Tag Archives: sleep

by

I Love To Drive.

I jinxed myself. I didn’t even get 6 hours sleep last night, very little deep sleep (10%), battled the full face mask all night and tweaked my neck badly so I can’t look to the left. Bahg! Jinxed. So, zombified today.

On a good note, yesterday I drove! And it was delicious. I smiled the whole way to my appointment, relishing changing lanes and turning corners. It’s amazing the joy I can get from the little things now. My glee was not so much because it was a sense of accomplishment or a baby-step forward or anything, just simply because, in the words of Raising Arizona‘s Gale Snoats: I love to drive. I love it. I love being in control of where I go. I love the feeling that I could just leave and see anything I want. I’ve fantasized about this my whole driving life: on the way to work, I’d think, I could just not take the exit and keep heading East… I’d be in Boston soon, a city (and accent) I love…

I did the cross-country trip in the opposite direction 17 years ago, by myself, on my way from Minnesota to the Pacific Northwest. I could write a book about those few days driving across the country. I had a teeny red Ford Festiva named Peppy. He was my best friend for a long time. He was my escape for years ~ in college and through all of my 20s, I would take refuge in Peppy when I needed to get away. I’d just camp out there, listening to music, smoking cigarettes. Years before, fed up with the endless Midwestern winter, my friends and I drove from Madison, Wisconsin to New Orleans for Mardi Gras and Peppy was our hotel. Another year, on a whim, we drove Peppy to the East Coast, walked around Harvard’s campus and then spent St. Patrick’s Day in Central Park. We did the return trip in one shot, taking turns picking music, all of us singing together at the top of our lungs. But, when I drove (3/4 of the way) across America by myself… heading West… leaving college behind… it was the first time I truly felt free. It was before mobile phones and all I had was a bunch of cassette tapes and Hobbes, my childhood teddy bear, sitting shotgun. It was a magical feeling: the stereo turned up all the way, cruising at night on a desolate highway ~in between cities, it seemed we were alone on earth, the overhead lights rhythmically slipping up and over my windshield. It was hypnotic and peaceful. I’ll never be able to listen to The Cure’s Disintegration in daylight again.

There was a Calvin and Hobbes cartoon where Hobbes posed for a bunch of photos in all these different wacky positions and, at the end, you see Calvin looking at all his snapshots and each one has Hobbes slumped, motionless, in the same pose. It broke my heart ~ in a loving way. The imagination of a child, playing alone… So, on that road trip, I took pictures of my Hobbes in all the photo-op places off the highway. Hobbes looking out over the Badlands, Hobbes in the dirty motel in Montana, Hobbes sitting in the middle of a flat, empty road in Idaho that went in a straight line into eternity and, finally, Hobbes on the ferry to Bainbridge Island. I was trying to get to the ocean like the Motorcycle Boy from Rumblefish ~ always wrapped up in the tragic, beautiful fairy tale ~ but I didn’t quite make it. Maybe one day.

motorcycle boy

by

Melatonin, Fleece Sheets and Aunt Flo

In the last fortnight, all but 4 nights I had 8+ hours sleep. I didn’t want to jinx it, so I haven’t written about it sooner. I still look exhausted ~ maybe even more so ~ and I’m still ridiculously stiff and sore… But, the slight increase in energy is still here. Last night, I didn’t feel like going to bed until 9pm! Usually, it is a struggle for hours before that. I call 5pm my “pain killer hour” ~ when everything starts to really hurt and I begin to debate whether I need a drug. It’s work to not just go to bed and lie down.

The best nights I’ve had were in the last week, after I started my supplements again and also added in magnesium and melatonin. Melatonin every night. I know opinions are mixed on whether melatonin should be used, but, if it’s working, I’m continuing with it! Although, I’ve been having an incredible number of vivid dreams and nightmares (last night there was a lot of blood and gore and my dog had two heads). Is that a side effect of melatonin?? I also have to credit my happier nights to the fleece sheet set that my angel friend, Z., got me. I would have never bought them, but they have reset the way I see my bed ~ turned it from a sickbed into a soft, cozy hug with which I can’t wait to cuddle.

