An Old Treatment, A New Hope

Dear Audy,

Many moons have passed since I first gave up hope that doctors could help with my CRPS. I’d tried everything, you see, everything that was available. I worked hard at physical rehabilitation. I attempted to keep moving and build strength. I practised Feldenkrais to ease pain and improve neural pathways. I learnt new ways to relax, to let go and to continue coping with the trials of constant pain.

Each time I slid backwards from an improvement, doctors concluded that either the medicine didn’t work on me, or that I had psychological issues preventing me from trying hard enough. The repetition of this cycle ran through several doctors and twice led to me being shown the door that opened from the doctor’s office into a cold, painful world of loneliness and despair.

A wet Baby Zhen Zhen
I was a frazzled panda (click image for source)

After a while, it was hard not to believe them. Was my condition too obscure to be treated by modern medicine? Was I trying hard enough? And so, I’d crumble for a while and then I’d try even harder. I’d find a new doctor, one that was willing to learn with me. I’d find a way to improve, to take the first step upwards and to climb even higher before the next fall.

Finding motivation to heal was never my problem.

I have a theory as to why chronic pain patients often encounter the attitude that they are being lazy about improving their own condition. It’s because a lot of people actually are lazy. There are lazy people who are sick or disabled, same as there are lazy people who are perfectly healthy. Some of these people are miserable and some are quite content, that’s their business. The important thing is that none of them is a representation of any other individual.

It can be hard to remember that. As hard for professionals as it is for the rest of us plebs. We love to generalise, it makes understanding the things around us easier. In searching for a non-vindictive reason why some doctors might treat a patient terribly, it occurred to me that perhaps those doctors are merely unaware that they are blinded by patterns.

Could the answer be that simple? Doctor sees a lot of patients that are not taking whatever steps are possible for them to improve their condition. Then, doctor sees patient whose condition is declining and assumes, regardless of what their mouths say, that one of these things is exactly like the other. I mean, they look the same, right? Sick, miserable people. It’s easy to assume that the one proclaiming to have followed orders is suffering from a lying mouth, rather than real but immeasurable symptoms. It’s much harder to approach each patient with a fresh slate and an open mind.

I guess some doctors are lazy too.

For over a year, I pulled myself out of the cycle. I couldn’t find the point of continuing to pay steeply to spend a few minutes with a specialist that could only offer me repeat prescriptions for meds and rehab. I found that I was doing better on my own. I used the skills I’d learnt and I did the best that I could. I improved a lot before the big crash of 2013.

After months of being at my lowest, unable to look after myself, unable to do much of anything at all, I desperately looked back towards the doctors. I returned to the last pain specialist I’d seen, only to be directed back towards pain rehabilitation programs that operate at a beginner level. I was already well advanced at “doing my exercises”, “pacing myself” and handling psychological pressures. I didn’t feel like the answer to my decline in health was to have somebody re-teach me the things that I was already doing.

The CRPS had outgrown the rehab, it was bigger and uglier than it had ever been before. I needed something more than inspiration or a kick up the butt to bring me back.

For a long time, my GP had been recommending that I see a local pain specialist. I was not very keen. I just…couldn’t be bothered. I couldn’t be bothered rehashing my long and complicated medical history to a new doctor when there was no hope, no new drugs, no fancy new treatments. I had to reach utter desperation before I could even consider beginning again with a fifth pain specialist.

Mostly, I made the appointment to placate other people. You know, the people who love me and wouldn’t let me give up. The ridiculously amazing people that were looking out for my wellbeing when I was too lost to do so for myself. I waited months for the appointment and still, the day before, friends and family had to talk me into going through with it when I just couldn’t see the point.

I am so grateful for their hope, it was lighting the way to a brighter future that I no longer believed in.

My new doctor has been the most helpful pain specialist that I have seen. No, there aren’t any new and amazing treatments for CRPS. However, there is this older one that he was willing to try again…

It turns out the undesirable reaction that I had to my first ketamine infusion was not the giant stop sign that the rest of the doctors saw. My reaction (a fairly severe withdrawal process, you can hear the story from past me here) was not “impossible” as I had been told by the specialist that oversaw it. It was simply a reaction that was not the one we were hoping for. It didn’t mean I needed a giant red KETAMINE stamped in the allergy section of my medical file. Most importantly, it didn’t mean that another infusion would have the same result.

The thing about the new doctor is, he’s logical. He completely validated my previous experience with ketamine and agreed with me that one messy infusion was not enough to conclude a drug allergy from. He didn’t treat me like a drug seeker for wanting to try it again. One failure was not enough to prove that ketamine would always fail.

So we did it again, differently. Mid-October, I was admitted into hospital for a five day ketamine infusion. It went well, but I shall save describing the experience for another day.

This post is about hope. I lost hope in doctors, in the medical system, in my body, in my life… Had I not had wonderful people pushing me to continue trying new doctors, I’m not sure that I would have done it on my own, which would have meant missing out on the best opportunity for improving my CRPS that I’ve had in years.

I’m so glad that my new doctor did not make presumptions about me. I’m so glad that I didn’t pigeonhole him before he could help me.

I’m so relieved to have hope on my side again.

Love & Opportunity,

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  • 7 thoughts on “An Old Treatment, A New Hope

    1. Lisa Moon

      I’m so pleased to read this, Caf! How wonderful to find a non-lazy doctor, one willing to look past an unsuccessful attempt at a *known finicky* drug (ketamine).
      Look forward to reading more in the future, but mostly thrilled to hear of HOPE.
      Yours a mine, too. Just in time, hooray.

      xox <3

      1. Hayley Cafarella Post author

        Thank you! It’s so weird to have this option again after they closed the door on it so long ago!

    2. Della

      I am happy beyond words that you are regaining a grasp on hope!!! I’m also very interested in the differences between now and the last time with Ketamine. I’ve considered it and your earlier experience made me nervous of it.

      1. Hayley Cafarella Post author

        Thanks Della! This infusion was very different to the first one, I’ll describe it properly in a post but safe to say it was much less scary :)

    3. Ross

      Good to hear that there is hope and that things are going better! Having a specialist that hears what your saying is so important. The team of specialists that I see are that way. They actually listen to what I’m saying because they understand CRPS. Have a great Christmas and New Years!

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