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

Día de Muertos

1031141633_20141031181217331

I can’t remember what was on tv. I was listening casually while I sat writing Christmas cards on the other side of the room. I had five half-boxes left over from the years before and I was determined to have all of them written on time because I’m notoriously late with cards. I decided to start writing them on Halloween night because I could see our gate from the dining table and, when the kids arrived, I could dash outside with the bowl of chocolates before my dogs heard anything and went into cacophonous protection mode. I was hunched over, scribbling and, when I straightened, I felt this ripple go through my body. I’ll never forget that feeling. Like a ghost had walked through me. Like unearthly cold hands had reached inside my body and stroked downwards, from head to toes. A momentary shudder through my brain and nervous system that I never imagined would settle into each muscle and fiber, growing, mutating, eroding. I think of it now and wonder what was happening on a cellular level while I was nonchalantly scribbling notes.

I said, “Oh, I’ve been at this too long” and went to the armchair, curled up fetal, and fell asleep. An hour later, I awoke and knew something wasn’t right. Although it hadn’t really started yet, it felt more serious than a cold or flu. I felt unstable on a systemic level and thought it might turn into one of my syncopal episodes where I would collapse, pale and clammy, with a barely detectable blood pressure and pulse. I said to my husband, “You have to come to bed now. Something might happen and I won’t be able to make it down the stairs to get you.” Those were the days when we used to share a room. Before my illness became my bedfellow.

I spent the next four hours colder than I’ve ever been in my life. I was fully dressed, in bed with a hot water bottle, teeth chattering, shaking so violently, little moans were squeezed from my chest. I vividly remember the eternity it took me to move my hand out from under the duvet in an effort to cover one freezing ear. I thought if my hand left the relative warmth of the blankets, it might freeze solid and shatter into pieces. Oh shit, shit, shit. I’m sick. This is a doozy. I couldn’t ever remember having something like this, but it reminded me of my husband’s horrid battle with chicken pox. He was the sickest person I’d ever seen.

I drifted into sleep, curled in a tiny ball against the headboard, holding my knees, and, when I woke up, I was drenched. I had never experienced even slight night sweats and I couldn’t believe my body contained so much fluid. It was as if someone had poured a bucket of water on me. I could slap my stomach and make little splashes of sweat. And I was so relieved. I had assumed I would battle this virus for days, but the fever had broken after only a few hours and it would be a quick recovery. How could I imagine that I would continue to experience this almost every night for the next two years, losing lifeforce into my bed sheets, becoming weaker and weaker?

I spent the last of the night drifting in and out of fever dreams, waking up intermittently, sweaty and shaky. My husband snoozed peacefully beside me. At one point, my bowels cramped up and I wondered if it was just some atypical food poisoning event. In the morning, I decided I was on the mend, showered, got dressed and went to work. Because that’s what you do… So, that’s what I did. You’d have to be on your death bed to call in sick and, besides, I wanted to save my days off for Christmas.

*****

IMG_20141031_165543

I’ve thought about that night a lot over the last three years. The moment my immune system shifted permanently. My utter naïveté about what could happen to a body. Although I’d taken many premed classes and had quite a few health problems in my life, it really never occurred to me that I wasn’t unbreakable. Or, at least, if I broke, I assumed I’d be able to be fixed if I put in the work. I had been diagnosed with Graves Disease a few years earlier, told it would kill me without treatment, had radioiodine ablation on my thyroid and had to avoid people for two weeks. And, during all of this, I never took a day off of work. It also never crossed my mind to get a second opinion, talk to others with the same condition or change my eating and sleeping habits. I just popped the radioactive pill and got back to work. The same month, I was told I had reactivated EBV by a naturopath and was advised to cut back my work schedule from 55 hours a week to 20… Ha! I’m sure you can guess how that went. I never saw that doctor again. I was too busy.

