75 - My 3 Year Reflections - Are we nearly there yet?!

Episode 75 of the Long Covid Podcast is Jackie's reflections on 3 years of Long Covid, and why there is cause for positivity. Despite the many mistakes, this is reflections on a search for answers and "hacking" your way through to see improvement.

This is not medical advice!

Transcript

so this week marks 3 years since I got sick with Covid. It was also international long covid awareness day on wednesday, and a lot of people I know are having their anniversaries at the moment. it's a sobering reminder of how many other people who came down with covid that week 3 years ago and went on to develop long covid are not yet recovered. And then of course, the thousands and thousands and thousands that followed in their wake.

When we're unwell we often lose the structure in our lives - work, social events, days of the week! years! So when we get a particular marker - a birthday, christmas or the 3 years from when you got sick marker, they tend to be a time for looking back and taking stock. And that I guess can also be quite a negative thing sometimes.
But until earlier this week, I was actually feeling super positive about it - things were going so much better, I was able to do more and although I wasn't there yet, I was feeling really positive about recovery. And then on monday morning i went down like a sack of spuds. But actually, with a little bit of perspective, I'm now still feeling really positive. 

But this story doesn't start with me hitting the deck on monday, it obviously goes back a lot further. Three years further, in fact, if not earlier. 

Three years ago it was Sunday, I was out hillwalking with my partner - this wasn't unusual, it was something we did every weekend, every holiday, in fact it was how we met. it was what we did. I'd been feeling tired - this also wasn't unusual - i worked a lot, had a long commute and it was also peak exam & concert season at all my schools, so it  was busy and stressful. 

During the course of the day i became more and more tired to the point where i was struggling to walk. My partner drove us home and I was pretty much out for the count. In hindsight, my breathing also wasn't right - but at the time i was so busy being knackered that i barely noticed. 

I tried to get an early night and got ready for school the next day. I didn't make it - nor did i make it in again. At no point did I think this could be covid - there were so few reported cases, and I didn't have the symptoms we were told to look out for - this just felt like  a stomach bug or a cold or something. By Thursday afternoon i felt better so we went for a walk to the park. 

I was struggling with my breathing. I went to bed and things got progressively worse throughout the day to the point where my partner called the paramedics late that evening because I couldn't breathe. They confirmed it was almost certainly covid, that i should rest & isolate and I'd be fine in a week. And why wouldn't i be? I was fit, healthy and 30 years old. So I had no reason to be concerned. 

Writing this from three years on, i can tell that i've learned a lot. Because thinking back to the lifestyle  that i was living before I got sick, I'm wondering what the hell i was doing! i now know that i was expecting far too much of my body. But at the time it all seemed normal. I now know that being very fit doesn't necessarily mean completely healthy. And that if I was working a stressful job and doing a lot of hours - often more than required because i've always been a yes person - then also doing a lot of physical activity on top of that is adding stress on top of stress on top of stress, which isn't a healthy state to be in. So before I got sick, my nervous system probably wasn't all hunky dory. When I then - unintentioanlly - added covid on top of that - well it was like a tinderbox waiting to go up. But in March 2020 I had not yet learned that lesson. 

By March 2021 things were not a huge amount different, other than my mental health was worse. I had been ill for a year - this seemed utterly unconceivable at the start, but it had happened. I'd had better periods and worse periods, but other than the couple of months up to July 2020 where I thought i was getting better, I'd had no real improvement. At the time I totally thought i was coping, and had convinced myself that things were getting better - but they quite obviously weren't. 

I was working from home, so this saved me the travel to work (which was significant), I was able to have a lie-down at lunchtime and I was able to let my partner do a lot of things for me. But i was still largely working the hours I would have been in school, with not a lot of flexibility, due to the job. Because I've always been a yes person, I was also taking on extra - I thought if I had the quote unquote luxury of being allowed to work from home then of course it wasn't a bother to help other people at work out with IT issues or putting together music videos for schools. Of course, working from home wasn't a luxury - it was something i needed because I was sick, but as i said, at the time i thought i was coping. 

I was pushing myself to do far too much physically too - but in my mind I had reduced everything SO drastically from what i'd been doing before, that I felt there was no way i could reduce any further. "I'll be ok by next week, I'll just push through, things are getting better" I thought, How wrong I was, on all points - in order to allow my body to heal I had to reduce what i was doing so much more than I thought possible! But I still hadn't realised that at this point.

It was around this point where i started doing the "my long covid" videos on youtube, and looking back to the one I did on my one year anniversary, i look like a corpse! Honestly i can't imagine how I thought i was coping, or how pushing myself to do too much was the right way forward, but it was all I knew at the time, I thought i was doing the right thing, and although it clearly wasn't working, I hadn't really heard anything better. It seemed like my options were limited and that was the only one I had, so I stubbornly kept at it. My counsesllor described by stubbornness and determination as both my best and my worst qualities. This was definitey the "worst" coming to the fore.

By March 2022, my 2 year anniversary i had stopped working, stopped pushing myself and found things that helped. I'd learned a lot about what was going on with my body which was really helpful, because before I was flailing - I had no idea. Everything was wrong and I didn't know what to do. Now I knew what i should be doing - calming my nervous system and resting, and what i shouldn't be doing - pushing myself. 

