You probably know that the first two vaccinations flared my underlying illness myalgic encephalomyelitis (ME/CFS) for months. Instead of linking to a website about ME/CFS, which is a very complex illness, I am going to link to a story by Laura Hillenbrand. Laura wrote two best sellers that were made into movies: Seabiscuit and Unbroken. This story is her story of when she first came down with ME/CFS.
After about 9 months post first two vaccinations, I was just feeling better when it was time for the booster. Fearing COVID, I stepped up for it. It was a mistake.
The booster triggered a part of my illness called POTS (postural orthostatic tachycardia syndrome) which is a malfunction of the autonomic nervous system. It causes symptoms such as:
• Dizziness or fainting
• Nausea
• Vomiting
• Severe sweating
• Brain fog
• Extreme fatigue
• Blurry vision
• Higher or lower blood pressure
• Faster or slower heartbeat
• Chest pain
• Feeling hot or cold
• Feeling anxious, nervous, or jittery
• Shaking or tremors
• Headaches, body aches, or neck pain
• Insomnia
Of which, I have almost all these symptoms. The biggest challenge right now is I must be horizontal. I tried sitting long enough to take a bath this morning and I had to lie flat with no activity for 45 minutes before my ears stopped ringing and my head stopped buzzing. When it does that I can’t think. All I can do is lay there and wait for it to stop.
I am scared. I have not been this sick in years. It is going the wrong direction. I am getting worse instead of better. I have left the house once since receiving the booster 2 ½ weeks ago. It was to visit with friends. I was gone about three hours. That is the last time I was able to stand.
If I even think about doing anything other than binge-watch TV, I break into a drenching sweat in a 64º bedroom with a fan on me. It actually doesn’t matter if I am too hot or too cold, and I am always one of them, I can have drenching sweats. As I write this, I am sweating just with the effort to think well enough to write this and I am pushing through thick brain fog.
My heart starts skipping beats when I am stressed physically or emotionally. My pulse has dropped as low as 48 and seems to be hovering in low 50s. I almost always have a headache and truly want out of my body. It feels like a war zone with the jittery, anxiety, tremor feelings, brain fog, ears ringing, etc.
I continue to run a daily fever of 100º. I can somewhat control it with advil and Tylenol. I have some medication for the tremors, heart palpitations… but I can’t take it because my pulse rate is too low, and the medication could lower it further. So, it sits in the drawer and laughs at me as I endure all the discomfort of my nervous system being on the fritz.
I wrote this and posted it on my blog because so many folks don’t understand the complexity of this illness. Healthy people in my life don’t understand this level of disability. It isn’t their fault. I didn’t understand it despite running a Fibromyalgia/ME/CFS support group. I had fibromyalgia and really didn’t get how bad ME was until I came down with it.
Emotionally, I am lonely, sad, scared, angry, guilty and feel just good enough to be bored, but not good enough to talk on the phone (which exhausts me further) or even sit up and journal. My ukulele sits in the corner waiting on me. My camping/backpacking gear sits on the shelf and mocks me. I have a Board meeting at the Senior Center a week from today. I don’t have the faintest idea how I am going to manage that. Basically, I am watching my life meltdown.
I am trying not to be fatalistic, just facing the reality that I have been down this road before. I have been at this place and getting worse instead of better. The reality is that for now and for I don’t know how long, I am disabled. This is an even bigger concern because it is my turn to take care of Bob. He should not still be trying to care for me.
I can tell you that if I get COVID after all of this, I am going to be royally pissed!
