Rejuvination

When shit happens, turn it into fertilizer.

-Kute Blakson

________________________

From the beginning, this blog has always been about staying fit through chronic illness. Three years ago when I suddenly became totally disabled from a new disease called myalgic encephalomyelitis (M.E.), my world was turned upside down. One huge obstacle that differentiates this illness as unique is called exercise intolerance. It means that when I exercise, my disease is not just exacerbated but progresses to a new level of severity, which means my tolerance for exertion is that much lower, requiring even less energy to cause another crash and reduce my exertion threshold even further. This can create a downward spiral that is sometimes impossible to escape, leading people with M.E. to become essentially paralyzed in their beds, unable to even move their arm or have the energy to digest food. Many are fed through NG tubes and/or IV lines... Corpses that spend years in bed, unable to move or even tolerate touch from a loved one, alone in their agony and waiting for a cure. (Whitney Dafoe is one example.)

This was an incredibly difficult lesson for me to learn.  I even tried just walking for fifteen minutes a day, and that would steal all of my energy for the entire day and plummet me into a crash. I was physically broken…. which led me to be emotionally heartbroken as well. As my few loyal readers know, physical fitness has ALWAYS been a huge part of who I was. In addition to many other parts of myself I felt I had lost from this disease, it had also taken away my athleticism. I started to fear atrophy and deconditioning, something I don’t think I could live with.

I used to use charts like this to train, but this chart is no longer accurate for me since 
M.E. drastically changes our maximum and aerobic heart rate zones. Having just 
turned 39, I am now probably closer to the numbers for someone in their sixties.

But that soon became the least of my concerns. I didn’t even have enough energy to wash my hair or shave my legs. I would crash and be stuck in bed for a full week from cleaning the house or going to the grocery store. Even my super-gentle therapeutic yoga class designed for the chronically ill and elderly was far too much for me to endure. My heart races like I’m running a marathon just from standing and walking across the house. Suddenly fitness was no longer a priority compared to survival. As I write this even, it has been several days since I’ve showered.

My HR varies day to day
or minute to minute

However, my close friends, family, and loyal readers know how driven and passionate I am, especially when it comes to my goals. I am and always have been a “go-getter”. Six years ago in this very blog, I decided to do the impossible when in a somewhat similar situation.  I was on an immunosuppressive drug that actively turns muscle to jello and causes major weight gain and swelling. Doctors, online sources, and everyone who’s been on this drug for longer than a few weeks knows this to be true without a doubt. I decided after several rounds of this god-awful “therapy” that I was going to do the impossible. I was not going to let it get the best of me this time, and I fought against the effects of the drug. With sheer will and determination, I proved to myself and the world through severe calorie restriction and continued running and weight-lifting that I could not only prevent the weight gain and disintegration of my body but actually gain muscle tone.

Over the last three years since I’ve had this new chronic illness, it has been proven to me time and time again through not only personal experience but through clinical studies by the experts of this disease that exercise is not only hurtful to our bodily state, symptoms, and prognosis but also very dangerous for anyone with this disease. But I have learned a lot since writing this blog AND since becoming ill with myalgic encephalomyelitis. I have been absorbing knowledge like a sponge about what and how and why we cannot tolerate exercise. I’ve learned about pacing and how to prevent crashes. I’ve learned how to listen to the tiny, minute signals from by body telling me that I’ve had enough. Letting me know that one more move will cause a crash.

I’ve learned that if I keep my activity to under two minutes, I can be okay. I’ve learned that some yoga poses can actually drop my heart rate instead of increase it. I’ve learned that my body is much more tolerant with poses that keep me in a inclined or reclined position rather than standing upright. Armed with this information combined with my heart rate monitor and my previous expertise on diet, exercise, and fitness, I now believe that I can come up with a regimen that will allow me to again regain my muscle tone and become as fit as possible in my new position.  I will never be a runner again, and cardio exercise will always be dangerous for me.  But I learned a long time ago that the purpose of cardio is just to keep the heart in shape, and that weight gain or loss happens much more readily in the kitchen than the gym. So as long as I watch my diet (also affected by this disease; more on that in a later post), then gentle stretching combined with incredibly short segments of mild and carefully-monitored static internal core exercises (such as kegels), body-weight exercises (such as shallow squat), and yoga poses (such as bridge) that minimize movement and maximize important bio-mechanical muscle activity all just may be able to help me regain control of my fitness.

Today is the first day of this new journey. This new goal I have set for myself. I am yet again about to do the impossible. My personal nickname and online alias has been “bootstrap” for as long as I can remember, because I have been picking myself up by the bootstraps every day since childhood.

Well, here I go again. I am picking my broken body up by the bootstraps and tromping in a new, much more gentle and forgiving direction. No more beating my body into submission. This path is all about listening to the body and treating it as fragile and precious. You don’t know how valuable something is until you lose it. I have lost so much with this one single illness… including 80% of my previous functioning, both mental and physical. I am treasuring that last 20% as if my life depends on it, because it does.

_____________________________

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.

*     *     *

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!

*     *     *

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!!

Choosing Tools = Empowerment

As I come to terms with my own changing limitations, I am learning to make my shrinking world more functional.   I have to be able to run my life from bed if need be.  After being inspired by a bedbound fellow M.E. warrior in the UK, I put my retired teacher skills to work.

Pacing is crucial to patients with ME. If we over do it one day, we could potentially cause a hard crash, severe symptom flare, and/or permanent decline and progression of our disease.   Therefore, learning how to function without over-exerting ourselves it is critical.

I discovered that one of the areas in which I struggle the most when I crash is communication. So I have to figure out ways to communicate other than speaking.   And because  we can lose function in big chunks all at once and with no warning, I have to be prepared  for what happens when I get even worse. 

Take a look at the photos below to see all of the new pacing and communication systems that I have recently put into place.

I have been fortunate enough to find and be able to afford some tools to help me function from Stickman Communications as well as Amazon Shopping, but many of these can also be recreated at home from recycled materials.  See how creative you can get...