fleece sheets

I’m still not getting very much deep sleep, unfortunately. And even more unfortunate is the fact that the cpap still wakes me up and it seems paper tape over my mouth is my new lifelong protocol… The new/old (because she told me she is leaving the practice) sleep doctor (whom I liked very much ~ I did not mean to say she was an inferior clinician or that she had frustrated me by talking about whether my sleep problems were caused by childhood trauma and/or anxiety ~ these were practical questions and I appreciated her thorough investigative work, honestly. In my other post, I was merely trying to point out that, in an effort to conserve energy, words and effort, the ME/CFS patient has to steer the conversation and not tell the whole truth sometimes so it doesn’t get off track. In fact, the exact words I said to the sleep doc during this conversation were, “Totally off topic, but do you think I should consider a dental device?”)… anyway, she said she didn’t think the dental device was the right move for now ~ that I should give the cpap another month for sure. So, I will. My pressure is set at a 5-6 when other people need 15 or higher, so I count myself lucky. And perhaps, one day, my brain will stop its nocturnal activity. She also thought Cymbalta was a good idea, but I refuse to start it while my sleep is better. It seems it can either disrupt sleep or make you sleep more, but I don’t want to rock the boat right now.

The other thing on my mind is my period. I know you are all incredibly excited to hear about that. I didn’t even bother posting about my first ovulating period a few weeks ago because it was so beyond the normal pain of what a period should be, that I didn’t want to suck you all down with me. It was more painful, heavier and longer than any period that I can remember. Aunt Flo (as my college bff used to call it) was visiting for a full EIGHT days. And she’s a messy, angry, soul-sucking bitch, let me tell you. It solidified the fact that she is no longer welcome in my house, even if we are blood relatives. I agonized over the decision to get an IUD for days, but it can take months for your body to stop cramping and there are chances that the pain won’t be better long term. So, in the end, I have decided to go back on the pill ~ even though I am over 35, get migraines with auras (increases the risk of headaches and stroke), have no good bacteria in my gut (which can increase circulating estrogen), and my life is like one long sedentary car ride (increases the risk of blood clots). But taking the pill continuously guarantees no period and no pain ~ no other option does that. If I didn’t have ME and I wasn’t worried about surgery, I would have a hysterectomy tomorrow. Aunt Flo has never liked me and our knock-down-drag-out fights have sent me to the emergency room five times. So, maybe, if my body gets stronger, I will consider an IUD or ablation or something more permanent.

aunt flo

Thursday moment of gratitude: Peasant food! Soups and stews and leftover mish-mashes are the best for my restricted diet and winter warmth. If only I could have soft, crusty bread slathered in butter to dunk in them…. mmmmmm……

by

“39 year old woman, looks like shit and in apparent hell.”

Today I read a post on a CFS forum titled “disappointed reaction from sister-in-law” which had me fired up in a way that is a rarity since I left my job. This woman had told her family she would not be able to attend a baptism on December 23rd and also be able to come over on Christmas Day to participate in all the festivities. Her sister-in-law asked, “Why? Are you sick?” and then, seemingly fed up with the CFS/ME/FM “excuse”, the sister-in-law decided to educate her on what the disease is and why she should be able to attend family functions. Why? Are you sick? My pulse is racing just typing that. It is utterly reprehensible that this disease is called chronic fatigue syndrome and that it is characterized by “post-exertional malaise” and that all medical tests are relatively normal and that we don’t look as sick as we are. It’s such an unbearable injustice to add this insult to injury.

It’s not just friends and family. I have given up talking to doctors after I realise they have zeroed in on my type-A personality or obsessive tendencies or the sleep problems I’ve had my whole life or the fear of getting sicker. It happens every time. I had a visit with a new sleep doctor today and I talked about my night sweats and then about how I’ve always been a light sleeper. I joked (kinda) that, even in sleep, I wanted to be sure I heard an intruder. Her next questions were about sexual abuse and anxiety and I realised I’d said too much. As a patient, you can’t really be 100% honest – because they’re DOCTORS, their job is to see what you don’t. However, I think the majority of the time patients are pretty self-aware. I had to steer her back. No, no, no, these night sweats aren’t from anxiety – they’re from death taking over my insides so all the fluid in my body is squeezed out of my pores over the course of eight hours. You can’t imagine how much fluid there is in a body. And my sleep problems now can’t be equated to my lifelong insomnia and lack of deep sleep – this year, I am tortured, thrashing, contorting in pain, in muscle spasms, constantly waking, never peaceful. Luckily, in the last three or four moths, I’ve gotten a handle on the sickly night sweats – by realising they were caused by over-exertion and took everything down to the “housebound” notch. But, my point was, I realised there wasn’t much point in recounting my story to this new doctor. She wouldn’t be able to shed any new light and, in fact, it was the opposite: it was a long appointment, it was difficult to tell her everything from the beginning, it was disheartening that she didn’t really say anything about my sleep – which is why I was there – and, in the end, she said she was leaving the practice at the end of the week. Wow. More wasted time, wasted energy, wasted money. But I had to go for insurance to cover my cpap machine. That’s the deal. That’s the racket.

