Jackie Baxter’s Story
Long Covid
“I didn’t understand what it was like to sit still because I don’t think I’d ever done it in my life before.”
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Build up of stress over a long period of time - working too many hours, pushing myself physically too much, taking on the world's problems and not having any balance in my life.
Being a perfectionist & a people pleaser as well as an overthinker.
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Anxiety - which it turns out I had before but masked it well.
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Relearning to Breathe
Yoga Nidra and Gentle Yoga
Cold Water Swimming
Letting Go of Work
Listening to My Body
Career Break
Embracing Imperfection
Safe and Sound Protocol (SSP)
Journaling
Therapy
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3 years 3 months
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Life Before COVID
Lived an active, stress-filled life with a focus on physical fitness and a high-pressure job in education.
Had a perfectionist and people-pleasing personality, leading to constant stress.
Onset of COVID-19
Experienced a severe case of COVID-19 in March 2020, initially unaware it was COVID.
Recovery seemed possible after a couple of months, but at the 3.5-month mark, long COVID symptoms emerged.
Struggling with Long COVID
Suffered from severe fatigue, breathing difficulties, heart issues, and various other symptoms like COVID toes and chest pain.
Symptoms were part of Dysautonomia, a condition unfamiliar to most before COVID.
Managing Work and Health
Attempted to continue working from home for 18 months despite worsening symptoms.
Eventually went on sick leave, which allowed more focus on recovery.
Searching for Solutions
Felt isolated and lost when initial recovery attempts failed.
Started the Long Covid Podcast to connect with others and explore recovery stories, which helped understand and manage the condition.
Finding Community
Joined support groups, which provided validation and understanding of symptoms.
Later unfollowed some groups to avoid constant exposure to others’ pain, helping to maintain a positive outlook.
Acceptance and Moving Forward
Struggled with mental health issues like anxiety and trauma.
Embraced acceptance as a way to acknowledge the present without resigning to permanent illness.
Finding New Joys
Focused on what was possible rather than limitations, engaging in new hobbies like cold water swimming, gardening, and participating in online communities.
Realising Recovery
Gradually recognized recovery, marked by a significant realization during a podcast interview.
Took time to adjust and explore life as a healthy person again, balancing work and personal life.
A New Perspective on Health
Sees recovery as an upgrade, with a newfound respect for health and balance.
Emphasizes the importance of boundaries, rest, and living a balanced life for long-term well-being.
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Long Covid Breathing - breathing courses & workshops suitable for people with Long Covid & MECFS (including social links & youtube channel)
Jackie's interview with Raelan Agle
Life Before COVID
Before I was ill, I was living a very busy, active life. My health wasn’t a consideration. I was in the fortunate position of never really having been properly ill in my entire life. I would have considered myself completely healthy. I was very fit, doing a lot of physical exercise. On top of that, I was doing what turned out to be a very stressful job. I wouldn’t have maybe thought that at the time. I was doing a lot of commuting, working in education, which can be a very stressful environment. The stress was also partly because of my personality; I turned out to be a complete perfectionist and a people pleaser. I would always say yes to everything and never turn things down.
The combination of all of that meant that I was living under a lot of stress: physical, cognitive, and emotional. I didn’t understand what it was like to sit still because I don’t think I’d ever done it in my life before.
“There was a point where my partner called the paramedics. They confirmed it was COVID, which I hadn’t realised until then.”
The Onset of COVID-19
When COVID-19 hit, I think a lot of people with long COVID say their initial illness was mild, and things got progressively worse as long COVID kicked in. My initial illness was not mild. There was a point where my partner called the paramedics. They confirmed it was COVID, which I hadn’t realised until then. I didn’t think it was likely because, in early March 2020, there weren’t that many reported cases around in Scotland.
I wasn’t severely ill enough to be hospitalised. In hindsight, maybe I should have been, but there were so many others more sick at the time. The first month was pretty rough. I didn’t get out of bed much, except for one or two times when I did, pushed too much and put myself straight back there. Over the few weeks after, things improved a little bit. And over the next couple of months, I saw what I thought was dramatic improvement. I'd been given some advice to keep doing more – so I was back exercising, pushing myself. So I thought, well, this has been awful, but that’s the end of that. We can move on.
But that didn’t quite go to plan. Around the three-and-a-half-month mark, what I would now describe as long COVID really hit. I pretty much rode that rollercoaster for the best part of three years.
“I’d been tired, of course, but this was the kind of fatigue where you can’t lift your head off the pillow.”
Struggling with Long COVID
Fatigue was a major symptom for me, something I had never experienced before. I’d been tired, of course, but this was the kind of fatigue where you can’t lift your head off the pillow. Breathing difficulties were a big thing; I struggled to breathe a lot of the time. My heart rate would shoot up, and I had palpitations. I remember a terrifying moment when I got up to go to the bathroom, and it took me half an hour to get my heart rate semi-stable.
There were other symptoms, too, like weird COVID toes, intermittent nausea, bad circulation, post-exertional malaise, regular crushing chest pain and sleep problems. These all fell under the umbrella of Dysautonomia, something I, or probably most anybody else, hadn’t come across before COVID.
