Flaring But Bearing It

Dear Audy,

This week has been full of challenges! Mostly comprised of the complications of everyday life versus my nervous system.

I have been plagued by pain and fatigue this week. I had expected a bit of a crash at some point thanks to all of the activity of moving house, however it held off for longer than I anticipated. Delayed reactions are really common for me. Maybe that’s why CRPS gets so angry, it’s grumpy that it didn’t notice my body being “attacked” and then overcompensates by stomping around a lot. All over my senses.

Friday was the toughest. Burning went through the roof and I had one of those episodes where it’s really hard to breathe, let alone think or get a word out. These painic attacks (as is fitting to call them) have become less regular in recent months, but they still do happen. Usually when I am feeling particularly vague of mind and thinking a straight thought is difficult. It’s hard to keep a body calm when it feels like somebody poured glue all over the control panel.


(source)


The flare went down a bit overnight and I spent Saturday doing a lot of stretching, pottering around the house and resting on the couch. I felt a lot better by the end of the day.

Disappointingly, the pain is back up to about an 8/10 (it’s Sunday morning as I type this). It’s a muggy day, I think that has a lot to do with my CRPS symptoms arching up. Most of the bother is in my hands, they are puffy, shiny and uncoordinated. They are also a purply kind of red and softly curling into fists when left unattended. Silly hands.

Thankfully, I have gotten better at dealing with this level of pain. I’m not particularly stressed or upset, I don’t foresee any more painic attacks on the cards for the weekend. I’ll keep managing myself and my body will stop being such a hindrance soon. That’s the way these things usually work.

Hopefully, I can learn to stave off those painic attacks altogether. Doing so is one of my rehabilitation goals.

And so I am disappointed, thankful and hopeful. Those things don’t have to exist separately. Which is a pretty fabulous thing because disappointment is pretty awful without hope to churn up some motivation and move us forward.

I have some plans to get out and be social this coming week, I do hope that I will be able to follow through with them. In the past, this situation has been stressful (What if I can’t go? What if I flare while I’m out? What if I drive there and can’t get home? …) however I am doing my best not to play the “what ifs” game.

Instead, I am resting, focusing on pain management and doing everything I can to get my body fit and active. That’s all I can do in preparation for anything, really. If I do that and I still have to bail at the last minute, at least I can do so knowing that I’ve tried, it’s just that in some moments chronic pain takes things out of my direct control.

No matter what happens, I don’t need to get upset. I probably will at times, but I don’t need to. It’s not the law of the universe that certain situations or levels of pain need to make me anxious or teary. Remembering that helps me to cope with a lot of the disappointments that CRPS throws in my face.

Looking to the week ahead, I hope to regain control of my body and shaft this flare down to over-ville. I’d like the weather to play along, however I’ll do my best to manage around it. I really hope to make my play dates and make some progress in unpacking my sewing ‘n stuff room. Mostly, I just hope to stay calm and functional enough to go about my business. I think that’s pretty doable.

Love & Deep Breaths,
Caf

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  • 12 thoughts on “Flaring But Bearing It

    1. Jackie

      Sory to hear you are having a setback, yesterday we had a muggy day and oh I so know about that…. It knocked me 10 steps back lol….. Have an awesome week, and we can not keep thinking about the what if’s we still have a life to love of some sort :-)

      1. Hayley Cafarella Post author

        Thanks, Jackie! The humidity has floored me…literally. I sat down to do some deep breathing and ended up laying there for ages too dizzy to get up. Now doing my laying on the bed, it’s a bit more comfy here. I just hope it either rains or clears up soon! Also hoping that you are having a better day today :) xx

    2. Della

      “And so I am disappointed, thankful and hopeful. Those things don’t have to exist separately.”
      I like that. I’ve lived that, though I’ve probably never expressed it so well. It’s amazing the things this journey teaches us.
      I’ve been dealing with backlash from Thanksgiving and the extra activities that came with it. I try so hard to keep things simple while still enjoying what I want to do. Even then though, I manage to irritate the beast RSD and have to spend time recovering. I’ve been sleeping longer than usual, and still feeling tired during the day. I end up feeling guilty for sleeping so long, yet that seems to be what my body is demanding to help it recover.

      1. Hayley Cafarella Post author

        Hehe, that little realisation happened as a result of writing those paragraphs in that order. I realised I was using a lot of “something-ly”s! This flare is a killer, I’m stuck on the bed right now & if I watch my thoughts I just see a mess of randomness. So glad I have an iPhone to entertain me! I think it’s good if you can get the sleep, sleep is good for body repair and can be elusive, so don’t feel guilty for taking it when you can. The change of seasons always seems to knock me down eventually. This one also has the end of the year and holidays (for other people) and things going on. I usually find it a disrupted time for pain management. Here’s hoping the weather and the pain gods give us all a break soon!! xoxo

    3. Jen

      Hey hayleybob,
      I know it’s frustrating, and I feel each and every way the same. But you are stronger than you think you are, and I know your strong wil will get you through.
      Pain flare’s and butterflies!
      All my love, x

      1. Hayley Cafarella Post author

        Thanks, Gorgeous! I am getting through and coping better than ever mentally, but I do find it hard to express that I’m coping, but I am still dealing with a ridiculous level of pain, but I’m coping, but that doesn’t mean I am healthy or better? Chronic pain is confusing! I remember when I was more incapacitated I was totally jealous of people who seemed to cope better than me and I assumed that their pain was less, now I know better than that but it’s a really hard thing to get across :) xoxo

    4. Maria

      I hope you feel better! Do you take liquid chlorophyll? It’s nature’s anti-inflammatory. I up the dosage when pain rises.

    5. Sarah Bellany

      Beautiful post hun. It IS disappointing and yet weirdly comforting the moment you realise that you don’t need to get upset, that it won’t make any difference…and then later on when you realise it again and again.

      I’m still working on my head space, thanks for the inspirational words.

      Hope you have a good day soon xx

      1. Hayley Cafarella Post author

        Thank you! I’m not sure I’ll ever get done tinkering with my headspace, but it’s definitely worth the effort to alleviate some of the stress and pain. I hope you’re having a great day! :)

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