Jackie Baxter
Hello and welcome to this episode of the long covid Podcast.
Today I'm going to explore some ideas for how to move forward in recovery, particularly that place where you feel like you're so nearly there, or you're making progress and aren't sure how to move to that next level. So this is something that I get asked about quite a lot, which is why I'm going to dive into it today.
As we know, there isn't one size fits all for recovery. It's not as simple as just do this, then just do that. In fact, I hate the word just in recovery, because I feel that it invalidates how hard the process is. But
just because something is hard and uncomfortable doesn't make it impossible. Far from it. It's a case of finding your own path, and as the many recovery stories show, although there are common themes, there are a lot of different paths, and
that's what I love so much about the work I do, both with podcast and with clients. It's not as simple as telling people what to do, because that's really boring. It's working with people to work out what each individual person's path is, what's blocking your path? What strategies can we put in place to make that journey easier to travel and to help you to ultimately get where you want or need to go?
What's a side quest, and is it useful? Where are you getting off track? Maybe you change direction and decide that your destination isn't what you originally thought it was.
I recently said something that seemed to resonate with people,
healing isn't a destination. It's a soft place to land.
And I love this because I think we can often get hyper focused on the destination,
and understandably so, getting better is what we want so desperately. However, if we're able to embrace the journey making each day, each situation, each activity, a soft place to land, being gentle with ourselves, working on that self compassion, treating ourselves with care often for the first time ever, and it can be really helpful and less awful. We focus more on the journey and less on the destination. It puts less pressure on our nervous system, and we're all about that.
I think also being okay with the uncertainty, embracing it even. And as someone who is a recovering control freak, I do understand how very hard that is to do, but it is also very rewarding too, as is immortalized in one of my least favorite Disney songs, let it go.
So what I'm going to do in this episode is explore my own experience. What I did that helped me to move out of illness and into wellness.
I'm going to suggest some strategies that I've learned or honed, since that might be helpful,
and I'm also going to share some insight that I've gained from others.
Maybe you have thoughts too. What's helped you move through phases of your own illness? Have you recovered? What did your transitions look like? Maybe something I've said gave you an aha moment that helped you to move forward in your own recovery. Please let me know. I always love to hear from people.
So the liminal space
so loosely I see my recovery in three main parts, which loosely equates to the three years I spent ill. I'm not suggesting that the timeline will be the same for you, but the three phases may resonate. Some people move through them at very different speeds.
For me, phase one, denial, pushing through crashing, heart, pushing through more, refusing to stop or acknowledge anything was wrong, and when I did, my idea of slowing down was, in hindsight, pitifully inadequate. So phase one was all about getting worse.
Phase two, this was where I started to slow down, educating and building strategies. This was where I started learning about body, the nervous system, finding things that helped me.
I still crashed, I still over exerted, plenty of things I tried didn't work recovery. Perfection was real. Expectations were far too high, and I over committed on strategies, but I gathered tools, built strengths and regained some control. I.
Phase Three was gently building. So once I had my strategies in place, I was able to explore what I could do. I still got it wrong and crashed, but I was able to do a little more or work out how my strategies would help me to do things, even just a little bit. So this was all about building safely.
And it's this kind of third phase that I'm talking about here.
So towards the end of phase three, where I was able to do a lot more. I was successfully listening to my body a lot more. I was getting it right more often. I was understanding my needs, and I was able to actually provide what I needed. I felt like I was almost there.
How did I dare think about moving across the finish line? How could I dare to hope?
One of the things I did here was Susy Bolt's Fern program. Now there are a lot of these programs out there. Many are helpful, especially if done at the right time, and that's different for everyone. I should also be transparent and say that I now teach some of the brush sessions for the fern program, although I didn't at the time, of course.
So one of the things that was holding me back was that fear of reinfection. It felt like the more better I got, the more terrified I got, because I had more to lose. Now I'm not going to get stuck into that topic specifically today, because what is holding each of us back is going to be really different. What I will do is link in the show notes, the episode about this that I recorded with Susy around that time, and she gave me a lot to think about.
So I'll pop that into the show notes,
The Fern program, along with a lot of other things I was doing at the time, things I'd been doing consistently over time, continuing to consistently do those things that my body liked helped me to have more confidence and trust in my body. I continued to send my body those cues of safety. I proved to myself time and time again that I was listening to my body, that I treated it with respect and care where I really hadn't done before, I reinforced that hope and belief that I was getting there, that maybe the end of the tunnel was in sight, rather than just an asshole with a torch.
Many recovered people who I've spoken to or interviewed have found that using one or more of these recovery programs to help them move out of illness have been very helpful.