I got off track: Why? Are you sick?

I used to say that I thought everyone in the world should work one week in a restaurant. That it should be mandatory in high school or college for each student to put in a minimum of 50 hours, rotating positions so that you have some concept of what it is all about. I usually would declare this after some moron degraded me or tried to pinch my ass or ordered something without looking at me, without saying please or thank you. And I mean ordered it – as in, gave me an order. I was an actor, so I’d smile through it. But really what I was thinking in my head was, you won’t get to me because I’m smarter than you, I make more money than you and I guarantee I’m happier than you. It worked for a long time. Until, one day, there was no amount of money that would have made me give one more performance.

Fast forward ten years and now I think everyone should spend one week in my house. Or the house of anyone with M.E. Actually, I wish we could all spend a week in a thousand different homes in a hundred different countries, expanding our understanding, knowledge and compassion…. But, this is what I know right now: this house, this disease. I wish the doctors and the friends and the employers and that lady’s sister-in-law could all live with this for a week. And I don’t even mean live with M.E. – I just mean live in the house with the person with M.E.

Let me narrate to you how I feel in the morning, the inventory I take of my body, the pain in my bones as I get up and dress. Let me talk to you about my food choices – what will cause me the least distress, what will help the nausea, what will be the least likely to aggravate the IBS, what I can make (or ask my husband to make) with no grains, dairy, gluten, legumes, or eggs. I will show you how I decide whether I have the energy to shower (involves standing up) or do laundry (involves going downstairs and leaning over) or empty the dish washer (reaching down and reaching up multiple times) or walk in the yard (involves boots, coat, cold, taking steps). I will tell you all day, every day how badly my head hurts and how much my hands ache and how broken my back is. You’ll be able to watch me grimace every time a dog barks and close my eyes when I walk into a room that doesn’t have a dimmer switch and massage my neck endlessly, have trouble getting out of my chair, walk like I’m crippled, cover my ears when the ads come on the tv, begging you to mute it. I can explain how every day I weigh the pros and cons of medications: Will this take care of the pain or give me vicious bounce-back headaches? Is it worth taking so much of this knowing the liver problems it can cause? Will I be able to tolerate the nausea, dizziness and insomnia of this long enough to let the good kick in? Will this help me sleep but not give me a hangover? Will this help my muscles enough that it justifies the bowel intolerance? Is this helping enough to justify the $60 price tag? Is this worth trying even though it suppresses my immune system? You’ll see how carefully I go to different areas of the house, how every trip is calculated: never, ever go from one room to another without taking something that needs to go there, too. No wasted movements. You’ll see how I plan phone calls on my calendar: no more than one a day and none on the days that I have doctor appointments. No wasted energy. And you’ll see how often I have to lie down in the dark and how early I go to bed and how quiet I’ve become. It’s very understandable why doctors would think I am depressed – my hair isn’t brushed, make up doesn’t exist in my life anymore, I have no energy for chipperness and no need to form connections by chit chatting. No wasted words.

Worse than doctors seeing the wrong thing, though, is doctors not seeing anything. I read my records from an appointment earlier this year – in the very sick, dark days – the notes said, “39 year old woman, well groomed and in no apparent distress.” All the fight just drained down my body, out of my feet and into the earth. I felt defeated and limp. I get it, this is how they describe their patients… certain terminology is used… But, if I wasn’t in apparent distress, then… Well, then, he needs to come live with me for a week. Maybe I’ll make him dinner and then we’ll walk around the block and have a lengthy, animated discussion …and then he can watch what happens the next day. He’ll be able to see how I curl up in a ball weeping from pain, unable to speak, unable to move, unable to eat. And maybe he’ll think, Distress is too small of a word. In fact, malaise doesn’t really cut it – and neither does fatigue. How about chronic persecution syndrome? How about post-exertional perdition?

