More than one year of Long Covid since Sept 2021 + updates

26th of September 2021.

I land in Milan, looking like a ghost. I can barely walk.

One month has passed since I got Covid and it feels like ages (see my previous post).

I read compassion in the eyes of the hostess that has looked after me during the flight. My best friend comes to pick me up at the airport. A mixed feeling of happiness and wanting to let go and cry endless tears. I made it, I don’t know how. It’s a miracle. I made it, even if I can’t stand on my legs. I made it. Desperation makes you do impossible things. I feel relieved to see my friend. I feel finally at home.

My first night in Milan is the first of a long, very long, series of sleepless and painful nights and days.

I don’t recognise my body. I don’t recognise all this surreal sensation inside me. My internal organs seems to float and move around, kept together by a thin wire. An electric web surrounds my upper body especially on my chest and on my tummy. Those sharp pins and needles all over my body are all still here since last month, from shoulders to feet. I keep doing the diaphragmatic breathing. All the things I’ve learnt in yoga are becoming so useful in this moment. I manage to slow the rhythm of my heart with yoga breathing. My heart is in constant acceleration… tachycardia at 120 even when I’m in a still position.

I go to bed exhausted, but hopeful. I have my first medical check up in 2 days. I try to sleep now. I need to rest.

All of sudden, every night, between 2 and 4am, I feel like I’m drowning into an open sea, as if I’m passing out… These episodes are followed by 2 hours of an electric sensation starting from my hands, arms, going through my abdomen and continuing down my legs… A hot fire is burning my body from the inside. It feels like the blood circulation is stopping. I shiver, I sweat, I get dehydrated. My tongue is tingling and burning.

Will I make it? What is all this? Is this how my life is supposed to end? I don’t want to die like this. I haven’t seen my family for more than 2 years, I haven’t painted enough, I haven't given enough to this world. I haven't seen enough. I hope this is not the end. I’m scared. I don’t recognise the sensations in my body. I don’t recognise my whole body.

Two months and 18 days without sleep. 79 days. 1896 hours.

I fall asleep every 7-8 days only for a couple of hours.

Every 48 hours pains in my body change randomly:

• My right arm is paralysed with pins and needles.

• When i feel it again, then my left leg is painful and doesn’t move.

• When my leg comes back to life, then is the turn of my lymph nodes: swollen and painful around my neck, my armpits, my groin. I can't swallow, I can keep my arms down, I can't walk.

• It’s all so terribly painful. I want to cry. I don’t have the strengths to cry. Now I know that to cry you need physical strengths.

It’s the end of October, I’m still unwell:

• I cannot stand up, when I walk I have to lean forward, I have to hold myself to a friend, to a wall or I have to walk with a stick.

• I can only walk for a few metres. Then back to bed otherwise I pass out.

• I’m in bed but I cannot lie down. Supine I cannot breathe, on my left side i get tachycardia at 120 circa, on my tummy i get pressure on my chest and all my abdomen is still in pain after the horrible reaction to Amoxicillin last month.

• The only way to rest my body is on my right side, but I cannot be fully horizontal. I have a pile of cushions to raise my upper body up.

• I still can’t sleep. Still drowning every single night.

• I can’t sit on a chair or an armchair. I pass out as well.

• My body keeps moving in a subtle trembling. It never stops. It feels I'm on a constant journey by train.

• Any type of clothes, even the loose ones, feel too heavy around my body...

Medical exams show that I'm fine.

Blood test just shows inflammation, lack of vitamin D, lack of folic acid.

From the way I feel, it seems the vagus nerve is affected... Why doctors look at me as if I am crazy when I mention the vagus nerve?

It’s the end of November, I’m still unwell:

• Everything as previous month

• I’m also losing my hair…in chunks. When i touch my hair a handful of hair fills my palm. When I brush it, it's even more.

• I have cystitis

• Skin rashes on forearms, face and behind knees

• Random and acute pains on both sides of my navel

• I still can’t sleep

• Anosmia (Lack of sense of smell) turns into Parosmia (Distorted sense of smell)… It’s a nightmare. I can’t even eat now. Smell of burning petrol all around me. I don’t even recognise the smell of my body. I smell bad, seriously bad. Oranges, lemons, apples, peppers, meat, fish, everything everything is awfully gross. Nausea all the time.

