Covid Survivor

 September 14, 2021

It has now been a full year since I contracted Covid-19. I remember those first few symptoms, and how sure I was that I was going to be the mildest of cases. I had BARELY a tickle in my throat, but because of my husband's positive test, my proximity to him, and the nature of my job, I chose to stay home an extra day after my initial negative result. I will always be glad I made that decision. Little did I know, the previous shift would be my last full time shift for at least the next year. 

I tested positive 4 days after my negative test, and the fevers had started. I was still able to walk each day with my husband and we made sure to move as much as possible. Living in our shed so that we could quarantine away from our children was a luxury that I realize many do not have. People started bringing meals and sending up prayers, and we were incredibly grateful, but still pretty certain that we'd come away from this unscathed. 

It was day 8 of infection when we went for our evening walk, and I remember looking at Jeff and saying, "you know what? I'm a little winded. That's weird." I was able to walk about another 100 feet for so before I decided that maybe I should go back and rest and try again later. That night the pain that overtook my body was horrific. My skin hurt so badly that touching the sheets of the bed felt like razors. I tried to get up and make the walk to our bathroom that only he and I had been sharing in the house, and I had to stop twice to try and catch my breath. The following day, I had a telehealth appointment with my physician and she all but begged me to go to the hospital. (Nurses are terrible patients...) I really felt like if I could just get through this little bump in the road, I'd come put on the other side just fine. I think I left for the hospital about a half hour after getting off the phone with her. 

The hospital stay was frustrating and long and really showed me just how little we understand about covid. The staff was wonderful. We just didn't know what to do with people who made no clinical sense. I spent 10 days there, and the massive amounts of steroids I received sent my pancreas over the edge, and I now get to experience being a true diabetic. 

I've spent the last year going to countless doctor appointments, as well as physical, occupational, and speech therapies. I've tried about every supplement available. I read about covid ENDLESSLY.  My physical therapist is incredible, and is truly the only reason I have good days with my breathing right now. His dedication to my health and his fascination with the body's response to covid has been invaluable to me. I'm extremely grateful. 

I continue to experience some shortness of breath. I still have dizzy spells, headaches, crippling fatigue, tachycardia, and vision changes. I'm down to about 1-2 fevers per week. I AM getting better. Each day is a new challenge, and I'm trying with everything I have to get back to being the mom, the wife, the nurse that I once was. 

I know there are those who believe I'm being dramatic, and that I'm making this up. And you know what? That's ok. Honestly, if I hadn't experienced this myself I probably would have never believed the extent to which one virus can transform your daily life. I have an incredible support system. My bosses and coworkers, my family and friends, could not be more supportive and understanding. I know how lucky I am. And thank everything that is holy that I have people to talk to who know exactly what I'm feeling related to long covid. I wouldn't wish this on anyone, but I'm so grateful that I'm not alone. Unfortunately, there are MANY of us. 

I'm grateful for each step forward. I'm grateful that with each fall backward, someone is there to help pull me back up. I'm grateful for good research and advances in medicine. I'm grateful for my vaccine and for those around me who are protecting those of us who clearly don't handle this well. And mostly I'm grateful that after a year of dealing with this, I can still say that I'm a survivor. 

TEENS

So, one of the things I've learned in my 39 years of navigating whatever the hell this life of mine is, that I always seem to do better when I can read about someone else's shared experience. Grieving parents, unfortunately there are many of us, but it is oddly helpful to be able to see that someone else has been where you are, isn't it? Covid long hauler? Nurse? Wife? Sister? Daughter? No matter what hat I wear, there is comfort in knowing I'm not alone. And it is that frame of mind that brings me to this blog...

