I suspected it would happen, right from the beginning when I planned my trip to Geelong. It would be a complete disaster or a wild success, but I figured I was in a downward spiral anyway so I may as well go out with a bang. And that I did.
It has taken me so long to write this post. I went away in April, and wrote about it in May. I wanted to be sure of what had happened, and let the pieces settle before I could put my experiences into words. These things progress slowly, and it wasn’t until at least a month after my trip that I well and truly crashed. I’m still unsure of just how much I will have to pay my poor body back for my extravagance.
When I say I crashed, I don’t just mean a few days in bed. I mean, really, a relapse – a significant and likely permanent reduction in ability. The week of the crash, suddenly even an unassisted daily shower (which I know I am so fucking privileged to be able to achieve) was beyond my capabilities. I required assistance to perform what was once well within my scope: pouring a cup of tea, turning the taps on, making a sandwich for lunch. And constant supervision was a given, seeing as I was collapsing to the ground on a frequent basis, lying helplessly, unable to pull myself up of my own accord.
Weeks of this turned into months, and I find I can’t quite describe exactly what I have lost, as I can’t remember what I could do before. I’m sure I didn’t need folks around supervising my showers, lest I collapse. And I know I could walk around a small shop, sans wheelchair – but now I can’t go out without one*. This has naturally reduced my outings to once a week at best. Even sitting up in the car for a drive is an effort.
I don’t really regret going to Geelong, in the sense that I know I had to. I learnt that while I am still sick, I will never achieve any of my “well” hopes and dreams. What I desired so much – to go away, to be in a shopping centre, to be like my old self again – was truly a new kind of torture with ME. There is a certain limit to which I can perform activities and have some semblance of fun without my symptoms engulfing me, and I well and truly passed that limit.
Going to the shops was not fun, when I was delirious with fever and feeling like I was going to projectile vomit everywhere from the effort. Even lying in our quiet unit was awful, as I dropped in and out of consciousness from the pain, just the effort of being in an unfamiliar place, trying to rest. When I arrived at home, all I could think was, this nearly killed me, and I don’t have that much left in me to try again.
I thought, perhaps, that with some distance, I would look back and remember the good times and forget the bad. But there isn’t that much good to remember when it is tainted with how I felt. And honestly, all I remember is trauma. The trauma of trying to sleep at night, in pain and burning up, my body convulsing, thinking, I must ring dad to bring me home tomorrow because I can’t go on like this.
To some extent, I had to do it to prove to myself that I could, or couldn’t. And as painful as this is to admit, I felt I had something to prove to other people. When you have been through trauma, you cannot really switch those voices off in your head. There is always a nurse in the background, screaming at me that I’m just a lazy, attention seeking drama queen, putting this show on for everyone’s benefit. I try hard because of the kind of person I am, but also to prove to these voices that I’m not just some entitled bitch desperate for drama. It never works.
Those who follow the PACE (psychosomatic, or “psychobabble”) theory of ME would argue that my “illness” is caused by a latent desire to be unwell. That I’ve been sick for so long that my mind will not accept any attempt towards “wellness”, and that I have to ignore my symptoms, which are a fiction created by a mind desperate to play the sick role, and push through to truly “recover” from my psychosis. In their minds, I and every other person with ME concocts symptoms to experience, because it is easier than getting up and getting on with their lives, like everyone else.
Obviously, this is offensive, unscientific bullshit. But, it is bullshit which is still adopted by the major medical bodies in Australia, including the AMA and NDIS. And this bullshit is the reason I am so unwell today. I often wonder what would have become of me had I refused the course of graded exercise therapy thrust upon me by an ignorant, ableist, over-zealous physiotherapist. I was a much different person back then. Still sick, of course, but not in the way I am now, or have been ever since I pushed my body through that abysmal fucking program.
It’s hard to undo a lifetime of social conditioning, or eight years of sustained ableism. It’s equally hard to accept, as a person who tries pretty darn hard at everything I do, that nothing I do will make a jot of difference in my health until more scientific discoveries are made. And for that to happen, “science” as a whole has to accept that this devastating illness is not a fiction of the mind.
So, back to Geelong. It happened once, and never again. I’ll consider myself lucky if I can continue leaving the house as infrequently as I do now, and don’t become permanently housebound. It was my last hurrah – my last hope that maybe I could make one of my dreams come true, that I could advance in life or claim a little back from this illness. I could not, and did not.
If anything, I proved how all-encompassing this illness is, and just how poor my quality of life is right now. It’s an uncomfortable realisation, moreso for those who cannot fully accept the reality of long-term chronic illnesss. But, that is its nature, and to suggest otherwise would be an insult not only to myself but also to those beautiful, hard-working people, put to bed 24/7 with ME.
*Barring one small cafe which has low couches and a walking requirement of about 2 metres. God bless.