In the March|April edition, we spotlight the lingering and devastating impact of the pandemic, five years on
Irish triathlete Gráinne Kelly contracted Covid-19 in September 2020, which later developed into Long Covid. Over the past five years, she has endured agonising symptoms and loneliness, saying that she has been made to feel gaslit and abandoned.
Here is her story.
My name is Gráinne, now 35, born and raised in Dublin. From the very start I was obsessed with sport; football being my first love, I even had trials for Ireland at 16/17. I always visualised myself achieving something out of the ordinary in sport, I just was not sure which sport it would be. I had a natural gravitation to it, between football, Irish dancing, taekwondo, swimming, cycling and running, In my mid 20s, I started to dabble in triathlon – having competed nationally in swimming, I wanted to try make it a bit more challenging and exciting. I was working as a graphic/product designer for an American company at the time; it was an unhealthy work environment and I found myself not truly happy with my work life. I felt I could be happier and thought that life is too short to spend most of your time in an environment that is not good for your mental health. I stepped away from the corporate job and decided to take time to re-focus. I really thought long and hard about what I truly enjoyed and what gave me purpose to wake up in the morning, which was my love for sport, being outside, cycling and running in the open air and setting goals.
In 2017/2018, I retrained as a sports massage injury therapist with the plan to set up my own business. This would give me the flexibility to train more consistently and adapt my hours around training for nationals and other triathlon races. Come 2019, I was with a fantastic group and coaching team and I felt like I was around a solid group of people that wanted to work hard and race with the best. I had great contacts in swimming and was due to start training with another athlete locally so I wouldn’t have to swim solo anymore. It was all coming together nicely. I was only just tapping into my potential; I was finally in a good set-up that I felt I could develop and thrive in. I had developed a great routine of training with the coach; generally, I was doing three to four swims, three to four cycle sessions and three runs (all with a mixture of aerobic, speed work and drills) at least two gym sessions and one rest day a week. Life was exciting and busy.
Time warp
In 2020 I had partnered with a local physiotherapy clinic, and I was opening my own space as a sports massage therapist. I was so proud of myself for taking the leap of faith. One week into starting out, Ireland was requested by the government to go into a shut down due to Covid-19. Any business considered not to be a necessity was to close until further notice. I just told myself to use the time to keep working on myself, to focus on the things I could improve and adapt. Ireland had the best summers in lockdown; it was a gift during such uncertain times. I set up my own gym out the back, I had a turbo and I was literally training like a fulltime athlete. I was still only considered an age group athlete with aspirations to win nationals and so on, so I did not have access to the pools but as soon as the restrictions lifted, I was swimming in the sea or when the baths opened in Clontarf, I was there first thing in the mornings. I will never miss the wetsuit swims in freezing February/ March swimming until you literally cannot feel your face anymore!
When the Covid-19 outbreak happened, I did not at first worry so much for myself. I was more concerned for my mam, who has had heart issues in the past, and I worried for my father who is in full-time care. I felt I was incredibly fit and healthy; I never drank or smoked, and I figured that yes, I will take all the precautions, but I should be okay. How naïve I was. My first Covid infection in September 2020 was frightening and such a stark contrast from anyone else I knew who had contracted it in my family. I was incredibly sick with difficulty breathing, chronic pain all over my body especially my back, and my heartrate was affected so much. I could not stand up without feeling faint or nauseous. I was sent to hospital with a suspected blood clot with major difficulty breathing and being unable to stand upright. At this stage I was about 14 days post infection and I was spiking a temperature of 38/39 and feeling like I was getting worse as opposed to better.
The complete exhaustion was like I had not slept for weeks; I would sleep for 14 hours and more, but it just made no difference. I had to sit in the shower or when trying to do anything. Drying my hair was not possible; the blood would just drain from my arms. I could not walk up the stairs without my legs feeling full of lactic and feeling breathless, my heartrate would go through the roof. I would literally start seeing black spots. It took such a long time to walk without feeling faint. After a few weeks, I thought the symptoms were starting to ease.
