Tag Archives: symptoms

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New Beginnings

68 weeks sick.
45 weeks gluten-free.
40 weeks unemployed.
26 weeks on autoimmune diet + supplements.
23 weeks housebound.

This is my update.

For those of you just joining us, six months ago, my doctor put me on a anti-inflammatory diet that is supposedly good for autoimmune conditions.

These are the rules:

  • No gluten (that is, no pasta, no muffins, no pizza)
  • No grains (that is, no gluten-free bread or baked products, no rice, no popcorn, no tortillas)
  • No dairy (that is, no yogurt, no ice cream, no cheese)
  • No legumes (that is, no peanut butter, no hummus, no beans)
  • No nightshades (that is, no red pasta sauce, no mashed spuds, no hot sauce)
  • No sugar (yeah, right)
  • Only lean meats and fish

I have been horrifically strict (as in, I won’t eat soup with corn starch in it or the soy yogurts made with rice starch). However, I have allowed myself oats (must have granola for breakfast) and, although I’ll stay away from, say, foie gras, I am eating beef. A lot. Sugar, also, is difficult. I’ve cut down drastically, but I still eat dark chocolate every day and sweeten my granola with honey.

I feel no different from this diet. Besides the fact that I have no joy in food anymore. In my other life, I would have had fun researching recipes and learning to cook with new and interesting ingredients, but I don’t have the energy. I couldn’t stand in the kitchen long enough to cook a meal. So we rely on a lot of salads, stews, roast chicken with veg etc. And I eat more nuts than anyone on the planet and buckets of fruit. Ick.

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My Food Shelf

The other day my husband had a long chat with one of his old friends. Afterwards, he said, “I caught him up on how you are doing.” I scoffed: “So, you told him nothing’s changed?” He said, “Well, no… you’re worse.”

It took me back a bit… Yes, of course I am worse. I can’t do half what I could last summer ~ no dog park, no grocery shopping, no lunches with friends. I am only driving myself to places that are very close, I never have more than one phone conversation a day, I can’t walk as well as I could six months ago ~ my body has degenerated from so little movement. I’m in MUCH more pain ~ my spine, hips and muscles. The fibromyalgia-type pain only started in earnest after I left my job. I look worse. The lack of sun and fresh air have taken a toll on me. My sleep problems and emotional turmoil have aged me.

BUT, although I’m worse, I’m better, too. My sickly, shaky, evil nightly sweats are gone (except for the odd night) and that completely changes my life. I will never be able to adequately put into words what those malarial nights were like. Sleeping with the enemy. Also, my “nightly flu” has gotten better ~ the sudden increase in chills, aches, sore throat at around 6pm. There were so many evenings I would say, Okay, this time I’m really coming down with something. I still have those symptoms, but they are muted. The headaches eased up. Did you watch Mind The Abyss? After watching it, my husband said, “When the headaches came on…the man’s head held in his hands… that’s what struck me the most.” The severity of my headaches and the accompanying noise and light sensitivity altered my life more than perhaps any other symptom. The constant chills are gone… The ice in my bones, shallow breathing, tense muscles, uncontrollable shivers… This time last year, I COULD. NOT. GET. WARM. I rarely progress to the point of “bricked” anymore: where I hit a wall and I am grey, ashen, can’t move, can’t speak, weeping in a ball on the couch. My sleep is still a major concern ~ constant waking and endless adjusting from pain ~ but I get 8+ hours a night and that is a huge step forward. And, finally, my outlook is better. Don’t get me wrong, I mourn A LOT and feel alone and desperately sad (mostly when my symptoms increase), but, I laugh now and there is a semblance of acceptance. There was a point in time when I couldn’t smile. I tried, but they just weren’t there. It wasn’t depression, it was from pain. Pain sucks smiles away. And I had the knowledge that below the pain was the flu and below that was exhaustion and fear and a life I wouldn’t recognise.

I’m trying to forget about 70% of what I know about ME/CFS and follow my heart. So, yesterday, I threw the ball for the dogs and scooped the poop in the yard. Afterwards, I had a much harder time moving, but I thought, “Maybe it’s not a CRASH. Maybe it’s just because your muscles aren’t used to it. Maybe you’ll be okay. Tomorrow is a new beginning.” You never know what someone is going to say that will stick in your brain and help you through the days. My friend Z. suggested I think of new beginnings. Obviously this makes sense in the grand scheme of this new alien life. It’ll never be what it was and I have to eventually look at it as a new beginning and stop fighting it… But, I’m not quite there yet. I’m not ready to embrace this mortal coil as a new, permanent realty. However, every day can hold hope as a new beginning. Every hour. It’s kept me going through a bad week. After this bath, maybe I’ll feel better, maybe a new beginning. After this meditation, a new beginning. This moment, a new beginning.