Stopping working around 6 months previous to this, although it wasn't entirely my choice at the time, turned out to be about the best thing  that could have happened. Because it gave me an opportunity to really rest and focus on what i should be doing, but also the time to really explore what it was that i should be doing - because a year previously i just didn't know. If i had known, i'd have done everything i could to do it, but i just didn't, which was why i'd been stubbornly pushing on and on. 

I also started the podcast - by march 2022 i'd been going about 6 months and had spoken to so many wonderful people who had given me ideas of things to try. I'd worked on my breathing which had helped with the breathing of course, but also the heart palpitations. I'd learned about hydrating and salts which helped my dizziness on standing. I'd learned about yoga nidra and real deep rest. I was doing less which helped with the post-exertional symptoms, and my nervous system was slightly less out-of-whack, which was helping reduce the fatigue a little. I'd also started speaking with my counsellor by this point - she was hugely helpful and i'd wished i'd done it earlier. 

Things were still far from right, I still crashed hard, overdid it, pushed myself too much, but I was learning. I was feeling more positive - i had seen some improvement. On better days I'd been able to do things, without quite so much cost. I was feeling coginitively a little brighter. I had tools in my toolbox now that i didn't before. I had seem with my own eyes the impact that these tools had when used at the right times and in the right ways. 

I really don't like the word acceptance, but i had at least accepted that pushing through wasn't working, i had to try a different way. I had accepted that this was life for now and I had to do what was best for me - or what i thought was best for me, at this point now. I had also accepted that i would do everything in my power to keep improving and ultimately recover, because for me there was no other option.

So back to the present - march 2023, and why wiping out on monday isn't a cause to worry. I mean, obviously it kind of was - it was the worst i'd felt in ages, and lying in bed unable to move your head  without feeling nauseous is absolultely no fun - i'd imagine plenty of you can relate. It's rough! But it didn't feel long covid related. I've had enough long covid crashes and this felt different. I think it actually was a stomach bug this time, and once i realised that it was actually a bit of a relief. Remembering that this happens to regular, not-ill people, that they get sick too. Stomach bugs are nasty, but normal. The next day was slightly better, the day after I was out of bed, and today I'm tired but functioning. 

And it's given me an opportunity to remember all those lessons i've learned over the last 2 years, and to use the tools that i now have in my toolbox. And that's the reason this episode is going out late - because i didn't push through when i was too tired - i rested. I didn't try to have unreasonable expectations of myself. And that's ok. I'm not saying i'd want to repeat this week again, because honestly, no thanks, but it's been helpful in some ways - horrible in others - but it's also a reminder of how much better things are now, generally, because this week was a bit of a shock to the system to be feeling this rough after a much better spell. 

So up until monday when things went temporarily tits up, so to speak, I was feeling good. Most of my symptoms had largely gone - i still got occasional chest pain which was definitely a worry, but fairly rarely. I was able to push myself more, I wasn't having to be so careful with my pacing. Physically i felt i was able to push myself to a level i hadn't been able to without symptoms. I was being careful not to do too much too soon, because I didn't want to trigger a relapse, but i felt like i was readjusting to being able to do more. It was very bewildering but also wonderful. My nervous system felt much more regulated and being able to do more was making me happier - which was feeding back into the positive loop.

i felt like i was in a much better place than i had been, probably even before covid, but certainly since. I mean, things aren't perfect. I'm still too sensitive to stress, although I've recently removed a big stressor and feel a lot better for it, like the weight literally lifting off. I'm still very anxious around people and fear around getting reinfected, and I'm still dealing with the trauma of the whole thing. But this is stuff I'm working on, and am confident that I'll get through it. 

So this isn't a recovery story - but it's a promise that there will be one. I hope that it won't be too long, but I've learned that expectations are unhelpful and ultimately lead to disappointment. So I'm not putting a date on it. 

Things are so much better than they were and actually doing this and looking back at the snapshots of 3, 2 and 1 year ago has yet again reminded me of that. My partner is always a better judge of how I'm doing, so when been saying recently "yeah, things are going well", then maybe I should listen to him! And it actually took me to do this, to go - yeah, you're right. This week aside, obviously!

So to anyone who is still on their journey - which you probably are if you're listening to this" - I'd say, don't give up, we'll get there. Keep doing the things that help, try to avoid the things that don't help. And don't beat yourself up when you inevitably slip up - learn from it. We are all human. Use those tools in the tool kit, and add to your toolkit. There's always  new things that I'm learning that I think - oh, yeah, that's going on the list! And focus on what you can do, rather than what you can't - this mindset has been hugely helpful to me, especially recently. 

I think maybe a final thing I would say is - When I come through this, because it's always "when" not "if". When I come through this - I will not be the person I was before I got sick. And I think that's a good thing - because looking back, I don't want to be that same person, she wasn't healthy and she wasn't that happy either. I thought she was and for a long time I would have given anything to go back to exactly that life. Don't get me wrong - I want to be able to do many, if not most, of the things that pre-Covid Jackie did. But I also know that I value  things differently now - my health for one, and that I have more respect for myself and my choices than I did before. So although i will do many of the same things, once I'm able to, the way I do things will be different, and I think that's a very good thing.