This is a retelling of one person’s experience, not medical advice. If you have symptoms that worry you, speak to a doctor.
Why the author put mental health first
The original post opens with its final section, because the author considered it the most important. His point was that long Covid is a mental struggle as much as a physical one, and that an infection can bring underlying health problems to the surface. He wrote that exhaustion, seizures, chronic migraine and severe anxiety pushed him to a darker place than he had ever known, and that at times he felt suicidal. He stressed that nobody around him necessarily knew, which he found the most frightening part, and he urged readers to check on anyone dealing with a long-term illness.
He also admitted that he used to believe you could laugh off almost anything. That approach, he said, works for small problems but fails when something serious arrives. His suggestion is to speak to a friend, a parent, a therapist or a doctor, and to remember that you do not have to announce that you are seeing a therapist if you would rather not.
Advice for people with long Covid
The author offered ten suggestions, summarised here in new words.
- Doing something is better than doing nothing, so find activities beyond streaming and leave the house daily.
- When you feel like hiding, try doing the opposite.
- If others do not get in touch, reach out first; people tend to reply.
- Social media can help or harm, so use it deliberately, and consider deleting it for ten days if it has you hooked.
- It is natural to drift from some people, and close friends matter more.
- Many people will not understand, but a calm one-to-one chat can help.
- Never feel guilty about lowering the mood in a room.
- Some topics are hard to share with certain people, so find someone else to talk to; therapy is a better choice than alcohol or drugs.
- Play music that lifts you, and sing along.
- Do what suits you, nobody else.
Advice for friends
- A long illness is isolating, so keep in touch regularly.
- A simple “how are you?” is not enough. Ask how the person is coping mentally, whether they want to talk, and when you can visit.
- Large gatherings may be too much, so visit alone or in small groups.
How it started
The author moved to Madrid on 9 December 2020 to work as an English teacher. Four days later he developed dizziness, as though the ground were moving, and he travelled for a week of training in Zaragoza while feeling worse, with breathlessness, sensitivity to light and constant tiredness. A comic mix-up with luggage on the trip left him with someone else’s suitcase. When he returned to Madrid he noticed that he could not smell strong aftershave, and his Covid test came back positive.
The worst night
He isolated in his room from 18 to 28 December while most flatmates were away. The fatigue and breathlessness grew, and he compared them to the way you feel after climbing a steep hill while carrying a rucksack full of bricks. On 26 December he experienced pins and needles in his left foot that spread up his legs, followed by spasms and a jolt in his ears. He thought it was an anxiety attack. He also had repeated falling sensations and jerks about every five minutes.
On 27 December an ambulance took him to hospital, where a lung X-ray found no pneumonia and he was sent home to isolate for another ten days. He later learned, according to his account, that Covid had affected his vestibular system, which helps control balance, and that the strange sensations were focal seizures. His understanding is that the balance disturbance may have set off a previously undetected brain bleed.
The scan
He kept working for four months because he did not want to lose his new job. Because many symptoms were neurological, he was eventually sent for a brain MRI. The radiologist asked whether he had ever suffered a major knock to the head, and a few days later his doctor wrote that the scan showed signs of a past haemorrhage.
The fall that came first
In summer 2018, after a night out, he climbed onto a row of garage roofs with friends. A section collapsed and he fell about nine feet, landing on his back and hitting his head on concrete. He was assessed the next day, and a spinal X-ray showed no break, though no head scan was done. Months later an MRI found crush fractures in his vertebrae, and he still lives with back pain. He realised only later that the head injury may have had lasting consequences.
An epilepsy diagnosis
Back in Spain, a second MRI suggested the bleed was old, probably from the 2018 fall. He then underwent a 24-hour EEG with 32 electrodes attached to his scalp, including a test with flashing lights. He noted that light-triggered epilepsy accounts for only about 3 per cent of cases. He passed that test but was diagnosed with focal frontopolar epilepsy, which he was told had been triggered by Covid. Five and a half months after arriving in Spain, he left.
A year on, he was still searching for a medication that worked. Seizures were milder but continued most nights, and he had stopped driving and cycled instead. Drinking more than a couple of drinks or overexerting himself made them worse. Balance problems and a persistent migraine remained.
Never give up
The author said he did not cry until October 2021, when he realised he needed to talk to someone. He came to see mental strength as the willingness to be vulnerable and to face frightening things, rather than hide. He had not recovered physically, but he felt his mindset was healthier, and he hoped his list would help others.
For what happened after he returned to the UK, read Part II.