Long COVID damage, two years laid flat, now much better; CBT/DBT and dance helped coping
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Mar 2021
In their words
- Condition: Long COVID
I also have long-term effects of Covid, specifically kidney and lung damage.
In context ↗ - At worst: Severe
I spent the better part of those two years laying flat in my back reading medical journals trying to figure out what was going on.
In context ↗ - Now: Much better
Two years later, I’m still able to teach and dance- just not as hard or competitively as I used to
In context ↗ - Began after: injury or surgery
a devastating brain injury that went undiagnosed and caused me to leak brain fluid
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Acorn 65935, a 36-year-old dance teacher, described living for about four years with the effects of an undiagnosed brain injury that caused a brain fluid leak and brainstem/spinal compression. They spent about two years laid flat and had to give up competitive dance; surgery eventually sealed the leak. They were still able to teach and dance, though not as hard or competitively as before, often teaching with braces, while also living with long-term Covid kidney and lung damage. CBT/DBT, mindfulness and dance helped them cope, but effects remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- physical therapist · Not said
lucked into finding a physical therapist in a community forum who specialized in issues related to these type of leaks
In context ↗ - weed and alcohol · Not said
Sometimes I self-medicate with weed and alcohol
In context ↗ - surgery to seal up the hole in my brain cavity · Helped
I eventually found the doctor that sealed up my leak, but much damage was already done.
In context ↗ - CBT/DBT · Helped
practicing mindfulness, and CBT/DBT really has helped me to cope and continue living life
In context ↗ - slow repetitive movements of dancing · Helped
I have used the slow repetitive movements of dancing as a way to ground myself in the present. Movement is huge!
In context ↗
Approaches: CBT & mindset · Mind-body practices · Surgery & structural
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| about 2016 | devastating brain injurya devastating brain injury that went undiagnosedIn context ↗ | Severe | |
| 2016-2018 | laid flat for two years with undiagnosed CSF leakI spent the better part of those two years laying flat in my backIn context ↗ | Severe | |
| after more than 2 years | surgery sealed CSF leak; adjusted to high pressureI eventually found the doctor that sealed up my leak, but much damage was already done.In context ↗ | Moderate | CSF leak repair / blood patch |
| December 2020 | returned to teaching and dancing with braces; long-term Covid kidney and lung damageTwo years later, I’m still able to teach and dance- just not as hard or competitively as I used toIn context ↗ | Mild | CSF leak repair / blood patch |
| March 2021 | still live with effects; CBT/DBT, mindfulness and dance helped them copepracticing mindfulness, and CBT/DBT really has helped me to copeIn context ↗ | Mild | CBT and psychotherapy |
Adverse events
- CSF leak repair / blood patch“After my surgery to seal up the hole in my brain cavity ... the abrupt shift from life with low pressure in my brain cavity to high pressure and trying to keep the pressure low enough to not re-open the leak” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Gut problems
It caused body-wide neuro-musculoskeletal issues, GI, hormone dysregulation
In context ↗ - Muscle weakness
often with various braces that keep my weakened muscles and joints in place
In context ↗ - Breathlessness
struggling to get air into my lungs
In context ↗ - Anxiety & low mood
I manage my anxiety and depression by looking to the things I have the power to change.
In context ↗
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