Jenett's guide to getting her brain back.

[jenett]

(This is the post I've been swearing I'm going to make for about six months. This doesn't have everything, but it's good enough for now. Feel free to add stuff in comments, just be aware that there's places I'm glossing over details of why something does or doesn't work for me in here, for space reasons.)

Hi. If you’ve been reading my journal, you know there’s been Health Foo in my life for several years. Right now, two years and a bit after actually starting treatment for it, I feel mostly recovered. (Which is to say there are still some shaky bits.)

On the other hand, I’m able to work a full day, go home and use my brain for things. I can multitask functionally again. My executive function skills exist, and at almost the pre-Foo level. I can do complicated thinky things most of the time. Keeping on top of household stuff is no longer a huge strain. I can set up for ritual, do ritual, and clean up after all on the same night (this is sort of huge. It was a 4 day process for a long time). I can travel for the weekend without feeling entirely wiped out for a week after. So, on the whole, I call that really good.

[It is not perfect, mind you, and I’ll get to that. Just much improved.]

What I’m interested in talking about is how I got from totally non-functional to here, because the way I did it is a) involves a lot of stuff no medical professional even suggested (though I do also take medication) and b) might be useful for a bunch of people in similar positions. Take what’s useful.


Diagnosis:
My actual diagnosis ended up being hypothyroidism and Vitamin D deficiency. (On top of existing diagnoses of asthma and migraines, both of which I manage almost entirely without medication these days.) I take synthetic thyroid hormone every day, and I take a massive dose (50,000 IU) of Vitamin D twice a week.

You can read a bit more about symptoms and background over in a post I made in January, but here I want to focus on actual troubleshooting.

The other part - the thing that wasn’t diagnosed - is that I’m pretty sure that I blew out much of my adrenal function and reserves in the process. Which, y’know, I don’t recommend.

About six months after I was diagnosed, my contract (as a school librarian in an independent school) was not renewed. I spent just over a year unemployed, and have spent the next year working in awesome new job that I admit fits my life much much better. (Starting with the fact that it’s a forty hour work week, not the assumption you’ll work 50+ hours, with at least a couple of 10+ hour days every two weeks due to meetings. And I now live half a mile from work, so there’s no commuting stress.)

Stuff I was already doing that helped
Because of the migraines and asthma, I was already pretty good at self-monitoring and self-care. (Both of those give you really excellent incentives to figure it out, and rapid feedback if you mess up, too.)

Lack of sleep is a migraine trigger for me, and has been for 20 years, so I’ve always been especially attentive to quality of my bedding, how much sleep I’m getting, etc.

Big problems:
So, what were the big problems?

Total exhaustion.
Of the “Can I lie down in this sub-zero parking lot and fall asleep” variety. Everything was exhaustion, everything was tiring. And sometimes it was worse than that. I also went through about a year where even very light exertion made me very lightheaded, and needing to sit down.

A lot of brain weirdnesses, some of which are not discussed as symptoms directly.
Fuzzyheadedness and thinking a lot slower than usual are both noted symptoms for both thyroid and vitamin D deficiency, but I also lost pretty much all of my executive function skillset. Which is really weird and really annoying if you’re me and it’s always been a strength. (And it was really weird, too: it was like a lightbulb flickering for a couple of weeks, and then just burning out.)

My ability to multitask also went to pieces - I couldn’t be on IM or real-time chat and do *anything* else for a long time, even something like watching a movie or reading casually. Now, I’m back to having chat up, but also writing in the background, working on other projects, etc. (though I still turn chat off if I want to really focus, obviously.)

And the very weird and annoying one was that any interruption - a phone call, someone asking me a question - would mean it’d take me 10-20 minutes to get back into what I was doing. (If you are saying “Jen, isn’t that a bad fit with a job where you are sitting at a library desk and helping people with things while trying to create resource guides, do paperwork, and so on?” the answer would be “Yes, yes it is.” One of the reasons the current job is so awesome is that it has very few interrupts.)

I also had a bunch of other things - clumsiness when tired, a tendency to migraines, a few other things - that have cleared up with treatment and whatever else I’m doing. It’s worth noting here that there do seem to be links between thyroid issues and migraines for some people. My migraines are a lot better (in both number and level of neurological disruption) since I started thyroid meds.

Appetite, nausea, and related food problems.
This bit is thankfully a lot better, but during the “What’s going on here” and the first six months or so of meds, I a) was not eating much and b) having mild but really persistent nausea a lot of the time.

The huge complication here is that even when it would have been really helpful to have someone do grocery shopping for me (and there were people I might have asked for something specific like that), I couldn’t, because I had to wander and do “Which foods do not make me feel utterly miserable this week?”

(Things I’m still irked about: between late September and mid December 2009, I lost 35 pounds. You’d think a doctor or two might comment on that, but no. I gained it back to where I was, which is, yes, overweight by every chart in existence, but stable. I love my current doctor’s office for asking about unexpected weight loss or gain as part of their pre-exam questions.)

These days, there are still some complicated things about food, but they are in the category of “I can handle.”