Teen and tween moms....HOLY HORMONES, amiright?! I don't know why we spend so much time focusing on the "parenting we'll have to do when we have teens" revolving around drugs and sex ed. I mean, that's not even on the radar! We're too busy over here dealing with all the existential crises....good lord. I swear if one more kid says to me, "I don't know what I'm going to do with my life!", I'm gonna lose it. No shit, kid? Me either. And that's always met with,  "oh mom, why do you always say that?" Um, because it's TRUE! This isn't for your benefit or to make you feel better, child. I seriously feel like some days I'm still searching. And guess what?...that's ok. Sheesh. 

I've got 5 of these people in my house. Who thought that was a good idea? If we're not bitching about who stole the last tampon, we're complaining about who's using the most wifi🙄.  I have always said that my least favorite age to parent is 12-13. I stand by that. Yes I love all of my kids, blah blah blah, but come on, let's be honest....they be nuts. Somehow that bridge between childhood and teen years is the most difficult to cross. The fact that I can't do more to help them over it, makes me crazy! I feel like I spend an insane amount of time explaining that we all have insecurities in life, and that we all have moments where friendships shift and change, and that sometimes you're just going to have shitty experiences when it comes to other people. Good grief, I need a counseling degree for this stage, and *spoiler alert*, I don't have one! 🤦‍♀️

But let's get down to the real nitty gritty of what makes this stage of parenting life such a pain in the ass....HOW MANY EMPTY WATER BOTTLES CAN ONE PERSON STORE IN THEIR BEDROOM??? And why???? Phew, I feel like getting that off my chest is a real breakthrough. 

And parenting teens during a pandemic?! We should get medals. All of us. And free booze for as many months as we've parented a teen during this crazy ass time. I mean, we love them, right? But we're used to having days filled with activities and school (the kind where they actually leave your house), and friend dates, etc. Now, don't get me wrong, I absolutely saw the beauty in the extra time with my teens. Most of the time we're so busy with life that we miss out on these precious last years at home, but Lord grant me the serenity....we have HAD togetherness. I think it's ok to talk about both, right? I mean, yes they're great but I also need space in my own brain for my own shit! 

I swear it's like trying to live the lives of each of them FOR them as they figure shit out (because sometimes they really prove their "teen-ness" and you kind of wonder how the hell they walk and chew gum at the same time) while simultaneously letting them go a little more each day. Um, that's maddening. 

It's an endless loop of seeing your babies turn into young adults and being inspired by their growth and also trying not to strangle them for clearly misunderstanding how to change a damn toilet paper roll!! And have you noticed that each time you bring that simple task up to your teen, through clenched teeth, that somehow it is ALWAYS them that has to put the new roll on while their siblings apparently eat bon bons and sunbathe all day?? How is that possible?! Cause I've never seen one of you "apparently intelligent" children, EVER put the stupid thing back on unless there is smoke coming out of my ears.

Yes we do chores. Yes my kids cook their own meals and clean the kitchen afterward. Yes they mow the lawn. But life gets in the way, and hormones, and emotions and feelings push their way into the forefront and those things get forgotten or ignored. So, we get back on track and feel good about ourselves for...about 2 hours, before someone else has some kind of crisis. I knew that running around after toddlers would be exhausting, although admittedly you can't know HOW exhausting until you have them. And I had of course heard about how "hard it is to have teens", but again...CLUELESS until I got here myself. I have great kids. They make good decisions for the most part and they have huge hearts, all of them. And someday, they're going to be incredible adults that change the world. But, for today, if they really want to bring that tear of pride to my eye...toilet paper is the answer!🤦‍♀️

Writing Therapy

 I had some more appointments for post covid syndrome today. I hate going to the doctor. I think most nurses do! We can be truly awful patients. :) Sorry, docs! I felt compelled to write today because something has been weighing on my mind, and writing is my best therapy. Now, some may say, "then get a journal and keep it to yourself." I know I could do that, and lots of times I do. I have a notebook and pen next to my bed for when my brain can't turn off at 3am. But I write this blog, and share with others because I've had some really special moments of human connection related to something I've written. When you experience something of significance in your life, whether positive or negative, you seek out others who understand. It's just human nature. 

