First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

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Long Overdue Update

I think it’s time to write an update. I haven’t wanted to neglect my blog — in fact, I wake up daily thinking about things I’d like to document and share — but I’ve somehow been very busy for what feels like years. My energy is still so limited and, with each incremental increase in functioning, I want to take some of the burden off my husband by cooking my own food, getting myself to appointments or taking care of our dog. It leaves no space for writing. I hesitate to say “no time for writing” because, even as a sick person — even as the person in question — I think, “you have nothing but time!” But I don’t, my window of functionality is still so small. There were months in the past when I worked 70 hours a week and I somehow still had the time to accomplish more than I do now — because my internal engine worked efficiently and my tank held much more gas and was easily refilled overnight. I can imagine my healthy friends reading this and wondering how someone with no job, no kids and no social engagements can possibly feel like they don’t have time to write an update. Maybe, if I manage to complete this blog post, it’ll be clearer.

These last few years, I have put great effort into trying to be an easier human to be around, trying to act like my old self for my husband and when I see people — you know, trying to be one of those “it’s great the way she stays positive and keeps fighting while dealing with such suffering” kind of people. But when you only post the good moments on Facebook and you draw from deep reserves while talking to people to appear perky and mildly engaging, it can cause… confusion, for lack of a better word. Even my closest friends and family obviously can’t see on the outside of me what I assume must be alarmingly salient and sometimes I get concerned that maybe, deep down, they think I’m just living the good life while my husband slogs away at his very physically-demanding job. They have made comments that make me think I’ve never done a good job of explaining this disease and, in fact, sometimes their loving and well-meaning encouragement sounds like they think I need the courage to get out into the world.

There are certain things that take courage in my life– they are all mast cell threats. It takes courage for me to go to places where there are no easily-accessible emergency rooms, like Vashon Island, where our friends live, or in an airplane. It takes courage to try a new medication, knowing I could have a reaction. My experiences with full-blown anaphylaxis and nocturnal mast cell meltdowns have made me fearful of a lot in life — not only of things I’ve reacted to, but typical triggers that have never caused me problems because I always wonder if they’re filling my “bucket” and the reaction is looming behind a blind bend in the road. For example, I may think I can eat just about anything and I love hot weather, but most mast cell patients can’t and don’t. So, maybe a few family members come over on the 4th of July and my period is due (“events” can cause reactions for me, as does menstruation). I’m basking in the sun and I’ve eaten a banana, some cheese, some chocolate that day (typical foods that cause reactions for others). Then the fireworks start and my dogs go into paroxysms of panic, which causes me distress (emotions can degranulate mast cells) and, just like that, the bucket overflows and my tongue swells up and I’m in for a very scary, sleepless night. I think it’s just from hormones and excitement, but maybe without the sunbathing or the chocolate, it wouldn’t have happened, who knows? I’ve been blindsided by this sort of thing too often and it seems, no matter how much time goes by, there will always be a tad bit of trepidation lurking in the back of my mind when navigating the minefield of mast cell degranulation.

So, some things do take courage, yes, but living, doing, experiencing, independence — all the things that ME/cfs took from me — they take no courage at all, they just need a functioning body. My greatest desire is to be traveling or socialising or hiking with my dog. If I was suddenly healed tomorrow, all of your phones would be ringing off their hooks and I’d be asking to crash on your couches as I hopped from Seattle to Oregon to California to Wisconsin to Tennessee to New York to Connecticut to Ireland to England to Germany and hugged you all close and talked your ears off for months on end. If anything, I need to be urged to pull back and conserve my energy because I am my own worst enemy, suffering payback on a daily basis from some reckless endeavor like cutting a thick-skinned squash or shaving my legs. Yesterday, I took Riley and my sister-in-law’s dog on a walk, using my mobility scooter. When I used to take Bowie out, it took very little strength and energy: He could be off-leash, I’d sit on the scooter and watch him eat grass or motor beside him as he ambled along. But these two pups are runners, pullers, criss-crossers and leash-tanglers. Not only did our hour walk sap the majority of my energy yesterday, today I am in pain from head to coccyx from using muscles that I usually don’t. But it brings me such joy, of course, so I’ll do it again.