Temperature modulation issues
I had a huge number of issues with feeling cold a lot (a common hypo symptom) but also having periodic hot flashes (bad enough to wake me up at night.)

And I had to start wearing socks. For the first time in my adult life. I resented this a great deal.

Natural fiber clothes helped. A lot. My usual clothing these days is a plain/more dressy cotton t-shirt and skirt, and I adore Land’s End for making draping cardigans that are exactly the right weight for an extra layer for me.

And, not venturing too much into TMI territory here, but a bunch of menstrual cycle issues
(They have now sorted themselves out, but I had everything from flooding to never-ending light bleeding to no period for months and months in this 3 year span. Not the most fun ever.)

Also a bunch of other things:
- hair and skin and nail changes.
- major difficulty driving (it was both extremely tiring - I wasn’t processing information easily - and I was much more light sensitive at night, so headlights were horrible.)
- some weird but noticeable to me shifts in writing and typos. (Mostly not visible to other people, because I edit well on the fly.)
- lack of focus (which fits with the brain stuff. But at its worst, I couldn’t read light fiction for more than 5 or 10 minutes at a time.)

So, what helped?


Big things I’m glad I did

1) Pushed for treatment, and brought help.
It took me about 8 weeks between “There is something really wrong here” and actually getting in to see the endocrinologist who looked at my list of symptoms, suggested Vitamin D, and was willing to try me on thyroid meds.

The thing I did that got me there (because my actual bloodwork did not look as dire as I felt) was bringing my friend Elise with me to push for a referral. Bring someone with you who can say “This stuff, here, is weird. There’s something wrong.”

2) Kept good notes
Mine for the endo included:
- Symptoms (in detail, with numbers where I could provide - I was tracking how much nausea I felt, how exhausted I was, how bad my focus was (on a 1-10 scale), as well as number of hot and cold flashes.
- A previous ‘ordinary day’ compared to what little I could manage at that point.
- Lists of self-care stuff I was already doing (I’m generally very good about hydration, sleep patterns, etc.)
- And of course, other medical details (existing conditions, treatments, etc.)

3) Feldenkrais work
I wrote about this extensively elsewhere, and I’m not going to repeat it, but I am going to say here that I’m pretty certain my Feldenkrais work saved my sense of sanity, my sense of self, and made sure I got back together as quickly as I did.

I started in May of 2010 (just before I lost my job, and about 6 months after the worst of the health foo hit), and continued until I moved out of Minnesota. (I did see my teacher/practitioner when I was there in March of this year, and expect to try to for future visits, too. He’s awesome and if you’re in the Twin Cities and interested, I will so cheerfully refer you.)

What I knew then, when I started, was that my body was crying out for a mechanism to connect brain and body again: the health foo made me feel like nothing worked like it used to. Swimming helped a bit (the sense of pressure against skin during movement made a big difference to me), but Feldenkrais was even better.

I think that a number of body modalities would have helped - but Feldenkrais is handy because it’s specifically designed to build that kind of connection, and because the process is fairly gentle on the body. (I had a few sessions where I’d be sore, stiff, or achy afterward, but very few.)

It also felt amazingly good (especially the first six months or so, when it felt like everything I did went wrong and I’d never get my brain back) to get feedback that I was learning stuff, and picking things up and making connections.

It also was - like counselling therapy is for many people - really good for me to be talking to someone who wasn’t purely a social friend once a week. I didn’t need someone to help me sort through my brain, precisely, but having a fixed appointment I had to be at, where he’d ask how stuff was going turned out to be very useful to me.

4) Wool mattress pad
Seriously. If you’re having temperature modulation issues, consider one. Really. It is worth every single penny. Triple that. Also if you have ache/triggerpoint/etc. issues. (One of my goals for this coming year is to get around to getting a comforter to go with it.)

It took me from getting woken up once or twice a night with hot flashes to not waking with them. And it helped a lot of the aches/pains/ick otherwise. (Also: both the cats who’ve lived with me while I’ve had it think they’re awesome.)

5) Rest
One of the things I did as my brain started coming back and I could research again was look at stuff like what I was dealing with. One of the best pieces of advice turned out to be from a chronic fatigue site, which suggested lying down and resting periodically, even if you’re not exerting yourself much otherwise.

Turns out this was *really* helpful. Lying down for 20 or 30 minutes rather than sitting turned out to be amazing useful to me. (Their advice was that you want to be lying there: listening to music/audio books is fine. Closing your eyes is fine. Reading is fine for some people - including me - but not for others, and don’t pick anything too stimulating. I still make time for this when I’m having a bad day or week, or when I’m doing stuff that requires more exertion (house cleaning, say, I’ll alternate cleaning, sitting at the computer, and then lying down for a little.)

I also spent a lot of the year I wasn’t working sleeping from about midnight to 9am, and napping for a couple of hours in the afternoon. (Being out of work did make that convenient.) I’m now down to needing a long nap every couple of weekends, and occasional days where my body just refuses to keep going. This is progress, really.

6) Swimming
I was swimming regularly through a bunch of this time, which - as above - gave me physical feedback my brain needed to rewire, but which also helped some with the temperature modulation issues. (I’m pretty sure it was being in water, not just exercise, but I can’t easily be sure.)

