My long Covid journey so far

Hi everyone,
This was an incredibly tough video to do. However, I hope this can help someone navigate this illness, even if it's just one person.
I’ve been living with Long Covid for almost three years now. With it being Long Covid Awareness Day, I wanted to share my story to those who may not be aware of the millions of people living with this debilitating condition, on a daily basis.
Thank you for watching. 🫶🏾
RESOURCES
Information on International Long Covid Awareness Day
www.longcovida...
Long covid support UK
www.longcovid....
The ME Association
meassociation....
Action for ME
www.actionform...
About MCAS ukmasto.org/ab...
www.mastcellac...
UNREST film by Jennifer Brea
• UNREST Feature Documen...
The KZbin GOAT and OG when it comes to anything to do with Long Covid
/ @rundmc1
Histamine intolerance
www.allergyuk....
Bounded Energy - A Long Covid Podcast (highly recommend giving this podcast a listen. It's about two twenty/thirty-something friends, Katya and Hannah, who were both diagnosed with Long Covid)
open.spotify.c...
#longcovidawarenessday #longcovid #longcovidrecovery
*Disclaimer
I’m not a medical professional, I’m just sharing my own experience. Please seek advice from your GP should you need further help with a diagnosis.

[@sarahferreira8565]

Thank you for sharing. It's so important people understand that not all illnesses are something we can see on someone from the outside but it doesn't mean they aren't suffering. Your honestly and bravery in sharing your experience is so appreciated. Hoping for your continued healing ❤

[@sarahg2721]

I want to give you the biggest hug. I know how frightening it is to not know if/when you’ll get better, and I know how isolating it is. I got ill in 2021 too and I just turned 30 this week. It’s just horrible. Lost my job, lost friends, lost my independence. Lost myself, really. Found joy and escape in books and the online book community too. I see so much of myself in you. We even have the same desk, lol. Sending you love ❤

[@NickellesNook]

I really feel for you, I really do. It’s so unfair and we don’t deserve this at all. Sending you so much love ❤️ P.S also big up IKEA, I love that desk

[@jenniferw1595]

Thank you for bringing awareness to this horrible condition! I have Long Covid too and feel like people are scared to talk about it?? I don’t know why. COVID is still around and still in the air. An ex-coworker of mine got Covid three months ago and now has Long Covid. POTS, cardiac damage, blood clots, and gastroparesis. Our Government wants us to ignore young people get sicking every day! TELL YOUR TRUTH.

[@user-ev3ft8wc4n]

SISTER! Long covid is short for vaccine injured. Until you guys stop pretending that it's anything other then the vaxx, you wil receive no help. You cannot resolve a problem without first acknowledging the cause of the problem; and you guys have done a wonderful job of prolonging your own suffering because you rather believe lies (long covid), rather then face the truth (vaccine injured).

[@SubomiAdventures]

Thanks for sharing and bringing awareness to long covid. Pray and hope it isn’t permanent. Praying for healing for you and everyone with long covid ❤

[@taralawlor5766]

I never comment on KZbin but Nickelle, I wanted to say that I love you, your voice and what you have to say. I found your channel 6 months ago from when you uploaded your first ever two videos and instantly subscribed! You are fun, sassy, honest and so comforting to watch. Learning more about you, in this video and all your other videos has been a privilege. Your message, your creative ideas and content has been so real and you have become one of my favorite people to watch! I cannot wait to see where your channel goes and see it grow even more over the next coming months. You have grown so much already in such a short space of time and I am so proud of you! Over 20K in 6 months (?!) - you are smashing it! Also, thank you so for sharing your story here and raising awareness about long covid. It is so important that people are aware and don't remain/find themselves ignorant (not intentionally/through fault of their own of course!) about this. Also raising awareness about how much of a battle it is to make medical professionals BELIEVE you and hear you is so important. I can't imagine how vulnerable it must have felt for you to 1) sit down and film this, 2) edit it and 3) then post it here. You should be so proud of yourself! Not only did you look that vulnerability right in the eye and go for it, but you did a beautiful job conveying your history, allowing us to really see into how your last 3 years have been for you & how your current day to day is like now. I have learned so much from this video and will be further educating myself on long covid from this point onwards, because of you. I have been thinking this for a while (before seeing this video) but if you are comfortable with it - you should think about creating a Patreon to allow your community that you have built support you in creating your future content. I am not sure of the logistics behind creating one but definitely think about it! I love your work and I would be one of the first to sign up! :)

[@Theamateurecologist]

So much of your story resonated with me. I also have an autoimmune disease, I’m a mom and a wife and life can get hard sometimes, people doubt what I go through because I’m 29 and young and ‘look’ healthy. As black women we will always have to fight damn hard at advocating for ourselves. Also I loooove the sims!

[@sjthorn]

I had actually never heard of long COVID until you, so thanks for sharing so I can be more understanding in the future.

