Sometimes, It’s Just Hard To Deal With Forever.

Dear Audy,

Thanks so much for the educational and also comforting responses to my last post. Jealousy and guilt are interesting topics, however I am feeling much too overcome at the moment to ponder either further. Emotional states are terribly cyclical, so I’m sure I’ll be back musing on the subjects sometime soon.

20091112 Me red dress Pola

Posting an old pic of me actually having fun (made polatastic using the addictive Poladroid). This was taken before the pain took over. That is the girl that I miss.

Today I write out of an overwhelming urge to communicate. Things have been really hard lately. My CRPS has been flaring as much as the Melbourne sun, which, for those not local, is a lot of seriously hot flaring. I write from my couch, in my dark lounge room, with the shutters down and the evaporative cooler (whom I call Evie) on high. I’ve added a little essential oil to the water so my house smells nice and less like water that has been spun through a motor.

My entire body has been flaring since Monday evening. My entire body. Once upon a time I wrote about my pain and its debilitating effect on my life when it burned only in one ankle and foot. Now, it’s all my limbs, my hips, my back, my shoulders, my neck and even my face. It’s everywhere and it makes it difficult to do everything. I struggle to believe that the pain is this bad, even as I feel it. I struggle to accept that my rehabilitation has met too many hiccups in the last few weeks and my condition has gone a little backwards.

Every keystroke as I write this sends a sharp bolt of pain through my fingers. Sometimes I feel like if I am pushing through pain and achieving things anyway, then it will be perceived by others that I am doing well, that if I can write this or complain about chores or walk the dog or anything that I wasn’t able to do before my time in rehab then I am doing well. This is not entirely true. The thing that I am doing well at is co-existing with my pain. What’s not going so well is eliminating any of the pain. What I wouldn’t give for some elimination…

I smile and I joke, I talk about the positive changes that have happened recently and the way that I am walking so much better these days. I try to enjoy my friends as much as possible and to get things into my day that make me feel productive. I work so hard at these simple things, these things that I used to do without even feeling effort and yet the whole time a part of me is thinking that it’s always going to be this hard. CRPS is a forever thing, unless some medical breakthrough saves us all. Forever is a scary word. To add the word forever to the acceptance that in reality I feel more and more pain as time goes on just about blows the top off my head. Fortunately the emotions don’t come out as a brain explosion, but they do shake me with some pretty forceful sobs more often than I’d like.

This is just a down period that I need to work through. I still have faith that if I work hard enough at rehabilitation then I will achieve a better quality of life. What I am struggling with is the immense sadness that the pain is causing me. I am so sad right now, but I am fighting it with all the tools I have. I am so sad to think that this pain that I wake to could be there forever. I am so sad to think that having any sort of fun could always involve extra pain. The thing that makes me saddest of all is the thought that I might never really have a good time again. Oh, I’m sure that I have amazing moments still to come in my life and that there’ll be great times with friends and family, I just can’t realistically see anything being as wonderful as the things I was able to enjoy before the pain took over. I fight really hard to focus on enjoying things and making the best out of my situation, however when flaring takes over my whole body the pain makes it really hard to feel good about anything. I hate telling you this stuff…it’s depressing, it’s so bloody depressing and I don’t want to depress you, but it makes it easier to enjoy the time I spend with you in real life if you’ve already read the sad stuff here. I will beat this sadness, it’s just a stage of learning to deal with the pain.

This month I am taking part in NaNoWriMo. This is a challenge to write a 50k novel in a month, without going back and erasing or editing anything. I am very behind, but proud of what I’ve already written. I shall try to add something to my wordcount today if my fingers and brain will function in unison for a while. It’s nice to do something that makes me feel productive.

Love & Determination,

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  • 3 thoughts on “Sometimes, It’s Just Hard To Deal With Forever.

    1. Christy Spence

      Hayley babe, I am so sorry that u r going thru this. As I read, it feels as tho u r taking the words right out of my mouth. I’m sad too. Forever is a LONG time and I SO wish that I could have just half of the old me back. I would even bargain that deal as I’m sure you and msny others would too! Just have RSD half of the time!

      Thank you for sharing your journey and PLEASE know that u r not alone in your pain and feelings. Any time you wish to talk, you know where I am.

      Sending less pain. Lots of love and many hugs,

    2. Maria (Tough Cookie)

      I am so sorry you are having a difficult time right now. One of the things to remember is that we are not promised “forever,” so worrying about accepting something in a time frame we are not promised is wasted energy… energy that we cannot afford to waste. I’m off to take an exam or else I would write more. I’m thinking of you xoxo

    3. Jeanne


      I have been living with chronic illness and pain for 27 years… since I was 13 years old. Forever is a scary word. Chronic illness is scary.

      The notion of not having a light at the end of the tunnel is daunting. I certainly go through sad times like you describe.

      The path to healing is a long journey. I have learned so much from other patients, like you, who share their stories and feelings with candor and help me understand my own situation better.

      I don’t look at “healing” as necessarily being a complete absence of pain because, frankly, I don’t ever have that. My idea of healing is to keep taking the steps towards wellness, to find what works best for my body, to listen to my body, and to accept that my life has changed but that is NOT necessarily a “bad” thing… even if it feels terrible initially.

      I have had to readjust my expectations and find a way to create a new normal for me.

      You are talented, smart, artistically gifted, and inspirational. You are helping others and yourself with your blog. Don’t push yourself too hard. Listen to your body. Our bodies are smart enough to tell us “stop” when it’s time to stop. It’s up to us to listen.

      Hang in there!!


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