I used to be so private, I wouldn’t want someone to know when I was pooing. Now strangers empty my portaloo and handle my ‘sex toys’ with gloves.
Yesterday I laughed hysterically because I have to vacate my house in 1.5 weeks and don’t know where I’m going, and my wardrobe keeps falling over, now its duct taped, wonky, all ridiculous. I forgot I could laugh like that.
Today when I woke up and yawn stretched like I do every day, my neck went into spasms, along with my belly and back. I remembered why I don’t laugh.
Yesterday I read that Jung got knocked unconscious and thought to himself ‘now I won’t have to go to school’, then spent 6 months fainting every time he did school work, until he decided not to. And that, he declares, it what a neurosis is. [Shared thanks to Jordan Peterson, who I’ve now set to snooze].
Is this a neurosis? Am I somehow avoiding life? When I think of life I feel so fucking weary, but I don’t think I felt like that before, before the crushing fatigue, pain, spasms, before the torture started hitting me every time I did something.
When people talk about the ‘payoff’ of being ill, like disability pensions or people preparing your food for you in bed, they don’t talk about the loss of privacy, dignity and independence, strangers constantly in your space…. or the trade off. Surely a cost benefit analysis doesn’t weigh up when you’re losing dancing, sex, chocolate, friends, sunshine, gardening, chickens, swimming, partners, muscle tone and a tan, make up and dressing up (or even wearing clothes at all), travel, family, baths and hair washing… which leads me to conclude that either my subconscious is self-destructive and or dumb, or those people just haven’t thought it through.
If I’m honest though, I was tired, heart broken, at a loss, and overwhelmed. I’m just not sure how much of that was because my body just…. couldn’t. I honestly don’t know how much of this complete shut down is like, some failure of infant attachment, some internalised trauma trapped in me, or withdrawal from life….
And I know I’m not supposed to say that, within patient communities who shun it as the antichrist due to decades of stigma and medical abuse, or to doctors and psychologists who will be responsible for writing the reports which make sure I have food and a house and help, or to the friends and family who are bewildered enough by this afflication that took away Angela, the one who wasn’t missing from their lives. Even if I did say it, and when I have, it hasn’t changed anything anyway, just sent me down a spiral of shame, engulfed me in a sense of failure, and made me wary of doubt in the eyes of those I depend on.
So it just sits inside me like this little lump of black coal, this worry. And it crops up whenever Jung or whoever else starts sprouting their opinion on how it’s mind over matter; it crawls out and eats up any remaining sense of self I had, that I am managing well, that I am a worthwhile human being despite difficult circumstances.
And so yesterday I laughed hysterically at how difficult and frustrating things are right now, laughed because I’m terrified but I’m breathing and stronger in my sense that I can face this and survive.
And now today the spasms, one tiny wrong move and they start again. Random twitching and cramping. Constant low level discomfort, to be carefully managed less it escalate. I’m uncomfortable and I don’t know why I would do this to myself, and I don’t understand what this could possibly mean.
I do know that the small twitch muscles that stabilise the spine (and core) are aerobic, their control is neurological, and they’re dependant on calcium, whose transfer is found to be disturbed in ME/CFS (related to threat receptors from stress or chemical triggers) and that these muscles are more dependant on mitochondria.
So it makes sense that when I try to use them, when I go above my aerobic threshold, when I get stressed, that this happens, if ME/CFS is an illness which is neuroimmune that affects calcium and mitochondria and aerobic metabolism. At least, it seems to, according to some researchers.
Having a medically unexplained illness leaves the door open to becoming stuck in the denial and bargaining of grief. If I had cancer, I still wouldn’t know WHY it happened, but I would at least know WHAT was happening. Here, I am without either explanation, and if I’m not careful, in comes the
crippling self doubt