Diet & nutrition pt. 3, the practical part: Making diet changes work when you don't have the energy

Changing your diet requires energy, which most of us don't have to spare while recovering from Long COVID or ME/CFS. Sharing what worked for me, and mistakes I made

I’m not a doctor, nor a scientist, and the following is not intended as medical advice. I’m just one person who has (mostly) recovered from a severe version of Long COVID and has done a ton of research, sharing my experience and learnings. Please always listen to your body, and always ask your medical providers what’s right for you (in particular when starting a new protocol, such as making major changes to your diet).

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In the last two posts, I’ve been writing about the diet changes that supported my recovery. In part 1, I shared the science behind the nutritional changes I made (i.e., the why), and then, in part 2, what those changes were (i.e., the what). Today, part 3, is going to be about the how.

Changing my diet was one of the earliest things I implemented towards recovery when I first developed Long COVID, besides rest. This was about two months in, as I was able to do my own groceries for the first time after getting COVID, and right before things got significantly worse and I ended up mostly bedbound for months. With today’s perspective, I made the right changes, but I went about them in the wrong way - namely, I spent energy that I didn’t yet have. So if you take away one thing from this post, avoid the mistakes I made (see later in the post).

How to make a diet change work during Long COVID recovery

Making significant diet changes is not a small thing - it requires research, planning, grocery shopping, and experimenting with new ingredients and recipes - all things that take time, focus, and energy (maybe this is why some vegan or keto people can’t stop talking about their diet ;) Just kidding, I’m with you now!) The nature of the illness unfortunately means that we have less of those resources available than previously - very little energy and difficulty focusing are among the primary symptoms of Long COVID and ME/CFS. For many of us, getting groceries is absurdly hard and will require days of rest, if it’s possible at all. So how do you go about making major diet changes, like those I outlined in my last post, when you aren’t able to? And on an emotional level - when you’ve already lost so much to the illness (social relationships, ability to exercise, ability to go outside, income, career, hobbies, dreams for your future … I could go on) - how do you handle letting go of one of the last sources of joy you still have, eating the food you like?

Here are a few things that worked for me, both logistically and emotionally. Most importantly, you don’t want to make this an additional source of stress in your recovery.

On an emotional level:

• Think of the changes as temporary, particularly when you’re cutting things out. Knowing I’d be able to eat all of my favorite foods again, once I was recovered, helped me not be sad about it (it otherwise would have only added to the profound sense of loss I was already dealing with). It gave me something to look forward to, as well. Try to think positively of cutting things out, as supporting your body through this period.

• Replace things, versus just cutting out. Find a new go-to breakfast, new go-to snacks, new bread (a local bakery in SF sells a grain free one), etc. This doesn’t all need to happen in one go, do it bit by bit, replacing one thing at a time (see below in mistakes I made, too).

• Find things you actually like. Food is comfort, so make sure you find new things you are excited about. Turned out I love a specific dairy-free yogurt (shoutout to Cocojune!), and after finding that I ended up looking forward to breakfast (instead of being sad that I couldn’t eat my usual breakfast foods anymore). I also loved dates with walnuts as a treat. Non-dairy milkshakes (e.g., frozen banana and peanut butter with oatmilk) instead of ice cream. Pineapple turmeric smoothie (or healthy smoothies in general). Lentil bolognese with zucchini noodles instead of pasta. Lots of options.

  

  One of my many smoothie bowl experiments later during recovery

On a practical level:

• Lean on frozen fruit and veggies. Particularly, if doing groceries is difficult for you, or impossible because you’re house or bed bound. Frozen produce has relatively similar nutrients to fresh produce, and is much more affordable and easier to handle (doesn’t go bad and requires fewer grocery trips). I learned this from my rehab therapist in occupational therapy later on. Just make sure that it’s the fruit and veggies only, no other ingredients; or check the labels and find a few healthy pre-prepped options (most pre-prepped meals contain lots of sugar, salt and artificial stuff, which we’re trying to avoid). Please comment if you’ve found any go to options for frozen pre-prepped meals that work with an anti-inflammatory diet - it might help someone a lot.

• Meal delivery. I know I have huge privilege here - but if you can afford it, and live in an area where this exists, get healthy meals delivered temporarily. I found that Thistle (no affiliation) fit the anti-inflammatory diet recommended for Long COVID recovery really well, and so I heavily relied on this service for months. This is when I was already well enough to heat up food myself, but wasn’t yet able to stand long enough to prepare meals. I was lucky that my job’s employee benefits paid for a lot of it, so if you are lucky to have generous benefits through work, too, maybe that’s an option for you. Truth be told, I kind of hated the taste of these meals after a while, as they repeated over and over and over for months, but they did make things a lot easier during an extremely challenging period. And some of their food was actually delicious. Wondering if anyone has found other delivery options that work well, too, maybe even in other locations? Please leave a comment if so.

• Get some cookbooks on anti-inflammatory foods. Once I was well enough for it, I found exploring recipes enjoyable, and it gave me something to do with my time. Looking at paper cookbooks was easier on my inflamed brain than looking at screens. Once I was starting to feel well enough to prepare food myself again, it was fun to experiment. There are lots of books on the anti-inflammatory diet these days - I like the recipes in this cookbook, and this one (in German), this healthy ice cream book, this one on grain free baking. I’m still exploring here and always looking for new resources, so comment your favorite ones if you have any!