Chronic symptoms
Myself and the coach tried to rebuild my training with a very graded approach. Slow and steady it seemed like it was easing, and my numbers were coming back. Unfortunately, come February it was like I had Covid all over again; the symptoms were back but ten times worse and more debilitating. Blood tests alongside other medical tests gave no answers, only that they felt I had what they are now calling Long Covid. That year became a vicious cycle of struggling to get out of bed with chronic symptoms. My gut was badly affected, I struggled so much to digest food, my stomach was swelling so much, I had blisters on my tongue and mouth, skin breakouts, hair loss. I would wake with horrendous nausea and motion sickness. Every part of my body ached, to the point I could not wear a bra or anything tight, my spine felt like someone left a needle in it. How was this the case? How do you go from being able to train three times a day, from being able to cycle five hours on a Saturday or running 10/15km on a Sunday, to this? I get emotional just even thinking of how unwell I really was. It was torture from the moment you woke until the moment you went asleep, if you could sleep.
I was referred by my GP to a respiratory specialist at first as there were no Long Covid clinics set up at that point (2020/2021). I waited months for the appointment in Connolly Hospital. I had hoped to get some insight as to what was happening with my body and how to manage or treat the symptoms. I counted down the months and weeks to the appointment, only to sit there in front of the specialist and for him to tell me “maybe you should accept this is your life now”.
I literally cried walking out from that appointment. I was 30-31 years of age and barely able to shower without fainting, struggling to intake food and literally having to go from the sofa to bed and bed to sofa. I just felt like this cannot be happening. Nearly a year to the date, I contracted Covid again despite living like a hermit. I pleaded with my GP and the hospital doctor to get Paxlovid [anti viral Covid medicine] and they refused. The following weeks and months are a blur; the second infection affected me so much more on a neurological level. My speech, swallow, cognitive function was massively affected. I was struggling to speak clearly, typing messages that would not come out the way I would try say them in my brain, and my memory was horrendous. I kept forgetting what I was trying to say, forgetting what I was doing, putting things in the wrong places, losing direction. I had two near misses of being hit by a car after looking in the wrong direction.
During these two years, I would have short periods where the symptoms would ease and I would think you are getting better. I would be able to go for walks or try to swim or cycle, only to have horrendous crashes (what we call them); horrendous episodes where the symptoms would all come back at once, and sometimes new ones. It was like a tease; someone waving your old life in front of you and using it against you if you took a piece of it.
I remember trying to swim like I always did with the group I used to swim with. I got so disorientated when tumble turning, I ended up smacking into one of the other swimmers kicking off the complete wrong way, I have swam for years, competed nationally, I know how to lead a lane and swim with a group. I let it slide thinking it was a lapse of concentration. No – two minutes later it happened again, so much so that I gave myself whiplash. I got out of that pool that day and sat on the bench in the changing room just crying; the complete sense of loss, loss of self, anger at my body and complete numbness to not knowing what to do, who to go to and how to change this. My brain was all over the place; I had sensitivity to light, vertigo, tinnitus, inability to concentrate or focus, headaches and constant pressure in my head. It was like someone was shaking my brain literally inside my skull.
Hidden pain
One of the hardest things about this illness is the complete lack of understanding and support in navigating such a debilitating illness. You are constantly tired, in pain and suffering bizarre symptoms daily. You do the resting, the pacing, avoid food/drink that could cause flare ups, reduce stress to the best of your ability and you can still be in a hole of horrendous symptoms. Then suddenly you feel okay: am I getting better? Can I afford to go for a walk, or to my friend’s wedding or even simply shower or get the shopping? That’s how limiting it was at the start. It might last for a few days or even weeks if you’re lucky and then, bang – you wake up feeling horrendous again, black eyes, white-as-a-ghost face, high heartrate and chronic pain all back. You literally feel poisoned.
You give up going to the GP because they have no answers. The doctors ask are you stressed or anxious or recommend anti-depressants but there’s not a single suggestion to the actual symptoms you are experiencing. If you break your arm, you get a scan, they access your break, you get a diagnosis, they cast or brace it and you are giving a care plan with an estimation of when it should be healed by. There is no such thing for Long Covid. That is very hard to deal with; day-to-day not knowing the outcome or for how long this will last.