[@cavarsarah9543]

Thank you so much for sharing this. I became permanently disabled/chronically ill as a teenager (before COVID) and I am grateful for long COVID advocates like yourself for speaking up at such an emotional, scary point in your lives. The disability community is here for you. I hope that there is more understanding, support, and compassion for all of us in the future, especially as more and more people experience disability and the loneliness that comes from it.

[@NickellesNook]

Thank you so much 💕 You have no idea how much that means to me ❤️❤️

[@TanyaWestley]

Thank you for opening up Nickelle, this must have been very hard. I can relate to your experiences as I got Covid in May 2022 after being in Greece for a lovely week of sunshine. I thought I would be ok as I was vaccinated and had a pretty mild bout of it. However, I am still struggling nearly 2 years later. I already had Fibromyalgia but long covid has made it so much worse, I also now have asthma, POTS and IST along with other bits and pieces. The fatigue is absolutely devastating and only now starting to get better. I had to give up my hair & makeup business but thankfully my 'day-job' has been amazingly supportive and understanding. Before this I was unaware that post viral chronic illnesses existed. Thank you again for sharing xx

[@NickellesNook]

Oh gosh, I’m so sorry to hear this. 😔 It’s so surreal that this is our life now right?! I’m glad your job has been supportive during this tumultuous time. Sending love to you 💕 xx

[@ruthnne]

Girl!! I was diagnosed as well with my autoimmune disease in the same june 2021 and I was 27 too and 30 now 😭 I’m so proud of you for speaking out so boldly. Living with invisible isn’t for the weak and that is where our strength lies. You’ve got this! ❤️

[@NickellesNook]

Oh wow, we have the same timeline. Same to you as well, it’s so hard to live like this. Sending you lots of love ❤️

[@rebeccarose4448]

I work in mental health services and sometimes work with people with long covid and I know I don’t know enough about it. Thank you for sharing your story and giving some insight into this - I so badly hope they find more things out about long covid and find things to help. I’ve heard from so many people about the gaslighting that happens from doctors. That needs to stop. Wishing you all the best ❤

[@issymartin6197]

This is so incredibly powerful - and more importantly so are you!!! Your story is so inspiring and we’re so grateful for your bravery in sharing

[@GeorgieGGR]

Thanks for this, you’re so brave for getting through this explanation. ❤ I have LC as well, got it in early 2021 so I know how heavy it is talking about the new limits our bodies have, as well as re-hashing the trauma of it all. While I wouldn’t wish this on anyone, I can’t help feeling comfort that there are so many parallels in our life because of LC. Like I’m 28, can’t work anymore, don’t get taken seriously by doctors, have lost most of my friends and live with my parents because I can’t manage by myself. My dreams and plans have been completely shattered and every time I see improvements I end up pushing that bit too far and relapse, a nasty reality check. Getting back into reading is one of the only positive things to have come from all this, and I’m so thankful to find a creator who can empathise, while bringing some much needed positivity and awareness.❤

[@karlareadstheclassics217]

Poor thing. I hope you're feeling better. Thankfully you have your parents. 💛

[@kristenr563]

I’m sorry you have to experience this. Chronic illness is so difficult and isolating. People do not understand until they experience it, and I worry as Covid continues to ravage people without mitigation, more people will become chronically ill. I have an autoimmune disease as well as POTS. I haven’t caught Covid because I don’t go many places, and if I do, I mask. No one understands. Everyone moved on without me. Your story is important, and I so appreciate you using your voice to show the reality of LC.

[@NickellesNook]

I totally agree. I feel like everyone has moved on and has forgotten about the many lives Covid has unfortunately claimed. The whole world is still in a process of dealing with all this loss and suffering.

[@angelawest6296]

I’m so glad you felt comfortable to share. Your story is so important for women everywhere. I never realized how bad long covid can be and I’m so sorry you’ve had to deal with this. It’s so comforting though knowing you can relate to many women everywhere. It also can be sad because relating also shows how much we’ve been through with doctors, etc. I also have chronic fatigue and brain fog and doctors have failed me. It’s so frustrating how western medicine fails us and the only other option is holistic medicine but it’s so expensive, so we’re left becoming our own doctors. Friendships do change too because they see we “look” young and healthy, but we’re not, so personally, I’ve stopped talking about my struggles and just pretend I’m fine. I only hope one day some miracle will happen and our health becomes better ❤️

[@AthynVixen]

BIG HUGE HUGS Nickelle! Not 3 mins in and I'm crying along with you. So sad to see so many people and so young experience this. I don;t hav much more to add than to echo most of the supportive and kind comments posted here already Sending you lots of love and support with your healing and journey and thanking you once again for having the courage to share your story in the hope it might help others and raise awareness 💗

[@robertah2353]

i'm so sorry to hear about your experience with long covid :( and I was really saddened to hear that you weren't awarded PIP. I just went through the PIP process recently, and my mental health support worker who helped me fill out the form said that lots of people have to appeal the decision because they get denied it. I really related to what you said about feeling like a part of you has died and watching everyone get on with their lives and not being able to do those things. thank you so much for sharing your story, I really hope that things get better for you. sending love xx

