Phases of ACCEPTANCE

God grant me the SERENITY to accept the things I cannot change, 
the COURAGE to change the things I can, 
and the WISDOM to know the difference.  
(-from the Serenity Prayer)

In the past three years, in addition to everything else, I have learned a ton about coming to acceptance, and more recently, learning about new research breakthroughs and discovering new and effective strategies every day, all on how to understand and improve my situation.  Don't worry. There is still hope on the horizon. This is just a very long learning process.  

I ALWAYS wear dark glasses in public due
my sensory hypersensitivity caused by hyper-
vigilance of the central nervous system.
The fluorescent lights hurt my eyes and brain.

My first lesson of this disease was PATIENCE...  With how astronomically slow the medical system works and how slowly and slothly I have to live my life now. How long it takes to accomplish things that used to be so quick and easy. How slowly my brain works. How very VERY few things I can accomplish in a day.  How long it takes to process all the intense emotions that come with an experience so earth-shattering and life-changing, leaving me bereft of any sense of control over my life or myself. That took about a year to wrap my brain around.  

I immediately turned to calling forth the "lessons of the sloth", which became my new power animal.  I have stuffed sloths and sloth reminders hanging from my hammock chair, lamp, necklace, rear-view mirror, etc.  Even a sloth neck pillow hoodie you can see in the pic below that I use to support my neck and block out the light and the eye contact; that comfy tool quickly became one of my favorite things. I had to really convince myself to accept that this slower pace of life was actually calming and good for me.  The abandonment of a life full of stress, chaos, a million responsibilities, and a pace I could never keep up with, was now acceptable and appropriate for me...  The rat race was gone, leaving me to focus on the smaller things like the beauty of a single flower or the feel of the sun on my skin.  The sensation of a good morning stretch and the meditative tranquility of acts like coloring, reading, journaling, cuddling with my animals... I started to see the serenity in it.  

I took a picture of myself on one of my worst days
only to find the word COURAGE written across my face.

The next phase was really focused on coming to ACCEPTANCE with everything this illness has caused and changed and destroyed in my life:  my career, freedom, body, mind, relationships, wardrobe, finances, hygiene, pride, car, activities, hobbies, phone, ability to leave the house, daily routines, trust in doctors, and even my own identity...  The list goes on. There has not been a single aspect of my life that is not affected or damaged by my M.E. Including harassment and derision from strangers, friends, family, and even from doctors who are supposed to help.  So much anger, frustration, loneliness, and depression built up. My mantra for two years was "LET GO" (of things you cannot control).  I had the Serenity Prayer written on my bathroom mirror for months. That one took a while for me to come to terms with, but I finally did.

I have just recently passed that phase and come to the new chapter of focusing on proper PACING, which is absolutely essential for people with myalgic encephalomyelitis (ME) in order to prevent my own death and actively improve my functionality.  After learning from the M.E. doctors and research experts that if I want to keep myself safe from falling into that downward out-of-control spiral that can lead to profoundly severe M.E., bed-bound state, bedpans, completely dark and silent room, almost zero contact even with loved ones, paralysis, tube feeding, and possibly death… I need to keep my level of exertion to 80% of what it takes to cause a crash.

The definition of POTS is when your heart rate
increases at least 30 bpm when standing.
This is me sitting on a stool doing dishes.

Using the heart rate monitor to keep myself below my broken aerobic zone, as the study-based research shows from the M.E. experts...  I am learning SO much from this protocol about which things make me better and which things make me worse. The immediate, constant, and real-time feedback of the heart monitor, including the alarm that goes off when my heart-rate goes over 100, is invaluable.

This is my resting heart rate while fully
reclined. This is where it SHOULD be.

But even more important than giving me information on my condition and protocols to help, the heart monitor has given me a sense of VALIDATION.  Before, all I had to go on were my body's signals, sensations, and feelings, which everyone can (and does) argue with, doctors and loved ones thinking I'm exaggerating, making things up, or lazy.... to the point where I start to believe them and doubt what I'm actually going through.  This can be annihilating to our mental states and sense of self.  But NOBODY can argue with a heart monitor.  Even myself!!  Watching the numbers go up and down with the severity of my symptoms gives me a sense of relief and validation that nothing else has since I was hit with this dreadful disease.  My body's signals, my instinct and common sense, my feelings and thoughts were right all along.  Screw what anyone else thinks - I have data on my side.