For about four months this year — mid-April to mid-August — I was probably better than I’ve been since getting sick. But, when my Mum visited last March she said it was the sickest she’d ever seen me. It wasn’t — I think she has forgotten some of the horrors of the early years — but that illustrates just how changeable my health can be in a 6-month period. In general, if I keep my activity steady, I can predict how my days will go. That doesn’t mean I can control how severe my symptoms are, it just means that the worse I get, the less I do each day and vice versa and, if I’m careful, this will usually even out to a higher or lower baseline. In the beginning of my chronic illness, the freefall didn’t slow until I stopped working, then stopped going out of the house and eventually spent most of my time in bed. Slowly, slowly thereafter, my days became more predictable and then, even slower than that, my limits expanded, millimeter by millimeter.

Besides managing my activity, I think the only other thing that has contributed to my improvements are immunoglobulin infusions, which I’ve been doing for three years. But, like I said, I was much sicker last winter while still doing infusions, so you can always assume that those two steps forward will be followed by one step back. Just as long as there is a net profit at the end of the year, I’m content. Not happy or at peace, but I’ll take it.

Anyway, on to the actual update. But I’m wiped now, so to be continued…

A LOVE LETTER TO MY FRIENDS… By Lindsay

See this here? <– It’s a blog post I wrote in November, 2012 which my friend Lindsay liked. Lindsay writes Musings of a Dysautonomiac and I don’t even know how she found my blog. That was in its infancy, when I was just venting to the universe because I didn’t know what else to do with myself, before I even knew what dysautonomia was. That’s 5 years of her friendship and, like so many others I’ve met through this blog and its associated Facebook account, I treasure our relationship. I rely on her/their humour, honesty and nonjudgmental support. She wrote a love letter to her friends and expressed everything I feel better than I could have, so I’m sharing it here. And, in case you’re too lazy to click on the link, I will copy it below.

A LOVE LETTER TO MY FRIENDS…

Growing up, most of my friends were boys. I was into riding bikes and playing video games, and most other girls were not. As I entered my teens and 20’s my closest friends were female, but the majority of my friends were still males. Generally, I always felt that I got along better with men.

While that’s probably true, as I entered my 30’s I began to realize that I get along best with kind, brilliant, funny, drama-free women. In short, You.

Yes, you, reading this. YOU. (Apologies to the, like, 4 men who read this blog. I think you’re swell, too).

I have lost friends since I first became sick. Some were “party” friends, who didn’t have much use for me after I stopped going out as often, and some were needy friends who didn’t like that I now had problems of my own to solve. Some were just friends, and I don’t know why. I usually lose a “friend” or two everytime I post something about postural orthostatic tachycardia syndrome (POTS), dysautonomia, mast cell (MCAD), or chronic illness in general, on Facebook, which I do about twice a year. Apparently I’m not allowed to post occasionally about a lifelong life-altering illness, but am expected to “like” the 5 posts about a friend’s kid who has the flu.

I have gained friends, too, through support groups and this blog. Some live in my city, and others live in other states and countries spread throughout the world, friends who I have never, and unfortunately due to our illnesses probably will never meet in person. There’s a kinship in mutual suffering; we fight different battles in the same war. I save every email I have received through this blog. That perfect strangers share their fears, their vulnerabilities, their hopes, and their stories with me is incredibly humbling. We are unlikely friends, brought together by circumstance, but held together by compassion and understanding.

A friend recently got married, and while we were discussing the wedding plans over a drink, she asked what she could do to make it easier for me to attend. At that wedding, friends sat and stared at the ocean for over an hour with me, as I was moving pretty slow after three migraine days that week. For my birthday last week, chronically ill friends whom I have never met sent birthday messages. And not just “hey, happy birthday” messages, but touching messages that remind me that, although we have never been face to face, I have still been seen.

Chronic illness is hard on friendships. As a whole, we aren’t the most reliable bunch. We get sick and miss important events, even after promising we’d be there. Due to brain fog, we may forget important details you have told us. We probably aren’t going to join you for a hike, or a late night party, or skydiving, or standing in line at the grocery store. You’ll have to help us, from time to time. We may not make the best bridesmaids, godmothers to your kids, or workout partners. Somedays, we may not even make that great of a friend.

But I promise you this: we will never take you for granted. Because we know what it’s like to be left behind.

Friends, thank you for letting me share my life with you here. For letting me be this confused, existential mess, and for responding with softness and acceptance and dirty jokes and “we’ll figure this out togethers”. For remaining my friend through it all, or for sending me an email through this blog and planting the seeds of friendship.

