Communication Breakdown

There was a point in my climb up the career ladder that I started talking about “the email problem.” At the time, most of my job was spent “in the field” — opening restaurants, traveling from store to store, hiring, training and meeting with employees. As my shifts were mostly on the floor, observing restaurant operations, the email problem grew and grew and I would spend all of my “downtime” trying to catch up. I never sat in front of a TV or ate a meal without my laptop, I stopped reading books. Eventually, I was in an office full-time and I still could not get on top of the computer work, even being at a desk all day. This was before I had a blog and blog comments to answer or Facebook messenger or WhatsApp. This was before I knew that Facebook groups existed, before I had cultivated friendships with 100% online communication. And this was before I got sick and wanted to ingest every bit of information that might help me. I have saved, bookmarked and sent hundreds of articles, educational videos and podcasts to myself, in different places, on different devices. I have 50K+ emails that I want to deal with, but I’ve compartmentalized them into some dark room in my mind so I can function. It’s now an “information problem” or a “communication problem.” It’s unmanageable. But I do it to myself.

Screenshot 2016-09-03 at 1.45.24 PM

My personal gmail accoount.

I’ve always had a methodical way about how I tackle life. I like to do things in order, finish them and file them away. When I haven’t dealt with something, it becomes a small weight in my mind and, though I may look as if it’s not bothering me, it is. They are. They’re heavy. My husband is the complete opposite. He can’t understand why the ripening tomatillos and our over-burdened plum tree stress me out. He has no problem with piles of disorganised paperwork and chaotic junk drawers all over the house. If he doesn’t answer emails, it doesn’t weigh on him. Come to think of it, that’s another thing that drops little lead pellets in my brain: messages that I’ve sent that don’t get replies. They don’t weigh as much as emails I haven’t answered, but they still take up room at the back of my mind. I like discourse: unfinished conversations nag at me, even if those “conversations” are links I send my husband in a PM. A month later, I’ll say, “Did you see that video? You never mentioned it.” God, my skull is full of thousands of ball bearings. No wonder my neck always hurts.

Screenshot 2016-09-04 at 3.49.36 PM.png

I often wonder how I would handle this illness if I were more like my husband. He is a content person. That sentence sums up our greatest difference. He is content with our home, with his routine, with his simple diet. He is content with his body, with his habits (good and bad), with his legacy, or lack thereof. The truth is, the only things my husband wants to change are things that I tell him need to be changed for my happiness.  I have never been content with anything, ever, never. My need to experience… it’s like a rabid, ravenous hunger. New places, new people, new information. It’s like a constant electric current that makes contentment the least accessible state of being imaginable. When I’m at home, I want to be on the road or on a plane. When I’m traveling, I long for my garden haven. I ruminate on the past and worry about the impact I will have made on the world when I’m gone. I’m critical of my body and chastise myself for my bad habits. I want to watch every movie and TV show, I worry about all of the wonderful music I am missing, I collect hundreds of books that I never read. I WANT ALL THE FOOD.

More and more, I realise that this fundamental trait is the reason I don’t sleep. Every night, I put it off to do/read/watch one more thing. Every morning, I can’t wait to get up and tackle things, even if that “tackling” is lying on my back in a dark room, looking at my phone. It doesn’t matter if I wake at 6am or 11am, as soon as I am conscious, my brain is like a bullet train. A bullet train that can repeatedly dichotomize and travel down dozens of branching tracks with the same enthusiasm… but they all fall off the a cliff after a very short journey. Because that’s the real problem. This year, my worst symptoms by far are from the shoulders up. There’s still a lot going on in my body as a whole, but the truly limiting factor is my brain. I don’t have enough hours of neurological clarity to manage 1/10th… no, 1/50th, maybe less… of what I want to and what I used to. That is now my true disability.

Recently, I’ve had a few people ask how I am because I haven’t written much lately. The short answer is I’m okay. There’s so much I want to write about, I simply stopped writing. Mostly because I know if I hit that cognitive wall while writing, I won’t be able to manage anything else, like preparing food. Also, when I gained some ground, it quickly got filled with doing more chores for myself to alleviate my husband and tackling my to-do list. I read all messages and emails (for the most part), even if I am remiss in replying. I promise you, all contact touches me deeply and adds fuel to my tank. It is never not appreciated on a very conscious level. So, bear with me and, if you can tune into your psychic abilities, you’ll hear me sending my love to each of you and we’ll never feel out of touch.