In addition to learning how to pace my physical stamina and fatigue, I have also learned about pacing mental stamina and fatigue, which is just as debilitating and can cause cascading physical and mental symptoms, including progression of the disease.  This book, Brain Injury Survival Kit, has been monumentally helpful in coming to terms with my new level of cognitive dysfunction and struggles with what we call "brain fog".  The way words just elude me at times, or I can't remember the simplest of steps in a process (focusing on step two so hard makes me forget steps 1 & 3, much less remembering what I'm doing or why I'm doing it). Or sometimes my brain is just "off" and I cannot turn it back on no matter how hard I try.  No amount of effort can "push through" mental dysfunction -- it's simply not possible.

Should be called, "ME Survival Kit"!

It was by chance that I came across this book, and serendipitously, the book addressed my goals in the same order as I have, page by page, actually.  Chapters about coming to terms, letting go of the old self in order to accept the new (hence my last blog post), followed by importance of pacing, strategies to prevent and manage mental exhaustion, and how to gain focused attention with a head full of mud (which will be my next goal).  I post sticky notes full of quotes from this book on my white boards around my cocoon bed until I feel I've assimilated them into my new world view.  (I swear I am not affiliated in any way with this book, publisher, author OR with Polar sports watches. 😅😜  I'm just finding these tools to be VERY helpful!)

But all of that information combined with my cascading crashes and flare-ups brought me a conclusion that has been a HUGE obstacle that I have been in denial about for a very long time...  That if I want to see any semblance of balance or improvement, I need to restrict my level of activity SIGNIFICANTLY more than I already had, which was utterly devastating.  

My psychiatrist helped me to create the 
chart at the bottom of this board to help 
navigate my PRIORITIES.

It puts me into the 25% most severe ME patients who are housebound. I am now almost bedridden in order to keep my heart from working too hard.  Since my heart monitor goes off every time I stand up due to the ME-induced central andrenergic postural orthostatic tachycardia syndrome (POTS), I need to stay in bed and reclined as much as possible, only getting up for absolute essentials such as going to the bathroom or retrieving food from the kitchen. Conversations, which severely deplete mental stamina and lead to crashes, need to be limited to relevant information only and kept under two minutes in length, maybe ten at the most if it's really important.  

This process has forced me to completely reassess and reorganize my PRIORITIES in a major way.  I now only have energy for the top very most important things, leaving everything else by the wayside.  I literally cannot do it all.  I have to choose. If I want any shot at all of avoiding crashes and finding enough balance to accomplish those three most important and most urgent things well instead of poorly or not at all, I have to cut out everything else.  Including the people I care about most, shutting out the people I love and unable to help my closest friends in their time of need. 

Essentially I have to reduce my world to just this one recovery room, cutting off almost all contact with the outside world. "The World of One Room", as Jessica Bearman (Author of A Girl Behind Dark Glasses) calls it. 

I sometimes have to lock my door and turn off
 my phone for hours or days at a time just to
reduce incoming stimuli and find some peace.

[SIDE NOTE: Jessica's book helped me immensely in coming to acceptance.  Reading experiences that so closely resembled my own, seeing/feeling/hearing the details of how bad things can really get if I don't listen, and Jessica's positive attitude, personality, and spirit shining through it all, it astounded and changed me.  If she can find such victory and gratitude in finally being able to move her arm enough to touch her own face and brush her own teeth, if she can create beautiful and meaningful works of art while completely paralyzed, I can certainly have a good attitude and allow myself to celebrate the tiniest of victories... though they are actually the big ones.]  
(Again, no affiliation here other than being a fan. 😉)

This new level of restriction and boundaries takes my isolation and limitations to a whole new level, and it took me a week or two and a few sob sessions to come to terms with that as well. But when I finally did, it actually allowed me a new level of freedom to create and hold my new boundaries... It gave me permission to listen to my body without guilt.   It gave me license to actually consider using a reclining automatic wheelchair that could extend my functionality significantly and give me back some of my independence, and with good reason. 

