…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.

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

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……

Rotten on the Inside.

I spoke too soon about Fuji apples. I just cut into this one and it was already brown on the inside…. Oh, and I never mentioned the broccoli mites! I doubt very many people would even have noticed them – they looked like the tips of the broccoli itself and were clumped in between the branches. I don’t mind insects in my produce – I once almost ate a huge grasshopper in my organic salad and you have to wash slugs and critters off our garden veg, of course – but there was something disquieting about how camouflaged these little buggers were. And it is unnerving when fruit looks so delicious on the outside, but is rotten when you slice into it. Oh god, I just described this and so many other diseases… Rot that can’t be seen on the outside. Invisible illness.

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The Next Installment in Bad Food Experiences

Some of you might recall my experience with earwigs inside a peach and mold inside an apple and the bloody, black soul I found inside a banana… My saga continues with the manky, moldy, mildewed, malodorous COCONUT. Yes, those are colonies of mold growing in the shell and on the flesh, which is meant to be white. And, yes, it smells bad ~ my husband wouldn’t let it stay in the house.

coconut

I also want to mention that there is something wrong with some organic foods. Three times I have bought organic avocados which look great on the outside, but are weirdly stringy and discoloured on the inside. And, worse, they are tasteless! I’ve never experienced a “watery”-tasting avocado until I started buying them in the organic store. Also, bananas. I won’t buy organic ones anymore because they are strange inside. Their molecules are different; they don’t hold together the same way  ~ they separate length-wise when you are just trying to peel them. And they brown strangely. We have bought green organic bananas and, a few days later, they are still mostly green but practically liquid inside. Ew. I don’t get it. Is it because our food is so processed and chemicalized that I don’t even recognize the real thing anymore? And why are Red Delicious apples mealy, Granny Smiths give me a stomach ache, Mackintoshes are gorgeous to look at, but have no flavour, and Fujis are consistently crisp, sweat and tart? And where did all the gnarly crab apples go? And cooking apples? Did you know, when I was a kid in Ireland, we got apples, tangerines and nuts in our trick-or-treat bags?

Apple bad3

CookingApples

perfect apple

 

 

 

 

 

 

 

Maybe the business of “organic” and the labeling laws are a bit of a scam… Maybe the bigger issue is loss of diversification in our crops (remember the famine?) and consumers’ changing ideals of what our foods should look like and… Monsanto. I kind of want to launch into a huge diatribe about losing our fruit and vegetable varieties and the importance of seed preservation and how necessary it is for us to spend our money on the unknown, under-appreciated, ugly foods and not be sucked in by the pretty, homogeneous GMO products… But, I’ll spare you.

I’m grateful for vegetable gardens. Assuming we can have access to heirloom seeds. And climate change doesn’t destroy everything. 🙂