SLEEP: Chief Nourisher In Life’s Feast.

Sleep has always been hard for me. My very first memory is being in my bed at the age of five, cuddling with my mother, while we were surrounded by a chilly, damp fog. The doctors had told my parents I needed a cold humidifier to treat my asthma, which now seems like the last thing I’d want since I’m most comfortable in a warm, dry room.

I never wanted to go to sleep, even as a kid. I remember my brother, who was 12 at the time, would voluntarily put himself to bed at an appropriate time while I, an 8 year old, would fight tooth and nail to stay up late. It wasn’t about watching TV — our only television was in my mother’s bedroom and Irish channels all went off the air late at night, anyway. It wasn’t about being scared, either (that came later). It was about enjoying the witching hour; wanting to listen to more music, read more books, write more poems…

A few years later, while visiting my father in America, I discovered MTV. It was one of my first addictions. I remember the physical excitement I had waiting for the next video to start. A breathless anticipation. It was like a gambler who just keeps putting the money down, hoping the next hand will be a winner. If I didn’t know the band, I couldn’t tear myself away because what if the next video is a good one?? Night after night, I would stay awake until the sun came up. It was my secret life: the thrill of not living a normal routine, of being alone and able to do anything. There was always a disappointment when the windows grew lighter. My father got up very early for work and I was always scared that he would catch me, black circles and spiral-eyed, glued to the television at 6 in the morning. When I heard his footsteps upstairs in the morning, I would silently slink up to my bedroom and go to sleep. A few times, I didn’t hear him until he came downstairs and, quick as a ninja, I would have the TV off and lie down in a convincing position to make it look like I’d fallen asleep on the couch. My brother, as usual, had gone to bed at a decent hour, even during the summer holidays.

One time I woke up to a sound in my bedroom: a zippery repetitive sound, and, when I opened my eyes, I saw the glow of a flame under a ghoul’s face. Then the flame went out and I heard the zipper sound again and the flame came back. It was a man at the foot of my bed, holding a cigarette lighter, lighting it over and over in the dark. It scared the shit out of me. Those seconds, while my sleep-slogged brain tried to wrap itself around this scene and comprehend what was happening, seemed very long …and have never left me. It turned out, it was a drunk friend of my cousin looking for the toilet. He’d somehow managed to find his way down the stairs to the basement and through two closed doors into my pitch-black room.

I don’t know if my nightmares started before or after that. They weren’t chronic and didn’t concern me too much, but, when they happened, it was memorable. I would wake up screaming or yelling or arguing. I would sleep walk and sleep talk. They were mostly obvious stress nightmares: dreaming I’d fail exams when I had exams coming up, dreaming I couldn’t get to all the tables and I was the only server in the restaurant, that sort of thing.

At some stage, I began sleeping very lightly. It was more or less a conscious decision. We had a few break-ins in my house and I conditioned myself to be on high alert, even while I slept. I wanted to know if anyone came in my room. I would awaken to any odd sound, even faint, and, once I became a self-conscious teenager, I could never sleep properly at friends’ houses or on planes or anywhere visible because I didn’t want to be seen drooling and slack-jawed.

Once I got dogs, my sleep became even lighter. I wanted to be able to hear my kids in distress since my husband sleeps through everything. In the first few years of their lives, there was a lot of needing to pee in the night and puking in the early mornings and injuries that required nocturnal consoling. And I can’t discount the sleep interruptions caused by 185 pounds of snoring husband and 175 pounds of scratching, licking, readjusting dog in the bed beside me.

Just as I can count on one had the memorable, incredible meals in my life, there are a few memorable, incredible sleeps of my life. One was in Germany, the first night I was there as an exchange student. The room was silent and had heavy metal shades on the outside of the window that you lowered with a crank on the inside. The door was solid and soundproof. It was like being shut into a dark, silent prison cell and I slept like I never remember sleeping before. Of course, for days afterwards, the family with whom I was living made fun of how late I got up, so I never again during my stay let myself sink that deeply asleep.