I will continue to strive to be worthy of your friendship.

“In the end, all you have are memories, and usually the ones you have with friends are the ones you treasure most.” – Notes from the Universe

Smell ya later.
Linds

Believe it or not, an update!

I have so much to write about, so much to catch people up on and document, but the longer I go without posting, the harder it feels to break the dry spell. Each month, I think, “Write that in a blog post, you’ll want to remember that,” but I never feel like I can “waste” the time. Especially in the last 6 months. If you’re friends with me on Facebook, you know that I have lost all available energy for months to fighting horrific healthcare battles. Energy that could have been put towards conversations with loved ones, time playing with my dogs, reading or writing…

So here’s a recap: From November, 2015 to around August, 2016 I was slowly getting stronger from my immunoglobulin infusions. I estimated that they brought me up from about 15% of normal functioning to about 20%. That 33% increase was miraculous. It didn’t exactly change the way I lived my life (I still had the same symptoms, was still mostly housebound, still had to manage energy carefully), but it changed my control — things became predictable, which reduced fear and let me branch out. Payback was shorter, not as scary, I could do more and knew I wouldn’t make myself permanently worse. That last point was life-changing for me. For 4 years, it felt like anything I did made me worse, I was desperate to hold on to the functioning I had and couldn’t take many chances without being forced down a notch — and I was always so scared that the new lower notch would be forever.

So, last year we went to the Washington coast for 5 days and I didn’t feel terrible. I had two friends visit me at my house and we talked for hours and I was okay. My family came to Seattle for their annual vacation (2 brothers, sister, mother, spouses and 7 nieces and nephews) and I was able to go to their rental house 4 days in a row for extended visits. This was the turning point, though, I think. I left it all on the stage those 4 days with my family. Friends with chronic illness, you know what I mean — it’s such a difficult act to appear normal and, from what I’m told, I gave a great performance that long weekend. Each day I came home and literally crawled on all fours to my bed. I lost 3 pounds in 4 days because between each visit all I could do is lie in bed and hope for a enough recovery to try it again. There wasn’t a moment that the payback wasn’t worth the incredible time I spent with my family. I’ll have to write a whole blog post on it one day. My nieces and nephews are everything you want kids to be — sweet, kind, honest, inquisitive, funny. No bratty-ness, no meltdowns, no selfishness. My brothers are doing something right.

Right after that visit, in August of last year, I started to nosedive. I had an increase in migraines, sore throats, exhaustion, muscle pain, unstable blood pressure. I was trying out (very expensive) hyperbaric oxygen treatments at the time and thought they were either causing or exacerbating my symptoms, so I stopped those, but continued to go downhill. In November, I started the descent into health insurance hell that lasted about 4 months. I’m not going to get into it right now. There’s too much to tell and it’ll make me shake and cry angry tears as I type, which I’m not up for. Suffice it to say it is an evil, vindictive, nonsensical, black hole of a system and nobody has accurate information about anything when it comes to healthcare for people under 65 on disability. And, even if they do have the knowledge, it seems the vast majority of health-related representatives (or is it all humans? I’m guessing it is) are inept, lazy, selfish and genuinely couldn’t care less about helping someone in need. My friend Michael had one of these phone calls where he wound up saying, “How do you sleep at night?” to the representative who was outright lying to him. Essentially, that’s how I spent 4 months — all available energy every day dedicated to battling my brain symptoms so I could continue to micromanage every person who held my health in their hands, taking copious notes and making enemies, as I waded through the morass of phone transfers, misinformation, hours of stuttering hold muzak, false promises about call backs and looming deadlines… While thinking, how do they live with themselves? Not to mention incompetent, petulant doctors that I need so I can’t I leave them.

When my mother came to visit after Christmas, she said it might have been the sickest she had ever seen me. I wasn’t even close to the sickest I’ve been, but it still says something about the severity of my crash (to be fair, I had allowed myself to have one of those total meltdown, let-it-all-out, “I’m so sick of being sick” sob-fests in front of her — the kind that I usually rein in because they can make me more reactive and wipe me out — which can’t be easy for a mother to witness). My strength started to get marginally better in February. I think it might have been helped by an increase in my thyroid medication, but it was kind of a double-edged sword because I also became horribly hyperthyroid for about 3 weeks before I realised what was happening. I had also stopped going to my weekly appointments (physical therapy, myofacial, counselling etc.) and had stopped my immunoglobulin infusions because I lost insurance to cover them, so perhaps the break from obligations and weekly medications helped me gain strength.

