My journey with Long Covid

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Welcome on my first post! This blog is about my recovery journey from chronic illness (Long Covid and Myalgic encephalomyelitis / Chronic Fatigue Syndrome — ME/CFS). In this post I’ll share my journey so far, what helped me, and where I am after 20 months. I remember how important it was for me to read other people’s positive stories, and to know that even in the awful depths of this illness, hope is still possible. Because my story is all about hope.

Before the storm hit

I am a 32 years old woman and I live in France. I got my first Covid infection in January 2024. At that point in my life, I was very active and I was overall healthy. I was working full-time in a fast-paced, demanding job, had started exercising a lot the previous year, and had many personal projects ongoing. I wasn’t the type of person typically considered “at risk” for Covid.

But looking at the bigger picture, I’d had chronic anxiety along with a history of depression. I wanted to keep going at all costs, never allowing myself a break, during my studies and then at work. My body was already sending me plenty of signals that I was running on empty, but we live in a world that teaches us to push through. So I did. I think all of this made me more susceptible to Long Covid.

The acute infection

My acute Covid infection was mild. I didn’t go to the hospital, and for the first week, it just felt like a big cold. I went to see my GP, who told me that Covid was really not a big deal these days. She gave me a 3-day sick leave from work.

After a week of rest, instead of getting better, I started developing some weird new symptoms. I had chest pain and tachycardia just from walking up the stairs at home. I had trouble thinking straight, would wake up in the middle of the night feeling extremely confused. I had an unshakable sense of dread. I knew about Long Covid and people not recovering years after their initial infection… I was utterly terrified.

One night, I had really bad chest pain, so I went to the emergency room to get checked out. All the tests came back fine. I came home and my body completely “crashed”. I spent the whole day in bed with horrible nausea, my body feeling heavy as cement, unable to think straight. Never in my life had I experienced anything like that. In that moment, I knew deep down that something was really wrong.

In the following weeks, the symptoms only intensified. I went back to my GP several times, sometimes barely able to stand on my feet or keep my eyes open. I insisted that something was clearly wrong, but the tests were coming back normal. I was told nothing could explain my debilitating symptoms. I experienced what so many of us experience: medical gaslighting, disbelief, and encouragement to “brush it off”. My symptoms were attributed to anxiety, depression, and physical deconditioning by several doctors.

I couldn’t believe what was happening. I know what anxiety and depression feel like, and this was clearly a whole other monster. Not being heard by the very people who were supposed to have the answers felt extremely lonely and frightening.

My doctor told me to go back to work. Needless to say, it didn’t work out well. I remember trying to work at my computer with a bucket next to me because I felt like I could vomit at any moment. I remember standing in line at the pharmacy, and having to sit down in the chair usually reserved for elderly people, feeling horribly dizzy and weak. Within weeks, I was housebound, then couchbound.

In France, there are very few specialists who know about post-Covid syndromes. I booked an appointment with one of them, but it was 7 months away. So in the meantime, I poured all my (limited) energy into research.

The research phase

At that point, the whole experience felt surreal. My life had come to a brutal stop almost overnight, and no one had any answers for me. I had lost my ability to work, to have a social life, to exercise, and to make projects for the future. I had crazy symptoms with any attempt at physical exertion, but my cognitive abilities were still partly intact.

Given the symptoms I was experiencing, how severe I already was 2 months in, and how intolerant I was to exertion, I quickly found in my research that I was heading into the ME/CFS flavor of Long Covid, which is often described as the worst outcome.

The official medical consensus on ME/CFS is that recovery almost never happens, there’s no cure, and patients can only rely on symptom management for the rest of their lives. Most support groups about this illness are full of people who, understandably, feel really desperate. My fear was through the roof.

I’ve always been a pretty pessimistic person, but for some reason, at that moment, my stubborn brain couldn’t accept that this was going to be my life forever. So I shifted my approach and started frantically searching: “how to recover from Long Covid?”.

I quickly came across many recovery stories and some recovery-focused support groups. After reading and watching dozens of stories, I noticed that a lot of recovered people mentioned working with their nervous system to improve their condition or recover completely. I didn’t know exactly what it meant, but I kept it in mind. I made the decision to remain hopeful and to keep searching for a way out, no matter what happened.

As a reminder, I am French! In this ordeal, I was extremely fortunate to be fluent in English and able to keep reading and speaking it despite the brain fog. English resources saved my life, and that's why I'm writing this blog in both languages: there are virtually no positive resources in French, and hope has been my fuel for the past 20 months.

Getting worse

After months of wild ups and downs in my symptoms, I ended up having panic attacks for several days. This was followed by a major "crash", and over the following months I kept getting worse. I reached my absolute lowest point at the one-year mark.

Trigger warning: I will got into details about the darkest days here. Feel free to skip this part if this is not the right time for you by clicking here. 🖤

I experienced more than 60 different symptoms affecting my whole body, brain, and mind. Some came and went, others were constant. The main one was the soul-crushing fatigue that increased ridiculously with any effort (but something like “full body shutdown” feels much more accurate than "fatigue"). To name just a few other symptoms: tinnitus and auditory hallucinations, brain fog, memory loss, anxiety, sensitivity to light and sounds, pressure in my head, visual issues, insomnia… The list goes on.

At my worst, I was in a very severe state, according to the various ME/CFS severity scales. I was fully bedbound, spending 23 hours a day lying flat. I could only get up to go to the bathroom (some days crawling on the floor). I was struggling to sit up, to eat, and to talk for more than a few minutes. I couldn’t shower for months at a time, so I asked my mom to cut my hair short. I was unable to look at screens, read or listen to music for more than 10 seconds, there was no distraction possible. The slightest noise was unbearable, so I bought noise cancelling earmuffs.