Another time, I was visiting my oldest brother in Tennessee. I had just arrived from Ireland and he put me in the spare room and said, “Rack hard, Elizabeth.” That was a term they used in the Air Force, I guess. There was something about his permission — his COMMAND — to sleep long and hard and, also, the knowledge that my two family members that were there — my brother and mother — routinely slept 10+ hours, so they wouldn’t judge, that allowed me to let go into blissful slumber. Their plush bed probably helped, too.

As an adult, working in bars and restaurants, I never, ever went to sleep before 3am and regularly stayed up until daylight. These were the heady years of booze and fun. I could drink and talk all night. One night when I had just met my husband, we were staying up late, listening to music and talking — sharing really important stuff like you do with a new love — and he fell asleep mid-conversation. I was aghast. How rude! And who wants to stop the revelry before sun-up (or before the wine runs out)? What a weirdo. But, it’s one of the reasons he will never have M.E. He has an off-switch. Another reason is, he’s not a Type A perfectionist the way I am. I was always pretty obsessive about succeeding, but, once I quit drinking and became a full-blown workaholic, sleep got worse. I worked late, wound down from work even later and got up early to do, go, be… In between, I had responsibility-laden, over-achiever stress dreams.

But nothing… none of it compared to what happened when I got sick with M.E. Night terrors are very different to nightmares. Not sleeping much when you’re healthy doesn’t come close to a the lack of sleep caused by a broken immune system and a poisoned body. You’ve heard about it ad nauseum in this blog, so I won’t bore you more. All of this is just to set the stage to explain the incomparable joy of the last few months. I’ve been sleeping. I’ve been closing my eyes, falling asleep within minutes and not having conscious thought again for 7 hours, sometimes more. I haven’t wanted to shout it from the blog rooftops for fear of jinxing myself, but this is big. This is healing. This feels like what a normal person must experience. I’m still suffering from the lack of circulation, pain and nightmares, but it’s SO MUCH BETTER. I still don’t feel recovered in the mornings, but there’s SO MUCH HOPE. Every time I look at the clock and see 9am or later and my body is dry and soft and the last thing I remember is turning out the light the night before — no waking panting, heart-hammering, no drenching, trembling sweats, no full-body muscle spasms that twist my neck and crack my jaw — I break out in a shit-eating grin. Pure celebratory joy. A feeling I want to bottle and carry around with me. A swig here and there of rested jubilance.

My top tips for making some headway in this area: Feeling safe in your home, sleeping alone, never drinking so much before bed that you’ll have to get up to go to the loo in the night, balancing hormones (really, this may all be a consequence of topical progesterone and pregnenolone), and good ear plugs (life changing).

Also, when you have felt that you truly might die, every day afterwards is gravy. Going to bed excited that you got another day and you get another one tomorrow — but not so excited that your nervous system is jazzed up — that’s the key.

Sleep that knits up the ravell’d sleave of care,
The death of each day’s life, sore labour’s bath,
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.

March Update

I haven’t done an update in forever and it’s a shame because I look back on my updates a lot to see how I was in the past and compare it to how I am now. It looks like I’m at about the same level of functioning as I was at this time last year. A little worse, unfortunately. Last year, I was walking more steps, had been out in the garden more, was driving a bit (I drove to an appointment this week for the first time in forever, so there is some progress).

I’m still trying to regain some ground after the onslaught of nocturnal mast cell/viral/ME/inflammatory bowel reactions that started in September when I tried Cromolyn. Thanksgiving and Christmas were probably the two sickest nights of my life. As soon as I was resurfacing from Christmas, I got hit by another one on January 12th. As soon as I was feeling recovered from that, I had another one on January 28th and then again on the 31st. I stopped everything, including writing. For three weeks, I laid low and tried to reset my body. My constipation had become severe, so I had been taking massive doses of various different kinds of magnesium and I was afraid this was contributing to the episodes because there always seems to be some sort of bowel inflammation component involved (I get aches and what feels like electric pins and needles in my bowels and my flanks when I’m very constipated). When I quit magnesium, the constipation became critical — and a bit comical with the size of my protruding belly. I’m so uncomfortable, I wake up in the night when I roll over onto the poop baby inside of me. Where do the other organs go? I’m not sure how I continue to eat and I’m not sure why I continue to eat. You’d think at some stage I would just give my gut a break and eat liquid food, but I’m always hungry. I tried Triphala, Gentian, Medibulk, digestive enzymes, massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. So, tonight I’ll be taking the generic polyethylene glycol (Miralax/Movical) that I have been avoiding because, if it’s too harsh, it’ll trigger a vasovagal reaction and I could pass out or, if it’s mild cramping, it’ll keep me up in the night. Not to mention it’s a nasty drug and probably made in China. But enough about that…

