Addendum to My Update

My friend Karen commented on my last post that I was having a rough go of it and it got me thinking that I might be doing better than I expressed. I probably downplay the improvements partly out of superstition, but also because the hourly changes in this disease make any quantification of trends virtually impossible. And, even more than that, it’s the Can I Get A Witness? thing — that obsessive need I have to not sugar-coat… to make sure reality is patently clear… to lay bare the horrors and try to put them in perspective, held in relief against what life used to be like and, also, how much worse it could be. People are so excited to see progress that I get lovely messages saying, “Glad to see you’re feeling better!” When you’re sick like I am, there’s this knee-jerk reaction to follow up any proclamation of “I’m doing well” with but I still have X, Y and Z going on. Or “I went to the dog park” with but that was one hour out of a week that I spent mostly in bed. God forbid anyone gets the impression that I’m not still very ill.

Believe it or not, this is progress for me. I spent so long living like a clenched fist, ashamed of what had happened to me. My sense of self was so tethered to being vibrant, independent and energetic, that the thought of being seen as sickly paralysed me with loathing. Not only did I, myself, squeeze closed in defiance against my illness, but I brought others into the ruse by vowing them to secrecy and deflecting any concern. I remember, six months after I got sick, telling our administrative assistant that I was leaving my job. “I’m sure you’ve noticed how sick I’ve been…” “No, you are?” she said and I was stunned into silence. How could she not have seen my white-knuckling it through the days? “Well, I’m leaving, but it’s only temporary, I’ll be back. If anyone asks, I’m taking a sabbatical as a bonus for all the years I’ve been here. Don’t mention illness to anyone.” It is only recently that I’ve started to relax my hold. I told an ex-boyfriend what was going on and was met with such empathy and kindness that he might as well have physically unfurled my clenched grip. He didn’t seem to be thinking, Phew, dodged a bullet there like I assumed he would. So, I started talking about it a bit more, without that roiling, acrid squirm in my belly. I mentioned it on my facebook page, and have slowly — very, very slowly — started to be ok with sick being part of my… brand (for want of a better word). So, I try to embrace my unsolicited and redundant descriptions of life as healthy steps towards self-integration.

But things are better and I’m probably handling this life better, too. I looked in the mirror the night before last and I was smiling while washing my face. I looked normal, I felt almost normal. I remembered how there was a time that my husband was washing my hair and making my meals. There were months when I lay in my room, hour after hour, bouncing between panting, wild-eyed terror and feeling like a slab of immobile meat, with barely a breath or pulse. You can have a husband downstairs or a friend a phone call away and still be totally alone, planning your permanent solution because it doesn’t matter if the problem is temporary, you can’t last one more minute. There’s only so many times you can tell someone how awful you feel. My few confidantes took on the burden of that while I folded into myself, away from friends and family.

How are you? I miss you!
I’m half dead, scared and lonely. Miss you, too.

There’s only so many times anyone can deal with that, even your closest allies. So, after a while, you stop talking about it. You decide that you better start grinning and bearing it for everyone’s sakes, including your own. But the need to express the loss never goes away — at least not yet — which, I suppose, is why I continue with this blog.

So, without the negative couching, I will say, I feel better than I did a year and a half ago. Many chronic symptoms are more sporadic and I feel hardier, able to push myself without fear. Key to all of this is human contact. I’ve let down my rigid protection and connected with some people online who don’t judge or blanch in the face of the truth, who can listen, laugh and call me out on my shit. This has truly been hard for me, but I’ve been disarmed by their candor and charmed by their openness and that has allowed me to trust. I still tread lightly and share carefully, maybe not believing I won’t have to suddenly curl quickly into a protective ball like a rolly polly, but I feel a quiet evolution inside and that has made me less bitter more optimistic happier less bitchy more at peace.

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.

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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.

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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.

This Year: Life, the Universe and Everything.

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Even though I’ve been wiped out for this entire week afterwards, my birthday outing was worth it. The day before, I had found a third-hand mobility scooter (at a third of the price) on Craigslist. I have been looking for one that could handle rough dog park terrain (big wheels, decent suspension, strong motor), but could still be dismantled and put in a car (ie: not the fun Harley-esque one I had my eye on, similar to my friend Jak’s). My husband drove two hours round trip to buy it and I was able to take it to my favourite off-leash dog park: 40 acres of trails, fields and river access.

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The weather was sublime. Actually, that was the only blip in our day: as soon as I arrived, I had to park in the shade, strip off two layers of shirts and have my husband reach up my yoga pants to peel off my compression stockings. Plus, I was drinking hot chicken soup. I was kicking myself for not bringing sunscreen. But, after that, all was well, if a little harsh and bumpy on my bones. This 4-day payback headache I have is probably from jostling my spine on the gravel and mulch (and I won’t mention the horrible nausea that hit me at 10pm and the relentless barrage of nightmares that followed that night because this is meant to be a happy post).

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Big smiles. :)

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I couldn’t get a photo, but there were huge blue herons flying into the nests and babies up in the trees.

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My boys playing with a new friend.

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That evening, my sister and her boyfriend came over and she suggested getting take away food from a nearby restaurant, which I hadn’t even considered. So, we ate dinner at the table (as opposed to my usual on the couch with my feet up, reclined) and I had a delicious beef tenderloin and coconut rice. They accidentally put some Gorgonzola on my steak and, oops, I forgot to scrape it off. That was a celebratory taste explosion that I haven’t encountered in 2.5 years.

