Covid Vaccine Side Effects....

I've been hesitant to say anything on social media about my choice to get the covid vaccines. I know many of you will not approve, so please don't start an argument with me. I spent a lot of time researching the benefits vs the risks, and I decided that the benefits outweigh the risks, especially due to my health situation. Covid has the potential to undo all the hard work I've done to manage my illnesses, and I'm not willing to throw away 8 years of intense work to have this level of stability (and I'm far from stable!) I determined that the vaccine is less likely to cause me long term harm than Covid itself, and it would completely idiotic to assume I won't catch covid eventually.

I would go into more detail on my research, but I don't have much energy at the moment. It all boiled down to UK studies showing that people with post-covid POTS were going into remission from the covid vaccine, and the rate of people developing POTS from Covid is substantially reduced in vaccinated people. The last thing I want is for Covid to worsen my POTS. The vaccine side effects are better than worsening my POTS. I also just don't handle viruses well. Ever since H1N1 I haven't been able to handle getting sick. I take really good care of myself and don't get sick easily anymore (I did as a child and teenager), but now when I do get sick it knocks me out twice as hard and twice as long as everyone else. Covid could be really dangerous for me. I've been avoiding people the best I could, but it wasn't possible anymore since fewer and fewer people take any covid precautions. 

But I do want to share a bit about my experience to contribute to the conversation. I was hesitant because I was nervous about how my body would react to the vaccines. Last year I had a tetanus shot that left me with side effects for 2 weeks! It was miserable! But my motivation to help end this pandemic (since not enough people are willing to get vaccines to help protect the most vulnerable) fueled me to research this covid vaccine and just do it. 

I got the Moderna because I have the most trust in their company.

My first shot gave me 3 days of side effects. It was not fun, but it wasn't as severe as I worried it would be. I tasted metal in my mouth, had a constant headache, lots of heartburn, my gut was in a lot of pain and caused some unpleasantness in the bathroom, my joints were swollen, I had occasional chills, a sore throat, and my toes were more purple and freezing cold than normal. The 4th day was better, so I went for a walk that ended up being more strenuous than I could handle, and left me with another couple days of malaise and fatigue. I wasn't ready for exercise and I paid hard for it. Then I started to return to my "normal," but all month I had a struggle with chest pain and heart burn. I kept taking so many pills to try and stop it and nothing was helping enough. I had to go home early from work a couple of times because the chest pain was so bad that I couldn't focus. I had about 1.5 weeks where the chest pain and heartburn subsided before getting my next shot.

Then I got my second shot 5 days ago.

Monday morning at 10 am I got the shot. It only took a few minutes for an elevated heart rate to start bothering me. It took about an hour for increased fatigue to settle in. By 5 pm that evening I was in pain. A LOT of pain. I don't just mean my arm. It was like a full blown fibromyalgia flare on steroids. 

Tuesday morning I woke up in tears. The pain was enough where I considered going to the hospital, and then it felt like I had the flu on top of it. Every muscle in my body was screaming, tense, and giving me sharp pains when moving. My calves were twitching and spasming. My circulation was much worse than normal and my toes were so purple and cold that I couldn't move them. My neck and head felt like they were imploding - like they were filling with gas that was trying to expand them. I couldn't touch my skin because it was tender and sensitive the way skin is with the flu. My fatigue was strong enough that it was really hard for me to get out of bed and take anything to help. I ended up collapsing when trying to stand up. It wasn't possible for me to stand in one spot. If I was on my feet I had to keep moving or I would faint. POTS made the vaccine worse, or the vaccine made the POTS worse? Don't know.

Wednesday was still very bad, but different. The body pain mostly moved up to my head and chest, but my joints still ached mildly. The chest pain began, the heart burn kicked in, and my headache was worse than ever. The sore throat begin. 

Thursday the pain reduced enough where I felt relief, but the chest pain continued. I could finally start using my arm mostly normally. The fatigue was still too much, so I couldn't accomplish much. The sore throat and headache were bothering me a lot. I was still icy cold. 

Friday, yesterday, was the best I had felt all weak, but a new problem occurred: diarrhea. I don't just mean a little. It was dangerous to be away from the toilet. My body was in purge mode. It lasted the entire day up until bed time. I had to go grocery shopping, and it was the scariest grocery shopping experience since all I was thinking was that at any moment I could have to drop everything and run to the bathroom. My fatigue couldn't improve much under this situation. My chest pain reduced a little bit. The sore throat and headache reduced too, but still came and went. I noted how incredibly pale I looked. I was just out in the sun for most of last week, so I have a decent tan. My face was sheer. 

Today, Saturday: My head is still going in and out of a mild headache. I don't get headaches often, so this is not normal for me. My stomach and gut still give me occasional sharp pains and gurgles, but I returned to solid. My fatigue is still stronger than my normal, but I had a cup of green tea to help me get something done today... which is writing thig blog, apparently. I still feel like it's too much effort to get out of my chair, but my mind is working better than it has all week. I feel like I might be in the stage where I'm past the vaccine side effects, but my body has to recover from being so sick. 


If any of you understand how to read sleep data, then here are my Oura Ring results from Monday night into Tuesday morning:

  

For reference, here was Sunday night into Monday morning:

Chronic Fatigue is not "Boring"

Someone asked me recently how I'm not bored spending hours alone with only myself daily. 