Today I am grateful for all that is better and new hope for the future.

Launching my wish for the future, with husband and friends Z., J. and D. Thanksgiving, 2010.

Launching lanterns with our wishes for the future, with husband and friends Z., J. and D. I wrote, “I wish that we have long, healthy, happy lives.” My husband wrote, “What she said.” Thanksgiving, 2010.

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Girl, Interrupted

Last Sunday, my husband woke up, gave both dogs baths, hoovered the downstairs of the house, tidied the kitchen, emptied the dishwasher, took the dogs to the park, went to the grocery store, came home and hoovered the upstairs of the house, emptied all the garbage bins, put the cover on the duvet and made the bed look nice and inviting, washed and replaced the unwieldy dog bed covers, scooped the dog poop in the yard, cooked dinner and also cooked soup for me to eat for lunch the next day, took out the rubbish and recycling, loaded the dishwasher and I’m sure there are many things I didn’t notice him do… I washed my cpap parts, soaked in an epsom salt bath for 15 minutes and did a few minutes of gentle stretches. That was the extent of my activity. Other than that, I sat or lay in different rooms of the house.

I spend an inordinate amount of time lying down in dark rooms. Meditating, resting, sleeping, trying to sleep, reading, thinking, crying. Somewhere along the line, I lost the ability to walk laps around my house, so I haven’t been outside in weeks ~ except to walk to the car for doctors’ appointments. I long to be outside. I want to breathe in great gasps of cool outdoor air. I want to feel my heart pumping and my muscles contracting. I want to see my dogs run and be able to dance along with them and not be crippled physically or crippled by the fear of movement. I imagine my brain functions like any other negative reinforcement situation. If you are bit badly by a dog, you may avoid dogs and be seized by fear when you see one. When I move a lot, talk a lot, cry a lot, react to a pill I take or don’t sleep well, I am overcome with foreboding about the backwards tumble that lies ahead. It extends to smaller things, too. I forgot my sunglasses yesterday for the drive to the doctor and I wondered if the light would take its toll on me, not only in the moment, but today. I had to move quickly to catch the phone when my Mother called the other day and I became annoyed that I hadn’t stopped myself… and then became afraid that the 3 seconds of faster movement and the 3 minutes of annoyance would worsen my symptoms. I’m trying to do less so I don’t continue to slip backwards, but not do less so I don’t decondition anymore in my body and mind. It’s a hard line to walk.

Last month, we were watching The Walking Dead (spoiler alert: if you are watching but aren’t caught up). There is a scene where the father runs across a large field carrying his dying son who is a not-so-small 9 or 10 year-old. I can’t stop thinking about that scene. Not because the kid got shot – (spoiler alert) I knew he’d survive – but because sometimes we will have to exert energy. There WILL be trauma in our lives and, somehow, we will have to weather it. I watched that scene, thinking, I would give anything in the world to know that I could run flat-out across a field, carrying a child and that I would be okay. That I wouldn’t then be confined to my bed for the next decade. I would give anything to know that I could handle an emergency and emotional upheaval without regressing into worse shape for who knows how long. At the bare minimum, I would give anything to simply be able to run across a field, minus the bleeding child and the chasing zombies.

Yesterday I was watching The Bachelor (spoiler alert: in case you thought I was remotely cool) and the contestants were canoeing and riding horses. This was rough to watch. In my youth, I used to do both of these activities a lot. I loved them and felt confident in my skills (at least with canoeing. I made a number of trips through the Boundary Waters in Northern Minnesota, isolated, carrying food bags, portaging from lake to lake. E and I took a trip together when we were, what? 16? That was ballsy. I don’t know if I would let my child disappear into the wilderness and hope that she and her friend would appear on a different lake a week later. But it was amazing and, now more than ever, I am so grateful for those memories). I watched those Bachelor contestants sit passively on top of the dozy, plodding ponies and then paddle over and over again into the shrubbery on either side of the river and I wanted to scream, AAaahhh! Give me that fucking paddle! Let me sit in the back of the canoe and steer for the next 5 hours, loving the ache in my shoulder, the strength of my biceps, the pull in my triceps… the sound of the canoe cutting through water and peace of surrounding nature. Let me sit on that horse! I can smell his coat and the saddle leather. I can feel the power beneath me and I just want to tap him with my heels and hold myself up with strong thighs and reliable calves, lean forward with no back pain and gallop. Or, at least, canter. The best feeling.

