So this week marks 2 years since I got ill with Covid. I got sick just over a week before the official lockdown in the UK – so I was doing isolation before it was cool.
To start with I didn’t think it was Covid – I didn’t have any of the symptoms we were told to look out for, and also there were so few cases in Scotland at the time that it seemed so unlikely.
Of course we know now that Covid had been here for months before we thought, and also that there are many more symptoms associated with the disease than the ones we were initially told to look out for. It was when my partner called the paramedics out because I couldn’t breathe that we were told it was Covid.
You can listen to my partner and I talk about my experiences in episode 2 of the podcast, but as this week marks 2 years of getting ill, I thought that I’d share some of the things I’ve learned and some of the things that have helped me over what is probably the worst 2 years of my life. Back when this all started for me, we didn’t know what was coming and didn’t know all of what we do now.
We’ve not cracked it by any means, but if I can share some of what has helped me so far then maybe it’ll help people starting on their Long Covid journey. Of course what works for me may not work for you, but I hope that you might be able to take something useful from it.
First of all - you are not going crazy. Some people may try to make you believe that you are. If you have symptoms, then you have symptoms. Don’t let anyone tell you any different. You know how you feel better than anyone else, even if they do have a medical degree.
But leading on from this, people will suggest things – this may be medical professionals, other Long Haulers or anyone else. They will mean well. Some will be useful – so it’s worth at least thinking about giving things a try even if you are sceptical to start with (so long as they are low risk of course!). This condition has opened my eyes to a range of things that help – both pharmaceutical and holistic. Some of the things that have helped me the most have been things that I would have poo-pooed a few years ago.
Yes Long Covid is completely terrible and awful and you are allowed to be angry and sad and frustrated. If you want to throw things and kick things and shout at people then that’s ok. Trying to keep these feelings in doesn’t help so let them out. We all know we feel better after a good cry!
Something I struggle with is Allowing things to be out of control – I don’t know all the answers, I don’t know when I will recover. Things are open ended and uncertain and I don’t like that. I’m not saying I’m going to stop hunting for answers – because I’m not. And I’m certainly not going to stop trying to find things that help, and keep doing the things I’ve found that are helping. But I think that trying to allow myself to be more patient and let time do it’s work has been something I’ve found has helped. Fix the things you can fix. Don’t stress about things outwith your control.
So, this idea of “Acceptance” – when I first heard people talking about this I thought it sounded like the biggest pile of bollocks. I wasn’t going to accept that this was my life now – what sort of a life was that? But what I’ve come to realise (with some help!) is that I’m not accepting that this is my forever. But this is my here and now. And fighting that is only going to make things worse. Accepting this as my NOW means that I can focus on what I can do now. Constantly fighting against it was not helping.
Another thing I struggled with is being kind to myself – I have always had high expectations of myself and I guess I’ve always had it programmed that it’s lazy to sit around and do nothing. But this simply isn’t true. I’m not lazing around – I am resting, I am recovering and I am doing exactly what my body needs me to do. If the house is a mess and the clothes are dirty then it really doesn’t matter and I shouldn’t beat myself up about it. And I certainly shouldn’t push through symptoms because I feel like I should.
But this did also highlight how important it is to have support. I’ve been incredibly lucky to have the support of an amazing partner throughout this whole illness. Although I didn’t want to, because I have a stubborn, independent streak, I realised that if I let him do all the chores then it left me a bit more headroom to not be exhausted all the time. He’s done the majority of cooking, cleaning, shopping, driving and probably loads of other things that I don’t notice. And boy, does it help.
Other support is important too – I have a couple of amazing friends with chronic conditions or who know people who do. They’ve been amazing because they get it. They don’t need you to sugarcoat things when they ask how you are. Support groups have been fantastic too – knowing there are others out there, comparing symptoms and solutions and knowing you’re not alone has been great. But also knowing when to step away from support groups – if reading other people’s horror stories is bumming you out then maybe it’s time to put facebook away?
I’ve learned about the need to advocate for myself – I have been lucky that all the doctors I have spoken to or seen have been supportive (even if they haven’t been particularly helpful – obviously some have been better than others!) But other people have not been so lucky and it’s really hard to ask for things when you are ill and no-one seems to have any answers. But never be afraid to stand up for yourself or put yourself first.