I advocated for the treatment of Long Covid. Right from the beginning, I was open about the severity of symptoms and the effects it can have “even” on young, healthy people. I spoke and represented as a Long Covid sufferer at the Dáil, protesting for access to care and support for people with Long Covid. It took me three-and-a-half years to get access to a Long Covid clinic and I live in Dublin, what does that say for the people that do not live in catchments close to the hospitals that actually have a Long Covid clinic? When at my worst I applied for illness benefit, only to be denied and told I could just do another job. The complete ignorance of Ireland’s systems in place…I pleaded for medical and financial support across the media, doctors and the government, not just for me but for the thousands of sufferers across Ireland, but we got nothing.
The care plan in place at this very moment is already four-five years out of date, with zero patient participation involvement (PPI). It is not fit for purpose and is a serious inefficient/ineffective approach to the symptoms patients are suffering, alongside an incredible waste to what little funds are actually being dedicated to the clinics. Little to no hospitals have recorded data or developed research programs in Ireland to actually tackle the severity of this, yet people are still contracting Covid and in turn more people are developing Long Covid when we have not even healed the ones infected from the very first outbreak.
Ongoing struggle
I cannot believe it will be five years come this September for me. I cannot believe I am still here to even talk about it. These past four plus years have been hell. I have never felt so lost, disregarded and completely broken. This illness steals so much from people. When we went into a lockdown, we had to isolate for one another, we had to close our businesses for one another, we had to wear masks to protect ourselves and one another, we were advised to take vaccines to protect ourselves and reduce pressure on the health system. Since Ireland opened up again, it’s as though Covid just magically disappeared. I would wish that to be true, but no. So many people are now living a horrendous quality of life with these debilitating symptoms.
It is incredibly difficult to navigate a chronic illness in a world you feel you do not belong in anymore.
I completely lost my sense of self, purpose and quality of life. I could no longer work full-time; I could not exercise never mind compete and I could barely just get through the day. The effects of Long Covid massively effected my mental health; the lack of understanding from people and medical staff made me feel so isolated. When the symptoms were at their worst, I questioned what was the point of me being here, how can I keep repeating this cycle, when will it end or will I ever get better? With no efforts of our hospitals changing their approach or actually doing effective or efficient research, it diminishes your hope for a successful care plan or treatment.
To be medically gaslit or dismissed has been a common occurrence. If they didn’t experience it or know the answer then it had to be me; I had to be doing something wrong. Maybe I am just an anxious person, or maybe I just had to accept this was my life now. It is incredibly difficult to navigate a chronic illness in a world you feel you do not belong in anymore. I found it so challenging to do things I used to find normal. Busy enclosed environments with poor ventilation still give me anxiety, I dread hospital appointments and not knowing am I going to be treated for the illness or left walking out feeling like it was a waste of six months to a year waiting only to be demoralised or dismissed.
Outside of the physical effects, there’s the impact the symptoms have on your mental health. The effect long Covid has on your overall life holistically is something I don’t know if I will ever be able to get people to comprehend. I was an aspiring athlete before this. As soon as I could no longer swim, cycle or run I never saw or heard from those people I used to train with anymore. People’s lives move on, but you’re still stuck. I used to be a designer and business owner…. where is that now? We attach so much of our identity to the things we do and when we can no longer do that, who are we?
I stopped going out a lot over the past four years. One because I felt too unwell to, and also because it became too hard or upsetting to. I physically looked unwell, if I bumped into people, I knew they would ask was I back racing; was I not bothered or motivated to anymore? Or had I tried these vitamins or supplements? They would say they got Covid but they were grand – “you’ll be better in a few days, just rest”. Or there are the very difficult conversations around the people who don’t believe Covid is a thing; “you must have got the vaccine”…despite me getting Covid and developing Long Covid before any vaccine was distributed for my age group. All of which is too exhausting for someone who has very little energy left as it is. It feels like you have to constantly explain yourself.
Some people even feel it is appropriate and that they are entitled to ask why you are wearing a mask. Imagine having this very same mindset towards someone wearing a seatbelt, or someone wearing a helmet on a bike or a surgeon wearing gloves in surgery. Sometimes I really question is it the illness that gives you PTSD, or how people treat a person with an illness. For the days you make a big effort to seem well, you rest days before hand in preparation, you get dressed up, put some make up on just to be at a family function and they say you don’t look sick; sure there’s nothing wrong with you. Imagine saying that to someone with MS or cancer or any other chronic illness. We are very much in a world that if the person themselves has not experienced it, cannot physically see it or it does not affect them, then it must not be real or exist. It’s frustrating and sad to think what this country went through in the last five years; we seem to have learned very little.
