Long Covid Patient Stories

Links to Patient Stories

L, female, aged 35, Dublin – The Financial Ramifications of Long Covid

It’s almost 3 years since I contracted Covid during an outbreak in a nursing home I worked in. As an asthmatic I would describe the first infection as a bad chest infection but little did I know my health would come crashing down 8 weeks later. This is when a fight I could never have imagined began and still continues to this day.

Firstly I did not have tax credits to claim illness benefits and Long Covid wasn’t recognised in 2020/2021. There were no financial supports and still aren’t for those of us suffering with Long Covid.

I worked hard my whole life and almost 10 years ago I managed to buy a home by myself close to all my family for my son and I. Fast forward to now, I am getting letters from the bank suggesting I sell my home as I am 12k in arrears.

The bank have tried to work with me but I had severe cognitive issues which meant I couldn’t hold a conversation without short term memory loss, forgetting who I was even on the phone to. I begged and pleaded with them to keep all communication in writing by email or post as I could not remember phone calls. They would not do this and unfortunately with how sick I was I missed payments.

I haven’t been able to return to work and have tried to get them to take a weekly direct debit from my social welfare payment but they said they could only do bi weekly which meant every two weeks I had no money to heat the house or feed myself.

I was turned away from the social welfare as I wasn’t entitled to additional income support that had just been offered to help with the cost of living. I couldn’t heat my home and needed heat with no body temp regulation thanks to Covid. I was told to just wait.

I’ve lost friends & family. I have asked for help and laid bare how desperate my life has become only for it to be used against me. I don’t ask for help anymore, I don’t know what’s going to happen to our home. I don’t know if I will ever get better. The Long Covid community on Twitter is the only thing that has kept me here and made me feel like I have some support behind me, this is my only hope in what looks like a grim future.

M, Female age,60s, Dublin – A fight to obtain social welfare supports

I’m in my 60s,I have caught COVID 19 three times. The first being March 2020, it has left me with ongoing chronic fatigue, cardiology, respiratory & neurological health issues. During 3 visits to A & E, x rays showed Covid in both my lungs.

The protocol for hospital admission was low oxygen, mine was consistently normal so despite being very ill I was deemed to be able to manage at home. Due to PCR testing rules, I wasn’t eligible for a PCR test. At the time I was self-employed, working full time in my busy creche, I played in a ukulele band with 35 others doing weekly gigs & was generally having the craic.

As the world went into lockdowns others with covid recovered & I couldn’t understand why I was still suffering. My GP was proactive and referred me to a respiratory consultant in St James hosp. After many tests I had sinus surgery to try to alleviate my breathlessness and chronic cough, to no avail. More tests followed and eventually the consultant told me he didn’t know what else to do. I heard of a post covid clinic in St James hospital, I didn’t meet the criteria for a referral, so I fought hard to get an appointment.
The consultant in the post covid clinic gave me many referrals & tests followed. Cardiology showed I have a high resting heart rate, ENT diagnosed hearing loss, rheumatology gave me the all clear, respiratory prescribed steroids, anti-biotics, inhalers & a nebuliser, neurology diagnosed a brain disorder & post covid migraine, psychotherapy diagnosed PTSD, OT diagnosed hand nerve damage, loss of feeling in my fingertips & loss of hand strength. I was also referred for two different types of rehabs but both programmes had to be stopped as I was too ill to take part. I took part in a fatigue management program which I found to be hugely beneficial. It was with great sadness I had to finish work & apply for invalidity pension. This was refused on my first application & granted on appeal. Unfortunately, I was unaware that they backdate a successful application from the date they receive the initial application form. I could have sent in the initial application followed by the receipts, consultant reports etc. Instead, I gathered everything first then sent it all in together, as a result I lost out on 8 weeks payments. This added to my distress of losing my old life. I was overwhelmed with my reality & grieving for the old efficient me!
Psychotherapy & anti-depressants brought me back from a scary dark place. I feel lucky as
unlike others I haven’t seen much gaslighting.

It can be a lonely place, but I have amazing family & friends & they have no problem pushing me if I need to use my wheelchair or my chariot as I like to call it. Some sufferers don’t live alone yet are on this journey alone. I try to take part in gigs, mostly miming & mimicking playing ukulele. I joined a Sister Shed & I do my best to go there once a week. Both activities get me away from my illness & I have huge support there too. I help with advocacy when I can & it’s so lovely to see a little of the old me shining through! I have learned great coping skills which I badly need some days. I am proactive in medical care & very aware how important self-care is. At the end of the day though, I miss me.

A, aged 44, Mayo – An insight into the failings of post Covid and Long Covid care in Ireland

I tested positive for Covid19 on 7th Dec 21 & my symptoms were instant; tiredness, hot sweats, cold shakes, loss of taste & smell nausea, disorientation, sensitivity to light & sound and terrible migraine.

This continued for a month until I ended up in hospital with shortness of breath on 30th Dec. I was discharged the following morning & told my chest x-ray was clear.

I continued to experience both this shortness of breath & palpitations until I eventually was given Holter a monitor by my Cardiologists nurse and told to wear it for 24hrs. Afterwards, I heard nothing more until a letter arrived from his office stating he had found nothing irregular from my tracking, all appeared in order.

I returned to work Feb 20th 22 for 3wks before going away on a planned city break to New York. I found the break hard going as there was a lot of walking and returned home completely shattered.

However I had to return to work which I did, until a dull pain started in my left shoulder.