One reason to really like swimming was that - unlike walking - I didn’t need to make sure I could get home again after. I just had to make it to the end of the pool, and I could rest/float/etc. I need to pick it up again, really. I found it much easier to pace myself than walking.

7) Stretching my brain
I did a bunch of stuff to help my brain rebuild connections - I used a site called Lumosity that has games meant to build mental agility, flexibility, speed of response, and all sorts of other things. They’re designed to be fairly quick (taking 10-15 minutes most days) but to build demonstrated progress. The research behind them is interesting, and they have sequences designed for specific needs (including traumatic brain injury, ADD, and people dealing with chemotherapy side effects.)

It’s not the cheapest thing out there, but there are periodic coupons out for substantial discounts - it’s worth checking the promotion code sites. (I did a one-year subscription and let it lapse in January.)

But I’ve also built two massive projects on my own: my Seeking site for seekers in Paganism and specifically religious witchcraft, and the current Alternity Docs project work. Both have been ways to convince myself that my brain is working, and to suss out the ways in which it still needs improvement.

(If you have not figured out by now that my sense of self lives in my brain, consider yourself informed.)

8) Cleaning service
Finally, I’m very glad that during the worst of it - the seven months or so I was miserably exhausted all the time - that I had a cleaning service come in. There’s still some kinds of cleaning I need to plan very carefully. (Anything involving bending over for an extended period tires me out more than other stuff), but things are much better now.


Tips and tricks:
Simplify wherever possible
My current clothing is very boring (either a plain color nice knit t-shirt and black skirt, or a black t-shirt and colored skirt - all my ones in current rotation are the Deva Lifewear circle skirts).

There’s a reason for that. I don’t need to sort colours for laundry. I throw everything in on hot, and everything hot to dry (which I do to help control allergy issues) and I don’t think about it. And when I am tired and slow-brained in the morning, I don’t have to think about what goes with what. One color, one black. Likewise, I have four pairs of shoes. (black sandals, black flats, black dress flats, and snow boots and the only thing I have to pay attention to is the basic weather conditions.)

And I am trying very hard not to Acquire Stuff. Stuff requires attention and dusting and so on. And I’d rather spend my time elsewhere. So I only acquire New Stuff as a replacement for Old Stuff That’s Worn Out, or because I have specific ongoing need for it.

This is a little boring, but it really does save me about 10 minutes + several more decisions most days, and that adds up really fast.

Be really clear about my priorities
This is crucial, but hard. I’m really clear with myself that I need lots of downtime, and that I need to be cautious about weekend plans still. (To the tune of “One thing that involves more than an hour’s drive and/or notable exertion every 3-4 weeks, not every week.”)

Pottery instead of glass
I mentioned that I have weird bouts of clumsy when I get overtired, right? I broke at least five glasses before I figured out that if I used pottery mugs I was a) less likely to drop them in the first place and b) if I did break them, they broke into larger shards I could see, rather than tiny glass pieces I (or the cat) might step on. I use them for hot liquids, cold liquids, and everything in between.

Most of mine are from Dancing Pig Pots, who make awesome mugs, but there are many other options out there.

This is particularly relevant if, like me, you live without a dishwasher. But I recommend it to anyone who’s got similar issues.

Opportunity food
This is the term my friend Elise and I use to refer to the stuff that doesn’t take much attention to prepare or eat. Some of my standbys (I’ll note I don’t own a microwave and haven’t for about six years, or my answers to some of these might be different.)
- hummus, tzatiki, or similar things with pita bread
- canned soup
- the foil ‘reheat in boiling water’ bags.
- tomatoes and fresh mozzarella (usually with a little olive oil, basalmic vinegar, and salt)
- cold cuts
- hard boiled eggs, if I make them before I need them.
- cheese
- bottled fruit smoothies, kefir, packaged yogurt, etc.
- And while I was living within reasonable distance of a Trader Joe’s, most of my food shopping was there. (They are really good for “heat this and eat” foods that are not full of chemicals I’d rather not eat, thanks.)

In practice, ‘food I make myself and that goes into the freezer’ is weirdly not opportunity food. It takes too much thought to reheat when I’m in a state where I need it. (This is where a microwave probably would help). Also, in practice, I find I won’t pour some things out of larger containers, but will grab a small self-contained one and a spoon. (On my worst days “locate clean bowl and rummage in the fridge” is still too much.)

Bodies are weird. Brains are weird.


So what’s not better?
First and fundamentally, I don’t trust my body
Which is annoying. That means that if I’m dithering about doing Awesome Thing, but Awesome Thing involves an hour+ drive, I don’t go if I’m not sure I can make it back okay. (Since I live at least an hour from places with Awesome Things that are not my small town, this is sort of annoying sometimes.)

(It’s made getting involved with SCA stuff up here tricky, because most of that is 60-90 minutes, for example.)

This is slowly getting better as I do more stuff and things don’t break horribly. But I suspect I’ll continue to be cautious about it for a good while.

