Managing the Quotidian

This is my view of the world out the dayroom doors. That’s Bootsy Collins at bottom. The walls are really a pale taupe rather than a mauvey pink. My bedroom, unfortunately, is a mauvey pink. Please ignore the lace curtains, which are also from the previous owners. We’re saving up for grasscloth shades for in here.

A few people have asked me what I do all day.

What I do, of course, is tightly limited by my small store of energy. “Bedridden” describes me pretty well in general, but I do shift between bedroom and dayroom, and there are various, more specific ways of describing the severity of ME/CFS. There’s David Bell’s CFS Severity Scale, A. Martin Lerner’s Energy Index Point Score, and the Karnofsky Performance Status Score.  Cheney uses the latter. There are others too.

Each of these attempt to quantify what you can and can’t manage to do. It’s a natural way to go at the need to describe how ill you are – before I’d ever seen one of these scoring systems, I was doing so when I went to see my various doctors after being diagnosed. In my own mind, I thought I fell immediately to about 50% of my previous energy level when I first fell ill. By sometime in 2005, I’d recovered to almost 70%. I remember one day that year when Chimp and I were driving north on First Street in Fresno, and I said to him that it was such a relief to be feeling so much better – but that I constantly worried that I would get worse again. He tried to reassure me that I wouldn’t. Somehow I knew he was wrong, sadly.

When I went to see Dr. Cheney for the first time in the spring of 2009, he put me at a KPS 30%. That was up a bit from the darkest days I’d had in 2008. In 2010, after a year on his protocol, we agreed I was approaching a 40%. I do still feel like I’m making upward progress, but it’s mostly little things I notice rather than an enormous, obvious change in my activity level. So what does an approximate KPS 40% mean in day-to-day life? Here’s my approximate daily agenda, such as it is.

I wake up in my bedroom sometime between 9 and 10 a.m. It’s absolutely pitch black, with foamcore panels placed over the panes and blackout shades on top of those, because the tiniest bit of light will wake me, and I can’t manage to sleep wearing a mask. I pull the earplugs out of my ears, change into a fresh set of pajamas that are already sitting next to me on the bed, mark down what time I woke up in a small notebook to enter in my sleep and medication spreadsheet, and carry it out to my dayroom, stopping in the hall bathroom that’s between the two rooms on the way.

Having walked about 20 feet, I sit down on my dayroom sofa, wake up my laptop, take the day’s first round of pills and rub my morning set of Cheney’s gels on various spots on my arms and legs. Then I lie down on my left side in front of the laptop. I prop myself with pillows behind me and under my mousing arm to hold myself in position in front of the screen, because my body’s muscles are too weak to do so by themselves.

Chimp brings me breakfast, which consists of whole-grain cereal with soymilk and two things I’m ordered to consume by Cheney: a daily glass of kefir, which I don’t enjoy, and a piece of dark chocolate, which I do. The latter is my reward for choking down the former.

From whence I blog. I bought that maneki neko in the background on our honeymoon in NYC. It’s a money one. I guess I should have gotten the health one.

The table my laptop sits on is pulled up to the sofa, and I can read or type while lying down. The table is three feet in diameter, and it’s chockablock with stuff – on it I have almost everything I need over the course of the day.

My dayroom is on the back of the house, and out the glass doors I have a view of the backyard. It being early August, right now I have a view of a row of pink and white Roses of Sharon across the far end of the yard.

I spend most of the day reading. What I read varies from day to day. I do try to keep up with what’s going on in internet culture. It’s usually trivia, but for a long time, that’s all my brain could really handle – the sort of things you can consume in a few moments or a few minutes. I have a habit of bringing the best bits of the web I find back to facebook to share with my close friends and family. Having so much time on my hands, I enjoy using some of it to find things that will bring others joy and spark conversation. And cat videos, lots of cat videos, which I think probably annoy as many of my friends as enjoy them.

The backyard, with the Roses of Sharon along the fenceline.

I’ve recently found myself able to manage fiction again. It’s been about three years since I could do that. I still can’t manage to hold a book, though – it just takes too much energy. Thankfully, the rise of the Kindle, and the presence of so many older books on the web, means all I have to do is press page down on my laptop. I lost the ability to watch video and listen to music even earlier than I lost my book-reading capability. I can watch some video these days, but it depends very much on the type. A quiet documentary an hour long? Fine, with breaks. A three-minute music video with flashy stuff going on? No chance. Sadly, I still haven’t regained the ability to listen to music, which is especially depressing because I was for most of my life a prodigious music collector. It’s very strange to feel so disconnected from something I used to be so invested in.

