When Everything Breaks Down

Dear Audy,

I have been dark for a long time.

I couldn’t talk to you, I couldn’t even look at you.

For the first 6 years of my illness the Internet was an amazing place where I could still interact with the world, but then I fell too far into the dark and the experience of being online changed. All of my experiences changed. Life was too much to deal with and I couldn’t think clearly anymore. I could hardly think at all. It was too much pain, too much loss and too entirely overwhelming for hope to glimmer through.

When you were sad, I started to feel like the world was ending, as though everybody was as wretched and miserable as me and that just made me feel sadder. When you were happy, I felt a sense of separation from the world that stabbed like a dagger to the gut, I felt jealous and angry and disappointed, as though everybody had chances and choices that I could only ever watch.

I have been stuck in a season of injury. A stumble here, a bump there and infections that take far too long to clear. My body stores these afflictions like trophies, keeping physical remnants of pain that are used to perpetually torment me and send me screaming into further incapacitation. When I can scream, that is.

All of my physical capabilities were suddenly gone. The pain grew and expanded through more of me, increasing in severity through my knees and elbows, shoulders and face. I couldn’t walk, I couldn’t sit up, I couldn’t hold anything in my hands, I couldn’t read, I couldn’t write, I couldn’t talk, I couldn’t smile… And then I couldn’t walk again. As soon as one symptom abated in the slightest, another angrily rose to take its place. I felt so utterly defeated.

Near the end of last year, I received my last income protection payment from the insurance company. I’d always held onto a sense of hope that by the time the money ran out, I’d have found some way to support myself. That maybe I’d be able to work again, or write, or study. I was so determined to not let chronic pain beat me that I’ve been living in denial about the reality of what I can and can’t overcome through sheer determination. I’ve failed to acknowledge just how much this disease has progressed since its beginning. It’s hard for me to recognise this without giving up. It’s hard to both accept reality and also keep trying to improve it.

All of me is affected by CRPS, all of me. I can’t simply learn to do something with the other hand, or learn to do something around the use of crutches or a cane because I can’t use crutches or a cane like I could when CRPS was just in my lower limbs. I can’t even push myself in a wheelchair. When I can’t stand on my legs, I just can’t stand. When I can’t use my arms, I just can’t touch anything. When I can’t use my mouth, I just can’t communicate. When the pain soars beyond believable levels of intensity, there is no working through it, there is just survival.

When the insurance money ran out, I lost another piece of me. I lost the ability to have any sort of independent choice, at all. I am not married, however, living with someone who loves me strips me of any rights to independent disability support. My increased incapacitation means that he doesn’t just have to support me financially, he has to do absolutely everything for me.

Every part of my being is burden on the people that I love. I might not have asked to live like this, but that doesn’t mean that I don’t feel guilty and useless and like I should be able to offer somebody something in return.

When I could no longer type, I lost another piece of me. A really big piece. I can only write to you now because my hands are finally allowing me to click a few times on the keyboard, which I need to be able to do in order to get around errors between myself and this dictation software. It’s not the same though, writing by talking is not the same as writing by writing. My words have always been my way of understanding things, my way of working through problems. Writing by talking might not be my way, but I have to believe that it can become so. It is a “way” after all, I have to believe that practise will help to make it “mine”.

I have felt bound and gagged for so long that I started to forget who I am. I have been waiting desperately for these days to come, for these days that bring enough physical function for me to be able to try to practise this other way of writing. It was such a long wait that I wondered if I was even a writer anymore, if I had ever been one to begin with.

Given enough time alone in her head, a girl can wonder about just about anything. I can’t trust most of the things that run through my mind because thoughts are the biggest and fattest of liars. If I pay too much attention to them, I end up spiralling further into depression. Instead, I must keep recognising thoughts as thoughts and not as facts. I must keep tricking my mind into focusing on other things, which can get rather complicated when I can’t move, can only feel pain and there really seem to be no “other things”.

