Tag Archives: #millionsmissing

One of #MillionsMissing

My daughter has ME – Myalgic Encephalomyelitis.  She’s one of those “#Millions Missing.”  On May 25th of this year, there was a world-wide campaign during which millions of pairs of shoes were placed in front of government buildings to show support for the millions of patients who are “missing” from participating in a “normal” life.  A life which they, against their wishes, were forced to leave, due to the debilitating nature of this horrible disease.

There is no known scientific diagnosis; no cure; and no recognized treatment.  Expert clinicians are still experimenting with medications, supplements, etc., while trying to find ways in which to help their patients.  Some things work – but not for long – to help relieve symptoms.  Each patient reacts differently to these “experiments.”  No such thing as “one size fits all.”

My daughter’s symptoms started approximately 25 years ago.  It was not a sudden onset like many other patients.

It occurred slowly over these many years.  The last two years were the worst.  She was still working, but truthfully, towards the end of 2014, I was positive she couldn’t continue with her job.  I don’t know how she did it, and looking back, she doesn’t, either.

She sort of set goals for herself.  Just another month, just another week.  She finally gave it up at the beginning of this January, when her body just gave up.

She cut her hair years ago.  She didn’t have the strength to take care of it anymore.  She used to have such beautiful, long hair.

There were many other activities of daily living (ADLs) she had to stop.  Frugally managing her time and energy allowed her to hold on for another year at the work site.

It wasn’t only the profound exhaustion.  There is the pain – in every part of her body.  She has told me that even her hair feels pain during the worst days.  The viral outbreaks.  The painful and debilitating chronic migraines which could last for days and keep her in bed, immobilized.  Did you ever hear of a migraine in the optic nerve?  Now, I have.

The “brain fog” and the constant wanting to put her head down and sleep.  Concentration was non-existent.  All these symptoms, put together as they were, forced her to bed.  Work was out of the question.  And she suffered all these and more, while trying so hard to keep her job and not appear to be sick at the office.  They frowned upon “being sick.”

She spends most of her days either lying on the couch or in bed.  It’s not where she would like to be.  She is forced to give up a “normal” life.

Talking on the phone is exhausting, and many is the time I’ve told her to hang up because I can hear and feel the extreme effort in her voice as it slows and gets slurry.

ME patients ARE NOT LAZY; THEY ARE NOT MALINGERERS.  Too many patients have lost their families and friends and even doctors.  These people refuse to believe the patient is REALLY SICK and they crossed the patients off their “list.”  They walked away.  That may be the most debilitating and greatest loss of all.

I’ve touched on only a very small amount of her symptoms.  The general public will find it impossible to understand that which patients go through in trying to manage from day to day; hour to hour.

Each day is different.  She never can expect that the next day will be better.  Too many times, it is worse.  There really is no such thing as “better.”  Sometimes she knows she has over-spent whatever energy (spoons) she had on the day before, and her body lets her know about it, for sure, during the next few days at least.

Myalgic Encephalomyelitis is a multi-symptom chronic disease.  All patients do not suffer in the exact same way; however, they do share most of the known symptoms.  As I said above, “each day is different” for each patient.

Sweetheart, if you are reading this, remember I love you so very much.  Words are not enough.  You know.  It is there in the depths of my being.

This post is my ode to you.  You are the most inspiring person I’ve ever known.  And you happen to be my daughter! 🙂

 

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Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

 

Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.

“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.

The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.

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Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert)

#MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners of those shoes due to being stricken with this devastating disease.

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[Video and photos from Solve ME/CFS Initiative]