This spring my husband, dogs and I drove to California for an appointment with Dr. Kaufman at the Open Medicine Clinic and we stayed 6 weeks for a holiday and to test how I felt in a different climate. I will write about those big events in another post. What I really came on here to document is how I’m doing now. I want to keep track of what I can manage and how bad the payback is when I indulge in social time. Last November I went out to brunch (out!) with 4 old friends (you can imagine what it meant to me to be invited). I’m pretty sure I appeared normal throughout the 2-hour meal, but payback was vicious. My calendar notes say: “very bad today, body totally shut down, in bed, shaking, crashing, crying, guts feel swollen and full of bricks, heart, muscles, eyes burning.” It lasted days. In early February, my brother was at our house for 7 hours. I spent his visit relaxed on the couch in my pjs, but we talked and laughed like normal people, animatedly, and I didn’t rest once (unheard of a few years ago). I went to bed that night flying high, so happy from our conversation, so grateful to feel fine… And then, 3 hours later, woke up in the middle of the night feeling poisoned, shaking all over. My calendar says: “severe payback, swollen throat, can barely swallow, hard to breathe, every muscle in pain, bad stiff neck and headache, shooting pain in bowels, nose stuffy and runny.” The worst of it only lasted about one and a half days.

Yesterday, we had family over for brunch to celebrate my birthday. Although the whole shindig lasted 3.5 hours, there were only about 2 hours during which everyone was here — 4 adults and a child, not that many people. My friend Z said I looked great, she was so excited by how different it was from other years. She said, “I know you’ll pay, but today was normal.” This is everything I could hope for, BUT… the big but… But, it was hard. I can power through now, I have the ability to put on an excellent performance. If my neurological symptoms stay away, I can do quite a bit physically (although standing for a long time still causes excruciating pain). So, yesterday I showered, dressed, got out plates and cutlery, made some waffles and chatted with my family. That’s about all I did before things got difficult. There’s this weird thing that happens when you’re ill, but you’re putting on the normal act: You lose time. Or at least I do. Do any of you? For example, I remember everything about the first hour yesterday — when I was chatting with my husband and sister-in-law. Then our friends and their daughter arrived and things are a little fuzzier. I remember the conversations, but they’re not in sharp focus. Then my sister and her dog arrived, right around the time I wanted to make the waffles and apparently that’s when my mind went into … not quite “survival” mode, but “keep it together” mode: I was talking to 2 people in the kitchen while trying to focus on cooking and, although I made good waffles and I’m sure I said the appropriate things at the appropriate times during the conversations, I cant remember any of it clearly and couldn’t tell you what we talked about. Same thing while we ate — I clearly remember how delicious the food was (of course I do), but recalling things that were said is akin to trying to remember conversations I had while drunk, it’s murky, and it worries me that I was rude or unresponsive — to my favourite people, who made the effort to visit us, no less.

When I was saying goodbye to them, I could barely see. My vision was tunneled, I had a wicked headache and my brain was a buzzing scream, but being the fastidious person I am, I couldn’t not load the dishwasher. This tipped me over the edge. I was staggering around the kitchen, using immense effort to coordinate my muscles and concentrate enough to lift and place dishes. My eyes weren’t tracking properly, my heart rate was running high and my legs were burning terribly, but I just wanted to come to an end point… Stupendously stupid stupidity. I slid to the kitchen floor, panting, crying, literally unable to walk out of the room. I slurred: “Nothing is worth this. I was trying so hard to be normal, but no social time is worth this.” My husband said, “Why don’t you just be honest?” and I said, “Because THIS is honest.” On the floor, weeping is honest. He helped me to the couch, I was having a hard time sitting up, it was just utter energy depletion, muscles unable to work. I immediately fell asleep in a sort of emergency power-down. I started to feel a bit better about 5 hours later and today I’m okay besides another bad headache and stiff neck. That’s the difference now — when it hits, it hits hard and scares the bejeesus out of me, but it doesn’t last long. So I take it back, it was worth it. I ate decadent food in the warm sun in our beautiful garden with some of my favourite people on the planet (and to Z’s credit, she tried to stop me from over-exerting myself over and over and I bullheadedly kept telling her, “No, I want to do this! I’m fine!”). But of course it was worth it and I’ll keep trying to make this life have more life in it and repeat to myself during the scary times: this, too, shall pass.