My father was visiting when the suppository episode happened and, a few days after he left, my mother came. That’s it from Christmas until now. That is my 2015. One quarter of a year summed up: reaction-recovery-reaction-recovery-reaction-recovery-reaction-recovery-visitor-visitor. Thank god for the visitors because the rest is really depressing. My friend M recently said that he fears not seeing those he loves ever again and, as we get older, that concern becomes more and more pressing. I think this all the time with my parents living so far away. Their visits allowed me to breathe easier. They filled me up with sustenance and gave me a little more mettle to carry on. I am incredibly lucky to have such a supportive and loving family. Recently, Jen Brea asked the ME community to post the most compassionate word or giving act ever received in relation to our illness (a very moving thread) and all I could think was, my family, my siblings, my parents, my best friends… their messages, words of encouragement, interest in learning about ME, physical help, monetary help, emotional help… Where would I be without them?

Both visits were wonderful and were needed more than I realised. My mother helped me with a hundred tasks I haven’t been able to accomplish and I got to hear all about my brothers and nieces and nephews, whom she had just visited. We managed to drive to the beach dog park twice: first, with my father and sister and, again, with my mother. It has been glorious weather in Seattle and getting out of the house is always the highlight of my months.

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Yay! Beach!

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Damn, he’s a fine looking dog. ❤

The one downside was, my husband wasn’t with us the first time, so I was without his deafening whistle and another set of eyes on our smaller dog, Riley, the escape artist. He ran around the rocks at the edge of the park and took off, causing me to expend more energy than I have in many months. I stood calling at the top of my lungs, over and over, “RILEY, COME!” and then started to panic when he didn’t reappear. At the top of my lungs and panic are not things that go well with ME. My voice is not strong, but, man, when my child went missing, nothing was going to stop me yelling for him. This is a dog that is only ours because he ran away from some other home and was found in a house barn, emaciated and unable to stand up. He’s an adventurer and curious about everything, while Bowie sticks to me like glue.

When Riley finally came into view, he was up in the car park and I sprinted up the sand embankment to the fence. Sprinted and up don’t happen in my world, either. Riley looked scared. He couldn’t tell where my voice was coming from and I was worried he’d run in front of a car or disappear, never to be found. He was tearing back and forth outside the park and I was calling over and over. He finally found me and I grabbed the scruff of his neck through the fence and sat down in the sand, waiting for rescue. My 72-year old Dad clambered up the rocks (cutting his shins in the process) and got Riley on a leash. I was half catatonic on the way home, like a rag with all the water twisted out of it. I crawled to bed, but, once again, bounced back quicker than I anticipated. And it was worth it. Mount Rainier on the drive home, through my glazed eyeballs, was spectacular. My Dad said it looked like a painting of Mount Fuji.

So, what else can I tell you about the last 3 or 4 months? I haven’t really taken any supplements this whole year so far. A few here and there, but, after every big episode, I would stop everything and go back to baseline. In the last week, I have been taking trace minerals, Vitamin D, K2 and fish oil again. I’m also still on topical DHEA and progesterone and just added topical pregnenolone and I’m about to add oral progesterone. It makes me nervous using bioidentical hormones, but they don’t seem to cause a reaction and both of my NDs recommend them, so I’m going with it. Apparently, there is evidence that DHEA+pregnenolone can reduce reactivity, so the goal is to take those for a while, then try IV fluids, then try sub-cutaneous IG and maybe even make my way to IVIG one day. I’ve been trying to get there since seeing Dr. Chia 7 months ago, so who knows how long it’ll take. I’m also still on the compounded thyroid hormones. All these compounded meds are costing me a fortune, though, and are not covered by insurance. One of these days, I’ll have to call this experiment quits and go back to my generic, dye-filled, filler-filled drugs. That’s it for what I’m taking. The Equilibrant, Nystatin, Hydroxyzine, Tramadol and Singulair are all languishing in the cupboard, unopened.

