An Unacknowledged Grief + Solve CFS

"…in order to fly, butterflies' thoracic muscles must be warmed to at least 80 degrees F, so they bask in the sun with open wings preparing for their next flight."

Monarch Butterfly this Fall

Today is Giving Tuesday. During Hanukkah, Mom and I made the decision several years ago to donate to charities rather than exchange gifts. This has made life more meaningful and, honestly, a lot less stressful. Our largest donation goes to Dr. ANS's research fund.

Hanging Out on Our Yellow Mums

When I first became sick in 1998, Chronic Fatigue Syndrome was dismissed and mocked as the 'yuppie flu' and an illness that really couldn't be that bad. 

One of the only organizations available as a resource at that time was the CFIDS Association of America, which has continued to evolve and grow under the exceptional leadership of Kimberly McCleary, who just recently turned the reigns over to a new president.

As the years went on, I became distracted by my other illnesses and diagnoses (and misdiagnoses), but at the end of the day my major diagnoses remain CFS and ANS Dysfunction (or Dysautonomia)--two often co-mormid conditions. We no longer believe that I have Lyme or any other tick-borne diseases.

It Stayed for a Very Long Time Catching Some Rays

In 1995, Dr. Peter Rowe studied patients with CFS. In this landmark study, he gave patients a tilt table test. Some patients with CFS tested positive for Orthostatic Intolerance, while others did not. I am one of the patients who has CFS with the ANS dysfunction. When this is the case, treatment is most focused on the ANS issues, but we are still considered CFS patients.

Considering that this connection was only made in 1995, it is understandable that CFS and ANS Dysfunction are still relatively misunderstood. But the handling of these illnesses by the CDC, NIH and the medical field in general has been so shameful, distressing, and quite frankly outrageous, research has been pushed back by decades. The CDC was caught misusing money that had been allocated for CFS research, setting back the chances for treatments by decades.

The number of doctors who treat CFS and related illnesses is incredibly limited. Those of us, like myself, who have doctors who take care of us are truly the lucky ones. And I got the Best. Ever. Doctor. I want everyone who is sick to be so fortunate.

Preparing for Flight

The CFIDS Association has blossomed from a small grass roots organization into a major force in the effort to SOLVE CFS. It is now a research-focused organization, and I have recommitted myself to supporting finding answers for my illnesses through the following two means: 

1. Supporting Dr. ANS' research fund at his hospital

(This is my family's greatest focus, given the role Dr. ANS plays in my life)

2. Supporting the CFIDS Association of America's mission to "make ME/CFS understood, diagnosable, and treatable", vision of "a world free from ME/CFS",  and core values of purpose, collaboration, respect, integrity and innovation.

Sunning

In over 15 years, I've functioned at a level no higher than 30% of a healthy person. 

Over the past month, I've fallen back to my more typical level of about 20-25%. At times, I've been bedridden and functioned somewhere between 10 or 15%. 

Resting In Another Part of Our Garden

Right now I'm feeling sad because I have relapsed from the higher level of functioning I had been enjoying. 

As I mentioned in an earlier post, I've been 'sick on top of sick'. We also discovered that it seems I had a negative reaction to the Cipro and this what is causing so much malaise. (Thank you to one of my doctor friends for reading my blog and putting two and two together). This can happen with Cipro and other related antibiotics to patients with certain illnesses. I really didn't want to take the Cipro, but we couldn't get my insurance to cover the preferred medication, and now I'm paying a hard price for it. 

I'm also continuing to fight whatever 'common' bug I have.

Preparing for Migration

That small change in percentage makes life much more difficult. It's harder to do the new tasks I was able to engage in: making my own smoothies, playing with the puppies, writing snail mail, watching more complex TV, listening to more detailed books on audio, writing more, going on outings without feeling so lousy, being able to go to PT, putting on make-up, doing my hair and putting on cute clothes, and enjoying time with friends.

It Was Amazing to Watch This Guy!

One day in counseling, my therapist said that chronic illness is an unacknowledged grief.

This may be one of the most powerful explanations of the type of grief I experience. It's a kind of grief that is present every day, in all aspects of daily living. It's big and small. It's grieving big things like babies and marriage and family and career and travel. It's grieving more broad things like physical independence and financial independence and freedom and health and choices. It's grieving not being able to go for a walk, make a meal, go out for coffee, or whatever it is that brings so many others joy in every day life. 

One of My Favorite Creatures on Earth

Evelyn's words have stuck with me so profoundly. I've never known how to describe the grief that is chronic illness. It's so completely all-encompassing. 

Even while many of us live fully with illness, in spite of illness, and because of illness, we still grieve. 

It's impossible not to. And probably not human!

Beautiful

So,when the CFIDS Association of America sent out a Giving Tuesday email today with a video entitled "What Would You Do?" based on the response of 1,784 CFS patients to the question "What would you do if you were completely well tomorrow?" I cried. I could identify with so many of the responses. That's the student body size of my alma mater, Davidson, wondering out loud what they would do if they were well tomorrow. 

Millions more of us. Yes, literally millions, who didn't respond to the survey are trying to live in the present, live fully, embrace the simplest of joys, but remind ourselves that maybe some day, if not for us, an answer for CFS will come because of the hard work of people like Dr. ANS and the CFIDS Association of America. 

I try not to ask too much of your time or to post too many videos, but I felt this video so powerfully expresses the unacknowledged grief of CFS, what it feels like to live with it physically, and why I've recommitted myself to this organization.

On Giving Tuesday, it is with deep gratitude that I thank the CFIDS Association of America, Dr. ANS, and all of the other organizations so tirelessly working to solve CFS.

Blessings,

Emily