Sick for six months, when will it end?
By Vicky van der Togt, Netherlands
I got sick with COVID-19 in March, and I still am. Today it is six months after the initial infection and I still have trouble walking and with my heart. Nobody knows how long this is going to take.
On March 6, when the Coronavirus had only just arrived in the Netherlands and the health authorities said that the virus was not too bad (' it's just flu'), I fell ill. I wasn’t feeling so good for a few days; since the 1st of March I had a headache and warm patches on my face, but no fever. Besides, I hadn’t been to Wuhan, so there was no way it could be COVID-19, according to the RIVM. In the meanwhile, I knew better. My symptoms worsened quickly and other family members became ill too. At least 5 family members suffered from fever, stomach problems, or became short of breath. It must be 'flu', right? Meanwhile I was shivering in bed with a fever, got cold-like symptoms, and was so tired that I had to sleep more than 14 hours a day and still had no energy. I also got an extreme headache and started to have blurred vision. I called my doctor, but because I was suffering from a cold I was not allowed to come by. There was also no way to test me for COVID-19 as I had no vital profession and Corona tests were scarce. The advice was 'rest up'. This was easier said than done.
Skin rash, another symptom of COVID-19
After a few days, I also got a rash: shingles. It started on my stomach but quickly spread all over my upper body. It became clear to me that I didn't just have the 'flu'. I had suffered from shingles 10 years earlier, and the fact that my resistance was so low that it could break through again triggered alarm bells for me. I started googling for rashes with COVID-19 infection and soon found out that this was more common. However, the RIVM did not report this as a symptom that occurs when infected with the Coronavirus. I called the doctor with this information, but unfortunately, this was not yet known to them, and they did not want to link the two. After getting a diagnosis of my symptoms through photos on Whatsapp, I was prescribed a course of antibiotics and ointment. You know, the type of antibiotics that helps your body clear up a bacterial infection, but which should not be prescribed for a viral infection, because it can make the symptoms worse. I decided, of my own accord, to go into quarantine.
"RIVM did not mention a rash as a symptom of COVID-19"
The worsening of the symptoms happened quickly. The rash changed shape; it seemed to change from shingles to pityriasis rosea. My whole body felt like it was on fire. The rash made my torso feel like it was full of tiny splinters, which were sometimes itchy and then burned again. It got to a point where part of my body was itchy in the evening, a few hours later an open sore appeared on that spot, which was gone by the next morning. At the same time, my lungs started to protest and my chest and back started to tighten. When I had just gotten sick I suffered from cold-like symptoms; I sneezed often and was very snotty, but I didn't cough excessively, so the pain in my lungs came as an unpleasant surprise. I soon couldn't sit or lie down, and walking became more and more difficult because of the constant pain and sharp jabs in my lungs. The shortness of breath made it harder and harder to breathe, and soon it hurt to simply inhale. In these weeks I called the doctor and emergency post several times, but as long as I could still speak a full sentence, there was nothing they could do for me. "Call us back if you are fully out of breath."
"Call us back if you are fully out of breath"
After the antibiotic treatment (that didn’t work), I got prescribed stronger ointments to heal the skin, but nothing seemed to work. The pain in my lungs got worse and I also had sharp jabs in my chest every now and then. Eventually, I was able to go to the GP practice after 2.5 months because I no longer had flu-like symptoms. In those 2,5 months they had seen several confirmed Corona patients with the same atypical rash. This, in combination with all my other symptoms, made them almost certain that I also had a COVID infection. They listened to my heart and lungs and noticed an accumulation of fluid in my lungs and an abnormal heart rhythm; every time faster, and then suddenly slower. My blood pressure seemed fine, so the advice was to ‘rest up’. Two days later my legs gave out and I collapsed. I got palpitations and started hyperventilating. Now, gasping for air, I called the emergency post; I had to come straight to the COVID emergency clinic. Once there, they checked my resting heart rate (fine) and saturation (also fine). There seemed to be nothing wrong with me, although I did have pain everywhere. Yet they did not want to test me for Coronavirus, because I still did not have a vital profession. So I was sent back home. As a precaution, I decided to buy a pulse/ oximeter, so that I could keep track of my values myself. It soon became apparent that even when walking small distances my saturation fluctuates, sometimes even between 80 and 97 (normal is 95-100). My heart rate while resting was often 130-140, but would sometimes drop to 45 when walking or doing chores.
1 June
At the beginning of June, everyone in the Netherlands with complaints could finally get tested, or so they said. On June 1, I called 8 times for an appointment, but without success. The Corona hotline was down. Finally, I managed to make an appointment on June 3. GGD Haaglanden told me that Test location Westeinde, in The Hague was already full for the rest of the month. The nearest location, Leidschendam-Voorburg, would open in a week. I don't have a car, so I was advised to come to Nootdorp by public transport. When I pointed out that this is very unwise advice for someone potentially infected with the Coronavirus, I was told to come by bike. This while I could hardly walk, let alone cycle, for months. Anyway, 4 hours later (and due to the Corona hotline being incorrectly connected to both the Haaglanden Safety Region, the Haaglanden fire brigade, and 112 operators) it turned out that transport could indeed be arranged if there was no other option. Victory!
