Tag Archives: sleep

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Ghosts in the Machine

Yesterday, my acupuncturist said, “This session should make you very relaxed and tired and you should sleep very well.” That prediction actually seemed to be true until 5am when the ghost in my room pulled and released the window blind and woke me up like a flash-bang detonated next to my head. I had been sound asleep, dreaming about Janis Joplin of all people. It’s one of those spring-loaded, black-out blinds and the sound of its uncontrolled retraction ricocheted off of every surface in the room and bounced around my cranium like a high-speed destructive bowling ball. After figuring out where I was and who I was and what had happened, I regained control of my fight-or-flight panting and was able to release my fingernails and toenails from their death-grip in the ceiling plaster. I lay down, trying to go back to sleep, but I knew that sun would come streaming in soon and I wake up from the glow of an alarm clock, so I had to make a move.

I stepped onto the chest below the window (climbing Mount Everest) and reached up in the dark to try to get a grip of the end of the blind, but it had wound itself too tightly to get my fingers behind an edge. Then I realised I was standing in my bedroom window naked and, if someone happened to be out there in the garden or my neighbour happened to have insomnia and was gazing out her window, they were getting an eye-full. I stepped down off the chest, put on my robe and climbed back up (Mount Everest again). After fiddling with the blind from every angle, I knew I wouldn’t make it budge without some sort of pliers to grip the end. I was also still shaking from the adrenaline and sweating from the exertion of standing up out of bed, climbing, reaching above my head… So, I gave up and went searching for my eye shades. Of course, they were in none of the usual places. I went into my meditation room and found my dusty back-up pair, knowing all these lights on and this rummaging was waking me up more and more. And worse: the dogs downstairs would think it was morning and, once they’re up, I’m screwed. That’s a combined total of 170lbs of hunger.

Back in bed, I lay trying to sleep for about an hour and, just when I was drifting off, the Rascally Robin started pecking at the window in our living room. I keep hoping it’ll stop and I keep forgetting to do something about it during the day, but EVERY MORNING AT AROUND 6AM this robin starts attacking his reflection in our window. I realise this wouldn’t wake up 90% of you ~ it’s a window on a different floor, for god’s sake ~ and I tried so hard to talk myself into believing it was just the soothing clickclack of a branch in the wind, but it didn’t work: I would start to drift off and it would wake me up every few minutes. Over and over. Torture. SO, I got up and closed my bedroom door. I know, this seems like an obvious remedy ~ something I should always be doing ~ but a closed door in our house is like a dog whistle. I could lie in bed all day with the door open and neither dog would have any interest in coming in, but, close that door and they are behind it scratching, whining and pacing back and forth, sure they are missing out on some awesome adventure.

Sure enough, as soon as I closed the door, got back in bed, put my eye shades on and settled down ~ just long enough for me to do all those things ~ there was a scratch on the door. And then a whine. I got up, let my dog in, let him on the bed, told him to shut up and then we both lay down and listened to the Rascally Robin pecking on the window downstairs. When it got a little louder, my dog started to get interested. He started doing that “aa-FUH” thing that dogs do ~ that half-bark puffing air through their lips. So, I started looking for the earplugs that my husband had gotten me ages ago. Up out of bed, rummage rummage, back in bed. The little packet only had one earplug in it. Not joking. Up out of bed, rummage rummage, got second packet, back in bed, insert earplugs. Now, picture this: cpap mask, medical tape over my mouth, my Zeo headband, earplugs and eye mask. Seriously?

The thing they don’t tell you about earplugs is, if you lie on your side in half-sleep and feel something burrowing into your ear, you wake up. Because that could be spiders or earwigs or ticks, oh my! The other thing they don’t tell you is, earplugs HURT. They make your ears ache. They make your head ache. Especially if you have the wee-est ears in the world, like I do. If I were watching, say, Led Zeppelin play a concert, I might not notice the ache. Or, at least, it would certainly be worth it. But, lying in the lightening room, feeling exhausted and traumatized, it began to feel like someone had filled my eardrums with ever-expanding putty. And, although I couldn’t hear the robin anymore, I was suddenly enveloped in my OWN noise. My bed was a sensory deprivation chamber. My gurgling stomach sounded as if it were amplified through a long pipe into my brain. My heart was like the drug smuggling airport scene in Midnight Express. The hum of the cpap and my metronomical breathing were like Dave in the spacesuit trying to change to manual controls, while Hal sings, “Daisy, Daaiseeeey…”