I often have to wear a neck brace due to the
permanent damage to my neck and spine.

As I focus on this latest goal, I am learning in leaps and bounds. For the first time since my former life was destroyed, I feel like I am actually making progress in gaining control of my ability to find stability and prevent crashes.

Each lesson has been very difficult but also very worth it, gaining invaluable wisdom along the way.  I believe that everything happens for a reason, and that the Universe doesn't give me things I can't handle, however torturous they may be in the moment, or seemingly endless moments. This is just part of my journey.

But accurate awareness has so much to do with access to proper care, prevention of stigma and harassment, and the mental stability of patients with this disease because we are so often brushed off as lazy or attention seekers.  
Experts are just now finding proof through current research on how to definitively identify this disease through astounding biomarkers and how incredibly devastating, destructive, and dibilitating it is to the patient's body, mind, and health. This means huge leaps and bounds for us in actually getting validation, proper testing, proper treatment, and real help for people with M.E.

So the biggest thing people can do to help if they cannot do anything else is to share some of my posts here or on my Facebook profile that they might find particularly poignant or informative.  Even if you have heard the message before, others need to know that "chronic fatigue syndrome" is actually myalgic encephalomyelitis (or some other missed diagnosis) and is a VERY dangerous disease, not just a "yuppy flu" for the lazy who do not take care of their health. 
So many people have that stigma about this disease, even doctors. Most people actually know absolutely nothing about it...  Much less that it's one of the most devastating diseases in the world.  According to experts, worse than end-stage cancer, worse than end-stage AIDS, worse than congenital heart disease, worse than MS, and twice as prevalent....  and it goes on for decade after decade if it doesn't kill you first.

I almost always wear a breathing mask during any visits 
to hospitals or medical centers due to my compromised 
immune system. The ear defenders are ESSENTIAL for public 
due to my CNS hypersensitivity. Noise hurts my ears and brain.

I was one of the most health-minded people out there for many years WHILE CHRONICALLY ILL (as documented in this very blog) before I got taken down by M.E. And now doctors just tell me derisively to go home and take better care of my health, all of them shoving me out of their offices in tears.

However, I am actually starting to have a lot of hope and validation with FINALLY getting a referral to Stanford after THREE YEARS of begging.  People there actually believe me because they know what M.E. and dysautonomia look like. People there are finally starting to give me the proper tests. People there treat me like a valid human being.

So yes, it has been a very tough road that I have had to walk, but I am not hopeless. I actually have quite a bit of light on the horizon compared to a couple years ago. I am still fighting like always, but now I'm fighting to stay alive every day, moment by moment...  And I just might win.

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P.S. - I just noticed the shirt I'm wearing in that last pic was created by Jamison Hill, a friend and fellow M.E. warrior who writes a similar blog at JamisonWrites.com. (He has actually been published in Men's Health!)  If you'd like to spread awareness by rocking an M.E. shirt, proceeds of which help fund Jamison's medical care, then click here!

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Tribute

When I think of all of the things I have done in my life… when I really stop to think about specific memories of all the different types of experiences I’ve had over the many years -- ASIDE from all of the health horror stories and relationships gone bad -- all I can think is THANK GOD.  Thank God that something in my soul had the wildness of spirit and lust for adventure that made me determined to live life to the fullest in every way that I could from such a young age. My motto was that I wanted to experience everything life had to offer. And so I did… every opportunity I got.

I have climbed the muddy hills of The Badlands at sunset, racing the night and the storm.

I breathed underwater while swimming the depths of the Gulf, glimpsing the ever-elusive and gigantic Pacific manta ray gliding overhead, and then almost got swept away by the surge.

I have skied the slopes of Switzerland and watched the sun rise over the Alps, slowly disappearing the morning star each day as our train wound its way down the mountains to our little Swiss school where we would eat our lunch of fresh French bread, cheese, and fruit while we watched the swans glide across the glistening lake.

