123 - Jackie's Reflections on 4 years since "The Beginning" & Long Covid Awareness Day

Episode 123 of the Long Covid Podcast falls on Long Covid Awareness Day, and also 4 years since I first became unwell. This is my reflections on the last 4 years - Long Covid & beyond.

I also did a video for youtube which might be of interest here

Episode 94 - my recovery story

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast. It's kind of hard to remember back to four years ago, everyone's experience of lockdowns and the following few years will be different. But I think one thing we can all agree on is that none of us really knew what was coming. 

We'd heard stories from China from Italy. But the message in the UK certainly, was that we were prepared, we were going to be fine. And that unless we were quote, unquote, vulnerable, then you didn't have anything to worry about if you got it anyway. We now know that to be untrue, but at the time, many of us believed it and carry on. That was certainly what I did. 

It feels like a different world, thinking back to life before COVID. Or before lockdowns because of course, we know now that there was plenty of COVID around, certainly in the UK before March 2020. 

Certainly, for me, it feels like looking back at a different person's life. Because life now is so very different. I would say life is better now for the most part. But I am saying that from the fortunate position of having recovered. It was an awful, awful experience. But I have come out of it stronger. But I certainly wouldn't have said that 18 months ago, or two years ago, or three, or....

I'm not sure the world is better now, though. Or maybe my eyes have been opened more to both the good and the bad. I think I'm more aware of the underdogs, or people who are in need of more support, whatever the reason is for that. 

Anyway, I'm waffling. 

I've realized over the last four years that although I'm not big on anniversaries particularly, they are times when we tend to reflect. And I think reflecting is important, both on the good and the bad. 

And so I felt that I couldn't let this moment go - this four years on from when I originally got unwell - without saying something. There are a lot of people around about this week, who have been having their four year anniversaries. And many of these people are people who haven't recovered. So I imagine that how you feel if you're in that position is probably very different to how I personally feel. But this is my story. 

So four years ago, I had done what would be my final commute to my job. I was doing my usual dashing around both with work, social life, exercise. I didn't see this coming at all. I was planning for concerts. I was doing last minute prep for exams. I was planning weekends away in the hills. 

And then everything changed. 

It was Sunday March the 15th when I first began feeling unwell, although naively I didn't think it was COVID at the time. It wasn't until several days later that I found out that it was. 

Long COVID Awareness Day is also March the 15th, ironically. There are all sorts of demonstrations and things going on around the world this week. People who are suffering who are wanting to raise awareness, asking for help and an end to suffering. And I don't blame them. People do need help and support. And that will look different for everyone. 

But I've also realized that things like anger and blame, certainly for me, aren't helpful. They are absolutely understandable. But not helpful to my nervous system. And I try to stay away from politics. I don't doubt others will feel differently. But that's what I feel personally. 

I think I always have, and certainly now it feels important to me to focus on what we can do. That recovery is possible. It will look different for everybody. My recovery story is not going to be yours. There may be a lot of similarities, but it's never going to be the same. But we can do it, and learning from and supporting each other in that is absolutely key. But that support needs to be the right sort of support. 

So recovery is possible. Improvement is possible. What can we do? That 1% is better than no percent. That 1% might lift us up to the level where we could then try something else that helps. 

Four years ago, I thought I was indestructible. I was 30. I was fit, I was healthy. Or so I thought. So who wouldn't think they were indestructible? 

I now know that I'm not. But ironically, I'm actually much more resilient now than I was four years ago. 

My life is so different now to what it was four years ago. But I do think in a good way. Long COVID has been a horrible, horrible, terrible, agonizing experience. And I don't find myself feeling glad it happened. Because it was a lot of years and a lot of suffering and a lot of things that I've missed out on. I wouldn't wish it on anybody. 

It took me over three years to recover. And then it took a lot of time adjusting to what life is like now. I still carry trauma from my experience. I always will. But at least I'm processing things in a healthier way now. 

I can't get that time back, or not have had those experiences. I now realize that wishing otherwise is pointless. 

What I can say is that I'm happy for what has come out the other side, the me that has emerged from this experience. I can make the best of what I was given and what I know have. And to make the most of that now, I suppose. 

So yeah, I'm now a very different person to who was before. I have left my job. It wasn't a job that I hated. In fact, I enjoyed parts of it. But it wasn't a job that I loved. And it was certainly a stressful environment, which was exacerbated by my personality, and a long commute. 

Now I'm doing work that I wake up super excited to do, I actually bounce out of bed some days, like literally. I mean, this does mean I need to be careful with boundaries. When I love my job, I tend to struggle to switch off. And of course, running your own business can feel a bit full on. So the whole boundary thing is still working progress. 

But I have never felt so fulfilled than I do now in terms of work. I love working with the people that I do, helping them, listening to them, seeing improvement in them as they learn and grow. Sharing my expertise and experience, taking something positive from the last four years to use to move forward. 

