I have a new blog! Join me as I tell the entire internet about my life with severe ME/CFS at No Poster Girl.
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.
I’m trying to recover from another crash. I’ll be back when I can.
Some nights my body is so weary I almost forget about my love of food and wish there was a microwave dinner I could heat up. Then I remember that it’s not a microwave dinner I want at all, just the ease of it. I love my box of vegetables and my piles of produce from the farmers’ market, but they are undoubtedly more work.
There was food in the fridge that Chimp had made, so without the energy to cook I ate pasta, chickpeas and tomato-zucchini stew without ceremony. As badly as I felt, I decided I deserved extra cheese on my dinner. A lot of extra cheese.
I closed up the house at around 7 p.m., with the temperature starting to drop. Tonight’s the first night that turning the oven on has felt like a welcome idea. I put some figs in to roast, and pulled from the refrigerator the bag of shelling beans I got from John on Saturday. I sat down to get them out of their pods.
He had told me there were three types; I put three bowls in front of myself. I quickly found three types, then four, then five; I incorporated two similar types into one bowl, then two into another.
The pods were of varying maturities. Some peeled open easily and the beans fell into the bowl almost without effort. Others I had to pry open with great attention. Every so often I misjudged the amount of force needed, sending a loose bean careening into space in a grand arc. The cat watched one fly and sniffed it on landing. It was swiftly deduced that it was clearly not cat food nor a cat toy and it and subsequent missiles were disregarded.
I combined one batch of beans with another, coming down to two bowls. Eh, I figured, even if they have different cooking times and some get softer than others, they’ll still look pretty together.
The warmth of the oven began to reach my spot at the table, warming my back. I sat shelling, aware of the darkness gathering outside and the rising smell of the roasting figs with a sweetness like a batch of molasses cookies.
The beans went in a bowl and the pods went in a growing pile. I thought for a long time about a friend struggling with a still-evolving problem and the difficult decisions that lay ahead. I thought about how much more pleasant it is to think on others’ troubles than your own, and how much easier it is to solve others’ problems in your mind than your own.
The last of the pods snapped open, I looked at the two bowls. I decided the difference between them was not really important. I combined them into one.
I got up and took the figs out of the oven and watched their edges curl around their flesh as they cooled.
I decided I would cook the beans plain, with butter.
About my absence: I am just swamped at work and it’s keeping me from doing much else. I’m not even cooking…Chimp has been keeping us fed.
Saturday was the first sweaterday at the market since the spring. It sure was nice.
I picked up some of these beans from John of Flower Garden of Madera. He said they’re three different types – I need to shell them still to find out what I’ve got.
I got a pint of jalapenos from Michele, thinking Chimp would certainly find something to do with them. He loves cilantro, lime juice, jalapenos, garlic and salt buzzed together into a fresh seasoning, as do I.
I also picked up another eggplant! I’ve been making this dal recipe that’s just been great – one more try and I think I’ll have it perfected.
After I picked up the box last night, I was too swamped with cooking and work to get to this then, so here it is on Thursday lunchtime.
We have in the box this week:
Red Roasting Potatoes (Wonder if these will be as incredibly sweet as the Yukon Golds from last week?)
Sweet 100s Cherry Tomatoes
Nakata’s August Red Nectarine (These will probably be the last nectarines I’ll eat this year. Where did the season go?)
Soghomonian’s (Three Sisters) Ribier Grapes (big, black, seedy and sweet)
Fair Hills’ Gala Apples (I’ve resigned myself to the fact that apple season is here – I don’t like it yet, but I’ve at least accepted it.)
Baby Leek (Not “leeks” but “leek” – as you can see, there’s one diminutive leek in the box. I tucked it into the bag of shallots and onions I have in the fridge because when I went to wrap it up all by itself it looked so lonely. I guess it’s because it so resembles a scallion, and both they and leeks usually come in bunches with all their friends…)
Italian Frying Peppers
When I was driving over to get the box I was absolutely exhausted from the day’s several long phone calls for work. I had some dal in the fridge, but I’d already had that for lunch, and I was trying to think of what I could possibly manage to make for dinner, considering that at that moment I could hardly stand up.
Once I opened the box I was relieved to see its contents. Summer vegetables are so easy to work with. I knew I had some cooked chickpeas in the fridge – this is like having cooked chicken breasts for an omnivore, I think, in that they can go any which way. I minced some garlic, chopped up some plum tomatoes I’d gotten from Michele on Saturday, a zucchini and some basil from the box, started some water boiling, and in no time was enjoying a little tomato and zucchini stew with chickpeas over whole-wheat pasta.
“A good dinner doesn’t have to be complicated,” I thought.
Looking at what was in the box, I also decided to whip up some whole-wheat pizza dough, making another iteration, with another small change, to the food processor-kneaded recipe I’ve been working on perfecting all summer (it’s almost there, I swear). By the time I was done with dinner, feeling refreshed and had put the food away, the dough was ready to be made into crusts.
I topped the pizzas with sliced plum tomatoes and frying peppers from the box plus some onions, and a nice layer of fresh mozzarella and Dry Jack cheeses. (I had to photograph this pizza under a mix of incandescent and florescent light, which is not very flattering…I tried the “night portrait” mode on my camera too, but it made the pizza look like a deer in the headlights somehow.)
Sometimes I surprise myself. I thought I was going to come back with the box and be forced to collapse for the evening, but a little dinner and a little rest really helped. When I went to bed last night, I was feeling some of the feeling of tiredness after an active day, which is so pleasant as compared to the all-encompassing exhaustion that I constantly carry around to varying degrees. I can tell today that I pushed myself a little too much, but I’ll take it easy and hopefully I’ll stay on an even keel tomorrow.
When Chimp came home from work late in the evening, I said, “You only have two choices for dinner. I made a chickpea stew with tomatoes and zucchini, or there’s pizza.”
“Pizza?!” he said, dropping his bag and heading for the kitchen.
“I knew all you’d do was complain,” I told him.
Frankly, given how often I make this, it’s hard to belive it hasn’t made it to the blog before now.
This is one of my favorite dinner salads. We make it in spring, when the first radishes appear, along with green onions and green garlic. At that time of year, it tastes like a spring tonic after a winter of cooked green vegetables. The salad gets a rest during the height of the summer when the heat is too much for radishes here, and then it returns with the fall crop. This time of year, we use mature onions and garlic, and it’s a reminder that the days are starting to gather in.
Part of my love for this salad is that it’s super-easy – if the chickpeas are already cooked, it’s just a little chopping and getting the dressing ingredients into the food processor. Sometimes I’ll toss a little cooked grain into this salad – bulghur is my favorite, but quinoa or millet or even some cold brown rice would be nice. I do that – as I’ve mentioned before – because the grain picks up the dressing nicely and also gives the salad a bit more heft and a pleasant chewiness.
We had this with Yukon Gold potatoes from our CSA box that I roasted with olive oil and tossed with lemon juice, parsley and garlic after they came out of the oven. They were the sweetest-tasting white potatoes either of us had ever had.