[@kimcreatesstuff]

Back in 2017, I caught a flu they were saying was a new strain. Within a matter of 4 days, I was in the ER with low oxygen. They sent me home with Tamiflu saying "oh you just have the flu, you'll be okay." 24 hours later, I was in acute respiratory failure. My oxygen was at 54% and falling. Turns out I had double pneumonia and fluid was building up in AND on my lungs. I was then hospitalized and put into the critical care unit. Over the week I was there, I had several doctors and specialists coming in and out of my room doing tests and taking blood work and samples. All in various forms of PPE including one team that was in full on Hazmat-type suits. They told me they were sending my samples to the Virginia Department of Health and the CDC because whatever strain of flu I had wasn't one they had seen and wasn't covered by that years flu shot so they were baffled why a somewhat healthy person could go from having the flu to it turning into pneumonia in less than 5 days. Over the next 6 months, my energy never returned. I was exhausted all the time, my hair was falling out, my skin looked terrible. My pulmonologist informed me that I had damage to my lungs thanks to the pneumonia. That Fall, I get a phone call from my doctor who tells me he had been contacted by both the CDC and the Virginia Department of Health. The strain of flu I had was a strain of something called Covid. He said not to worry it's just a SARS-like virus and a bad flu, but nothing to be concerned of and these lingering symptoms should improve. Well, they never did and every year since then, I've got pneumonia. When the pandemic happened, I was scared out of my mind because I remembered what my doctor told me back in 2017. I actually made peace with the idea that if I caught this new form of covid that I would likely die because the media made it seem so bad. I did catch the omnicron strain in 2022 but got over it pretty quickly. I've been lucky. Thanks to diet and lifestyle changes since 2022, I've seen my health improve. I've even managed to get off some of my pulmonary meds. I completely understand where you're coming from and just know that we are here for you. Stay strong sis.

[@Factotum1975]

Thank you for sharing your story and experience with long COVID. It’s really important for people to hear about. ❤

[@YourTrueShelf]

Thank you Nickelle ❤️ it's a real privilege to listen to your story. I'm a GP, and hearing stories and journeys like yours helps my understanding of what people have been through / are going through, which I hope in turn makes me a better doctor. I always support people as best I can, and I always try to be kind and to listen. I'm so sorry that you've been treated so unkindly by medical professionals. I hear you. I think the progress that you've made is wonderful - I'm sure the trajectory will keep climbing. You have brought so much joy to booktube and I'm sure this video has spread so much light around the community here. Big love to you, friend xxx

[@NickellesNook]

Awwwwww this is lovely!! I bet you’re such a wonderful GP, the kind that’s caring and compassionate. Thanks for being here, I really appreciate it. 💕

[@kkatiebird78]

I’m only seven mins in so far, but wanted to say that first-I’m so sorry you’ve been dealing with these health struggles. It can’t be easy to have your life turned upside down at such a young age and at the beginning of a marriage. Second, thank you so much for sharing your story and bringing awareness to long covid. One of my very close family members has been battling sudden health issues for the last year and a half, and was recently diagnosed with long covid. Their diagnosis has drastically changed my behavior around covid prevention. I was previously diligent about getting my vaccine boosters, staying home when sick, testing when i was going to see vulnerable friends or family, etc, but i had stopped masking, was going to crowded events, and generally not taking precautions unless i was around someone who seemed visibly ill. Needless to say, since my family member’s diagnosis, I’m back to masking any time i leave the house. It’s been very eye opening to now have conversations with coworkers and friends who don’t even know long covid is a thing until they ask why I’m suddenly wearing a mask all the time. Thank you again for sharing your story, and I’m wishing you all the best and hope your health improves. You’re a gem here on KZbin/booktube, and I so appreciate you having this tough conversation with us ❤ ETA: Adding this after watching the whole video. The part where you said you feel like you’ve died because life is going on without you in a sense 😭 you are so strong and generous to share all of this with your viewers. Please take any time you need to recover from filming this and reading all of our responses. You’re not alone ❤❤❤

[@lindarosborough7091]

What a skill for communication and storytelling you have - thank you for sharing your personal experience with so much bravery, vulnerability and grace. Thank you, too, for raising awareness for Long Covid. So, so many people - including doctors! - don’t understand how debilitating and isolating it can be. I am so sorry you haven’t always been supported. I understand what you mean about friends and family not realizing how difficult it is. (Your lovely husband sounds like a gem.) I wish you continued improvement and the bluest skies. ❤

[@NickellesNook]

Thank you 🤍🤍🤍

[@tabithamiscellania]

I had no idea long covid was like that. I'm so sorry you're going through this. I hope you continue to find a community here on KZbin who can support you ❤

[@Heatherskl]

Thanks for talking about this. I’d heard about long Covid, but I had no idea about the extent of the illness ❤❤❤

[@leoniereads1234]

Awww lovely you made me emotional 😭 it just felt like me sitting here talking about my story living with cerebral palsy and how I struggle on a daily basis

[@Em-wb2nv]

Hay I have CP as well and it sometimes not the most happiest time.