Walking
My current reliable limit for walking is still only about half a mile at a time. There are days a mile’s fine. I’ve had days at a time when I do five miles in a day (yay, pedometer - while travelling, that one.) There are days stairs are fine. There are days stairs are impossible.

The unpredictability is annoying.

I need to allow tons of recovery time
I am, in fact, a little worried about this month, because I am:

1) moving (3 doors down from my current place, and I don’t have tons of Stuff, but still)
2) going to be at a convention (and being Sensible Reliable Person) for 5 days, with accompanying travel (hour drive, 3 hours bus, plane flight)
3) going to another convention in early August (5 hour drive, and a bunch of walking.)

All of which means I’m front-loading the moving part this week as much as I can, so that all I have to do in the second half of July is clean the old apartment (which, thankfully, won’t be *too* dire.)

I still need periodic lengthy naps
It would be helped by getting to bed earlier, but a combination of one of my hobbies, and a cat who believes in tearing around the apartment just when I would like to be going to sleep does not help this. Still working on that.

Food
I am not doing as well with an entirely balanced diet as I’d like, largely because when my brain gets fried, it’s hard to think through it. I’m doing better, partly through prepping stuff I just have to heat and eat. (This weekend's prep: hardboiled eggs and turkey/spinach/feta burgers to freeze)

But there are also foods I avoid either as much as I can (soy) or raw (crucifers which leaves out a lot of salad options) or where I just get sick of the easy simple options. (I like carrots, but when that’s the easy raw-food snack object for months, they get a little tiring. I am happier now we’re getting decent tomatoes again.)

And I'm also trying to avoid grains when I can, so a lot of the "make pasta" variant dishes don't suit what I want. (Winter was easy: soups and stews cover a lot of territory.)

Driving
Still tiring. Much better than it was (the fact that there’s no traffic for about 2 hours from me most of the time doesn’t hurt.) But still, I need to factor being able to get home into whatever plans I make.

Comments

[leanne]

I am so glad to hear you're doing better! *hugs* And I wanted to tell you that it's helpful to hear what you're dealing with. I am having not-the-same-but-really-annoying physical problems with sports injuries and it's kinda nice to know I'm not alone in having to pay close attention to my body, although what you're dealing with was completely different and much more severe. It gives me a sense of "this can be managed." Thank you.

For salad options, do the bagged salad mixes work OK for you? I find that salad mix + dried fruit + nuts + cheese bits is a quick and easy dinner, especially if you have vinaigrette in the fridge already. And you get a lot of variation just by changing your fruit, nuts, and cheese to whatever you are in the mood for.

*hugs and love* Wish we were closer together -- I'd be glad to play chauffeur on occasion and drag you off to SCA stuff, but it's pretty hard to get further apart and still be in the US! (:

[jenett]

On the managing - well, I had excellent examples ahead of me. elisem and synecdochic, for two.)

The problem with salads is that I shouldn't do raw kale or spinach (raw crucifers have a chemical that inhibits thyroid function that mostly goes away when cooked. I feel better when I don't eat them, anyway. Or at least, save those servings for strawberries, which have the same chemical.) I do kale chips when I'm up for having the stove on, for example.

And a bunch of salad mixes have one or the other. (And iceberg and romaine are fine, but not exciting, y'know? Or particularly useful with other nutrients.) Plus the whole problem of living by myself, and unless I want salad All The Time, some of it will go to waste and/or require another shopping trip. (The grocery store on the way home has one kind of bagged mix, but it's not labelled, so I am not fiddling with it until I'm through other stresses on the body this month.)

[leanne]

Ah, I didn't realize spinach would be a problem. That does let out a lot of the spring mix stuff. Too bad. /: And yeah, iceberg is boring and Romaine is great, but not all the time, it gets dull. And of course you can't freeze it. *ponders*

Have you had the raw zucchini salad? Dirt simple -- you slice really good zucchini or summer squash razor-thin, then just add a bit of minced garlic, salt and pepper, good olive oil and balsamic. It keeps reasonably well for a day or two, too.

long drives..

[eldriwolf]

I have no idea if this would help you--but it has saved Me more than once.

I know one cannot 'just switch cars'---but if/when you get a different ride-- perhaps think about something you can *comfortably* take a nap in. (as one of many things to factor in)

--I have a little (Subaru) wagon with camping pads under old rugs(mostly for the dogs) The sleeping bag lives in the car Anyway, as part of the 'emergency kit'.
I have crawled back there and stretched out plenty of times-
-I pack it so I can lay down *without moving things*.
---Because even if I am going camping, I might be too beat to set-up, when I get there.

Re: long drives..

[jenett]

My current car would do that, but it's not a particularly good situation for most of the times I might need it (both because of quality of sleep issues, and because of other considerations - one can scarcely nap in a car in winter climate comfortably or safely, for example, without a lot of careful planning.)

And there's all the consideration of meds/cat/etc. that mean that for a purely social gathering, it's tricky. (And the moreso for, say, SCA events in Bangor-area on a weeknight, when I have to be at work the next morning. Because being awake early enough to drive back would be a problem, whether I stayed in a hotel or the car.)

I do generally keep enough with me that I could manage if it were that or a seriously unsafe situation, but not for "Hey, I'd like to go do this social thing I don't *have* to do" sorts of things. Which is where I'm mostly stuck now.

[jinian]

Thanks, this is very interesting.

Maybe we've discussed this before, but spinach is not actually a crucifer. :) Certainly it has oxalic acid, though, which supposedly isn't great for letting your body absorb iodine. Arugula and mizuna and such are crucifers, so salad mix is even more of a problem thereby. It's too bad commercially available lettuces are usually so boring.

Trader Joe's snow peas for all seasons might make a good snack to change up the carrots with, if you like those.

[jenett]

:grin: Correction is good. (And yeah. It's a weird set of foods that show up on the "may interfere with thyroid function". Strawberries also not a crucifer, but apparently do the same thing.)

I do in fact have snow peas in my fridge at the moment, but alas, the nearest Trader Joe's is 2 hours from here, which means it's an occasional trip, not a regular one. And I haven't seen them reliably at my local grocery out of season.

[baratron]

Do you have a link to a Reliable Scientific list for "the foods which may inhibit thyroid function"? I'd like to pass it on to my mum (and she's the sort of person who might believe Patrick Holford-style psuedoscientific bullshit). Thanks.

[jenett]

My original list came out of a book I don't have easy access to right now.

In general, I think Mary Shomon at About.com's thyroid section strikes a reasonable compromise between "good scientific evidence" and "pseudoscientific" (there's a bunch of places I disagree with her, too.)

She's got several articles on this, but...

http://thyroid.about.com/b/2006/09/20/dont-like-certain-veggies-it-may-be-your-thyroid-talking.htm - references a study that indicates people with thyroid issues may naturally avoid these foods, due to bitter taste receptors working a certain way. (I'll note that I like some of these foods, but there are others I just don't have a taste for.)

http://thyroid.about.com/b/2006/09/24/those-antithyroid-veggies.htm - followup post with the list of tested veggies.

http://thyroid.about.com/od/symptomsrisks/a/All-About-Goitrogens-thyroid.htm is a more general post with a longer list that includes peaches and strawberries.

In practice, I avoid soy whenever I can, and definitely soy protein. (Soy oil is in a bunch of prepared foods over here, and I am not, say, fanatical about trying to avoid it in restaurants. But I buy stuff without it when I can, and I limit foods that have it in. I'm happy there's a canola mayonnaise out now.)

I'll eat broccoli, cauliflower, kale chips, etc. but try to avoid eating them raw, and try to make sure it's not a huge part of my diet (if it's the main bulk of a meal, I do feel my brain fry a bit, and some other symptoms: if it's, say, broccoli in a casserole dish with a bunch of other things or even in soup, it's usually fine. (I have a theory that my body does better processing it when eaten with dairy and protein). But I also refuse to give up strawberries (which do not seem to cause me problems eaten at the level my budget allows for good strawberries - neither do canned peaches, incidentally.)

I'm sort of working up to doing a much more controlled food trial of "Ok, what does work for me" but I need to have sufficient brain and stamina and a useful baseline (and not much travel) for a month or two to do it right.

[leanne]

Wandering back to the "tired of raw carrots" thing briefly, how does eggplant sit with you? Just thinking that a container of baba ghanoush or occasionally broiling a batch of eggplant strips for later (top with olive oil and balsamic, yum) makes for decent quick snack food. At least if you're me and you love eggplant. {:

I'm assuming you're not a celery fan since you didn't mention it. Mark is sadly not a celery fan. I prefer celery to carrots and will contentedly snack on "bugs on a log" at the drop of a hat.

I honestly have very little idea about the thyroid interference with vegetables. I took a look at your list. My Mom has had her thyroid removed, but she's on a synthetic replacement hormone, and doesn't seem to really have changed her diet at all. o_O

[jenett]

I like the idea of eggplant. In practice, I never seem to remember to cook it. Or buy it.

And yeah. I despise celery. Won't even buy it for mirepoix if I can possibly avoid it, even though I know it's supposed to be useful there. It's a very unpleasant kind of bitter for me (and I'm normally fond of a range of bitter tastes, just not that one), plus I have flashbacks to eating it with braces.

On the thyroid and foods - from everything I can tell, some people are fine with it. (And particular if they've got no thyroid at all, as opposed to mine, which is sort of working, sometimes, when it can be enticed.) So eating foods that really make it work harder is complicated, because the dosage I'm on is predicated on it working at a baseline. [1]

I also notice it's not so much general energy or other symptoms for me, but brain, and I'm still sensitive enough to other minor changes there (and optimise for brain over anything else in the first place) that I'd rather not spend the wiggle room I have on the foods I can avoid.

[1] Complicated of course by the fact that other stuff affects its function too. Multivariable problems, yay. Not.

[susan8020]

My substitute for all of those greens is chard, red-veined for sharp taste or other colors for mild.

It keeps forever in the fridge, and if it wilts and dries, then it's like dry nori seaweed. The leaves are big and sturdy enough to just rinse under running water.