I had never been intimately exposed to chronic illness, so I was completely ignorant to the toll it could take on a family. I imagined it would be hard, of course, but you can never understand without experiencing it. Everyone in my family is healthy, even my extended family. We have our demons, but they’re addictions, mental health problems, typical old age conditions. I had my first major bout of angeoedema when I was 23 and went into anaphylaxis for the first time when I was 28. My siblings are all in their 30s and 40s and haven’t had more than the occasional cold. My parents are in their 70s and both still work and are active and social.

I was a sick baby. People would famously stare at the itty bitty girl with the old man’s cough. If I’d understood what could happen to a body, if I’d been less in denial, if I’d been less concerned about proving my bullet-proof toughness, I might have looked back on my childhood and my chest infections, thyroid disease, vasovagal syncope and all the symptoms that turned out to be mast cell activation disorder and tried to make changes to protect myself. If I’d understood what can happen to a body, I might have tried to nurture what was obviously a sensitive system, armour myself against external assaults and preserve what was still working. I could have eaten food that didn’t come from a restaurant kitchen. I could have taken a vitamin once in a while and stopped drinking all of my water out of cheap plastic bottles. I could have made sleep a priority, quit smoking and drinking sooner and not married a job that turned a run-of-the-mill control freak into a spread-too-thin obsessive perfectionist, trying to do all things, everywhere, first and best.

It’s been exactly three years since M.E. shuddered through my body and I wonder if I’ll ever stop thinking about the life that I lost that day. I would take all of my previous health conditions over this one. It was like a death: of my career, of my strong body, of ignorant bliss, and of our future dreams. I think about the months leading up to it — the blatant warnings of a body in crisis that I chose to ignore. There was a nagging voice in my head that pushed me to make a will, living will and power of attorney the year prior, at the age of 36. That same voice made me insist on a quickie marriage in the back garden after my husband and I had been together 13 years. I wanted him to be able to speak for me if I happened to be incapacitated and have legal recourse and rights if I died. I did everything I needed to do for luck: old, new, borrowed, blue, coin in my shoe… We signed the papers on the patio table and, half way back to the kitchen to grab our lunch, I remembered the last thing needed to insure we didn’t jinx our new life: he carried me over our backdoor threshold. We didn’t tell anyone because we thought we’d have a proper ceremony with friends and family in the next year or two — maybe in Ireland or somewhere exotic on a beach. It was exciting to dream up plans for a wedding after so many years together. That was 44 days before my Halloween sickness.

My life feels like one of those Choose Your Own Adventure books that I adored as a kid.

Move back to Ireland after college, turn to page 63 or drive across America to Seattle, turn to page 82.

Work your way up the restaurant corporate ladder, turn to page 103 or go to grad school for nutrition and dietetics, turn to page 123.
 
Jump in the lake in Virginia, just once, for only a few minutes, turn to page 146 or stay dry and don’t catch whatever is going to land you in the ER, wipe out your gut flora and set your immune system up for failure, turn to page 160.
 

Run into Walgreens on the way home from work and get a flu shot, turn to page 184 or keep on driving and live the rest of your life never having heard of myalgic encephalomyelitis, turn to page Happily Ever After.

I know, I know. You want to say it might have happened anyway. But it wouldn’t have. And you want to say I’ve got to stop ruminating over the what ifs and focus on the present. But it’s the Day of the Dead, a time to remember the dear departed. So, today, three years after the specter came to stay, I will think about the woman I lost that hallowed eve.

HAPPY HALLOWEEN

I’ll leave you on a happy note. November 1st is not only the anniversary of the first day of my new life with chronic illness, it is also the anniversary of my first born son, Bowie, arriving in our lives. ^^

The Locations Effect*

Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on once in the last six months. This is something I am so reluctant to write about because it causes me such terror and grief. More for my husband than myself. If this climate, this city, this house is making me sick, I would move. I could make that decision today. When you lose your career and your social life, become housebound and fear death, there is nothing that seems too drastic or impossible. I’ve been too sick to go anywhere, see people, call family, read books, so what do I care if I have to leave the place I have called home for 19 years? Well, I do care, of course. I have been too immobilized by fear all this time to even consider it, let alone talk about it, let alone do it!