Hyperthyroidism

goiters

After dealing with thyroid disease for almost 9 years, I finally, for the first time, can definitively identify the symptoms that are coming from being hyperthyroid. When they found the goiters on my thyroid and diagnosed me with Graves Disease, I didn’t know my very overactive thyroid was doing anything to my body. Unlike these stories you hear (like Dr. Amy Myers‘s), I was not telling an unbelieving doctor that there was something wrong with me. Quite the opposite. I had multiple doctors see my test results and look at me, perplexed: “You haven’t been shaking, anxious, losing weight? Have you been losing hair or had temperature problems?” Nope, nope, nope. I had been hyperthyroid for so long that I just thought of myself as someone who had thin hair and could eat a lot. Everything else I chalked up to my high-stress job: I was “type A”, I didn’t sleep well because I had a lot on my mind. I wasn’t anxious, I was BUSY. Give me the radioactive iodine already and let me get back to work!

A few weeks ago, I started getting very stressed out about my upcoming trip to California. So much to plan, rentals to find, plane tickets to buy, packing lists to make, food to prepare and freeze, prescriptions to fill. And for the doctor I’ll be seeing, I have to write my history, years of tests to sort, scan and email, release of records forms to ten different clinics… Of course I was feeling overwhelmed–especially with finding places to stay since every day that I didn’t make a decision, more options would disappear. My sleep had (has) gone to hell, I’m waking up with a sore jaw from grinding and my teeth feel unstable. I keep telling my husband, “There’s too much to do. I can’t breath, my heart is racing, I feel like I’m going to have a stress-heart attack.” I lie down to rest and my mind … my god, it just races and my body feels full of electricity. I give up, come downstairs and speed talk at my husband. The other night he asked me, “How do you have so much energy right now, you didn’t sleep at all?” And I said, “It’s not energy, it’s adrenaline, it’s stress. Once the trip is sorted, this will stop.” That was my explanation.

I lost a little bit of weight and thought it was because I cut back on eating so many nuts. But I’m eating more in general: one minute I’m complaining about how full and uncomfortable I am and, five minutes later, I’m back in the kitchen looking for snacks. I said to my friend, “I’m stress-eating.” That was my excuse. I said to my Mom, “My hair has started to fall out again and it never even grew back from before.” In my mind, I was blaming the hair loss on weight loss, even though I’m only down a few pounds. That makes no sense! Such a small amount of weight loss hasn’t caused hair loss, your thyroid has caused both, you myopic fool.

A week or two before I started to notice all of this, I had increased my thyroid medication from 100ug to 125ug a day. I’ve changed my dose so many times over the years, I don’t give it a second thought. I certainly don’t monitor my body’s reactions because I am an expert at ignoring the signs, even when they’re not subtle. Just like when I was a workaholic and feeling these same physical symptoms, but thought they were just from job pressure.

When the penny dropped (I was recently told that Americans don’t know that idiom — it means you put two and two together or the light bulb went off), that all of it is overactive thyroid, I was so excited, so soothed. And it was suddenly so very obvious. This is textbook. I’m not an anxious person, I never have been. My neuroses are canted more towards rumination and second-guessing. It’s a fine line, but this tight, breathless, buzzing, heart-hammering feeling in my chest is not normal and is awful. Such a sad thing to realise that, even after all this time, with my body yelling its head off, I blindly make excuses. I could be standing here, cold and jittery, with a handful of hair in one hand and my third sandwich in the other, saying, “Gosh, this trip planning is stressful.” It reminds me of that scene in The Man With Two Brains when he’s looking at the portrait of his dead wife and asks her to give him a sign if his new girlfriend is bad news. After the ghost turns the room upside down, Steve Martin says, “Just any kind of sign. I’ll keep on the lookout for it. Meanwhile, I’ll just put you in the closet.” I’ve been putting my body in the closet. I’m so happy to finally know without a doubt exactly what my hyperthyroid symptoms feel like and even happier to know I can fix it.

2016 Beach memories: Pictures worth 20,000 words.

Two years ago, I spent a few arduous days in L.A. with my mother and husband so I could have an appointment with Dr. Chia. Last year, we spent a few days on the Washington coast while I was very sick. We picked the closest coastal town to our house, so it was the shortest drive and my husband did all the work — I just had to get myself in and out of the car. I did it for the dogs, to see their joy on the beach, to try to make up for two and a half years of no adventures and lessened activity… but I was not in good shape.