What I have gained is more opportunity to explore my potential. It turns out that I have a lot more of that than I thought. I'm now doing things that I wouldn't have dreamed that I would be doing. And I have the resources to deal with things much better. 

So when stress comes along, and believe me it does, I actually recognize it for what it is. I handle it better than I did. And I also notice when I'm not handling it and can try to work out what needs to change when that does happen. Jackie from four years ago would have steam-rollered straight through it, pushing through, ignoring what my body was trying to tell me if only I would listen. 

So I see myself as genuinely much healthier now. And happier. More content, more aware of what matters in my life. I think there's something about having that threatened, you know, that taken away from you, that means you're just so much more grateful for even the simple things. Sunshine through the window, the grass growing, being able to be out in it. Birds, I stopp to listen to birds as well now sometimes. 

So yes, I enjoy achieving, being busy, hitting targets, pushing myself. In fact, I love doing all of those things. But I have a much greater appreciation for the other side of the coin, the relaxation, doing less than I can, not always pushing. Being quiet. Okay, that one doesn't happen so often. But I enjoy more peace in my life than I did. And it's quite refreshing. 

I'm also more aware of what "too much" is. And I'm happier doing less sometimes, because I've now realized that I don't always need to be going at 110% of my capacity. And indeed that it's not healthy to be doing that. 

So looking back on what I have achieved has made me realize that I am freaking awesome. Interestingly, I need that validation less than I thought I might. But I'm gonna be honest and say that I do want a bit.

So whilst being unwell I started a podcast, a podcast, which has now over 120 episodes. I started it out of desperation. Out of, I have to do something, and I'm so lost. But I've now spoken to some of the leading researchers in the field, high flying doctors and specialists, as well as people who have shared their own experiences of illness, loss, recovery. Connecting with these people was a lifeline to me. And as I've discovered, it was a lifeline to many of my listeners too. 

I honestly can't imagine how I managed to do this, whilst being so unwell. But I did, you know, necessity maybe? I felt I had to, it was my way of working through it. In fact, listening back to some of my early episodes, I realized how the podcast really charts my whole journey from start to finish. And beyond. 

It's quite personal. And that's kind of scary to think about, you know, putting yourself out there. But I recently spoke with someone who said that being vulnerable is important. You'll get to hear that episode soon. And I am so excited to share it. And you know what he is so right, that vulnerability is important. And I think the harder something is, often the more important it is that we do it. Certainly with something like that. I'm not good at being imperfect, I'm not good at being vulnerable. 

So I found my way to things that helped me, I saw improvement, and then I suffered the devastation of crashes or relapses. And eventually, I recovered. So I think the overriding message I want to get out there today is that it is possible to recover. However awful and hopeless things might seem, you can recover, you can get out of it, you can come out of it stronger, you can see that improvement, you can find those things that help. If something helps a little bit, that is awesome. 

But I think also that we need to be in the right environment to recover. So I think maybe, you know, the awareness today should be around maybe the support. You know, there are, you know, people can recover. People are recovering every day. But one of the themes that I've picked up on is that they need that support in order to do so. 

So if people are having to work because they can't financially afford not to, then it is going to be much harder for them to recover. If people don't have support around the house, if people aren't able to outsource things, to take time for themselves to rest when they need to, to invest their limited time and energy in investigating things that are going to help them, then they are going to find it much, much harder to recover. 

So people need support. That might be bringing in meals, it might be financial support, it may be taking care of your kids. It could be any number of different things, but people do very much need that support in order to be able to recover. And, you know, that is possible. But people can't do it on their own. 

I was discussing with my partner a few years ago, I can't remember how it came up. But I asked him what his greatest achievement was. I actually can't remember what his answer was. But I knew that if I recovered, then recovery would be mine. And now on the other side of it, I know that to be true. It was the hardest challenge of my life, so far anyway, both physically and mentally. But I did get there. And I think that is something to be hugely proud of. And hugely grateful for, that I was able to get the support to allow myself to do that. 

Long COVID, you were a hard and a crappy teacher. But my goodness, did I learn a lot about illness, a lot about my body. A lot about myself. A lot of things I didn't like so much about myself. But here we are. 

I like to ask my recovery story guests if they have any advice that they would give to themselves. So here's what I would say. 

Number one, focus on the can. What can you do? What can you do to help? What can you ask for? 

Number two, celebrate the little wins. You did some breathing and it helped a little bit. Awesome. Keep at it. Don't feel dispirited because it didn't fix everything straight away. No one is good at things the first time they do them. 

Number three, keep an open mind. Things take unexpected twists and turns. The things that help may not be what you expected. Recovery itself may not be what you expected. 

And number four, keep hold of that belief in recovery. 

So in the spirit of boundaries, I need to go and breathe before my next call. So that's me signing off.

Transcribed by https://otter.ai