When I wrote primarily about seizures and the life of a mother caring for a child with a mystery diagnosis, I was able to connect with many other moms in similar situations. We became a sounding board for one another. We shared our joys and triumphs over epilepsy, as well as our deepest fears related to our fragile babies. 

Years later, when I became a broken mother and my son was taken from me in the worst way possible, I belonged to another group. I still hate that this group exists, and I hate even more that its growth is infinite. However, I needed it. I needed the camaraderie. I needed to be able to say seemingly outrageous things and have them simply nod along, knowingly. There is power in that. There is peace....

So fast forward to today, and my desire to share my experiences with this damn virus that has stripped me of my "normalcy." This virus that has taken everything I know as a nurse and thrown it away in one fell swoop. Covid-19 has been a buzzword. It has caused rifts in relationships regarding it's very existence. It has literally stolen mothers, fathers, sisters, brothers, children, friends from their loved ones. But despite its fame, despite the differences in interpretation of this virus, for me, it's the thing that I continue to deal with nearly 6 months after initial infection. It's not something I can ignore or something I can "remain positive about and pull through." And that's maddening. I can't just wish it away. I WANT to. Believe me, if there were anything I could do to speed this recovery process up, I would do it! Yesterday! But there isn't. And I'm having to learn patience...patience at a snail's pace. I'm having to learn mindfulness, and breathing, and "practicing the pause" in a very real way. In some ways, I'm grateful for the experience, because there is literally nothing else I can think of that would have caused me to SLOW DOWN my life and take it in. I've been more present. I've been more mindful of the moments that I do get that feel more like "me". But, I'm also so very ready to be done with this lesson. 

I recently experienced someone questioning my illness and claiming that I am "attention-seeking and have likely hit the guiness book of world records with my number of covid days." Now, upon discovering that the coward making the comment was a fake name used on facebook in order to make unkind remarks on several pages, I was able to let it go more readily. But I won't lie, when I first read it, it hurt. I struggle constantly with guilt over not being able to work or to parent my children the way I'd like to. I'm not able to be the wife I want to be for my extremely supportive husband. So, reading that, and for a brief moment allowing even a fictional person to validate those deep fears was stomach twisting. I've since learned who the actual person is, and that too has helped to allay any fears of truth to the statements made. But it did make me think about how cruel and unkind people can be when they aren't standing in front of the person they intend to hurt. I think this translates well to pandemic life and this past year. I think we can do better in our efforts to meet someone where they are and to accept that their experiences, although perhaps not felt by you, have validity. It shouldn't matter that everyone you know "only had a cold." You shouldn't have to know me to care about the fact that I'm struggling with the after effects of this virus for so long. And it isn't even about me, or covid, actually. I guarantee you I've broken no records with my "supposed days of covid". I'd venture to guess I'm not even in the top 1,000 sufferers. People from all walks of life, from all over the world have been suffering far longer than I. But forget covid. This is the same for fibromyalgia, for multiple sclerosis, for Parkinson's, for depression, etc. There are people everywhere fighting silent battles all the time. Be kind. Be compassionate. And honestly if you can't do those two simple things, just be quiet. 

Today while in my first appointment with an occupational therapist, she was giving me tests to evaluate my cognitive abilities. I can't describe how different it feels to use my brain now as opposed to pre-covid. I have to look at things differently in order for them to compute in my head. That's a terrifying feeling. As she continued through her list of questions she asked, "do you have trouble stepping up onto a curb?" I immediately thought, "no". But I hesitated and described for her what stepping up onto a curb looks like for me now as opposed to pre-covid. I'm absolutely capable of stepping up onto it without falling, BUT I have to THINK about it before I do it. Do you make a conscious effort to think, "ok, now I'm going to have to raise my foot" in a way that interrupts other thought processes in your brain? I do now. And that thought rocked me. All of my previous guilt about "being lazy" or "not pushing through" seemed to melt away in that moment. I'm sick. I'm STILL sick. And that's ok. I have to do what I'm able to do when I'm able to do it, and not a minute sooner. 

