Hi friend,
Last week I traveled to Paris from London on the Eurostar to spend a couple of months at my grandma’s. I’m always amazed what a change of scenery can do for my recovery. There is something about being stuck in the same room day after day that can become so stifling. Even though I won’t be doing much while I’m here apart from spending time with family, I’ve found myself in a completely different headspace and I’m feeling a lot better than I have since my relapse a few months ago. I never did manage to piece together what happened, but have managed to let that go.
My renewed optimism is not just down to the change in location. I now have a physiotherapist who I see every couple of weeks. I had saved up a bit of money to spend on hyperbaric oxygen therapy (HBOT), which turned out not to be quite right for me. I did two sessions. The first made me feel pretty energised and the second left me feeling fatigued and increased my pots (postural orthostatic tachycardia) symptoms. I’d planned to do five to ten sessions, but my second experience put me off going back. I’d heard anecdotally from other long haulers that it either provides a significant boost immediately or does nothing. I must be in the second camp. I was pretty disappointed, feeling like I’d tried almost everything with such little success. I spent a few days feeling hopeless that I might never find something to help my recovery along until I remembered my doctor’s recommendation to try physio.
For so long I have felt like it’s too soon for physio if I have to spend much of the day lying down and am barely able to go for a short walk, let alone exercise. But I have since realised that a good physio can meet you where you are. There’s a lot of work that can be done prior to physical exercise and movement. My physio also has several chronic conditions and is able to use her lived experience to make the sessions engaging and empathise with what I’m going through. My first session left me feeling very hopeful and motivated to be working with a healthcare professional who “got it.”
One of the most challenging aspects of my long COVID journey, has been the loneliness of being on my own to navigate the day to day fluctuations of an unpredictable illness. I’m part of a long COVID clinic in London and I have an appointment every few months, but no one to turn to with questions or concerns in between. This can leave me feeling unmoored and isolated, as I’m left to guess what is safe and what a “normal” recovery should look like.
The initial physio session was very much about laying the groundwork and understanding past health issues that might have led to this prolonged illness. I have dislocated my knees several times and that could mean I have hyper-mobility, which puts me at greater risk of something like POTs. I was given an activity journal to fill out as homework, which I colour coded in green (low energy activities), yellow (moderate energy activities) and red (high energy activities). On my second session, we discussed some of the patterns. My journal looked like giant blocks of different colours alternating every few hours. I was reminded of how the nervous system gets wound up by red and yellow activities. Then I was urged to intersperse small breaks throughout the day of 10-15 minutes to stop the nervous system getting wound up at all. I’ve applied that every day for the last week and I’ve found myself having more energy and less pain, which can only be a good thing. It’s given me the confidence to start some very low intensity lying down exercise first thing in the morning. I was reminded the difference that positive experiences with health practitioners can make to my outlook to recovery.
It helps me mentally when I see progress being made, however small. In the midst of a crash or a relapse the hardest thing can be not seeing even a glimmer of light and feeling stuck in a cycle of deterioration or stagnation. I hope this progress continues and that with the help of this new physio, I continue to hit new milestones.
In between my physiotherapy sessions and rest, I’ve found solace in books, TV and podcasts. They've been a wonderful distraction. Let me share some of my recent favourites.
With love,
Naïma
What I’ve Been Enjoying Recently
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Your Face Belongs to Us by Kashmir Hill: a chilling examination of a little known startup with the most accurate facial recognition technology in the world.
Augustown by Kei Miller: a lyrical novel set in Jamaica that recounts a day that shakes an entire community.
Babel by R. F. Kuang: set in Oxford in the 1800s in a tower where students are working on translation and magic during the height of empire.
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The Retrievals: a five part podcast series about a scandal at a fertility clinic at Yale Hospital and what happens when women’s pain is not listened to
Hard Fork: my favourite podcast for learning more about what’s happening in tech from two top journalists based in San Francisco. It’s light and sometimes chilling.
So I Got to Thinking: an episode by episode podcast about Sex and the City. What are the questions, themes and does it stand up today?
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Beef: starts with a road rage accident that descends into chaos. Brilliant show with one of my fave comedians Ali Wong.
Painkiller: all about the Sackler family’s empire built on prescription painkillers. At times infuriating to watch, but Uzo Aduba is brilliant in it.
Barbie: I’m sure this film needs no introduction, but I absolutely loved Gerwig’s Barbie. It was fun, light and magical. Just what I needed to distract me for 2 hours.
I am also somehow finding a renewed sense of hope and optimism at 3.5 years, despite the past summer being really tough and setting myself back through, ya know, just trying to live... But that forced me to process a lot emotionally, and I feel a stronger resolve to begin again, with recovery as absolute priority. Hang in. 🤍
You are so right about a change of scenery. I hope Paris gives your recovery a boost 🤞🏻. Thanks for the recommendations on what you’re consuming these days. The SATC podcast sounds right up my alley 😁