I have followed the path of a guru, studying the words of the ancients and learning the poses that bring peace.

I have mesmerized an entire classroom full of hurt and broken and angry at-risk high school students all at once with laughter, with tears, with inspiration, with determination.

I have seen the exquisite and majestic beauty that can come from just a single spot on a single bloom… have been caught off-guard by a divine fragrance on countless occasions, always stopping to wonder which flower or bush it came from before closing my eyes and breathing deeply while I chuckle and appreciate the way nature can just reach out and grab my attention out of nowhere.

I have known great love.  And I have known great loss.  And known great love again. And I can remember the many moments in the very beginning that made me so quietly certain, so very certain, that this was the person I was going to spend the rest of my life with.

I have climbed countless mountains, hiked countless trails, camped in the wilderness with nothing but a gallon of water, with a loaf of bread, with a can of chili, a flint, a blanket, and two best buds, huddling together in the night for warmth.

I have scored points as a roller derby jammer, leaving a trail of fallen players behind me.

I have felt the unbridled power that can be called forth by chanting and holding beads with a hundred other believers.  

Have felt the magic of harmonizing so purely and sweetly into microphones or cathedrals with thirteen other solo singers.

I’ve sat in the shady dens of the drug users, succumbing to the seductive sensations in my body and pretending that the outside world does not exist.

I have breathed in the fresh morning air of the Joshua Tree deserts, felt the scorching sun on my skin later that day, seen the oasis from far away.

I've tamed a wild colt with my stillness, moment by moment, breath by breath, over the course of one amazing summer.

I have trained for triathlons and half-marathons (even if I never made it to the big races).  I’ve lifted dead-weights and seen just how far and how fast my body will take me.

I have walked into a bar full of men on more that one occasion and “owned” it, knowing that each of them is tracking my every move.  I know what it’s like to scan the room and simply decide who I’m going to go home with.  I’ve felt the hot gaze of the man walking behind me, unable to take his eyes off my ass as I strut down the hall.

And I’ve had some amazing sex… on many many occasions.  And I mean REALLY. Amazing. Sex.

I’ve surfed the waves that crash on the coasts of Mexico, I've swam the moonlit shores of Hawaii, and I’ve slalomed the wakes on the lakes of Oregon.

As a young child, I have cooed a baby lamb to sleep in my lap, and as an old farmer, I have watched a newborn lamb take its first steps, all damp in blood and afterbirth.

I’ve floated boats through, ridden mules through, zipped lines through, and driven cars on “heinous” tiny roads through the mighty jungles of the Yucatan.  Watched the monkeys swing from tree to tree oh-so-early in the morning (stretch!), stood amid the pyramids and pieces of ancient civilizations long gone.

I’ve climbed every step of the Eiffel Tower.  And the Space Needle. And La Sagrada Familia.  And Tibidabo. And Chichen-Itza.

I’ve gambled in Vegas and won.  Have also gambled and lost.

I have rocked unsettled infants to sleep, feeling the soft tops of the precious heads resting so gently against my cheek. Have chased tag and hidden rocks with those same infants after they've grown a few years, stealing pieces of my heart as they go.

…and today all I can think is thank God.  Thank God something in me decided to really LIVE instead of letting life pass me by.  Or maybe I should thank myself instead. As I lie here in my prison bed, unable to move, taking inventory of all the individual aches and pains throughout my body, I frequently reassure myself that if I were to die today, I WILL have lived a full life.  And I am satisfied.

As the stabbing in my hip breaks my attention... I am thankful for all of the memories that have taken me away from it for this long.

Then I suddenly realize… that even if my body and mind are broken… that my spirit has not changed.  That I still have that fire inside of me, wanting to greedily eat up everything life has to offer. And I wait for the days that it can spark it’s flame.

What will YOU do with all of your tomorrows…. before they run out?

