Category Archives: My story

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Additional thoughts and gratitude…

When I asked my husband recently how he would describe me, the first word he said was, “fearless”. This is what I have to remember: who I was before this illness. I don’t want to scare anyone by being honest in this blog. There are moments when I am completely overwhelmed with fear and there are moments when I deeply grieve and I will write about those times… It is helping me to articulate my feelings here the way writing poetry once did. But, those moments are not constant- not even daily. Mostly, I am trying to get stronger, trying to allow joy and laughter in, trying to do some house chores and some correspondence and plenty of meditation breaks. In a lot of ways, I am grateful for my perfectionist tendencies and my addiction to thoroughness and research – it is a thirst for knowledge, a desire to do things as well as I can, to be as informed as possible. My goal is not to change that part of me, but to get to a place where I’m the old me in this new life. The me that is fearless and feels she can come through anything. I’ve just had the wind knocked out of my sails, that’s all. Had my bubble burst. Had my parade rained on. And those emotions only overflow when my physical symptoms get worse, so, with symptom-management, there should be emotional stability.

Every day, I honour the parts of my body that are working and feel good. I am very grateful that my body- my oldest friend- has been through so much and keeps on going. And I’m very grateful that my mind never stops- even though it keeps me up at night and runs a little rampant, it is still sharp and doing its job.

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Liebster Award?!

My cyber-buddy Reva from Living in Dreamland nominated me for a Liebster Award. Thanks, Reva! It’s doubly exciting since you’re not a family member and you live half-way around the world. The internet is pretty amazing that way. From what I understand, Liebster Awards are given to bloggers with fewer than 200 followers by other bloggers that think they deserve some recognition. I don’t think this is anything formal, it seems to be like an blog-chain letter. There are four steps a nominee takes to receive this award:

  1. List 11 things about yourself.
  2. Answer your nominator’s 11 questions.
  3. Choose up to 11 bloggers with fewer than 200 followers and ask them 11 of your own questions.
  4. Inform your nominees of their award nominations.

Numbers 3 and 4 will be difficult because I am new to the blogging world (do I remember people calling it the “blogosphere”?), so I’m not sure I’ve even read 11 blogs. Numbers 1 and 2 I can’t manage right now, but I’ll try later or tomorrow.

That cheered me up no end, Reva. It brought me out of my funk a bit. I’m grateful for the blogosphere. 🙂

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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.

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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Meditation as Medication

Meditation, from the day I started practicing, has been the single best thing for my well-being this year. It’s my charging station, my power cord. E., my best friend, said I was like a mobile phone with a crappy battery that needed to be charged all the time. That is exactly it: I’m okay… I’m okay… I’m fading… I’m gone. For months, my meditations were responses to the “gone” stage ~ when I crashed, they were necessary to recharge me. Now, they are built-in to each day ~ they are necessities to stop me from getting to the point that I’m gone. I meditate twice, if not three times, a day. This means going to my little meditation room (originally created to be my yoga room, which I hope to be able to do again one day), lying on my mat (a small folding futon), putting on my eye shades and listening to a CD, YouTube or podcast. I can do my own meditation silently in my head, but I much prefer to listen to someone guiding me. I find it so calming ~ that is, if I can find the right voice. There are some WACKOS on YouTube.

The downside of this is, of course, the cost. The best meditations I have found were on Amazon and, most of the time, they seem to be about $20 for an hour of talking. Meditation Oasis podcasts are free, but they’re all similar and quite short. There is no shortage of 5 to 20 minute meditations out there. Ideally, I’d like to find hour-long, good quality meditations ~ guided imagery or body scans or breath work or hypnosis practices. Lots of the time, I’m hoping to fall asleep. I’ll listen for half an hour and then doze off, but I always wake up when the meditation ends, so longer is better for me. The other downside is repetition ~ I have listened to my five CDs hundreds of times. When you know a meditation by heart, you tend not to pay attention as closely as you once did.

Interestingly, though, each time I do guided imagery, something new always bubbles up in my brain. And it’s always from my past. My therapist says I am a future thinker: the what if thoughts. What if my husband gets sick? What if I can never work again? What if something happens to a loved one abroad and I need to get on a plane? What if I have an allergic reaction to Lyrica? What if I lose health insurance? What if there’s an earthquake? What if I get the flu? What if I can’t get disability? What if we can’t pay our mortgage? What if I’m like this forever? But, I don’t think about/ talk about/ dwell on my past. However, that doesn’t stop it from playing out like little movies in my meditations and I sometimes find myself lying peacefully with tears running from behind my eye shade into my ears.

There is one guided imagery phone app that I listen to which has me walk down ten steps to a landing with two doors. When I open one of the doors, there is always something new behind it. Last week, I opened the door onto a field in Tiglin, Ireland where I went with E. when we were kids. How old were we? 14? 15? I can smell the air and see the trees and remember the feeling of freedom and excitement. It was before health problems and before the real insecurities of teenage years. We were out of the city, alone, responsible. We were giddy, we were growing up.
Another day, I opened the door into a cabin where I stayed with my two brothers. It was a skiing trip, I was a little older. We drank some beers and blared Janis Joplin and sang along to every song. My brother, who is seven years older, said, “I didn’t know you knew Janis” and I felt jubilant ~ as if I was finally an accepted member of the cool kids instead of the annoying, bratty baby sister. I think they laughed at one of my jokes; I remember pure joy.
Another day, the door opened on a stream. I ran down a path and jumped from rock to rock and, when I saw Dash, I realised I was at the creek next to my Dad’s old house. Dash was our dog from when I was five to the age of twenty. We ran along that creek all the time. Dash didn’t have to be on a leash, he would follow me up and down the rocks and, when I sat down in the sun, he would, too. My constant companion, my protector. A few weeks ago, Dash would have turned 238 ~ in dog years.

Whenever those meditations tell me to imagine a time when I felt happy or go to a room where I feel safe and secure, surrounded by those I love, there are always dogs. My imagined room has all the dogs from my whole life, protecting me, playing with me, making me laugh, making me forget all else. My gratitude today goes to Dash, Floppy, Toby, Joxer, Bowie, and Riley. And to mindfulness and meditation, which keep my battery charged and keep me (mostly) in the here and now.