Title Credit

Advertisements

Canary In A Coal Mine film needs our help!

canary

Please watch this amazing video (you’ll be inspired, I swear – there are cameos by Dr. Enlander and Dr. Klimas), share the link and support the project, if you can. There’s only 27 days to go. Help this film get made to raise awareness about ME/CFS. Even $1 will help!

Also, you can share your own stories (“whether you are a canary or a spoonie”) here.

—————————————————————————————————————————————————————————————————-

Stay tuned, I have partially written blog posts on the following topics and I aim to finish them sometime in the next few years ;):

  • Thoughts on 2 years sick (Sickiversary and 3rd Year Resolutions)
  • A prequel and sequel to my “How I Got Sick” story, which I never actually finished
  • Tilt table test and other autonmic testing
  • Mast cell disorders and low-histamine diet
  • Update my surgery post to include mastocytosis society’s guidelines
  • Allergies and sensitivities: drugs, food, dogs, dust, smells, life
  • My new environmental doctor and all the testing that’s going to cost me a fortune
  • HR, BP, circulation, and new symptoms in my hands and feet
  • How to start moving again
  • Dysautonomia
  • My scooter
  • Update on symptoms, diet and supplements
  • Photo slideshow of my crazy life
  • “Visible Illness”
  • Everything I’ve learned about helping sleep (not that it’s helping)
  • Recent NY Times articles
  • Dr. Vallings (my mother attended her talk in Ireland)
  • Dr. Chia and Dr. Kogelnick: thoughts on traveling to a specialist
  • Book reviews: Dr. Vallings, Dr. Bested, Bruce Campbell, Dr. Teitelbaum, Toni Bernhard, Dr. Blum (Immune System Recovery Plan), Dr. Turk (Pain Survival Guide)

Christmas presents!

Here are some of the gifts I received that are great for housebound people!

DVDs and books
DVDs and books!

snuggie
Snuggie!

onesie
Adult-sized onesie!

And brilliant gifts for people with temperature control issues:

gloves
Fingerless gloves!

clothes
Cozy clothes!

heating pad
Heating pad!

And for someone with a headache (I thought it would aggravate it, but it soothed it!):

head massager
Head massager!

And for a meditator:

budda

CD

lamp

And a great gift for that special someone who destroys their lips nightly because they have to wear tape over their mouth as part of the cpap ritual:

lip balm

Thank you friends and family!! You are so thoughtful and I love you! Bless us, every one!

Liebster Award Part 1 ~ 11 Things About Myself

I’m afraid I have to fulfill the Liebster Award criteria in increments since I’m not having the best week. So, here’s the first part.

List 11 things about yourself:

1. I was born in Japan.

2. I spent the majority of my formative years in Dublin, Ireland and pine for that city every single day.

3. I’ve been in 27 countries. One of those was an airplane stop (El Salvador) and some of those were only for a day or two (Belgium, Luxembourg, Monaco), but I am so grateful that I traveled where I did while I could. Highlights: Soviet Union, Austria, France, Costa Rica, Morocco.

4. My friends and I were mugged when we were in Morocco. He said, “If I had a black heart, I would kill you and take your money. But, I have a white heart, so I just ask you to give it to me.”

5. Surprisingly, I think the thing I miss most about my pre-M.E. life is laughing. I would laugh so much at work. I miss the banter of those crazy personalities. No matter how bad my day was, I loved my co-workers fiercely. We accepted each other fundamentally, even when we argued… and we always wound up laughing. It’s hard to find opportunities for laughter when you are housebound with no social interaction.

6. I love good movies, books and food in a way that is…voracious. I crave the experiences, revel in the moments and treasure the memories.

7. I used to write poetry. A lot.

8. I cannot abide illogical arguments and will debate to a fault. I want everyone to be fair, just, logical and see all sides~ even if they don’t agree with them.

9. I have two (small, pathetic) tattoos. One done in my teen years with my best friends E. and K. and one done with a needle and Indian ink in a dorm room in college.

10. I was given a brand new Harley Davidson motorbike, plus helmet and leathers by one of my customers when I was a server (no strings attached, I swear!).