Are we sick? Yes. We’d rather not have to plan every hour and foresee every hurdle. We’d rather not isolate ourselves and lose contact with those we love. We’d rather be at every baptism and birthday and Christmas celebration and dinner date. In fact, given the chance, I’d guess that people with ME/CFS as a whole, would be the life of every party. We’d be the ones dancing, singing, eating and drinking until the wee hours of the morning. Wasting as much energy and as many movements and words as possible. 39 year old woman, dressed to kill and apparently having a ball.

by

…and I will hug him and pet him and squeeze him…

I don’t think I have the energy to write much because I have big plans today like making a few phone calls and washing my cpap. I’m also determined to do my stretches today, which I haven’t been able to do for ages. I had 19 very bad days. The worst day of all was two days ago. My brother, a pilot, was in town overnight and I wasn’t able to see him. I haven’t seen him since August, 2011 ~ two months before I got sick. I kept thinking, I manage to get to a doctor appointment and talk for 45 minutes, but I’m not able to meet my brother for breakfast? But he has another layover here in two weeks, so I get a second chance.

Then, right after that horrible day, miraculously, yesterday I felt better. Not great, but better. I wish I could adequately describe the difference between a bad-but-not-horrible day and a good-but-not-great day. They are worlds apart. Instead of getting out of a chair like a crippled, arthritic 90 year old, I get up like a typical 39 year old who is in pain. Instead of walking up the stairs to the bathroom delicately, with difficulty, concentrating on each baby step and clutching at the walls, I walk up slowly, heavily, but without much thought. Instead of watching tv as still as a statue, unable to smile, needing to block my ears at loud noises, but having a hard time holding my hands up to my head, I can laugh and operate the remote control. Instead of unhappily eating an apple or drinking an Ensure to pad my stomach for the pills I have to take, I am hungry and look forward to eating a (really boring) meal.

I looked in the mirror yesterday and there was pink in my cheeks, but not in a feverish way. I had been ashen for weeks ~ grey skin, dull yellow eyes ~ and overnight it looked like I had taken a walk outside. It feels like the Monster, who has been crushing you in both hands for weeks on end, had to scratch his nose or something and, with one of his hands not pressing in on you, you are suddenly able to take a breath… to have a conversation without sweating and shaking… you are able to pet your dogs and hug your husband and make granola. And the whole time you are thinking, thank you thank you thank you. That is when I can see a tiny seed of hope. I have to remember in the despairing, dark days of pain, that there will be another day in the future when the Monster has to let go to answer the phone or smoke a cigarette or whatever… and you will be able to move a little easier.

monster

I saw the Good Doctor on Monday and she is adamant that I stay away from dairy, gluten and grains still. I am also back on all the same supplements as before, plus berberine to combat yeast and magnesium to help pain and sleep (note to those that may not know: magnesium glycinate is the form that should not mess with your bowels. Other forms can help you poop or cause diarrhea, depending on how much you take). I’m thrilled. After months of stagnation, I have forward momentum. I told her, “I don’t care what we do, but I have to do something. If you don’t want me back on the supplements yet, I’m going to start the Chinese herbs.” After much research online into ME/CFS experts’ protocols, I was bolstered to see many of the same supplements that the Good Doc has me on (CoQ10, fish oil, acetyl-L-carntine etc.). I started them again on Monday and I wonder if they contributed to the uptick on Thursday. Placebo effect doesn’t really work with this disease in me, as much as I wish it would. It might make me feel a little lighter or more hopeful, but the placebo effect cannot cause the difference between practically bedbound and able to walk and talk. It’s more likely the fact that I slept fairly well Wednesday night ~ 8.5 hours. My plan is to start Cymbalta on Monday or whenever the initial nausea from the supplements wears off… so I can deal with the initial nausea of the Cymbalta. Joy.