But, the most difficult part for me is that the hardship falls on my husband. He is the one that would have to sell things, pack things, clean things. He is the one with hard-won seasonal landscaping clients. He is the one that has poured his heart and soul into this home, tearing down walls and building bathrooms, replacing piping and electrical, building porches, patios, vegetable beds and fences, tearing out the furnace and installing under-floor heating, slugging through the crawlspace and sweating around the attic, replacing every shred of insulation that was infested by rats when we first moved in.

66d77599-e98c-4601-9299-9de9393b456a-1 (1)

He is the one that has spent 8 long years growing this garden oasis. Every single day that he doesn’t work — summer or winter — he has been in the garden doing whatever it is that people who love landscaping and plants do. The trees he has planted are glorious and you all know the fireworks show of flowers that I have documented here.

tree

He has done work-trade for plants and materials, used reclaimed stones and bricks to build paths and retaining walls… he has mulched and pruned and dug and mowed every day for 8 years and, until recently, I could never see the art that he knew would reveal itself. While I was confused by his choices, he could see the future colourful landscape and, one day, there it was… Ooohhh, that’s why you cut back that hedge so aggressively! Ooohh, all that green actually blooms eventually! That’s why you put that tree there! There was a reason for every brush stroke, only it took years to see the full painting. And we thought we’d have forever to enjoy it. My heart aches for him more than anything — that he might have to walk away from his slowly-created and lovingly-tended artwork.

0620141710

I know how lucky I am. I know I’m lucky to have a husband who takes care of me. I know I’m lucky to have had this home and to have had some savings. I know I’m lucky to have possessions in the first place to be able to sell. I could have started off from a much less stable position, without family support. But it doesn’t make it any easier. I don’t want to leave this house. My husband and I said our vows in the back garden. But, it is an inevitability because of loss of income. Leaving Seattle entirely is a different matter.

I have never taken Seattle for granted. Every year I am grateful that I don’t live with crushing heat and air conditioning… we don’t have freezing storms, frozen pipes, snow drifts, hurricanes or tornadoes…. don’t have to worry about mosquitoes, biting bugs, fire ants, huge spiders… I love all our doors and windows open 5 months a year and never having to think about insect repellent or ticks or West Nile virus…. I love the mountains and Puget Sound, the abundance of good food, farmers’ markets, clean water… I love the laidbackness and the passion of the people here… the music, art and theatre here… the politics, universities, the companies that make their homes here… I don’t want to live anywhere else in America…. But… what if?

seattle

Recently, Jen Brea, who is making the film Canary in a Coalmine, had some remission of her symptoms in Utah. I looked up today’s temperature and humidity in Salt Lake City and it is 88 degrees and 24% humidity. Here in Seattle, it is 61 degrees and 63%. Dublin, Ireland is about the same. My whole life I have lived in this climate and I need to test something different. I want to not only test a different house, but different air. If I could, I would travel to the Carribean or Europe, but the reality is, if I can be healthier in, say, Winnemucca Nevada, shouldn’t I go there? Can I separate living from all the things I thought equaled living? If I have no friends, no dogs, no home, no job, no possessions, but I’m not (as) sick, is it worth it? If I’m healthier, but I have no access to community because I’m living so remotely, can I be happy?

