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Last night I went out for bingo, beer and a burger. šŗ Itās the first time Iāve been out in months, except a few dr appts here and there, and the most normal thing Iāve done in forever. It was nice. š
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. š
Everything about it was hard for me. Just getting showered and getting dressed is a serious challenge. Iām 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). š
Sometimes just the thought of going out is too exhaustingā¦ 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 š³ 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 ā but I made it through the 2 hours and I donāt think anyone really noticed (or cared).
It wasnāt 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 donāt 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 āsafe enoughā to go to bed.
Living with Long Covid is really hard ā and incredibly isolating. I canāt 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 š„° 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 ā 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 & drinksā¦ I felt a ping of hurt ā and over the silliest thing.
It wasnāt because of how lonesome I am, or how long it took me to get taken out somewhere and how hard and hurtful thatās been. It wasnāt because Iām so unwell and life is so much harder now, and that I miss being carefree and healthy and happy ā 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 carbsā¦ 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 ā 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 strugglesā¦ because āI eat keto.ā š¤Ø
There has always been food/diet stigma, and definitely āketo stigmaā ā and of course now: the stigma around getting covid or having longcovid is just as bad, if not worse.
Iām sure Iām not the first person that eats very low carb thatās heard something exactly like this, an excerpt from a letter I got this week:
Itās 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 havenāt even been sharing many meals or food diaries for awhile now ā for another reason entirely, which Iāll tell in a minute.
Itās also worth noting that Iāve had a heart ultrasound, worn two heart monitors, had a heart stress test, and that my heart is great & fine ā 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 donāt know the science behind eating very low carb or how it works, even though itās been around for many decades.
But we have had ZERO communication about my meals, my medical test results, etc ā and I didnāt 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. š
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 Iām getting BOMBARDED with this messaging from āfriendsā (and strangers) incessantly ā literally NONSTOP. ughā¦
Unless you have a severe case of Long Covid like what Iām dealing with, Iām sure itās hard to understand. But Iām 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. š
Itās 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. Iāve always been one to āmind my own plateā ā and I know through 17+ months of trial & error what I can and cannot eat or do, and how to best manage my symptoms.
Itās justā¦ I watched them enjoying life and food, without consequence and without judgment, and I suppose I envied that a bit ā that and their happiness.
It cuts deep to have the severity of Long Covid be so dismissed, when Iām the one living with it. As if I caused it, or Iām 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, ācarb upā with healthy carbs, research & test things, take supplements, reach out to friends, do things that give me a sense of purpose & satisfaction, etc.
And Iām doing all of these things even though it is HARD ā itās 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 Iām SO proud of myself for how well Iām managing and handling everything!! So yeah, it hits me right in the gut when people assume āIām making myself sickā or that Iām 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 Iāve maintained and managed good numbers through all of this.
And thenā¦ all the way around me at the pub people are indulging, drinking, eating, whatever, while I make a good āindulgent to meā choice ā yet Iām the one whoās 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 didnāt 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 ā¦ something that made me feel ānormalā and happy.
Truly, itās 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 Iāve been through. But I know how much worse I feel out of ketosis, because yes: Iāve tested that. It causes all of my symptoms to flare up WAY worse šØ and itās really hard to recover from.
Having longcovid is not my fault, and has nothing to do with what I do or donāt eat. I just have it, period. What I do or donāt 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. š 38 million āļø is nothing to sneeze atā¦
Still, as I sat there enjoying my burger, and the first beer Iāve had in ages, and only one, I couldnāt help but notice how everyone else ate whatever they wanted, as much as they wanted, and that they were all well and fine ā¦ (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 itās 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 arenāt as easily manageable with the neurological issues and cognitive dysfunction Iām struggling with.
It just really hurts to feel unseen, unheard, and so misunderstood. š¢
There are other things going on as well for awhile now that are affecting my mood and feelings, contributing to my state of mind ā 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 thatās one of the suggested therapies to help with longcovid neurological issues (mind stimulating games or exercises). Itās a great way to take my mind off things for awhile too.
Of course, that comes with itās own set of triggers. š¤Ø lolā¦
In addition to notes about how and what I eat (without even knowing how and what I eat, or if Iām even eating at all), four times (4!!) over the last year, Iāve been sent articles about long covid suicide. Those always make me cry in such deep sadness for the person that gave up ā because I know her pain, the depth of her hopelessness, just how much she felt unseen and left behind.
Iām not sure why people send me those. The last one, a week ago, I showed to my daughter when she was here. I said, ādo you suppose this is meant to be suggestive?ā She replied, āWhy would someone send you that?!ā ā I donāt know, I whispered quietly, and shrugged, holding back tears.
This is hard.
I take a deep breath in, close my eyes, exhale slowlyā¦ 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.
Itās getting hard to even get online, or interact or engage socially anymore.
Iām 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 itās not like Iām asking for advice ā or even bringing up the topic:
Here is my reply to that note:
Thank you. ā¤ļø That article needs a lot of fact checking, just fyi. Regardless, Iām not buying it. Iāve heard ādiet blameā 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 ā or doing elimination diets to manage symptoms (a very small percentage). Thereās no way eating grilled salmon and broccoli, blueberries and macadamia butter, grilled chicken & spinach, etc has made me sick or is making me sicker ā 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 ā and never had any major health problems. So I canāt 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.
ā
Blah. I donāt even know the point of sharing all of this with you, exceptā¦ Iām getting more and more withdrawn, and Iām trying to break out of that. People say, āI miss your posts!ā and then when I do have a good day and share somethingā¦ this is the kind of response I get. š¤¦āāļø
It was just garlic steak and roasted sweet potatoes (30 net carbs). š¤·āāļø
That plate was the first time Iād eaten in days. Iām 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 ā itās the ONLY social interaction I even have anymore.
I have been making efforts in that department, of course. Iām taking personal responsibility, and taking action. When someone says āletās catch up, how about Tuesday?ā 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, Iāll follow up or touch base. I know people have busy lives and āthings happenā ā but this particular relationship is one I donāt feel very secure about (my sister). So I let that one go.
Last month, in April, two different āfriendsā offered to come spend the day with me ā 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 canāt just āshower & goā like I used to. Itās a process I have to pace out, and even more so if Iām going to have company here. Something as simple as a shower is so crippling that I have to do that in advance then recover. Iām sure itās hard to imagine unless you could be here and SEE what Iām going through. But nobody is or has.
For the most part, Iām fine with being alone. Itās a little unsettling at times, but honestly ā I donāt get lonely when Iām alone, and Iām taking care of myself very well. I really only get lonesome when I feel forgotten or avoided, or when Iām looking forward to something and it falls through.
Itās been almost a year since my daughter wanted to do an outing with me, and sheās made herself pretty scarce here at home too. My son, who lives out of state and hasnāt 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 talkedā¦ 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 ā 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 ā I think.
I get why my kids are avoiding me and being weird about it. Iām all they have, and all theyāve ever had. We have no other family. Iām 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 Iām sure also theyāre just used to me being there for them, and donāt know how to handle any of this. I get that. Iām trying to work with them on it, but that gets emotional ā and getting even the least bit emotional lands me back in bed with horrific flare-ups for days. So itās all justā¦ hard.
My son hung up on me and blocked me (geez). My daughter goes back and forth between trying to be there (and sheās great when she is) and being as scarce as possible. She says itās hard to see me like this. I get that.
Itās not just my kids though. My friends donāt 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). Iām kinda used to that by now. Itās hard some days for sure, but I do okay on my own. Iām doing great actuallyā¦
Iāve kept a good mindset, make my health and well-being a top priority, have had a good sense of humor through it all too. Iāve 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, Iām 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 canāt, etc. One day at a time.
When I said, ālast night I went out for Bingoā I meant Monday night. I think itās Saturday already now. Things take me awhile these days. š I also keep second guessing whether I should publish this note, or whether it even makes any sense.
Iām still not sure on that. I tried to get myself together to do a live video chat the other day, but that didnāt pan out (I ended up back in bed). I think you would have to see me to truly understand whatās going on, and even that wouldnāt be the same ā because I can do pretty okay sitting still for a bit most days. Itās the days I canāt āshow upā that define most of my life right now.
Iām doing well, all things considered. Iām hanging in there. š And most days Iām 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 Iām 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. Iāve always handled all of that pretty well I think.
Iām 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, Iām just exhausted.
Not to end this on a negative note, yes ā Iāve been proactively looking for solutions. I think Iāve found a car service, and that will be really helpful. Iām aching to get out and see the outdoors, but I havenāt been able to drive much since August. Iāve found some other options and resources to explore too, soā¦ Iām on it. š As for friendships and social stuff, Iām taking a break on that for awhile. Itās just too hard, and I need to figure out how to make that work ā and get back in a better headspace about it.
And hereās a cute picture of my sidekick, Luna Rose. I call her āshort stuffā because sheās quite small for a great dane. š She is patient, she is affectionate, and she doesnāt mind at all if I donāt have the energy to shower ā or to wash the bedding after she came in muddy from playing outdoors. Sheāll curl up with me just the same. ā¤ļø
I want to get back to publishing my food diaries, but I get discouraged when I share something real quick and get comments like āyuckā or āthat sounds grossā ā or no response at all.
Itās hard too since Iām 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, thereās always that ONE that totally deflates me ā and I just go back to bed. Thatās not about depression, although Iām feeling a little down lately for sure. Itās about limited mental energy and crushing fatigue. I just donāt have the brain bandwidth to watch a one hour video, or to even come up with the words to respond most days. If itās work related, thatās easy! (and a really nice distraction). So Iām behind, really REALLY behind, on everything.
I miss writing though, and I especially miss sharing stories and motivation & inspiration. Itās 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 Iām sure says way too much ā but also leaves SO much out.
If you hang in there with me, Iāll get back there. I feel sure I will. Iām not okay lately but Iām going to be just fine. This has just been a TOUGH phase. Iām still hopeful, still hanging in there, with patience and grace, and very much looking forward to better days ahead ā writing good things, sharing good shares, with an attitude adjustment (lol, Iām working on it!), and hopefully some hours outdoors with a gorgeous view or my feet in the river. š„°
I think I got so far away from the bingo night topic, that I donāt 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 itās not right now, that youāre hanging in there (too) and working on turning things around. š xo
Hopefully Iāll have something enlightening to share when I get on the other side of this funk.:) Ha! *cheers*
For now, Iām off to have some chicken salad and find a good movieā¦
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 āconnectā when I can ā and appreciate the kindness & understanding so very much.
I think it would do me a lot of good to āquit trying at whatās not workingā 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 Iāll keep you posted on that ā as soon as Iām feeling up for it. Maybe just something fun & simpleā¦ Iāll work on ideas for that. š
Best,
Lynn Terry
aka @LowCarbTraveler
p.s. Next, see Part Two: One Week Keto Food Diary (And What I Would Change) What I ate this week ā and what I would change (and why). Or: the advice I would give if I was analyzing this food diary for someone elseā¦
Plus: Video Update āØļø Candid Chat with Lynn ā Youāll get to see me on a āgood dayā š and get a better feel for what Iām going through and how Iām doing. xo
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