Post covid grief and future perspective

Long covid: two simple words that I was blissfully unaware of when the pandemic started. Like many others, I thought covid was like the flu and wouldn’t really impact me (longterm). Oh boy was I wrong. Ever since October 2022, those two words have defined my life. Through many ups and downs. Around December 2023 I felt great, I almost thought that it was over. And then came a cold, followed by the worst crash so far. I had very little energy or motivation to write about anything. So I took some time to really focus on what I needed, what my body needed, wat my mind needed. And I think I’m finally starting to get there. So here goes:

The last year and a half has been an interesting experience. For over a decade, my life was ruled by depression and then one day, everything changed. I’m not entirely sure what changed exactly, but it’s like I had woken up from a very deep slumber and I experienced such clarity. I remember sitting on a park bench, taking in the evening air and feeling completely at peace with the world. Somehow, I knew that I was gonna be alright. The next morning, I woke up with chills, a horrible headache, a cough and back pain. I tested positive for covid for the first time, nearly three years after the pandemic started.

I panicked, thinking this would be the perfect trigger for yet another depressive episode. So I vowed that I would do everything in my power to not let it get me down. I have no idea how, but aside from a couple of bad days following huge setbacks, I have successfully made it more than a year and a half without depression. That is huge and I’m extremely proud of myself for making it this far. Because for a long time I didn’t think I’d get there.

However, that doesn’t mean that it has been an easy ride. See, my covid symptoms still persist to this day. I find it hard to allow myself to feel good about my life, currently, even though I feel okay right now. Perhaps it’s more of an acceptance thing, I don’t know. In essence, I switched from one chronic illness to another. Which makes it nearly impossible to do the things I long for and limits me in my day to day life. Albeit in a slightly different manner.

Feeling stuck

Two months ago, I celebrated my 23rd birthday. My golden birthday. Whilst I don’t care too much about those things and haven’t even properly celebrated in years, it seems like a significant milestone. And I gotta admit, turning 23 on the 23rd has a nice ring to it, it’s kind of my lucky number.

Even so, right now I’m kind of stuck between feeling it and not quite believing that I am actually 23; I still feel like I’m 17. Nearing my mid twenties, though all my twenties thus far have felt like some sort of fever dream. Perhaps it has something to do with the fact that the pandemic started around the time I turned 19, which put a halt to most of my travel plans and has (as mentioned) taken a large toll on my overall health. Or perhaps it is the fact that I feel like I have very little to show for it. See, my life so far has turned out quite differently than I had expected. Not quite in a bad way, but not necessarily in a good way either.

Had you asked me seven years ago where I’d be right now, I’d probably have said that I would’ve gotten a bachelors degree, moved halfway across the world and would be well on my way to completing the triple crown of hiking. And yet, I’m nowhere near any of that. I’ve hiked some lovely trails, met awesome people and seem to finally be in a good place mentally. I’m proud of who I’ve become, but I’m not so sure I recognise myself.

For a long time I was angry. I felt like I had lost so many years of my life to illness and I figured it’d be done by now. That I would finally be able to live and breathe. In some ways I’m getting there; slowly starting to get it together. I sort of feel at peace with life, I’m maturing, learning to manage my anxiety in a healthy way. In other ways, not so much.

Frustrations

While it can be very reassuring to hear that my symptoms are not in my head, or to get validated through certain diagnoses, it can also be quite disheartening to hear that I may need to readjust my expectations of what “recovery” might look like. Or, at the very least, how long it is going to take. Because my goal of May 2023 has long since passed and I’m still not quite there yet. I’m running out of patience, longing for the mountains. Rationally, I know that packing up and going right now, could jeopardise my recovery. Irrationally, I don’t care and I just want to enjoy the majesty, the fresh air and the silence.

