How it all started- eating disorders and autism
Hi,
My name is Isabelle and I'm a chronically ill equestrian, living with Postural Orthostatic Tachycardia Syndrome, hypothyroidism, and central sensitization syndrome. I'm also autistic 🧚🏻♀️.
I used to be a figure skater and rider, training up to 6 hours per day as well as competing in figure skating, dressage, and Working Equitation. In 2018, I developed an eating disorder (Bulimia), which later turned into anorexia in 2020. I didn't receive any help at the time and started to develop injuries due to under-eating and overtraining. It then went back to bulimia again, which I am now recovering from.
When I finally managed to get help for my eating disorder (ED), they immediately referred me for an autism assessment. I turned out to be autistic, which explained not only why I developed an ED, but also why I was having such difficulties functioning, despite having great grades and being a high achiever. I didn't even know what autism was until the psychiatrist suggested that I might have it. Other than my ED, I've also struggled with recurrent depression, anxiety, and burnout. I also had a pretty severe concussion in 2022 when I fell off one of my horses, as well as Raynauds since 2020.
My eating disorder took over my life, causing sick leaves from school, injuries, and depression. In 2020, I injured my calves and could no longer run (which I loved doing). In 2021, I began experiencing back pain, with no clear cause. Two years later, I fell on my back on the ice and injured it again, which forced me to quit skating. I decided to put all of my energy into dressage and riding instead.
Becoming chronically ill
During the spring of 2022, I began sleeping a lot more than usual. At first, we put it off to the concussion that I'd had, but as the symptoms of the concussion went away, my sleepiness remained. I slept around 15 hours per night and had to take a break from school, skating, and riding as I was so tired. I went to multiple doctors, who all dismissed me. At the end of the summer, I was also diagnosed with hypothyroidism, which had caused rapid weight gain, dry hair and skin, muscle aches, and a general feeling of being unwell.
Due to all of the doctors dismissing me, no one took my symptoms seriously and I was forced to push through. I drank caffeine and energy drinks to keep myself awake and ignored my growing number of symptoms. During the autumn of 2023, I began feeling very dizzy, shaky, and about to faint multiple times per day, as well as having episodes of bradycardia (heart rate below 50 bpm) and a daily headache. I also had a relapse in my bulimia (which I'm now fully recovered from).
On the 25th of December 2023, I woke up feeling sick and never recovered. I didn't have any cough, fever, or other symptoms like that, but my mouth tasted bad and I had worsened fatigue and joint pain. During the following days, I noticed that my resting heart rate was a lot higher than usual (around 100-120, normally 65-70). I started having heart palpitations and got out of breath and tired from walking a couple of steps inside the house. My heart rate was around 150 when just walking around inside or brushing my teeth. It went all the way up to 207 bpm from just standing. I went to the ER due to feeling pressure on my chest, dyspnea, and tachycardia, where they did an x-ray of my lungs, which came back as normal.
The pressure turned into a really bad chest pain that was so bad that I couldn't sleep at night, which made me go to the ER again. My primary care doctor prescribed beta blockers and sent a referral for a 72-hour halter monitor. I was also tested for COVID-19, which came back negative. My blood pressure was abnormally high (140/100 and as the list of symptoms grew longer I started experiencing headache "attacks" which felt like attacks of electricity or lightning behind my left eye, so intense that I started screaming. As school started after Christmas, I spent most of my time in a dark bedroom, with extreme headaches and nausea. I kept on going to different emergency rooms and doctors due to my symptoms, only to be dismissed and told that it was "stress" or "anxiety ". All of my x-rays, EKGs:s and blood tests came back normal, despite me being incredibly unwell.
On January 18th, 2024 I got a tonic clonic seizure at school. I stopped breathing, got blue lips from lack of oxygen, and became unconscious until the ambulance arrived and checked my blood sugar. I don't remember anything from the incident and woke up without knowing my name or how old I was. I was taken to a hospital and admitted for the night, where they sent a referral for an MRI of my brain and eyes as well as an EEG.
Having a seizure made the doctors take me more seriously, however, nothing was found on the MRI or EEG. I kept on going to the emergency room due to severe headaches, eye pain, and an inflammation of the eyelids.
I hadn't been able to ride my horses since before Christmas and was no longer able to participate in school.
POTS
In March of 2024, I finally found a great primary care physician who really took her time to listen. She immediately referred me to tilt table testing, blood work, a physiotherapist, and an occupational therapist. My tilt table test showed an increase in heart rate of 110 beats per minute (from about 75 to 182). I got a referral to a cardiologist, and a rollator and was diagnosed with Postural Orthostatic Tachycardia Syndrome and Central Sensitization Syndrome.
I now have medications for my POTS, both beta blockers and medication to bring my blood pressure up, since it's started to become too low. I also have compression garments prescribed by a lymphatic therapist, drink lots of fluids and electrolytes, eat more salt, and am working on pacing. My rollator allows me to leave the house more often, and I am currently waiting for a wheelchair with an electric motor.
My POTS is believed to have been triggered by some type of infection that I developed on the 25th of December 2023. It's also likely that my history of 3 concussions, stressful life events, and a genetic component played a role.
My sleepiness has worsened and I'm fighting to get testing and treatment at a neurologist. I'm currently sleeping between 15-18 hours a night if not woken up by someone, and fall asleep during the day. I can't drive because of this.
I'm slowly coming back to riding again, and am currently able to ride for 30 minutes at a time, 1-3 times per week (mostly 2). It's quite a big difference from my old life, where I had school all day, rode up to 5 horses per day, and worked in the stable. Nowadays, I need help to prepare my horses and can only do one activity per day. I'm planning on going back to school half-time this autumn, as I only have one year of school left (I'm graduating 3 years later than usual due to multiple sick leaves that I had to take when I had my ED, concussion, burnout, and now chronic illness).
Getting sick has taught me to take care of myself, which I used to be extremely bad at. I've started an Instagram account to help spread awareness and keep me motivated to recover as well as a blog. My goal is to become as well as possible and to be able to get back to my horses and riding.
Where you can find me 🧚🏻♀️🧂❤️🩹
My Instagram is @pots_sorkensresa
I also have a blog with the same name, but it's only in Swedish 🇸🇪.
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