Reader, I crashed

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.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

24 thoughts on “Reader, I crashed”

  1. Oh honey, I am so sorry. I was wondering where you’ve been and hoping you are well. I don’t know what to say that might comfort you, but please know that you have many readers who care about you and wish you well.

    Liked by 1 person

  2. Oh honey, I’m so sorry that you’ve been so incredibly unwell – I really hope that the way things are now *doesn’t* end up being permanent for you. At times like these, I hate being all the way on the other end of the planet!

    I think that any doctor (or layperson) who thinks ME is a psychosomatic illness needs to get THEIR head examined, because it obviously isn’t! Just because they don’t yet understand an illness, doesn’t mean it doesn’t exist or only exists in the mind of the sufferer. Years back (gosh, over 14 years ago now!) I was having a really bad time with my anxiety, etc, and ended up being put on a psychiatric ward in the hospital. My roommate there had ME and I remember asking her about it and it was so clear that she was suffering – she couldn’t even get out of bed and was constantly struggling to do anything at all and I kept wondering why the hell they had put her on a psych ward when she so clearly needed to be on a medical ward, they weren’t even able to help her and just kept trying to put her on antidepressants. It was so fucking sad. I never forgot that roommate, and I really hate that over 14 years later, a lot of the thinking and treatment (or lack thereof) when it comes to ME doesn’t seem to have evolved much, if at all. The medical profession has GOT to start doing better.

    Sending you love and hugs from my little corner of the world.

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    1. That is truly sad. It’s not the first time I’ve heard of other young women with physical chronic illnesses being placed on a psyc ward as a kind of dumping ground. It’s a systemic problem, not just an issue of certain individuals being ignorant. I hope so much that your former roommate is doing well.

      I’d like it not to be permanent either, but I seem to have these relapses and never get back to where I was before. I used to get frustrated at myself, then realised if I had any other degenerative disorder no one would be as hard on me as I was on myself. So I stopped. And just hoping for medical advances.

      Sending so much love xx

      Like

  3. I am so sorry. MS presents itself similar. Except that once in your medical “file” it validates you to the world. But initially, until they read it documented, everyone thinks you look just fine……………..gee thanks world!
    I can’t imagine what you are going through. Why do they think you wouldn’t be better if it were a possibility??!! people!!!
    You are in my thoughts and prayers.

    Liked by 1 person

    1. It’s hard to not “present” as unwell – people have such a limited idea of disability and illness they sometimes won’t accept something unless it’s staring them in the face.

      And that’s the thing – why wouldn’t I want to be better?? Who the heck would want to live like this?

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  4. Thank you for sharing the reality of this illness that so many of us experience. The pushing we do to ourselves, often because we are bullied into not trusting ourselves to know what is best for our bodies. This happens all too often to women. I remember when my son, who was born with sensory issues, was under a year, and he wouldn’t eat food, he would just gag it out (I know gross) because he didn’t like the texture. The doctor told me to starve him…eventually he would eat’. That was his answer, ‘starve’ him. I just looked at him like are you %^&* serious?! I said nothing, but just walked out and never went back. There are good and bad doctors, just like there are good and bad everything else in this world. We have to learn to trust what’s best for ourselves, and I know you know that…I’m just rambling. I’m sorry you’ve had to pay such a steep price for what should have been a nice getaway. Hoping you’re on the upswing very soon, like today. Oh and one day my son just picked up a piece of food and started eating. What I learned about him is that he does things on his own time when he’s good and ready. We should all be so wise.

    Liked by 2 people

    1. Your poor son! Sensory issues are totally real, and can be especially amplified in children….what a horrible thing to say, starve your kid because he has differences. Guess that’s pure ableism at work, isn’t it?

      I’m hoping for an unswing too…but as you say, these things only happen when it’s time.

      Liked by 1 person

  5. I remember when I was pregnant with no.3 and I told my specialist that I was so much sicker when pregnant. I remember he leaned over until his face was 6inches away from mine and said, “No, when you’re pregnant you are much better because you have those extra hormones.” Eventually I found another specialists, a newbie, and young who listened and helped by listening. Nothing help or validates than being listened to. Our family’s hearts reach out to you Siobhan. Just do what you can and when you can. Love from Elizabeth and Ken xx

    Liked by 1 person

    1. Thanks Tim….the problem is that this model is accepted by the AMA and NDIS. So the reason I’m struggling to get funding is because they think precisely these things about everyone with ME…when the institutions of power use these models it has a massive impact on my life.