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“The hills are alive….” Pretend I’m spinning…

Then, to top everything off, two days later, I got a visit from my dear friend, Z. She came bearing flowers and a bag of gifts for me to open and, the best part, her little girl, whom I consider a niece. Baby A chatted away, which is all new! The last time I saw her she hadn’t quite found her words around me. What a treat.

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42, the answer to the Ultimate Question of Life, the Universe and Everything.
It’s going to be a good year. I have faith.

Kinda.

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Birthday (or) Bust

My first plan for my birthday tomorrow was to make a return trip to the coast so I could see my dogs run on the beach. I’m acutely aware of time passing. Facebook showed me a photo of my Bowie that I’d posted this day last year and he has hardly any grey. Today, he is a grizzled old man.

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My boys don’t have a lot of years left and I missed three of their most active years while I was busy trying not to die, so, if I could get them out of the house to the coast a few weekends a year, that’d be my dreams come true. Or, at least, one of my dreams. The really low-shooting one. I also dream of being able to have an extended conversation, but that’s getting pretty ambitious.

I’ve been watching the weather on the coast constantly, knowing there’d be no point in making the trip just to get rained on and succumb to the bone chills to which I’m so susceptible. As soon as the 10-day forecast was available, I knew it probably wasn’t going to happen. That was the first birthday plan to be doused.

But I had a plan B: I thought perhaps we could go out to eat for the first time in years. I’ve reintroduced many foods (most nuts and seeds, milk, corn, oats, nightshades) and I’d had a stretch of days where I didn’t need to go to bed in the afternoon, so I thought maybe I could risk going out to a restaurant, indulge in someone else cooking for me… you know, an early-bird dinner on a Monday, so the place is quiet — somewhere close, that uses fresh, local ingredients…. I haven’t worn a stitch of makeup in almost three years and, about a month ago, thinking of my birthday, I ordered a “sampler” of makeup online: a cheap case with a shallow circle of powder, eye shadow, blush. I thought maybe I could put on a birthday face, put some colour in my cheeks, make myself feel normal, maybe even attractive. I even rescheduled my haircut to be before my birthday. Dinner, dolled up and a do. This was a big deal.

Then, plan C: I decided maybe I could have a few of my old work friends over on the Sunday for an hour or two. Surely I could manage a very low-key visit Sunday afternoon and a very low-key dinner Monday evening… after all, I go to multiple doctor appointments every week. Plus, my birthday is falling during the follicular phase of my cycle, which is, historically, my least reactive time. I invited my work friends over for today and made a dinner reservation for 4 people for tomorrow, hoping our best friends, Z and J, could join us… But, it seems the very thought of an occasion is enough to kick off a roller coaster of symptoms. 

My throat spot started to itch when it hadn’t bothered me in months. Headaches returned when I went weeks without one. My sleep got worse and heart palpitations were constant. Then, while I was sitting in therapy, my tongue started to swell. I bit into a Benadryl in between bitching about my doctors and my isolation. That kicked off this last week of trouble. I had no appetite, my body felt swollen and inflamed. My neck was stiff and I was chilled to the bone every day. Things calmed down a bit just in time for my second round of bowel tests a few days ago, but that appointment stirred up gut problems that stopped me from sleeping again and the roller coaster started another run around the track. 

I gave in and cancelled the dinner reservation a few days ago during the second tongue swelling episode. If all my normal home-cooked food has become suspect, how can I heedlessly stuff my face with Carnaroli Risotto or Mini Duck Burgers? Plan B was scratched. I warned my friends that Sunday might not happen, gave them daily updates. I said, I still have faith that we’re on, but… we might not be on. I scrambled for backup plans D and E.

I decided, at the very least, I’d like to go to my favourite dog park, which I haven’t visited since becoming housebound. It’s huge, with fields, paths, bridges and a river and there are always tons of dogs. I would need a mobility scooter, but it might be worth the money to rent one. It’s meant to be sunny and warm and I immediately get tears in my eyes thinking about how happy my dogs would be to go there. When I really think about joy — freedom, nature, happy pups — this is what I want to do for my birthday. My sister and her boyfriend offered to come over on my birthday, too, so at least something would feel special if I were too sick to move off the couch. 

Yesterday afternoon, I finally gave in and called my friends off, so they weren’t being strung along and could make plans for their Sunday. There goes plan C. But, ever the optimist, I told my sister that maybe, if I felt good today, I would get ballsy and jump on a late brunch or early dinner at an actual restaurant, actually dressed (plans F and G?). I slept a long time last night and awoke hopeful, but my body wasn’t cooperating and, at 2pm, I let her know brunch wouldn’t be happening. At 5pm, I texted her from bed and told her dinner wouldn’t be happening.

Tonight, I’m not doing well. I’m flushed and have cold sweats, my entire body feels swollen. Tomorrow, I won’t be putting on any makeup or eating any fancy food, I won’t be chatting with old friends or smelling the ocean air. But, I’m going to try my hardest to sleep peacefully and spend an hour outdoors, in the sun with my family and then watch some telly with my sis in the evening. Out of my 7 ideas, I have faith 1 or 2 will make it a special day and, if for some reason those plans are scratched, too, I’ll still be celebrating that Whoohoo, I made it to 42!

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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:

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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:

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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.

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With my friend, Z., and my Kawasaki.