Last night I went out for bingo, beer and a burger. 🍺 It’s the first time I’ve been out in months, except a few dr appts here and there, and the most normal thing I’ve done in forever. It was nice. 😊
Michelob Ultra is 2.6 carbs per bottle (I had one). I also had a large glass of water, and ordered a house burger (no bun, please) with sweet potato fries.
A great night out and still relatively low carb. 👌
Everything about it was hard for me. Just getting showered and getting dressed is a serious challenge. I’m in a lot of full-body joint & muscle pain. Any little thing wipes me out and brings on nausea, tremors, cognitive dysfunction, abdominal distension, swelling of the hands & feet, etc. But I did it! It just takes a lot of extra time (all day) then additional recovery time (usually 3 full days). 👀
Sometimes just the thought of going out is too exhausting… or I have to prioritize more important things during my few good hours: a little work, paying the electric bill, doing laundry or dishes, researching solutions or supplements during the limited hours I can actually comprehend (or handle screen time), dealing with the endless stack of medical bills 😳 etc.
I was a little nervous given it was my first time out in public in awhile. I worried I would fall, or get a bad case of the tremors, or otherwise embarrass myself or my daughter, but I did okay. I paced out the day with frequent rests and also took advil before I went.
I was still really stiff, my feet were already swelling by the time I got there, my head nodded involuntarily off and on, I got confused a few times – but I made it through the 2 hours and I don’t think anyone really noticed (or cared).
It wasn’t until I got back to the car to go home that I started to freeze up and the hard shakes hit me (like a violent tremor). Then I was in agonizing full body muscle & joint pain the rest of the night.
I don’t usually take advil (or anything for pain at all) but I took it again and elevated my swollen legs & feet, and watched TV until I felt “safe enough” to go to bed.
Living with Long Covid is really hard – and incredibly isolating. I can’t do things on a whim or on the fly anymore. Everything requires planning and preparation + scheduling in recovery time.
A simple outing (or vet appt, or Dr appt) can cost me up to a week of time.
I enjoyed my burger & bingo though 🥰 and especially the change of scenery! It was really nice to get out of the house, and to be invited and included again too.
I want to tell you something though, that really bothered me. Something that has been a constant topic & trigger for me lately. Something that hurts – worse than my body does.
As I took in the scene and the sounds, enjoying being around a group of people having fun, kids laughing, couples smiling, families & friends chattering, and servers gliding between tables with trays of food & drinks… I felt a ping of hurt – and over the silliest thing.
It wasn’t because of how lonesome I am, or how long it took me to get taken out somewhere and how hard and hurtful that’s been. It wasn’t because I’m so unwell and life is so much harder now, and that I miss being carefree and healthy and happy – or any of those things you might guess.
It was the food. All the way around me trays of fried pub food, friends sharing big platters of appetizers, the lady across from me diving into a (whole) burger with both hands wrapped around the oversized bun. Slurping sodas and the crunch of chips with salsa, plates piled high with carbs… and everyone smiling, laughing, healthy and happy, having a great time enjoying a night out, able to get up from their chair freely without assistance, moving about without obvious pain etched on their face – but with easy smiles, and not the least bit short of breath from all their buzzing around.
Yet every day (yes: every single day) I get blamed for having long covid or for my central nervous system malfunctioning, for all my current health struggles… because “I eat keto.” 🤨
There has always been food/diet stigma, and definitely “keto stigma” – and of course now: the stigma around getting covid or having longcovid is just as bad, if not worse.
I’m sure I’m not the first person that eats very low carb that’s heard something exactly like this, an excerpt from a letter I got this week:
It’s worth noting that this person does not eat with me, does not know what I do or do not eat on any given day, and is making assumptions about what and how I eat. I haven’t even been sharing many meals or food diaries for awhile now – for another reason entirely, which I’ll tell in a minute.
It’s also worth noting that I’ve had a heart ultrasound, worn two heart monitors, had a heart stress test, and that my heart is great & fine – my blood pressure and cholesterol are good, etc etc etc.
What she said is a common misconception, and I know it was written with good intentions. A lot of people don’t know the science behind eating very low carb or how it works, even though it’s been around for many decades.
But we have had ZERO communication about my meals, my medical test results, etc – and I didn’t ask her for advice. Long Covid is serious, and it is real, and to state the obvious: it is not caused by anything you eat. 🙄
I was SO excited to get a letter (!!) but that one bit canceled out every other thing she said. I just shut down when I read that part. Only because I’m getting BOMBARDED with this messaging from “friends” (and strangers) incessantly – literally NONSTOP. ugh…
Unless you have a severe case of Long Covid like what I’m dealing with, I’m sure it’s hard to understand. But I’m pretty sure you could eat pop tarts for every meal and chase them with liquor & coke and STILL not cause your entire nervous system to malfunction. 🙃
It’s silly that I allow it to bother me at all, notes like this (others have been WAY worse), or that I even noticed what other people were eating or doing while I was out. I never have before. I’ve always been one to “mind my own plate” – and I know through 17+ months of trial & error what I can and cannot eat or do, and how to best manage my symptoms.