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  6. So sorry youre going through this relapse Siobhan. Thank you for helping me to understand ME better. It is so bizare & unfair that it doesnt get more recognition for the nightmare of a disease that it is. Like i CANT believe youre not getting NDIS funding! What the actual hell. I want to fix it for you! Lots of love to you friend.

    Liked by 1 person

  7. It’s hard to ‘like’ this, because I don’t. I’m so sorry you’ve felt so rough. The whole notion of a “latent desire to be unwell” is total bullshit, I agree. Relapses and flares and feeling, well, like absolute hell, are so hard. Just wanted to send some hugs and love your way, hang in there…  ♥
    Caz xx

    Liked by 1 person

  8. Hi Siobhan! I really like what you said here, although I’m’ so sorry that you’ve been having this relapse. When I read your feelings about how limited life has become, I relate so much. It’s so hard. Hugs from Seattle.

    I’ve been delving into some mind-body connection research lately, and it’s both interesting and frustrating. Interesting because of course there are connections, but frustrating because I watch people make the ignorant leap from “there are connections” to “any illness can be cured with the mind”. I have tried some mind-body techniques for my fibromyalgia/CFS (diagnosed with both, not sure if that’s correct or not). Not much helped until I tried a meditation technique that has helped my nervous system calm down a bit. I’m grateful for that and will continue practicing. That reduction in stress has increased the quality of my life, but my experience of having chronic illness has not been significantly changed. I still can’t attend school or work even a part-time job, and I’m still in loads of pain. All my physical symptoms are still the same. I have the same illness I always have.

    And yet in many forums where mind-body techniques are discussed, people who haven’t had success aren’t allowed to talk about it! Why? Because our “data” might discourage someone else, which would mean the technique wouldn’t work for that person! Ridiculous! Ableist bullshit indeed. In one Facebook group, the Gupta Program, I was told to stop saying negative things about the program. As in, stop sharing my experience (my share was that the beginning meditation for that program seemed to spike my anxiety very badly, and I wanted help with that – I never got help with that, I was just told to stop posting). They are rabid there about keeping “negative experiences” out, so that people aren’t “poisoned” into making themselves sick again by absorbing the negativity of others.

    It’s unethical. People who don’t get help are essentially told that it’s their own fault. When we can’t talk about how these techniques don’t work for many people, we can’t talk about why – that it’s because these illnesses aren’t all in our head.

    Liked by 1 person

    1. I really empathise with all of this, Hollie. It’s so tricky to find communities of people who are both supportive and accepting of differing experiences in chronic illness (even if they are perceived as being “negative”). I used to be part of a Facebook group who banned a member for saying she was having a bad day, but hoped a better day would come tomorrow, and that her friends and family would be with her in the bad times as well as good.

      I’m glad you have found a meditation technique that works for you. I practiced meditation for many years but found it wasn’t doing anything for my anxiety levels, so I stopped and tried other things that did (medication, distraction). Sometimes I wonder if those with chronic illness who so rigidly enforce their beliefs on others are merely reinforcing the ableist beliefs of society that have been thrust upon them. It must be a really terrible place to be to hate yourself so much because of your disability that you start attacking others with that hate. I mean, how hard is it to encourage people and accept that something different might work for them?

      Liked by 1 person

      1. Sometimes I wonder if those with chronic illness who so rigidly enforce their beliefs on others are merely reinforcing the ableist beliefs of society that have been thrust upon them.

        Yes, I feel as though I see this in a lot of these groups (many of which I’m no longer in, it’s just too stressful). If a person does feel they’ve had some success with a technique or practice, they’ll jump straight to the belief that if everyone did this, they’d get better, too. Boom, now they’re on the ableist outside, judging in. And then others jump on the same bandwagon, and off it goes…..it’s frustrating. There doesn’t seem to be a way for two groups to co-exist: the group that has found some measure of success with something, and the group that hasn’t. It’s as though the first group entirely negates the validity of the second, which is neither logical nor fair.

        Liked by 1 person

        1. It would be almost too easy to believe if X technique/treatment/what have you worked for you, it must work for everyone…therefore, everyone isn’t trying hard enough to get better, therefore, they want to be sick. The truth, that life isn’t fair and some people will be sick no matter what they try, is almost too hard to bear.

          Liked by 1 person

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