11. I have number obsessions. 519 has been following me around for years (and May 19th wound up being the day of my father-in-law’s funeral as well as the first day of my non-working life). 28 has always been significant ~ to the point that I had to sit my fairly-new boyfriend down on the eve of my 28th birthday and explain that I was worried this might be the year I would die (I know, morbid). Interestingly, ten days later, I was in the emergency room with my first case of anaphylactic shock. Even more interesting, I never, ever put that together until right this minute when I looked at my health records. That really was the beginning of the end of my health. My records say: 1977-78: chronic cough; 1987: tonsillectomy; 2001: anaphylaxsis… and then, every year, thereafter, there is something significant.

The Illness of Addiction

I have a research addiction. A knowledge addiction. A thoroughness addiction. I always have had. It’s manifested itself in various ways. Most recently, the countless hours I have poured into reading about people’s experiences with Lyrica before I’ve even popped a pill. But, I’ve always been this way. If I were traveling somewhere, I would read endlessly about the place I was going ~ from the cultural history to how to leave the airport to where to eat (after having read hundreds of reviews) to what attractions I wanted to see. I would look at maps for hours, so that when I arrived I had an idea of where I was and could orient myself to north, south, east and west. Before traveling, I would spend weeks comparing airlines and alternate routes. I would compare the various ways that I could use frequent flier miles and what sort of credit card bonuses I could get. I signed up for an American Express card purely to get the new card bonus and it worked ~ After adding a card for my Mom and my husband, I managed to get enough “miles” to get two free round-trip tickets across the country for a family reunion.

When I was in college, before I started a paper, I would read as much as possible on the subject to get a basic expertise, before I even knew what my thesis would be. But, I would do this to a fault ~ wasting weeks in the gathering-information stage and then pulling an all-nighter to churn out a paper that I never had time to proof read.

When I decided to go to graduate school, I researched colleges endlessly. To fulfill prerequisites, I took anatomy, physiology, organic chemistry and biochemistry courses, paying with my tips from waitressing. I volunteered at the University hospital, I paid dues to the American Psychological Association, I applied for scholarships, I gathered many reference letters and compiled binders of all information. I wanted to be everything, so I applied to multiple programs in Ireland and America. I applied for Master’s and Doctoral programs in different fields: two clinical psychology programs, forensic psychology, social and organisational psychology, dietetics (one that was research-based and one that was hands-on and clinical), two nursing schools and a program called The Existential-Phenomenological Therapeutic Psychology Master of Arts. Jesus! I got into every program but one, which began more endless research into the minute details of the programs, the job prospects after graduating, polling my friends, families, and customers to get advice…

In the end, I scrapped it all to become the manager of the restaurant where I worked. Revisiting my history now, it shocks me that I put so much time, energy and money into something and then just walked away. But I think I had invested so much that it overwhelmed me and the restaurant industry was a known ~ it was comfortable, I was good at it and it didn’t cost $50,000. My perfectionism kicked into high gear like never before. I wanted to prove myself so badly. I was willing to work any number of hours, any number of days in a row, for any amount of money. I made flash cards about the restaurant’s sales and finances, vendors, brands, inventory… I wanted to be ready for any questions my bosses might ask. I would literally study during the day at home and then work 10- or 12-hour shifts, leaving work at 3am. If I knew then what I know now! I thought I had to do it all. Nobody told me any different. I thought I had to know it all. I was expected to. I taught myself how to do my job; I called it my Master’s in Restaurant Management.

That job turned into a regional position and, eventually, I was in charge of the operations of seven restaurants as the COO of the company. For years, I was never home at night. For years, I was on the road visiting locations. And, when I finally transitioned to the corporate office, the anti was upped. Now we’re growing bigger, performance has to grow bigger, too. I was finally home at night, but I’d snarl at my husband if he suggested I stop answering emails while we were trying to watch a movie.

