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...

Black Dress Day

BLACK DRESS DAY  🖤  A SIGN OF HOPE

[See photos for explanation of Black Dress Day]

A day late on posting this due to doctor appointments and a crash...  But here is the sexy slinky black cocktail dress I bought years ago and dreamed of wearing on a night out with my future husband.  Right before I went down with M.E., as an athlete I was in the process of getting into killer shape so that I could show off my best assets in this simple dress.  To this day it remains in my closet unused.  More like a funeral dress for my former self as well as all those who lost their lives to M.E.

At the end of M.E. awareness month, I have run out of steam and will be slowing down on my activism.  However, I must note how VICTORIOUS I have been during this month of fighting for my right to exist. I was able to participate in a demonstration in which I felt heard and seen. I was able to gain new friends and support networks both in person and online. I was able to enlighten many people to the true nature, severity, and gravity of M.E.  I was able to convince my doctor that there is something seriously wrong with my body. I was able to schedule appointments for intensive diagnostic testing at some of the top medical centers in the country.  I was able to adjust medications to increase my level of comfort.  I was able to gain tools that will help me set boundaries and communicate my needs as an M.E. survivor in ways that will improve my quality of life. 

So however much all of that may have cost me  in the progression of my health, it was all worth it.  Therefore, this month's black dress is a sign of hope. Maybe this was the month that set me on the path back to being able to wear it some day.

Cathartic Activism

My link to the world of M.E. activism happened at the time in my life that I needed it the most. After two years of being shoved out of doctors offices in tears, dismissed and abused by medical professionals who were supposed to diagnose and treat me, having to beg for and be repeatedly denied medical testing and referrals, of being harassed in public because my disability is not visible, of losing my freedoms and abilities both in small pieces and in big chunks, of feeling like pieces of me have been stripped away until there was nothing left... I was in a crisis mode, feeling as if my entire self was disappearing completely.  It was  the week that triggered a dangerous hypomanic episode of my bipolar disorder, something  that I cannot afford to ever let happen again, because the overexertion of it has since progressed my disease to a whole new level of severity.

The Myalgic Encephalomyelitis Awareness Week during which I was able to attend this rally completely changed my outlook. I was able to gain a voice, a network of fighters, a bit of validation, a bit of empowerment.  As soon as I walked up and put my empty shoes on the steps with all of the others of those who are missing from life... The tears started streaming down my face, which continued on and off throughout the event as I was hit by powerful waves of emotion.

You will notice in the pictures I had to use tools to mitigate my symptoms, sensitivities, and processing disorders due to this disease.  The easiest way to do that is to limit incoming stimuli.  The neck pillow helps support my neck pain. The hoodie on it along with the sunglasses blocks out light, peripheral vision, painful eye contact. The noise cancelling headphones block out distracting background noises and make close/loud noises less jarring. My service dog in training was to help keep me upright and treat my symptoms as well as provide both physical and emotional support.

My Facebook post that day:
"POWERFULLY CATHARTIC & EMOTIONAL:  Crashing super hard right now but totally worth it. Grateful to all those who had the strength to come out,  to all of the public speakers, to everyone who is here supporting someone who couldn't, and for the opportunity to feel like maybe my voice was heard, even if just for a moment.  Glad I made it out there and glad I made it home safe."

#MillionsMissing  #MEAwarenessDay #MEAction  #CanYouSeeMENow  #DoctorsCantDianoseMe  #WeJustDisappear

Myalgic encephalomyelitis demonstration rally on the steps of City Hall in San Francisco, May 12, 2018 -- International ME Awareness Day... I was crying in many of these photos.

Post-Exertional Neuroimmune Exhaustion

THE REAL DANGERS OF "PUSHING THROUGH":

I overdid it majorly the last few days...  I tried to accomplish some adulting on days I knew I had already crashed and was needing recovery from active post-exertional neuroimmune exhaustion (PENE), active infections, premature menstruation.... but today's priority was important, so instead of listening to my screaming body, I medicated and caffinated through the pain and exhaustion to accomplish these important adult tasks.....  But by the time I crashed on top of a crash halfway through today (didn't have my pain meds with me), my disease had actually progressed to a new level of severity. 

Noise-cancelling headphones, dim/no light,
 neck support, heating pad, bed, and meds are all 
essential for me to show show any sign of improvement.

On the drive home today, the brimmed hat I was wearing in addition to the sunglasses AND closed eyelids was not able to block out enough of the light coming in the windows.  The faintest glow that still got through my closed lids was painful, making all my symptoms worse.  For the first time today, on top of my radiating and shooting and aching pains throughout my entire body, unimaginable exhaustion/fatigue, increasing nausea and disorientation... I needed to actually cover my face with multiple layers of Josh's shirt (he was driving) placed on top of my sunglasses AND my still-closed eyelids, reclined seat, neck support (Josh's shorts), and quiet car for a time in order to finally gain some relief. 

Many of the most severe M.E. patients are completely bedridden and feel this sensitive to light, sound, and touch every day of their life.... some of them "eating" through feeding tubes because digestion requires too much energy.  As I haven't eaten yet today for the exact same reason (the three french fries I tried gave me an awful gut ache and indigestion), and as I begin to rely on my service dog for mobility support at home now as well as in public (like to help me get from the bed to the bathroom today), I feel myself getting closer and closer to that severe existance every day.  I DESERVE AN ACCURATE DIAGNOSIS BEFORE I GET THAT BAD.  Other doctors are still just telling me to "go home and take better care of my health" and to "exercise as much as possible".  They don't understand the danger that is putting me in.  It's just not right.  Thank God I finally found someone who will listen. Actually looking forward to the testing that will likely be hell on Earth to live through.

xo  -R.