Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Jayne Barnard Show Notes
Sick baby
0:05:40
Jayne's father was in the military, air force, so although born in Cold Lake, Alberta (Canada) and was an ill baby, spent a lot of first year in the hospital - her family was terrified she'd be dead before her first birthday - started as a kidney infection, very high fever
0:06:45
They moved 12 times in 14 years, in 5 provinces, 2 US states, and Germany on a NATO base - Jayne forced herself to overcome her shyness to make friends each time they moved - she learned she had to make her social life, nobody else could do it for her
0:07:45
Jayne went to college for social work, got married, got divorced, back to University for psychology and theatre, almost finished her degree and got a diagnosis of ME (myalgic encephalomyelitis) in 1992 - onset seemed sudden at the time, but in retrospect the signs were there
0:08:30
Jayne was under a lot of stress being a single Mom with a controlling ex-spouse - there were not a lot of supports for chronically ill people - she was commuting about 70km / 50 miles, both ways and unbeknownst to Jayne, her car was spraying antifreeze and she was inhaling it - she got an opportunistic infection
0:10:20
Jayne had such severe cognitive impairment from being sick that she had a car accident - she went to her doctor and said something is seriously wrong - Jayne always had an abnormal response to exercise, but she was fit and a runner and hiker, biked, swam - but always 48 hours later severe muscle pain
0:11:30
Jayne learned about post exertional exacerbation of symptoms, now recognized as hallmark symptom of ME, was always an experience of Jayne in response to exercise - but when she got sick she could barely walk 2 blocks
0:12:30
Her GP wanted to send her to a psychiatrist - but Jayne kept insisting it was physical and he sent her to the town's only internal medicine doctor and he was dedicated to finding out what was wrong - Jayne got a diagnosis of 'chronic fatigue syndrome' from a specialist
0:14:50
But the specialist said there was nothing they could do for her - that was crushing for Jayne, she was at the start of her career, in peak physical shape, and this diagnosis hit like a ton of bricks - if she didn't have 2 small children she probably would have committed suicide
0:15:30
The internal medicine doc prescribed steroids, and they kept Jayne on her feet for 2 years - and this is the 1st of 2 medical errors impacting Jayne's life: he also prescribed aldosterone / spironolactone - it acted as a diuretic and it pushed Jayne into chronic dehydration causing long term tissue damage and was not corrected until 2014
Crippled and home bound
0:18:00
So it was 20 years of chronic cellular dehydration and none of the many specialists she saw ever looked into it - one of the global problems with an ME diagnosis is that patients are so scared of being accused of psychosomatism they don't seek mental health support - Jayne was in great need of grief counselling - she's been carrying this grief for 25 years
0:19:30
Grief for loss of career, most of her friendships, ability to raise her children as she wanted to, loss joy of further education - she lost her entire life in about 4 months and had to keep it together for her children - Jayne thinks everyone who gets a serious diagnosis should be offered counselling support
0:21:20
Fast forward 8 years (in 2000) Jayme met her 2nd husband and moved to Calgary (where she still lives) - the drier weather and higher altitude put more stress on her dehydrated body - her house was at same elevation as Banff ski resort, so in the highest elevated city in Canada - from the day she arrived in Calgary her health deteriorated
0:23:05
Until 5 years later she was completely crippled and home bound with teenagers - Jayne was too sick to have care: sound hurt, light hurt, weight of clothing hurt, very often too sick to eat - the smell of cooking food would make her to ill to eat for 12 to 24 hours
0:25:30
But caregivers need instructions and that takes energy - writing a 2 sentence instruction for a caregiver was beyond Jayne's ability for 5 years - she could not finish a sentence verbally or in writing - Jayne attributes it to lack of blood flow and oxygen to her brain - Jayne is currently receiving oxygen from a tank to her nostrils
0:27:00
Jayne started drinking rehydration fluids instead of just water, and started to receive supplemental oxygen, her brain started to wake up, but it took about 2 years - yet none of the many doctors even mentioned dehydration
0:28:50
Jayne still doesn't know if she has mild or medium or severe ME because so many things have gone wrong - her liver and blood vessels are impaired, and genetically she can't expel toxins very well - her body is a toxic waster dump, stored in fat, and when Jayne burns fat she feels like she's being poisoned
0:31:00
Jayne is active with the online community to give back to the people who kept her alive - she sees a lot of people globally with similar symptoms - Jayne suspects that ME is a unique disease for everyone depending on their genetics and environmental exposures
0:32:30
