Happy Jackson Snack Boxes #65

Broccoli-apple couscous salad, black olives, slices of mini chickpea meatloaf (from Nora Cooks), and orange slices reassembled as half an orange.

I made some couscous to round out what was in the fridge at the end of this week, mixed it with yesterday's broccoli-apple salad, and served that alongside other random leftover things. It worked out much better than such experiments often do.

It wasn't necessarily my plan, but something new and terrible had happened the previous day, in that the myasthenia gravis is apparently not content to attack me as it usually does, or to the same degree, and I had weakness in all four limbs with such severity that I spent the day in intense confusion about how to navigate this new development. It wasn't as bad as it could have been, but I couldn't use my cane because my arms were so weak. I couldn't lift a cup of tea unless I used both hands and concentrated, and it was challenging to use a fork. I had to pause to rest between bites. But I could boil water and stir couscous in it and leave it there, and I did have promising leftovers even if they didn't go together whatsoever, so I went with that.

I could type, so I stayed at work while I weakened (symptoms of myasthenia gravis tend to become more severe as the day progresses) and focused on making it a day to catch up on email, although there were some things I had to put off. My job often involves going into the closed stacks of the special collections library where I work and getting boxes down or putting them away, but I traded my shifts doing this with my co-workers and hoped for the best for when I had to do it later. I think this was what was probably most troubling to me about it, because I know if I have a day like this now I will have more of them in the future, and my brain was running on a hamster wheel of "how many days like this?" and "what if I can't work anymore?"

Fortunately, bad days aren't the majority of my life, but there was something about this experience that hit me somewhere deep, deep inside. I got home feeling utterly exhausted by my commute (pushing the gas pedal was like using a leg press machine, and using the steering wheel reminded me of a car I test drove once with no power steering). I had to stop halfway up to rest when I was crawling up my apartment stairs, and then I sort of collapsed emotionally, too. I had always said, when people asked those annoying sorts of questions people tend to ask of the chronically ill about whether I would be moving to a first floor apartment (Why does this matter to you, random person? Were you planning to visit me soon?), that if I had to I could just crawl up my stairs, but I had never actually had to crawl up my stairs, let alone pause halfway through crawling up them. I wasn't the chipper, optimistic "spoonie" trying to crawl upstairs. I was more the despairing, anti-inspirational story.

So whatever I was going to do for dinner that was going to produce leftovers for today, or whatever I was going to prep for today that wasn't leftovers (I have a dim memory of potato salad), it didn't happen, because I took a bath, put myself to bed at 8:00PM, and cried myself to sleep. The morning brought renewed strength--not like a normal person, by any means, but I didn't have to crawl anywhere so much as waddle--and I will fight another day.

You won't see many posts here next week; I have a lot of medical appointments and I'm working from home a bit and won't be packing my lunch for those days. See you when I can.


  1. I'm so sorry to hear about your bad day, and I hope your appointments will all go well; sending hugs <3

  2. I can't imagine how difficult this experience must have been for you. Trying to cope with the worst that your symptoms have been along with fielding questions from people that don't understand are exhausting on their own, but dealing with the emotional aspect of it just puts it over the top. I think a lot of people just think that coping with physical symptoms is where your energy goes but there is a huge emotional component as well and I can empathize with you there. It's so hard and I'm so sorry that you have to deal with all of this and I hope that you'll continue to partake in whatever self care that you can. I hope that you have the best week you possibly can and that every day gets a little better <3

    1. It's true--the emotional component is usually the hardest for me.

  3. That must have been so stressful, both physically and emotionally. I hope you appointments go well, and that you have better days. <3

  4. That sounds like such an overwhelming experience- on every level possible.
    I hope your medical appointments provide more answers than questions and that you’re able to be kind and compassionate to yourself.


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