Disability Humility

I realize that I came up with my original informational cards when I was in a triggered state of emotional reactivity towards recent bouts of hounding, harassment, and discrimination that I had been victim of.....  The angry, judgemental, dangerous words of my haranguers would not stop rattling around in my head until I wrote down a rebuke.  My inability to provide cognitive reasoning at the time caused me to feel powerless and angry. I regained my power by writing in succinct business-card format what I would have liked to say to those people who harassed me so that next time it happened, I could "say my piece" by handing them an info-card and NOT feel even more powerless than I already do on a daily basis.

As I revise these cards, these tools of survival, I am trying to let go of the anger and instead focus on spreading awareness of invisible illness and service dogs in a way that is easier for people to hear.   Knowing that these nicely-worded cards are being created for people who are going to mistreat me in a way that causes more emotional and physical trauma to me than they will ever understand... It is a difficult thing to do.  I need help in dealing with my resentment over being disrespected or negatively reacted to simply because my daily struggles and coping tools are so severely misunderstood.   It is a bitter bone that I have been chewing on for quite some time, and its good n’ stuck in my craw in a way that's hard to get out.  

These are things I’ve known before in a logical way but I'm just now attempting to come to emotional acceptance with.  I'm just noticing how much more incredibly difficult my day-to-day life is simply based on the way people occasionally respond emotionally or defensively to those informational cards.   I am realizing that if I want strangers/public to respond in a manner that will allow my life to be easier, then I need to word myself in a way that cow-tows and bows to other people's discomforts with my disability... Even when they are breaking the law and putting my life at risk by rudely distracting my service dog.  Even when they are actively harassing me for being disabled.

This is very difficult as it requires me to let go of a certain amount of pride as well as personal boundaries that I’ve had to establish in the past regarding how I will and will not allow myself to be treated, boundaries created as I was crawling out of emotionally abusive relationships… boundaries that I had to work damn hard to build from scratch back when I was recovering from codependency and sense of worthlessness and self hatred stemming from childhood and teenage-hood and early twenties.   Boundaries that are very difficult to give up.

It's not about who's right or who's winning the fight... Sometimes you have to give up your pride and your need to be accurate or validated or on the right side of the law or medicine, because no matter what you do, you cannot control the external factors, which means that in order to survive and not only make your life easier but also reduce risk of your actions backfiring, it is imperative that you learn to let go of being right and instead “catch more flies with honey”… allow yourself to be humble… even if they don't deserve it… YOU DO. You deserve the peace and sanity that will come by sugar-coating the words in a way that will allow them to hear the message more clearly, which will result in a much stronger wave of awareness and  compassion toward your situation (and so many others) versus someone who gets pissed off at your card or triggering verbage.

I need to look at it not as giving up my boundaries but as responding and teaching in a more Zen-like fashion... I do not need an "eye for an eye"; that only creates more trauma and blindness, which I can't afford.  Instead, picture thyself channeling the detatched "turn-the-other-cheek" high-road of Gandhi, Mother Teresa, Jesus, Buddha...  Book 2 of my life is all about applying the wisdom I have gained in Book 1 of my life.  Time to step up your game, Ronni Capper!!

MY M.E. STORY

I just realized I never actually told my Myalgic Encephalomyelitis story here on this blog, and this document does a good job of it.  The following is what I put together over the course of two years as I was repeatedly shoved out of doctors' offices in tears: belittled, ignored, denied, avoided, mistreated, swept under the rug.  I realized quickly that trying to remember the symptoms and details of my mystery disease off the top of my head during the course of a fifteen-minute badgering by doctors was pointless and harmful, so I started writing it all down.  Every time a doctor silenced me instead of treating me, I changed and tweaked the wording, content, or structure of the document to encourage more acceptance and respect from medical professionals.  The final version of this was updated as I prepare for my upcoming consult at the Stanford M.E. clinic.  It includes all the info they request in order to help them make an appropriate diagnosis, prognosis, and treatment plan...

_____________________________________________

ALL I SEEK IS AN ACCURATE DIAGNOSIS & APPROPRIATE MEDICAL CARE.  