I had a few blood tests done in January. The big shock is that my cholesterol is sky high. Total cholesterol is 310, LDL is 194, Apo B is 124 (ideally <109) and LDL-P (particles) is 1755 (ideally <1000). There could be many reasons for this: my continuing low thyroid, my chronic and reactivated infections (coxsackie, HHV6, EBV, varicella, candida, mycoplasma pneumoniae), leaky gut and inflammation, genetics (both of my parents have high cholesterol) or something to do with my insulin/hypoglycemia issues. But, I actually think it is mostly to do with my diet. Over a year ago, I started an elimination diet for autoimmune conditions (AIP), plus cut out most high-histamine foods (fish, shellfish and avocado etc.). I cut out oats (I had already eliminated all other grains except rice), legumes, nuts and seeds, but continued to eat white rice (and rice cakes, rice pasta etc.). After about 4 months, I began eating a lot of ghee, butter and bone broth. I had my cholesterol checked in 2013 and it was fine, as it had been my whole life. In mid-2014, it had started to crawl up and, 9 months later, it’s now a pretty big problem. I’m pretty sure it was my inadvertent reduction in soluble and insoluble fiber (especially the former), plus the changes in the type of fat I was eating that caused the lipid problem.

Other January blood tests of note: low DHEA and testosterone (still), low insulin, high homocysteine (still) and my T3 and T4 are low (STILL). Don’t tell Dr. Erin, but I’m going to increase my liothyronine myself because these teeny incremental changes are just taking too long to fix my levels. Nothing seems to get better and more abnormalities keep emerging.

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I’m averaging about 1,400 steps a day and 6 hours sleep a night. When I do sleep, my sleep has been better. I just put it together now that this might be because of the progesterone supplementation, which is meant to help restful sleep. Wow, I finally made a correlation. I still can’t wear the CPAP without all hell breaking lose and the oral appliance still wrecks my jaw, but I’m managing to get a solid 5 hours most nights, with another 1-3 tossy turny hours. I have my third sleep study tomorrow to see if the OA is helping the apnea at all. My other sleep issues (pain, night terrors, constant movement and muscle spasms, awakenings post-REM sleep) are still unresolved since I haven’t been able to tolerate the drugs offered.

My headaches have also been a bit better, maybe because I backed off the salt ever so slightly. I get doozies a few times a week, but I noticed that I didn’t really have a headache the whole time my father was here. My salt loading wasn’t helping my blood pressure at all, so I might need to be medicated.

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My throat spot hasn’t been itchy in a while and I think the electric shocks in my left leg have been fewer and farther between.

I stopped using the Restasis after 4 months to see if I noticed any difference and I think my eyes have been worse since stopping, but I don’t know if they’re worse enough to justify a Rx.

Sore glands in my neck, crazy tinnitus, swollen sinuses are all continuous low-key issues lately. I started taking 5-6ml of liquid Zyrtec again a few weeks ago on a whim in case anything was seasonal allergy-related. As usual, I can’t really tell anything positive or negative.

