Jess Casey: My long Covid hell

Like many other healthy and mentally agile people, Jess Casey was totally unprepared for the pain, brain fog, exhaustion, and low mood that have accompanied her bout with long Covid

Irish Examiner Education Correspondent Jess Casey describes her experience of long Covid. Picture: Eddie O'Hare

Sorry I haven’t been responding to your emails, calls, or texts. I’ve been dealing with long Covid, and it’s been grim.

The day before I returned to work in January after my dose of Christmas Covid, I walked up the hill near my house. In isolation, I’d looked up at it as I stuck my head out the bedroom window gasping for air, telling myself I’d climb it when I was better. At the top, I thought smugly to myself: “I am cured.” I even took a photo of myself up there and sent it to my fiancée. Two days later, I was back in bed overcome with exhaustion.

I am one of thousands of people in Ireland who’ve experienced long Covid. There’s no generally accepted definition but the term has become shorthand for the persistent, prolonged, and varied symptoms that can stick around after a Covid infection. If you really want to get technical, the term ‘long Covid’ applies to symptoms lasting 12 weeks post-infection — before that, it’s usually considered ‘post-acute Covid’.

There’s a lot we still don’t know about the condition which affects people in different and complicated ways. However, we do know it’s an issue affecting many people. A HSE spokeswoman told me the number of people affected after an acute Covid-19 infection remains unknown, but published reports indicate approximately 10% to 20% of patients experience lingering symptoms for weeks to months.

Despite this, there are massive gaps in terms of regional clinics dealing specifically with the issue.

As reported by the Irish Examiner’s health correspondent Niamh Griffin last weekend, there are just seven post-Covid or long Covid clinics currently linked to the HSE national model of care.

I caught Covid on Christmas Day. I’ll be 30 in May and, while you’d never have caught me training for marathons, I was a fairly active woman. As boring as it sounds, I kept busy doing jobs around our house, on top of reporting five days a week as this paper’s education correspondent. It feels like a different life.

Since March 2020, I’d been more afraid of Covid harming my loved ones. I assumed if I caught it, I’d end up in bed for a few days, no big deal. Throughout my 10 days of isolation, I sweated, coughed, and struggled to breathe. The doctors I spoke to over the phone told me to rest. A sick cert for three weeks off was posted out to my house. I vaguely remember worrying about taking that much time off work.

After apparently recovering from Covid, Jess Casey finally achieved her aim of climbing a nearby hill. Two days later she was back in bed overcome with exhaustion. Picture: Eddie O'Hare

The worst of my typical flu-like symptoms cleared up surprisingly quickly after ten days. But in the days after my isolation period came to an end, I felt like I was recovering from a head injury. I lay dazed on the couch in the prone position for days, and I could not tell you anything else that happened during that time except that the TV in front of me was on.

As my return-to-work date came closer, I started to feel better, hence the triumphant walk up the hill. However, I also started to realise my cognition still wasn’t what it used to be. One night, I fought back tears as I seriously struggled to subtract three and a half from nine. Another evening, I needed time to figure out four times 20. I was hardly Einstein prior to Christmas 2021, but I could do straightforward maths relatively quickly in my head.

I was also suddenly very forgetful, so I couldn’t be trusted to put things in the oven or on the stove. I’ve improved a lot since but, even now, my memory is still not what it used to be prior to Covid. I was always the one tasked with remembering dates and details but, on bad days, I’ve struggled to remember things like the surnames of my closest friends.

Despite all this, in a weird way, at the start of the year I was slightly relieved I’d caught Covid. We stuck to lockdown rigorously and, as a result, we saw very few of our friends. When the last restrictions were dropped, and I thought I was recovering, I hastily arranged a weekend catch-up in another county to make the most of my little bit of hard-won immunity before it ran out. I even sat and ate inside a café. I felt like I was 60% better.

But I had no real structure in place for resting and recovering because it’s something I never had to think about before so I found myself grappling with a severely reduced workload, struggling to finish out a day back at my desk.

I saw a GP to tell them my mind kept going blank, and that I was forgetting words but I was so exhausted, I forgot the word for ‘blank’ in his office so instead struggled to explain how I felt with confused, groggy, metaphors. I broke down in tears, thinking I was going mad.

Thankfully, he referred me to St John’s Hospital in Limerick City. I will never forget the kindness of the staff in the medical assessment unit or the compassion my consultant had as he peered at me over his mask and told me ‘this is not in your head’. I will forever be grateful they did not dismiss my concerns, an experience that I know is not universal for sufferers of long Covid, or chronic fatigue syndrome and ME (myalgic encephalomyelitis).

