Kathi

Today I am sharing my daughter's story. She will turn 18 this week and has been battling "long covid" for lack of a better term since this past summer. It has turned her life (and ours) upside down.

(not our dog)

I lost it last night when Kathi’s little sister told me that Kathi wanted to buy a used wheelchair on Willhaben (Austria’s version of Craig’s List). I went on a rant about her not needing it, don’t be ridiculous, you aren’t paralyzed, your legs aren’t broken. But of course, as she remarked today, the real reason I was so upset was that I didn’t want things to have gotten that bad. And they aren’t that bad — yet. But the fear is there in the back of our heads.

I asked Kathi to share with me her story in the hope that it might help us to find doctors who might be able to help her. We spent a lot of last fall running from doctor to doctor, but the end result was really underwhelming. Kathi’s condition is essentially invisible, there aren’t specific medications that are proven to help, and traditional medicine prefers patients with illnesses for which there are quick fixes, easy to prescribe. She also looks “fine”. Which means it is really hard when she gets on a crowded tram with me to explain why I frantically look around to see where I can find her a seat. She doesn’t look “sick”. And yet, I have never known my kid to be so sad. My most social butterfly, who was on a swim team for years, who ran the entire Vienna marathon last April, all 42 kilometers in freezing temperatures, in just four hours and nineteen minutes. Kathi is not a quitter. When even she talks about quitting, her thoughts going to dark places as a result of her circumtances, I know I must do something. I just need help to figure out what we can do.

In June I started to feel like I was getting sick. We had the 800m run at school; I skipped it and came home early. It started with stomach problems. I stopped being able to feel hunger. Then the tiredness set in. Then I stopped being able to taste my food. I spent the last week of the school year in bed, only going back for the last day to get my report card. After a week, I felt better.

In July I went to Croatia with my friend for a few days, and then to a birthday party in Upper Austria for a weekend, and I felt ok. 90% of “normal”. But by mid-July, I started to feel off again. No hunger cues. Couldn’t taste my food. For the next week I was again feeling really low, with no energy. I then went to visit my friend in Carinthia and there I felt pretty good the whole time. I was happy, we did lots of hiking. I came back to Vienna and then again felt terrible for a week.

In August I was invited to Turkey on a boat, and there I tried to “swim it off”, spending an hour and a half each day in the sea. But I still couldn’t taste my food, and my stomach hurt after each meal. It was the strangest feeling to not feel hungry when you know it should be time to eat something. On our family holiday I tried to go to the gym and run but I was very slow and felt like I was dying. I wondered if I was just out of shape? Back in Vienna, I even tried to go for a run in the woods in August and I fell down because I felt so dizzy. That was scary.

It felt like I had the flu. My body felt heavy with fatigue, like it was weighing down my entire body. Mentally too.

At this point we intervened and started to take Kathi to all possible doctors, for blood tests, IVs, TCM and acupuncture, and anything else we thought might help. Long story short — we quickly realized doctors don’t really know what to do with “post viral syndrome” or whatever it was Kathi was suffering from. Some doctors even went so far as to suggest “fresh air” or that she wasn’t really sick at all. One offered hypnosis. It all cost a lot of money and did very little other than produce the necessary paperwork to excuse Kathi from sports classes at school. The icing on the cake was a phone call from the sports teacher explaining if such a letter was not produced she would be getting an “F” and not graduating. Not graduating was of course something we think about in the back of our heads every single day. It is the recurring collective nightmare that never goes away.

The vitamin IV made me feel better for a few days, but I felt worse after the NAD+ one. School started and I didn’t feel like myself. I was really anxious, sad, and mad. Everything irritated me. I had brain fog. It feels like you can’t think, like your brain isn’t working. It is not a headache per se, but rather like the link between your body and your brain is broken. My intuition was off. I started to come home early from school on bad days, when I physically couldn’t sit in class any longer. It was all so loud, I couldn’t pay attention. I just wanted to lie in bed in a dark room.

There were some good moments when I felt like 60% of normal. They usually lasted only a couple of hours, sometimes half a day, and they would always disappear by the next day. Now those good moments are shorter. When I do too much, I crash afterwards. You constantly think about how much you have to rest. They call it pacing. My intuition felt off, like mentally I was not the same. You know you have so much work to do and you physically cannot bring yourself to do it. I am always thinking abut how awful I feel.

When I am with friends, it distracts me briefly. Sometimes I can walk up the three flights of stairs at school, other times I have to use the lift (€100 deposit and required a letter to the school director). The more you do, the more you risk making yourself feel worse. Some days are ok, some days are terrible. The worst part is wondering what do I have to pay for in the future, what will cause what? They call it PEM, post-exertion malaise. A walk is not a walk. For my body, a walk feels like a run. It is a full-blown exhaustion. Like yesterday I did nothing and today I still feel shitty. Therefore I don’t know how to plan. The pacing they talk about, it doesn’t always help.