Here’s my daily regimen:

 daily pills

by

An Update on my day-to-day…

Here is an update for those of you that have tried to contact me. I’m okay. Not great, but okay. After the Worst Headache, I had an up-swing for two weeks, feeling like I had more energy, less pain, more mobility and JOY. Today is day 14 of the subsequent down-swing. I have been struggling. I’m in constant pain, which gets worse in the evening. I have a headache and sore throat every day, my neck and my lower back are stiff, inflamed, screaming. There are jolts up and down my spine. My hands ache, my jaw is tender and I don’t even recognise my eyes anymore. Sunken and puffy, swollen, red, dry and circled with purple. I’ve had a hard time getting out of bed in the morning, I’ve only been able to do my stretches every other day, I’ve only been able to do 2 to 6 laps of the house, I’ve been walking somewhere between 1,000 and 2,000 steps each day. I haven’t been sleeping very well and my deep sleep keeps dwindling (according to the Zeo). However, I’m still walking, I’m still talking, I’m still sitting at a computer, I’m still bathing myself and making my way around the house. I’m still breathing. Focus on the positive!

I continue to use the CPAP, but I’m still having difficulty. The nose pillows-with-tape-over-my-mouth routine allows me to move around in my sleep and rest my head on its side, but I wake constantly from the air inflating my cheeks or traveling around my gums. It is the weirdest thing. I will wake up because there is a worm of air crawling its way along the outside of my bottom teeth. It will journey along my gum line in the front of my mouth and find a tiny outlet between my lips to whistle its way out. Or, I will awaken with one cheek suddenly puffed out, ballooned with air. Or, my whole mouth will inflate so I look like a chipmunk ~ with a mask plugging my nose and tape over my mouth, I expect my ears and eyes to bulge out like those squeezy rubber dolls we played with as kids.

Also, the tape is wreaking havoc on the skin around my mouth and the inside of my nose is raw and sore. None of that happens with the full face mask, but I can’t turn on my side without it moving, air escaping and me waking. Unbelievably,  the former situation is the lesser of two evils. Far fewer mask parts to wash, too. The washing of the CPAP parts is a huge ordeal for someone with ME. It is not an easy chore and almost negates the better sleep I am meant to be getting. The dental device that my father recommended costs $600 – $800, which I would spend if I could be guaranteed it would work. For right now, I just don’t have the energy to tackle a new appointment with a new dentist to get a new device.

The last few nights I have awakened in the throes of the full-body flex that I have talked about before. It’s as if there is an arc of electricity going through my body: back arched, toes curled, arms and legs rigid, hands in fists. I have thrown my neck out this way before. I now wonder if a muscle relaxant taken before bed is the answer for this. I’ve taken 1mg of melatonin a few nights this last week and I think it might help a little (or maybe it’s the placebo effect), but not enough. I should have taken my GP up on the offer for Ambien or Traxodone or Flexeril, but I’m such a scaredy-cat. It has to stop, though. I don’t think I’ll improve without pharmaceutical intervention. I’ve been taking tylenol with codeine every day the last few weeks and it’s not very effective at the low doses I like to take ~ plus, it gives me a kind of hangover. On Monday, I start Cymbalta. Duh duh duuuhhhhh….. Please don’t let me chicken out. I need to try something. My doctor said to expect to feel crappy for the first few weeks. But, in theory, it should help with the chronic pain, sleep and anxiety.

I continue my no-dairy-no-gluten-no-eggs-no-most-grains diet. I enjoyed starchy veg and popcorn over the last week, but, starting today, I am removing them from my diet again. I might be removing rice and/or oats, too. I am going to talk to the Good Doctor about that on Monday. After a lecture from my husband about what systemic yeast overgrowth might look/feel like, I am also going to try a little more diligently to cut down on sugar in all forms ~ fruit juice, dried fruit, Theo chocolate bars, agave syrup in my granola, cane sugar in my almond milk etc.

I sit here looking out the window at my husband in the garden, pruning our plum tree. He is tireless. Even when he has no work, he never stops working. He rakes leaves and mows the lawn and scoops poop. He shuttles me to and from appointments, does the shopping, cooks dinner. He washes dishes, hoovers, puts on sheets. In the past few years, he has rewired the house, replumbed the house, put in under-floor heating, cleaned out the rat shit and reinsulated the attic, built a second bathroom, expanded the first, built a shed for a new water heater and installed it himself. He landscaped our whole garden with an expertise that knew what it would look like in years to come ~ if he planted certain shrubs, trees and flowers in certain places at certain times of the year, given time, it would be a masterpiece. He built and tends the vegetable garden, he repaired our chimney and built me a porch with a little heater so I could get some daylight in the winter. He deals with his own physical problems and health issues and never complains. My brother called him a saint. My mother called him a hero. I call him a life saver. Without a shadaw of a doubt, I wouldn’t still be here without him. Gratitude is too small of a word.