There’s no single diagnostic test for post-Covid, so everything else is ruled out first. After multiple tests, I was prescribed rest and drugs to work as anti-inflammatories.

'One night, I fought back tears as I seriously struggled to subtract three and a half from nine. Another evening, I needed time to figure out four times 20.' Picture: Eddie O'Hare

Even still, the real crash came for me towards the end of February. I unfortunately learned about ‘post-exertional malaise’ as I experienced it. I got trapped in a cycle where I’d attempt normal life on Monday thinking I was taking it easy, crash badly that afternoon, spend the next days recovering slowly in a slump and by Sunday insist on helping do the big shop — the only time I’d get out of the house that week and feel I had a bit of control of my life. Rinse and repeat.

Fatigue post-Covid can be different for everyone. The best description I have seen match my experience is ‘profound exhaustion’. I’ve experienced having no energy to chew food in my mouth, no energy to shower, to dress, to think, or to speak. Everything seemed insurmountable.

Basic self-care such as getting fresh air, or chatting to friends, was completely beyond my capabilities during those spells.

On top of the fatigue, I also experience painful joints, tinnitus, burning headaches, occasional heart palpations, and breathlessness as well as anxiety and low mood. Not for any neurological reason, I don’t think, but more because of feeling isolated, embarrassed, and struggling with things I could do before without a second thought.

I’m now 14 weeks post-infection. I’m improved but I now realise my recovery might not be linear. Working with a private occupational therapist has been a lifesaver — I’m pacing my days, stacking both cognitive and physical activities with rest so I don’t overdo it. I prioritise what’s essential.

At the time of writing this, I have had a few good days in a row, and I’m feeling hopeful. It’s a win to have enough energy at the end of the day to empty the dishwasher or to put on a load of washing.

Challenges facing those seeking treatment

I’m writing this piece not for sympathy or to act as a cautionary tale, but to try and highlight the ups and downs of accessing treatment for long Covid.

I have a good support network, an understanding employer, access to transport, and no caregiving responsibilities.

Even with these advantages, there have been days when I could not have felt more useless. I am a professional communicator, and I have struggled to communicate long Covid to friends, bosses, and medical professionals.

How will those who have English as a second language, or who live alone, or who have kids relying on them fare if they are struggling to get back to where they were before their infection?

Different types of long Covid patients may need to see different doctors such as respiratory specialists, cardiologists, or neurologists, and access to different therapies such as occupational therapy, physiotherapy, counseling, or dietitians. It’s why access to the one-stop-shop long Covid clinics is so important.

Many patients are paying for support and treatment privately. The Beacon hospital was the first in Ireland to open a highly specialised post-Covid clinic that people can access via GP referral. The initial consultation is €225 and tests and therapies may be covered by health insurance.

What happens if you don’t have health insurance, and you are already struggling financially because you’ve been out of work?

Those who can afford it will pay, and the ones who can’t will suffer without support.

Data provided by the Department of Public Health Mid-West shows there have been 67,000 confirmed cases of Covid in my own county of Limerick to date. This figure will include people who caught Covid more than once, but it’s still likely to be thousands of cases of long Covid if you apply the estimate of 10% to 20%. 

That’s in Limerick alone, a county that includes some of the most deprived areas in the country. 

There is no dedicated long Covid clinic here yet.

Throughout the pandemic, I reported on massive efforts to mobilise research and resources. I know it’s possible, so I do not get the lack of urgency when it comes to assessing the full scale of a known impact of Covid. A HSE spokeswoman said it is working to establish “defined catchment areas” for access to each of the available long Covid clinics. The HSE is aware each of the sites has a waiting list and is “working closely with them to monitor these waiting lists going forward,” she added.

The spokeswoman declined to provide the approximate waiting time for accessing the available long Covid clinics, or the most recent numbers of those nationally waiting to access occupational therapy, physiotherapy, or mental health services.

“The HSE is currently examining how it can provide more precisely model the numbers of people affected by long Covid. An epidemiological survey is being planned in this regard, in addition to a patient register.”

“The HSE is also examining how best to access existing services in the community to support those with post [or] long Covid symptoms.”

So much of our pandemic approach has been focused on hospitalisations and death, much like our approach to the health system in general.

When will we start looking at things holistically?

How many people like me also got caught up in the ‘mild’ Omicron wave at Christmas, and sweated out their fever at home, never stepping foot inside an emergency department, no matter how severe their symptoms got? How many will be affected after the current wave?