Now in ME community, there is greater recognition of benefits of IV saline - in 2012 when Jayne started more research - Jayne had to urinate frequently, impeding her ability to rest and sleep - in watching a video of research Dr de Meirleir that he treats all his ME patients with diabetes insipidus protocol and an antidiuretic
Geographical cure
0:33:50
Jayne had to convince her GP to prescribe her an antidiuretic, Jayne had to jump through medical hoops for 6 months to get a paediatric dose to allow her to sleep for 8 hours - this was a huge step in addressing her chronic dehydration - the downside is it washes out sodium creating electrolyte imbalance - Jayne does not understand why she was not told that up front
0:35:30
Jayne tried the 'geographical cure': if she lives somewhere else, it will be different - so she moved to sea level on the west coast of Canada for a winter - but Jayne didn't realize the move would change how much diuretic medication she needed - her sodium levels dropped and she was nearly comatose
0:37:30
Because hyponatremia (low sodium) symptoms are almost identical to post exertional malaise - nausea, aching, brain fog, etc - nobody around her realized it was not another ME crash - but her new landlord saw her and said he had to take her to emergency and they gave her high sodium IV for next 48 hours
0:38:10
But Jayne had neurological damage for next 2 years - auditory hallucinations, visual distortions, and severe memory impairment - took a year to regain cognitive function
0:40:00
A lot of her memories are still gone, a blessing and a curse - for so many years she was filled with grief and rage, and a lot of those memories of pain, anguish, despair have faded and that is a relief
0:42:20
As she recovered, her muscles and joints moved in new ways - her brain was able to think through the stages of a problem again, a huge benefit as she know had the benefit of a thinking brain - rehydration and freedom to mover her body without pain was huge for Jayne
0:43:45
She was able to attend and dance for 3 minutes at a family wedding, when people weren't expecting her to even stand - in her research, she found that ME doctor David Bell experimented with giving his patients a litre of saline a day and it cleared their cognitive fog and orthostatic intolerance and improved their quality of life
0:45:00
Jayne tried to get her doctor to prescribe IV saline but was declined - doctors only consider it for emergency situations and they don't realize people with ME are in emergency situations every day - but Jayne found a functional medicine doctor that would prescribe IV saline every 3 weeks in dry climate, and 4 weeks in wet climate to keep her sodium and fluids up
0:46:15
This allowed Jayne to double the number of steps she can take before collapsing from POTS - process food better, less nausea, think more clearly - but the best thing is that from 2014 she's been able to write again - a passion she thought forever lost - it was a huge boost psychologically
0:47:00
Jayne still has ups and down physically - a cold will put her in bed for a month - some days have to keep light low - can't drive in traffic due to constant influx of stimuli - live a quiet and isolated life, but well within confines of her home
When The Flood Falls
0:48:00
Jayne's family struggled with her health when she got sick - a lot of responsibility fell on her oldest daughter, age 14 - she had therapy in her early 20s to deal being forced to grow up quickly and fear of only reliable parent was going to die
0:49:15
Jayne's younger son was buffered by his older sister's support, but resentful that Jayne couldn't be there for him as a teenager - and he hasn't completely accepted that Jayne is physically ill - so he carries a lot of anger
0:50:20
Jayne and her second husband thought Jayne would be more functional if she didn't have to work outside the home - but she got worse and he had to make a big adjustment and learn caregiving skills - but when her daughter graduated from university she moved back home so Jayne's husband could fulfill his life long dream to sail across the Atlantic on a tall ship - he trained for a year, was gone 7 months
0:51:30
Jayne didn't want her poor health to further limit her family, so they would hike on the weekend and take pics to show her - having a child psychology degree, access to internet, ability to analyze research and supplements were a big advantage - even so, the lack of medical support nearly killed her multiple times
0:52:30
Jayne's book, When The Flood Falls, was started in 2004 but had to stop 3 years later when too sick - she created a secondary character "Jan" who has ME - ostensibly the book is crime novel / suspense, but Jayne was also showing the stigma attached to ME
0:55:00
"Jan" is sensitive to light, sound, house bound, vulnerable to treatment fads, like stimulants - Jayne was able to accurately describe the stimulant's effect on a body that has little energy
0:56:30
In 1998, from what Jayne could glean from the internet, she hypothesized that ME was a mitochondrial impairment - now 20 years later scientists are finally doing those tests and have found energy impairment - ME patients are in a constant state of brown outs - so not surprising the array of ME symptoms
0:58:30