[@leoniereads1234]

@@Em-wb2nv yeah it’s not

[@naomimather9965]

I am an avid book lover! And have really been enjoying your channel. As a student nurse it pains me to hear about the lack of empathy you received in healthcare but I know that is many peoples realities. Thank you for sharing your story x

[@jellybebe2753]

Thank you and much support to you, fellow post-viral illness person! You're an absolute legend and doing a huge service for the greater disability community sharing this. Awareness is so important, especially so more people become aware of the ongoing risks of this darn plague and can take measures against them. Greatest respect and kindness to you ❤

[@NickellesNook]

Thank you so much 🤍

[@1marianne]

I'm going through something similar and I thank you for sharing your story. It is horrible when you are not taken seriously and/or told there is nothing they can do. Having to give up driving and your independence is huge. So glad you are getting better and I hope you see more improvement! I'm very happy you started this channel, and glad to hear it is helping you too. I look forward to more videos about books, your life, and your vlogs. Your husband sounds like an angel!

[@readingbytheriver5752]

How brave you are for sharing. Thank you. I expect your video will help 100s maybe 1000s. I have long COVID also. I had COVID in the very beginning - before the doctors really knew what it was - no tests, no treatment, and no real name. A while later symptoms started to popped up -- finally the docs named it long COVID. I have good days and not so good and some very bad days. I plug away - one day at a time. Nothing like you and others. Please take care of you.

[@charlies86angel]

Don’t know if this sounds a bit weird, but I wish I could give you the longest hug right now. I haven’t experienced Long COVID, so I can’t relate, but hearing your story just broke me. I honestly don’t know what to say to give you any comfort (also all the standard things we tend to say seem to be too cliched), but please know that I truly, genuinely hope you get better soon. This process appears to be painfully slow, but I’m certain you have the support from several people here, including myself. Praying for you 🙏🏽

[@myfaaaavevideos]

Thank you so much for sharing your story. I absolutely love your channel, and am so sorry you have had to go through such a traumatic experience. My partner has suffered with long covid and the amount of gaslighting in relation to it is devastating. Raising awareness is so important, thank you ❤

[@lydiiiaj]

I don’t have long covid but for the past 15 months I’ve been dealing with some chronic hormone issues that completely altered mine and my husband’s life. It’s slowly improving and I’m working remotely now too which helps so much. My anxiety is really high sometimes and it’s disheartening to deal with chronic issues but it’s so comforting hearing other young people discuss this. You’re not alone or a burden, even if it can really feel like it sometimes. I’m sending you lots of love and healing 🤍

[@NickellesNook]

I’m so sorry to read that. I also have hormonal issues as well and I know horrible it is also. It does suck that we’re young and going through this, but you’re right, it’s equally comforting knowing that I’m not alone. You’re not alone either and I’m sending lots of strength and prayers your way. 💕

[@maureene7138]

Hello Nickelle. Thank you for sharing your illness with us. I actually am involved in research that deals with long term outcomes of COVID on the pediatric population. It's heart breaking how this disease impacts children's (especially teens). Hope you continue to recover

[@NickellesNook]

I have hated seeing how this is destroying children. It’s just so unbelievably cruel. Thank you ❤

[@Carol_ine0]

Thank you so much for sharing your story about long covid. I have chronic illnesses as well. It started when I had food poisoning and I never recovered. Eating was so painful I fainted everyday, I had severe fatigue, migraines, tachycardia, started being extremely intolerant to so many foods… we didn’t know what was happening to me, they put me on antibiotics, got tested for most things you can get with food poisoning such as bacteria, worms and so on. Everything came back normal except I had inflammation, but not too bad. So they put me on an anti-acids and whoops, I almost died of a heart attack because I was extremely intolerant to this med (trauma ++). 7 years later, I am still ill. It never went away and we still have a hard time understanding what’s going on. I have endometriosis, arthritis, chronic fatigue, still can’t eat without being sick or having to rest for hours before being able to even walk. Some days are better than others but being so miserable (not being able to eat properly, being so tired all the time and cut off from social experiences) triggered severe anxiety and depression. I have lost many friends and my family was barely there for me and never truly inderstood how bad my condition is. When it made me lose 10kg within 2 weeks, I even got many compliments on my looks 🤦🏻‍♀️. What’s strange is that I’m much more gaslighted nowadays than I was before because now my record says I have depression and anxiety, and the meds I had to take for my anxiety made me take 15kg and I still have to be on cortisone everyday so it makes me bigger even if I can barely eat a meal a day. I got covid 4 times despite my wearing a mask still to this day whenever I take public transports and it definitely worsened my condition, I even have quite a bad asthma because of it and memory loss. I think my body could not take it. All of this to say : you are not alone and your video has made me feel a bit less alone today. So, from the bottom of my heart, thank you so so much ♥️ I hope you will get better and better

[@sofiapanasiuk157]

i’m so sorry you have to go through this, and thank you for sharing your experience. i hope that we as viewers can be a small comfort, as you are to many of us. sending you a hug!!