And if I want to write about that, and share my experiences with others with the hope that even one person out there feels less alone, I'm allowed to do that. I have no hidden agenda. I have no "ideology" related to covid. I'm just a person who caught this awful virus and for some unknown reason, am one of the MANY, "lucky" ones who get to sort through the fallout of its negative effects on my body and mind. 

I don't know when I'll be able to do several tasks in one day and not have to nap. I don't know if I'll ever have another day where I don't have a fever. But I do know that a few days ago, I felt like myself again. I realized at that time, that I'd been lying to myself about feeling good before that. I'd accepted that "good" simply meant having only a few symptoms to deal with that day. But the truth was, this was the only day in the last 6 months that I have truly felt like myself. And THAT "me" is what I'm striving for. SHE is the person I'm working to get back to.  SHE is worth mentioning and sharing. I lost her once, when my sweet boy left my arms....I will not lose her again. 

We're not crazy....right??

 "How are you feeling?" I don't know. I don't even know how to begin answering that question. Are you asking because you're genuinely interested, or because that's just what we do as humans when we've heard someone doesn't feel well? Honestly, I understand either perspective. I do the same. But good god I have no idea how to even being to approach answering that question accurately. 

How am I feeling? Well, some days I feel so close to my normal self that I chastise myself internally for not "doing more" or ultimately "going back to work". Some days I just feel mildly crappy....like I'm on the verge of becoming ill, but not quite yet. And still other days I wake up and every time I move, I hurt. My lungs scream and burn with effort. My stomach rolls and rejects food. All food. Sometimes even water is questionable. My head feels like someone is squeezing it in a vice and just slowly twisting further and further into my brain. There are times that all of these symptoms last only an hour or two, and the rest of the day I'm relatively functional. If I do try to do too many things that look like living, it's like I pay for it in one way or another. 

I see specialists. I have labs and tests. Often. It is  so unbelievably disheartening to have test after test come back "negative" or "normal". That isn't helpful. Because I'm still sick. I still feel terrible. And I don't ever know when it will be so terrible that it's debilitating. I don't know how to plan life that way. Hell, I don't know how to plan an hour that way. I have a newfound respect for all chronically ill patients. This sucks. I'm sorry you've gone YEARS without relief. It's miserable and no one deserves to live like that. Every single time I go to the doctor, she has to prove to short term disability insurance that I can't work. The last time they asked, they called and followed up because we hadn't sent the lab and test results that prove that I'm still too sick to work. Well, you see, that's a problem because WE HAVE NO IDEA WHY I FEEL THE WAY I DO. When can I come back to work? No idea. Why can't I function for longer than a couple of hours at my normal capacity? I don't know. And the thing is, my employer has been incredibly patient. I can't imagine if I were someone who was feeling pressure to return when we literally just can't. It honestly wouldn't be safe for me to do my particular job in my current state. 

My physician is incredible. She continues to cling to hope that I'll actually recover someday. One of us should, so I'm grateful to have her in my corner. Thank god for my therapist. That poor woman needs the world's biggest raise. But this isn't just a bitch and moan post. I promise :). I'm actually writing because some days when I just can't take the disappointment anymore, I read accounts from thousands of other long haul covid patients and it makes me feel less crazy. It makes me feel less alone. I know it typically makes people feel better to think that they'll get covid and won't be me. That I'm some sort of outlier. But that just isn't true. I'm not a unicorn. There are millions of us, and we're all different races, genders, body shapes and sizes. I wish there were a rhyme or reason to why some of us become so ill and others don't. While we're on that subject, maybe refrain from talking to a long hauler and saying, "really?? I just had a sore throat for a few days." Oh yeah? Great. Truly. I'm happy for you. But....I don't know what the hell to do with that, so...let's just not. For those who need to know that they aren't crazy and that someone else feels the weight of this damn virus, here I am! Over here! Probably celebrating the fact that I can typically walk down a flight of stairs now...