First, no. The nature of chronic fatigue is to not have the energy to do much. It's not boring to be fatigued. It's like being lost in a meditation that I can't wake up from on my own. Time doesn't feel the same as when I have energy to work with. Time doesn't feel linear, it feels like something that I have to remember exists.  

Second, do not underestimate my ability to dream for long hours, even without falling asleep. If I had it in me, I would write novel after novel about my dreams. Many, however, are in very slow motion. I experience many images that last me for... who knows how long? It's not boring, it's allowing me to stay alive with my feelings while I can't physically participate.  

Third, even if I was healthy enough to take on the world like the rest of you act like you are (are you really?), I'm naturally very introverted. I'm not anti-social. I love to make deep connections with people, even if they are not lasting. I draw my energy from being alone, whereas people drain my energy. I have always needed to spend time alone every day to be with myself. 

Fourth, what does it matter? This is my process to allow myself to successfully come out of my shell and use my energy out there in the real world. I'm not turning to pot, alcohol, heroin, pain kills, and other substances. I'm just resting. I'm just zoned out. I'm not turned on, and I don't want to be. How can it be boring when I'm shut off?

Fifth, do you know what happens when I don't get to be boring and be alone for hours daily? I fall apart and crumble away until I'm completely unresponsive to people. The headache, the throbbing in my ears, the heartburn, the gut ache, the fibromyalgia, the chest pain, the endless internal screaming for mercy... I simply cannot over spend my energy without my body protesting hard. So I ask again, what does it matter to you, if it means I can be present and engaged with you when I am alert?



But... there is this incredible thing called the internet. I feel like I have the ability to be more myself online than in reality. The internet removes the stimulation that drains too much of my social energy in person. No body language, no vocal inflections, no eye contact, and no environmental stimuli. I can laugh without expressing it. I can take my time to think about a response instead of just react. I can watch a video of someone or listening to their recording as many times as I want to really absorb what they're saying. I can lay down in bed without having showered and my hair a hot mess while having the time of my life talking with people all over the world without seeing each other. How many evenings have I spent too exhausted from my day to physically do more than lay in bed, but still have a desire to connect with someone, so I join my friends in my mobile game?

And the beauty of the internet is that when I've reached my limit of what I can handle, I just put my phone down and close my eyes. I don't have to explain that it's time to go. I don't have to watch someone get angry with me for zoning out while talking to me. I don't have to physically walk away. I can just set my phone down. 



I have times when I'm so blood deficient that I'm not social for weeks at a time. As if chronic fatigue isn't enough, I have a problem with endometriosis causing me to bleed heavily during ovulation too. Imagine bleeding for half of every month. I think any person would feel exhausted by this too. I'm going through this right now. 

I tend to feel extremely heightened emotions during these times. I don't want to be social, but I do want to play out my emotions and experience them deeply. It's a lonely feeling because I don't want to engage with another person to feel these emotions, partly because it takes energy I don't have, but also because I'm afraid they won't be able to feel the emotion I need to feel with me. If they can't make me feel how I want to feel, they'll only drain me further. So this is why I turn to music. I can be extremely selective and picky, choosing to only listen to songs that fit what I need to feel. 

Today's song? Well you see, someone on youtube made a video of the same song playing for an hour. It couldn't be more perfect for what I'm feeling today. The mood of the song is exactly right. (Forgive the F bomb in it - but it's one of those appropriate uses, not an excessive, boring, and rude usage.)

"What A Day, What a Life, Ahhhh"

Oh, just think about how much I could be writing about! What a year. What a drain. Energy vampires around every corner. They suck me dry of the desire to write about it. I do have a desire to share this with you all though.

I know I have written about music many times here. Music is incredibly important to my mental, emotional, and spiritual health. There are several artists who speak to me that I love and adore, but London Grammar is the one band that produces the sounds that speaks about me. They are the sound I would produce if my body was a musical instrument. Want to understand how I'm feeling on the inside? There's always a London Grammar song for that. Have you seen those devices that amplify the energy that plants emit, and it sounds like ambient music? Well, London Grammar is that device for my body.

"What A Day" in particular right now.

I want to break this down for you, because I think this is a great way to explain what I feel like most of the time.

It starts with Hannah's higher head voice breaking down into a low vocal fry soft scream, which she uses to state the mood. Then the slow driving beat of the piano, and her low voice slowly erupts into a type of subtle scream with her "ahhhh." Slowly the drums carry the driving beat forward while the piano sounds more erratic if you pay attention to it.

The textures of the various beats from the piano, drums, and later the guitar perfectly fit my heart beat and adrenaline. They mingle together like they're at odds with each other. They express the current that keeps flowing in my body to keep me going. Do you hear how they sound unsettled, never quite resolving into a comfortable sound? I have that type of forced drive always coursing through me. But even though the tempo is not slow, do you hear how her vocals sound slow, dissociated, and not matching the beat? How her vocals are a different current on top of the foundation? That's my inner voice. Very low energy, despite that drive below the surface, and what I express comes out as a soft wandering frantic anxiety. It takes the majority of the song before she sings an actual melody with coherent phrases, and then it's short lived before she breaks her vocals down again into the pleading soft screams. Do you hear how this song expresses the evening at the end of a long hard day, when cortisol levels should be dropping so you can wind down, but you just can't let go to actually rest? That's the state I live in 90% of the time. I'd like to see you function like a normal human being when this is your best energy level.