It can be eaten more or less raw, or put under meat that's broiling to catch the drippings, or sauteed in the frying pan along with chops or scrambled eggs or whatever.

[susan8020]

As for instant out of the freezer home made stuff, we get small (8 or 12 oz) 'deli containers' at a local Cash and Carry. (They can also be ordered from various internet sources.)

We make a pot of whatever and put each ladle full into a separate container, and write on the outside with a Sharpie marker (oddly called a 'fine point').

We stack these in the door of an upright freezer. So there they all are, labeled, easy to grab and heat and eat from the container. (I can't imagine living without a microwave.)

The work can be spread over a few days: one day to chop ingredients, another to heat them in a pot, another to ladle into containers (which can be labeled in advance).

Most of these are one-dish meals (casserole, ham and beans, etc). Some are meat+veg and need a separate starch, such as bread or noodles or or rice (which I also make in a big batch then freeze in plastic bags, easy to break off a chunk as needed).

[jenett]

As noted - for some reason, there are days when digging something out of the freezer and reheating is too much. I've no idea why my brain does that, but it does, and the solutions I've tried haven't caught sufficiently. (The best I can tell, the glitch is in "open the freezer door and find something", not the reheating part, mostly.)

(I do freeze extra portions for other reasons, it just doesn't solve my problem in that particular moment.)

As to living without a microwave - six years in kitchens with almost no counter space and not a lot of additional space to work with makes one think about what you really want to use. It took me a little while to get used to, but these days I'd much rather have the counter space for a crockpot than a microwave. (I'm about to move somewhere with more counter top space, but I still don't think I want a microwave. We'll see.)

I also find that - when my brain isn't freezing up about reheating something - it helps me cook and eat better, because I can't rely on quick convenience foods (there's whole categories of heavily processed foods I just ignore now and can't even be tempted by.)

[susan8020]

"Open the freezer door and find something" has been a big problem for me too. Here's how I finally nuked it:
https://lh5.googleusercontent.com/-E-nSb7SPm44/TyoMs_tfZBI/AAAAAAAAAC0/mchZbaJnQok/

The deli containers in the door are all my home made single-serving, ready to heat things. I can just reach blindly and grab any one of them and it works, if I don't want to read the names I wrote on them.

[jenett]

Hey. It's okay that you found something that works for you that doesn't work for me. And I appreciate it that you're trying to be helpful.

But here's the thing. It's not helpful to me. Please - as it says in the first paragraph of the post - please assume that I've got good reasons for doing stuff the way I do, even if I didn't lay them all out. (Also, this was not a "seeking advice" post, it was a "Here's some stuff, some of it I never see mentioned, that helped me, in case it's handy" post)

To be more blunt: I live in an apartment, with limited storage and an apartment sized fridge (and no dishwasher, which affects some of the "what storage containers I want to use" choices). And *even if I had more space* and *even if I had a microwave*, your method doesn't fix some of the things that make "make a bunch of stuff and grab something" work for me all the time.

Been there, tried it, found it still fails two or three times a week. For me. If it works for you, that's great. But people and situations are different, and that's okay.

Why does it fail for me? First, some logistical issues: I have limited storage, I have no microwave (and honestly, expect I'll prefer to keep it that way.) Second, that sometimes - and particularly on the nights when "grab something and reheat is likely to fail" - either I want something specific because my body's craving it, or because that's the only thing that seems tasty. Either way, it requires a kind of freezer management that I'm not interested in doing. (partly due to that limited space)

What does work for me is, it turns out, avoiding the freezer for those days. Cans of soup are fine for me (I suspect because I can stack them in cabinets so I don't have to think about what I have.) The foil "reheat in boiling water" Indian meals are fine, as long as they seem interesting that night. (you can't over-reheat them, burn them, etc. which makes them handy if my brain is having a bad-sense-of-time day.) Keeping some kinds of fridge foods (Hummus, hard boiled eggs, mayo and tuna for tuna salad, cheese) works fine for me. And weirdly, some kinds of *oven* foods work for me when "reheat on the stove" doesn't.

On days when I want to cook, or am planning to be wandering around the kitchen tidying while something reheats, then "find something labelled in the freezer" is fine. And I do that, moderately, as foods produce leftovers, I make a big pot of stew or soup. But "have a vast stock of stuff and grab things all the time" just isn't my thing.

And again, that's okay. We don't all need to use the same approach, or eat the same way.

[syntaxofthings]

I like this "Pottery over glass" idea - pottery is prettier, too! Although I've shattered pieces of pottery before. I have to be pretty careful with the ones I have, since they're handmade by my flatmate's mother.

Being really cautious about what you do with your time: I am starting to learn that myself. It's ridiculously frustrating to have so many things I like doing, and realize, wait, I need to make sure I'm taking time to rest because I'm an introvert with an invisible illness and people aren't going to understand that unless I set boundaries on myself. So frustrating.

[jenett]

I love the feel of pottery, too. (I buy mine knowing I'll periodically drop some - though actually, I'm going on two years with all the current ones, I think.)