My blood sugar seems better. This could be because I’ve diversified my diet (added back many nuts, seeds, oats, goat cheese, milk, potato, corn, chickpeas) and it also helps that my new endocrinologist explained that the danger lies more in how fast my blood sugar is dropping than how low it is. This was great to hear because I have experienced those sugar crashes where it can wind up in the 40s, but I was always nervous, if, when I was going to sleep, it was 73 or something, that it would continue to plummet in the night. She reassured me that, if I don’t feel the tell-tale shakes, it’s probably ok and I don’t need to eat. Having said all that, I got out of bed this morning needing to eat right away because I was shaky and it was 63, so it’s still a delicate dance. [<~ And, after I wrote that, I had a big blood sugar crash on my way out the door to PT because I didn’t eat meat for breakfast. I had to go back inside and cook a mound of lamb and a yuca cake and eat it in the car on the way there. I was 15 minutes late. I guess hypoglycemia isn’t really any better. Gah!]

My buzzy brain and neuro symptoms are definitely still here, always incapacitating when they hit, always signalling that I need to go to bed and power down. And I’m still stiff, inflexible, pulling muscles regularly, in some pain and pretty weak. My lower back has been a major issue recently and my husband bought me a back brace that I have to wear when I’m standing in the kitchen or I’m crippled.

My mood is fine unless I’m really sick or in a lot of pain and then I’m a scared, desperate caged animal, feeling like I can’t go on another minute. When I’m really sick in bed, feeling fluish, poisoned, inflamed and broken, the dark mental cloud descends and obliterates all hope and even the very rational thought that this will ease up. I don’t forget that it has eased up in the past – seemingly, it would be easy to reassure myself that it will again, but I can’t. It’s the knowledge that I couldn’t continue living if it didn’t ease up that causes the black blanket of fear.

But enough about that…

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The last time I was out on the scooter.

The bad news is, my scooter died at the end of December. It was my one lifeline to freedom and, although I only got out on it for about an hour each month, I lived for that hour. So, I have to figure out a way to get another. The best case scenario would be one that I could lift into my car myself. The cemetery is only a few blocks away and, ideally, I’d like to go for little outings without needing my husband and his truck, since he’s not home very much. I’m also thinking about the future when I have a smaller dog and will, I hope, have the strength to walk him on a leash using the scooter. Not sure there are any scooters that disassemble to light enough parts or that I would have the energy to put in the car, drive, take out and assemble, ride around for a bit, take apart and put back in the car, drive home, take out of the car again… Now that I see that in print, it seems a Herculean and impossible task. Plus, we can’t really afford one, anyway, when we spend more than we bring in every month. When we win the lotto, we can buy a scooter and a transport van that it can drive into. Or maybe I’ll just get better.

The good news is, everything is blooming and the smells in the garden are incredible. 🙂

This took me over a week to write, so apologies if it’s disjointed. Until next time… XO

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Can I get a witness?

I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.

I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.

I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.

My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.

To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤

Title credit.

Mast Cell Madness.

I’m officially terrified by my mast cells because Christmas heralded another sick, sick few days. Almost as sick as Thanksgiving, so I’d have to say the 2nd sickest night of my life. However, this time, it all started with my tongue swelling up, which gave me more insight into the mechanism behind it.

I sometimes wonder if all my health issues stem from mast cell activation syndrome. I can tell the difference between ME symptoms and mast cell reactions, but, still, there’s this little seed in my brain that says, what if they’re at the root of EVERYTHING and I should be spending my time finding a doctor with MCAD expertise on this side of the country (it doesn’t seem to exist in Seattle)? I don’t do this because I am generally stable. On a day-to-day basis, I’m not having reactions — unless, of course, many of my chronic symptoms have mast cell degranulation at their core and I just don’t realise it.

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My health issues started with full-blown anaphylaxis, out of the blue, 9 days after my 28th birthday. Doctors were hopeless and gave no advice back then, not even daily preventative antihistamines. The common denominator was alcohol (but not every time I drank, so it was confusing), so, after the last trip to the emergency room in Dublin, where I almost died, I finally quit drinking and haven’t touched a drop in 13 years.

Before that, I had swelling in my eyes and hands and a severe edema episode once or twice that I didn’t really think much about. I linked it to Asian food, so stopped eating that and MSG and didn’t look any further into it. This was eventually diagnosed as autoimmune urticaria and angioedema and I was told to take Zyrtec, but didn’t want to medicate daily for an intermittent condition.