Normally, a summer holiday would see me putting all my stuff in the car and going hiking. But I wasn’t able to do that. I saw the summer holiday stretching out in front of me and thought, ‘Oh, my goodness, what am I going to do?’ I was dreading it.
“My personality didn’t help; I thought, I’ll push through, I’ll exercise, I’ll push through more. And when that didn’t work, I did it more.”
Managing Work and Health
Initially, I was still working from home. The education system was struggling to adapt to online working, so my workload was thankfully light. In hindsight, I shouldn’t have attempted to work, but I kidded myself into thinking I was getting better. This went on for a year before I realised I was getting worse. My personality didn’t help; I thought, I’ll push through, I’ll exercise, I’ll push through more. And when that didn’t work, I did it more.
By August-September 2021, I had been dealing with long COVID for 18 months. I ended up going on sick leave, having attempted to work up until that point. I was lucky I'd been allowed to work from home in a flexible way up until then, but that was no longer an option
“During the lockdowns, everybody had been missing out on life, but as we started coming out of lockdowns, I felt even more isolated.”
Searching for Solutions
I felt lost, everything I had tried was not working, and I didn’t know what I was doing. There was an overwhelming feeling of isolation as well. By this point, most people were back at work, socialising, doing normal things. During the lockdowns, everybody had been missing out on life, but as we started coming out of lockdowns, I felt even more isolated.
I thought if I was feeling like this, others suffering would feel the same. So I decided to pull together some stories to help people feel connected and less alone. This effort exploded into the Long Covid Podcast; where I spoke to people worldwide, medical experts in Long COVID, researchers, and people sharing their lived experiences, including recovery stories. It made me feel useful; it was a lifeline, helping me understand what was going on and what I could do about it. And made me start to believe that recovery might be possible.
Finding Community
During this time, I joined some support groups. Initially, it sounded depressing because everyone was ill. But it was a community where people understood, and all these weird symptoms I was experiencing weren’t just me. This led to educating myself about my condition, more of which came through my podcast. It was validating to join the support group and find a community with similar experiences.
However, as I started to find some things that helped and see some improvement, I realised that I needed to unfollow some of the support groups, as all I was seeing was other people's pain. I understood that people needed a space for that, but seeing it constantly was negatively impacting me. Unfollowing them meant I could dip in and search when I wanted to, but I wasn't getting it in my face the whole time.
““don’t let what you can’t do prevent you from doing what you can,” became a mantra”
Acceptance and Moving Forward
As things started to improve physically, I uncovered other mental health issues, like health anxiety and trauma from my experience. Understanding this was big. I was also feeling despressed and feeling really worthless. There were times where I chose to prioritise mental health over physical health - doing something that might worsen my condition because getting outside was so important, rather than staying at home alone and resting.
Acceptance was crucial. Initially, I resisted the idea of accepting my condition, thinking it meant resigning myself to being ill forever. But over time, I realised acceptance meant acknowledging the present moment without fighting it. It wasn’t forever, just for now.
Finding New Joys
Focusing on what I could do, rather than what I couldn’t, was helpful. Dr. Boon Lim’s advice, “don’t let what you can’t do prevent you from doing what you can,” became a mantra. My partner and I found new activities like cold water swimming and music. I joined an online Lord of the Rings read-aloud group, which became a weekly highlight. Gardening also became a soothing, manageable activity, one which I still enjoy today. Digging up my potatoes last week brought me so much joy!
“I went through a readjustment phase, reminding myself that I can do things again. Although I was really tempted to dive straight into doing All The Things”
Realising Recovery
Realising I was recovered came gradually. I had a “I'm not really sick any more, but I'm not quite fully recovered” realisation and I moved into this space for about a month. It gave me permission to push boundaries I was scared to push before, and start to move forward.
I was interviewed by Lorrie Rivers for her Holistic Healing Summit, and during the conversation, I realised I no longer considered myself ill. It was a woohoo moment, and it was so cool that it was caught on video! I went through to see my partner afterwards and he said “I know” - he'd realised it before me and was just waiting for me to notice. He said that my brain had finally caught up with my body’s recovery.
After that, I went through a readjustment phase, reminding myself that I can do things again. Although I was really tempted to dive straight into doing All The Things, I took the summer to reassess and reprioritise. It was exciting to be able to act like a healthy person, including getting my fitness back gradually, pushing myself and exploring my new body.
I now work as a breathing instructor – I love the work that I do. Connecting and working with people who are still on their recovery journey and seeing them learn and grow is the best work I've ever done.
I'm still doing the podcast – it's something I genuinely love doing. It's so important to focus on “what we can do” as well as hearing that improvement and recovery are possible.
I have lots of plans, but I'm learning to take things one (or two) things at a time.
“ Recognising the need for boundaries and taking responsibility for my health are lessons I’ll carry forward.”
A New Perspective on Health
I see my recovery as an upgrade. I’m fundamentally the same person, but I now respect my health more. I understand the importance of rest and not taking my health for granted. I know that fitness and health are related but not the same. Recognising the need for boundaries and taking responsibility for my health are lessons I’ll carry forward. I have balance in my life now and I say no to things, which is incredibly liberating.
Ultimately, I’m recovered, but I still want to be as healthy as possible for future challenges. My journey taught me that taking care of my health is paramount and that living a balanced life is crucial for long-term well-being.