[@Om-nom-nomigon]

I knew next to nothing about long covid, so I appreciate that you had made this video. You did an excellent job at showing just how much LC has impacted you. Hugs

[@JS-kj9yq]

Thank you so much for taking the time to share your story. I have multiple chronic illnesses and the way being ill (especially as a younger person) can completely upend our lives is devastating. Especially with invisible illnesses where able-bodied folks assume you're well is incredibly disheartening 💔. I'm a registered nurse in the US and we have very similar problems with our health system. The payment source is unfortunately different, but burnt-out providers making wildly incorrect (and thereby, dangerous) assumptions and the gaslighting has very negatively affected my personal journey as well. I have high health literacy and can advocate for myself due to my career. But I always think about how much worse it can be for the general public, when even I have experienced the very worst of healthcare. I use this to inform my nursing practice and be so compassionate to my patients. But sometimes I wish I could receive the same compassionate care I give. To anyone out there with chronic illness, just know your experience is valid and you don't deserve what's happening to you. You are worthy of a beautiful life and I am sending you peace and strength 💕

[@NickellesNook]

Gosh your comment really touched me. 🥹 I completely agree with everything you’ve said. Sending so much love to you ❤

[@JS-kj9yq]

@@NickellesNookthank you for your kind response 💕

[@shalyngomes1635]

Thank for being so brave and sharing your story. You opened my eyes to a part of Long Covid. You are truly and amazing person and a beautiful human❤ I live spending time with you through your videos. God bless you and continued healing prayers 🙏🏾

[@NickellesNook]

Thank you so much 🤍 I really appreciate it

[@Evendale12]

Thank you so much for this video and for raising awareness ❤ I'm living with long covid as well and this meant a lot to me. So much love to you ❤

[@charlierewilding]

I'm so so sorry you're going through this. You're so brave. ❤

[@mariavaldes4402]

I am so sorry to hear about your health stuggles.Thank you for bringing awareness because I had no idea of the severity of LC II hope that your story will bring attenton and compassion for those with LC. Stay hopeful and strong!

[@DEBateBookz]

Awww Nickelle, you’re so brave and strong for sharing your story!! The trauma that comes with medical conditions is so so hard to talk about and you’re going to help so many people by raising awareness about LC. I’m so so glad you’re so much better than you were and hoping and praying you continue to feel better and stronger 🩷

[@NickellesNook]

Thank you Deb 🫶🏾

[@paigeobrien5709]

Nickelle, thank you so much for sharing your story. I appreciate your honesty. It definitely shed a light on what it is like living with a chronic illness. I'm glad things are getting better for you and I hope your health continues to improve. I hope you are able to feel the love and support from this online community.

[@intersexcryptid]

As a person who has c-ptsd from medical trauma and like, I've gone through the wringer myself with the health shit, like, this is exactly like my story. The way the doctors treat you, the way they look at you, its even worse than the pain already is and same as you the lesson I've learned is you don't go to the hospital. They only make it worse.

[@inahara8999]

I wish you feel everyday a little better, and eventually back to completely healthy!

[@sarawithoutanH]

thank you so much for sharing your story 🙏🏻💕

[@luise_marianne]

Just sending you a big virtual hug and so much love. You are so strong! As a chronically ill person myself staying positive and optimistic can feel like a fulltime job but the most rewarding feeling is when small things are possible again like getting out of bed in the morning, taking a walk etc. We can be so proud of ourselves! I hope this channel gives you a safe space where you feel comfortable to share but also to distract yourself, it definitely has that effect on me :) All the best, Luise

[@NickellesNook]

Awww I’m sending one right back! You are SO RIGHT!! When you get a day when you’re actually able to get out of bed, brush your teeth and wash your face without feeling in pain or needing to sit down, it’s incredibly rewarding! Being able to go for a walk is a huge bonus! Absolutely. Thank you so much for your kind words! 💞

[@QueenXKnit]

I remember when i got covid and learned that was the diagnostic, how hard I prayed that it would not turn into long covid. I had some tough months but got away from it. Im so sorry this happened to you. You’re so brave to share your story ❤❤❤❤f

[@shannonmoreau2531]

Thank you for sharing this. I don’t have long Covid but have a chronic illness as a result of treatment for a serious condition. I used to go out all the time, loved live music events, and I’ve had to grieve that part of my life. If I’m up one day I’m down the next. Like you said, everything has to be planned and calculated and I’ve had to turn down so many social events which has nearly eliminated my friendships. I work remotely around 2 hours a day and some days those two hours take everything. I wouldn’t wish this on anyone yet I’m glad you shared your story because it does help to know I’m not the only one. Also, I love the book videos! 📚 ❤ 😃

[@NickellesNook]

We’re literally twins. It does make me feel better to read that you’re also working two hours a day as well. It really is one step forward and ten steps back sometimes. I’m so sorry you have to experience this pain. Sending so much love and strength to you. 💕

[@matennehhalima2924]

