…it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled…

What a roller coaster it has been. One day I want to write about one thing, the next day, everything has changed and I want to write a whole different post… So, I wind up writing nothing at all.

I spent three days feeling good. And I mean good. Stiffness was drastically reduced, my back pain was virtually eliminated, my energy level was up and, best of all, I had no headache. For three days, I wasn’t grimacing at my husband’s footsteps or holding my ears while we watched tv. It was bliss, I tell you. Then, a series of unfortunate events: Sunday night, my husband turned on our yet-unused gas fireplace insert (purchased because wood fires make me dizzy and my lungs burn) and the house filled with chemically burny metal paint fumes. I didn’t think much of it ~ it’s a brand new unit, after all ~ until Monday morning when I woke up very dizzy. My husband had gone to SO MUCH trouble to get this fireplace for next to nothing ~ driving out of the city to a clearance sale, standing on the roof, repairing the chimney for days, going into the crawlspace and disappearing into the hearth to run the gas, building/grinding/soldering/I-don’t-know-whating a framework because the insert was much smaller than the opening to our fireplace… So, I was upset and emotional all day. What if the fumes from the fireplace made me dizzy? Oh no, we didn’t think of that! What if the new paint or whatever doesn’t burn off and that smell lasts for ages or the permanent off-gas causes me to get dizzy or makes my eyes burn or makes my chest tight…? Where will I go while he tries to burn off the smell? Should I get a hotel? What if this bloody fireplace causes me to be worse in the long term? The usual fretting. So, we were worried and annoyed and frustrated. Also, I think everything was exacerbated by PMS because, after months of being an emotional zen master, I felt inflamed. I was distraught and enraged. I was guilty that my husband’s fireplace project might be a complete waste. Knowing my sensitivity to scents and chemicals, I was frustrated that we hadn’t taken this into consideration. I was upset that my husband wasn’t more sympathetic to how this might worsen my symptoms (he wasn’t pleased when I asked him not to turn it on again). I was furious that this disease ruins everything. That night, knowing my period was looming and taken aback by the onslaught of my emotion, I started the birth control pill again. I thought, Whoa, PMS is HELL. I need my hormones regulated again. Then, that night, things fell apart. I woke up feeling like someone had turned on a shower over me. Sweat was running down my ribs and dripping onto the bed. I was so confused. At first I thought it was blood… Then I thought maybe my cpap machine was leaking water… I hadn’t had these sort of drenching night sweats in so many months, that I didn’t even recognise the symptom. My sheets were soaked. I got up, pulled off the sheets, changed my pillow, lay down some towels. My cpap mask and headgear were slick with sweat. I had to take it all off to dry it, wash my face. And I was shaking. And scared. Was it from the pill?? Was it from the heightened anger and emotion of the day? Was it from the tart cherry juice I started drinking? Was it from the fireplace somehow? Was it because I have been taking melatonin every night for too long? I checked my blood sugar to rule out hypoglycemia and went back into fitful sleep.

My acupuncturist encouraged me to see it as a good sign. He explained that, in Chinese medicine, as the body gets stronger, you will experience some of the earlier symptoms again. He said, I had been in the Yang Ming stage, where the pathogen was deep inside my body, but, as I try to fight it off, the pathogen is pushed into the Shao Yang ~ the “Lesser Yang”, Which is characterised by the chills and sweats. He said, “Fever means you are winning.” That made me feel better for about two hours until I developed a crushing headache, which hasn’t gone away in five days. And this headache isn’t the normal one ~ it feels more like the narcotic bounce-back headaches I get. So, I start the relentless questioning again: Is it from the acupuncture (it got much worse that night)? Is it from the birth control pill? Is it from the fireplace? Did I overexert myself? Is it from the tart cherry juice, for fuck’s sake?? The hard part is that I am convinced the headache is from the pill and, if you stupidly go online and research it, like every other drug in the world, the horror stories make you want to stop right there and then. So, here I am again… weighing the pros and cons of having a viciously painful, incapacitating period over Christmas or putting up with this headache all day, every day, which is not touched by painkillers and makes me feel as if I am carrying a very dangerous, sleeping 2,000lb crocodile on my head: constant pressure and pain, never making noise or sudden movements… Right now, not being in the throes of period cramps, I choose a period over the headache and I decide I won’t take the pill tonight (imagine what I am doing to my body jumping on and off the pill like this!). However, you know one week from now, when I am curled in a ball, weeping and ~ god forbid ~ the headache hasn’t gone away, I’ll be wanting to put myself back on birth control.

Those few days before the fumey-angry-sweaty-pill day were glorious. I thought I was coming out of the dark ages. I was sleeping better, I hadn’t put IcyHot on my back in ages, I didn’t think about a painkiller for two whole days! I’ve had the surge in energy before but I can’t remember the last time I had had some relief in stiffness and pain. Heaven.

That’s my catch-up. I am just trying to maintain my tenuous grasp on Okay, so we can have a nice Christmas with my sister and her boyfriend.

Speaking of, my sister and brother came over to visit for one day last week (my brother, a pilot, had a layover here) and it was absolutely wonderful. Even though I had tried very hard not to talk too much, gesticulate too much, laugh too much, walk around too much, still, by the end of the night, my internal tremors were vibrating from scalp to toe, my eyes were unfocused, my face was red and muscles stiff… I crawled to bed at 9:15pm and thought, “That day was worth every symptom.” I am so grateful for family, for lightness and conversation and laughter. Once in a while, it is important to put fear away and forget the careful construction of the day… and just live a little.

You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it.They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster.

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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……

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.