It’s just… I watched them enjoying life and food, without consequence and without judgment, and I suppose I envied that a bit – that and their happiness.
It cuts deep to have the severity of Long Covid be so dismissed, when I’m the one living with it. As if I caused it, or I’m not doing ALL THE THINGS to get well.
I sit in the sunshine almost daily, eat sugar free and gluten free and very low carb, “carb up” with healthy carbs, research & test things, take supplements, reach out to friends, do things that give me a sense of purpose & satisfaction, etc.
And I’m doing all of these things even though it is HARD – it’s hard to shop, eat, talk, keep up with ordering & taking supplements, get myself down to the lower deck or even just up and down to sit on the top step in the sun. But I keep going, I keep finding solutions, and I’m SO proud of myself for how well I’m managing and handling everything!! So yeah, it hits me right in the gut when people assume “I’m making myself sick” or that I’m not doing EVERYTHING in my power to get well.
Here are two of my most recent keto friendly low carb meals, by the way: salmon & broccoli and grilled chicken with green beans. Healthy dinner choices by pretty much any standard, right?
I was lean, healthy and fit when I got sick in November 2020, almost 18 months ago. I spent YEARS getting in the best shape of my life. Even now, my labs are still great, and my doctor is happy with how well I’ve maintained and managed good numbers through all of this.
And then… all the way around me at the pub people are indulging, drinking, eating, whatever, while I make a good “indulgent to me” choice – yet I’m the one who’s struggling so hard with a myriad of bizarre symptoms and debilitating health issues.
* note: They were out of ribeye, which is what I wanted (Selenium, Zinc, B6, B12, etc) and I didn’t want to risk eating anything green while out in public (like a side salad, or that leaf of lettuce under my burger). Usually I just get a double burger with no side, but the sweet potato fries were a nice treat (beta carotene, vitamin C, potassium, etc) and … something that made me feel “normal” and happy.
Truly, it’s silly that I even feel like I have to defend or explain my food choices. If anything a night out of stuffing my face full of empty carbs and a whole pie would be considered just fine after what I’ve been through. But I know how much worse I feel out of ketosis, because yes: I’ve tested that. It causes all of my symptoms to flare up WAY worse 😨 and it’s really hard to recover from.
Having longcovid is not my fault, and has nothing to do with what I do or don’t eat. I just have it, period. What I do or don’t eat at this point is simply about managing symptoms for the best quality of life. And yes, I have and am still cycling through various elimination diets, figuring out what helps and what makes things worse, etc.
I am not alone. 👇 38 million ➕️ is nothing to sneeze at…
Still, as I sat there enjoying my burger, and the first beer I’ve had in ages, and only one, I couldn’t help but notice how everyone else ate whatever they wanted, as much as they wanted, and that they were all well and fine … (and that I was not).
It felt unfair, considering how diligent & consistent I am about my health and nutrition. Unfair because of the notes & comments I keep getting, I mean. I think it’s GREAT that other people can live life so fully, without a care in the world, and it was beautiful to watch that.
I accept that my feelings are a little irrational or misplaced. I acknowledge that these triggers are mine to own, and to sort through and fix. I remind myself that my thoughts and emotions aren’t as easily manageable with the neurological issues and cognitive dysfunction I’m struggling with.
It just really hurts to feel unseen, unheard, and so misunderstood. 😢
There are other things going on as well for awhile now that are affecting my mood and feelings, contributing to my state of mind – feeling down and such. Mostly with family & friends. I take responsibility for that too. My feelings are my own to fix.
Usually I step out on the deck and play WordScapes, as that’s one of the suggested therapies to help with longcovid neurological issues (mind stimulating games or exercises). It’s a great way to take my mind off things for awhile too.
Of course, that comes with it’s own set of triggers. 🤨 lol…
In addition to notes about how and what I eat (without even knowing how and what I eat, or if I’m even eating at all), four times (4!!) over the last year, I’ve been sent articles about long covid suicide. Those always make me cry in such deep sadness for the person that gave up – because I know her pain, the depth of her hopelessness, just how much she felt unseen and left behind.
I’m not sure why people send me those. The last one, a week ago, I showed to my daughter when she was here. I said, “do you suppose this is meant to be suggestive?” She replied, “Why would someone send you that?!” – I don’t know, I whispered quietly, and shrugged, holding back tears.
This is hard.
I take a deep breath in, close my eyes, exhale slowly… and close the notes that hurt, and rest. I know people (usually) have very good intentions, and are reaching out in kindness and with hope or hopefully answers.