I’ve always had trouble with my periods — crippling dysmenorrhea — but they got progressively worse until I collapsed with syncope and shock 13 days after my 32nd birthday and was taken off in the ambulance. For 6 years, no doctor gave me any advice until, finally, an OBGYN told me to dump salt on my tongue. This doesn’t stop the collapses, but it certainly helps. These episodes continue to happen randomly to this day, always on the first day of my period and are, without a doubt, mast cell mediated, presumably low-grade anaphylaxis (very low blood pressure and pulse, bowel problems, syncope, shortness of breath).

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I have a spot in my throat that has itched for years. It was actually the thing that lead to diagnosis of my toxic thyroid goiters and Grave’s Disease because I mentioned the itch to some random doctor who palpated my throat. I’ve now realised it signals reactivity in my body at a very low level. It’s almost always there, but, when it’s not or when it’s very bad, I pay attention.

I was flushing badly for years, thinking I had developed bizarre self-consciousness, but the self-consciousness was actually a result from flushing and having people point it out! When I was diagnosed with Grave’s, I thought it was a symptom of that, but it never went away after ablation.

Of course, in retrospect, there have always been issues I have dealt with, which may or may not originate with mast cells: thyroid problems and Raynaud’s can be a result of mast cell disorders. Also, constipation, headaches, low blood pressure, and temperature sensitivity (all of which got much worse in recent years). Finally, many of my ME symptoms could also be from MCAS: fatigue, joint and tissue pain, eye pain, vision problems, vertigo, episodes of low body temperature, scent/odour/chemical sensitivity, sinus problems, cognitive impairment, hair loss, decreased bone density (I have osteopenia, on the cusp of osteoporosis), shortness of breath, medication reactions, malabsorption, and tinnitus. See a list of signs and symptoms here.

It would be wonderful to be able to manage and control any of these issues, but none of them scares me like the nights I’ve had recently, not even full-blown anaphylaxis. I’ve tried so hard to figure out my triggers, but they are moving targets. Tongue swelling and angioedema are obvious, as is the very specific breathing difficulty you get with anaphylaxis (it is nothing like asthma or wheezing from an infection). I don’t get daily hives and itching like many people. My reactions now are all about the histamine bucket and completely dependent on where I am in my cycle and what is happening in my life. I may be able to eat anything one week and then suspect that those same foods are giving me sinus trouble, insomnia and a jaw ache a different week. My chronic daily headaches, tinnitus, brain fog and exhaustion could be from food choices, but I’ve never been able to pin down any causation. My diet is very low-histamine compared to normal people and how it used to be, but I still allow myself chocolate, coconut, store-bought chips, beef, almost all fruit, including dried and many things that others avoid. Could these things be contributing to my problems? Yes, but, without a definite correlation, I don’t want to eliminate foods. Once you’ve experienced anaphylaxis, “reactions” like a runny nose, constipation or aching hands are quite ignorable. The only thing that consistently caused a reaction was alcohol and my periods. And, now I can say with certainty, holidays and events, no matter how careful I am.

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I prepared for Christmas over the course of a month and a half, slowly bought presents and wrapped them, slowly wrote some Christmas cards, slowly got the spare room ready for my sister, slowly did laundry — over the course of weeks! Didn’t overexert myself at all. There was no excitement, no activities. My sister and her small dog came over, we watched tv and opened presents. I had rested multiple times throughout the day and the only not normal thing I ate was half a tiny piece of fresh King salmon, which had been brought in off the docks that same morning and, I was told, caught the day before.