Every day that I could, I pushed myself through the motions of performing the physical and psychological pain rehabilitation techniques that I have learnt over the years. Most days, I was barely capable of anything, I’d have to settle for simply breathing calmly because no matter what, there is always breathing calmly. Breathe and let go, breathe and let go…

Being able to function is dependent on faith. Sometimes, faith is also reliant on being able to function, as misguided as that may be. I had a lot of faith in the things that I used to be able to do before stumbling into this ridiculous rough patch of life cabbages. I could find happiness in a day if I was simply able to cook, or clean, or write, or exercise, or plan ways that I could use these abilities to improve my future existence. When all of those things fell apart, so did my faith that life would ever improve.

The sensation of hope seeping away is like a smothering of the heart. I could recognise that I was suffocating, but I couldn’t figure out how to gasp again. The will to fight burns inside a person; passion, faith and motivation are things of fire. Where once my flames had flickered, I could only find dull glowing embers. I continue to take some solace in their light, embers are not ashes. If I continue to focus, I might yet feel that fire once more.

I have been lost and I have been grieving, but I hope to find my way again. Where I am today is just where I am for now. Tomorrow could still be different.

Love & Hiccups of Hope,

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 9 thoughts on “When Everything Breaks Down

    1. Paula

      Dear Hayley recently I have been thinking about you and how much I missed your writing, this piece is amazing, you always seem to explain crps so well, I so wish you didn’t have to :( . I hope things improve quickly for you and you can do more writing for us, but mostly for yourself xxxxx

    2. Matthew Smith

      Hi Caf. Glad to know you’re still with us, at least. I got worried when you hadn’t posted after your return from Tasmania, and asked Carly to try and contact you but she couldn’t. Is your partner back from there now?

      Do you have sailing clubs for the disabled where you are? I thought of this because that is how Hilary Lister (who has RSD/CRPS and is paralysed after some operations failed – it was because of her that I found your blog to begin with) got into sailing and since then sails around Britain using a boat she can control without her hands. With the most disabled people they wouldn’t expect them to actually sail it, they’d just sit or lie on the boat while someone else did (on a lake, not on the sea obviously). She said being on the water helps with the pain although she still requires pain relief.

      (Sorry, it’s all I can think of, and anything else I could think of, you’re probably already doing or have done. But I remember her saying it was what turned her life round.)

    3. Margaret

      I’ve missed you and now I know why. If there is anyway I can help out,please let me know. My prayers are with you at all times Hayley x0x0

    4. Nancye Davis

      Wow, Hayley! You have such an amazing way with words. I also have RSD as I was reading your post I had tears running down my face because I could so relate to what you are going through and feeling right now. Some days it feels impossible to even pick my head up off the pillow, much less make it thru the day. I keep trying to convince myself that things have to get better, hopefully, but the rains keep coming. It’s so hard to keep going when every day is such a struggle. I keep going only for my husband and 2 kids (ages 18 & 9). If it weren’t for them I doubt I’d be here today. I try to take each day, really each minute as they come and do the best I can. I guess that’s all we can do. Sending hugs all the way from Kentucky to you! ❤

    5. Jen

      It’s like you take the words out of my head, put them in the correct order and written such a beautiful peace about how I FEEL! As I read, each section resonates with how I feel or have felt at some stage during my own troubles.

      It is truly a beautifully dictated and written post Hayleybird. You have such a talent for writing, one that draws the reader in and makes it relatable. I would much rather read less frequent blog posts than more that are not as beautiful as the one above.

      I look forward to seeing you soon and I hope we can help you put a few things back on track.
      Xx Jen

    6. Elle and the Auto Gnome

      I’ve been missing your writing too hon and wishing you well, hoping against hope that you were okay. I’m so sorry for the crappy rough times, I wish you did not have to go through them. I know what you mean about the importance of writing, and I too find that getting a post written makes me figure stuff out and see it more clearly than I did before because I’m trying to explain it in less messy terms than it is in my head! I hopehopehope that something can help to ease the facial pain at least. In the face we just can’t use our distancing techniques in the same way that we get so good at using with our legs etc. Crossing my fingers, toes, legs, arms and, er, eyes, for you, xx
      Thinking of you, sending oodles of love and a tewwibly Bwitish nice-cup-of-tea. Big gentle-fluffy hug from afar, xx

    Comments are closed.