This year, though… This year we took TWO TRIPS TO THE COAST. Again, all I had to do was pack (no easy feat — it takes me days) and get myself in the car. My angel husband, with good spirits, loads everything in and out and in and out of the car, including my mobility scooter, all my food, bedding, towels etc. I even brought my air purifier. I love being so low-maintenance.

Last June, was our longest trip since I got sick. We stayed in the same place in the same coastal town as we had in 2015, but I was feeling better than I had in years so, on the day we were meant to leave to go back to Seattle, we found a different rental and extended our visit for an extra two days. This new house was right on the beach and had a balcony. I had no idea the difference it would make to my experience. The first rental was further inland and had a fenced-in yard and trees enclosing the garden. It never occurred to me that a view might be nice — might even be soul-enlivening — I was just happy to see four different walls. But the simple act of gazing at an expanse of nature, even from inside a house, is everything when you’ve been housebound for a prolonged period. That first night, when I saw the vast black sky punctured with millions of bright stars, I started weeping. When was the last time I really saw the stars? I will never forget that moment. And the next day, sitting on the balcony, watching the waves… It didn’t even matter if I was feeling too ill to get to the beach. The funny thing was, I experienced none of that Oh-I-feel-so-much-better-near-the-ocean “locations effect” that so many people with ME report. If anything, I was taken down a notch by the wind, the marine smell, bonfire smoke at night, trying to manage my temperature fluctuations etc. Plus, there were, of course, a few difficulties for my sensitive system (a house on stilts that shook so violently, I couldn’t sleep, overwhelming bleach smell in the bathroom, strongly chlorinated tap water, too many stairs), but it was definitely worth it.

Over four months ago, I wrote a Love letter to my sons as a preamble to the big post I intended to write about the coast trip and then, of course, never got around to writing it. I’m struggling at the moment (this post has taken me a week to put together), so I’m going to let the photos do the talking.

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Half the house packed in the car, ready to go.

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ROAD TRIP!

This was the first night we arrived. A beautiful crescent moon welcomed us to the coast.

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Some days were overcast…

… with dramatic evenings.

Some days were glorious…

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…with breathtaking sunsets (taken from the balcony).

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The beach is exhausting. 😀

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The couple next door got married on the dune in front of our house. I wound up talking to them the day we left because I wanted to send them the photos I took and, in a bizarre coincidence, it turned out the bride had been suffering with a similar illness as mine, had tried many of the same treatments, knew all the same doctors. We both got tears in our eyes. It was a surprisingly beautiful thing to talk to someone so freely *in person, not on the internet*, without having to explain anything.

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The flag on the left is where they were wed.

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We had no plans to go again this year, but our best friends wound up renting the house next door to the one we had in June, so, at the beginning of this month and at the very last minute, we decided to join them. I’ve gotten worse the past few months, so I knew I wouldn’t be able to participate as much as I would like to (the first night they all played cards and had drinks, while I was in the other house, resting. The second night they had a bonfire on the beach, while I was inside, resting), but there were wonderful moments of normalcy: Z. chatting with me over morning tea, without the time-pressure of a planned visit; my dogs’ excitement when they saw Aunt Z. and Uncle J. on the beach — missed members of our extended pack; watching their family fly kites on the beach; colouring with sweet Anna while she talked my ear off more than she ever has before; eating dinner at a table with a group of friends, with conversation, laughing and music playing in the background (<~ this most of all: just hanging out amid all the normal sounds, feeling part of a group); and the social time my husband got, just hanging with friends he hasn’t seen properly in years.

The only downside was my dogs are showing their age much more now than they were even four months earlier. I couldn’t use my scooter as much as last time because they simply didn’t have the stamina to walk distances and were both limping after our first short excursion. The last — and warmest — day, Bowie didn’t even get out of the car for more than a minute. He was pooped. And Riley just sat next to me like a sentry, wondering why I was lying on the sand. I fear it really might have been the last hurrah on the beach, which makes me even happier that I pushed myself to go and create new memories.

The boys were thrilled to be back!

Our best friends frolicking. 🙂

Bowie and sweet Anna flying a kite.

One day was dark and brooding and that night it stormed with 50 mph winds.

Another day was sunny and clear.