I try to do a bit of writing each day, but I’m not always able to. Putting anything more than a short email down has to be done in dribs and drabs. I can manage a paragraph at a time, but my arms get tired pretty quickly. This means I’m not always the speediest at returning correspondence – or writing blog entries, obviously.

Another half-hour a day goes to going through my ebay saved searches. I used to be an inveterate thrift shopper, and obviously I’m unable to do that in my current state. so I have a bunch of saved searches that get matching results sent to me each day. I’m always on the lookout for mid-century lighting pieces for the house, and I have a few subjects about which I collect vintage postcards. I often put 1940s-60s women’s suits on my watch list -they were one of my favorite things to wear to the office, when I was working – but I rarely bid on them these days.

As with breakfast, Chimp brings my lunch and dinner on a tray, and I eat them lying on my side. I have an enormous collection of table linens, and rotating through them gives me a little change of scenery.

On good days, I’m able to go out to the kitchen and get a snack out of the fridge, which is about 12 feet away. If the weather’s nice – no warmer than 72 degrees, as my body’s poor thermoregulation means anything above that feels like 110 – I can go about the same distance out onto the deck, where there’s a chaise longue for me to park myself on.

I can sit up for a few minutes at a time, but I can stand up, standing still, for less than a minute. If I move my legs and lean on something, I can manage maybe another minute on top of that. That means that showers are out of the question. I also don’t have the stamina to wash my hair. So Chimp and I manage that together, doing a bath every third day. We’ve done it so many times now that the whole thing is practically muscle memory.

Because he’s my sole caregiver, he’s almost always home when he’s not on campus. I don’t know if every marriage could handle this level of dependence, not to mention this amount of togetherness, but it really works just fine for us. I’m always a little sad when the school year starts back up again and we don’t have the whole day together any longer.

After dinner, Chimp comes and sits with me in the dayroom. We talk a little, but mostly keep on quietly with whatever we’re doing that day. Near bedtime, he sets up my sleeping pills in little bowls – having them set out keeps me from accidentally taking more of them than I’m supposed to. I take the first round around 9:15, and after that we head the twenty feet to my bedroom. We do a very short course of physical therapy, focused on range of motion exercises rather than any real exertion.

Then it is time to amuse cats. Besides Bootsy Collins, who is included in my profile picture and the picture at the top of this entry, we have all-black Mingus and his black-and-white brother Coltrane. Depending on the day, we break out Da Bird (which Bootsy calls Mithter Bird), the Cat Catcher (which Bootsy calls Mithter Teathe), the Cat Charmer (which Bootsy calls Mither Fleethy Thing), or a laser pointer (which Bootsy calls, you guessed it, Mithter Lather). Yes, the voice we do for Bootsy does have a lisp – it’s caused by him getting his long fur in his mouth. To watch him attempt to wash his shirt front and haul his neck back getting the fur off his tongue is really hilarious. Besides the toys on a stick, sometimes we have a game of Catball, which is played by throwing bouncy foam balls up the stairs or against a wall and the cats fielding them on the rebound.

While the cats wear themselves out, Chimp and I catch up on the day. He tells me what happened in class, in meetings, and with what he worked on. We talk about the things we’re reading or watching apart from each other. We lament the latest failures of the leadership of our end of the political spectrum and express our frustrations with and outrage at the machinations of the other end. We talk about the bad decisions being made and the terrible things happening in the world and the awful places all of this is certain to lead. We find the humor in whatever is under discussion and often find ourselves laughing uproariously to the point of gasping for breath at some bit of sophisticated, silly, or indefensibly dark humor. This hour is the best part of the day.

At 10:30 or so, Chimp puts the foamcore panels in place, pulls the draperies closed, and we say goodnight. He herds the cats out of the room and closes the door. I get out a fresh set of pajamas for the morning, pull back the blankets, lie down on my right side, prop my body with pillows fore and aft, and turn out the lights.

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12 Responses to Managing the Quotidian

  1. Syn-D says:

    So raw and wonderful! Love ya joc…

  2. Flo says:

    Hi Jocelyn,

    I thought this detailed description of your day was a testament to the resilience of the human spirit, so I looked up some quotes on resilience. Here’s one by Maya Angelou: “Someone was hurt before you, wronged before you, hungry before you, frightened before you, beaten before you, humiliated before you, raped before you…yet, someone survived…You can do anything you choose to do.”

