Empowered To Melt Away A Wicked Wednesday

Dear Audy,

Complex Regional Pain Syndrome can be such a big meanie. When I am doing well, it’s easy to forget just how bad the pain can get. Unfortunately, a fiery flare up usually comes along to remind me.

Wednesday morning I woke up in crazy amounts of pain. All over. Everywhere. The type of pain that infects my sleep and pulls me out before I am recharged and coherent enough to deal with it. The type of pain that makes tears pour out involuntary and every second breath a sob. The type of pain that is so intense that it confuses every thought and all I can see is the blinding red of agony and frustration.

20100903 backpain
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My prince was there to help me through the mind-blocked stage. It can take a while for me to calm down when I wake up in this sort of panic, the pain feels so intense that I go into a little bit of shock at all of the signals suddenly rushing to my brain. A heatpack, some painkillers and a comfy spot amongst my cushions on the couch were the first things in order. As my brain began to adjust to its pain inflamed state, I was slowly able to get my thinker going again.

At first, I felt weak, I felt so broken and beaten. When a flare strikes with sudden force it can make everything that I have done to improve my condition in recent times seem silly and futile. The negative thought patterns kick in when the pain does, confusing me with a jumble of worries and stressors that my mind convincingly elevates to a seemingly incurable level of despair. It can make me feel so tiny and the world so tall and terrifying, the fear is like an army of clamps all over my skin and I have trouble remembering how to let this unfathomably violating feeling leave me.

A couple of hours after waking, I was beginning to feel less afraid and ready to take on the pain using the Feldenkrais techniques that I have learnt. I felt ashamed for breaking, for allowing myself to be consumed by the sobs and sorrow. Logically, I understand that there are going to be setbacks, plateaus and pitfalls on the way to recovery, however this doesn’t always mean I can stay in control when the pain is pulling out its most mighty artillery.

I had to let that guilt go, just let it float away, out of my body and to wherever things go when they are gone. I had to assess my situation as it was, not how I expected it to be when I lay down to rest the night before, not how it was the day or the week before, but to honestly assess what I felt capable of and how I could most effectively cope with the nightmare playing out in my nervous system. I felt bruised to the bone all over and not functional enough to focus on being productive. Instead, I focused on remembering how much Feldenkrais has been helping me, I remembered that I wasn’t just learning these techniques to learn them, or to feel the effects during a lesson. The point of me practising this method of pain relief is for exactly that, to be able to relieve my own pain when I need to.

20100903 Sunshine Girl
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I spent the next two hours moving as slowly and easily as I could through some Feldy tracks that I was already familiar with, this helped to ease my anxiety about making the pain worse if I were to accidentally move incorrectly whilst attempting a new one. I followed the instructions on the audio tracks so gently that a spectator would hardly have been able to see me move. At first, it was still incredibly painful and I had to trust in my faith that these movements would leave me feeling better. The increase in pain heightened my internal physical awareness, allowing me to find ways of following the instructions in a lighter and gentler way than ever before. I began with a track focused on my neck and shoulders, then switched to a lower back track, followed by a gentle routine for the neck and eyes and then another track specified for creating softness in the hands and forearms.

My faith proved factually founded. By the end of my longest, solo, Feldenkrais session ever, I felt a million times better. I was able to move around feeling relief in many areas and a dulling of the pain in others. I was able to shower, dress, prepare breakfast and even do some light cleaning before I was father-chauffeured to an afternoon appointment. It was an amazingly unbelievable turn-around from my condition upon waking that morning. I could finally see my thoughts clearly again. As well as physically relieving pain, Feldy also seems to help my mind face forward and function more clearly.

The appointment was to hear the results of a recent MRI taken of my jaw. Apparently, I have a significant amount of arthritic-type damage in the left joint, the cartilage disc is shifted, the bone is worn down in the joint and I have even grown myself some nice little boney deposits in places that they really don’t need to be. The good news is that that sounds a whole lot worse than it actually is. For years, since this happened, my jaw pain as been attributed by my doctors to my CRPS, turns out, there is real damage in there that is really stimulating nerves that would rather not be jammed into the joint. It was nice to have a problem that could actually be seen for once. No wonder I have long had trouble sitting my jaw into its socket, there is a silly cartilage mound in the way! My oral medicine specialist explained that by continuing to wear my splint to stop me clenching and grinding my teeth at night, along with all the work I do to keep the area relaxed and by keeping a careful eye out for potential jaw hurting situations, I should be able to allow the joint to heal. The nerves that are currently causing me so much pain should eventually scar and form cartilage themselves, leaving me to go back to life of normal jaw function. Hurrah!

When I got home from the appointment, I figured that I would go flop. I felt so tired and it is quite usual for me to need to rest in the afternoons when I have been sleeping badly (a common occurrence). Instead, I felt empowered. I felt such a difference from the crippling pain that I had been in that morning that I felt like I could do just about anything – as long as I found a gentle and easy way to do it. Rather than going flop, I used my excess excitement (generated by further evidence that my condition is improvable and pride in having personally halted the pain along its path to total Caf domination) to clean. Yep, I slowly and steadily vacuumed and mopped a significant portion of my house. This helped to ease the anxiety that was still hanging around and trying to convince me that I was trapped and couldn’t even care for myself in my own home. Satisfied with that fresh feeling that clean floors create, I hit the rug for some more Feldenkrais.

Yep, even more. On Wednesday, I did close to three hours of Feldy. It was worth every second. I stopped the flare before it could consume me for days, weeks or months. I did that, and if i did it once then that means I have the power to do it again.

On Thursday I was able to be productive, run errands and generally deal with things that needed dealing with. By Thursday evening, my jaw was quite sore again but I was able to relax, not panic and still sleep reasonably well. Today I saw my Feldenkrais practitioner for a one on one session that has helped to settle this crazy, crazy jaw and afterward spent a couple of hours napping. I am sore now, but I am not scared. I can alleviate this pain and I choose to put no limits on my belief as to what extent. There truly is no better feeling than that of being empowered to alter my own situation, regardless of what any person or textbook says is possible for a person with CRPS. I might have to deal with plenty more setbacks, but the future doesn’t seem so bleak anymore, it feels like there is a way to regain control of my body and get back to living, instead of just surviving.

Love & Empowerment,
Caf

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  • 8 thoughts on “Empowered To Melt Away A Wicked Wednesday

    1. Maria (Tough Cookie)

      Good for you! The mornings are always the worst after not moving for a few hours, which is why immobilization of any kind is so bad for the illness. Even just a few hours of sleep can change the pain. I find movement to be the most helpful.

      Sending you love xoxo

    2. Shaz

      Hey Hayley, i am glad that you were able to cope with your own pain in the end, i could never do that i would just sit around screaming on the floor. Your so strong Hayley it amazes me.

      thanks for blogging 😉
      Love Shaz
      xoxo

      1. Caf Post author

        Thank you, Shaz! I am fairly sure that you would find ways to cope, you do pretty bloody well to cope with all the extra stress that is lumped on you!

        Much love xx

    3. Chanda

      The condition of my jaw is very similar to yours…the disk in one TMJ has long since popped out of place and fused to the bone. The condyle on that side has already been seriously ground down. I started splint treatment for that about 6 mos. ago, and my symptoms have completely resolved. What really helped was a daytime splint that I wear on the bottom. I also have the nightguard that prevents my mandible from sliding backwards as I sleep.

    4. Chanda

      Oh, and I also got a little fancy and got a cocktail of my own concentrated platelets injected right into the joint to speed the regrowth of tissue and get some joint space. Looks like it worked! Good luck!

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