A paradox is a bountiful thing. Curious and indefinable, it insists we take pause and reflect, wisdom ready for the patient. So much of what we yearn for is embedded in paradox – the things we cannot easily make sense of – as is so much of our suffering. Pain is one such oxymoron.
Rife and ubiquitous, pain is also by nature invisible. Barring some infections or a ghastly-looking injury, it lurks largely undetected to the naked eye and that matters. In certain contexts – avoiding discrimination or remaining employed – the fact that you can’t see it offers much-needed benefits. Maintaining our place in an able-bodied world means keeping these things tucked away. No one wants the infirmary.
But there’s a backside. As anyone whose suffering is invisible will tell you, it’s much harder to have your health complaints taken seriously or to get the help you need. Without a relatable diagnosis like cancer, it’s hard to find anyone who understands unless they’re in the same boat. This is particularly true for those of us who cope well. We present as strong and talk tough.
In this sense, our greatest strength really can be our greatest weakness.
I have been researching Lyme Disease and have been shocked by some of the parallels it shares with CRPS. Yes, Lyme can cause significant neurological dysfunction like Parkinson’s and Bells Palsy, so CRPS falls in line. But they are both largely complex and can manifest in countless ways; both are widely misunderstood, badly in need of public awareness and education. Lyme can lead to multiple infections, viruses and parasites, all of which can invade any system in the body.
I have known for years I had an infection in my nervous system, but couldn’t find anyone who had the time or inclination to take me seriously. I had a long list of ailments that weren’t easily explained and little money to draw on. Extreme and unrelenting muscle tension, stifling heat at the back of my neck, popping sensations – whatever the complaint it fell on deaf ears. At one point I ended up in the hospital with arm pain so severe they put me on morphine. It had zero effect and in the end, they sent me home with an ice pack.
Conventional western medicine is seriously lacking in its understanding and treatment of chronic pain. Yes, there are some drugs that have proved life-saving for some, but most if not all come with significant risk or side effects that can create other health problems in the long run. For CRPS in particular one treatment is considered highly controversial. In the UK, seven-day ketamine comas are being induced in a dramatic attempt to re-set the nervous system of anguished patients. The basic concept behind re-setting the nervous system – similar to rebooting your computer – made complete sense to me and I was interested – until I dug a little deeper.
Though I have suffered in pain for over ten years I have kept it largely to myself until recently. Two years ago I stubbed my toe and the classic symptoms of CRPS became more evident, challenging my ability to walk. Since then they have steadily worsened and today, I have widespread, searing pain. A wildfire has taken over my body. Rampant and deeply mercurial, this is a full-blown seizure. Spasms, electric shocks, frying skin, a racing heart, cold limbs that don’t tolerate heat…..it’s a chaos I could never have imagined, constant and unrelenting. On the Horowitz Lyme – Multi-Systematic Infectious Disease Syndrome Questionnaire, where 46 is considered high, I currently score at 130.
Not too long ago I watched a compelling documentary on Lyme Disease called Under Our Skin. A must-see for anyone who suspects they have Lyme (and tested negative) it takes an in-depth look at the neurological impact, difficulties with treatment, patent controversies limiting research, the problems associated with testing and the vast misinformation being peddled on this troubling disease. One woman describes the experience of Lyme as “being trapped inside her body” – one I whole-heartedly share.
My efforts to find treatment have been extensive. The neuroplastic approaches on this site have benefits that can be life saving and far reaching, but they can only do so much in the face of an active and rapidly spreading infection. I met one woman who has treated her CRPS effectively with long term antibiotics but when I tried them, it made the CRPS in my foot worse. Anything that creates stress to my digestive system has been a nightmare. I can’t seem to tolerate medication of any kind, and by that I mean it causes more problems than it solves. Natural, herbal antimicrobials create an unbearable die-off, even at minute doses.
When insomnia hits, which is daily now, there is far too much time to think. Suspended, unable to walk or lie down, I spend long hours sitting on my couch in the middle of the night, waiting for the frying to ease, my head so heavy with exhaustion it wobbles like an infant’s. Certain truths are inescapable in the darkness. All my life I have felt like a foreigner. Despite many years of trying, I have no sense of belonging to family, my country or this city. I try to imagine what being at home feels like in the spiritual sense, my body a tortured animal. In my heart of hearts I believe that “home” can be found somewhere in the soul, and I’ve certainly had moments of finding it – in the face of death, or consumed with intense emotion like grief or joy. Beyond that I remain estranged, dreaming of a life with meaning and purpose and acceptance. Hopefully this site has made some kind of difference. It’s the only legacy I’ve got.
My Story – A Glimpse
by Jessica Mendes