Talking is for the Lucky People

Dear Audy,

Life is lonely without conversation.

CRPS has been slowly crumbling my body since I was 24yo. With each progression, I found ways to pace out activities and push through the pain, while I still could.

But there are limits to how much I can push through without making things worse. Limits that keep shrinking.

I’m just trying to cope, it’s all that I ever do. I feel at fault for not healing, not winning. I feel like I must have The-Secret-ed myself into this painful life. I feel like I didn’t appreciate freedom and health enough when I had them.

I feel like I should be able to improve things, to be mindful, let go and find happiness in just being alive. I feel like whenever I get to a place of acceptance or comfort, those physical limits go and drop a little lower.

I feel hurt and abused by fate and bitter and guilty for not being able to keep that shit in check.

My ability to communicate is now limited to mumbling a word or two and causing a drastic increase in pain, or briefly text typing. It’s the predictive text feature and smaller movements that mean this hurts less than keyboard typing.

I figured that if I could text, then I could blog using the WordPress app, even if it’s just thought ramble, even if it’s short and pictureless and linkless and a different way of blogging than I’ve practised before.

Text typing doesn’t not hurt though. I can barely remember what it’s like to do anything without having to physically suffer for it.

Just typing on my phone.

Just drinking a cup of tea.

Just brushing my teeth.

I can’t tell you how much I wish I were exaggerating, how much I wish that what I suffered from was the motivation problem that so many people who have never experienced my pain believe it to be….I fucking wish it was that easy.

Every activity that I do begins with a stretching/Feldenkrais warm up and a lay-down-on-the-heatpack cool down. It takes hours.

Every day, I try to move as much as possible and I try to relax in between activities and after I’ve done all that I can.

My best never feels like enough.

I do it anyway, because all I have is this faint hope that if I keep working at being a good little chronic pain exercise doer then eventually things will start to look up again.

Maybe I’ll be able to drive again.

Maybe I’ll be able to go for walks again.

Maybe I’ll be able to cook dinner again.

They aren’t big dreams for normal humans, but I can’t realistically hope to achieve anything higher on the dream staircase without passing over those steps first.

I must climb on in silence, because I can’t fix what is wrong with my face. All I can do is hope. A hard knock to take, but there it is.

Talking is for the lucky people.

Love & Desperation,
Caf

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  • 10 thoughts on “Talking is for the Lucky People

    1. Della

      Sweet girl, I feel truly blessed to be able to talk, eat, drink, walk at least some… I’m so sorry!! Praying for you and hoping so much for you to improve soon!! You ARE doing your best, I just know you are! I know well that feeling that “maybe if I did more, things would be better..” but it just doesn’t work that way.
      Love and air hugs

      1. Hayley Cafarella Post author

        Thank you! I love how much you can appreciate, even though I know you struggle too. Also for the reminder that not winning doesn’t mean that I’m not trying my best. xx

    2. Julie

      I am so so sorry for all your suffering. It is truly unfair sometimes. I have had RSD for almost 14 years and not a day goes by without miserable pain. I will continue to read your blogs and pray for some relieve soon.

      1. Hayley Cafarella Post author

        Thank you, Julie! I’m sorry to hear that you’re struggling with this monster too. Thanks for reading and understanding, sending hope that some better days will come your way. xx

    3. Lori Joksch

      Hello Caf, My story began in 2009 with a wrist
      Injury. Very long story short. RSD now full
      Body after 2SCS. Spend most of day in bed
      Avoiding and sleeping thru pain. Have 4 Boys
      And use to run nonstop. Dr Joshua Prager
      Wants to do Ketamine infusion . I am very nervous
      Especially after reading your reaction.
      Take care! God bless you for being my voice!

      1. Hayley Cafarella Post author

        Hi, Lori! I’m so sorry to hear that you’re dealing with a full body spread too, especially as a result of attempted treatment. I was very lost after ending up worse off after the ketamine that was supposed to help, it’s just so frustrating! I believe my infusion was mismanaged, there was absolutely no investigation afterward to find out what I reacted too and the dr kicked me out for not getting better, stating that “CRPS doesn’t spread” (hahahaha!) and proving that he shouldn’t be treating anybody. So many people do have wonderful results from the infusions, I’m sending lots of hope that you end up being one of them. xx

    4. Lara

      Hey Caf,

      This sucks so much. I don’t know how to help but I want you to know I’m thinking of you.

      Lara

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