[pj]

I always described it like this, "My brain forgets my hand is still holding something." Yes, handles on cups are awesome. Sometimes I still fail at holding it, but much less frequently and with less dire consequences. :-)

[jenett]

Exactly. It's such a weird kind of clumsy, but pottery makes it all better. And is pretty!

(Seriously. Glass? Hard to hold. Slipper when wet. Has very little traction.)

[pj]

When I must do glass I choose stemware for more of a grip, but I try not to choose glass unless it is small enough to easily grab while putting my pinky finger across the bottom. While I realize my pinky finger is not known for strength it works as a reminder and when the glass starts to roll either side or push down hard I know to set it down.

This is all helped by the fact that my more frequent beverage other than water is coffee,second is tea. *g*

[jenett]

I found I had even more problems with stemware than with tumbler-shaped things, weirdly.

(A lot of the weird clumsiness was end-of-fingers stuff, so that probably isn't that surprising: something with a handle hangs off the center of the hand.)

[sine_nomine]

OMG, someone else has this issue? That's exactly how I used to describe it. Went through a whole period of dropping hot liquids on myself. It hasn't happened in quite some time but I remember feeling my brain go "thuk" a second before it happened so sometimes it was enough time to catch it. Usually not, though.

[kakiphony]

I'd love an overview of your turkey/feta/spinach burger process. Your meatballs post seriously made something I once found super complicated into something I make and freeze fairly regularly. (Ditto for that awesome old bread post back in the day.)

[jenett]

Yay! Glad that helps. The turkey/feta/spinach process is pretty much the same concept as the meatballs, just does not require heating the oven.

I eyeballed, but...
20oz package of ground turkey
6oz of frozen spinach, thawed and drained (half a package)
half a small container of feta (I think this came out to about 3-4 oz. I like feta.)
generous handful minced dried onions
generous handful bread crumbs
1 egg

(I did a double batch, which saves having half a thing of spinach and feta around.)

Mix everything together thoroughly. Shape into burger shapes (I got about 8 out of 20oz of meat, because the spinach adds quite a bit of bulk), and place on a plate/baking pan/other flat surface that will fit in your freezer.

Layer with something that won't stick between burgers. (Ideally waxed paper. I improvised with plastic freezer bags.) Freeze until solid (this might take overnight: a couple of hours wasn't quite long enough). Put into freezer bags and store.

To cook, put in frying pan (a little olive oil will help with moisture and browning) and cook until done - this takes about 6ish minutes a side for me from frozen, but I've only done a few so far. (And it doesn't take much attention other than flipping halfway through.)

Seems to hold together well, and the combo of the spinach and minced dried onion seems to work well to balance the moisture content.

[kakiphony]

Cool. I have a HUGE bag of baby spinach from my CSA and am thinking I might briefly sauté it, let it cool, and then use it in place of frozen. I need a way to use it up and some ready made burger (whether beer, venison, turkey, lamb or chicken) seems like a good plan.

Your instructions always seem to make sense to me in ways that loads of recipes do not. Perhaps because you give wiggle room?

[jenett]

Thanks! And yeah, maybe that's it. I am not a very precise cook most of the time, though I pay more attention when baking. (But even then, I tend to recipes where a little mismeasuring is not a big deal.)

If I were doing from fresh, I might slice up the spinach into strip-sized pieces (I didn't bother with the frozen, because it's a pain in the neck.) I did get some clumping of spinach, which I mostly consider a feature, not a bug, and of the four I've cooked, it doesn't seem to affect cooking much.

[faithinseeds]

Thanks for sharing the recipe. These sound really tasty!

[faithinseeds]

How do you feel about fresh green beans? They might be an option for snacking instead of carrot sticks. My mother makes a : variation of this salad, except she uses feta cheese in it, and adds chopped black olives. I'll dig out the recipe if you like. It keeps well in the fridge too.

[jennyrhill.livejournal.com]

I'd be interested to know more about the wool mattress pad- I get trigger points for sure and wonder if that might help!

[jenett]

Mine is from http://www.cuddleewe.com/ (they do mail order, but it looks like you'd have to call re: Canada.)

It's not cushy-padded-conforming like memory foam is, but instead it's more like having some give, but also a lot of rebalancing. (It comes more puffy, and will slowly compress over time, too, which is somewhat less of an issue for temperature control than joint padding, but I understand from when I looked at them originally that lots of people find the padding still useful. I definitely notice a difference myself.)

[estaratshirai.livejournal.com]

*nodsnods* Different issues but significant overlap. I am particularly nodding at "lie down when you can" and Lumosity. (Lumosity, besides the other help, is fascinating to watch as you, oh, say, change medications. When I halved my Effexor, my "flexibility" score crashed, stayed down for six days, and then zoomed all the way back up.)

[jenett]

It was you posting about Lumosity that made me go "I really need to just get that post up, don't I?"

(and yes, the penguins in the maze one is evil. I quite liked the "spot the flashing letter and the bird one", though.)

[witchchild]

some of this sounds like stuff I could use, as I also believe I'm in recovery from adrenal fatigue. The most frustrating part for me is feeling alright for a while, so increasing the activity level overall then quickly getting wiped out from it. Really, really difficult to handle.