Sometimes it is easier to process grief by putting onto a fictional character - Jayne did a lot of grieving writing the character of "Jan" - watching every one else live their lives - it was a way to detach from the grief and make it bearable
1:00:00
Early feedback on "Jan" was she was too depressing for a commercial audience - feedback from ME community is that Jayne stayed true to the ME experience while still making it palatable to the general public - Jayne's book and character also serve as outreach / awareness of ME to suspense readers
Where The Ice Falls
1:03:00
A typical day for Jayne is about 45 minutes of each hour laying on her chaise in a dimly lit room - this gives Jayne about 15 minutes of energy to be slowly mobile to make tea, putter around - Jayne saw a new internal medicine doctor recently and told him about her level of functioning - the doc said 'that must be terrible' and Jayne said that's the best she's functioned in 15 years
1:05:30
Jayne can't sit up to write unless she had a neck and shoulder and wrist braces - so she writes on her laptop on a wheeled hospital tray - she uses a light weight and ergonomic mouse and keyboard - always has pillows to support her head - for her last 2 books her voice has gotten strong enough that she can dictate to her phone, and it sends it as text to her laptop - she then edits later when she has energy
1:07:45
It takes Jayne a long time to write because she has to rest so much in between - but if she could not write, it would be harder for her to retain hope and optimism - Jaynes' writing process is unique and counter intuitive - she was in speech therapy as a child because she didn't talk - it took her a while to trust that verbalizing her writing would work - now she's written 2.5 novels that way
1:09:30
Jayne has just submitted the 3rd manuscript for the Falls series - her first book When The Flood Falls won the Unhanged Arthur, Canada's top prize for an unpublished mystery manuscript in 2016 - Dundurn Press offered Jayne a 3 book contract, a trilogy
1:11:30
Jayne is pleased her 3rd book, Why The Rock Falls, leaves the characters in a good place - and that readers will identify with "Jan's" improved health with their own lives - while ME is forever, it doesn't mean we have to stop living
1:13:30
At every stage of Jayne's recovery, there was a fear it would be temporary and that if one thing went wrong, the house of cards would collapse again - in 2013 her goal was to walk 50 steps and it took 3.5 months and she had to rest every 20 steps - taking a step off the sidewalk was risky - it is an act of faith that one extra step is not going to destroy her
1:16:00
Jayne's family has had to adjust to her improved health - for many years she was not strong enough to raise her voice to express her wishes - so her gains in autonomy were a big shot to them
Health gains
1:17:30
Jayne helps promote her books by doing stuff online since she's not healthy enough to do in person book signings - her 2nd book "Where The Ice Falls" is a Christmas mystery and also deals with assisted dying - something ME patients often consider and would do if they had the energy - Jayne lived a good part of her life suicidal - but under Canadian law she would not be eligible for assisted death
1:18:30
Many people with ME would like that option because daily life with ME is unbearable - Jayne's initial reaction to finishing her trilogy was "I'm done, I don't need to push myself any more, I could die tomorrow and I'd be okay" - she's not used to not having every day be struggle - what has kept her going for 5 years was getting these book done
1:20:30
Jayne thinks she may her 15 minutes of energy each hour and write a radio play with some of her writer friends - she cannot not write, but it doesn't have to be for publication - and she wants it to be fun - 2 years ago Jayne started on low dose naltrexone helped calm her brain down - 8 months ago she started on low dose of mestinon based on research by Dr David Systrom at Brigham Women's Hospital
1:22:30
He found that low dose mestinon helped get more nutrients into cells and alleviates some of the aerobic deficit - not everyone is a responder - the 2nd day she was on it, a long time friend said she looked taller - it was the first time in 27 years her neck muscles were strong enough to hold up her head without pain and collapse
1:24:00
About cranio cervical instability, Jayne is not sure if its the 'chicken or the egg' - if poor muscle tone contributed to CCI, or if they were born that way - an exciting area of research, but also risky surgery - anaesthesia for ME patients or any one with a mitochondrial disorder needs to print out an emergency alert card so paramedics don't give you something that makes you a lot worse
1:25:30
A friend of Jayne's son was brain damaged from an appendix operation because of his unknown mitochondrial disorder and the anaesthetic - so patients need to make their surgeons aware so they are safe
1:26:40
Jayne hopes that people living with ME can find something joyful, even if its only 5 minutes a day - so they get a sense of peace and progress and hope
Connect with Jayne Barnard:
Twitter: https://twitter.com/J_E_Barnard
Facebook: @FallsMystery https://www.facebook.com/FallsMystery/
Instagram: saffron.hemlock https://www.instagram.com/saffron.hemlock/