“The Covid test was negative but two years later I have all the symptoms of a long Covid”
It is estimated that 380,000 people in Ireland have asthma – that’s one in 13 of the population with breathing problems of varying degrees.
Sthma Awareness Week runs from May 1st to 7th and this annual event aims to highlight the condition and what needs to be done to ensure people are getting the right treatment and their symptoms are managed properly. However, with Covid-19 still very prevalent, many people who have had the virus are suffering after-effects that have been made worse by their underlying asthma symptoms.
Susan Cunningham from Dublin has had asthma all her life and although it affected her in many ways, she had learned to live with it and was able to make sure it wasn’t causing too many problems. But after developing a respiratory illness right at the start of the pandemic, she was beset by breathing problems.
“I was diagnosed with asthma when I was two years old and growing up I had to be careful around sick people – because if I caught a cold it would flare up and I wouldn’t go to school until I recovered would have,” she says. “I never had to be hospitalized and my GP was able to keep a good eye on me and referred me to the ventilator team when needed.
“I wasn’t very athletic as a kid, but I got into it as I got older because I realized that exercise had a positive effect on my symptoms. I’ve felt like I have my condition well under control for a long time now and I know what to do when I’m feeling bad and how to get fit again after I’ve recovered. But on March 19, 2020, I woke up with some mild symptoms – headache, sore throat, chest tightness, and intermittent cough. I was taking acetaminophen and didn’t find it necessary to take extra doses of the inhaler. But the next day I contacted my GP and he was advised to self isolate and wait for a test to be on the safe side.
“I went for a walk that evening and started to feel very unwell and was struggling to get home – when I got worse over the weekend my GP asked for a ‘home’ Covid test as I couldn’t drive .”
“I went for a walk that evening and felt very unwell and was struggling to get home – when I got worse over the weekend my GP requested a ‘home’ Covid test as I couldn’t drive. But unfortunately, due to the chaos at the time (related to the pandemic) and the reclassification of testing requirements, I didn’t get tested until 20 days after my symptoms started.”
Although the 41-year-old believes she has Covid-19, the results were negative – she says because of the delay in testing. However, she was hospitalized with shortness of breath, palpitations, fatigue and reduced mobility – and now, two years later, her health has still not improved.
“I’m still suffering from the after-effects and at one point I counted about 40 different symptoms, some I experience on a daily basis,” she says. “I still struggle with cognitive, neurological, cardiovascular, gastrointestinal, vision and mobility issues – and have learned some coping mechanisms from the (asthma) community and both the Physio and OT teams at St James’s Hospital. I wouldn’t know what I would do without the support of my family, who fortunately live nearby.
“I am a civil servant and therefore it was easier for me to work remotely compared to people in other professions, but I can only do this with the support of my managers and my team. Some of our work processes have been changed to allow for blended working and some to allow me to do my work from home. You have been so good to me on the days when I can’t get out of bed or need frequent naps and rest and I go to the office when I can.
Susan Cunningham. Photo: Steve Humphreys
“But I feel like I need a caregiver or housekeeper as I am unable to take care of myself properly and struggle with housework and meal prep so I depend on takeaways and family, to keep my house in some form And because I’m so inactive and dependent on processed foods, I’ve gained a lot of weight, which is making my symptoms worse — it’s a vicious cycle knowing what foods and activities I need to keep my energy levels up increase but too tired to do anything.”
Trying to explain her illness to others has been one of the most difficult aspects of the past two years, and Susan says she’s just doing her best to get on with her new way of life. “I feel like I’m always justifying myself in front of people who see me on a good day or on a video or phone call and think I’m doing better than me,” she says.
“I saw a documentary last year about people living with long Covid and really resonated with one of them who said ‘when someone tells you you look good you don’t hear them trying to cheer you up , and you don’t feel any more human than the last time they saw you, all you hear is an accusation. So you then try to explain that today is actually a good day/hour or that you’re actually feeling pretty uncomfortable – and that definitely affects your relationship with those close to you.
“I’ve learned to accept that I feel different every day and will adjust my plans based on how I’m feeling. I get breathless and have palpitations after any physical exertion, even after getting dressed, but on a good day it passes fairly quickly and I can attend physio or walk the dogs – if I maintain a steady pace my symptoms and I stagnate can handle the activity as long as I get plenty of rest afterwards. But unfortunately there are more days when I am not able to do that.
“I also regularly experience relapses where I have to stop all physical activity and have additional rest until it subsides. If after a few weeks I don’t see any improvement I go back to my GP for a blood draw to see if there’s a solid cause – if I’m deficient great I’ll take the necessary meds and I’m fine better. But if not, it’s usually my overexertion and I need to rest until the relapse is over and then very slowly reintroduce exercise, starting with gentle stretches and no more.”
“Doctors have been very open with my prognosis – saying they are not sure what caused it and therefore cannot offer any certainty of recovery.”
The Dublin woman says that while her symptoms are debilitating, there are currently no answers as to why this happened to her and what her chances of recovery might be. “Doctors have been very open about my prognosis — saying they’re not sure what caused it and therefore can’t offer any certainty about recovery,” she says.
“I’m being treated for some symptoms and that’s all that can be done at this stage. I’m also one of those patients whose scans and tests come back clear with no obvious signs that correlate to my symptoms – so if you don’t know what’s causing an illness, how do you cure or alleviate it?
“But I’m open to new ideas about how to treat my disease. (Support from) the Asthma Society and recent appointments with a respiratory physiotherapist have definitely taught me some new skills – one that included setting an alarm to take my inhaler in the evenings, as by taking the dose regularly I am confident that I am get the most out of my medication.”
Susan says that while the last two years have been worrying for everyone, it’s important for anyone with underlying medical conditions to seek advice from their doctor if they’re still unwell after contracting Covid.
“For people with asthma, I would suggest talking to their GP about the symptoms and requesting a referral to their local respiratory nurse or team if they feel their symptoms are not under control,” she says.
“If you are waiting for a referral or feel like you cannot speak to your GP, the Asthma Society is a great resource as the website is full of useful information and also offers a personal service with an asthma nurse via a callback service and WhatsApp .
“Even if you have asthma, it’s important to have a treatment plan and to get to know your symptoms and your body so you know when to make an effort, when to take it easy and most importantly when to seek help from your GP.” or emergency room.
“This is particularly relevant as we approach World Asthma Day (May 3rd) and I encourage everyone who suffers from asthma to visit the Asthma Society website, whether you are an old hand like me, newly diagnosed or have children with asthma – you can get tips on general care as well as navigating life as Covid is still so widespread.
The Asthma Awareness Week will take place from May 1st to 7th. Visit asthma.ie to attend the Asthma and Allergy Conference on Thursday 5 May from 7pm to 8pm
If you have concerns about your asthma, call the Asthma Advice Number 1800 44 54 64 or contact the Asthma WhatsApp messaging service on 086 059 0132 to communicate in real time with an Asthma Nurse on all aspects of asthma management .
https://www.independent.ie/life/health-wellbeing/health-features/the-covid-test-was-negative-but-two-years-on-i-have-all-the-symptoms-of-long-covid-41583451.html “The Covid test was negative but two years later I have all the symptoms of a long Covid”