Experiments While I’m Waiting for a Cure
Do you remember the first question you asked when you were told you had AS? For me it was immediate - “Is there a cure?” I remember the kindly face of my doctor as he answered, as optimistically as he could, that this was not yet the case.
I’m a problem solver and this was frustrating - why had I ended up with a disease with no solution? Where was the research headed? Wasn’t some lab somewhere on the brink of a discovery that would end my pain and give me back my life?
The medication initially relieved my pain but soon it became less effective
I began experiencing some unwelcome side effects. My specialist encouraged me to progress onto different drugs but I was reluctant to settle for symptom management with greater risk. I still wanted a cure! Surely, there HAD to be something else out there?
I began exploring every possible option, spending hours online trawling through research papers and personal stories and talking to anyone that knew something about autoimmunity. I began experimenting with food, supplements, movement, and meditation. I learned how to ferment vegetables, changed my cleaning products, did hydrotherapy, and fasted for days. I became open to every possibility, driven by the idea that the magic cure was out there somewhere; it was just a matter of time and persistence until I found it.
Some of these experiments helped for a while before symptoms returned, others were a discouraging waste of time and money. Practices that worked well became part of my routine, others were discarded.
I rode the rollercoaster of hope and despair for years, intent on defeating this disease and getting free of AS forever.
I was so focused on my quest for perfect health that for a while I didn’t notice something significant had happened. At some point, I had stopped getting worse and started getting better. My painful symptoms and reliance on medication had been steadily dropping and my quality of life had markedly improved. While I had been tearing my hair out because I ‘still wasn’t cured’ the tide on my illness had turned.
Can I pinpoint exactly what worked?
No, I can’t.
Can I give anyone else a precise prescription for how to manage their AS that will produce the same result? No.
Am I completely in remission, or ‘cured’, or free of AS symptoms? No, I can’t say that either.
What I can say is that bit by bit, the little positive steps I’ve taken over time have added up to a very different, much better life than the one I imagined when I was diagnosed.
For me, taking small steps to improve my general health over time has made a big impact on my experience of AS. And while the things that worked for me may not work for everyone, it seems like the best strategy to keep trying while I’m waiting for a cure.
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