horse riding

Television and books ~ even watching my husband doing chores ~ are constant reminders of the things I can’t do and cause an endless roller coaster of emotions. Desire, jealousy, despair… and then gratitude for what I still have. I got up today after another bad night with no sleep and texted my friends that I felt like a walking corpse. The Walking Dead. But I don’t really walk much. And, I’m not dead, dammit. So, maybe my life right now is a bit Requiem For A Dream or Vertigo or Groundhog Day… But, maybe one day it’ll be Run Lola Run or Dances With Wolves… Or, simply, wonderfully Staying Alive.

oregon coast

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Update

My friend asked why she hadn’t heard from Elizabeth in a while, so I thought I’d give a quick update. The good news is, my sleep continues to improve. It is a goddamn miracle. I cannot tell you how poor my sleep has been my whole life and this last year was like someone was intentionally torturing me. I was in bed more than ever, but sleeping less than ever. Unfortunately, I was awake in bed alone, for those of you that might think “in bed but not sleeping” is some euphemism for sex. As you may remember, I have posted sleep graphs from my Zeo that show nights with either huge chucks of “awake” through the night or I wake up over and over again, interrupting the regular, beautiful sleep cycle. The sleep study said my brain woke up 49 times an hour. Maybe, if I got hooked up to all those sensors again, I would still have waking brain activity of which I’m not aware, but I doubt it would be bad. For weeks after my last post about sleep, I was getting about 7 1/2 to 7 3/4 hours a night. The last 5 nights I have slept between 8 and 9 hours each night. But the best part is, the last few nights I have only woken up a few times ~ 2 or 3. My god, that’s bliss. Imagine turning off the light and, 9 1/2 hours later, you’ve had 9 hours sleep. WhawhAAT? This was last night:

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I still don’t know what changed besides drinking tart cherry juice, so, although it has a high sugar content, I will continue to drink it each night with dinner. My real theory, though, is that my sleep is a product of the same thing that has caused me not to write a blog in a while: a quieter mind. When my brain won’t turn off, I want to write everything I think and I never feel peaceful enough to drift into slumber. So, maybe it’s my daily meditation or maybe I’m just tired of the fight, but this is life now and I think I’ve found a tiny bit of quiet. No doctor is going to make a miraculous discovery and this will not be a quick process. I have to rest. Full stop.

Unfortunately, the sleep has not helped my waking symptoms. I’ve actually been feeling worse this past week than I have since December 26th. My pain, achiness and stiffness has increased and my energy has declined. After having virtually no headache for about a week, it came back a few days ago. Wow, does that make a difference in my mood. I can still feel pretty upbeat and functional with all the other symptoms, but the headache decimates me, renders me silent and grimacing. “Decimate” technically means only destroying a tenth of something, right? What would be, say, half of something? Headaches quintimate me? Or septimate me? Would that be destroying 70% of me? Much better.

My Mom told me something that has kept me going lately. In one of the hundreds of articles I sent her, she read that if you are without pain for even one day, there is hope that you can be permanently pain-free. I do not hold out hope for pain-free, but that little gem of information has made me think that there could come a time when there are more pain-free days than crippled-and-crying days.

I’ll leave you all with good news. My period came and went and I didn’t have to take a single painkiller. It wasn’t painless by any means, but it was tolerable. I don’t know why. Maybe it’s the new diet, maybe it’s all the supplements. Also, I am seeing a new doctor this week. The universe sort of conspired to introduce me to him, so I’m heeding the hint and trying one. more. specialist. I’ll let you know how it goes.

