Persisting Through the Humdrum of Daily CRPS Management

Dear Audy,

Hello! It’s been a while since I could write, CRPS affected hands will do that sometimes.

Since my last ketamine infusion in May, I have been devoting all of my time and energy to strengthening my body and mind. Sounds corny, yeah? Actually, no. Corn, in all if its manufactured graininess, it’s something that I’ve been avoiding.

My diet makes a huge difference to how much I suffer with CRPS and how much I just live with it. There is no perfect-for-everybody human diet and there are plenty of diseases that food can’t cure, however, eating things that make my body feel better instead of worse certainly helps me to cope with my CRPS. I feel like I have to say that before I talk about eating on account of people, in general, seem to take dietary discussion as dietary advice and dietary advice as personal attack. It’s OK, sensitive ones, what I choose to eat has nothing to do with judging you.

I follow a Paleo approach to my diet. I avoid grains, sugar and processed food. I scoff down animal fats in all their glory and throw up in my mouth a little if you offer me a diet soft drink chemical cocktail. I’m not a zealot, I just eat this way most of the time, when I can. For me, enjoying life while avoiding processed food involves a fair amount of cooking. Cooking is a physical, hand-powered thing, and consumes much of my time and energy. I don’t do it because I feel like I should eat healthy in order to hedge my bets, I do it because after a couple of crappy meals, I feel like crap. It’s that simple, really.

Cooking sounds like something that should just fit into a normal life, however there’s nothing very normal about living with CRPS. Even though I’ve had success in lowering my pain levels with ketamine infusions, I’m still dealing with a lot of hand and jaw pain. Those two areas tend to set each other off. Typing in the morning can mean not being able to cook in the afternoon. Talking too much can make my hands sore. I know, I’m like the epitome of logic, you should probably bow or something…

Anyhoo… My point is that simply trying to cook on a regular basis can mean I have to limit other activities that wear my hands out. It takes some careful mental maneuvering to keep cooking when I’d rather chase creative pursuits, however the results make it worth continuing.

When my body is fed right, it’s much happier about moving. This is a really awesome thing because bodies are made to move. I’ve been able to exercise frequently enough that I’ve actually improved my fitness for the first time in years. I have muscles in my legs. Do you have any idea how helpful it is to have muscles in your legs?! They’re awesome. I use them for standing. Standing is awesome.

My exercise regime mainly consists of riding my exercise bike, or walking and then upping the intensity a little. I ride for two 30 minute sets at whatever speed is comfortable that day. It took a couple of months of riding regularly before I had enough leg muscle to cope with walking, before that I’d just end up with screaming knees and ankles. Over the past couple of months, I’ve gone from barely being able to walk for 20mins to being able to wander through the bush for hours. The bush part is important because the fresh air and trees take care of my mind while the exercise nourishes my body.

These guys help too.

These guys help too.



I haven’t told many people this yet because I have trouble believing it happened…but…twice now…I have jogged during my walks. Jogging is practically running! I ran on my legs. I actually thought I’d never do that again in my life and now I just want to do it again, again. A long time ago, before I had CRPS, I learnt to enjoy running and was a genuine fit person. Important note: before consciously deciding to learn to enjoy it, I hated to run. As a kid, I hated tiggy more than anything. Ugh! So much running, so little strategy.

It turns out that my adult body is a whole lot smarter than my stupid kid mind. Running is awesome! I plan to do more running, however I’m allowing plenty of time for recovery between attempts. The hardest part in strengthening a CRPS afflicted body is walking that tightrope between too much and not enough.

The final challenge that I have been devoting myself to is weaning off medications. Medication can be great and I’ll still be reaching for painkillers during flare ups, however I want my system as clean as it can be the rest of the time. I need to be able to feel what’s happening in my body if I’m gonna keep improving it. Years of chronic pain treatment usually means years of swallowing pills. I’ve been on so, so many…my body needs a break. It will be interesting to feel if this makes a difference during and after the next ketamine infusion.

Dropping medications is a process. Some of them take weeks to feel and then weeks to stop feeling. I’m still a bit heady and dazed since stopping Cymbalta last week, along with being super sweaty. You can’t really understand the joys of withdrawal until you’ve changed your sweaty PJs three times in a night and then resigned yourself to trying to sleep in your gross wet spot, under a wet blanket because it’s 4am and your partner has to go to work in a few hours and there are no dry blankets. I know. Sexy was the first word that came to my mind too.

I’m really hoping to get better at balancing being functional with being productive, I miss writing regularly and interacting and not shying away from my inbox, however I have to keep prioritising my physical rehab for the moment. My hands and forearms are slowly learning to be flexible and how to strengthen, it’s just a very slow process when they’ve been out of action for years.

Love & Just Keep Swimming,
Caf

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