Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Thursday, November 8, 2018

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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