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...