Grieving process
Your relationships are not invincible to this illness. Your circle definitely becomes smaller and more meaningful, we shall say. It’s a grieving process when you realise the people you once thought of as friends never call or knock on the door. This is it; life still goes on, yet you are stuck. There’s also the immense guilt you feel when you cannot contribute financially or be financially independent; I really struggled with this. In a partnership, the effect it has on you even intimately is so upsetting; you are in chronic pain all the time, your hormones are on the floor, you feel like a shell of a person
Your hair is falling out, you are losing or gaining weight, the nausea and exhaustion is endless. How is one supposed to be able to be in a loving relationship if you no longer even recognise or love yourself anymore? You genuinely feel guilt for putting this on them…you don’t have a choice in the matter, but they can at least escape it. This is only a glimpse of in the mind of someone suffering with a chronic illness, and mentally how can it not affect you.
When I graduated from college with my honours degree in Graphic Design or retrained in Sports Massage Therapy, I could visualise myself doing it; when I trained day in day out, month after month, I could visualise myself racing. I visualised myself achieving goals I had set. I would say, “let’s see how far you can go with this, let’s see how good you can get”. I liked to think I would get married and start a family. After the Covid infection and when the symptoms never left, I could no longer visualise anything. I was just existing and no longer living.
Change is needed
Last May, after years of back and forth, I finally felt like my body was starting to recover and responding well to physical rehab. At this point, I still had not been given access to the Long Covid Clinic. For such a long time, I have tried so many different graded approaches to enable my body to heal. I do not believe there is one single approach for people to heal from this as everyone’s body is different and was capable of different things prior to getting infected. However, I do believe people can fully heal from this, and people have. I feel my experience would not have been so traumatic or as long and difficult if our government and health system actually took the necessary measures in place to help prevent contraction of Covid, if they actually listened and learned from the patients, suffers and those who have healed from Long Covid and put a more effective, accessible care plan in place.
Thankfully I can say I am recovering from Long Covid, but I still have a way to go to heal from the illness itself. I finally got into the Long Covid Clinic during the summer, ironically, they said I have done most of the hard work… I have found the physical and psychotherapy extremely helpful but I needed it right from the beginning. Imagine the outcome if it had of been accessible right from the start. I have a journey ahead of me to rebuild and redirect my career and learn what normal life is like again. I am very grateful to be improving, but after four+ years of your life being on hold, I can’t help but feel like I am starting from scratch.
Therapy will be my greatest ammunition in this. It has been such a traumatic few years feeling like I was a spectator; I finally feel like I can participate in my own life again without horrendous repercussions. The sheer joy of not having to worry if I exert myself too much, will I end up sick for weeks or months. That is not the case as often anymore. I hope by this summer I will be fully back to myself, and I will be forever proud of myself for refusing to give up. For showing up day after day no matter how bad I felt. Each day we live on this earth is an opportunity to heal and change our outcome. I am so grateful for the tenacity and stubbornness that sport has instilled in me. Sport and participating taught me so much about my body over the years; my body awareness and capabilities, I strongly believe this enabled me to develop the ability to heal and rehabilitate it.
I am so grateful to Lee at The Nadura Clinic, they have been so supportive and helped me navigate healing right from the beginning with more specific and accurate testing. My acupuncturist Steve Coughlan, a beautiful soul who truly cared and helped so much, practitioners who reached out at my darkest time and have been there all the way, educating themselves because they want to learn and they want to see their patients heal. I am grateful to Long Covid Advocacy Ireland. LCAI is a Long Covid Advocacy group in Ireland set up by sufferers of Long Covid. To this day they are still fighting for the basic of precautions and access to appropriate and effective care.
It is hard not to feel such anger for how much I feel towards our government and health system as it continues to fail the thousands of people suffering; when there is still no Long Covid facilities for children and teenagers. Ireland can do better and the public of Ireland deserve so much better. Our government should want to help and support these people in healing. They should be making every effort to enable people back to a healthy quality of life so that they can attend education, work or support their families. These are basic human rights. I felt abandoned, Long Covid patients feel abandoned.
For resources and support, visit longcovidadvocacyireland.com. Pick up the March|April issue of Irish Country Magazine for the full feature shining a light on life post-Covid.
