Blogepilogue

So I never came back as I promised to, did I? Until now.

Where
have I been? At the end of 2007, right after Christmas, I very suddenly
became bedridden. It happened almost literally overnight. And I thought I
would bounce back some, as I always had up to that point, but I
didn't. So two weeks into 2008, I resigned from my job, which I had been
doing from home since mid-2006.

What caused it? I stopped being
able to sleep in October 2007. One night I went to bed and I just
couldn’t fall asleep. Same thing the next night, and then the third
night I slept for two hours. Then two days without sleep and then
another two hours. We started trying over the counter stuff, which
didn’t work, and then prescription stuff. After a few months of almost
no sleep, I couldn’t walk, couldn’t stand, couldn’t sit up. Bedridden.

In
the process of trying to find something to get me to sleep, a doctor
who failed to warn me what I was getting into had me on 2 mg of
Klonopin, which quickly turned on me. I started a six-month hell of
withdrawal in March of 2008. In May, we moved me from California to my
mom's house in Indiana, via air ambulance. And I went downhill all the
way through 2008. In the fall of that year my sleep drugs failed and I
again went months without sleeping. Already totally bedridden, I believe
I came pretty close to dying. I couldn’t lift a glass, couldn’t move my
legs, my heart was going crazy, and the lack of sleep and another poorly-tolerated drug threw me
into a sheer hell of paranoia and delusion.
 
At the beginning of
2009, because of a fortunate leftover forgotten prescription for a
soporific muscle relaxant from that same stupid doctor who’d prescribed
the Klonopin back in California, I survived a couple months by finally
getting a little sleep. Then in spring of 2009, with the combination of
an off-label prescription for an anti-psychotic and a new beta blocker
(both of which I'm still on), I started to get some full nights of sleep
for the first time in a year and a half.

Soon after that, we heard from Dr. Cheney,
a prominent ME/CFS doctor whose waiting list I'd been on for a year and
a half. He could see me in June. So in June 2009, we took me – lying
down in the back of my mom's SUV – from Indiana to his clinic in
Asheville, North Carolina. I spent two full days with him. He told me
that of all the patients he’d seen in his twenty-five years of treating
ME/CFS, I was among the half-dozen most severely affected. 

When
we left North Carolina, we took me to Pennsylvania, where Chimp had
bought us our first house, near the college at which he’s now teaching.
Once we got there, it took me a couple months to recover from the trip.
While that was going on, it took about 90 days to add each medicine and
supplement Dr. Cheney had prescribed, carefully, one by one, to avoid
confounding any negative reactions.

Slowly, after about another
three months, I started noticing tiny, tiny improvements. After six
months, a little bit more. I could pet a cat a little. I could type a
sentence or two. I could participate in a conversation for a few
minutes. By Christmas Day 2009, I was able to walk the twenty feet from
my dayroom to lie down in the living room to visit with my in-laws,
who’d come up from Maryland. By March of 2010, I was able to walk to the
bathroom again – something I hadn't been able to do since 2007.

At
this point – a bit more than halfway through 2010 – I’m still
technically bedridden. But there are gradations of bedriddenness,
believe me. In 2008, I literally could not get out of bed and walk
across the room. Right now, I wake up in the morning in my bed, walk the
20 feet to the couch in my dayroom, and lie back down there, where I
spend my days. Most days, if I want to, I’m able to get a snack out of
the pantry five feet away. I can walk to the bathroom a couple times a
day. If I’m having a particularly good day, I’m able to get up and walk
10 feet or so to the kitchen table and sit there for a few minutes,
talking with Chimp. I’d say I’m about 98% bedridden.

So all of
that’s why I’ve never been back. And because I remain bedridden, I don’t
have any plans to start blogging again. I miss the food business. I
miss cooking even more. I miss the grocery store and my friends at the
farmer’s market. I miss blogging somewhat less than all of those things,
I’ll admit, but I did enjoy it.

The other thing that’s happened since I disappeared is the paper in the journal Science about the retrovirus XMRV.
That’s what Dr. Cheney thinks my illness will eventually proved to be
caused by. (I’ll be tested sometime this year, when the “green
fluorescent protein” assay is introduced.) The XMRV discovery is huge,
and it’s done so much for my sense of hopefulness – even though it
possibly means I have an incurable retrovirus! Someday – hopefully soon –
there’ll at least be some treatment for my illness, and those of us who
are suffering will be believed – and vindicated.

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6 Responses to Blogepilogue

  1. Emily says:

    I appreciate the time and effort it must have taken to write this, J. I still keep your blog in my feed reader because I trust some day, you’ll be spilling the beans again. 🙂

  2. You are amazing that you can still write after suffering such severe ME/CFS. Are you still a vegetarian? I was a vegetarian when I got sudden onset ME/CFS in 1986, and I also saw Dr. Cheney. He found that I was very low in Vitamin B-12, and he suggested that I would get well faster if I started eating meat. I did. Although I have not recovered, I had a wonderful year of about 80 percent remission while I was being treated, and I am grateful to him. I still think he is absolutely brilliant. In January 2010, I received my results from VIP Dx and found that I am culture positive for XMRV.
    I am still struggling, but I am so happy to hear that you are doing so well. It gives me hope.
    Patricia Carter
    http://www.mecfsforums.com

  3. Jen says:

    You don’t know me–I am just an online fan of your great blog. But I just wanted to post and offer sympathy for what you’ve been through and support for what you will do in the future. I can’t imagine how difficult it must be to keep the faith in the face of this awful experience. I just want to wish you the best of luck and let you know you have supporters out there on the internet, even if you’ve never met them. 🙂

  4. Janet says:

    Oh what a lovely day, dear wonderful niece, to see an entry on your blog again! Love to the moon and back, Janet

  5. Ruth Ratzlaff says:

    Jocelyn: I’m one of your fans from back in Fresno, and am thrilled to find out your condition is improving and you’re closer to identifying what’s happening to you. Your spirit sounds good.

  6. maryosha@gmail.com says:

    Your recipe for roasted Yukon gold potatoes with zucchini and poblano peppers is a huge family favorite, one I serve to guests with raves several times a year. So sorry to hear about your health problems. I came to serious cooking after the three kids left home, and it’s a wonderful, healing thing for me. Hope you stage a comeback soon.

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