Gratitude: For painless days that allow me to laugh and for good nights’ sleep.

irish proverb

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Gone Viral

I’m sneezing, I’m short of breath, my nose won’t stop running, my throat is sore, my muscles ache, I’m exhausted, I have a headache, my temperature is 99.7 degrees, my face is flushed but my feet are numb, I’m pasty, and my husband says I’m “more purpley-eyed” than usual. But I don’t think I have come down with a cold, flu or new virus. Such is the life of someone with ME/CFS. That doesn’t mean I’m not scared of catching something. I don’t have an attitude of “Why would it matter if I caught a cold? I’d just feel the same.” Instead, I’m terrified all day every day of coming down with anything that could pile hellish symptoms on top of hellish symptoms. I’m terrified of how it will feel and what complications I might have (asthma, bronchitis, pneumonia) and whether it will set me way, way back in my recovery. The current media hype doesn’t help. It’s all the news is talking about! Worst flu season in decades. It’s now at epidemic levels. Virulent strains that make you sicker and last longer than the usual flu.

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I think, there’s a flu epidemic every year, relax. But it actually seems true that this season is worst than most. If you read the comments after the NY Times articles, there do seem to be many healthcare workers saying things like, “I’ve been an ER nurse for 27 years and have never seen so many patients so sick with the flu.” There is a silver lining to my current situation: I don’t have to be out in the infectious world. Of course, that doesn’t stop me from worrying. This is the first year I haven’t had a flu shot and this is the first year I have known that recovery doesn’t always happen. I have my own personal form of PTSD. I’ve alluded to it, but it’s not something I’ve wanted to get into in depth in this blog because I guess there is some level of shame attached… I don’t want judgement. I don’t want eye rolling. I don’t want anyone to say relax or don’t worry or it’ll be okay. I don’t want anyone to try to give me advice on how not to have these thoughts. I don’t want anyone to insinuate I have to get over it/ get medicated/ get help. Most of all, I don’t want anyone to think I’m a hypochondriac. Because I’m not at all. Hypochondria is very different from fear of getting sicker. If anything, I have a tendency to ignore symptoms for too long ~ from insomnia to thyroid problems to my neck injury to the more serious stuff. Now I know: recovery doesn’t always happen.

Before New Year’s Day 2012, I never really gave viruses and infectious diseases a second thought. They never concerned me. I felt pretty indestructible, impenetrable, durable… I was able to overcome anything. When my husband was horribly sick with chicken pox, it never occurred to me not to tend to him, not to touch him, not to go to the doctor with him (quick aside: my husband is 12 years older than I and looked particularly haggard after suffering for days with the pox. I was wearing yoga pants, a hoodie and a baseball cap. The doctor turned to me and said, “Would you like to stay in the room with your father?” I looked at my husband. “Is it okay if I stay, Daddy?” I found this hilarious for ages until ME aged me considerably in the past year. Comeuppance).

One of the sickest people I’ve ever encountered was sitting beside me on a plane. I thought he might die from whatever horrible illness had him coughing, spluttering and moaning ~ but it never occurred to me to change seats or even point out to a flight attendant that perhaps he was too sick to fly.

I worked in restaurants my whole life. In the restaurant biz, you only take a sick day if you can get your shift covered. And that’s a difficult thing to do. So, there are always sick employees, there are obviously going to be sick customers, I am handling a lot of cash, I might lick my finger as I count out your change. I am handling your glasses, plates and cutlery and I don’t get a chance to wash my hands as often as I should. We are all stuck indoors together and, for most of my restaurant years, the rooms were filled with cigarette smoke. It never occurred to me to be worried about catching something. If I got a cold, I worked through it. I got bronchitis regularly and would work through it. I was once in the toilet at work sniffing, snuffling, trying to deal with a nasal mucus crisis and one of my coworkers thought I was snorting cocaine. Yeah, right! Nope, just trying to avoid snot falling on my customers while I take their orders.

In college, I remember going to the campus clinic because my chest infection wasn’t going away. The lowest number on the lung capacity chart was for a 4’6″ tall 80-year old woman. My lung capacity was below that. Off the chart in a bad way. I’ll never forget the doctor looking askance and saying emphatically, “You walked across campus just now? You have asthma. You have to take it seriously.” I still don’t believe I have asthma.

lung capacity

So, I’ve had a lot of colds in my life and had hospital stays for weird things like suspected meningitis, lumber puncture headache and anaphylactic shock, but they never created any sort of ongoing anxiety or trepidation. Even after three or four trips to the ER for vasovagal syncope on the first day of my period, I still didn’t really worry about it. It wasn’t until one episode when my blood pressure and pulse fell very low and stayed very low that I started to get a sense of foreboding when my period was due. I would tell one of my friends at work what to do if I collapsed. If it were the weekend, I would be sure to shower “in case I have to go to the hospital” and I started to be cognizant of what outfit I was wearing for Aunt Flo’s impending visit (ever since the EMTs had to help me on the bathroom floor while I was wearing red underwear with hearts and a 15-year old threadbare tshirt that was literally hanging off the neck band in tatters. It was incredibly comfortable to sleep in, but I’m sure, as they entered the bathroom, they were wondering whether I was on the floor from a physical assault… or perhaps a tiger attack).