 

Small steps with payback… But new memories and happy dogs are everything.

Communication Breakdown

There was a point in my climb up the career ladder that I started talking about “the email problem.” At the time, most of my job was spent “in the field” — opening restaurants, traveling from store to store, hiring, training and meeting with employees. As my shifts were mostly on the floor, observing restaurant operations, the email problem grew and grew and I would spend all of my “downtime” trying to catch up. I never sat in front of a TV or ate a meal without my laptop, I stopped reading books. Eventually, I was in an office full-time and I still could not get on top of the computer work, even being at a desk all day. This was before I had a blog and blog comments to answer or Facebook messenger or WhatsApp. This was before I knew that Facebook groups existed, before I had cultivated friendships with 100% online communication. And this was before I got sick and wanted to ingest every bit of information that might help me. I have saved, bookmarked and sent hundreds of articles, educational videos and podcasts to myself, in different places, on different devices. I have 50K+ emails that I want to deal with, but I’ve compartmentalized them into some dark room in my mind so I can function. It’s now an “information problem” or a “communication problem.” It’s unmanageable. But I do it to myself.

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My personal gmail accoount.

I’ve always had a methodical way about how I tackle life. I like to do things in order, finish them and file them away. When I haven’t dealt with something, it becomes a small weight in my mind and, though I may look as if it’s not bothering me, it is. They are. They’re heavy. My husband is the complete opposite. He can’t understand why the ripening tomatillos and our over-burdened plum tree stress me out. He has no problem with piles of disorganised paperwork and chaotic junk drawers all over the house. If he doesn’t answer emails, it doesn’t weigh on him. Come to think of it, that’s another thing that drops little lead pellets in my brain: messages that I’ve sent that don’t get replies. They don’t weigh as much as emails I haven’t answered, but they still take up room at the back of my mind. I like discourse: unfinished conversations nag at me, even if those “conversations” are links I send my husband in a PM. A month later, I’ll say, “Did you see that video? You never mentioned it.” God, my skull is full of thousands of ball bearings. No wonder my neck always hurts.

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I often wonder how I would handle this illness if I were more like my husband. He is a content person. That sentence sums up our greatest difference. He is content with our home, with his routine, with his simple diet. He is content with his body, with his habits (good and bad), with his legacy, or lack thereof. The truth is, the only things my husband wants to change are things that I tell him need to be changed for my happiness.  I have never been content with anything, ever, never. My need to experience… it’s like a rabid, ravenous hunger. New places, new people, new information. It’s like a constant electric current that makes contentment the least accessible state of being imaginable. When I’m at home, I want to be on the road or on a plane. When I’m traveling, I long for my garden haven. I ruminate on the past and worry about the impact I will have made on the world when I’m gone. I’m critical of my body and chastise myself for my bad habits. I want to watch every movie and TV show, I worry about all of the wonderful music I am missing, I collect hundreds of books that I never read. I WANT ALL THE FOOD.

More and more, I realise that this fundamental trait is the reason I don’t sleep. Every night, I put it off to do/read/watch one more thing. Every morning, I can’t wait to get up and tackle things, even if that “tackling” is lying on my back in a dark room, looking at my phone. It doesn’t matter if I wake at 6am or 11am, as soon as I am conscious, my brain is like a bullet train. A bullet train that can repeatedly dichotomize and travel down dozens of branching tracks with the same enthusiasm… but they all fall off the a cliff after a very short journey. Because that’s the real problem. This year, my worst symptoms by far are from the shoulders up. There’s still a lot going on in my body as a whole, but the truly limiting factor is my brain. I don’t have enough hours of neurological clarity to manage 1/10th… no, 1/50th, maybe less… of what I want to and what I used to. That is now my true disability.

Recently, I’ve had a few people ask how I am because I haven’t written much lately. The short answer is I’m okay. There’s so much I want to write about, I simply stopped writing. Mostly because I know if I hit that cognitive wall while writing, I won’t be able to manage anything else, like preparing food. Also, when I gained some ground, it quickly got filled with doing more chores for myself to alleviate my husband and tackling my to-do list. I read all messages and emails (for the most part), even if I am remiss in replying. I promise you, all contact touches me deeply and adds fuel to my tank. It is never not appreciated on a very conscious level. So, bear with me and, if you can tune into your psychic abilities, you’ll hear me sending my love to each of you and we’ll never feel out of touch.

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