Learning to Breathe

An Equality, Diversity and Inclusion manager for the trust, Jamie remembers her Covid journey.

I was already emotionally and physically in a terrible place. My Grandma had just died, and life had been pretty brutal. Then I went into COVID.

I remember distinctly, my partner and kids were out. I was sat outside in the garden in early December with blankets wrapped around me. And it was snowing. I’d rung for an ambulance. They’d said it was a 7 hour wait. It took a long time to be able to say what it was on the phone. I genuinely thought I was going to die. I'd never experienced breathing issues like it. They said to me ‘Go into the cold’. So I sat in the garden trying to breathe while the snow fell around me. I'd written a note, ‘Don't tell the kids. I'm struggling to breathe’, and ‘Ambulance is coming. Don't make a scene – I don't want to scare them’. My partner came back and I gave them the note. That's how frightening it got. The ambulance crew came. They gave me some oxygen until my breathing eased and they left (at that point, they were still trying to keep COVID patients out of hospitals).

I was struggling to breathe for weeks. I had palpitations, vertigo and fatigue.

I remember at one point making a future plan for not being here if I didn’t survive, thinking ‘how can I make sure my kids have the best life?’ That that was the level of fear I was operating at.

By early January, I started to feel a bit better. But then I got COVID again. The new variant.

After that second bout, that was when I really struggled. My partner helped to bathe me. I could get to the bathroom but would have to sit on the toilet for significant periods of time to then be able to get back to the bed. I’d count how many stairs I could climb before I would need help. I couldn't watch TV because of my brain fog and confusion. I would become distressed thinking, ‘why can't I understand what is going on?!’ I describe it as being like a dementia patient. I couldn't retain information. For my partner and kids it was horrific. I felt like all I said is ‘Mammy isn't well enough’ I couldn't even listen to my son read his book. I just became a person that slept, got confused and frustrated and slept. That’s pretty much where I was for months.

The criteria at the time to be referred to a Long COVID service was you had to be 3 months clear of COVID. My first appointment with them was on the 20th of September the following year, having had COVID a further two times. My recovery therefore was very much alone and unsupported.

There's lots our body does without us telling it to, like breathing and our heart pumping and blinking. By the time I got to see them, the inflammation that was in the bottom of my lungs had been there for so long my body had learned to breathe another way and whilst the inflammation was now gone my body was breathing as though it wasn’t.

They cleared me for physio to learn to breathe properly again.

I was so fed up of hearing ‘It's a relatively new condition. We just don't know a lot about it’ I wasn't getting what I needed from health professionals, so I realised quite quickly that it was on me and instead of giving up I needed to Try another way and if that didn’t work Try another way again. It became my mantra.

?So I read journals, I joined Facebook support groups, I was doing all the research I could with the limited ability to read and process information.

In the morning. I was having a high protein, high berries, vitamin C. My ability to read increased. I trained myself reading 5 minutes on a morning, on a night time then the same for watching TV for 5 minutes gradually increasing. I kept a diary so that I could look back and see progress even if I didn’t feel it. That's how I tracked my recovery. But it was crushingly slow. I got in touch with a guy who was a personal trainer and did a lot of rehab with people that were told they would never walk again. People that were told because of an injury they couldn't train in the same way, he would find a way around it. I said, ‘Do you want another project? I'm here, I'm broken. I can't do this. Please help’. And we built up gradually. Starting and 5 minutes to over time building up to an hour, after I slept and slept but gradually the sleep got less and the progress became more. I started to think, ‘I'm doing really well’. And so I came back to work. Totally not understanding the impact of being with people all day, processing emails… and suspected ADHD.

?I felt like I was a problem. Not good enough. I'd had huge periods of absence, and to say ‘I'm struggling’ was really difficult. I felt like a fraud. Lots of people were approaching the team saying I need help for many different reasons but one that was particularly difficult was those that said I've got Long COVID. And underneath I’d be ‘I can't deal with that’. A lot of that was just coming to terms with the fact, I now had a disability myself and to use that label. I know we talk about labels not being important, but it was important to me. It was a lot to sit with.

I eventually got referred to our own Long Covid service and they were great. As standard they refer you to a physio, a nurse, a consultant and a psychologist. I didn’t think I needed to see psychologist. But I did one session, and I talked through my Covid journey from start to finish, and she said, ‘You're so resilient. To have got from there to there’. And the way she described it and the way we talked, I thought, ‘do you know what? If I never physically get any better than where I am now, I'm good with that, I am so proud of how far I have come’.?

I've managed to find joy, in the simplest of things in life again.

To be able to sit and have snuggles with my child and have conversations I took for granted, to breathe in his smell. To go for a short walk. And when my eldest tells me he talks to me. I've gone back to being my son's safe person instead of the transactional parenting you can get sucked into when life's busy. And I’m glad. I find immense pleasure in reading again. And I'm so grateful for all the not so small things that bring me huge amounts of joy now.

So I can either sit with my COVID journey and be sad for myself about everything I went through, or I can go. ‘What did it give me?’

It made me kinder to myself. Fatigue has helped me realise that time is a gift. So I'm not wasting time with people who aren't good for me anymore, or doing things that don't give me joy. And I found crochet. My free therapy, I call it. And it reconnected me with my Grandma.

My Grandma was a crocheter. Whenever we were poorly we would go to her house. And we had what we called the poorly blanket. It’s a blanket that she crocheted from all the clothes that my mam and aunties had worn. It's all mismatched colours and it's beautiful. And we'd have the poorly blanket on. She'd cuddle us and say ‘Give it to me’ and I used to think ‘Why do you want to be poorly?’ and now that I am a mammy oh, my. Give it all to me.

Because that blanket was made-up of all these memories and experiences that my mam and auntie's had had. So for me it was putting that all on, physically but also emotionally. COVID gave me back my poorly blanket.

(standing up) I can get it? It's just through there. Do you want to see it? Give us 2 seconds. I'll go and grab it. (she does)

There you go. It starts off as like a rectangle in the middle. Then there's loads of little rainbows. And there's a hole here, which I love because that's a little mistake, but there's a Japanese proverb where it talks about crochet and it says if there's not a mistake in your work, then the bad spirits can't get out.

Crochet was the one thing that I could do because it didn't require a lot of thinking. It gave me that well-being hit of actually being productive something I hadn’t felt for a long time. I'm doing something, albeit it's a cardigan, but I made this flipping cardigan. I was in Tesco and a lady said to me ‘I hope you know how loved you are - a lot of work would have gone into that’ and I said ‘well actually I made it myself. So yes, I know exactly how loved I am’. That gave me all the fuzzy feels and for the first time in a long time I was proud of something I had actually been able to do.

My life is still impacted. Fatigue is still a problem. I'm not as active as I’d like to be. But I'm apprehensive to push to far too soon, I'm in a good place with the mental levels of energy. Physically as well. But I'm just being a little bit cautious with how much I take on. It's definitely been a hell of a ride. Six months ago, I would have been a blubbering wreck talking about it. But I think now I'm ready to talk about it. Because I can talk about it.