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The Long Covid Collective

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Hi guys! A few weeks ago I started a special COVID rehab/revalidation programme and I thought I would share some insights and symptom managing excercizes with you, since this type of therapy is not available everywhere.

In the Netherlands you can get a referral from your GP if you still have symptoms 5+ months after your infection. They will refer you to a specialized physiotherapist, and sometimes also a occupational therapist (ergotherapeut), a psychologist etc.You only need to pay a small amount, the other portion will be covered by your insurance for 6 months.

My biggest struggles symptom wise are: fatigue, any screentime gives me headaches and palpitations and worsens my brainfog etc, showering makes me out of breath and tired, eating makes me nauseous.

Basic points:

- the first thing I learned is that my symptoms have nothing to do with my stamina. So it is not a matter of a training scedule where you up the meters or weights. Like Jemma has already written, it has to do with a disregulation of the nervous system. This means that with any activity your body responds as if you are running a marathon and that your body has trouble calming down. But each person can has his or her own specific triggers. This also means that unless you get some grip on your regulation, you will not be able to fully charge your batteries and fall risk to crashes again and again.

- the second thing I learned: (physical) rest is not (mental) rest. I thought that as long I was sitting on the couch reading a book or watching TV, I was resting. My covid therapist explained to me that both physical and cognitive activities activate your system. You need to also have moments of doing absolutely nothing but staring out the window.

- be in your body: in the past weeks I have noticed the effect of being in my body. After a meditation my tiredlevel would go from a 4 to a 2, after stretching my heartrate would drop 20 points but as soon as I started talking it would be back at 80 bpm. I got specific relaxation excercizes to do when I feel rushed and I have to do concious check ins with my body when I eat so I don't get too nauseous.

- mindset: I struggled a lot with slowing down and doing less. My therapist reframed this by saying "You are a person that loves to give to others. By slowing down you are now listening to what you have to give"

Session activities 1) getting insight on your triggers. The excersize I had to do is write down every 30 minutes: what I did, how tired I was on a scale from 0 (not) - 10 (very), pressure on my chest 0-10 and other symptoms. This gave me an amazing insight. First of all by getting more intune with my body, I noticed that screentime always triggered a headache and palpitations, after every meal I got nauseous and that showering peaked my symptoms. It is a lot of work in the beginning, however I have noticed that on the days I 'track' I am a lot more accountable and intune. 2) connective tissue massages: these are not regular massages (which can be to intense for LC recoverers) but massages/stretches done by physiotherapists focused on the muscles around your lungs. Due to the relaxation your body gets the cue to calm down and it also helps you breathe. 3) the way in which you move: after we had some insights I had to start noticing how I went about my day. I tend to be a 'LETS GO!' kind of person. Jumping to my feet, hopping out of bed. And also unknowingly tense my shoulders when I brush my teeth, I clench my jaw when I text; all of which puts extra stress on my system. By slowing down even a little bit, you help your system to not go into overload. 4) limiting my distractions: I no longer listen to music whilst cycling to something. No phone whilst watching TV, no podcast while I clean. I consciously try to limit the stimulus so that my nervous system doesn't get to worked up and it has been helping. On days that I do listen to a podcast whilst I am cleaning or cycling, I noticed how fast I am overstimulated.

Other things that helped me - noise cancelling earplugs. I use LOOP earplugs which filter sounds but not cancel everything. So I can still watch tv but it doesn't cost me as much. I use them whenever I have to go outside and they have allowed me to go see friens for short periods without becoming overstimulated. - de-humidifier. The humidity in my appartment worsend my symptoms so my partner and I invested in a dehumidifier. It makes it a lot easier to breathe for me. - cutting out caffeine and wine. Both raise my heartrate so I decided to swith to decaf and sparkling water.

- 7 min meditation from Yoga With Adriene

- showering with the door open! The fresh and cool air really lowered the energy it used to take.

- the Visible app to track my symptoms

- yin yoga

-compression socks

Final notes

I have only started this therapy a month ago, so progress is small and slow. But I feel like I have more insight on my triggers and more tools to calm down.

But most of all, for me it helped me that I have someone in my corner that does not have my 'people pleasing brain' but who values my recovery. My employer has been very flexible, but still pushes to 'try what you can'. They suggested that I took some time 3 off and then start again with working 2 hours a week. This is not an unreasonable request but my intuituion was hesitant. My covid therapist gave a very clear NO. She told me that as long as I do not learn to properly regulate it doesn't matter if I work 1 hour or 10 hours - both will drain me and hinder my recovery. She also said that I would not be expected back for another 6 weeks, and then we will see again. A decision I would not have made for myself but something which is so crucially needed. Which shows that even after all these months I still do not make decisions that are right for my body.

If you want an update in a few weeks with new excercises or insights let me know!

Jemma Bella
George McNally
Marta Luise
Jemma Bella
Jemma Bella
Aug 22, 2023

Charlotte! Thank you Thank you Thank you! This is just fantastic and I know I won’t be the only one to say, I so appreciate you sharing this. You have honestly written this brilliantly. You should think about starting your own blog!

I am so pleased you have been given this information and you were able to share it with us. You are certainly right that this type of therapy is not available in different countries. I found that in the UK there hasn’t been much information spread on ways to support recovery. But I know ever clinic and county is different.

There are different things on here that I have never heard of (and I am a serial researcher!) so this is just great and I know that others will be very appreciative of this too. Thank you again Charlotte for all of this. I wish you all the best with this programme and hope it continues to be super helpful to you and I think an update would be absolutely great. ❤️☺️

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