I'm sure all sorts of people find them helpful, or indeed unhelpful, at different phases of recovery, but the majority of people I've heard from say that it was something that helped them a lot towards the end of recovery, with that, moving out, letting go, starting to reintegrate with life, that sort of thing.
So it was around about May 2023, and I moved into that liminal space of I'm not sick anymore, but I'm not quite well either, and this space allowed me to really think about things in a more quote, unquote, normal person way.
It gave me permission to stretch a little, to try things that I wouldn't have felt confident doing when I was in the illness space, because I was still ill, but in this new space of not ill, I could explore more gently and without pressure or expectations, I was able to ask myself, Is this normal when I felt a little bit tired after having a slightly longer walk. Yeah, that is normal. Putting myself in bed for two weeks. That wouldn't be normal, but that wasn't happening.
I felt my legs a little bit tired. I felt a little bit sleepier, totally normal. So what is normal?
And I think because I had been living in this totally abnormal space for so long which I had normalized, I had kind of forgotten what normal was. So is this normal was something I asked myself a lot.
I was in this liminal space for around three weeks before I came to the realization, whilst I was actually being interviewed by somebody else, that I was recovered. The almost there space had given me the confidence to build and treat myself that little bit more normally, and I'd pass the test my body had reacted normally, and I was able to say with confidence that I was fully recovered. And I was able to step into that space and stand up and say, yes, here I am now.
This didn't mean that I instantly could do all of the things that I could before I got sick.
It meant that my body was healed, my nervous system was regulated and responded normally or appropriately, I was able to start rebuilding, and I spent that summer increasing my fitness, working out who I was now, because I was a new person. I was jackster 2.0 I'd had an upgrade
For me, that recovery process was quite a slow burn with a sort of, oh, I'm here moment at the end, my partner described it as my brain had to catch up with my body. I was recovered, but I didn't quite trust myself until I did.
Others have described it differently, and I think it's a very personal thing, but it's always a question I ask in each recovery story that I interview on the podcast.
So that was my experience. Let's talk about signs of recovery. How about you?
How do you know that you're making progress? What are those signs of recovery or progress? It could be all sorts of things. Maybe some of these resonate with you.
You notice birdsong again. You laugh without crashing.
You make plans and keep them.
You check in with your breath and your nervous system, and you realize that you're breathing functionally without having to change anything.
Maybe you notice that you can get up in the mornings a little earlier. Maybe you just start to feel a little bit brighter.
Maybe you have an experience that would have dysregulated you, but you were able to breathe through it.
Maybe you were able to eat something that you couldn't before, or do an activity that seemed impossible.
So what are your little markers? Maybe they're tiny things. Maybe they're events. Notice them. Write them down. One of the best tips I give people is the My Body Works list every time you do something and your body responds, well, write it down.
That list helps to build confidence in yourself, and it also helps if you're having a day when things don't feel so good, you can read back over that list and say, Okay, I'm not feeling so great today, but look all the things that I did and I felt good.
We have this negativity bias. We tend to remember negative rather than positive things. The My Body Works list reinforces when things do work and they build up over time.
Another thing that is super useful is celebrating those little wins, however small and insignificant they may seem to others or to previous you, they are huge to current you. How will you celebrate them? Make sure that you do celebrate them.
Bringing play into activities is also something that is so helpful. When we're in that play state, we feel safer. So doing an activity in a playful way is going to help you to feel safer, stay more regulated and feel fewer side effects that are negative. It's kind of amazing.
I started to allow myself to be more childish without judgment. I've always been childish, but I've always felt judged for it, and judged myself for it. So I started to allow myself to do this and stop judging myself. My partner jokes that I grew down rather than growing up, and it's kind of true. I embrace my silliness now. It's one of the things I love most about myself, and what I love most about my relationship with him is that we can be really silly and laugh together,
Reclaiming identity.
So when we become unwell with something like long covid or MECFS, our whole identity shifts from a quote, unquote, normal, healthy person or what we thought was normal and healthy, because we'd never known anything else to a sick person, someone who can't do things, someone who is isolated, someone who's every moment is a struggle, because these illnesses take over every part of ourselves, and that is incredibly difficult. Isolating And painful.
However, we also normalize this. We see ourselves as ill people. We only talk to other ill people because they're the only one who gets it. We do ill people things, which is generally not doing things. We wear ill people clothes. We drink, ill person drinks. We eat ill person food, you get the picture, and this can help us. It can make us feel comfortable. We find our tribe, and this huge value in that community, connection, understanding that we get from others we can relate to and who just get us.