My tongue started to swell up after dinner. By the late evening, I had gotten upset for really no good reason (which has historically happened with my mast cell reactions) and was flushing. I had a bad reaction to about 15mg of Benadryl a week or two prior, so I was scared to take a decent dose on this night. I bit a dye-free capsule and put a drop on my swollen tongue and went to bed. At 2am, I awoke with the same evil that I experienced on Thanksgiving and the night after starting Cromolyn (before going to the AirBnb rentals back in September — it was a few days before my period that time, too). I was shaking so badly, I couldn’t lift the water glass, I was drenched in sweat and had weird runaway chills coursing through my body. I crawled on my hands and knees to the bathroom, which scared the shit out of me because, through all the worst of ME, that’s only happened once before. I fell into harrowing nightmares and woke up gasping for breath over and over, feeling poisoned and infected. I dreamt that I was sick and dying and my husband wasn’t paying attention or taking it seriously. I dreamt that I was sick and dying and my mother laughed at me (this isn’t remotely based in truth, this is my terrified mind not knowing how or where to get help). I dreamt that my dog’s neck was broken and I was carrying him to get help, but I was sick and dying and couldn’t do it. And, finally, I dreamt that I was lying on the floor begging my husband over and over: “Please kill me. Please kill me. Please kill me.” I woke up sobbing and so wrung out.

That morning, my period came 5 days early. You better believe, if I had known my period was going to arrive Christmas Day, I might have cancelled Christmas. Or at least postponed present opening for a day. And definitely not eaten even the freshest salmon.

In the past, my anaphylaxis episodes went like this:
My friend A’s birthday party.
My friend C’s birthday party.
Oktoberfest.
Easter party.
C used to joke that I was allergic to fun. I can’t believe he was right. I collapsed and had the paramedics called twice while my mother was staying with us and, also, when my best friend was here from Ireland — both were “events”. I started to get paranoid that, psychologically, I was somehow causing my system to crash when there were visitors. But, every single one of these times, I had my period. There were only a few anaphylactic episodes that I can remember when it wasn’t the first day of my menstrual cycle. EVENT + MENSTRUATION = MAST CELL MELTDOWN. But I think I only really and truly started to believe this 100% on Christmas.

So, Christmas day is a total haze. I crawled downstairs a few times to eat and try to put on a good face, but I don’t remember much and dozed most of the day. Like Thanksgiving and September, however, I bounced back quicker than I could have ever anticipated. That night I kept marveling, “How am I speaking? How am I sitting up? How am I alive?” When it’s bad, you honestly want to die. When it ebbs, the human spirit kicks back in shockingly quickly and you just get on with it, until the next time when you are surprised anew at just how bad the bad is. I didn’t even really modify my diet. I continued to eat my almond butter, coconut ice cream and drink bone broth and tea (all high-ish histamine). If anything, I felt more, Oh fuck it, how much worse could it be? At this stage, I’m much more scared of menstruation and engaging in any sort of event — even one in my house, in my pajamas, with only a single guest.

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I am currently putting together an informational kit (in a bag that was donated to me by a member of one of my groups), so my husband has something to grab in the event of an emergency. My dilemma is that I’ve managed to avoid drugs all this time (never had to use my EpiPen), so I have no way to premedicate for things like plane flights, dental work or necessary procedures like a CT scan or colonoscopy (which my doctor has wanted me to get for years, but I refuse because I’m worried about reactions). I have no safe protocol. 13 years ago, I got IV diphenhydromine for anaphylaxis, now I react to 15mg of Benadryl! 5 years ago, I had IV morphine for dysmennorhea, now my breathing shuts down with a crumb of hydrocodone or codeine. What would happen in a real emergency? If I need surgery? Knock on wood, toba toba, ptooey, ptooey. Once I have everything compiled, I will post it here.

Having said all that, I’m really in quite a good place, feeling happy and hopeful about the new year. Maybe because I realise that these reactions are mast cell degranulations and not ME relapses and that takes some of the fear away. Somehow dying from anaphylaxis is less scary than becoming permanently bedbound with ME. Perhaps only people with both illnesses will understand that. So, here’s what I did New Year’s Eve:

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As well as resilience, forgiveness, positivity and optimism, I’d also like to request that 2015 doles out truckloads of health, wealth and happiness to all of us. That’s all. That’s not too much to ask, right? 🙂

A Sudden Illness by Laura Hillenbrand

With the publication of the excellent article in the New York Times Magazine last week, The Unbreakable Laura Hillenbrand, I just noticed that trending stats on my blog show many searches for her harrowing and moving account of the onset of her ME (CFS in the article), A Sudden Illness. I also noticed that the links I posted a few years ago for that article, which was originally in The New Yorker, were no longer working (and you have to pay to access the archives). So, here is a .pdf file of her article: A_Sudden_Illness.

