I am one of the #MillionsMissing and I Thank #Nurses Today

The roots of my illness were visible very early on, but two events in particular led to my downfall from being able to work.  First, I had a lot of dental work at age 18.  Some of it was caps which didn't fit in my small jaw and caused TMJ, which later triggered one of the types of headaches I have.  I have a genetic disposition to migraines anyway and in two years, I had classic migraines.  Second, I had food poisoning at the same time as the first SARS epidemic (2004).  I suspect I had SARS that same year as well. 

Within two years I had been hospitalized with multiple Pulmonary Embolisms and three lung infarcts. My lungs have never fully recovered.  According to even the most conservative reading of the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Post Viral Fatigue medical coding, I have post viral fatigue.  To the best of my doctor's knowledge I had reactivation of "Mono" which is Epstein Barr Virus around 2010, and by 2012, I was having trouble working.  In 2017, we discovered I have Celiac Disease as well.  CD can trigger if you have the genetics for it, by a food poisoning event or other infection.

My predicament now, is how do I get well?  Can I beat this in time to go back to work, in any capacity?  I doubt if I could ever handle the on-call demands of an IT career again.  But not all jobs require on call work.  What if I beat it next year, and I'm only one year away from being age 50.  Who will hire a woman who is 15 years from retirement and hasn't had a job in more than 5 years? An illness in mid life can derail everything.  Additionally, I'm scared I will be hired and then have a relapse from the increased stress.  I would blame myself for such a failure, even if the truth is, I should blame my illness.

Obesity


Additionally there's the "fat" problem.  I wasn't "fat" until after my lung problems happened.  I did develop some extra padding around age 30, but it was just ordinary fluffiness until my lungs were damaged.  I fought valiantly to keep moving.  I was a member of gyms and was there every day.  I tried so hard to keep it from getting this far.  I tried every diet, I tried every protocol.  Even keto failed to reset my weight.  Now there's a new theory claiming that it's the type of fat you eat.  I'm so tired of theories.  I don't know whether I should jump to this or this next.  Or not jump at all.

There are so many people out there making sincere efforts to decode the mystery of American obesity and I appreciate them all.  The fact is, I will be hobbled by my fat, even if I beat ME/CFS.  People will look at me and assume I overeat and it's all my fault and I'm a pig.  People do that because they're terrified of being in the same predicament.  I understand.  I don't want to be like this either.  But I have to count my illness as more important than my physical appearance.  I have to solve this puzzle one thing at a time.  There's no quick fix.  I have tried many of them.

Prevention


My situation could've been prevented.  Infectious Disease experts could've treated Mono with the seriousness it deserves instead of giving it cute names like "the kissing disease."  They could raise the index of suspicion for illnesses which have the potential to disable someone, regardless of "rarity."  Health departments could've inspected better and prevented my food poisoning.  The food poisoning could've triggered testing on a regular basis to check for Celiac activation since we know that's a trigger and I had continual gut issues.  The pulmonologist who recklessly took me off warfarin could've told me to take natto instead.

My hindsight tells me I could've handled many aspects of this better too.  I could've not assumed I was invincible while I was healthy.  I could've applied more critical thinking toward questioning veganism. I could've listened when my first gastro told me carbohydrates can be causing some of my problems (this was several years before Monash University in Australia discovered the effect of FODMAPs).  I could've accepted a CPAP machine when it was offered the first time.  It's not all everyone else's fault.  I played a part.

Disability to Work or Inability to Speak 

The end result is, I'm one of the #MillionsMissing and besides my blog, I don't have much opportunity to participate in normal life.  I don't have the energy.  This disease may be multifactorial.  Or it could be a similar reaction to overwhelming stress on the body, no matter the original "factor" that caused it.  Researchers are looking for cytokine fingerprints and drawing distinctions between "walking" ME/CFS and "severe" forms.  Some with severe illness are no longer able to speak. 


However, as MEAction has noted, research funds for ME/CFS are scarce and disproportionately low. And there are predictions that ME/CFS may rise along with Covid-19.  That would be a double-disaster for minorities and immigrants, who are already targeted by conservatives with accusations of seeking "welfare" and being "lazy."  Neither accusation is factual.

I don't think it's "scientific" to dismiss someone's physical illness as an attempt to avoid work.  But our Infectious Disease narrative continues to be that we are a first world country where we don't usually have bothersome infectious diseases.  So the default is, we don't look, which isn't scientific at all. It's cheap though.  Thrift should not be so extreme as to disable people. If our assumptions were true, and we really did understand nutrition, then we should be glowing with health. But we're not.


Florence Nightingale


Today is also International Nurse's Day, so I extend a big thank you to all nurses. Confusingly, National Nurse's Day in the US is May 6, and International Nurse's Day is May 12.  But whatever the date, the appreciation is sincere.  Apparently Florence Nightingale died of an illness that sounds like it could be ME/CFS but may have been triggered by unpasteurized dairy products.  She was accused of being a "malingerer" before she died.  That's the same accusation often leveled against ME/CFS patients, even today.  But a recent biography puts paid to that myth (and several other myths) about the most famous nurse of all time. 

Photo by Karolina Grabowska from Pexels

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