The thing is, I have hardly ANY other social interaction outside of these comments and emails and messages. So it gets a little overwhelming, and adds to my feelings of isolation and exclusion.
It’s getting hard to even get online, or interact or engage socially anymore.
I’m not exaggerating when I tell you it is almost EVERY day and coming at me from every direction. Last week I shared a recipe for very simple keto wraps. This comment, was totally unrelated to that recipe post & video, so it’s not like I’m asking for advice – or even bringing up the topic:
Here is my reply to that note:
Thank you. ❤️ That article needs a lot of fact checking, just fyi. Regardless, I’m not buying it. I’ve heard “diet blame” countless times since I got longcovid. The millions of other people with it are on no particular diet at all, with a small percentage eating low carb or vegetarian – or doing elimination diets to manage symptoms (a very small percentage). There’s no way eating grilled salmon and broccoli, blueberries and macadamia butter, grilled chicken & spinach, etc has made me sick or is making me sicker – period. I could eat pop tarts and Dr Pepper for every meal and not cause this slew of symptoms or severe illness. I just have longcovid. For 35 years before I started eating low carb, I ate pizza and drank coke and binged on fried foods and sweets, could eat an entire pan of brownies, ate a lot of crap fast food, etc etc etc – and never had any major health problems. So I can’t see any logic in blaming salmon and avocado, or any other great variety of healthy whole foods I eat. My labs are great btw, and my tests come out clear.
Blah. I don’t even know the point of sharing all of this with you, except… I’m getting more and more withdrawn, and I’m trying to break out of that. People say, “I miss your posts!” and then when I do have a good day and share something… this is the kind of response I get. 🤦♀️
It was just garlic steak and roasted sweet potatoes (30 net carbs). 🤷♀️
That plate was the first time I’d eaten in days. I’m struggling with eating at all lately, but I finally had an appetite and that was delicious!
I know better than to take rude social media comments personally, but like I said earlier – it’s the ONLY social interaction I even have anymore.
I have been making efforts in that department, of course. I’m taking personal responsibility, and taking action. When someone says “let’s catch up, how about Tuesday?” I am up and ready and waiting all day that Tuesday.
This note ^ was 104 days ago. The text and call never happened. If plans are left open ended, I’ll follow up or touch base. I know people have busy lives and “things happen” – but this particular relationship is one I don’t feel very secure about (my sister). So I let that one go.
Last month, in April, two different “friends” offered to come spend the day with me – then never called, canceled or showed up. Or when they did finally call, in both cases, just casually chatted about their full week and how busy they were. I felt forgotten, and it felt awkward to bring it up.
That was really frustrating because I can’t just “shower & go” like I used to. It’s a process I have to pace out, and even more so if I’m going to have company here. Something as simple as a shower is so crippling that I have to do that in advance then recover. I’m sure it’s hard to imagine unless you could be here and SEE what I’m going through. But nobody is or has.
For the most part, I’m fine with being alone. It’s a little unsettling at times, but honestly – I don’t get lonely when I’m alone, and I’m taking care of myself very well. I really only get lonesome when I feel forgotten or avoided, or when I’m looking forward to something and it falls through.
It’s been almost a year since my daughter wanted to do an outing with me, and she’s made herself pretty scarce here at home too. My son, who lives out of state and hasn’t even seen me in this condition (he refused my recent video call attempt), and has hardly spoken to me in months, used this word on me last week when we finally talked… I had to look it up:
Why would anyone want to ACT or be as sick as I am?! I am getting absolutely nothing out of it – except tens of thousands in medical bills, lost work & income, NO social life, no calls or visits, no financial assistance, no help, nothing. That one just BLEW MY MIND. * He was upset that I was responding slowly or struggling with train of thought – I think.
I get why my kids are avoiding me and being weird about it. I’m all they have, and all they’ve ever had. We have no other family. I’m their one and only constant. This happened once before I think 13 years ago when I had a surgery go bad and ended up on extended bed rest (they split).
Denial is better than facing the possibility of losing me, and I’m sure also they’re just used to me being there for them, and don’t know how to handle any of this. I get that. I’m trying to work with them on it, but that gets emotional – and getting even the least bit emotional lands me back in bed with horrific flare-ups for days. So it’s all just… hard.
My son hung up on me and blocked me (geez). My daughter goes back and forth between trying to be there (and she’s great when she is) and being as scarce as possible. She says it’s hard to see me like this. I get that.
It’s not just my kids though. My friends don’t call, no one stops by or checks in, no one has come for a social visit (and yes: I have tried to reach out, make plans, etc). I’m kinda used to that by now. It’s hard some days for sure, but I do okay on my own. I’m doing great actually…
I’ve kept a good mindset, make my health and well-being a top priority, have had a good sense of humor through it all too. I’ve just hit a wall over the last few weeks, the last month or so, after several incidents & conversations in a row that were just incredibly hurtful & dismissive.
