I’ve been sliding backwards through increased symptoms of Complex Regional Pain Syndrome, losing functionality, enduring more pain and spending days simply trying to fight my way through the fog of confusion. I’ve been sick and tired and sick and tired of feeling sick and tired. I’ve barely been able to move, let alone exercise and I am missing the strength of body and mind that comes from being able to cook and look after myself. I feel lost, confused, useless and disconnected.
I was supposed to be feeling better by now.
There isn’t suddenly a magical cure for CRPS, however I was really holding out hope that my mid-December ketamine infusion would bring more lasting relief than it has. I was hanging out for the pain to lift, having had pain increases and functionality decreases for the previous few months. I was dying to “get back to it”. I was craving walks, talks, adventures and freedom. I was so mentally prepared to get up and go, go, go, that I forgot to expect that life would not turn out the way that I expected it to.
The infusion went really well. No major hiccups. My pain had been rising through the humidity of the night before, however it proceeded to drop quickly once the drugs started dripping in. Pain levels continued to lower throughout the day and I had a lovely rest.
I continued to rest over the next few days and my pain levels stayed nice and low. On the fourth day, it felt like time to get moving again and so I climbed onto my exercise bike for half an hour of gentle peddling. Just before I was done, I began getting some alarming shooting pains through my right foot.
I ran myself a post-workout bath with Epsom salts and sunk into the water to soak out whatever comes out of bodies after they’ve been put to use. It was very relaxing, until the foot that had doled out those little lightning pains decided to cramp, causing agony through my ankle and up my leg. I quickly grabbed my toes, yanking them in the opposite direction to the cramp and holding on until the contraction eased.
That night, the proper flaring started and after that I didn’t want to talk to anybody.
I felt like a failure. I didn’t feel like I live with an incurable and unpredictable disease, I just felt like I’d failed at life.
Logically, I know that’s not true. I didn’t choose to get sick. I didn’t choose life with chronic pain and I’m not still living with the pain because of laziness or as a result of bad decisions. Logically, I know that. These past few weeks though… all I have felt is undeserving and disappointed.
And then I came across this quote…
Quote taken from In today’s society, chronic illness is viewed as a personal failing
I read this and I thought “that is the thing that I’m feeling”.
The wave of expectation isn’t rolling in off the ocean of other people, it’s bubbling up out of myself. I feel like a failure because I feel like I have failed and the only way to fail is to have had an opportunity to succeed. My life is spent putting so much effort into coping with pain and illness that it’s easy to forget that defeating the pain is not a realistic goal and that my challenge is to simply continue coping.
I become impatient and distant and I feel an undercurrent of belief that I must have done something to deserve this – something that I could have avoided doing.
It would be easy and kind of logical to think that I set off the flaring by riding my exercise bike. It would be easy to conclude that I shouldn’t have moved or that I should have waited longer before exercising. Unfortunately, CRPS does not obey the laws of logic.
The truth is that I felt fine before I rode, I felt strong enough and like I’d recovered enough from the ketamine infusion. I felt ready, so I was ready. Had I remained inactive, the flare could have still come on from just walking down the hallway, the wind changing, sitting strangely, sleeping funny or just for no reason at all. The only difference would have been that I would have missed out on a dose of endorphins on my way to a couple of weeks on the couch.
This flare hit suddenly, powerfully and with days of storms and humidity riding into the battle like some sort of evil cavalry. I was trampled under the pressure of so much assault and could barely find the will to raise my head from my pillow. My refusal to lay down on the battlefield and give up sometimes seems like a burden instead of the blessing that I know optimism to be.
The two me’s in my mind bicker like elderly sisters. Keep going. Give up. Try harder. Give up. Don’t listen to her. Don’t listen to her.
Without hope I’d never get through any of the hard times. Recognising that I must continue hoping and trying through rising pain levels can be so overwhelming that I suddenly struggle to breathe. I have no choice but to keep trying and that means everything that pain makes more difficult is about to get a little more painful and a little more difficult.
My screams of frustration escape me like groans and are swallowed by a sky that’s vast and unforgiving. It doesn’t matter that it hurts. It doesn’t matter that it’s hard. I have to keep fighting for strength no matter how bad the pain gets, no matter how tiny the battle manoeuvres might seem, no matter how bleak the future appears.
It’s hard to admit when my health has started to deteriorate, again. It’s the again part that has worn me down. Having a chronic illness can feel like being a constant bearer of bad news. My dismay is at both needing to admit a decline to myself and also needing to inform my friends and family that I’m not doing as well as I was a few a weeks ago. I’ve often feel hesitant about offering up the state of my health for discussion by mentioning a change. The fluctuations so rarely make sense and I tire of trying to explain without becoming invested in what my current situation might mean for my future.
With CRPS, how I am today just doesn’t mean that much in terms of how I’ll be tomorrow, or the next day, or a week after a ketamine infusion. Practise has taught me that the best thing I can do is simply keep making the most of my abilities every day. I have to adapt activities around my fluctuating handicaps and adjust my attitude when life stops the pieces of my plans fitting together.
I’m happy to report that in spite of a stomach bug followed by some ridiculous heat in Melbourne, my pain levels have actually dropped back down again. I’m not going to read anything into that. I’m just going to enjoy it while it lasts.
Love & Flux,