RELEVANT CASE HISTORY

After earning my Master of Arts in Educational Leadership at 24, I was a full-time English teacher for 13 years as well as a part-time athlete: a runner, a weightlifter, a yoga instructor. I traveled, played roller derby, and trained for triathlons through multiple illnesses, chronic diseases, immunosuppressants, major surgeries, and a variety of severe infections all for MANY YEARS.  (Read detailed accounts at my blog: RonniLee-FightingForIt.blogspot.com)

Around the time of onset, I had moved houses multiple times, started a new job, moved classrooms, and purchased a “fixer-upper” farm with my life partner.  On October 6, 2015 I came down with what I thought was a very bad flu, compounded by both an HSV2 outbreak and a yeast infection. (Symptoms: sore throat, white spots on tonsils, mild fever, productive cough, nasal & chest congestion, debilitating fatigue, body aches, plugged ears, loss of voice, etc.) During the months that I struggled with this “flu”, I was also going through intensive yoga teacher training to become a yoga instructor in addition to teaching high-school English full time.  This severe viral infection lasted WELL OVER TEN WEEKS before symptoms began to resolve.

Then on April 18, 2016, after a week of feeling fluish again (Dr. apt) and a week of feeling anemic (iron/ferritin labs), I experienced a sudden onslaught of progressive, debilitating symptoms stemming from seemingly EVERY BODILY SYSTEM AT ONCE (see list below), causing me to leave work in the middle of the day for a desperate visit to urgent care that revealed only inconclusive results.

I was never able to return to work or any of the above activities again.  From that day forward I have hardly had the strength to get out of bed most of the time, and ever since I have struggled enormously to complete even the most basic level of personal hygiene tasks or the smallest of household chores, always taking frequent breaks from being winded, nauseated, weak, dizzy.  Over-exertion or uncomfortable temperatures can leave me bedridden for days or weeks at a time, but even scarier is the steep decline in my cognitive function.  I’ve seen no significant improvement of symptoms in over two years and have no reason to expect any in the foreseeable future.  (Both my previous PCP and my psychiatrist agree in writing on that point at least.)

After a variety of basic blood tests, a referral to endocrinology to check cortisol function, and a referral to rheumatology to rule out autoimmune diseases, all to no avail, my primary care physician hesitantly settled on fibromyalgia as a “working diagnosis” under direction of the rheumy based on NOTHING more than my verbal description of my autonomic nervous system dysfunction, and then he gave up on any further testing or efforts to find a more accurate diagnosis for me despite my repeated requests for further referrals and testing.  He has since shuffled me into med-management, just reiterating at each appointment how imperative it is that I try my best to exercise every day.

Although I have many overlapping symptoms with fibromyalgia, I agreed that the fibro diagnosis didn’t quite fit me.  The fact that my symptoms involve the cardiovascular and nervous systems means that to me they were and are scary, so for over a year I searched for answers by myself.  I recorded symptoms, analyzed mind-body reactions, researched endlessly online, aggressively looked for patterns, reasons, strategies, diagnoses... and I finally found my answer, the missing puzzle piece. However, by then everyone assumed it was psychosomatic. The more I tried to insist on further testing, the less my doctors believed me.  So eventually I gave up, even though the closer I came to the truth, the more afraid I became about my own prognosis.

I have recently lost half my disability income for the rest of my life because of having a “questionable” diagnosis with no real evidence yet. I had until May 2018 to appeal this decision, so I found myself with good reason to renew my efforts to document evidence of my illness.  With the recent appeal I submitted, American Fidelity has given me until the end of September 2018 to submit evidence of my illness.

MY SYMPTOMS

Daily and in Waves (severity varies daily & hourly):

