In My Chronic Illness, I Found a Deeper Meaning – The New York Times – Jan 18 – by Elliot Kukla
I’m not usually a fan of “I accepted my pain, so it got better” stories because they so often reach an overly optimistic and, to me, unrealistic, outcome. But this essay paints a far more realistic picture of what acceptance might look like and how it could be nurtured.
…I had discovered that I was no longer trusted by my doctors about my own body or experiences.
I reported odd, terrifying and sudden physical changes; they recommended cognitive behavioral therapy and Weight Watchers. I felt exiled from the world of the well, isolated by thick walls of suspicion. Continue reading
Pain management, prescription opioid mortality, and the CDC: is the devil in the data? – J Pain Res. Oct 2017; 10: 2489–2495.
Transparency, freedom from bias, and accountability are, in principle, hallmarks of taxpayer-funded institutions. Unfortunately, it seems that at least one institution, the Centers for Disease Control and Prevention (CDC), continues to struggle with all three.
What began with a prescribing guideline created in secrecy has now evolved to the use of statistical data and public statements that fail to capture not only the complexity of the problem but also the distinction between licit and illicit opioids and their relationship to the alarming increase in unintentional overdose. Continue reading
Pain – Thomas Dikel – Medium
Pain is largely a misunderstood construct.
This is odd, as everyone has experience with pain, and it has been studied extensively. Nevertheless, it remains a mystery, even to those who believe they know it best.
What we understand as pain is not a unilateral function. There are in fact two basic and primary components to pain. Continue reading
Learning From Pain – Quinn Norton – Medium – Quinn Norton – Sept 2017 – On living a continuously interrupted life
This is a wonderfully accurate description of what it’s like to live with chronic pain:
I made a lot of big plans. Plans are hope. They necessitate a future that is not only different from, but also better than, the present.
But plans are fragile, little crystalline thoughts that must be carried from place to place cupped in a steady hand that is always slightly too small to carry them, breathing even, or even held, until they can be put somewhere safe.
The first and most persistent thing pain will teach you is patience, and that’s the hardest thing to learn when time feels limited. Continue reading
The Differences Between Words That Describe Being Sick | The Mighty | March 2017 | by Ashley Seymour
When talking with someone coping with chronic illness, you might find yourself trying to relate to their experiences. You’re probably coming from a kind and caring place and looking to sympathize, but you may not realize that when you say things like “Oh I know just how you feel! I was so exhausted after work the other day!” or “I was so sick with the flu last week. It’s taken me forever to recover!” you make it obvious that you are far from truly understanding.
It’s not really your fault, though. Continue reading
CRPS, Chronic Pain and America’s war on painkillers – BLB Soliciters – April 2017 | Written by Libby Parfitt
Headlines scream and terrify: “How the opioid epidemic became America’s worst drug crisis ever”, “America’s indiscriminate killer”, “Inside a Killer Drug Epidemic”.
The papers are full of hollow-eyed people telling their sad stories, starting with a doctor’s appointment for a bad back, ending with scoring heroin on a street corner.
If you heed only these headlines, you’d probably expect me to be a shambling, semi-conscious being, barely capable of functioning as an adult and concerned only with where my next tablet is coming from. Continue reading
The Reality of Living With Fluctuating Fibromyalgia Symptoms | The Mighty – April 2017 Mattea Sykes
This article was mistitled because it is actually about EDS.
Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.
But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.
Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.
Mattea goes on to deliver a blow-by-blow narrative of a couple of days with EDS: The Reality of Living With Fluctuating Fibromyalgia [EDS] Symptoms
Living with chronic pain – Laura Peters – April 20, 2017
I’m sure many folks with EDS can relate to Sydney’s struggle with her typical pain from EDS.
There are days that Sydney Davis can’t move from her bed, because her entire body hurts. “It’s exhausting to take a shower,” she said.
Davis likes to stay active. She climbs mountains, she plays sports and she wants to be a physical therapist.
Many folks with EDS seem to live with this contradiction: being active and being in pain. Many of us have increasing pain as we age precisely because we were too active for too long while we were still able. Continue reading
My Body’s Bad Glue | ENTROPY – – December 26, 2016
This is a wonderful essay linking the physical “disconnectedness” of EDS to a psychic feeling of disconnection from the self.
I have Ehlers-Danlos Syndrome, which means my body has bad glue.
My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real. My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading
My Body’s Bad Glue – ENTROPY
written by Carolyn Zaikowski – December 26, 2016
In this essay, Ms. Zaikowski describes how the “bad glue” of EDS allows us to slip and slide not just in our bodies but through our lives. She connects this physical malady to our emotional and even the existential realms – a very different viewpoint.
I have Ehlers-Danlos Syndrome, which means my body has bad glue.
My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real.
My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading