6 months of #LongCovid today. I’m going to best try to outline my entire experience for those who have found my profile mid-journey. This will probably be a ridiculously long thread, but if there’s one good thing to come of this experience, I hope I help at least one person. 1/

So let’s start at the beginning, though it’s hard to know where that is. We don’t know where exactly I picked this up. The truth is I’ve been counting my first day as March 11th which started this consecutive journey. But it could have been before that, so I’ll back up further 2/

So February 7th my husband and I flew to Seattle for a business trip. We were there for 48 hours. We were extremely careful considering it was a hot spot but at the airport terminal, a man desperately out of breath (around my age) plopped down next to me, wheezing 3/

This is the only person I came in contact with who expressed any symptoms of illness at all. I was next to him for a few minutes before getting up. At this same time my 8 and 3 yo were staying with my mom. The day we left, my mom text me to say 3yo had a cough. My dad and mom 4/

Both ended up sick that weekend but my dad was sick for 1 day, my mom 2 days. We didn’t think anything of it, and they were better when we got home. The 3yo had dry cough for weeks, as did his entire class. None of the kids had tested positive for flu A, B, strep or croup 5/

This continued in his class for the next 5 weeks until schools shut down. In the two weeks before school half his class was out. In the meantime, a few days after being back from Seattle, my husband and I both had a weird sore throat and headache, as well as fatigue for 5 days.6/

It went away and then we were fine. I tracked the news carefully and we decided as a family that only I would go grocery shopping and limited our activity outside the house to work, school, and the gym during February. The week before our shut down, we stopped the gym too. 7/

All washing hands, no touching our faces, taking the precautions directed at the time. That’s all “precovid” but there’s any number of possibilities we will never know to make of that. So March 11th, I notice 3 things: loss of appetite, diarrhea, and breathlessness when eating 8/

This goes on until the night of March 14th when chills, fatigue, 100.2 fever, sore throat start. My body was so tired it felt like laying in bed took effort. Didn’t sleep well. The next morning we text my Dr who put in a prescription for 10 day prednisone, since chest felt wet 9/

Hubs picked it up, I started that day. Chest felt wet and like I had a belt around it pressure wise, 100.2 fever. I also started spotting (I take the depo shot and normally don’t get a period). First day of covid headache (all over constant pressure) and hallucinations 10/

Theses Sxs stayed consistent the first week, with a heartburn like feeling in my chest and abdomen. The headache and chest pressure was constant. I was drinking tons of water but felt dehydrated. My throat felt dry at the bottom no matter what. Sleep was light &hallucinations 11/

That continues until prednisone is over on Day 12. My chest pressure finally eases slightly. It starts a cycle of new, different symptoms: extreme fatigue, extreme nausea, internal shakiness. It feels like internally your body is an earthquake but no physical shaking is seen 12/

This continues for the next week. Day 14 is my birthday and I start the day vomiting. Nausea and shaking get worse. That night I start jolting awake at 2am with horrible malaise, high HR (going from 60s to 150s laying down). Day 16 begins where I dry heave if I talk too much 13/

Swollen lymph nodes, and the ones in my thighs burn. Stomach/neck pain on top of continued malaise, shakiness, HR issues, hallucinations. Day 17 is my worst day ever. Constant shakiness all night w/HR issues. Genuinely feel as if I’ll die in my sleep. Have emotional breakdown 14/

Call Dr. He clinically diagnosed covid since no tests are avail. Says body is having stress response/should feel better in a few days. The next day is up and down, less tired but more chest pain. Felt slightly better. At this point, my symptoms go up and down but all present 15/

This is true for the next week. I’ll have a few hours of feeling better, then really crappy with chest pain, gagging, stomach pain. Start getting pain in other areas. Temp finally goes down to 99X but goes back to 100.2. Diarrhea constant for first month, as was fever, thirst 16/

chest pain/pressure, sleep issues, and loss of appetite, emotional. Covid makes you not want to eat or drink but you have to. It makes you scared to sleep but you have to. Slept in a recliner and away from my hubs and boys for the first month. It was sad and lonely and scary 17/

After month 1 I finally get a pulse oximeter, and I reach out on twitter and find I’m not alone. This helps my mental status tremendously. But also as I’m not getting better like the news/doctors say I should, I’m also watching ppl deny the virus altogether. Total mindf*ck. 18/

Month 2 I finally have my temp back down. O2 is always normal even during worst chest pain/SOB. HR issues continue, especially at night. Soreness in upper back/chest. Pains in legs, lower back, abdomen. Develop heart pain. Start sleeping slightly better, some hours of ok 19/

End of month 2 I develop petechiae my body. Dr has me come in for blood work to check my platelets and do a chest X-ray. Both come back normal. Dr says it’s normal after a virus. 20/

Month 3 is a lot like month 2 but my stretches of normal get a little longer at a time. I cannot regulate my body temperature and my feet get red/have a rash when it’s warm. Takes a long time to cool down. I also have an episode where my face and tongue go completely numb 21/

My limbs keep falling asleep quite easily and I have sore muscles, especially thighs and calves with these electric type pains at times. Also this is where my brain fog/memory issues become distinct. I had them before but it’s easy to dismiss when you feel awful. 22/

But when you have bits of normal but still feel in a fog, it’s concerning. I forget what I’m saying/doing in the middle of doing it. And the thought is gone completely. Say the wrong word even if I’m thinking of the right ones. Also have found parts of my old memories missing 23/

I reach out to Dr, he says anxiety. This is when I stop reaching out to him for awhile bc I know it’s beyond that. I start taking small walks .5 miles slowly, and then building up. They wipe me out. I attempt beginner yoga for 20 mins and feel destroyed for 3 days afterwards 24/

Month 4 stretches of good become longer w/relapses becoming shorter. Still have chest pain/SOB/brain fog/HR issues. At night when I wake up and go from laying to standing I get dizzy and Hr shoots up to 130s. Occasionally shaky. Start reading in small doses, very tired after 25/

I have an episode for a few days where it feels like there’s a rod through my nipple with pain under my ribs. Felt very cold, weak, and nauseous. Feel crappy for a few days but then I go back to my usual cycle. Am able to do a little more walking but still have HR issues 26/

I also have reactions to foods I normally don’t have problems with. I have food sensitivities to gluten, wheat, eggs and dairy. No actual allergies. But my throat swells one night eating shrimp. Then I have a reaction to trail mix two weeks later. Dr does a test for allergies 27/

Normal. I ask if I can get retested for food sensitivities. Their lab cannot so I have to reach out to the lab that did it for me two years ago. I get this done in Month 5. I still have the same sensitivities but now nuts, corn, and peas are reacting. Also CBC done, normal 28/

Month 5 has a lot more normal days. I reach out to my doctor to lay out what is lingering daily and weekly. Send him articles from WHO, CBC etc outlining why I’m concerned about my brain and heart. Don’t hear back for a week. Go in for my full physical we do yearly. 29/

Here is the thread outlining all my results from my physical here 30/ https://twitter.com/ellemarie_318/status/1298820587607879683

I’ve also gone to the cardiologist. I got an EKG which was fine and blood work to check my thyroid and heart. Also normal. At the end of this month i go for an echo, holter monitor, and stress echo. Both cardiologist and PCP recommend increasing my exercise very slowly 31/

That brings us up to date. What’s lingering now: at night if I go from laying down to standing still dizzy and my heart rate shoots up. If I feel crappy this happens during the day also but mostly happens at night. HR also elevated when eating. Still have memory issues 32/

On nights my HR is bad, I have chest pain/SOB for a few hours afterwards. I’m up to being able to walk 4.5 miles without having to rest after but only once a week. I’ve lifted with very light weights (3,4,5lbs). My muscles hurt during like when blood rushes into sleeping limb 33/

But it’s not making me fatigued. I do mile and a half walks most mornings, started doing hills to increase cardio. We walk as a family at night 1 mile. I do easy yoga every night before bed. I’m almost back to how I was except exercise and my HR issues and memory. To compare 34/