Until the bitter end, I compulsively studied the company to be prepared for any questions the bosses might have. For a long time, I knew every employee’s name in all three states. I reviewed costs, sales and schedules daily and made inquiries into anomalies. Why didn’t you have a host scheduled? Why were there only three people in the kitchen last night? Why was your labor so high on Saturday? Why did you clock out so early? Why are you ordering a different brand of oil? Why did you 86 salsa? Are you doing interviews? Why is your liquor cost so low? Why did the alarm go off last night? Have you completed your quarterly report? Why did you work 60 hours last week? I knew we had a different diameter straw and a thicker beverage napkin in our newest restaurant, two states away. I would work at rectifying those problems on the same day that I would have meetings with the PR company and interview general managers and discuss complaints with the executive chef and try to mediate HR controversies and taste the food in one of our restaurants, inspect the cleanliness of the bathrooms, talk to a server about dress code, review health insurance plans, listen to a manager’s frustrations, talk to lawyers about a guest that slipped, review and compare P&Ls, coordinate work on one of our build-outs (camera installation, chair order, lighting, employee training, liquor order, POS set up…), and talk to the owners about their next restaurant concept. I put together job position plans and, under “responsibilities”, mine said: “EVERYTHING”. This was true ~ my position had been formed under pressure, without much organisation, in a very quickly growing company, with incredibly high demands ~ but, it was also self-imposed. I wanted to be the best. I wanted to be indispensable. I wanted to be an understanding boss and a strong, knowledgeable leader. I wanted to be fair, but cut-throat. I wanted to be an exemplary employee who was never disloyal, money-grubbing, offended or overwhelmed. It was the most acute and most chronic addiction I’ve ever had. It was the hardest addiction to break and, in the end, the only thing that could stop me was a Myalgic Encephalomyeltis Intervention. After six months of trying to maintain that level of functioning, I gave up. I was getting sicker and sicker, crying in my car, worried I wouldn’t be able to make it home, shaking and sweating all night, unable to eat normally, unable to remember things, unable to get up stairs. And, once I left work, a new addiction began.

Which brings me to the reason I wanted to write this post. All day, every day, I read about ME/CFS. After I wake up, I lie in bed for over an hour, reading blogs and articles and books on my phone. I go to bed at 9pm, but spend three hours reading, lying on my side in the dark. I have countless books to read and hundreds of websites bookmarked. I scour medical studies and newspaper archives looking for treatment information, new theories, any tests I haven’t had done, research being conducted. I troll patient forums, looking for advice on drugs, asking what has helped them, taking my own poll of how many have recovered and where I stand on the Continuum of Evil. I have Nook books and real books and magazine subscriptions. I have emails with suggestions from my family and comments on this blog with advice from others with ME. I don’t watch tv without also reading my ipad (a gift from my former bosses). I don’t take a bath without reading an ME/CFS book. When I do my stretches, I listen to podcasts about chronic pain, mindfulness and meditation. I have underlined, highlighted, copied and pasted. I’ve emailed my doctors, corresponded with other patients, I have notes on pieces of paper, in the margins of books, in email drafts, and in apps on my ipad and a voice recorder on my phone. I beg my husband to help: “Please, there is so much to read, I need you to start helping me research. I don’t want to miss anything…” Like he wants to read about this shit when he has to live with it!

Last night, I lay in bed reading for three hours. After having a terrible day (IBS hell, headache, terrible back pain, aching hands, sore leg muscles, burning eyes, sore throat, low-grade fever, indescribable stiffness), I didn’t retire to darkness and peace to rest my brain and body… I read feverishly…addictively…as if there were a deadline…as if it would save my life. I get very distinct symptoms when I overdo things in this way. My eyesight goes haywire ~ blurry and jumpy, the words moving all over the page and what looks like Vaseline over my retinas. I get horrendous tinnitus, like the sound effects of someone’s brain after a bomb goes off in a movie. And, of course, my head throbs and my neck seizes up. Last night, my husband strongly suggested I stop reading and turn off the light. My hands were completely numb from all the blood draining out as I held my ipad up, my shoulders were tense and my eyes burned. “But, I need to figure out how to fix me“, I said. I did stop, though, until, a half hour after lying there trying to sleep, I grabbed my phone again and started reading blogs by other ME/CFS sufferers. And I did the same thing when I woke up at 5am. And I did the same thing when I woke up at 8am. And, as soon as I finish this unbelievably long post, I’ll probably go do it some more.

The irony is, I make myself worse trying to make myself better. Even now, writing this, I know I will pay dearly for how long I’ve been typing, but I’m compelled to finish. I need an intervention again. And I need an exorcism. I need Father Damien to stand over my bed and yell, “The Power of Health compels you!” while splattering me with fish oil. Maybe one day ME will stop possessing my body and I’ll move off the grid where there are no computers, mobile phones, electricity hums, florescent lights or Xbox games. Somewhere that’ll allow me to become addicted to cooking or walking or gardening or laughing. Or living.