In the months since I started this blog, I have been blessed to connect with some of the most genuine and kind souls this planet has to offer. Although I wish we would have all met under better circumstances, the courage, positivity, hope and love shared over the internet have been pivotal to my long covid recovery journey. I have learnt so much from what others have shared and I honestly believe I would not be this far in my recovery if I had not joined these online communities. Thank you to anyone who has been part of that.
With this in mind, I wanted to post a piece written by a member of this community who has provided a detailed account of their long covid rehab experiences, which I am sure many of you will find incredibly useful (I did!).
Her name is Chantal and this is her username on Instagram if anyone wishes to reach out to her: @chvanderweide
Jemma x
Covid Therapy - Part 1
By Chantal
Hi guys! A few months ago I started a special covid rehab programme and I thought I would share some insight and symptom-managing exercises 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 specialised physiotherapist, and sometimes also an occupational therapist or a psychologist.
I got Covid in February 2023. In the first months after my infection, I was able to work part-time and slowly reintegrate workouts and activities. However, in July 2023 I had a severe flare up which set me back enormously and that is when I started my covid therapy. Symptom wise I struggle mainly on the cognitive side. I have a hard time processing stimuli (especially stimuli from TV/computer screens, lights and background noises). I also suffer from heart palpitations, headaches, brain fog, tinnitus and insomnia. In the first few weeks after my flare-up in July, I could not tolerate the TV for more than 20 minutes per day without getting a temperature rise and feeling pressure on my chest. Besides that, my stamina is very low and if I walk or do too much I get PEM (post-exertional malaise).
The key theme in my programme has been: regulation. Long Covid has nothing to do with low stamina, but everything with the fact that our bodies are not able to regulate anymore. So even a small activity like getting dressed can activate your body as if you are running a marathon without knowing how to calm down. To really recover I needed to learn what my triggers are and what type of rest I needed to calm down again. Over the past months, I have been working with both a physio and an occupational therapist. With physiotherapy, we focus on reintegrating movement and rebuilding my strength (but she also specialises in relaxation exercises and breath-work). The occupational therapist helps me to perform my daily activities in a manner that does not cause any covid flare-ups and to reintegrate activities which are cognitively hard for me. Such as doing groceries or driving my car.
In these 2 blog posts, I want to take you through the 4 pillars of my recovery.
What are your symptoms and what are your triggers? - first you need to get clear on where your base level is and what you are struggling with so that you can find solutions.
What type of rest do you need? There is physical rest, cognitive rest and nothing-rest and they are all needed. Before my programme, I could be sitting down all day reading a book and still feel horrible at the end of the day, which frustrated me so much. I was not doing anything, why am I not getting better?
How can we safely reintroduce either physical exercise or cognitive stimuli?
Medication (and other helpful things) - coincidentally I learned of several medications and other medical helpful things which helped me so much.
1) What are your triggers?
For the first few weeks I had to write down everything I did within a window of 30 minutes and grade on a scale from 0 (none) - 10 how tired the activity had made me, how (over)stimulated I felt and what other symptoms I noticed. In the beginning, this was hard for me because I was so out of tune with my body that I hardly even knew what I felt - let alone scale the sensation. I was given the Deep sitting exercise* (see below) to become in tune with my body and it also helps to calm my brain down so that it can process stimuli.
Example timetable:
Time | Task | Tiredness | Overstimulated | Other |
08.00 - 08.30 | Waking up | 2 | 1 | - |
08.30 - 09.00 | Showering + getting dressed | 6 | 2 | Chest Pain, out of breath |
09.00-10.00 | Scrolling on Instagram | 5 | 6 | Headache, palpitations, blurry vision |
10.00-10.30 | Breakfast | 6 | 6 | Nauseous |
10.30-11.30 | Housework | 7 | 6 | Out of breath, fever, palpitations |
An example like this showed me that my exhaustion so soon in the day was not ‘long covid general fatigue’ but that it was triggered by the shower I took. It also showed me that being on my phone triggered palpitations and a headache and that I was not nauseous all day but that it was directly connected to when I ate. Using these insights we came up with solutions. In pillar 2 I will explain the system we used to come up with the solutions but just to give some specific examples:
Showering: for the last few months I have been sitting down during my showers and I leave the window or door open so that the room does not get too warm and humid. The harder it is for me to breathe, the worse my symptoms get. I also take a 5-minute rest in between showering and getting dressed regardless of how energised or tired I feel.
Phone: not being able to be active (and being a phone-addicted millennial) my phone had become a means to pass time and a means to ease my boredom even though I knew that for me it hindered my recovery. It helped me that during my weekly check-ins, I had to show my covid counsellors my schedule and felt too embarrassed to show them 60-minute time blocks for ‘Instagram’ and ‘useless YouTube scrolling’. The people pleaser in me wanted to make them proud so I actively started to look into non-screen restful activities. We also incorporated exercises that would put me back into my body, like body scans or breathing exercises.
Nausea: we incorporated an eating exercise**
After a few months of making small adjustments, I can say that showering is no longer ‘the activity of the day’ but something I can do without thinking much about. I have been able to build up my screentime tolerance from 1 x 20 minutes to 2 x 40. However, when I started to feel better I also got cocky. I started believing that I didn't need to think so thoroughly about every activity anymore and that I didn’t need to take those 5 minutes of rest or do my breathing exercises anymore because my fatigue was scoring a gorgeous 3 all day long. Boy…. was I wrong!
