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My onset of ME

Discussion in 'Lifestyle Management' started by EMilo, Nov 2, 2014.

  1. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    Halloween is the 3-year anniversary of the night ME started for me. I wrote this blog post and thought I'd share (don't know if this is the best part of the forum). Thank you all for helping, advising and supporting me over the last 3 years. You have been invaluable and I'm deeply grateful for this community.

    Día de los Muertos

    [​IMG]

    I can’t remember what was on tv. I was listening casually while I sat, writing Christmas cards on the other side of the room. I had five half-boxes left over from the years before and I was determined to have all of them written on time because I’m notoriously late with cards. I decided to start writing them on Halloween night because I could see our gate from the dining table and, when the kids arrived, I could dash outside with the bowl of chocolates before my dogs heard anything and went into cacophonous protection mode. I was hunched over, scribbling and, when I straightened, I felt this ripple go through my body. I’ll never forget that feeling. Like a ghost had walked through me. Like unearthly cold hands had reached inside my body and stroked downwards, from head to toes. A momentary shudder through my brain and nervous system that I never imagined would settle into each muscle and fiber, growing, mutating, eroding. I think of it now and wonder what was happening on a cellular level while I was nonchalantly scribbling notes.

    I said, “Oh, I’ve been at this too long” and went to the armchair, curled up fetal, and fell asleep. An hour later, I awoke and knew something wasn’t right. Although it hadn’t really started yet, it felt more serious than a cold or flu. I felt unstable on a systemic level and thought it might turn into one of my syncopal episodes where I would collapse, pale and clammy, with a barely detectable blood pressure and pulse. I said to my husband, “You have to come to bed now. Something might happen and I won’t be able to make it down the stairs to get you.” Those were the days when we used to share a room. Before my illness became my bedfellow.

    I spent the next four hours colder than I’ve ever been in my life. I was fully dressed, in bed with a hot water bottle, teeth chattering, shaking so violently, little moans were squeezed from my chest. I vividly remember the eternity it took me to move my hand out from under the duvet in an effort to cover one freezing ear. I thought if my hand left the relative warmth of the blankets, it might freeze solid and shatter into pieces. Oh shit, shit, shit. I’m sick. This is a doozy. I couldn’t ever remember having something like this, but it reminded me of my husband’s horrid battle with chicken pox. He was the sickest person I’d ever seen.

    I drifted into sleep, curled in a tiny ball against the headboard, holding my knees, and, when I woke up, I was drenched. I had never experienced even slight night sweats and I couldn’t believe my body contained so much fluid. It was as if someone had poured a bucket of water on me. I could slap my stomach and make little splashes of sweat. And I was so relieved. I had assumed I would battle this virus for days, but the fever had broken after only a few hours and it would be a quick recovery. How could I imagine that I would continue to experience this almost every night for the next two years, losing lifeforce into my bed sheets, becoming weaker and weaker?

    I spent the last of the night drifting in and out of fever dreams, waking up intermittently, sweaty and shaky. My husband snoozed peacefully beside me. At one point, my bowels cramped up and I wondered if it was just some atypical food poisoning event. In the morning, I decided I was on the mend, showered, got dressed and went to work. Because that’s what you do… So, that’s what I did. You’d have to be on your death bed to call in sick and, besides, I wanted to save my days off for Christmas.

    *****
    [​IMG]

    I’ve thought about that night a lot over the last three years. The moment my immune system shifted permanently. My utter naïveté about what could happen to a body. Although I’d taken many premed classes and had quite a few health problems in my life, it really never occurred to me that I wasn’t unbreakable. Or, at least, if I broke, I assumed I’d be able to be fixed if I put in the work. I had been diagnosed with Graves Disease a few years earlier, told it would kill me without treatment, had radioiodine ablation on my thyroid and had to avoid people for two weeks. And, during all of this, I never took a day off of work. It also never crossed my mind to get a second opinion, talk to others with the same condition or change my eating and sleeping habits. I just popped the radioactive pill and got back to work. The same month, I was told I had reactivated EBV by a naturopath and was advised to cut back my work schedule from 55 hours a week to 20… Ha! I’m sure you can guess how that went. I never saw that doctor again. I was too busy.

    I had never been intimately exposed to chronic illness, so I was completely ignorant to the toll it could take on a family. I imagined it would be hard, of course, but you can never understand without experiencing it. Everyone in my family is healthy, even my extended family. We have our demons, but they’re addictions, mental health problems, typical old age conditions. I had my first major bout of angeoedema when I was 23 and went into anaphylaxis for the first time when I was 28. My siblings are all in their 30s and 40s and haven’t had more than the occasional cold. My parents are in their 70s and both still work and are active and social.

