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.

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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.

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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.

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SLEEP: Chief Nourisher In Life’s Feast.

Sleep has always been hard for me. My very first memory is being in my bed at the age of five, cuddling with my mother, while we were surrounded by a chilly, damp fog. The doctors had told my parents I needed a cold humidifier to treat my asthma, which now seems like the last thing I’d want since I’m most comfortable in a warm, dry room.

I never wanted to go to sleep, even as a kid. I remember my brother, who was 12 at the time, would voluntarily put himself to bed at an appropriate time while I, an 8 year old, would fight tooth and nail to stay up late. It wasn’t about watching TV — our only television was in my mother’s bedroom and Irish channels all went off the air late at night, anyway. It wasn’t about being scared, either (that came later). It was about enjoying the witching hour; wanting to listen to more music, read more books, write more poems…

A few years later, while visiting my father in America, I discovered MTV. It was one of my first addictions. I remember the physical excitement I had waiting for the next video to start. A breathless anticipation. It was like a gambler who just keeps putting the money down, hoping the next hand will be a winner. If I didn’t know the band, I couldn’t tear myself away because what if the next video is a good one?? Night after night, I would stay awake until the sun came up. It was my secret life: the thrill of not living a normal routine, of being alone and able to do anything. There was always a disappointment when the windows grew lighter. My father got up very early for work and I was always scared that he would catch me, black circles and spiral-eyed, glued to the television at 6 in the morning. When I heard his footsteps upstairs in the morning, I would silently slink up to my bedroom and go to sleep. A few times, I didn’t hear him until he came downstairs and, quick as a ninja, I would have the TV off and lie down in a convincing position to make it look like I’d fallen asleep on the couch. My brother, as usual, had gone to bed at a decent hour, even during the summer holidays.

One time I woke up to a sound in my bedroom: a zippery repetitive sound, and, when I opened my eyes, I saw the glow of a flame under a ghoul’s face. Then the flame went out and I heard the zipper sound again and the flame came back. It was a man at the foot of my bed, holding a cigarette lighter, lighting it over and over in the dark. It scared the shit out of me. Those seconds, while my sleep-slogged brain tried to wrap itself around this scene and comprehend what was happening, seemed very long …and have never left me. It turned out, it was a drunk friend of my cousin looking for the toilet. He’d somehow managed to find his way down the stairs to the basement and through two closed doors into my pitch-black room.

I don’t know if my nightmares started before or after that. They weren’t chronic and didn’t concern me too much, but, when they happened, it was memorable. I would wake up screaming or yelling or arguing. I would sleep walk and sleep talk. They were mostly obvious stress nightmares: dreaming I’d fail exams when I had exams coming up, dreaming I couldn’t get to all the tables and I was the only server in the restaurant, that sort of thing.

At some stage, I began sleeping very lightly. It was more or less a conscious decision. We had a few break-ins in my house and I conditioned myself to be on high alert, even while I slept. I wanted to know if anyone came in my room. I would awaken to any odd sound, even faint, and, once I became a self-conscious teenager, I could never sleep properly at friends’ houses or on planes or anywhere visible because I didn’t want to be seen drooling and slack-jawed.

Once I got dogs, my sleep became even lighter. I wanted to be able to hear my kids in distress since my husband sleeps through everything. In the first few years of their lives, there was a lot of needing to pee in the night and puking in the early mornings and injuries that required nocturnal consoling. And I can’t discount the sleep interruptions caused by 185 pounds of snoring husband and 175 pounds of scratching, licking, readjusting dog in the bed beside me.

Just as I can count on one had the memorable, incredible meals in my life, there are a few memorable, incredible sleeps of my life. One was in Germany, the first night I was there as an exchange student. The room was silent and had heavy metal shades on the outside of the window that you lowered with a crank on the inside. The door was solid and soundproof. It was like being shut into a dark, silent prison cell and I slept like I never remember sleeping before. Of course, for days afterwards, the family with whom I was living made fun of how late I got up, so I never again during my stay let myself sink that deeply asleep.

