June Update

It’s been a while since I’ve had the energy to write an update. As usual, I have a lot to document in terms of doctors and tests, but, overall, not much to report on my life and illness. My mother was here from Ireland this past week and that was, by far, the highlight of the last 4 months. 6 days seemed like 6 hours, though, and I’m left feeling a bit barren after her departure, like there are tumbleweeds blowing around inside my chest and hollow silence echoing against the inside of my skull.

I’m still housebound besides healthcare appointments and the odd dog walk on the scooter. I do think I’m marginally better than this time last year, though, which is heartening considering the horrendous ordeal of last autumn. Mostly, I think this because I’m walking more steps than I have since 2012. I regularly hit 2,000 on my pedometer, which does wonders for my mental well-being to think there is forward momentum. However, the flip-side is I have had more severe muscle pain and out-of-character joint aches. I am stiff in the morning and try to make myself put on compression stockings and a back brace if I’m going to stand in the kitchen for any length of time. I know I should scale back movement because, when I do, the muscle pain is better, but I’m really grasping onto that measurable progress for dear life.

There are other slight improvements. My sleep is still better than it was the first 3 years I was sick (although, I still don’t get much and it is plagued with fitfulness, nightmares and pain). My headaches, although they have resurfaced somewhat in the last month, were gone for a few months earlier this year, which is utterly life-changing. My resting face goes from this :twisted: to this :? .

There are still, always, a lot of daily debilitating symptoms. For 3 full weeks after my birthday outing, I was not doing well. My flu symptoms came back and that always alarms me — chills, sore throat, extremely heavy muscles, pain. I also had a few bouts of the worst vertigo I’ve experienced since my tilt table test payback. One night it came on so quickly and viciously, I fell over and hit the floor on my way to the loo from bed. I was moaning out loud from the queasy out-of-bodiness, which is unlike me, and I was reminded again of Laura Hillenbrand and how unrelenting vertigo could possibly be the worst imaginable symptom.

Hair loss hasn’t stopped, but is better than last year. Or the short, choppy cut disguises it more. My eyes are their usual nightmare of blurriness and sore extraocular muscles, even though I am regimented about (gently) scrubbing the lashes and using preservative-free tears throughout the day. Tinnitus and skin are still bad, my neck is still banjaxed. I am still spending about 14-17 hours in bed each day. I guess that’s a bit better than last year.

Finally, there is no real change in my worst symptom: Brain Drain. Which doesn’t describe it. I’ve been trying to articulate this symptom for years — to doctors, to my husband, my mother. It’s not brain fog. What I call brain fog feels tired and cloudy, causes effort to recall and calculate things. My Buzzy Brain is like Stephen King’s The Long Walk: if you can imagine being made to walk until you physically drop, but then transfer that body feeling to the brain. The same way muscle exhaustion is physical, my brain exhaustion feels physical. My brain can’t take one more step to do anything. Can’t read, write, speak, hear. It comes on gradually, so I usually find myself wading through the quicksand of a conversation or article, slurring or rereading the same thing over and over. I get testy, dizzy, weighted down by head pain and then realise, Oh, duh, time to go to bed and stop everything. Not being able to push through the brain problems (just finish this sentence, this tv show, this meal) is much more depressing than not being able to push through the physical limitations. Take my body, just, please, leave my mind.

The outcome of this is nothing ever gets done. I never finish tasks and months slip by. I also never seem to get going on any plan of attack to conquer the myriad of abnormal test findings: candida, low immunoglobulins, high cholesterol, reactivations of viruses, methylation problems, high mycotoxins. There’s always a bigger fire to put out — the poisoned nocturnal reactions, the crashing blood pressure, the death of my bowel — before I can carefully address less acute problems, while tip-toeing through the minefield of menstruation mast cell instability. Although, given my track record, maybe the best treatment for my body is no invasive treatment at all, just lots of pacing, meditation, good food and the pursuit of laughter.