It’s the end of December, I’m still unwell

• I’m starting little by little to do some restorative yoga

• I’m walking little by little more, I'm forcing myself to gain some strengths. I still cannot walk more than 5/10 minutes (at a slow pace anyway) otherwise I pass out.

• I feel my body boiling. It’s 2° Celsius outside and I can stay in T-shirt on the balcony.

• My hair is reduced to 50%

• I still can’t lie down properly, my left side is so painful and when on it, it still triggers higher heart rate

• Parosmia keeps killing me. Even taking a walk around the building becomes a nightmare. Cigarettes, coffee, cars, restaurants, all smells incredibly bad. I cannot describe the smell because it doesn’t really exist on this planet, or at least I never smelled anything like that before. The number of things I can eat is minimal. Avocado, olives, lettuce, feta cheese, cakes. In general anything marinated in salt or sugary is ok. The rest is a banned list for me. I can't even take care of my nutrition in this moment.

It’s almost the end of January, I feel I'm improving but I'm still not ok

• Parosmia is still here

• Chest paint on the left is still here

• Right Kidney pain

• UTI

• That feeling of shaking while being on a continuous journey by train is still here

• I finally have some full nights of 8 hours sleep, it's a miracle. I yawn again. Yawning, something I've not done since August, I realise. Isn't this connected to the vagus nerve?

• Dehydration continues, no matter how many litres of water I drink per day.

• I feel so deeply exhausted.

• Another complete medical check up this month. Doctors suggested to let a few months pass after October, in order to see how my body would settle. All seems going well on the paper. They tell me to be patient. Only time is needed. I hope my body doesn't give up. I hope time won't stop.

It’s the end of February, I’m starting to feel better but I'm still not ok

• Vertigo

• Brain fog, I’m so slow, I can’t focus on anything

• Headaches are with me most of the days

• I talk slow, I can't remember words

• I can’t walk more than 20 minutes at a slow pace, but I'm happy because I can walk 10 minutes more than last month

• Parosmia is still here.

• My body shakes less

• Increased number of full sleep nights is helping me so much in getting some rest.

I still cannot paint. Paint smells so bad because of my Parosmia. I use a mask to do some small sketches. I have done many during this time. I miss painting on a bigger scale though. I miss my studio, my life.

How long will this last for? Will my body improve? I usually paint on the floor. I cannot bend now. I cannot squat down on the floor. The pains in my navel, abdomen, chest restart when kneeling down. Blood circulation in my legs doesn't flow. I get pins and needles again. I can't paint while standing up, I still have vertigo with that feeling of passing out. The world spins around and I'm so lightheaded.

In March another intolerance episode puts me down. I was going so well.

• All of sudden the drops of Vitamin D give me a very bad reaction. After about 40 minutes from the drops, my vision sees the world through a zoom lens in a loop motion of zooming in and zooming out. Black and white dots. Tongue swollen. Difficult breathing. Tachycardia. Not feeling the earth under my feet. Diarrhoea. I call my doctor who says it is unusual. Intolerance to Vitamin D is not common. Of course he suggests to stop. Sunshine is my one and only D chance. The post-intolerance exhaustion lasts about 2 weeks.

In April sunshine is my best friend. I can enjoy the full blue skies with a constant temperature of 23-25 degrees. If feels so good, but then I notice I can't stay exposed under the sun for more than 20 minutes. It's 10am. My heart rate speeds up. My legs feels heavy and I get a worrying leopard pattern on my skin... Is because of my body or because of the climate? I'm dark skinned, I never get sunburns. I then think of exposing my body everyday only between 8am and 9am in the morning. It works better. After 1 week the left pain on my chest decreases.

• 30 mins of daily sun exposure

• I start rehabilitation and physiotherapy

• Parosmia is still here but at least some tastes and smells are coming back to normal, I can eat fish again, I can eat more vegetables. My favorite peppers though are still out of the list, together with apples, oranges, onions, garlic, wholemeal bread, seeds, walnuts, hazelnuts, honey, yogurt, celery, basil, parsley, pasta, pizza. Cakes, unfortunately are the only ones that keep being on the "safe smell" food to eat.

• I start to focus more but by 8pm it feels like 3am.

• I'm still slow in general. I can only do 1 thing per day compared to my usual 8/10.

• My body still shakes internally

• Still random pains here and there, but manageable compared to the previous months.