I really want to feed the public’s curiosity about her journey and this illness while the NY Times article is still featured on their site (currently in the Health section and #4 on the Most Emailed list). Please feel free to share this post so we can educate while people are curious around the marketing of the film, Unbroken.

After reading the NY Times article, a few things stuck with me: she separated from her husband, which is heartbreaking, yet, sadly, understandable; she can walk down a street, go up and down stairs, do yoga; she has gotten much better and had horrific relapses; she still suffers constant vertigo and hasn’t gone insane; she is taking “new drugs” (what new drugs??)… and some of the workarounds we have to do to accommodate this illness can lead to a richer experience.

Another thing that stayed with me: her first editor said, after 25 years, “the first draft of ‘Seabiscuit’ is still the best he has ever received.” Damn, imagine being that writer. Would be a dream come true for me to publish a book, let alone have it touch millions.

There have been other interviews with her, but I’ve never seen one as thorough as this one by Wil Hylton. Hillenbrand said on Facebook, “I am so moved and grateful. Thank you, Wil, and to everyone who was interviewed for the piece. I can’t express how stirred I am by this.”

The New Yorker listed A Sudden Illness as one of the top ten most requested articles from 1999 to 2009, which speaks to the legions of sufferers looking for any information and first-hand accounts of onset. I know I was and that article changed the way I viewed my illness — it was at once comforting and totally terrifying, it both inspired me and left me hopeless. Mostly, it was validating.

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I listened to Seabiscuit while driving my brother’s Isuzu Trooper from Knoxville, Tennessee to Durham, North Carolina to New York City. It was the first book I’d ever listened to on tape. I rented it from a Cracker Barrel (a restaurant chain, dotted along highways, that rents books from one location and allows you to return them to another) and it will always be inexorably linked to that road trip during an exhilarating summer. I’d had my first scary health incident a few weeks earlier — a two month headache that called for a lumbar puncture, which landed me in the emergency room the next morning with the worst pain I’ve ever experienced in my life. I wasn’t told to stay lying down after the procedure and my cerebral spinal fluid was seeping through the puncture wound that never healed. But, when I drove to New York soon after, I was a woman unleashed and vibrant, soaring with that new gratitude you can only get from a scary hospital visit. I had no schedule, no job, some money saved and Seabiscuit was my travel companion. We parted ways just as I was driving into Manhattan on a hot August night, wearing a skimpy sun dress and chunky sandals. All the windows were down and I was enveloped in those pungent NY smells and frenetic lights and noise: They fed me like life force. I had never heard of ME and I had no idea that one day, like the author of the book I just listened to, I would be housebound and forced to listen to books rather than read them… That evening, driving on the open road and then jumping out of the jeep to hug my best friend from college in the middle of the shimmering heat of Manhattan, might have been the most alive I’ve ever felt.

And then there’s Unbroken. If you’re one of the few I haven’t told to read it, I’m telling you now: Read it. Don’t go see the movie instead. Interestingly, while my husband was shopping in a Torrance, California Whole Foods the day before I went to see Dr. Chia and the first time leaving Seattle in two years, there was a public memorial service being held to celebrate Louis Zamperini’s life a few blocks away. Funny how things come back around like that.

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By the time he returned to check on me, I was sweating profusely and chills were running over me in waves. He took my hand and was horrified: it was gray and cold, and the veins had vanished. He spread blankets over me and tried to help me drink a glass of milk. I couldn’t sit up, so he cupped my head in his hand and tipped the milk into my mouth sideways. It ran down my cheek and pooled on the pillow. My teeth chattered so much that I couldn’t speak. Borden called an emergency room. The nurse thought that I was in shock and urged him to rush me in. But we were far from the hospital, and doctors had never been able to help. I was sure that being moved would kill me.

— From A Sudden Illness
I have been there so many times.