But it can also be unhelpful, I think, particularly as we are trying to move out of this illness. So as we've seen a lot of improvement and are moving through
Once I'd found these strategies that helped, I'd seen improvement, I'd been able to do more. I actually found that things like muting support groups was helpful. I could still dip in and out if I needed or wanted to. But my Facebook feed wasn't constantly showing me negative and distressing content. It was showing me pandas. It was showing me silly things. I could choose what I saw on social media, I could choose not to read the news because it was out of my control and it would only distress me.
So I could make these choices. What am I going to feed myself?
I also started to think about who I was becoming, who do I want to be, which parts of Jackster, 1.0 do I want to keep and what am I letting go of? What didn't serve me? What new things am I now?
So for me, realizing that I didn't want to return to my job was a turning point. I remember saying to my therapist one week, I don't want to go back to that job, which was one of the clearest insights I'd had at ages. And then from that point, I was able to start thinking about what I did want to do, and I started looking into how I might go about that. It was exciting, and I wasn't quite ready to do it yet, but I was able to start dreaming, and that really helped me.
I think this metaphor of being on a journey really helped me, too.
I'm an adventurer. I love a journey, a work in progress, a journey I hadn't chosen to be on, but had ended up there nonetheless. So my choice was to keep journeying on my path and see where I ended up.
And I'll be totally honest, when I got ill in March 2020 I never imagined that I would be where I am now.
The journey sucked, but the destination is freaking awesome.
Coming back to identity. Don't get me wrong, I've really struggled with identity in that kind of recovery phase after recovery, who was I now? Where did I belong?
I didn't belong in the illness space because I wasn't ill anymore. I had a lot of friends who were still on their recovery journey, and on a friendship level, I didn't really relate to their experience anymore. Or maybe it's truer to say that they didn't relate to mine.
I'd moved out of that space, but I didn't feel like I yet belonged with people who hadn't been through a relatable experience, because they didn't really understand where I was coming from. They didn't get why I smiled at trees, was grateful for sore legs and took immense joy in seemingly insignificant things. I felt like the whole world was brighter than before, a bit like that bit at the end of the Wizard of Oz, where everything goes from black and white to color. That was kind of what it felt like for me, I had to keep pinching myself.
It did become easier over time, and I found my therapist so incredibly valuable during this transition.
Michelle Irving's take on the physical versus emotional journeys, which we explore in Episode 100 was also really enlightening. I realized that physically I was good, but emotionally I was all at sea.
I also enjoyed conversations with others who had recovered because they got my experience. So it was refinding my tribe, building my new identity, growing into my new skin. It was both exciting and terrifying, but it did become easier over time, and I think one of the most useful things that I did was give myself space and time to do that I didn't rush.
It, I just allowed it to kind of happen organically. And looking back, that is one of the greatest gifts that I gave myself was time.
In one of the episodes I recorded with Dan Neuffer, we discussed progress and recovery, moving through phases, and he talked about the 80% place where people can often get stuck, and he said that that is where we need to start challenging ourselves, which I thought was interesting. I like the idea of gently challenging, and that's going to look different for everybody.
A recent interview Raylan Agle did with Dr Cathleen King also referenced this latter stage of recovery, and she said that the reason that people often get stuck here is that they continue trying to fix things and find all the answers rather than starting to re engage with life. And I love that once we are able safely, starting to re engage with life is so important, even if it's in really tiny ways.
And I think looking back, I did do those things in my own way, but I gently demonstrated to my body that it was safe. Was safe to do things. It was safe to be was safe to spend time with people. It was safe to move.
That created confidence, and confidence led to trust. I now trust my body. I just know.
So to finish, maybe you can think of one example of your body working.
Think of one thing that you can do now that you couldn't a few months ago,
One dream that you're going to work towards.
Maybe you could even visualize yourself doing that. Prepare the way. Visualization is incredible.
What one action can you do now that will move you onwards in your recovery journey?
What one thing that helps can you commit to doing consistently,
And what one thing can you do right now to feel a little bit safer?
Recovery stories often feel dramatic. They might seem impossible. They might seem like big things happened fast or like magic, but these recoveries are built on little things, small, consistent practices. Each tiny step adds up to bigger leaps and shifts. Every cue of safety, every step along the path takes you closer to that destination.
This journey, it on is ongoing.
You're a sunrise in motion,
A hush before Birdsong, when the world is just beginning to wake up,
A tide that no longer pulls you under, but carries you forward,
Air that tastes like possibility,
Roots stretching deeper, not for survival, but for belonging,
The quiet bloom of something once dormant,
The echo of your voice finding its way back.