• Severe fatigue and lethargy
• Weakness / shakiness
• Arrhythmia
• Dizziness / lightheadedness
• Orthopedic intolerance (markedly significant decrease in symptoms when prone or reclined)
• Post-exertional neuroimmune exhaustion
• Increased bruising
• Enlarged liver
• Severe cognitive impairment / fogginess
• Inability to focus
• Inability to multitask
• Severe memory impairment, both short-term and long-term
• Slow or inadequate information processing (visual stimuli, conversations, reading, TV, etc)
• Aphasia: difficulty in finding words, forming sentences, remembering details, simple math, worsening dyslexia
• Digestive Shut-down
• Anorexia: total loss of appetite
• Frequent nausea
• Increase in GERD symptoms (med breakthrough)
• Upper abdominal pain with digestion
• Occasional “Stitches” = the same exercise-related transient abdominal pain (ETAP) that I used to get when long-distance running, only now they happen from simply digesting a meal, even if I am sitting or reclined.
• Inability to maintain homeostasis
• Extreme temperature instability / intolerance (i.e. environmental, exertional, digestive, etc)
• Night sweats / cold sweats / hot flashes
• Cold extremities
• Pain & Neuropathy
• Body / muscle aches, pains, tension, trigger points
• Worsening neck stiffness, pain, subluxation, exposed nerves between vertebrae (C6 & C7)
• Frequent intermittent numbness/tingling in hands
• Repeated various infections (viral, bacterial, fungal)
• Overactive senses / processing disorders
• Sensitivity to light 
• Sensitivity to clothing / pressure / textures
• Sensitivity to noises or chaos
• Very easily overstimulated
• Very easily overwhelmed
• Restless sleep
• Insomnia
• Inability to reach deep sleep
• NEVER wake up feeling refreshed
• Mornings are most difficult -- takes a couple hours of meds & massage before I can even get out of bed.
• Total loss of libido
• Mild long-term vision impairment

During or After Activity or Stress (sensitivity varies widely day-to-day):

• Tachycardia
• Shortness of breath
• Weakness / exhaustion
• Excessively hot / sweaty
• Delayed onset (up to 24+ hours)
• Total loss of cognition
• Total loss of speech / words
• Sense of urgency (adrenaline)
• Hyperventilation
• Vomiting / dry heaves
• Physical collapse
• Syncope
• Post-exertional malaise
• Delayed recovery (can take weeks on end)

Symptoms Worsen With:

• Any type and any level of physical or mental exertion or stress
• Upright posture (standing still < walking < seated < reclined < lying prone)
• Standing longer than a minute (worse than walking)
• Temperature instability (heat worse than cold)
• Hydrocodone/paracetamol narcotic (Rx for pain)
• Albuterol sulfate inhaler (Rx for asthma)
• Unprocessed meats, veggies, nuts, high-fiber diet (Difficult to digest = short term digestion & energy problems, though nutritionally superior for long term treatment. Solution: baby food, soups, processed meat.)

Symptoms Improve With:

• Reduction of external stimuli (all types)
• Horizontal posture (lying prone > reclined > seated > walking > standing still)
• Temperature stability (external assistance with homeostasis = air conditioning, fan, cool towel, blankets, heating pad, space heater, etc)
• Breo Ellipta corticosteroid inhalation powder (Rx for asthma)
• Valacyclovir antiviral (Rx for HSV2)
• Duloxetine nerve pain antidepressant (Rx for bipolar)
• Meloxicam anti-inflammatory (Rx for neck damage pain)
• Tramadol narcotic (Rx for pain)
• Carbohydrates = fast/easy energy supply for short-term effects. (Long-term high-sugar diet increases inflammation, SIBO, candida, pouchitis.)
• Antimicrobial/antioxidant home remedy that I drink all day every day = fresh lemon, green tea, aloe vera, Stur (stevia + fruit/veggie extracts for flavoring).

Symptom Progression/Cycle:

Below is a description of dysautonomia written by a doctor specializing in chronic pain and fibromyalgia.  It is EXACTLY what happens with my pattern of symptoms and has been emailed to my doctor with no response.  By now the panic part of the below equation has subsided since I now know where the symptoms are coming from, but the following description of the progression of physiological responses and symptoms is the most accurate description I have found for what I experience multiple times per day...