Just as I convinced myself this was soothing, womb-like and I could deal with the earplug pressure, my 105lb Rhodesian ridgeback jumped off the bed, went downstairs and rang the bell hanging on the front door ~ his signal to go out. And then he rang it again. And again. I knew, however, this was a call for breakfast. He didn’t need to go out. The cheeky bugger was trying to get me downstairs to feed him. I ripped the tape off my mouth and yelled, “GO TO BED!” It worked for about half an hour and then I heard my husband getting ready for work. I called it quits at 8:30am.

My sleep graph: the top line "W" = Wake

My sleep graph: the top line “W” = Wake

I did not embellish any of this and, although, I’m really trying to make it into a comedy, it devastated me. After all these weeks of horrible sleep, to be roused permanently from such a nice slumber after 5 hours, feels so unfair. When I came downstairs, my husband told me he was getting up at 6:30am tomorrow morning (a Sunday) because of the clocks going forward. I burst into tears.

I’ll try valerian for a week or two, but, if it doesn’t help, I’m moving on to brain chemical-altering, heavy-duty drugs. End of story. I thought I could will my sleep better, but this is beyond my abilities. I hope I haven’t caused permanent damage.

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Warrior Princess

I’m having a hard time writing lately because I think it must be really tedious for the audience to hear the same old things over and over. The one consistent thing about ME is its inconsistency. Do I really want to write about how hard it is one day and then how hopeful I am the next? I wouldn’t want to read a blog without any substance, info, insights… I’m beginning to wonder how people continue blogs for years. I guess that’s why writers start traditions like Gluten-Free Fridays and Movie Mondays ~ to keep readers’ interest, you need some other pearls of wisdom to augment the I managed to do laundry! and the I couldn’t get out of bed again posts.

But, this blog is also a way to track my symptoms for myself. I’ve gone back to read past posts numerous times to see how I was feeling, what my “voice” was like at a certain time. So, I apologise if this is less entertaining than many blogs out there and more a personal ticker tape of weekly mundanity. Or, indeed, simply a big downer. I keep reading other ME/CFS blogs that are positive and encouraging, strewn with great tips and witty anecdotes and I’m not sure how they do it. Even bedbound patients bare their souls so beautifully and manage, from the simplicity of their four walls, to make the most profound observations. My current observation is: this disease fucking sucks.

My mood is pretty good right now, though, and I’m much more hopeful than I’ve been since last summer. I’ve had three good days in a row. I’ve walked between 2,000 and 2,450 steps each of these days, which is unheard of. When I feel better, I motor around the house without even realising it. I go up and down stairs just to get an envelope rather than waiting until my husband gets home to help. I stand up (looking kind of like a pregnant lady, pushing myself up with the arm rests, jutting out different body parts to help hoist the weight of the rest of me upright) to let the dog out 17 times in one hour rather than ignoring him half the time (because he only wants to come back in again. Because it’s raining and cold. But there might be squirrels now. Oh, it’s cold. But there might be squirrels now. Are you doing anything fun inside? There might be squirrels now. Et cetera). 

let me in

My spine and neck and lower back are not screaming too badly. My head doesn’t hurt (comparatively). I don’t feel flu-ish(ish). My sleep is still awful and I’m working towards going to bed at 8:30pm to try to get one more hour before the inevitable 7am wake up… Always the pleading with the universe for just One. More. Hour. All in all, though, today I think once again, I can kick this. I will be one of the few.

But, last Saturday I was weeping on the couch, unable to do anything but ask my husband how I can go on. How do people do this? Why don’t I have a fighting spirit? I thought I was strong, I thought I could handle anything, I am the rock… But I can’t do this. Why am I the only one in the world with a chronic illness who isn’t brave enough to continue? When the symptoms are bad, I dissolve. My happy, energetic, sarcastic self disappears behind a shroud of bleakness. I never would have predicted that I would respond this way. I would have said that I have a high pain tolerance, high stress tolerance, emotional fortitude, and an insatiable desire to live life to its fullest. I would have said that I could weather whatever comes, fight tirelessly, and come out triumphantly wiser on the other end. After all, whatever I set my mind to, I accomplish ~ and accomplish well. I thought.