I was 31 when I first got Covid in the best shape of my life. Extremely active. I ran half marathons, worked out intensely 6x/week with weightlifting and all sorts of cardio and yoga. I eat clean always, no drugs, no alcohol. I also have 2 sons, 8 and 3, and kept up w/them 35/

It is getting better, I’m just concerned about these HR issues. As a runner I was able to run at a 6.5 mph pace steadily and gave my HR be in 130s. Now standing up to go to the bathroom can cause that and it takes 30-45 mins for it to recover to normal. 36/

Lastly I’ll cover this: what worked for me. I’m not a doctor, but personally this is what I’ve done. Who knows if it’s helped or hurt, but I’m putting it out there for you to discuss with your drs if you want to 37/

In the beginning I ate and drank as much as I could even though my body tried really hard not to. I’ve eaten completely clean the entire time. I try eating the same types of things around the same times (fruit smoothie for bfast w zinc/magnesium supplement), salad for lunch 38/

With lots of different varied veggies, lean protein with veggies for dinner. Healthy snacks. Lots of electrolytes with pedialyte, Gatorade, and electrolyte powder. This especially made a difference with my heart pain/palpitations severity. 39/

I was lucky to be able to quarantine completely away from my family so they wouldn’t get it. When I came back out after a month I wore a mask/tried not to touch them unless I was fresh out of the shower with fresh clothes. It hurt for all of us, but felt necessary at the time 40/

I take nightly supplements of vitamin D, multivitamin, omega 3 fish oil, and probiotics. Drink electrolytes before bed. Sleeping on my stomach was the biggest game changer. I wish I had done it sooner. I still sleep on my stomach mostly. I didn’t take any medicine aside from 41/

Prednisone. I’m really sensitive to them & I didn’t want to confuse side effects with symptoms unless it was something serious. Find support, even if it’s strangers on twitter. This has been the scariest darkest experience of my life, but having ppl who understand is amazing 42/

Take social media breaks as necessary. Your mental health is just as important and affects your physical health. My dark mental days I also felt physically crappy. Each can make the other worse. Remember your body is dealing with a life-threatening virus, be kind to yourself 43/

Advocate for yourself. You know your body best, push for the help you need. Hopefully this gets easier since long covid is now being studied. If you’re open to talking about your experiences, do it— you could help someone else. Listen to your body. Don’t push past its limits 44/

Have faith that in time your body will get your as healed as it can. I’m not all the way, but I’m 90ish%. I’ve come to terms with if that’s as good as it gets I’ll make it work and can be happy. I am hopeful right now I can get further possibly. Either way I’ll be alright. 45/

Feel all your emotions as they come. There will be a lot of them. This is a roller coaster physically, mentally, and emotionally. Be kind to yourself about that too. It’s part of being human. And of course, wear a mask, wash your hands, social distance. Be part of the helping 46/

And as always, I am here to chat if you want to. If you have questions, fears, need someone just to talk to, I am here to listen. I have come so far in the last 6mos and I’m grateful for it. All of us have had different experiences, this has been mine. 47/

The silver lining is the support I’ve found here. I’ve met some extraordinary people. We are helping each other through illness and changes and advocacy. I will always be grateful for all of you and what we’ve done together (so far ). Wishing everyone wellness and good days /x

PS1/ would i even have covid if I didn’t forget something? two things: hair loss. I’m losing my hair like crazy the last two months. Not in big chunks but the strands add up to palm sized clumps. Second thing I touched briefly on was spotting. I’ve spotted every month 30 days

PS2/ old cycle before Depo shot was 37 days, 4 days of bleeding. Now it’s 30 days/6 days of spotting until this month. I got an actual period. It lasted 10 days. I got a 4 day break and spotted again but it a few days before my shot was due. This lasted 4 days (2days post shot)

Dr said hormones and the difference in my activity leveled these months compared to precovid. He says as I build up by exercise if it continues to call him and we will go from there. /end