I started to get more cautious in 2011. I hadn’t come down with ME/CFS yet, but something was going on. I was having dizzy spells, but I chalked it up to low blood pressure. I was having bad neck problems that were giving me a hard(er) time sleeping. I had a collapsy episode in Ireland that had nothing to do with my period. My tongue swelled up for days, which hadn’t happened in a decade and was not alleviated by antihistamines. I had bronchitis and then a bad diarrheal sickness. I was under constant stress at work and it was taking a heavy toll. I became aware of sick people around me, not wanting to sit beside someone who was coughing, knowing ~ almost subconsciously ~ that my immune system wasn’t quite up for it. But I continued to push myself. Then I got the flu shot and the rest is history.

Which brings me to the point of this post. In those first few weeks of 2012, I developed what I affectionately call my Brain Virus because it happened so quickly and consumed my thoughts so thoroughly (let’s hope I don’t actually ever get a brain virus like the one I saw on Monsters Inside Me last night). I’d been diagnosed with malaria and told that I needed long-term drugs that could be dangerous to a sensitive system… but then they left me in limbo for two weeks while waiting for a second confirmatory blood test to come back. I was so sick and so spooked by my symptoms. I spent those two weeks in abject fear, ruminating about the anti-malarial drugs and thinking, What if it’s NOT malaria? What the hell is wrong with me? During those few weeks, the Brain Virus ran rampant and suddenly I was scared of anything that might make me feel worse. Flu, colds, food poisoning, MRSA, flesh-eating bacteria etc. I didn’t become a germaphobe ~ I didn’t start cleaning obsessively or stop rolling around on the floor with my dogs or anything. In fact, I stopped using antibacterial soaps to try to make my immune system more robust. But my brain was talking a foreign language, sounding warning bells. Mr. Fear was on high alert ~ he was going to protect me, come hell or high water. I imagined him sitting on top of my head with an arsenal of weapons, peering frantically through night-vision glasses and binoculars, whispering warnings in my ear: Watch that cut on your finger that isn’t healing! Wash the outside of that avocado in case the knife carries the E. coli into the center! Hubby is sneezing, don’t kiss him goodnight! Having never thought twice about being in enclosed spaces with people, I started to sit in the far corners during management meetings at work. I watched a mother teach her son how to push the hospital elevator button with his elbow and I thought, why didn’t that ever occur to me?  And then quickly on the heels of that I thought, Jesus, hospitals are where sick people are! I know: duh. But I’d always thought of hospitals as places to make me better, not get me sick. So, I started wearing masks.

It’s not that bad anymore. Mainly because I have done a lot of meditation and worked hard on stopping the circular thoughts. Mr. Fear is an educated and protective friend when he’s not panicked, so I tell him: I hear you, dude, but I’m okay. There is no point in being worried until it actually happens. And even then, worrying won’t help heal me. It’s been almost one and a half years since I was sick with something besides ME/CFS. Maybe it’s because I haven’t been working and haven’t been out much. Or maybe it’s because my immune system is activated and attacking everything that comes near me ~ including me.

Another silver lining in this situation: It has quashed my old fears. My fear of flying has vanished. I am now afraid of breathing the air in a plane, but I’m not afraid of a plane crash at all. I’d welcome the chance to get on a plane. And I’d sleep in a tank of spiders for a month if I could feel unbreakable again.

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My Second Visit To The Chronic Fatigue Clinic

I didn't have to wait too long for the doctor this time, but still thought this was hilarious.

I didn’t have to wait too long for the doctor this time, but still thought this was hilarious.

The single best thing the chronic fatigue specialist said was, “We’ve been puzzling over your case for a while.” I said, “Well, at least that makes more than one of us.”