Sunday ~ the next day ~ was probably the worst day this year. There was no weeping because I was in too much pain. There was no wondering aloud why I couldn’t maintain positivity because I couldn’t move. My brain activity had retreated to survival mode: breathe, this moment, tomorrow’s a new beginning…

And it was. Monday was the first of my good days. From the worst to the best. Immediately, I thought, Oh, maybe I won’t have to tackle disability. Maybe I won’t need to beg the bank to reduce our mortgage payment. Maybe I can get a job and shake off the dust of this two-bit existence.

And so it continues. I will try not to depress you with my reality, but I will also not sugarcoat it. Today I’m in fighting shape ~ mentally, if not physically. I am not cut out for this life. I am meant to be standing on top of a barstool singing at the top of my lungs. I am meant to be racing up and down flights of stairs with my nieces and nephews looking for treasure hunt clues. I am meant to be gorging myself on decadent meals during long, chatty evenings with friends. I am meant to be working in a job I love, making a difference in the world. I am meant to be walking the streets of Dublin for hours and dancing on the beach with my dogs and falling apart with laughter with my siblings for one precious week each year.

I am grateful for every moment that I feel like the fierce warrior I thought I was… That I think I am… That I will be again.

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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.

IMG_20130209_155627 (1)

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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What I Know For Sure:

What I Know For Sure:

The flu shot caused me to come down with this evil disease. Let me be clear from the start: I am and have always been an advocate of vaccines, so I’m not going to tell everyone that they should stay away from immunizations or not get their babies vaccinated. If I had a kid, it would get all the shots recommended and, if I were healthy, I’d be out there getting vaccinated for pneumonia and pertussis and flu and anything else I could get my hands on. Health professionals will never warn about the risks of the flu vaccine because, from a global perspective, we are much better off with people getting the shot than not. A few bad side effects are the cost of helping worldwide disease control ~ just like with all drugs. I get it and I agree. But, what they SHOULD be saying is: Take a look at your overall health. Has your body been acting normally this year? Have you had any bouts with viruses or infections lately (regardless of whether or not you feel good on the day of the vaccination)? Are your allergies worse this year? Have you been diagnosed with any other health problems recently? Even: Have you had a lot of dental work or a surgery or extreme stress recently? Because that might have changed my mind about getting the flu shot. Probably not because I got it every year and I was feeling fine at the time… but maybe.

My body was primed and ready for ME/CFS. It may have been primed for this since I was a toddler with recurrent pneumonia and a teenager with recurrent tonsillitis and an adult with recurrent bronchitis. Or maybe I was primed by years of low blood pressure, mild IBS, and hypoglycemia. Or, if those issues didn’t contribute, perhaps it was my body having to endure the complete body meltdown that is anaphylaxis or the radiation needed to kill my thyroid and its goiters (not to mention what being hyperthyroid for 7 years did to my body). But the truth is, after all that, I felt fine. I considered myself healthy. It never occurred to me to take vitamins or change my diet or take any steps to improve my sleep. I was energetic, happy and considered my neck injury as my only chronic condition.

What I wish had happened in October, 2011 is that someone had grabbed me by the shoulders, looked in my eyes and said: You have been under chronic stress this year and struggling to be happy at work. You have not slept even a few uninterrupted hours in years. You were just diagnosed with an autoimmune problem and lots of allergies. You’ve had a lot of dental work done recently. You have traveled out of the city 5 times in the last 4 months. You have “fainted” multiple times and had unstable vitals, most recently 4 months ago. 3 months ago, you had a chest infection, 2 months ago you had a bad diarrheal traveler’s bug that landed you in hospital. Even though the flu vaccine is a dead vaccine, it can still rattle your body, so, if you don’t think your immune system is in tip-top shape, give it a pass this year!!

And then I wish they had really made me believe what stress and lack of rest can do to a person. Listen all you workaholics and insomniacs out there: I know you think you’re indestructible ~ that you are rocks, able to handle anything ~ but, you’re not. And your bodies will stop one day.

I’m grateful for the lessons I’ve learned in this past year.