I have learned a lot about myself – some good, some bad. But being put in a situation where you have to re-evaluate absolutely everything can be a very humbling experience. I now know myself better and in the future I will definitely value my health and my time more, and be much better at saying no to people and not being taken advantage of. Maybe I have more respect for myself too.
I’ve mentioned already that support is crucial, and it is. But your family & friends may mean well (in fact they almost certainly do) but when they constantly ask “how are you feeling” and “are you better yet” it can drive you up the wall – and it’s probably best to communicate this to them before it drives you crazy or you shout at them. Because often people want to help; they just don’t know what to do.
Also, some things that might seem bad at the time can turn out to be good in the long run. For me, I was able to work from home for a while. But eventually I was told that I had to be back at work physically which wasn’t something I could do so I was forced to go onto sick leave. At the time I thought this was the worst thing ever – I felt like I’d lost everything else in my life and work was the only thing I had left. What would I do if I didn’t even have that? And I felt awful for a good couple of months after that. But then I realised that it was a good thing. I had all this time – yes, so I could focus on me and my recovery. What did I need? Since then I’ve improved. I’ve been able to really really reduce my activity and my stress levels – because let’s face it – whatever your job, it’s going to add stress. I’m not there yet, but things are going in the right direction, most of the time. Now I appreciate that I have sick pay – not everyone is so lucky, and I know that it will run out, but trying to focus on what I CAN do is helping a lot.
So, I’m not recovered yet – but things have improved a little, slowly. So what has helped me so far?
The first and biggest breakthrough for me was Breathing. Like many with Long Covid I had awful breathlessness for many many months. Realising that my breathing pattern was the cause of this (and also some of my other symptoms) was a total game changer. Working on my breathing gave me something to get stuck into that was actively helping me to recover.
Along with the breathing, I started to do Yoga – another thing I’d always kind of ignored. Yoga is good for me? Sure but I’d rather go for a run. But again, it’s something that I CAN do – it keeps me moving and breathing and relaxing. It also opened to the door to realising what REAL relaxation is. We always think of relaxation as reading or watching tv. But that’s not proper rest. Yoga Nidra (basically lying on the floor doing nothing but listening) has been another real eye-opener. If I’m feeling tired, lying down with my headphones and a 20 minute yoga nidra can totally rejuvenate me. I try to do some form of yoga or proper rest morning and evening every day.
We know that stress can exacerbate symptoms, so trying to de-stress and outsource as much as possible has helped. Allowing myself to let other people do things for me, walking away from stressful situations and saying no when people ask me to do things or go places that I don’t feel up to.
Do not push through symptoms. Symptoms are your bodies way of telling you to rest. Rest before you’re tired and you might avoid the big crash. Build in rest time to your day, but if you need to rest more some days, that’s ok. Don’t push through, just don’t do it. Not every day is the same. Your recovery probably won’t be linear – there will be ups and downs. Take every day as it comes.
The mind and body are connected – I think we know this but often forget, or fail to acknowledge how important this is. Of course we can’t think ourselves better – if it was that easy we’d have all done it a long time ago. But remembering that they are connected will help - how we feel can affect what we think, and what we think affects how we feel.
Being outside has always been a huge part of my life – pre-Covid I would spend my weekends in the mountains and my evenings out running and cycling. I can’t do that at the moment, but I still get enjoyment from being outside in nature. Again, doing what I CAN do.
I need to Have some sort of purpose – I don’t do being idle well. But I needed a purpose that worked around my body and my limitations – so I started podcasting. It’s actually led me to all sorts of wonderful people who have been very helpful in my recovery, which has been an added bonus. But feeling like I was doing something with the skills and abilities I did have, has been awesome.
I also started Speaking to a counsellor – I really wish I’d done this earlier, but always assumed that talking to my partner was the same thing. But it’s really not. And also - They are literally paid to deal with your shit. Take it out on them instead of your loved ones.
As hard as it is – I’m trying to live in the moment – not worrying about the future, or the past. If it’s a bad day, then find something on your happy list to make it less crappy. Curl up with hot chocolate and lord of the rings (or whatever helps you!) And if it’s a better day – that’s awesome, enjoy it but don’t over-do it. Enjoy feeling less crappy.
We will get there – with or without help from others. Keep recovering and don’t forget to listen and subscribe to the Long Covid podcast! You can also subscribe to the podcast newsletter and join the Facebook support group – links below or via the website.