Most days I can’t taste my food; maybe twice a week I can. I know what I am eating but I don’t really know when I am hungry or full. I often have stomach pains after I eat. I avoid making plans with other people because I am worried about my energy levels. I can usually only be around family or really close friends. My anxiety is bad, too. Somehow I am trying to manage the school year but I am nowhere near as productive as I used to be. Everything takes a lot of time, with a lot of help from my friends and tutors. The teachers think I look fine and assume I am fine. At some point everyone stops asking questions.

Recently, my heart rate has been racing when I get up from sitting or lying down.

Today, I walked in the bathroom to see Kathi sitting on the bathroom floor, legs extended in front of her, saying they felt both tingly and heavy, that she could not get up. She had wanted to wash her sweaters by hand in the bathtub. They are still on the bathroom floor, hours later. A task too much for today.

I called a private clinic and spoke with a doctor, who recommended going to a public hospital. “She needs a cardiologist and we don’t have one here today.” I knew a public hospital would be a several hour wait and no guarantee that anyone would be able to do anything. We agreed to wait it out, at home.

Sometimes I feel so tired that even walking to the next room is exhausting. Like a flu I am carrying around. I don’t have energy to talk and mentally I feel awful. It is stressful that this has been going on for so long. I worry about being stuck in my own body while everyone else is living their normal lives feeling normal. I am trapped and no one cares because it is not happening to them. But it is all I think about. It feels like my whole body is failing. It would be better if it was just physical, not mental, too. It is like I woke up sick one day and everything was taken from me, my whole personality too.

You know when you finish a meal, and you feel full and at peace, happy? I haven’t experienced that feeling in ages because my body signals are not working. It feels like my emotions don’t regulate themselves. You go out to eat with friends and you are the only one with no reaction. Everyone is full and happy and you don’t feel either. Emotionally, you are somewhere else. It feels like there is something wrong inside my body and it impacts everything. Some days I did feel like I was doing better. But once you feel bad for so long you forget what it feels like to be normal. It is so frustrating.

Kathi then explains to me what is CFS, chronic fatigue syndrome. She has spent a lot of time researching online, a habit I worry about because I don’t want her to focus on worst-case scenarios. She explains this is all surely tied to her nervous system, she mentions something about mitochondria, which I haven’t heard of since high school biology, and it means nothing to my uneducated ears. There is a risk of permanent damage if you push beyond your limits, she tells me. I ask her if she ever chatted online or in person with anyone going through what she is going through. She shakes her head no.

I don’t want to make it my whole personality but it limits everything I can do. Sometimes my legs feel like I have no control over the muscles, I feel weak, like there is limited blood flow. Shaky, achy, nautious. I can’t get up and walk. I can’t be on my phone because my head hurts.

Why do I still feel like crap when I do nothing? I need a doctor to tell me what I can and cannot do. I need a doctor to listen to me and say something other than “rest”. I deserve to have a quality of life. Something must be wrong with me to make me feel like this. I am not a doctor, why do I have to self-diagnose myself on TikTok? If it was life threatening, like cancer, then at least doctors would care. There has to be a solution, it is probably just more complex. I need to find a doctor who gives a shit.

It sucks, it is a horrible feeling when everyone else is living their normal lives and you are stuck with a sickness that no one sees and kills you on the inside. The doctors say just wait until it goes away on its own. But that is so unfair, especially at 17.

You escape one symptom, another one pops up. Legs stop hurting. Stomach starts. You don’t have a headache, but mentally you are in a bad place. They rotate.

I just need a doctor to offer me some kind of relief.

For readers asking, Kathi has been on low dose antidepressants for a few months now. They have helped only moderately. She cries less often than before. It took several doctors’ appointments to even get the prescription. Many doctors shrugged and suggested her situation did not warrant them. When you have to comfort your previously “high on life” teeanger who is crying herself to sleep every night, you start to speak in a more forceful voice with the doctors. On a second visit, a neurologist agreed to prescribe them.

As a parent, it feels like everything is a battle.

Today, Kathi told me she emailed more neurologists hersef, including one who specialises in CFS but is, according to his website, not taking on any new patients. She wrote him that she is 17 and asked him to make an exception.

This all affects the rest of the family, too. It is exhausting. I no longer have the false hope I had this past fall that this would all be better in a few months. I have no idea if Kathi will be able to keep going to school and try and pass her Matura exams this spring. We take one day at a time, but today I am writing this, with Kathi’s permission, in the hope that it maybe expands awareness and also might lead us to finding doctors who might really be able to help her. You read online about off-label treatments, but given how hard it was for us to access even a basic prescription, I am worried we may need to look for specialists beyond Vienna, which I am of course willing to do.

Thank you for reading. I know this is hard stuff. I know it isn’t uplifting. But when your kid says they no longer enjoy life and don’t know what they have to look forward to when everything they love has been taken away from them (this coming from a kid who used to run five times a week and could do 5km in 20 minutes), and they are about to turn 18 and should have their entire life ahead of them, be making the big plans and dreaming the big dreams, you are willing to try anything.

This is all written with Kathi’s permission, in her words, from an interview she gave me earlier today. We would be grateful for any and all suggesttions and contacts. Thank you.

They say it takes a village to raise a child. This time we need the village to give us advice.