Welcome to this episode of the long covid podcast. As we come to this time of year, it becomes a time of reflection, for me anyway. So today i'm treating you to my 2023 reflections. What have I learned, discovered and noticed this year? Something of a dramatic year for me in many ways!
To say it's been a bit of a year would be a bit of an understatement, that's for sure. I'm not going to give a blow by blow account of my recovery itself, because i've spoken in depth about that before – so if you've not already heard it then please check out episode 94, which i'll drop a link to in the show notes too.
So a year ago, when I was writing my 2022 reflections, I was coming out of what turned out to be my worst crash, certainly in the latter part of my recovery. But possibly of the whole experience. It certainly felt awful because until that point I had been starting to feel like I'd been making real progress, and was starting to believe that maybe this was the time that it was actually happening. And that's a scary thing to think – because all too many times before the rug had been pulled out from under me. And of course – this occasion was no different. So a year ago I was feeling horribly frustrated.
But looking back over the last year – something that one of my wonderful guests said to me springs to mind. And that was the wonderful Johanna in her recovery story. I've mentioned this several times to people and I think it's important to say, because unfortunately it was something she said off air, after we'd finished recording. So I want to credit Johanna for this – and she said that she's heard plenty of people say that the worst crash can sometimes come at 95%.
And in hindsight – I don't think I was anywhere near 95% a year ago. But I thought I had seen significant improvement, that things were heading in the right direction and that I really was well on my way. Recovery was happening. Then I crashed. So hard. Again, with the benefit of hindsight there were plenty of factors that led to this outwith my control. But at the time I just felt the worst I'd felt in so long, both physically and mentally. And I think the mental pain, the loss of that hope, the return of that feeling of hopelessness. The numbness and complete shutdown. That was worse than the physical symptoms.
So it wasn't a good time! So how did I get from there to here?
Well, I got through the worst of that crash. Gave my body what it needed. Remembered that I'd learned a lot. I had a lot of tools. I knew a lot more now. And that actually I wasn't back to square one. Nowhere near. Even though it had felt like it initially! I wasn't perfect, but I was much better at just letting my body do what it wanted to do, and as I came out of it, being more gentle with everything. Over the Christmas break I started to feel much more like I had before the Big Crash. Physically I was back to doing better. Mentally and emotionally I was struggling. I'd lost a lot of that confidence that I'd been starting to build up before the crash, and it took me months to get that back. And some of that trauma is still with me today.
During January I started to feel stronger. I was doing more, but again struggling with confidence in my body. After all, it had let me down last time I had started to trust it!
But gradually, slowly....I started to get it back.
And then at the end of January my career break from work got approved. This would allow me some time to really focus on me (I think the stress of not working, being on sick pay, having to send in sick notes, occupational health stuff, etc, and then coming to the end of sick pay, was causing me more stress than I realised. In fact, I didn't realise how much stress until I didn't have it any more! And I know that all those things are there for my benefit – but it was A Lot of Stuff to handle. The career break really allowed me to focus on what I could do – which was more and more – rather than what I couldn't. When it got approved I literally felt a weight lifting off my shoulders in a way I hadn't realised was even possible.
And then recovery happened. I mean, it didnt just happen! But that's part of a longer story told elsewhere.
But I think what I've spent a lot of time reflecting on recently is the post-recovery. Or coming out of recovery into what life looks like now. Because that was a lot weirder and more difficult than I expected. I felt more at sea than I could possibly have imagined.
I had spent over 3 years imagining that recovery was the end-game. It was the goal. And don't get me wrong – it was. It was absolutely what I wanted, and i'm so incredibly grateful that I got what I wanted. I also know that I worked hard for it, it was painful in so many ways, but that I've come out stronger.
But it was also like recovery wasn't the end of the road as I'd thought it would be. Recovery was actually the start of another journey. The journey of who Jaxter 2.0 is, because I now have the opportunity to find out!
Initially I was thinking – oh great, awesome, i'm recovered. I can do what I want. I can do ALL the things!! And I could. In some ways the possibilities seemed endless. I felt like I could do anything. But at the same time I was terrified of doing too much. What was too much now? Everything had changed. Limits were different. In some ways I didn't have limits. But of course I did. Because everyone does. And looking back to my pre-covid life, I was all too aware of how often I'd exceeded those limits. To the point where my body had been so on the edge, that it had practically imploded with that initial covid infection.
But gently – and sometimes not so gently – I pushed those edges. I played with those boundaries. I had to learn to think like an unfit healthy person – not something I had ever been before! So I had to approach exercise and fitness like someone who couldn't run 5km – because I couldn't! So I went out on these frustrating runs where I would run for 30 seconds and walk for a minute over and over. But fitness built up. It felt frustratingly slow, but it happened quicker than I realised at the time. Because as soon as I was able to do more, I was then pushing at those limits again - so I never realised how much fitter I was getting until I looked back over several months.
I was back in the hills – smaller walks, then becoming longer walks. Gradually increasing. But remembering to listen to my body. There were times where we were thinking of going out, and I just said. Nah. Not today. Body says no. it's been a busy week. Maybe I'll just do something gentle and go for a swim. Not something I would have ever done before!
I remember Lorrie Rivers describing chronic illness like having to learn your new body. And she's absolutely right. But I think recovery is the same thing – kind of in reverse. It's like learning your new new body, all over again. Because new me and a different me. A better me for sure, but definitely a different me! A me that has boundaries. I say no to things now! Not as often as I should, but it's a start. I am better at putting me first when it matters, saying what I think, and caring less about pleasing others. It's all still work in progress!
But not that there weren't hiccups along the way. There were definitely moments where I felt tired and started panicking that maybe I'd got it all wrong. I'd done too much and Long Covid had come back. It was amazing how quickly my brain would go back into that illness mindset. Because I think that was my greatest fear – ending up back ill again!
