The COVID Booster caused relapse of ME/CFS and POTS

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! 

What Does It Mean

What does it mean

to say hello

if goodbye does not exist?

What does it mean

to have sun on your face

if you’ve never felt the evening brisk? 

What does it mean

to closely hold a child

if you were never held when young?

What does it mean 

to the forest air

if your song is never sung?

And, can you still 

walk with God

if no one ever walked with you?

What joy is there in His love

If you refuse to let it through?

Blanket of Lace

Cherry blossoms fall all around
covering the grass, they grace the ground.

Does the grass say, “remove your weight from me?
You don’t belong here, go back to your tree.”

Or, does the grass revel in the cool embrace
as a cherry blossom blanket of lace

protects its blades from the blazing sun
sheltering its green beauty ‘til the day is done?

And, when the pink blanket lifts on an evening breeze
does the grass whisper softly, “come again, if you please?”

Fear of Writing the Unknown

I have been both conservative in my writing and stuck. The realization suddenly struck that, maybe, these two go hand in hand.

When I say conservative, I mean that I am afraid to step out and write what I don’t know. If I am not familiar with the setting, certain plot points, characters line of work, or whatever else I would need to research in order to write, then I am afraid to write it. This fear is that someone will call me on a mistake I have made because my research was not thorough enough or I somehow made an error in factual information.

So, I have been playing it safe and I have been stuck. This stuckness, I believe, is because playing it safe is no fun. I have a strong feeling that my stories are a bit flat because I am not stepping outside of my own reality. I feel at times I would be more comfortable writing a memoir because no one can argue that it isn’t my story. However, I don’t want to write a memoir, I want to write fiction. Good fiction. Interesting and engaging fiction.

Now that I realize why I am stuck, I must discern how I am going to find the courage to unstick myself and write the unknown.

Am I alone, or does anyone else deal with this same fear? What are your other fears?

All of This Am I

I finished NaNo just in time for Thanksgiving. I am excited to begin the rewrite process. However, before doing that, I am catching up on cleaning house, ignored correspondence, reading all of your wonderful blogs and myriad other things I let slide for the month.

I hope you all have a beautiful Thanksgiving Day! I am thankful for each and every one of you and cherish the friendship you offer.

Here is a little poem for your Turkey Day enjoyment!


All of This I am

Who am I?
I asked the wind.
It blew and blew and blew...
and then
on a cloudless day I asked the sky -
please, please tell me
Who am I?

The sun set and
day melted to night
I looked up to ask the stars
Who am I?

I asked the trees, I asked the earth.
Surely, somewhere I could find my worth.

I listened to the snow softly kissing the ground.
I listened to wild animals all around.

Then one day in a lake mirror smooth,
I saw my reflection and somehow I knew...

I am the wind, I am the sky
I am the stars, the trees am I
I am the snow softly kissing the ground
I am the wild animals all around.

There exists no boundary where I end
and where everything else begins.

I take a deep breath flinging my arms wide
so thankful to know -
All of This am I.

The Wind

Trees bend their weight with the wind.
It pauses...they straighten and then
they bend and bend and bend
never knowing when it will end
or when the wind will come again.

I wrote this poem after the really strong winds we had last night. I was sitting and looking out the window at the trees. After it was written, I realized that it is an allegory for how I feel about my chronic pain and illness. The pain is what it is and will be with me until it isn’t any longer. I have managed to delink the pain from suffering. It is possible to have joy alongside pain.

Fibromyalgia

Clothes hurt skimming over skin,
muscles ache deep within.
Forecast calls for clouds and rain,
another day of fibro pain.
The weather once was my friend...
sun, rain, snow and then
from out of nowhere this illness came.
Now barometric pressure rules the day.