First of all, at times the adaptations and the small resting pauses may not seem needed for the next activity or the day ahead. It is however needed to keep you going at the same speed the entire week instead of booming on Monday but not being able to get out of bed on Saturday. Doing the deep sitting exercise helps you to stay attuned to what you are feeling if you need a rest and what type of rest is needed.
Secondly, these small adjustments and breaks also help your brain to process the stimuli as you go through your day instead of when you go to bed. I realised this after I developed insomnia around September, which came as a surprise. I was not exhausted at all, my symptoms were at a base level and yet I was completely wired and none of my relaxation exercises were working. Lesson learned: don’t get overconfident but just stick to your programme.
2) What type of rest do you need?
If we look at the example schedule above, we can see that I move from activity to activity without any rebalancing. I shower and then immediately get dressed, then I am on my phone regardless of the fact that I am starting to feel worse and then I go straight into an hour of housework pushing myself further and further into exhaustion. As I said before, I could spend an entire day reading a book on my couch and still feel terrible.
Since then I have learned that there are three types of rest (physical rest, mental rest and nothing rest) and they are all essential throughout your day. The key to recovery is to keep asking yourself the question: what type of rest do I need right now?
Physical rest is when you are using little or no physical energy. This can be the case when you sit down on the couch reading a book. One thing that helps, is something all of you already know: breaking tasks into small steps (pacing) and in between steps asking yourself what type of rest you need. For instance, doing a few dishes and checking in if you have the energy for the rest of the dishes. Another thing that helps is to take away the physical strain component, like showering sitting down, sitting on a bench halfway through your daily walk or peeling the potatoes on the couch. What was important for me was to give myself the complete freedom to go about my day in a new way, regardless of how silly it might feel.
Mental rest is when you are doing things that do not require you to think (like taking a walk, knitting, gardening, puzzling) or doing things that help you ‘drop into your body’ like stretching, breath-work, and yoga. So after activities with high stimuli (being in a busy café, sitting in traffic or being on my phone), I try to take some deep breaths, look for a quiet corner in the library or do a mindful walking exercise***. I have noticed that my BPM would drop after any of these activities and my palpitations, brain fog and anxiety would ease a little.
And thirdly the nothing-rest is where both your body and mind can recharge, for instance when you lay down in a dark room or when you stare out of the window. My occupational therapist even suggested putting your hands over your eyes for 30 seconds as a way to alleviate your brain from stimuli. The nothing-rests were the hardest for me. As a millennial, my brain has become addicted to constantly being stimulated - sitting still and staring out of a window felt useless and boring. But I have noticed that on the days I do not take these nothing-brakes, I am more anxious, I cannot handle sounds or lights too well and I have trouble sleeping through the night.
So I am forcing myself to take a few minutes every hour to sit and stare and do nothing. Forcing myself to have small moments of being bored. To not grab my phone while waiting on the bus, to lie down for 5 minutes every hour when we have guests for a game night. Because the goal is not to rest when you are tired but to prevent you from going into exhaustion. As my physiotherapist said: "You are a person who loves to give to others. By slowing down you are now listening to what you have to give".
Exercises part 1
Deep Sitting Exercise
To do this exercise you need to sit down on a couch or chair, take a few deep breaths and become aware of where your body is touching the couch and where your clothes move when you breathe. Then slip your left hand underneath your left sitting bone and start to feel if this feels different: is there a height difference? Are you sitting slanted? After a few minutes take your hand away and feel again if something feels different. Then repeat on the other side. Because I tend to rush through this and on a bad day find it difficult to remember the steps, my occupational therapist made a voice note in which she talked me through the exercise so that I only have to follow her lead and this helps!
Eating Exercise
Your body follows where your mind is, so if you are up in your brain, chances are that not only your breathing will be high in your throat but also your digestion will force itself up resulting in heartburn and an overall feeling of nausea. The key is to ground yourself during your meals. Make sure that there are no distractions such as a TV, radio or a mobile phone around. Do a deep sitting exercise before you eat and have something underneath your feet (like a tennis ball, ping pong ball or anything spikey) that draws your attention downwards. It can also help to rub your legs with your hands when you are done eating and wait a few minutes after you are done eating for your next activity so that your body has the time to digest. Don’t worry, you don’t have to do this every time you eat. I did this exercise mainly at dinner time and after a week or 2 my brain started to get acquainted again with ‘how should I respond in the way a regular body does when eating’.
Mindful Walking Exercise
The exercise is pretty self-explanatory - go for a walk (if you can!). For the length of the walk, you want to choose a distance which is doable every single day without having to adjust your daily activities. It is not necessary to walk every single day, but by choosing this distance you prevent a boom and bust (taking 1 long walk and then not being able to move for 4 days). The most important thing is that you walk with as little distractions as possible. So no phone, no podcast and preferably somewhere with little traffic. Try to become aware of your surroundings; can you hear birds? Or the sea? Can you hear the rain? Can you feel your hips and legs move? Can you feel how your feet roll down as you walk? Focus on your legs and feet, because this will allow your heart rate to go down as well.
I will be posting the second half of Chantal's blog post very soon!
If you would like to write a blog post for this page, please feel free to reach out to me in anyway (email: jemma.bella5@gmail.com). I would absolutely love to give you the space to share your story and experiences. Sending love! Jemma x
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