Hi Nickelle, thank you for sharing your story. I had never heard of long covid until now. Thanks for sharing light on LC. I’m so sorry you had to endure all that. I hope you continue to heal and go back to doing all the things you’ve missed and that brings you joy🤍

[@gabihuber6181]

I feel you so much! Thanks for sharing. Chronicle Girls cant give up. We must live and love the life, we are now in. It is hard to handle, missing all the things „normal“ people can do. (Everything changes and our memories of the past are painful. But I hope in the future these memories are grateful) Sending a big hug.❤

[@healthyholemealbread]

This story broke my heart 😔 - I’m so sorry to hear about how much you’ve suffered and how poorly you were treated by that doctor. I thank god for your husband for all the support he gave you. I’m praying for your full recovery one day xxx

[@MikaelaShea]

You’re incredibly brave. I just started the video and I’m in tears for you.

[@Emma-vd6zf]

I’m so sorry you’re going through this, I knew long covid existed but had no idea the extent of it and this has been so educational! I had a question - how did you go about getting a diagnosis since the doctors were being so dismissive of you? Did you have to go private to get the diagnosis? Sending you lots of love and strength, your positive energy radiates from you even though you’ve been through all this hardship! 💛💛

[@dreamersbreeze]

Hi Nickelle, thank you for sharing, I am sending you a big hug ❤ from a fellow chronic and invisible disease girlie, I thank you for giving us a voice, trying to explain the difficulties around invisible and unrecognized pain. You are so brave and I hope you will soon be able to put those headphones on and go take that walk ❤

[@vecarter569]

❤️🙏🏾🌹❤️ Thank you for sharing your story. It helps others - from the patients who are trying to recover from any sickness...helps their caregivers...and educates friends and family. May you continue to get stronger and better. 🙏🏾

[@abbyburns3127]

Thank you so much for sharing your story. I developed POTs a few years before COVID and now have more of the overlapping illnesses (chronic fatigue, fibromyalgia and endometriosis among other things). It certainly is an eye opening experience and like living in a different world. Sending you all the best. Edit: oof the section about your friends really got me. 100% it feels like the world gets to go on and we don’t 😢 sending a virtual hug.

[@AlyssaMuellerIllustrator]

I have Fibromyalgia ( and other things) which is very similar to ME. Something I noticed about your story is how you talked about how certain things began to change- like when you began to work again. My own story is like that. I was diagnosed young, 14. And for many years thought i would have no kind of life. I tried soo many treatments and therapies and some stuff worked and most didn't honestly because like you, my body is so sensitive. A lot of what worked for me is basic basic stuff like developing sleep hygiene ( no easy task) and eating somewhat balanced meals and getting in some movement . Overtime the realization of how not to underestimate that foundation lead to improved sleep and eating and more ability to be mobile and not bedridden. Eventually I took on a part time job. I've had many crashed but over years became full time and then I became a very useful mentor within my company, commuting a lot , working in 5 stores, training a lot of people . I met my husband and we had a son. All this time from a young age I also did therapy for depression and anxiety by the way because it's all so hard. I often feel like I began to live around 35. I'm so greatful I found the small yes's and built on them. It seemed I kept raising the bar for myself, gradually, and my body would acclimate to things given the chance. I don't know what your future holds but in your dark hours know you're not alone and maybe instead of saying "I cant" acknowledge that you're having the thought that you can't , and maybe see if you can change it to " right now I cant". It might open you up to a more positive mindset and you might start to feel a little more like the you from before. You're not alone 🩷

[@NickellesNook]

Wow this is powerful. Thank you so much for sharing your story, this has given me so much inspiration. You’ve truly been on a journey with your health. Even though you’ve had hardships with your health, it’s wonderful to read that you’re now living again. I really hope I’m able to feel like that again. 🥰 You’re right though, the body does start to acclimate eventually and definitely something I’ve noticed in the last 12 months. Sending lots of love to you 🤎

[@RovingReader]

I am so sorry that you had to go through this and that it’s still impacting you so much. Sending so much love and support ❤❤❤

[@GeraldineRowe]

Oh Nickelle! A big supportive motherly hug from me. You're a brave, strong, amazing woman. Keep believing. You've made great progress so far. I see no reason why you won't continue to do so.

[@nickele]

Thank you for sharing your story. That was quite the opposite of escapism, talking about it so openly (and also listening back to it all over again while editing), that must have been hard, and you're so brave! Sending lots of good thoughts and energy your way! ❤

[@laurennaomi_]

It's devastating to know that this is real life for you. I wish that pain was something we could borrow from each other....because then we'd feel it a bit more, and you'd feel it a bit less. I'm honored to be part of your mini community that is your happy place. And I am hoping and believing for your complete healing!

[@joselynejh]

My heart breaks, thank you so much for telling your story. There are so many people worldwide struggling with LC and getting as many stories out there is so important. You will get better, I believe it! Sending you the biggest hug 💗

[@mjllw2000]

It’s amazing that you’ve shared your story. Chronic illness is so difficult to deal with. Sending you love and light. 💛

[@NickellesNook]

Thank you so much 🤍 I really appreciate it xx

[@placidax95]

Thank you for sharing your story.

