Further Updates
- Erica Taylor
- Nov 19, 2020
- 4 min read
Now that I am coming out from the cloud that was caused my menses (or as I like to call it, “the gift that keeps on giving”), I want to talk about some of my further updates. Also, special shout-out to my mom for dropping off some special brewed herbal tea to help with the pain and nausea.
I mentioned in an earlier post that my recent ultrasound and MRI results came back. I sent those on to my hematologist and neurologist in hopes that they can shed more light on the findings than the information given to me by my primary care physician, which wasn’t much (See previous post).
In the meantime, my most recent blood tests came back and show that I have a Vitamin D deficiency even though I am taking over the counter supplements and doing my best to get out into the sun where I can. So, I’m starting on higher grade vitamin supplements for that.
As I mentioned in earlier posts, the process of trying to care for ourselves and get better for most long-covid patients is not really existent. There is no clear path forward. We are forging it right now. Long care sites are starting to pop up in various states. But, there is still not one for Georgia.
The only option for most long-covid patients right now is to visit a large mix of professionals, do a large mix of tests and treatments, mix that with homeopathic options and lifestyle changes and pray for the best.
It is a lot to deal with especially when there is little guidance, more questions than answers, and when your illness makes energy and comprehension harder.
I’m sure, however, that a lot of this sounds familiar to a lot of people with long-term illnesses.
Of course, it’s more intriguing and more complicated right now for long-covid patients because of all of the unknowns that come with this little-understood disease and the sheer amount of people currently contracting long-covid complications.
The current numbers estimate that 25-35% of those who contract covid will develop long-covid. As of yesterday’s count there are 11.5 million known cases of coronavirus in the United States alone. That means in the United States alone there could be roughly 2.8 million or more people right now who could or may have already developed long-covid complications.
I am personally hoping that this focus on long-covid may lead to advancements not just for us, but for other chronic illness sufferers as well. That may just be a pie in the sky dream, especially since long-covid sufferers are still battling doctors to even recognise that something’s wrong. But, a girl can hope.
I have done my best to navigate through this by trying to attack things in steps. My plan has been first to get through the tests and then from there shift my focus over to treatments.
I think I am FINALLY getting to the end of tests and beginning to really focus on treatment options. I still have a lung-function test later this month in regards to my chest pain.
But in terms of my brain fog and fatigue, this round of tests is done. So this week, I started working on studying my sleep schedule and studying a process called pacing.
My neurologist had suggested to me that part of my fatigue may be because even though I am sleeping a lot, I may not be getting any restorative sleep.
Luckily, we live in the Golden Age of Technology where apps abound. So, I have discovered several different apps for studying your sleep patterns. I’m currently using an app for Android called “Sleep Tracker.”
As far as I can tell, the way that it works is that it listens to you as you sleep and records the sound. It analyzes based on the sounds and reports to you how often you are sleeping or awake and how deeply you are sleeping. You can also quickly tap the app every time you wake up and use that to record when you wake up and why.
I have only been using the app for a couple of days but even just with the preliminary findings, it’s interesting. It looks like I am not entering REM sleep very often. This could be contributing to my fatigue and my brain fog. So, the plan is to experiment and make adjustments to my sleep schedule to see if it helps.
Pacing is also supposed to help with my fatigue and brain fog.
Pacing is a method used by sufferers of chronic fatigue syndrome (“CFS”) and has been recommended to me multiple times to help with my fatigue.
Essentially, pacing is learning how much energy you actually have to extend and staying within that amount to prevent yourself from crashing.
As I mentioned a few times, I’ve been warned and have learned from first-hand experience about the dangers of trying to push through exhaustion. Pushing doesn’t work because it leads to a worsening of your symptoms.
Instead, pacing teaches you to learn to live within your limits and adapt. By, doing so, you’re healthier, can go longer without symptoms, and can slowly and gradually expand your energy limits.
I plan to talk about pacing and what I learn as I get farther into my self-study course. I’m adding a link to the free course to my link library. But, I am not making an official endorsement of this course yet. I’m not far enough into the course to say whether or not it’s really good. (for that update post, click here)
However, I am hopeful that making these adjustments and adding my new vitamin regime will hopefully soon put me back on the right track.
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