Somehow, it meant more than anything else he could have said ~ except, perhaps, “we have a cure” or “we found a previously-overlooked treatable tumor.” He only spent about 20 minutes with us, but he did seem to have prior knowledge of my case ~ details I had told the PA six months ago. That was reassuring. Maybe he actually was back in his office, reading my file thoroughly, pacing back and forth, stroking his beard, massaging the bridge of his nose, calling his colleagues, looking up case histories in large, dusty medical tomes… Ok, doubtful, but I’m grateful he took a cursory glance at my paperwork before coming in the room.

So, this was the appointment for which I waited a total of seven months. The first time I went to the Chronic Fatigue Clinic was laughable. It turned out to be an intake appointment: hours of question-answering and no information or practical advice beyond that I should eat pickles and pizza to get my blood pressure up. This time around, the vast majority of the discussion was with a “pain specialist” who works with the main doctor. I answered a long list of questions again, this time about my current symptoms and their debilitating-ness on a scale from 1 to 10. Pain and headaches are currently my worst symptoms, followed by stiffness, achiness, exhaustion.

When the main doc finally joined us, he said…very slowly… “your symptoms are confusing” …pause… “they’re so varied” …pause… “but” …pause… “we still consider this chronic fatigue syndrome.” About five minutes later he said, “the reason you’re confusing” …pause… “is because you tested positive for…” For what? FOR WHAT!? “…plasmodium.” Oh. Yeah. But that was a false positive. Right? He didn’t seem to quite buy the false positive for whatever reason, which now has me thinking about malaria again. He didn’t want to pursue it, but he just was so slow and thoughtful about this malaria conundrum that it made me think he knew more about how those tests work than I do and that the positive results shouldn’t just be swept under the rug. Regardless, I have no symptoms of active infection, so he thought we should move forward with CFS symptom management.

Both doctors gave me a brief synopsis of “central sensitization” and how chronic pain manifests itself. Although I still felt like I knew more than both of them about ME/CFS, I’m hoping this was just because doctors never show all their cards (or even that they HAVE cards) in one office visit. I’ve stopped holding it against them. They don’t have time, after all, to convince me that they know their shit. And the main doctor’s eyes said he cared, so I’ll trust him. The first doctor did try to explain things as succinctly as possible (nerves, serotonin inflammation, blah blah), although I knew it all already and, after talking fairly quickly for 45 minutes, I felt like I was about to pass out. I start out so strong and drain out so quickly. I felt myself slipping lower in the chair. My head felt like it was being held up by a noodle. I kept looking longingly at the rumpled, beaten-down gurney.

melting

The main doc, to his credit, didn’t dumb anything down and emphasized repeatedly that the medical community does not fully understand the mechanisms behind what happens in chronic fatigue syndrome, but that it is a central nervous system disorder. He said the etiology of CFS, fibromyalgia and chronic pain is the same, so the treatments are similar. He used to work with Jon Kabat-Zinn, which excited me since I’ve read Kabat-Zinn’s book, listened to his meditations and podcasts etc., and my therapy has been based on his mindfulness models.

Unfortunately, I didn’t get a chance to ask any of my questions: Should I see a rheumatologist? Cardiologist? Neurologist? Should I be tested for heavy metal toxicity? Hormone levels? Serum electrolytes? Coxsackie? XMRV? They didn’t want to retest any of my year-old blood tests without any new and/or severe symptoms.

Ultimately, my marching orders were to start Cymbalta at 20mg, see the clinic’s psychotherapist and read The Pain Survival Guide (written by Dennis Turk, a colleague of theirs, incidentally). Also, both doctors were emphatic that exercise was the best medicine (although, they called it “activation” to try to trick us into thinking it was more technical and less threatening). My husband piped up about our fears when it comes to graded exercise. I said, “I try to keep active, but if someone is going to ask me to lift a weight… forget about it.” Momentarily, I wanted to scream: Get into my body for one week and then tell me to exercise or waste energy seeing your psychotherapist or come back to useless appointment after useless appointment! But, it was only momentary. They’re trying. They’re treating us. They’re our only hope.

As we were leaving, I said, “Call me if you need a guinea pig.” The main doctor said, “You’d be amazed how many people say they’d like to be part of research studies.” “Not really. When you don’t want to live like this, there’s not much to lose. We need all the help we can get.” This coming from the lady who has unopened bottles of SIX different prescriptions that might supposedly help me. I’ll participate in a research study as long as you don’t touch me or give me any drugs.

Daily gratitude: for all the doctors and researchers trying to find the answers to ME/CFS/FM. Thank you.