[jenett]

Yes, exactly on the activity level. I find it really frustrating that one week X is fine, and the next week, X is way too much. (Or sometimes even one day to the next.)

I really need to pick up swimming regularly again, but I've been afraid for a while it might be one thing too much. August, maybe, so I can get used to the fitness center here before there are tons of students back.

[witchchild]

Tell me something, have you also had trouble with actually getting enough sleep? That seems to be an elusive beast for me now.

Last night I got in some time walking on the beach by Long Island Sound. Have seldom felt so good in years. There had better be some open water swimming for me this summer.

[jenett]

I did - stuff is a lot better now.

Things that helped were the wool mattress pad, a suitable body pillow, careful attention to other sleep considerations, and the Feldenkrais work (because it meant I was a lot less likely to wake up because something was sore.)

If you haven't had Vitamin D tested, you might also look at that: one of the pervasive symptoms is mild achiness, and I found that once that got better for me, I slept a lot better.

I also found the "lie down and rest" bit helped a lot even if I didn't actually nap.

[witchchild]

been trying to remember to do the lay down bit but I am too ambitious and want to do too much when I get home.

Never been tested for D, but I don't have the acheiness and I take fermented cod liver oil daily. So not too concerned with that as a possibility.

[carbonel]

Just an FYI: the link to the Luminosity page is malformed and doesn't work properly. Maybe missing its http?

[e4q.livejournal.com]

this all sounds really good.

when you are in flare up or set back mode you have to be prepared to scale things back, but pacing can actually help you predict your energy. you've already made a start with it, but i recommend reading about it if you haven't already. http://chronicfatigue.about.com/od/copingwithfmscfs/a/pacing101.htm

it SOUNDS like you are at a stage where you could be quite progressive with pacing. i am not at that stage yet, but think i might get there, since i am having fewer migraines. FINGERS BLOODY CROSSED!

[jenett]

I make a reference (in the resting bit) to having looked at some of the CF materials - you're right that they're very helpful at a certain stage (but I found it a lot more useful with where I was 18 months ago, rather than, say, now.)

The odd thing about now is that there's a lot of ways in which various medical professionals have said, flat out "Oh, you're much better now." Which is true. I can work a full-time job and still have a reasonable amount of brain/energy left at the end of the day.

I'm being careful this month because it involves some tricky stuff (a move, a trip, and another trip at the very beginning of August), but I am reasonably certain it will all work out fine.

The thing that's sticky, though, is certain kinds of exertion. Working a full day is fine, but work + noticeable exercise is still a bit much. And I am not very happy with that, because I would actually like to be getting a bit more exercise. There are still days - and they're not the CF flare pattern, they're driven by a range of other things - when everything moves in slow motion, or I just can't cope with cooking. Things like that. I have workarounds but they're not ideal.

[The sitting and resting, well. Just took a load of stuff to the new apartment, and have come back to sit down and knit for 90 minutes before I do another.]

[e4q.livejournal.com]

yes. EVENTS are tough.

i am also very with you about establishing a uniform. i used to love to play dress up. nowadays i mainly want to look passable while being comfortable. i am not working, so don't have to parse that set of criteria, but i still like to look credible as a human.

[ravens-tears.livejournal.com]

Wow! Thank you so much for sharing this Jennet! I was wondering how you were as I have always enjoyed your posts. I have also been experiencing many of the same things as you over the past 5 years. I was finally diagnosed as low-thyroid just over 2 years ago and Diabetic 1.5 years ago. Still making progress. I truly understand where you are coming from! I don't know if you have looked into eliminating or at least reducing foods with gonadtropines in your diet. They reduce thyroid hormone levels by causing estrogen levels to rise . I have very little soy or canola in my diet now and it has made a big difference. Just some food for thought for you.

Also wanted to thank you for the link to the wool mattress pads. The Bloke and I have been considering one for awhile now.

Take care!

[jenett]

I didn't talk much about food in the origina;l post, both because I think food's a very individual thing, and because a number of people on my friends list (me included) have bad past experiences with restrictive or prescriptive eating habits.

That said, there's some conversation in comments on the Dreamwidth post that might be of interest.

In general, though, I don't eat soy, and especially avoid soy protein (I worry less about canola, which seems to be better for me, and which mostly turns up in mayo among the foods I eat.) but in either case, don't stress about eating out (which I do relatively rarely.) And I avoid uncooked brassicas, and eat the cooked ones less frequently than I used to.

I've thought about being more deliberate about testing that, but it'd require a good stretch of time where I'm not likely to be travelling, and where the baseline other symptoms were likely not to be affected by other things. Perhaps this winter.

I have done testing for the markers for celiac (which for people who don't know seems to run alongside hypothyroid issues for a noticeable percentage of people - basically, it's "have one auto-immune disease? Why not collect the set!" on the body's part), and that seems not to be a problem: however, I feel better when I eat a lot less in the way of grains than I used to, so while I'll eat bread, I generally aim at meals other than pasta, rice, etc.