Tag Archives: M.E./C.F.S.

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Tipping the Earth off its Axis

I’ve regressed again. For almost two weeks after the Worst Headache, I felt stronger and had more energy. My pedometer showed this many steps over the days:

1,500
1,800
2,000
2,050
2,300
2,450
2,900
2,950

And then…

2,450
2,300
2,200
1,400
1,200

That last one was yesterday. I didn’t do my stretches for the first time in ages. I haven’t walked laps of the house in the last two days. I’m hurting. I’m still having a hellish time with the CPAP. Not only at night when I have problems for all the previously-mentioned reasons, but during the day I’m dealing with IBS issues from the air that I swallow. They call it aerophagia and I’ve got it bad. Within minutes of putting the mask on my face, I have pains in my stomach from the trapped air and then, the next day, I have pains in my lower abdomen as it slowly, slowly moves downward.

I’m sleeping 6 or 7 sporadic hours and I can’t adequately articulate the stiffness in my body. Everything is inflamed: muscles, throat, lungs tight, eyes swollen alarmingly… A week ago, I said to my husband: “Maybe it’s gone…” It’s quite pathetic that I still think that way ~ that a few better days equal recovery. Yesterday, I couldn’t stop crying ~ not from my current state or the loss of my former life, but from the fear that I will get worse. There are so many people with ME that are so much more disabled than I am and I am terrified every minute of every day that I haven’t seen the worst of this. As I start to go backwards, I think, What if I keep sliding? What happens if I’m unable to take a shower or get to the bathroom or sit up or talk? What if I have to go to the hospital and I contract MRSA or sepsis? I know it sounds like I need anti-anxiety medication ~ and I probably do ~ but I refuse. Meds create more concerns for me. Is it a coincidence that I started to feel better during my wash-out period?

I realise that fear is debilitating and can create a self-fulfilling prophecy, so I work very hard moment-by-moment to be mindfully in the here and now. I truly do. It is my new career: You are alive. If you are breathing, there is more right with you than wrong with you. You will be okay, no matter what. You have support. I meditate into the fear and breathe out of it. I tell Mr. Fear that I understand his concern, but that he needs to take a seat and be quiet now because I have everything under control. But it is fucking hard. I’m not sure I DO have it under control. I think, actually, this disease is in control. When I feel this way… as symptoms intensify… I want to start screaming. I want to scream my fear as loud as I can. I want to wail and bite and punch and kick. If I unleashed it, I feel my fear could fill the whole world, ricochet off of mountains, travel up rivers, raze cities to the ground, create tsunamis and tectonic shifts and tip the earth off its axis.

I read somewhere that worrying is like praying for things you don’t want to happen. Yesterday, my massage therapist said, “Just keep saying: I am strong. I can do anything. I’ll get better.” So… deep breath. It’ll be slow, but I will get stronger, I will get better. I’ve just never been a very patient person.

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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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Yes, We Can.

By all accounts, Barack Obama is the first U.S. president to utter the phrase “chronic fatigue syndrome”. Thank you, America, for reelecting someone that cares.

Last month, the Chronic Fatigue Syndrome Advisory Committee meeting was held. Here are some details:

http://www.prnewswire.com/news-releases/president-obama-takes-interest-in-chronic-fatigue-syndrome-174345221.html

Here is the letter President Obama wrote to Courtney Miller, the woman that requested more funding for research:

http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf

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So, this is it.

Today I went for a follow up with the infectious disease doctor that I saw in May before I had to leave my job. I wanted to ask him about a few things that have been rattling around in my brain, namely: Could I have caught something from my dogs (through squirrels or birds or whatever)? Does he not think I have some sort of virus since I have a daily sore throat, hoarseness and low grade fever? What does he think about antivirals to treat Epstein-Barr virus (EBV) and/or cytomegalovirus (HCMV) and/or HHV6? I also ran Guillaine-Barre and bacterial endocarditis (SBE) past him and asked him about vaccines.

He is a wonderful, knowledgeable doctor and he took the time to explain things in detail to me, but I’ll sum it up by saying I am grasping at straws. He said, point blank: “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms. Patients can get better, but they never get back to where they were before being sick.” It was very final. It left me feeling empty. This is it. I’ve spent a year researching, reading, going to doctors, getting tests, asking anyone and everyone for help and advice and ideas… It’s time to move on. This is it. It’s long term and I need to move on with treating my symptoms and stop searching searching searching…

Regarding the other stuff, the ID doctor said they had ruled out active viruses and, in his opinion, mostly ruled out autoimmune problems, so, what is left is allergy — immune activation/allergic response. His experience (and what the medical community knows) is, a virus triggers CFS but then the virus is long gone and I’m left with the body’s ongoing response that causes the symptoms. So, antivirals will do no good and antibiotics definitely won’t. He is the 4th doctor to tell me there is no way they would throw broad-spectrum antibiotics at a patient without any clear target – especially in CFS patients where side effects can really cause hell. I have tested positive to past infection or exposure to EBV, which most of us will (and I had this test done years ago with the same result, so I know this didn’t cause me to get sick, although you can get reactivated EBV) and he said I am negative for HCMV, which many people aren’t.

He doesn’t think there is anything that the dogs could have given to me, I would be paralysed and hospitalized if I had Guillian-Barre and I’d be dead if I had SBE (he said, before antibiotics, SBE was one of the few infections that was 100% fatal. People might survive rabies, for example, but not endocarditis). Finally, he said my husband should get a flu shot ASAP because flu would be “very bad for you” and that I should never get any vaccines until I’m over 65 and then reassess. Wow.

I also had a follow-up with the Good Doctor. She is the one who will be helping me with symptom management going forward. Since I spent three weeks “washing out”, I am going to add in one thing at a time, very carefully. We’re starting with foods, moving to supplements, then we’ll tackle other things down the road, like heavy metal testing, hormone testing, Chinese herbs for Gu Syndrome, even medical marijuana… Anything!

I added back in rice last week and, yesterday, I added back eggs. I’m pretty sure I had a reaction to the egg, so I’m going to steer clear of them for now. I was feeling almost great (yes, I said great. Yesterday afternoon was really the best I’d felt in months) and, within half an hour of eating the egg, I had a raging headache. And then I had allergy-type symptoms in my nose: runny, stuffy, swelly etc. (although, that is still with me today and could just be me ~ or maybe I’m finally getting the cold that’s been threatening for a year.) Thursday, I add back dairy, then corn, then tomatoes, then legumes…other grains… If/when I want to start the Lyrica, I do it three days after the last add-in and three days before the next.

She also had the results of my stool sample (how long did that take? Three months?). No parasites. Inflammation not as bad as she thought it would be. Yeast levels not good and, even though I take a too-expensive probiotic every day, the good bacteria in my gut are nonexistent. She said “this is actually quite concerning”, so I have a new probiotic to order and, after that, she is going to start me on herbal supplements to combat the yeast. I’m staying on the ferrous gluconate (watch out, iron causes constipation – who knew?! I thought it was from coming off the pill) and, down the road, we’ll add magnesium and zinc and the other supplements.

Gratitude today is given to last week’s headache: You were SO ALL-CONSUMING AND PAINFUL that I never gave one thought to my first period in nine months.