Any time I tried to do a little bit more, the symptoms would increase to unbearable levels for hours, sometimes days, and nothing would bring any relief. This is extremely hard to imagine without actually going through it. How can brushing my teeth or cutting my nails knock me out for the rest of the day?? It is the reality of this illness.

I ended up losing the job I loved. I relied on the full-time care of my loved ones (do the grocery shopping, cooking, cleaning, look after our cat...).

These were the darkest months of my life. I remember feeling like loosing my human dignity, trapped in my own body, and not knowing how I could live like this much longer. Even though I still believed recovery was possible, it was really hard to hang on to hope at this point.

Seeing some light at the end of the tunnel

I finally got an appointment with a Long Covid specialist. She started me on a medication called LDN (Low Dose Naltrexone).

At low doses, Naltrexone is thought to reduce neuroinflammation and regulate the immune system. It was the first thing that showed a small sign of success for me, after every other medical intervention had failed. It wasn’t a miracle and I don’t think it addresses the root cause of my illness, but it gave me the extra 1% energy that I needed to find hope again and stop spiraling downward. I was still stuck in bed, but I started being able to read, listen and watch content for a few minutes at a time!

Note about medication: I am not going to talk more about medication on this blog. I am sharing my personal experience with LDN, but recommending medication is your doctor’s job.

I went back to reading about the nervous system — painfully slowly. I noticed once again that the common theme among most recovered people was that they had somehow managed to calm the chaotic response of their nervous system. So I wanted to learn as much as I could about this and see if it might apply to me. It took me a lot of time and effort to piece together all the information. Today, there’s an overwhelming amount available online, and figuring out what will actually be useful for any one person is not easy, especially with no energy available!

I will make other posts to explain all this in more detail, but here is a brief summary of the main concept:

This approach is called "Mind Body healing". It holds a hypothesis about what could be a root cause of these illnesses:

After a virus or an extreme amount of stress on the body, the nervous system could get stuck into a physiological survival response that creates a cascade of very real symptoms in the body. Bringing the nervous system back into a state of safety would allow it to function normally again, and to stop symptoms.

I’m a rational and grounded person. I needed a scientific approach. This explanation fully resonated with me. It sounded like a logical, neuroscience-based hypothesis that made sense of my entire experience. My body wasn’t broken — it was my brain stuck in the wrong response, and my body reacting to danger signals.

Even better: what this approach tells us is that we have the power to influence our nervous system’s state and help bring it back to normal functioning, which then allows the body to naturally heal and repair.

Acknowledging all of this removed 90% of my fear around the illness (and fear was clearly making me worse). I didn't know exactly what to do yet, but it set me on the path to healing.

Note about Mind Body Healing: I know this field is controversial. I also know there are many people who have been sick for a long time and haven’t found any of this helpful. It may not be the unique answer, or the answer for everyone, but it was for me. So I’ll simply be sharing everything that helped me. You can decide for yourself whether any of it resonates with you, and leave the rest.

Getting better

Within roughly 8 months, I went from 3% to 50% capacity thanks to Mind Body practices and a radical shift in how I approached the illness. It's not very useful to think about exact recovery timelines: we all go at our own pace, we can't rush our bodies to heal. Give yourself time.

I’ll create a dedicated post to detail my process and share resources — but here’s an short summary of the steps I took:

• Learning more about the nervous system science, to convince myself that my symptoms were not a threat and trust that I could recover.
• Allowing symptoms and emotions to be there, letting go of fighting against them, letting go of the fear.
• Doing small things to soothe my body and brain (breathing, smiling, self hugging, watching a fun video, being in nature... whatever I was able to offer my body in the moment).
• Noticing and interrupting toxic thought patterns, to avoid spiraling.
• Cutting myself off from external stressors (world news, negative people, social media…).
• And most of all: focusing on joy and living life, whatever my capacity was. If I could only handle one minute of cute cats videos that day, I tried to truly enjoy that minute. Accepting the state I was in then, while knowing it was temporary, was huge.

I keep improving each week, slowly but surely. I am welcoming symptoms along the way without fear. They will come and go, they are part of the process, and recovery is not linear.

I can now cook my own meals, walk outside, talk with my loved ones, have some fun... and I can even work on this blog for extended periods of time! :) I still have limitations and a way to go, but life has become so much easier and enjoyable. I’m absolutely confident that I’m going to fully recover — though I definitely had to build this belief. I don’t know how long it will take, I just know I’ll get there.

Looking forward

I hear a lot of people say: “I just want my life back.” And I understand where that comes from. But as for me, I’m not going back to my old life. The way I lived before getting Covid was unsustainable on so many levels that it was already making me sick.

So I’m heading towards a brand-new life.

Thanks to everything I’m learning about myself in this journey, I am healing from much more than “just” Long Covid. I am healing from chronic anxiety, trauma, toxic beliefs, and destructive thought patterns. I am healing from things that kept me trapped in suffering for 15 years before I finally hit a breaking point.

When I come out the other side of this, I’ll be more at peace than I ever was. And for that, I’m infinitely grateful.

Don’t get me wrong though. I wouldn’t wish this illness on my worst enemy. Healing my nervous system is the SLOWEST and HARDEST thing I've ever done in my entire life. I went through many periods of doubt and discouragement, and if scientists came up with a drug that could cure Long Covid and ME/CFS, I’d take it in a heartbeat.

I know first-hand how hard this is. That’s why, if you’re in the thick of it, please hear me out:

Don’t loose hope. None of this is your fault.

Keep going, baby steps, one breath at a time.

No amount of self compassion is too much for this journey
(I stole this one here)

Sending lots of love and courage to all of you. 🖤

Next, you can find a recap of my recovery process here.