But over time I started to get more used to the fact that sometimes when you did things, you got tired. And this wasn't fatigue. This was genuine tiredness because I'd walked a long way, or I hadn't slept well. Or I'd had a super busy week. Or I was in the second half of my cycle. Because all of these things cause me to be tired. Regular people get tired. And I needed to respect my body when I was tired, rather than pushing through – like old me would do! And as time went on, I stopped thinking about long covid. Well, I didn't but I was much more clear that it was a part of my past. An obstacle I'd overcome. I didn't want to forget it, but I definitely wanted to move on from it! To heal emotionally from it as well as physically. And think that emotional healing took longer. Is still ongoing, in some ways.
I was finally learning this concept of balance in my life. That it was fine to be crazy busy, and to do lots of exercise. And for my brain to be what my partner affectionately calls braining. Where it's firing out idea after idea, and planning 20 different plans and running in circles. But also that I needed to balance this out with not doing all those things. And that if my brain had a tendency to brain a lot – I needed to have ways of turning that off. And luckily I had learned several such strategies during my illness.
When I announced my recovery, I was all ready to dive straight into all the things. I felt like I was overdue on living life! And I felt a need to be productive. What was I going to do for work? I needed to work this all out. NOW!
And I very clearly remember a session with my absolutely fantastic therapist around this time. I was flapping about and my brain was running at a million miles an hour and I had plans and plans and plans. I think she was exhausted just listening to me. And she gently suggested that maybe I didn't need to rush into anything, or solve all the worlds problems all at once.
And this was a revelation for me. She was absolutely right of course. She generally is, but don't tell her I said that!!
So I took some actual time off. I mean, I wasn't doing nothing. I was still recording for the podcast. I got my breathwork certification. And I was having lots of thoughts. But rather than diving straight into them, they went on a list for – later. In fact it was mid september before I really started working. And I was really grateful for giving myself that time to enjoy being me. And working out a bit more of who me was now.
So what does life look like now? 6 months on from recovery.
Well, I spend a lot of time sitting on the floor! It turns out that this is my happy place, and really helps me to feel grounded. It might be a bit awkward at Christmas dinner – maybe i'll relent and use a chair!!
I feel fantastic. I feel so grateful to have my health back. I love doing stupid little things that I took for granted before. I feel a lot more present in my own life. I think I connect more with what i'm doing.
I'm much more aware of stress. Of course I've not erradicated stress from my life. I don't think that's possible! But I am aware of it when it arises, and I'm better at managing it. The same with anxiety. Anxiety was present in my life before I was sick, I now realise. I just refused to acknowledge it. Now I notice it and try to give it space. I'm not always perfect at it – but no one is. Perfect is a word I'm trying to get away from. So it the word “should”
I'm trying to be better at giving myself space when I need it. Taking time off. Working less.
I appreciate the irony of this, having just started a new business. There's a lot of set-up and work to do. But I'm genuinely loving doing it. Working with Vikki at Breathing for Long Covid is such a joy. I've never worked with someone who thinks and works so similarly to me, but also has beautifully complimentary skills. Vikki and I are so in sync that we once emailed each other the same link at the same time to an article that we'd found. And we haven't actually ever met in person!!
I was so keen to use my experiences of Long Covid – the hellish 3 plus years – to make something positive out of it. In some ways I feel like I've lost 3 years of my life. That they are gone and wasted. And although I know that's not true in some ways (& a very kind and lovely person sent me a message recently to remind me how much I have helped them), I feel like I wanted to use it to create something positive.
Which is why the podcast will absolutely continue. I have no plans to stop. The connections I have made, the things I have learned from those I have spoken with and the new skills I have gained have been incredible. It's made me rethink so many things about my life, about what I can do and about what I want to do!
But also, why i've started Breathing for Long Covid. The power of the breath is so incredible. I've experienced the amazing results from it, and I want to help others who are still struggling. I think when you are struggling with something like long covid, you need to work with someone who understands the illness. And is able to tailor the exercises to the person and to the illness. Vikki and I have that ability, and the course we have designed is already helping people. I just finished up my final class of this cohort last night. And I felt quite emotional. It was a special moment. The connections I have made with the group members, the improvements they have seen during the course, and maybe more importantly, the tools they have learned that they will take forward in their recoveries.
So without wanting to sound too much like a sales pitch – if you're interested in joining us – there's a link in the show notes for more information and to sign up for our next cohort of classes in January or March.
In terms of fitness, I'm not back to my pre-covid levels yet, but I'll get there. And I'm now at a point where I don't even think about doing too much. I just listen to my body. Does it want to do things today? Yes or no. I have faith my body will handle what the world throws at it. Because I am stronger and more resilient, and I have learned the tools to deal with whatever happens next.
2 weekends ago I did possibly my biggest walk since illness in the most difficult snow conditions, and we camped out in -15. It felt out of this world incredible. I could barely believe it. This most recent weekend, it was wet and windy and I barely left the house. I think my life has finally found that balance!
I'm not perfect – and I never will be. I think what is so beautiful about us is that we are all flawed. I know I certainly have mine! But I think what is most important is to be happy. And I always thought I was before. And maybe I wasn't unhappy. But having this opportunity to rebuild life in a way that I want it...that's definitely something.
I'm never going to be one of those people who is grateful for this illness. Because those 3 and a bit years were hell. But my glass is always half full rather than half empty. And I'm going to be grateful for what I have now, and move forward and enjoy that.
If you're listening and you're unwell, if you're struggling physically, mentally or both. You are not alone. Find those meaningful connections – the ones that help rather than hinder. Keep doing those things that help you. Search for more things that help. And believe that things will get better. They did for me, and I truly believe that they will for you too.