[@lisadaria]

Thank you for sharing your story. I didn't even know something like long covid existed. I do hope you will recover fully and go back to enjoying all the things you loved before all this had happened. And shout out to your husband for being so supportive 🖤

[@NickellesNook]

Thank you so so much 💖 I truly appreciate that

[@motherpearl5792]

Wow, you really hit the nail on the head. I’m also going through a chronic illness that has been so debilitating for 3 years. I’m sorry you’re going through this but am grateful you mustered the courage to share with us. I haven’t cried in a while but watching your video brought tears to my eyes. Thank you for bringing awareness I felt so heard/seen. Im wishing you health and happiness ✨💗

[@booksgurrsandpurrs]

Thank you for sharing your story. We love ya so much! I'm so sorry for the terrible treatment you received medically. Please keep going, we are all here rooting for you.

[@kathrynsmith141]

Thank you for sharing your story! It can't be easy to be so vulnerable like you said at the beginning - I had no idea long COVID could be this debilitating. Wishing you and your husband so much peace and joy. Praying for strength for you and continued recovery ❤

[@Onemorebookpodcast.]

Thank you so much for sharing. Am wishing you & your loved ones all the strength & grace that you need as you navigate this phase of your life. We are all rooting for you & are so grateful that you exist 💕.

[@MikaelaShea]

The part about your husband taking care of you had me blubbering. I’m so sorry you went through this and continue to go through this but I’m so grateful you have someone who loves and cares for you through it all.

[@petra2676]

I admire your strenght. Thank you for being so honest and open about it.

[@leaahs13]

Thank you so much for sharing your story, it is really brave. I feel like chronic illnesses are not talked about enough, especially long covid, when it’s touching so many people. I’m sending prayers for you and I hope that it will only get better from now on ❤

[@NickellesNook]

Thank you so much ❤

[@caitmax5564]

Thank you so much for sharing❤ So many people are suffering from this and there is very little awareness and support. You are awesome. I’ve had Covid twice now and am so nervous about the long term impacts on my health.

[@Growingroot_allotment]

I have autoimmune disease and ME and it’s absolutely devastating to live with sometimes it’s soul destroying, it’s such a horrible thing and it’s hard to even have family understand the depth of it and how it effects everything in our lives x

[@philippawood5047]

You are so brave, Nickelle. ❤ I can tell it was traumatic for you to re-live this but it sounds like you have done a fantastic job of accepting and managing your present condition; also sounds like you have a wonderful community of support in your life. Absolutely praying for you and anyone else with LC to recover fully in the future.

[@philippawood5047]

Also, you were a STUNNING bride, so radiant and I adored your outfits. 😍😍

[@lucywells6579]

Thank you for sharing your experience, that was a tough watch, I can't imagine how difficult that must have been to relive. Your Husband sounds amazing it must have been awful for him too to see you suffering. Take care Nickelle ❤❤

[@heathereads]

Thank you so much for sharing. The number of views must say it all - people want to know and understand or hear another voice telling a similar story

[@nataliasjoy]

You are SO strong. I am still watching the video, but I just had to comment. Thank you for making this video - it's definitely something that will change people's lives.

[@Angelwings917]

Thank you for being so vulnerable. I feel like I have a mild form of LC because my brain function has been compromised IMO since I had COVID in July 2020. After I was recovering I remember feeling really scared because when I returned to work I couldn’t understand anything I was reading…it was like I was reading another language…I felt confused all the time…couldn’t remember ANYTHING! I still have moment when I’m confused but the most present symptom I have is my memory…I am super forgetful, I have to write EVERYTHING down or I will forget…if I need to remember something quickly I have to repeat it until I get to where I’m going (say I remember I need to go upstairs to get my phone..if I don’t repeat the task, I’ll forget by the time I turn around to go do the task). I HATE IT HERE! In 2020, I started going to a neurologist because my doctors thought that I may be suffering from early onset dementia…but my God I REBUKE that! 😩 I could on and on 😢 Thanks for sharing your story…remember that you are not alone and the world needs YOU! 🙏🏽

[@NickellesNook]

Gosh that’s horrible. I’m so sorry to read that. You’re absolutely not alone and there’s been a lot of people that have had problems with their cognition and brain function. I also have problems in memory as well, I used to be very sharp but it’s so difficult now. I suppose we’ll found out more as the years go on, but it’s horrible to be impacted. Sending prayers your way xxx

[@tanyalua8774]

This was so heartbreaking and I really admire you for sharing your story with us. ❤❤❤

[@almaseed1413]

Thank you for your witness. You are very brave! I am looking forward to watch your bookish videos…

[@thefuzzybookdragon]

Definitely felt that the first eighteen months was the worst for me too, though I think you have had a harder time of it than I did. Being in my 40s, I think that maybe it is easier for me to accept the loss of who I was and be grateful for having recovered as much as I have (definitely miss having a reliable sense of smell and taste though, and the fatigue and tachycardia are an adjustment). Please know that, even if your life doesn't end up looking how you thought it was going to be, you can still have a joyful life.