    It’s okay until you get to Angelou’s last line, and then it’s utter crap. It’s the same sort of thing you hear from some doctors, psychologists and physical therapists, who don’t understand that you really can’t “choose” to stand up for 15 minutes or go for a long walk or watch a “three-minute music video with flashy stuff going on.” Maybe your blog would help change their minds. Thank you for writing it.


    • Jocelyn says:

      Thanks for the kind words, Flo. I really am pretty happy, despite everything. I don’t think of myself as particularly inspirational, but I do think that human beings can get used to quite a lot of things, including this. I guess that it becoming normal is why I don’t feel it’s particularly noteworthly.

  3. Thank you for sharing your day, Jocelyn. It sounds very normal and also quite happy. I hope the time is coming when you can use this keen mind and your wonderful sense of humor to explore the wider world. I hope this more for the sake of the world than for you. I think you are happy as you are, but I also think the world will be diminished if you don’t share all your gifts.

    I am also interested in your experiences with GcMAF, and I hope you will share more. You are the first person I’ve heard of who is taking GcMAF sublingually.

    Patricia Carter

    • Jocelyn says:

      You’re welcome, Patricia! I do plan to write more about the GcMAF journey. The IRIS ate most of this month, and it kept me from typing for a good long while, but it seems to be easing off a bit now.

  4. kathy d. says:

    That is an amazing daily diary. That you can look out onto such a beautiful, peaceful scene, in spite of your limitations is very nice. If one must be inside all day, it’s good that your view is such a beautiful one. And you are very lucky to have such an understanding, kind and helpful spouse. You sound like you have a happy, mutually respectful and enjoyable relationship.
    Your excellent explanation of your symptoms and triggers for worse symptoms are helpful to me.
    I can’t deal with anything flashy or bright on tv or on the computer. I see your point on that. And for the last year I haven’t been able to listen to music — jazz or r&b, my favorites. I used to do that a lot but starting a year ago, I get an instantaneous headache if I put on music. Also, I forget to do it.
    If I overly exert myself, it takes days to recover or get back to baseline. The muscle pain gets totally out of hand.
    The sleeping issues which you described in prior posts resonated with me — this I say after getting NO sleep last night whatsoever, a few hours in the afternoon. (My body likes to sleep in the afternoon.)
    At times I have acceptance, at other times I still get impatient and annoyed at the limitations. I do, however, read mysteries, and follow online bloggers on this form of diversion and enjoyment. My books are often overdue at the library, however, as I can’t get there. Sometimes I blog on and other times I can’t. Sometimes my comments are well-organized, sometimes they ramble and get repetitive.
    I have spent nearly all of the summer in my a/c room, not able to even go into my building’s hallway as I can’t take the heat or lack of circulating air. I see your point about lack of temperature regulation, and I say “ditto” to that.
    Hope that you can continue to read fiction, a real pleasure, and to improve, certainly to enjoy your beautiful yard.
    Glad you have your feline companions to keep you company.

    • Jocelyn says:

      Yep, seems like we’re on the same page on a great many things. Thanks for the nice comment, kathy d. I’m sorry it took me so long to get back here – the IRIS got pretty bad and kept me from typing for quite a number of days.

  5. Margaret says:

    As someone who hasn’t experienced it, I don’t know how to understand that you can’t listen to music (I believe you, don’t worry, I just don’t know what exactly you mean). Is it tiring? Or just sensorily unpleasant? Or some combination of both?

    • Jocelyn says:

      It’s exhausting. Imagine being in a crowded, dark party with music playing loudly and people yelling over each other to be heard. It’s sort of overwhelming, right? You try to listen to the conversation you’re having, but there are so many signals coming in that your brain can’t handle them all. Just having music playing feels like that now to me. My brain can’t manage to process just music on its own successfully with the amount of energy it has.

  6. kathy d. says:

    Yes. That’s a very good description.
    I used to listen to jazz a lot, but then my cd player broke, and I NEVER remember that I can play it on my computer. It’s not only that, but the cd player was easy. Just put in cd and press one buttom. Computer: I have to sit down, put in cd, then find the player and deal with instructions. I never remember how and it is too overwhelming.
    Also, a year ago I began to get headaches when music plays. It’s a big loss to me as I love music. But I haven’t listened — although I inherited a ton of jazz cds — between the headaches (music is a big trigger) and the complication of the computer situation rather than a cd player.

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