Caged by Weather: CRPS in the Summertime

It has been a really, really long Summer. I feel ragged, like I have been forcibly jammed into this uncomfortable cart on the CRPS roller coaster for far too long. The peaks are too short and the lows are too low. It’s hard to keep moving like this, to keep rattling along the tracks, unable to see whether there are ups or downs around the bends. I barely catch a glimpse of my goals before I am careening by in my out of control carriage and they are lost to the ever-gobbling past.

The relief from my last ketamine/lignocaine infusion was a sweet crest on one of the few peaks of Summer. It was the break that kept me going, a brief respite from the seasonal torture. I was able to go for walks and visit the trees. I was able to push for strength through shorter recovery times. I was able to think and read and understand words, thoughts and emotions. I was able to appreciate it, however pain relief pays little heed to standing ovations and I soon felt myself sucked back under the humid weather.

20150222 Keep Going trees

Humidity is so much more powerful than I could have ever known in my life before chronic illness. There are so many parts of a body that can feel pain, so many pains that can be amplified by simple changes in air pressure and water in the atmosphere. Humidity can sneak inside, like a robber in the night, and cause a catastrophe of physical dysfunction before skipping away gleefully with no cops on its tail.

I watch the weather forecast with brimming tears of hope that become falling tears of fear when there is no cool change on the horizon. I anxiously await wind changes, only to discover that there is too much change and find my body respond by changing pains instead of relieving any. CRPS craves an atmospheric consistency that simply doesn’t exist.

There are so many different ways to hurt. Sometimes it’s a bittersweet relief to switch from burning edges to burning joints, to switch from stabbing to aching, from not being able to stand to not being able to hold a cup of tea. Other times, it’s just too much, too quickly, and too hard to keep up with. I try to find cause and effect between weather changes and symptoms but the lines are so blurry and the results so unwilling to behave the same way twice.

I get so tired of tallying symptoms. It’s exhausting to be unable to escape, it’s exhausting to simply keep breathing. It’s exhausting to try to explain and exhausting to feel alone in the suffering because it feels pointlessly cruel to share it. It’s exhausting to see the disappointment in others when I am not doing better. It’s exhausting to see my own queries for the universe reflected back at me like that. It’s exhausting to force myself to paint on my coping face because it’s more exhausting to feel like a victim. It’s exhausting when coping doesn’t feel powerful, but rather like desperation in disguise. It’s exhausting to have so much uncertainty boiling below my surface, amongst the pain.

The fatigue is so all consuming. It can keep me stranded in bed for much of the day, unable to be awake or asleep but just floating in a dense fog of existence and pain. There’s no fighting fatigue like that, it really doesn’t care how strong my coffee is, or that I’d like to be able to read and write, or that I’d like to go for a walk. I don’t feel like I ask for much, but the fatigue doesn’t care at all. It doesn’t care how small the requests are because it doesn’t live in our constructed human world of work and reward, of logic and reason. Fatigue makes up its own rules and I am just a puppet who dreams of escaping her strings. A very, very tired puppet.

I have to lie down now.

Love & Wishes,

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  • 7 thoughts on “Caged by Weather: CRPS in the Summertime

    1. Lara

      Oh Caf. This makes me so sad for you, because I know exactly how you feel. My symptoms and long Latin medical words are different, but that never ending disappointment cycle with fatigue and feeling like shit as far as the eye can see wrecks me just the same. And then I get sad for me, because it sucks so much, and it’s all just very sad. I hope you feel better soon. I really do.

      1. Hayley Cafarella Post author

        Thank you! I wish that you didn’t know what it is like, but I’m very glad for the coping company. It gets so hard when the weeks drag on and on and I feel like I’ve been sleepwalking and I can’t wake up. I’m off for another single day infusion tomorrow, so just really hoping that it will stick this time! Sending big hugs and hope that you will feel better too xoxo

    2. Della

      I’m so sorry you’re so exhausted, sweet girl! You’re not alone, but I know it feels that way. I hope so much that you’ll find some relief in better (for you) weather! That fog is so difficult to see anything through…

      1. Hayley Cafarella Post author

        Thanks so much, Della! It’s so weird to be trapped in such a thick fog in Summer, seems like the wrong season for it ;P Sending hugs! xx

    3. Lori

      Hi Caf, I read your Feb 22 statements to my husband for the first time. He has as he explained lived CRPS for the past 5 years through me. But when I started reading to him he was sure your writing was from a book. A way of saying you write very well. After listening he wanted to know why so much money goes into researching other illnesses ( not saying the ones he listed) and not enough to help CRPS patients. I said I am not sure. Good question. Maybe because it is so hard for us to campaign and get the word out there for CRPS because we spend so much time just surviving day to day and minute to minute . Sleep is such an important part to decreasing the amount of pain we suffer . Wishing all my CRPS sisters and brothers a good night sleep! God Bless you all!

      1. Hayley Cafarella Post author

        Thanks so much for passing on my writing and for your kind words! Raising awareness is so important because it’s the diseases that scream the loudest (for lack of a better description) that are more likely to gain interest from researchers and money to do the research, but you’re right, it’s so hard to actively campaign for awareness when just surviving is such a struggle! I just keep plodding along and hoping that the things I share are able to help the cause. Wishing you a good night’s sleep too! I often feel like if I could just get one of those then everything would be easier xoxo

    4. Marie McGowin

      Thanks for sharing your story! I have had CRPS for 4 years and am still learning! All our symptoms are almost indescribable! Keeping you in my prayers for daily relief! (((gentle hugs)))

      Would love for you to join JGF Organization: RSD/CRPS Support Group! Our goal is to support and help others and give updated information on this awful disease. We also chat with each other and share our stories’ and experience’s! Hope you decide to join us!

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