[@booksandstick5544]

God will continue to shower His Blessings on you. I pray that you you will continue to heal and feel whole again. Continue to count your Blessings and Praise Him even in this season, believing that it is only a season. You will be healed!

[@leestewart6719]

Thank you for sharing:)

[@camillieeb]

Thank you for sharing this especially on LC Awareness Day. I hope that a few years from now this is a better recognized condition with effective treatment. I wish you all the best.

[@caro0258]

Nickelle, thank you so much for this video and your vulnerability. I am so sorry, both for your illness, and for the isolation and alienation it has caused and continues to cause. I myself am fortunately in good health, but have spent the past four years watching the vast majority of society "move on" and "live their lives" as my world as continued to get smaller and smaller in order to protect myself. This to say that while I cannot claim to understand all of your pain, I do know some of it, and it's fucking hard. We all need to protect each other from this devastating illness, both because it's necessary to be in solidarity with the disabled, chronically ill, and immunocompromised, and because we are all vulnerable to covid. As folks have said, the best way to avoid long covid is to not get covid. Thank you for your advocacy and for sharing your story. In deep solidarity with you

[@NickellesNook]

Wow thank you so much for this comment. This has moved me. I completely agree with you and I’m so sorry that you too also feel isolated. At the end of the day, your health comes first. You do what works for you. ❤️

[@KittyAndTheBooks]

Thank you so much for sharing your experiences. You are so courageous and strong. I must confess, my biggest fear during those Covid years was this. I had colleagues who also got long covid. It is so scary, and it is impossible for me to imagine what you went through. I was so lucky that I got covid the first time last fall, and thanks to the vaccines and all, it was really not bad. I am so glad that you are slowly getting better. Sending you all the best energy for your future.

[@alison_5050]

Thank you for sharing, Nickelle. I can relate to a lot of this and feel for how hard this has been. Post-concusison syndrome has been a part of my life for nearly 5 years now (and POTS ~18m) both are much improved now, thankfully. My journey has been rough, though not nearly as rough as yours. Your work sound amazing - so lucky to have found a supportive employer, and your husband sounds like an absolute gem :) I get it might not always feel this way but you do have such a positive energy, I've really enjoyed your channel since it started. Hopefully sharing your journey will be helpful to others and raise awareness x

[@h.frances]

You are so so brave! Thank you so much for sharing this. I just want to give you a big hug ❤

[@t_traum]

Thank you for sharing🧡

[@NickellesNook]

Thank you watching 💖

[@nissasbookcorner]

I’m sending so much love and support your way. Thank you for sharing your story ❤️

[@NicoleJ.]

thank you so much for sharing, I can't even imagine how hard it is, and how hard it must've been to share your story online.

[@michellegomes2030]

Thank you for sharing ❤

[@eproudfoot2799]

You've really been through it :( as a fellow chronic illness girlie it is tough not to dwell on the negatives sometimes. But you're amazing to be doing this channel as well as a job, even if it's part time. Hope you give yourself plenty of credit and love. Also re: histamine intolerance, you may be able to slowly phase some things back in. In moderation

[@NickellesNook]

Thank you so much, that’s so sweet! 🤎 Oh thank you for letting me know. That’s encouraging to read. I really hope so. I’m going to eventually start seeing a dietitian to help me safely reintroduce foods as I think this will help my mental health as I was a big foodie beforehand. Sending you spoons and ❤️🥄 Thanks for being here xx

[@laurasliwoski]

Nickelle, thank you for sharing your story and for your vulnerability. I have so much empathy for your LC experience, having gone through similar symptoms as well. And part of the trauma is not getting taken seriously by the healthcare system or getting dismissed for a mental health condition. We’re left to figure things out ourselves, and my conclusion is that for some, the delta variant ramped up inflammation, specifically in the brain and nervous system. Anyways, I am so happy to hear that you are in a better place and hope you continue to heal and thrive! You’re not alone ❤

[@raitaamin956]

So proud of your bravery and vulnerability. Hoping for your continued healing❤

[@NickellesNook]

Thank you so much ❤️

[@Tula1987]

I’m wishing you the best ❤ I don’t have long covid but I recently had a health thing that’s become chronic and it’s hard…. ❤❤❤❤

[@booklovingnerd]

I got Covid twice last year. The second time was very rough on me. It’s been a couple months I still feel ill. I talked with my friend and she confirmed I am dealing with Covid long haul like she is. She got Covid back in 2020. On top of that I have ADHD and I am also Autistic. I also have anxiety, depression and PTSD. I was abused and sexually abused as a child so that’s where my PTSD came from.

[@anasofiaaceves]

Thank you for sharing. I want to have LC and can totally relate to how people view you on the outside as lookingfine, but really, on the inside, we might be in so much pain. Now I don't feel so alone. Thank you ❤.