So, right now, I’m trying to pick myself up, dust myself off, and try again, or try some new things, some different things, focus on what I can control and let go of what I can’t, etc. One day at a time.
When I said, “last night I went out for Bingo” I meant Monday night. I think it’s Saturday already now. Things take me awhile these days. 🙂 I also keep second guessing whether I should publish this note, or whether it even makes any sense.
I’m still not sure on that. I tried to get myself together to do a live video chat the other day, but that didn’t pan out (I ended up back in bed). I think you would have to see me to truly understand what’s going on, and even that wouldn’t be the same – because I can do pretty okay sitting still for a bit most days. It’s the days I can’t “show up” that define most of my life right now.
I’m doing well, all things considered. I’m hanging in there. 😉 And most days I’m happy and well, content and fine, keeping busy with projects that give me purpose and satisfaction.
Things have just been a little hard lately, and I’m making some difficult choices and changes. There will always be rude comments on the internet, and well-meaning friends (and strangers) with good intentions and big assumptions. I’ve always handled all of that pretty well I think.
I’m just a little extra sensitive lately. Probably because I desperately need a friend, over a fix. I could really use a good laugh, instead of a lecture. I would love someone to talk to, not just to be talked AT about what I should do or what else I should try. I suppose really, I’m just exhausted.
Not to end this on a negative note, yes – I’ve been proactively looking for solutions. I think I’ve found a car service, and that will be really helpful. I’m aching to get out and see the outdoors, but I haven’t been able to drive much since August. I’ve found some other options and resources to explore too, so… I’m on it. 😉 As for friendships and social stuff, I’m taking a break on that for awhile. It’s just too hard, and I need to figure out how to make that work – and get back in a better headspace about it.
And here’s a cute picture of my sidekick, Luna Rose. I call her “short stuff” because she’s quite small for a great dane. 🙂 She is patient, she is affectionate, and she doesn’t mind at all if I don’t have the energy to shower – or to wash the bedding after she came in muddy from playing outdoors. She’ll curl up with me just the same. ❤️
I want to get back to publishing my food diaries, but I get discouraged when I share something real quick and get comments like “yuck” or “that sounds gross” – or no response at all.
It’s hard too since I’m not eating much right now, cycling through supplements and elimination diets, and testing different things to manage all my symptoms.
I want to get back to working more too, but every time I have a good hour and sit down to catch up on messages and emails, there’s always that ONE that totally deflates me – and I just go back to bed. That’s not about depression, although I’m feeling a little down lately for sure. It’s about limited mental energy and crushing fatigue. I just don’t have the brain bandwidth to watch a one hour video, or to even come up with the words to respond most days. If it’s work related, that’s easy! (and a really nice distraction). So I’m behind, really REALLY behind, on everything.
I miss writing though, and I especially miss sharing stories and motivation & inspiration. It’s just rare I can function or concentrate long enough to figure out what to say, and make it make sense. Like this note for example, which I’m sure says way too much – but also leaves SO much out.
If you hang in there with me, I’ll get back there. I feel sure I will. I’m not okay lately but I’m going to be just fine. This has just been a TOUGH phase. I’m still hopeful, still hanging in there, with patience and grace, and very much looking forward to better days ahead – writing good things, sharing good shares, with an attitude adjustment (lol, I’m working on it!), and hopefully some hours outdoors with a gorgeous view or my feet in the river. 🥰
I think I got so far away from the bingo night topic, that I don’t even know what happened. It was nice to finally get to go out. It was hard for so many other reasons.
I hope your good is better than your bad, and that if it’s not right now, that you’re hanging in there (too) and working on turning things around. 💕 xo
Hopefully I’ll have something enlightening to share when I get on the other side of this funk.:) Ha! *cheers*
For now, I’m off to have some chicken salad and find a good movie…
Through all of this, the people in our low carb community have been the kindest and most supportive. That plus my business coaching group. I am incredibly grateful to have those two places to “connect” when I can – and appreciate the kindness & understanding so very much.
I think it would do me a lot of good to “quit trying at what’s not working” and show up LESS in the places that are making things harder, and show up more in the places and the ways that light me up. I think it would be nice to do more live video so I have some fun positive interaction at least once a week, so I’ll keep you posted on that – as soon as I’m feeling up for it. Maybe just something fun & simple… I’ll work on ideas for that. 🙂
p.s. Next, see Part Two: One Week Keto Food Diary (And What I Would Change) What I ate this week – and what I would change (and why). Or: the advice I would give if I was analyzing this food diary for someone else…
Plus: Video Update ✨️ Candid Chat with Lynn – You’ll get to see me on a “good day” 🙂 and get a better feel for what I’m going through and how I’m doing. xo
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