The few things on which I am actively working are my hormone deficiencies and my tanked thyroid (as per usual). Since last September, I have now quintupled my levothyroxine (T4) and tripled my liothyronine (T3) and nothing has changed. I’m spending an absolute fortune on compounded meds, hoping my body will absorb them better than the generic, affordable ones, but, so far, no dice. I will update soon about my new, wonderful endocrinologist and her thoughts (as well as my other doctor visits).

So, almost 3 years and 8 months sick and that’s where I’m at. If I could find relief from the social isolation and financial instability, there could be some sort of life here.

IMG_20150619_160124
But, as it stands, I take my joy from the incredibly beautiful spring we’ve had here in Seattle and every opportunity to lie outside in the garden oasis my husband has created and see my dogs run in the park.

IMG_20150617_113943

IMG_20150607_184415-1-1

IMG_20150531_181428

Throwback for ME Awareness

To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.

Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.

Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.

It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.

Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.

Driver License Dilemmas

I had to renew my driver license for the first time since being sick and, thankfully, I could do it online. However, when this question came up, I stared at it for a long time:

IMG_20150425_131718-1

I wanted to select yes. I’ve always been an organ donor. I imagined they’d harvest everything in my body and many people’s lives would be enhanced or extended. But, with this illness, I can’t risk it. I won’t give blood and I won’t donate my organs and it kind of breaks my heart. I wouldn’t be able to donate a broken heart, anyway.

But, let it be known, that I want my body donated for ME/CFS research. I’m not sure how to make that happen, but, if anyone knows, please give me details. Worst case, I suppose I can donate for medical research like my mother has organised with University College Dublin.

After the organ donor question, I got this. This one I stared at for a very long time:

IMG_20150425_132104-1

Riding a motorbike was my dream. When I was a teenager, I got a second- or third-hand 50 cc moped which gave me incredible freedom and convenience. The Dublin bus system was unpredictable and I would crank that hair dryer engine all the way up on the dual carriageway to get to classes or get around after the buses stopped running (see previous post about being a nightowl).

During the very first conversation I ever had with my husband, he asked me, “If you could do anything right now, what would you do?” I had been telling him that I’d planned to move back to Dublin that summer, but, because of an upsetting situation, I didn’t know if I could. When he asked me that question, I answered, “Ride a motorbike across the country.” Unbeknownst to me, he was passionate about motorcycles. He hadn’t owned one in a while, but had recently been researching his next bike. I think maybe it was right then that he took a shine to me.

A few years later, I was tipped a brand new motorbike by a regular customer at the restaurant in which I served tables. He had been coming in for months, maybe years and, one day, he and his brothers pulled up on Harley-Davidsons. I got excited and whipped out the postcard of a Low Rider that I’d carried around for years: my goal, but I’d never actually sat on a Harley. Over the subsequent months, he tried to convince me to let him buy me a bike. I told him he was crazy. He told me he was a Microsoft millionaire (I’d never known that) and his wealth came to him like “stepping in shit.” He said it was luck and he had bought four or five motorcycles for his brothers and he wanted to know that he could altruistically buy one for someone who wasn’t a family member. I still told him he was crazy. He said he wanted to do it and I could sell it the next day and he wouldn’t care at all. He sat with my husband for hours and convinced him that he had no ulterior motives. One day he invited me to the Harley dealer and I thought it’d be fun, so I went and discovered I could reach the ground on a Sportster. He asked me what colour I liked and I said, “Black, definitely. Black and chrome is sexy. And a matte black helmet.” But, it was an off-hand question and an off-hand answer. I was just fantasizing. I had no idea what he was going to do that day; I think I couldn’t let myself accept it. While I was browsing, he was signing the papers. I tried to get into the office to stop him, but his brother stood in my way, grabbed my shoulders and said, “You gotta let him do this.” The next thing I knew I owned a brand new 883 Sportster, a helmet, custom-tailored leathers and a year of insurance. I used to stroke that bike, like it was a pet panther.