The need of getting back to my artistic world is truly strong now. I still can't physically paint though. I go through my diary, through my creative notes... maybe there is something physically not demanding I can make in this moment? I find my sketches about the idea of making my watercolours on silk scarves... I start to see the light at the end of the tunnel. I see it as a possible thing. It's a thought that fills me with joy.

May, June, July, August are all similar to April. In general I've noticed that the improvement is not continuous, but something good can happen in the body one month and then the situation stays like that for a few other months, then another improvement will happen after 6 months and so on...

• I can walk up to 40 minutes now, still at a slow pace. Running is still a dream. Physiotherapy and Rehabilitation are helping a lot (30 mins - 4 days per week)

• I still cannot walk around the streets or enter in restaurants, the distorted smells are still powerful and disgusting.

• I have a short break to the seaside in Puglia at the end of June for my birthday. The physical and mental healing power of the sea is irreplaceable. Moreover this short trip is a symbolic celebration of life after all has happened.

September. I come back to London.

The passage from Italy to England after 1 entire year is not easy. I feel like a ghost returned to her life. I go around my home, my studio, I see where I left all of sudden my life. Seeing the artworks I was painting one year ago, seeing all the notes I left abandoned... brushes left in a water that has evaporated... paint tubes left at the reach of rays of sun now completely dry... my desk looks like somebody has left 5 minutes ago... yet it is 1 year ago. There is a sense of death and life as I go around. A storm of thoughts and feeling pervades me. Grateful that I'm stil on this planet and able to return to this world. Grateful to be able to resume my art from where I left it. Sad because I know that my body is not able to handle what I was able to do before. Overwhelmed because I know I have to go through everything and rethink my life.

I still have Parosmia that keeps me away from having a normal social life. I still have difficulties in sitting, standing up and moving around. Something has deeply changed in my legs. I also feel a radical change in my abdomen, a constant discomfort.

I'm aware that also psychologically I'm knocked out. My body has been fighting for life non stop for a whole year... it's now time for my mental wellbeing.

A summary of things I have taken and done during all these months:

• Anti-inflammatory food (from Aug to Nov, then Parosmia kicked in)

• Triphala every night (from Sept for 1 year, every night)

• Reflexology (from March, 1 every 2 weeks)

• Lymphatic Drainage Massages (self massage every day from Feb, plus professional every week)

• Ayurveda self Abhyanga (from Nov onwards)

• Vitamin C (from Aug onwards)

• Live cultures - liquid probiotics (in cycles of 20 days per month from Sept to Feb and every 2 months afterwards)

• Folic Acid (from Oct to Dec)

• Vitamin D (from November, then stopped in March due to intolerance)

• Rehabilitation and Physiotherapy (from April to Aug)

A vision of myself?

I made this painting in 2010... Out of the blue, I had this vision. Isn't strange that this picture can show exactly how I have been feeling during my long Covid? Drowning... in my sleepless nights. I wonder if artists are able to perceive ahead of time events of their life or the world's; channeling their perception through images they imagine and make...

UPDATE - August 2023.

• After getting a second covid in October 2023 my getting better has decreased and has flair up my long covid symptoms

• It took me another 6 months to recover

• I still have parosmia: now still on garlic, onion, peppers, mint, basil, bread and my own smell

• My muscles still feel weaker and sore

• My gut is upside down

• I've restarted AYURVEDA cleansing and I'm pretty much eating just according to the Ayurveda anti-inflammation diet

• Being intolerant to any synthetic Vitamin D, I can only take it by exposing myself to sunshine

• In general I've noticed that my body feels re-energised when there is sun.

• I have re-spent time away from London in these months and I'll continue to do so. As I previously said, your gut knows how to make it listen to it when your body is in danger.

  
  

UPDATE - August 2024.

• After 3 years, I still have parosmia. It has improved, but there a few elements, like onion, garlic, peppers, basil and my own smell that are distorted.

• My gut is still very sensitive and flares up with sharp sensations randomly

• I often get muscle soreness and strong dehydration even if I drink 2 litres of water per day

• What I've been doing to alleviate: - getting more sunshine (in early morning) - ayurveda nutrition - yoga breathing & meditation - massages - take short breaks more often - not going back to the active life I had up to 2019, slowing down and not be too responsive to people. I still miss who I was.