Hi, I’m Hannah. This is my story about COVID changing my life. This will be a thread, so here we go:
I got COVID in 2020 (during the first wave, months and months before the vaccine was released) at the age of 23. I am now 28 years old, and I spend every day in a bed.
When I first got sick, I just thought it was taking my body a bit longer to recover. I was exhausted, couldn’t walk, couldn’t breathe well, etc. I thought “Hey. I’m 23. I was an athlete all my life. I have no pre-existing conditions to worry about. I’m fine.”
I figured I’d get over it, but that never happened.
I have since been diagnosed with epilepsy. I have focals and tonic clonics (grand mal). During these, my breathing has stopped in front of paramedics, my heart rate hits 200+, I’ve choked on vomit, injured myself, etc.
I have severe POTS (Postural Orthostatic Tachycardia Syndrome) which causes me to faint daily. I recently was just hospitalized from a faint where I broke my nose, ripped my lip in half, needed stitches for my lip and nose, sprained my neck, had a concussion, etc.
Due to how dangerous my POTS and epilepsy are, I can no longer be home alone. I’ve had concussion after concussion, massive bruises, scars all over my body, broken bones, and more. I also am not legally allowed to drive anymore.
I was diagnosed with Hashimoto’s disease which is one of the most common post-COVID autoimmune diseases. Due to how much my body had attacked my thyroid, I had to have surgery to have it completely removed.
I have debilitating ME/CFS which is not just fatigue.
It affects the entire body. Flu like symptoms, feeling like I’ve been poisoned, muscle aches, joint pain, etc. I have days that I don’t eat because I’m too fatigued. I can barely lift my head on most days. I’ve gotten UTIs from holding my urine. I’ve crawled to other rooms.
There are days where all I can do is lie in the dark with my TV brightness turned all the way down and just quietly listen to the television.
I had cognitive testing a year ago. My score was 24, one point away from a dementia level. I soon will be tested for an updated score.
I can’t remember anything, I have speech problems, I say the wrong words for things, I’ve started to have grammar issues, I can’t pick up new information, I can’t watch new TV shows unless I watch them over and over again, and more.
I was diagnosed with diabetes. While I had COVID, my sugar sat in the 300s the entire time. It just never fixed itself.
My hair fell out in clumps. I had a massive head of hair. I have to use a wheelchair. My eyesight declined, so I now have to wear glasses.
I can no longer do the things I loved to do. I had to withdraw from college after being six years into my PsyD (Doctor of Psychology). I only leave my home for doctor’s appointments and emergencies. I can’t work, and as someone that has worked since 16, I miss it so much.
I live my entire life from my bed while I watch others reach their dreams. I’m sad. I’m miserable.
This is my reality. COVID is still here. Like I always say, you are not invincible. Neither was I.
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October is Dysautonomia Awareness Month. Let’s talk about POTS and things you may not know. A thread:
• Postural Orthostatic
Tachycardia Syndrome affects the entire body
• Heart rate that jumps by 30+ when standing, fainting, pre-syncope, dizziness, blurred vision
• Painful pooling and vein constriction, Gl issues, brain fog, fatigue, inability to regulate temperature, chest pain, palpitations, air hunger, muscle aches and pains, weakness, and more
• Our quality of life has been compared to patients with kidney failure on dialysis
• Approximately 25% of people with POTS are so disabled they cannot work or go to school
• 60% of patients are told it's all in our heads
• The average diagnostic delay for a POTS patient is 5 years and 11 months
• 50% are forced to travel over 100 miles for treatment
And today, I can't. Let's talk about dynamic disabilities! A thread 🧵:
A dynamic disability is one that fluctuates in severity. This can be week by week, day by day, or even hour by hour. It's hard to predict how we'll feel.
One moment, we can do certain tasks. The next, we can't do it at all, or we need extra help doing so. I may be able to meet a friend today but be completely incapacitated and unable to move
tomorrow.
Ambulatory mobility aid users have dynamic disabilities. We might be able to do something without our aids one second and then need it ten minutes later. I know it can be confusing to never know if we'll be able to do things, but please try to be understanding.
ATTENTION ALL MENTALLY AND CHRONICALLY ILL PEOPLE: This is your yearly reminder that your medication could put you at a higher risk of heat related illnesses such as heat strokes and heat exhaustion. Examples:
• Certain antihistamines like Benadryl
• Stimulants such as Adderall
• ACE inhibitors such as Lisinopril
• Benzodiazepines
• Calcium channel blockers
• Some mood stabilizers such as lithium
KNOW THE SIGNS:
Heat exhaustion:
• Dizziness and increased heart rate
• Thirst
• Heavy sweating and pale skin
• Nausea and headache
• Weakness
Heat stroke:
• Altered mental status and slurred speech
• Loss of consciousness
• Extremely high body
temperature
Life lessons from a sick and disabled person: A thread 🧵:
• Learn to surrender. We're told to take charge of our lives and that we can do anything. There are things that are out of your control that you cannot change.
• Your job won't take care of you when you need them.
Your loved ones will. Make time for them.
• There are many things that you think are small and that you take for granted. Going on a walk, going to concerts, traveling, cooking, and even working. Do things while you can. All of the things, and be thankful for them.
• Realize who should be in your life and who shouldn't. Do not give time to toxic people that you can never get back. Someone wants to leave? Let them go. Someone isn't good to you? Let them go.
• Dieting and restricting yourself constantly won't save you from the risk of-
COVID-19 has contributed to more than 40 million new cases of neurological disorders worldwide. People who had COVID are 80% more likely to suffer from epilepsy or seizures. They have a 77% higher risk of developing severe memory issues.
50% more likely to have an ischemic stroke. 43% more likely to develop mental health disorders such as anxiety or depression. COVID was linked to a higher risk of new-onset dementia. A large amount have been diagnosed with
ME/CFS, a debilitating condition.
COVID causes brain damage and structural abnormalities. You're also three times more likely to suffer from heart conditions. A severe or even mild case of COVID can make you more likely to have heart failure or a heart attack.
So, you’re going to doctors and trying to get them to listen. Been there. Here are some tips: A thread 🧵:
• If they blow you off, ask what their differential diagnosis is. This will catch them off guard, and they’ll have to list actual things that it could possibly be.
• Ask them how they ruled any of those things they just listed out.
• If they are refusing anything like other testing, request that they note in your chart why they are refusing. They’ll normally give in immediately.
• Specifically ask what their evidence is against why you can’t have a certain thing or why you don’t need more tests.
• Print out real research and come armed with extra information. This shows how serious you are and that you learned about specific issues and treatments.