• Get support. Most importantly, my friends & family who supported me with food were super crucial to my recovery. There were months where I was barely able sit up for long enough to eat, and sometimes not even that. My mom made sure I had enough food, and she was ultimately the one implementing all of the diet changes, not me. My friend Craig often cooked for us both, many dozens of times along the way, and experimented with recipes and ingredients for months. He found new options that fit the restrictions when I got sick of eating the same things (a lot of the recommendations above were his discoveries). My friend Benjy did our groceries for months and also cooked and experimented for us (lentil bolognese above!). When my mom had to leave the country because her visa was up, my friend Iz helped us find a paid caregiver, who initially came every day to heat up the delivered meals, and was truly wonderful and a big support (I’m very aware of my privilege here - I was very lucky that I could afford her help, and I’m really not sure how it would have all worked out otherwise). Other friends and neighbors kindly brought food and worked around my new dietary restrictions. I could not have done it without all this support, and I’m very, very grateful. I hope you have deep support on your journey, too.

The mistakes I made (so you don’t have to make them, too)

There are a few things I’d do quite differently now, if I had to do it again, knowing what I know today. Maybe you can learn something from my mistakes. Most of all I’d say, go easy and be gentle when making changes.

• I changed my diet too quickly, too radically.

  • When I first made the changes based on Dr. Kuon’s book, I was still able to research and prepare food myself. I wanted to get well asap, so I went all in, immediately. This took a lot of energy and focus, at a time when my body had very low resources. So in hindsight, making a drastic diet change, having to figure out new recipes, new ways to cook, different groceries to shop (when I was still too weak to do my groceries at all) probably contributed to overwhelming my nervous system even more, and to a further slide downwards around that time.

  • I’d now do this much more gently and slowly, over months, rather than making a drastic and complete change to my eating habits in a single weekend, while severely sick (Ouch. I’ve learned a lot ✌🏻). I wanted to be back on my feet in a couple of weeks, not in months. Turns out, it doesn’t work that way. So be easy on yourself, make one little change at a time, nothing drastic. Give your body and yourself time and grace.

• I followed the advice too closely, too strictly, and I didn’t personalize it.

  • Once I had learned about leveraging diet for recovery, I wanted to do it right. Of course, I totally overshot. For example, the advice in Dr. Kuon’s book was to reduce salt intake. I didn’t adapt this advice to the fact that my diet was already pretty low salt, compared to the average US diet, and I reduced my salt consumption further (also, to be fair, this kind of stuff is impossible to gauge, if you’re not an expert). I ended up taking in very little salt at all, thinking that would help my body. In hindsight, I think this might potentially have contributed to my developing POTS during the course of Long COVID. I only later realized by trial and error that more salt was actually helping my POTS symptoms, and then I quickly course corrected and my POTS symptoms started getting better¹ (funnily, I realized this based on my friend Benjy’s excellent chicken soup <3, a story for another time).

  • So my advice here would be to make changes more one by one, go gently, no extremes. Listen to your body.

I had a conversation with

Amber Horrox

about this a few weeks ago, as I was preparing this post (check out her blog!). It sounds like she’s made very similar experiences, and she put the learnings a lot more succinctly than I could.

In her words:

My top tips when it comes to making dietary changes that support improved health (or the ones I started with in any case):

🔹 let the body lead

🔸 ease pressure to be perfect

🔹 recognise it’s not something (another thing!) to get ‘right’

🔸 get clear on your main objective (for me it was to reduce inflammation in my body)

🔹 make sure your objective aligns with what you want. What is it that you want? (For me, it was wellness)

🔸 when it comes to the doing, do only one thing at a time. Whether that’s a change in milk you use, a new supplement you take or reducing/cutting out a food group (like sugar, gluten or dairy). ONE THING.

I could not agree more.

So, if you want to start experimenting with diet during your recovery (or want to give it another shot), I’d suggest this:

1. Pick one or two of the changes I shared last time, ones that you feel you can implement

2. Implement them gently, building up your changes over time.

3. Celebrate the changes you’re making, and be kind to yourself.

4. Listen to your body as you do this, and adjust if needed.

That’s all I got here - hope these learnings are helpful. Curious, what as helped you make changes along the way?

And lastly - you might have noticed I haven’t been posting the last weeks. I’ve been deep in job interviews, I graduated from my 300 hour training as a Holistic Breath Coach (yay!) and I also led the first iteration of my breathwork for recovery program (I really enjoyed it and the feedback was that it was helpful. So I might do it again next year if I have enough time! Feel free to message me if you’re interested and I’ll keep you posted).

I’m hoping I can get back to writing more here in the next weeks, I still have a long list of things I want to share. Here are a few I’m thinking about - curious what’s most interesting to you?

Thanks for reading this far! Please let me know if it’s been helpful, and until next time. Happy holidays to everyone who celebrates!

Nicole

1. POTS is a really complex condition - so increasing salt might NOT be the right change for you (see recommendations from Dysautonomia International). I also don’t think getting over my POTS was as simple as increasing salt intake for me. It was one factor, but there were other things that helped, including a physiotherapy protocol that I based on the Children’s Hospital of Philadelphia’s POTS protocol (down-adjusted to my much lower capacity at the time, as even the CHOP POTS protocol was way too much for my body then).