“When [patients] are under stress, the stress hormones are not released during the stressful period. They just keep working, utilizing normal energy and feeling exhausted from the whole ordeal. Eventually the ordeal is over, they get to go home to rest (super-duration). Any additional physical activity or any mental activity causes the threshold level to be reached and the stress hormones begin to be dumped into the body (hyper-excitability). The patient experiences a rapid heart rate, a sense of urgency, and shortness of breath. Adrenaline begins to circulate in the body and the patient feels hot, cold or sweaty. Because the person is not doing anything stressful at that particular moment and can see no significant precipitating factor to elicit this type of response, the patient may become more fearful. The patient begins to hyperventilate and the heart rate goes up faster, inducing extra adrenaline to be secreted and the other stress hormones to be released rapidly (super-susceptibility). Eventually the patient reaches a point of extreme panic (super-reactivity) and are often brought to the Emergency Room for work up and to be treated with various medications and sent home with usually negative findings.

“Within a short time the same process will be repeated. These cycles will continue until all the stress hormones are exhausted from the adrenal glands and from the central nervous system. Then the cycles will stop so that the body can regenerate all of the stress hormones. If these patients will later again experience another stressful condition until the delayed threshold is reached, the panic attack cycle will repeat itself. Therefore dysautonomia of the hormonal stress response elicits what many times people consider to be panic attacks of unknown etiology.”

http://www.prohealth.com/library/showarticle.cfm?libid=7850

Welcome to Stanford

He started by reviewing my files and health history, and then the exam included basic physical,  BP & HR both reclining and standing, rhomberg test, tandem test, cold sensitivity, poking areas of my body with a pointed stick, tuning fork vibration test, tunnel vision test, touching nose with eyes closed, hand-eye coordination, hypermobility tests (thumbs, knees, elbows), reflexes, looked at scarring, stretch marks, skin elasticity, finger-to-wrist ratio....  Then after some further discussion and questioning,  the autonomic specialist at Stanford explained that he suspects a combination of overlapping symptoms from myalgic encephalomyelitis, postural orthostatic tachycardia, and ehlers-danlos spectrum that all lead to the central nervous system hypervigilance which causes my hyper-sensitivities (light, noise, touch, movement, etc).   The actual testing that will validate a diagnosis of these conditions will come via referral to ME clinic, dysautonomia testing, and gastrointestinal motility specialist.  I am very satisfied, as these are all things I suspected myself, so today's appointment was quite validating.    Exactly what we were hoping for.  

Ray of Hope

I got this packet in the mail a month ago but have waited to open until now because I was not quite ready to believe it...   Didn't want my expectations to get too high too quickly after all this time.  But reading a conversation in an online support group about someone else waiting to get in to Stanford, one of the one of the only health centers to have a disautonomia and myalgic encephalomyelitis clinic (which makes it one of the top and highest-sought medical centers in the world for people with my disease) made me not only feel a little bit guilty but also wonder what doctor I was seeing in what clinic and specialty. So I had to open it.....  

Picturing that this might actually happen for me is bringing me to tears.   I have been waiting over two years for an accurate diagnosis as I have been getting worse, told by doctors to go home and take better care of my health (even though I used to be an athlete who ate only the most organic highly nutritious foods), told by my previous PCP to exercise as much as possible when I could barely stand… all of them refusing the tests and referrals I was begging for, shoving me out the door in tears with those blank stares that refuse to make eye contact.  One specialist I heard from online wrote that often patients who self-diagnose this disease are more accurate than the doctors are as long as they do their research, which I certainly have ten times over!

I have a one-hour consultation with a neurlogist at Standford who specializes in autonomic disorders, at which point he will decide which tests to run. Spinal tap should be at the top of the list according to my PCP due to my recent off-the-charts Epstein Barr Virus antibody results.   Also likely to be on the agenda: MRI and SPECT brain scans, tilt table test, exercise stress test, sweat test, cognitive functioning, and other fancy disautonomia measures.  

Whatever hell I may endure to go through this testing will be well worth it since I have been waiting years for someone to take me seriously and look at what is wrong with me. So far they sound pretty welcoming...   Just please pray for me that this doctor is able to convince my insurance to cover this testing since we are paying out-of-pocket for the consult (over $800).

(NOTE:  The work on my calendar in the screenshot of my phone desktop refers to my hubby's work schedule, not mine!  As if.  😖)