The test result is negative!?
I got the results 3 days later: negative. It made me doubt whether or not I even had COVID, but my doctor immediately told me that this result was logical given that I was tested far too late. To be on the safe side, she wanted me to do an antibody test. The message was: 'Do it quickly, the RIVM has just received a message that they want to scale down the administration of antibody tests'. This was on Friday afternoon. I quickly made the appointment and received confirmation that I could come to the test location of the Ado stadium. That Saturday, I was physically in bad shape and going to the test site meant a 40-minute walk from the station to the testing site and back. I decided to get some rest and go that Sunday. Once I arrived at the testing site it looked deserted. 'Am I in the right location? Are they closed?' According to the only available website, the Ado stadium testing location would be open 7 days a week. There was no overview of all the test locations posted on the RIVM or government’s website. GGD Haaglanden, who are in charge of testing in my area, was also not reachable by phone on Sundays and the call center operators at the Corona hotline weren’t even aware of the test location’s existence. There I was, at a closed test location, after I had to gather all the strength I had to get there in the first place. It enraged me that the system was so badly set up and caused me, and many other sick people, to get into situations like this. It was a war of attrition, and recovering from this whole debacle took me 3 days. The following week some guidelines were changed and it was made possible to get tested for antibodies in the hospital. After 3.5 months, I was finally allowed to have myself tested for antibodies in a crowded hospital, with more than 40 people in the waiting room and where no one was wearing a mask. Also negative. Did I not have COVID-19 after all? It soon became apparent that not everyone produces antibodies when going through the virus and that if one does produce antibodies, they quickly wane. Therefore, an antibody test is also not reliable if it is performed after such a long time. My doctor had been convinced that I had COVID for a long time, but for follow-up research, those 2 negative tests make it more difficult to get the right care. However, thousands, if not tens of thousands of people in the Netherlands are in the same situation; just because they became ill while there were not enough Corona tests available to test everyone. It is therefore important that every patient's complaints are taken seriously and ex-COVID patients are properly examined and monitored.
After months of going through the illness at home, I am now finally doing all kinds of physical examinations: X-rays of the lungs (chest), a heart film (ECG), a bicycle test, and a lung function test. There are always several weeks between each examination. It soon became painfully clear that the examination process for people with long-term complaints is too long and needs optimization. For example, it took more than 3.5 months before the first examinations were done. In research into long-term symptoms after COVID (#longcovid), the focus is also mainly on the lungs, while many people, including me, have heart complaints. These messages also stand out from the many online long-COVID peer support groups. The latest studies show that at least 15% of all infections involve inflammation of the heart muscle. In just the Netherlands that means 11,100 people with long-term heart complaints, if we calculate with the figures that have already been estimated far lower than what they really are. The Dutch Facebook group 'Corona patients with long-term complaints' already has 14,780 members, all with a similar story to mine.
Six months on COVID-19
Now, after 6 months, I am so tired of being sick. I often hear others say things like how they’re 'sick and tired of Corona' when they talk about the consequences of this Corona crisis. I too am sick and tired of COVID, but in a completely different way. I am still exhausted day in day out, have difficulties with almost all physical activities and can only walk for about 15 minutes without pain. Furthermore, I still suffer from: headaches, loss of strength in limbs, loss of feeling in arm/leg, inflammation throughout my body, 'brain fog' and I have trouble finding words and following conversations. It's like your body just isn't working properly anymore, in every possible way. My heart also appears to be affected, which causes palpitations and jabs in my chest and upper back every day. I’ve been prescribed heart medication to keep my heart rhythm steady while I wait for a follow-up examination with the cardiologist. However, it has become clear over the last couple of days that I won’t be able to get any care in the next couple of months, because Dutch hospitals are filling up quickly with COVID-patients, and regular care is already being scaled down. As I am writing this we have had a record amount of cases for a week straight, and the extra safety measures that are being taken will probably not be enough to limit the spread at this point. Furthermore, RIVM is still denying the effectiveness of facemasks. Even healthcare workers in hospitals do not wear facemasks, hereby making hospitals possibly the worst place to be right now. The result of all this: The hospital I’ve been referred to for my next examination just reported an outbreak at the cardiology department. This is one of many outbreaks in Dutch hospitals over the last couple of weeks.
I try to remain hopeful that my body will eventually get over this virus completely. Until then, I will keep 'resting up'. With all these complaints and the traumatic course of my conditions, it has been hard and quite emotional to write this piece. This was compounded by my frequent loss of memory and concentration, which makes writing for a long amount of time very difficult. Nevertheless, I hope that this contribution will be of help to other people with post-COVID syndrome. I would like to wish everyone who finds themselves in the same situation a full and speedy recovery and a lot of strength. Would you like to get in touch with fellow long COVID sufferers? Let me know and I will point you to the different peer support groups.