"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...
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