When I took the motorcycle safety course (which every driver on the road should take, it is so eye-opening), I dropped the bike twice, which should be an instant fail. They passed me, though, because the Honda Nighthawks they used were too tall for my wee legs and I had a perfect test besides keeling over at the stop signs.

I was never comfortable on a motorbike the way my husband was. He would leave for weeks at a time on long-distance trips, driving I-don’t-want-to-know how fast on country switchbacks. I would ride to and from work. Although I drove like a Pole Position speed-demon in a car, I was a granny on my bike. But, oh, I loved that feeling of freedom. One of my favourite memories of my life was driving across the Cascade mountains during the summer. Having taken off my jacket, which is such a no-no, I was just in a tank top and that rush of hot air, the empty road, the mountain scenery and the fear-adrenalin from not having my protective skin… it was like I’d sprouted wings.

But how can I justify $25 to keep the motorcycle endorsement on my driver license? The truth is, even with significant recovery, I will undoubtedly never want to tax my body and brain the way motorcycles do. My muscles were always tense, my hands lost all their blood supply from the vibrations, my brain was never not on high-alert, watching every car in every direction, scanning constantly for hazards in the road, animals, idiot drivers. It was stressful riding in the rain or driving over oil puddles or over grated bridges. I’ve never had an accident in a car, but I have on my bike, injuring my knee in the process. So, of course I will never ride again. It’d be like running up stairs instead of taking the escalator… and M.E. patients, even if they can stand up and walk, take the escalator.

So, I stared at the screen for a long time and, in the end, I kept the endorsement. If for no other reason than to have a beacon of hope for the future.

IMG_20150427_134758

With my friend, Z., and my Kawasaki.

 

The Gods Are Smirking

The chronic illness gods did not take kindly to my advertising their kindness and flaunting my good sleep luck.

After writing my last post, I had two tossy-turny not-restful nights that left me depleted and suffering brain drag.

THEN, the next night, my husband closed my blinds and curtains, but failed to notice that one window was wide open, so I was woken by planes, trains and automobiles at daylight. Plus, wind punching the closed blind in and out set up a sort of strobe light effect in my room.

THEN, the very next day, my husband untaped one of my curtains (they’re taped to the wall to block out every sliver of light) in order to fix something, but forgot to tape it back up, so I was woken at daybreak again by the bright line of sunlight on the wall.

IMG_20150419_200506

THEN, we had some glorious weather and I sat for hours in the sun for the first time in 7 months and the burn on my back made sleep very difficult for two nights in a row. Every time I rolled onto my back or the blanket slid along my skin, I woke up.

THEN my painful spasming bowels and extreme swollen distension from constipation gave me no rest for two nights. Like sleeping with concrete pumped into your gut.

AND it all culminated in a terrible 7-hour drenching-sweats-and-night-terrors sickness last night. I woke up over and over soaked from my forehead to my toes and finally, at 7am, I woke myself sobbing. I’d just held my dying dog in my arms while I begged someone to help. He had two bloody stumps for front legs and half his face was gone and nobody in the crowded room was helping (people’s lack of competence figures prominently in my nightmares. I think my loss of independence has shaken me to the core). My entire system felt as if I had just gone through that. I heard myself wailing before I was even conscious of where I was and I had called my dogs into my bed before I was fully awake, holding them, crying.

Such is this dis-ease.

I stayed in bed until 5pm, feeling wasted and shaky, and only dragged myself up so my husband could wash my bed clothes. I really hoped the poisoned nights were behind me (it’s been 3 months since the last one) and I have a different theory every time. This time I think it must be my body detoxing whatever my bowels can’t. I have that new sleep drug, Belsomra, but I really don’t want to mess with drugs when things have been going so well. So, fingers crossed the gods are a bit thick and this post makes them think, “Oh, you’re going to speak of your bad nights? We’ll put an end to that!”

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.