Long covid is a very lonely disease. And I’d rather be “lonely” in my happy place, than stuck somewhere people don’t understand me. Partially because, sometimes, I don’t understand it myself, but also because this disease can be so unpredictable. My body doesn’t feel like it belongs to me anymore. I used to never be cold and now I’m shivering all the time. My autonomic nervous system is malfunctioning. Everything hurts; my joints, my muscles, my back, my wrists…

It’s especially tough to navigate the ups and downs of good days and/or weeks, followed by things like PEM and (symptom) relapse. As someone who has a tough time diverting from an “all or nothing” mentality, I can say that pacing is no walk in the park. If I have a good day, I don’t want to have to think about the fact that tomorrow could look very different, that I need to save my energy and not overdo it because feeling good in the moment doesn’t necessarily mean that it’ll actually last or that I have actually recovered. Sometimes ignorance is bliss — until it isn’t.

At the same time, I feel guilty for complaining, because I know that there are people whose disease progression is much worse than mine. People who might not even experience those good times. My heart aches for those who have dealt with ME/CFS and/or POTS for years. Those who are bed-bound without any answers, who truly feel like their lives are over. This disease SUCKS. I know it doesn’t get anyone anywhere to participate in a misery match, but sometimes it does help gain perspective.

Because, to be fair, I definitely managed last year better than nearly any I did when I was depressed. Maybe it’s maturity, maybe it’s determination, or a different perspective, or perhaps it’s freshly instilled hope for the future; probably a little bit of everything. I started making art again, improved my photography skills and went on not one, but two short hiking trips despite the odds and despite both ending in debilitating fatigue.

In a way, I love life more than ever. Everything is more colourful and and magical and beautiful. The veil has shifted. The longer I stay mentally healthy, the more I’m starting to believe that I won’t fall down again anytime soon. And I’m extremely thankful that I’ve managed to stick around to make it this far. That I haven’t lost hope that things will get better.

Unfortunately, none of that negates the fact that I’m so over these limitations. I don’t want to have to watch what I do every single day, or get anxious anytime I hear anyone cough for fear of being incapacitated for days or weeks on end. I don’t want to feel like I’ve just breathed in a lot of smoke or have lint stuck in the back of my throat or for my body to hurt so much. And I’m sick of being unable to find the words for what I want to say because my brain is too exhausted and turns into soup.

There’s so much that I want to do that just seems next to impossible. And that saddens me. Though I’d rather feel sad than to be void of feeling. As much as I may hate disappointment, it beats not having anything to feel grateful for or a goal to work towards. Even if it takes much longer than expected.

What now?

I’m not sure what the future holds. Yes, right now I’m relatively okay, but I’m afraid to think about whether it’ll last this time. Over the past year, there have been a couple of moments where I felt like I was (nearly) there and every time I either went well past my limit, caught another infection, or both. And every damn time it sent me very far back.

While that does make me insecure, I do still feel that peace. It’s not rational, but somehow I know I’ll be fine, however this plays out. I still have many of the same aspirations as I did as a teenager; I’m as ready as ever for adventure. I still want to write and make art. I’d still like to go to uni some day to study palaeontology, (though my focus has shifted from biology to geology and I’m starting to like plants and hominids about the same as theropods). And I still want to travel to meet new people and see all the beauty that this world has to offer.

Yes, hiking remains on top of the list and I don’t think that that’ll ever change. And yet, there’s something comforting about the monotony I’ve found myself in. It is extremely boring, and yes, it is far from the first thing I would choose if I had the option. But at least I’ve got things to look forward to, things that excite me, that make life worthwhile.

I always thought that I couldn’t find it so close to ‘home’. And while I still don’t believe I’ll spend the rest of my life here, I don’t feel the urgency to get as far away as possible anymore. I probably will, when I can, but right now it is okay. I am okay. And that’s more than I’ve had for a long time.

The pieces of my puzzle are slowly starting to fall into place. It might not be at 16, or at 18, or at 20, but I know that I’ve made my younger self proud. Life is worth living, all hope is not lost and I am okay.

♥