    I was a sick baby. People would famously stare at the itty bitty girl with the old man’s cough. If I’d understood what could happen to a body, if I’d been less in denial, if I’d been less concerned about proving my bullet-proof toughness, I might have looked back on my childhood and my chest infections, thyroid disease, vasovagal syncope and all the symptoms that turned out to be mast cell activation disorder and tried to make changes to protect myself. If I’d understood what can happen to a body, I might have tried to nurture what was obviously a sensitive system, armour myself against external assaults and preserve what was still working. I could have eaten food that didn’t come from a restaurant kitchen. I could have taken a vitamin once in a while and stopped drinking all of my water out of cheap plastic bottles. I could have made sleep a priority, quit smoking and drinking sooner and not married a job that turned a run-of-the-mill control freak into a spread-too-thin obsessive perfectionist, trying to do all things, everywhere, first and best.

    It’s been exactly three years since M.E. shuddered through my body and I wonder if I’ll ever stop thinking about the life that I lost that day. I would take all of my previous health conditions over this one. It was like a death: of my career, of my strong body, of ignorant bliss, and of our future dreams. I think about the months leading up to it — the blatant warnings of a body in crisis that I chose to ignore. There was a nagging voice in my head that pushed me to make a will, living will and power of attorney the year prior, at the age of 36. That same voice made me insist on a quickie marriage in the back garden after my husband and I had been together 13 years. I wanted him to be able to speak for me if I happened to be incapacitated and have legal recourse and rights if I died. I did everything I needed to do for luck: old, new, borrowed, blue, coin in my shoe… We signed the papers on the patio table and, half way back to the kitchen to grab our lunch, I remembered the last thing needed to insure we didn’t jinx our new life: he carried me over our backdoor threshold. We didn’t tell anyone because we thought we’d have a proper ceremony with friends and family in the next year or two — maybe in Ireland or somewhere exotic on a beach. It was exciting to dream up plans for a wedding after so many years together. That was 44 days before my Halloween sickness.

    My life feels like one of those Choose Your Own Adventure books that I adored as a kid.

    Move back to Ireland after college, turn to page 63 or drive across America to Seattle, turn to page 82.

    Work your way up the restaurant corporate ladder, turn to page 103 or go to grad school for nutrition and dietetics, turn to page 123.

    Jump in the lake in Virginia, just once, for only a few minutes, turn to page 146 or stay dry and don’t catch whatever is going to land you in the ER, wipe out your gut flora and set your immune system up for failure, turn to page 160.

    Run into Walgreens on the way home from work and get a flu shot, turn to page 184 or keep on driving and live the rest of your life never having heard of myalgic encephalomyelitis, turn to page Happily Ever After.


    I know, I know. You want to say it might have happened anyway. But it wouldn’t have. And you want to say I’ve got to stop ruminating over the what ifs and focus on the present. But it’s the Day of the Dead, a time to remember the dear departed. So, today, three years after the specter came to stay, I will think about the woman I lost that hallowed eve.

    [​IMG]

    I’ll leave you on a happy note. November 1st is not only the anniversary of the first day of my new life with chronic illness, it is also the anniversary of my first born son, Bowie, arriving in our lives. ^^

    ElizabethMilo.com
     
    Last edited: Nov 6, 2014
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  2. maryb

    maryb iherb code TAK122

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    Oh Elizabeth what a heartbreaking story, just so glad to hear of Bowie. I guess if he's your first born you have others. All a precious gift.

    Nearly every word struck a chord with me, that's exactly how my ME started, a whole body 'something' how could you describe that to the doctor in A &E where I went 7 hrs later as I just knew something was terribly wrong, and even down to the 'bowel' same here, oh maybe a touch of food poisoning, if only. I've been sick for 9yrs now.

    I did go into remission for a few months after 12months of being sick, I immediately reverted to my busy busy lifestyle, I didn't learn my lesson so when I get better again, I have I have. So should you.

    oh and Halloween is my birthday, I haven't enjoyed one birthday in all that time, this last one was one of the worse. So not good memories for me either.
     
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  3. PDXhausted

    PDXhausted Senior Member

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    NW US
    Thank you for sharing this! I often think of my "day" and the signs leading up to it... As awful as it is, there is something so soothing and comforting about hearing someone else share theirs. It makes me feel so much less alone. Like I didn't just imagine that day, but we all have it and can validate it together. Wishing you the best on your journey.
     
    Last edited: Nov 2, 2014
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  4. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    I was at school when mine started, it was the middle of the morning, I was chewing gum... just 13 years all. Nature has no mercy
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @EMilo I am still following your blog but am glad that you also posted this here on PR. You are a great writer and person and I enjoy reading everything that you write. Thank you for being so open in sharing it all with us.

    ETA I know the exact day and moment that I got mono in 2012 (following a minor surgery) and then 10 months later, the exact day that it re-activated and I got severe unexplained tachycardia and autonomic problems.
     
    Last edited: Nov 2, 2014
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