Another time, I was visiting my oldest brother in Tennessee. I had just arrived from Ireland and he put me in the spare room and said, “Rack hard, Elizabeth.” That was a term they used in the Air Force, I guess. There was something about his permission — his COMMAND — to sleep long and hard and, also, the knowledge that my two family members that were there — my brother and mother — routinely slept 10+ hours, so they wouldn’t judge, that allowed me to let go into blissful slumber. Their plush bed probably helped, too.

As an adult, working in bars and restaurants, I never, ever went to sleep before 3am and regularly stayed up until daylight. These were the heady years of booze and fun. I could drink and talk all night. One night when I had just met my husband, we were staying up late, listening to music and talking — sharing really important stuff like you do with a new love — and he fell asleep mid-conversation. I was aghast. How rude! And who wants to stop the revelry before sun-up (or before the wine runs out)? What a weirdo. But, it’s one of the reasons he will never have M.E. He has an off-switch. Another reason is, he’s not a Type A perfectionist the way I am. I was always pretty obsessive about succeeding, but, once I quit drinking and became a full-blown workaholic, sleep got worse. I worked late, wound down from work even later and got up early to do, go, be… In between, I had responsibility-laden, over-achiever stress dreams.

But nothing… none of it compared to what happened when I got sick with M.E. Night terrors are very different to nightmares. Not sleeping much when you’re healthy doesn’t come close to a the lack of sleep caused by a broken immune system and a poisoned body. You’ve heard about it ad nauseum in this blog, so I won’t bore you more. All of this is just to set the stage to explain the incomparable joy of the last few months. I’ve been sleeping. I’ve been closing my eyes, falling asleep within minutes and not having conscious thought again for 7 hours, sometimes more. I haven’t wanted to shout it from the blog rooftops for fear of jinxing myself, but this is big. This is healing. This feels like what a normal person must experience. I’m still suffering from the lack of circulation, pain and nightmares, but it’s SO MUCH BETTER. I still don’t feel recovered in the mornings, but there’s SO MUCH HOPE. Every time I look at the clock and see 9am or later and my body is dry and soft and the last thing I remember is turning out the light the night before — no waking panting, heart-hammering, no drenching, trembling sweats, no full-body muscle spasms that twist my neck and crack my jaw — I break out in a shit-eating grin. Pure celebratory joy. A feeling I want to bottle and carry around with me. A swig here and there of rested jubilance.

My top tips for making some headway in this area: Feeling safe in your home, sleeping alone, never drinking so much before bed that you’ll have to get up to go to the loo in the night, balancing hormones (really, this may all be a consequence of topical progesterone and pregnenolone), and good ear plugs (life changing).

Also, when you have felt that you truly might die, every day afterwards is gravy. Going to bed excited that you got another day and you get another one tomorrow — but not so excited that your nervous system is jazzed up — that’s the key.

Sleep that knits up the ravell’d sleave of care,
The death of each day’s life, sore labour’s bath,
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.

It’s Cinco de Mayo and I’m not stressed out.

The biggest day of the year for the restaurant company for which I used to work is Cinco de Mayo. When I was a server, it was a gruelling 12-hour, non-stop day during which I would take about 50 times the number of steps I do now in a 24-hour period. The restaurant was new, busy and understaffed. It was exhausting and exhilarating, great money and unforgettable camaraderie. When I was a general manager, it was more stressful and the tips were replaced by a sense of accomplishment. As a regional manager, the amount of work rivaled that of a new restaurant opening. I tried to be the conductor and the first violin at once, as well as the advertising, PR and marketing director. We planned for months in advance: budgets, entertainment, products, staffing… Once I was the COO, things were easier. I oversaw the managers’ work and didn’t have to be there late into the night. Today is the first May 5th since 2003 that I haven’t been focused on festivities and maximizing sales. Ten years. Although, I desperately miss working, I will celebrate this relaxing May Sunday as a silver lining to my situation.

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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.