frequent night time urination, debilitating fatigue, lack of concentration, brain fog, constipation, electric shocks, torso spasms, the inability to gauge temperature, the super sonic hearing, light sensitivity, she could do as she pleased, but I would never become her.
Thankfully, being a stubborn twig, I’ve never waivered.
Accepting my challenge, she added one condition to the mix, The Invisibility Clause.
Of course, her varying symptoms on differing days are the most taxing aspect of her presence in my life but this clause, this invisibility thing, well it too presents its own complications.
You see, for the most part, I look like any other 33 year old woman. How I look isn’t indicative of my illness, everything ME does, she does under my skin, my outer shell reflecting little as to her presence in my life.
There are bad days when my skin is grey and my eyes are hanging from my face, on those days, people admit I look “a bit tired”. And there are the really bad days, the ones when I’m holed up in bed, barely able to move from my bedroom to the living room or kitchen, but no one sees me on those days. Only my husband has seen me then. Lucky him!
It amuses me when I meet someone I haven’t seen in a long time, or like recently, when I meet someone I haven’t seen since my pre-ME days. The first thing said to me is “you look great” and it’s said in a shocked tone, as if I should be sitting before my acquaintance with an arm hanging off. Then there is the microscope analysis and comments such as “your skin looks great”, “your hair looks so healthy”, “you are in such good form”, “you are so upbeat” and again that one “you look great.”
As I have a warped sense of humour, I laugh in response, thank the person and make a joke about my multivitamin and how it’s doing all it should to my hair and skin, yet doing little to my inner being.
To explain to the person, that actually, I’ve really minded myself the last week or so, in order to be sitting before you, and also, when I go home, I will suffer for this outing, well, to explain that takes the fun out of our meeting and as I don’t leave my home all that often, or have someone visit too often, I want to enjoy that time together and use my energy on the laughs and catching up. Not on the ins and outs of this annoying friend of mine and her Invisibility Clause. So instead, I tell my acquaintance, ME doesn’t define me, she’s a part of me, but she’s not me.
Complicated, isn’t it!