(Note from Labyrinth Press: We’re pleased to announce our new Guest Author, Von Danse, who will be sharing her health journey along the road of the diagnosis, CIRS. Having suffered for 20 years with CFS and MCS, Von’s recent diagnosis and treatment has helped her find health practices, medicines and life hacks for living with chronic illness. Thank you, Von, for sharing your story. Posts will be published each coming Wednesday (except for today’s). If readers could please share Von’s posts as well as her GoFundMe (see below) that will be most helpful. May I say thank you in advance, friends and readers 🙂 )
This blog about my health journey of over 20 years through chronic health challenges.
For anyone just embarking on this crazy illness rollercoaster, I would like to say that improvement (even if partial) and the ability to lead a meaningful life is possible. There is much that can be done to aid this process and to also make crashes and setbacks more bearable. It is an ever-present challenge, waxing and waning. I personally believe it is a matter of management, maintenance and ongoing detox, rather than cure.
Though mainstream medicine is finally accepting the seriousness of these conditions, there is still a lot of misinformation out there. Many sufferers find patient based advocacy groups, online forums and personal blogs such as this are often vital in sorting out the tangled path of diagnosis and recovery. Over the years, complete strangers online have become supportive friends and a great source of information. So this is my way of paying it forward.
My health journey started subtly: A milder version of fibromyalgia started as a kid, then as a teenager it blew out into fully fledged severe illness when I caught glandular fever (Eppstein Barr Virus). It was several more years before it was identified as CFS (Chronic Fatigue Syndrome) and fibromyalgia.
I thought, in my naivete, that this meant finally a treatment and return to a normal life would then happen. However, in the 90s, mainstream medicine considered them psychosomatic rather than the serious physical conditions they are. It was just the beginning of a journey that has cost tens of thousands, and an endless stream of practitioners.
I have also launched a separate instagram account dedicated to my health journey @thetangledpath
Your thoughts?