I can’t even begin to describe the lives of extreme mold avoiders. I have delved into that world for about six months now — watching videos, reading blogs and articles, listening to discussions in Facebook groups — it is harrowing and heartbreaking. No one can comprehend the pared-down, nomadic lives that people lead, leaving everything and everyone behind to travel the country looking for a safe place to sleep, their few possessions in garbage bags. Putting down shallow roots until something goes wrong — water intrusion, insecticide spraying, air quality changes — and then having to move on again to the next motel, campsite or friend’s driveway. I don’t know how they find the strength. But, my first step has to be getting out of here and testing how I do somewhere else. Part of me is hopeful and excited that it might make a difference and part of me thinks our little family will never survive such upheaval and I’ll somehow have to go it alone. As it stands now, I have to figure out where to go, when to go and who will take care of me until I can take care of myself. Gratitude pours from every fiber of my being for those of you that have offered to travel with me and help this quest: friends, siblings, parents and dear husband, I wouldn’t have a chance without you.

gardenriley

 

*The Locations Effect is the name of an online forum and Facebook group started by Lisa Petrison to report “on places where people have experienced improvement in chronic neuroimmune health conditions.” She is also executive director of Paradigm Change, a “not-for-profit organization with a primary goal of encouraging the exploration of the hypothesis that certain diseases involving the neurological and immune systems may be ones of toxicity.”

 

Emails from Ex-Employees

So, I just got a wonderful Facebook message (below in blue) from an ex-employee and it made me tear up in such a bittersweet way… after all this time, to get such a sweet email… It made my heart swell with gratitude and ache with desire to be in the working world again ~ interacting with people, mentoring, doing what I love.

Then it dawned on me that I have an old work email address and I had set it so employees’ emails filtered into a separate folder. I checked and found the other messages below from over the past year (names etc. edited out to protect privacy). I am blown away. I showed these to my husband and we both got weepy. I cared so deeply about every single person, in every restaurant. I wanted the General Managers to succeed and love their jobs. I miss the incredible high of opening a restaurant as part of a team and having those bonds that come from sharing 70-hour work weeks to get the job done. I miss the late-night, blurry-eyed laughter, the constant learning, the opportunity to train and teach. I miss contributing to the world! I wanted to share with you all how great some of the people were at my old company and how warm and fuzzy (and sniffily) I am feeling right now. 🙂

“Heeey!! I was JUST talking about you last night… I was asking B. how you were ?? I was also telling B. that I name drop your name a lot at work!! Haha. I’m always like, “if [Elizabeth Milo] was here, this crap wouldn’t be happening!!” Haha. You really were our rock!!! … I just never really had the chance to tell you how much of a positive influence you were to me:) I am forever grateful that I had the opportunity to have you as a mentor, friend, boss. So, thank you!!! Hope all is wonderful in your world:))”

“How are you?? … I’m not sure why I don’t see you around anymore but I hope all is well with you! Miss you lots. Again, hope all is well. Cheers! :)”

“Just doing invoices and you popped into my head. Weird, huh. I still measure myself to the “[Elizabeth],” standard you set. Thank you for keeping the bar high. I think of you often and appreciate all that you did to put me in a position to succeed. I know there was a time when you may have been my only fan and you stood tall for me despite your itty bitty self. It will always be appreciated. I hope to see that smiley face soon. Holler if you ever need me for anything. I owe you.”

“Hello my queen, … Really miss you and think of you often, hoping your energy is coming back to you. Some really delicious food by Chef P. just might help with some of that. Love you lots!”

“I am so glad that I was able to work with you as my boss for so long, I feel privileged that I got more time with you than most of the other GM’s 🙂 You are honestly one of the main if not the biggest reason I have stayed with this company for so long. I think it’s really important to have a boss that you can trust, get along with and who really knows your position so that they can guide you in the right direction and you always did that for me. I really appreciated that you had a bond with my staff as well as myself and I know it meant a lot to them as well. I know that you have gone to bat for me a time or two and you have always given me honest feedback. There are 3 bosses that have really truly made an impact on me in my working career of 15 years and you are one of them. I can’t say [things are] the same since you took sabbatical… I do, however, feel confident in my tenure and the skills that I have learned along the way. Thank you for being such an awesome boss, resource, confidant and friend. You definitely had a major hand in shaping this company and I thank you for believing in me…. I hope that you are able to relax and have some real “me time”, you deserve it.”

bugs beating heart

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.