This continued for about 2 days, it was worse when I was driving to & from work but on the morning of the 29th Mar it was so severe I had to call WestDoc and was admitted to Mayo General again with extreme pain down my left side with shortness of breath.

I ended up with bi-lateral pulmonary emboli on my lungs following a CT scan & I was started straight away on blood thinner injections. I stayed there for 4 days.

I was being treated as a Covid positive patient,

All patients were tested upon arrival and kept with Covid positive patients until result returned.

I later learned from a nurse that a clerical error had occurred whereby my negative Covid result was never added to my file so i was left in an Covid positive ward while extremely ill and vulnerable!

My experience was horrific once I was moved from the Covid assessment unit on to that Covid ward in Mayo General.

I left that hospital weak afraid & numb on April 2nd with discharge paperwork relating to a stroke as that was all the information the nurse could find on file.

I never had any form of follow-up from then on apart from my own GP checking in on my recovery.

I never felt so vulnerable as i was in those first few weeks, the fear of a recurrance & all the unexplained questions I had & no one to answer them. I found an Irish group online thrombosis.ie group & Ann Marie contacted me straight away.

She posted me out all the proper info documents and was available to chat & offer support. I went to my GP on a monthly basis as I was not reacting well to the medication and became anaemic I was bleeding 25/30 days a month & my body was completely shattered.

I attended a private cardiology assessment in the Galway Clinic in May as I was still having shortness of breath & palpitations had returned. At this stage I couldn’t walk any more then 1 to 2k max a week.

Thankfully my assessment was clear, my heart was not damaged bar the walls of my chest from the Pulmonary Emboli. I continued on my blood thinner meds until the perscription ceased in September 22.

In Aug my GP sent referral to the Haematology dept in the Galway Clinic, to the Long Covid centre in UGH & a private referral to the private Long Covid clinic in the Beacon.

I found the Long Covid group on Facebook & received amazing support. I learned I could self refer my case to Prof Lambert in the Mater and that is what I done.

I got an appointment within a few weeks of my request and attended him in January.

He completed a full health history, bloods, current symptoms & timelines.

He discussed my case and explained why this was happening to my body. For the first time I felt there was hope for me and my Covid recovery.

To this day I have not got a haematology appt from the Galway Clinic.

My Long Covid Appt arrived for February in UHG.

I attended this appt on 20th Feb 2023. Parking was horrific around the hospital. I walked from carpark 3 to the main door to be told by a volunteer that I had to make my way across to the infectious disease section which was across from car park 1 at the main entry along side the STI clinic.

I was handed a 5 page questionnaire to complete comparing pre & post Covid symptoms rating them 1 to 5 while I waited.

I was seen then by a Dr for less then 15mins who never opened my questionnaire, the Dr asked me what meds I was taking, told me they were happy with my blood work from bloods which I can only assume were those taken by my own GP back in August!

She listened to my breathing, and then said as I had “no ongoing lung or heart issues” i will be referred to an Occupational Therapist (OT) for support.

I had been waiting for this appt since Aug 22.

So 1hr and a half later (a wait too long for someone with profound exhaustion) I met an OT, a lovely girl by all accounts who said as my body is in fight or flight mode, I need to learn to set aside time mid day to stop and deep breathe for 10 mins to allow my body to self regulate.

I said to her, I’ve read ALOT and trialled a lot of treatments since Dec 21, such as guided meditations, yoga, sound therapy sessions and full body scans. I’ve recently commenced the Long Covid living well programme & have already completed the WRAP Wellbeing programme too.

I am still suffering to this day ongoing daily fatigue and both ongoing cognitive & sensory neurological issues.

She said “well you’re probably better briefed then I am so but take this booklet I have put together & have a read of it”

She said she’d be in touch to see how the techniques were going.

THIS IS ALL THE HELP I GOT AT THE GALWAY PUBLIC LC CLINIC

A huge contrast between this and my private appointment with Prof Jack Lambert in Mater clinic.

Needless to say there was no comparison, Prof Lambert met me as I am, and knew exactly what was happening in my body. He not only explained why this was happening but he also told me how he hopes to help me.

I walked out of the hospital Long Covid clinic in Galway that day and felt sad, thinking of all the walking wounded, the Long Covid sufferers awaiting appointments in the west.

I hope to god they are getting better help than what I was offered there.

Shame on the HSE and their tick box exercise for treatment plans & pathways.

Shame on our government for allowing us to continue to suffer & turn a blind eye to the aftercare of LC patients in the west of Ireland.

It is not good enough & it has to change

L, 30s, East Ireland – LC in Children and the Effect on Relationships

I have two children effected by long covid. They’d probably be considered moderately effected in terms of how severe their symptoms are.

It has been extremely difficult to say the least.

A part of our journey that I’ve found incredibly hard has been it’s effect on the relationships in our lives.

It has effected my relationship with my husband. As a parent of small children you often have so much on the to-do list every day, its hard to get time together as a couple.

As parents with two chronically ill children that problem is magnified by a hundred!

The children’s daily care is exhausting. Assessing their energy, have they slept? Are they tolerating a new supplement or medication they’ve started? Are they able for the short excursion to get out of the house that we had planned for? If so, has someone packed paracetamol, neurofen, other meds, Inhalers, epipens, blanket to so they can lie down if needed, sunglasses for bright light for my son’s sensitive eyes, snacks for when the blood sugar drops and they suddenly feel dreadful.

Then there is my relationships with my friends. As every LC patient/parent will no doubt say…

THEY JUST DON’T GET IT.

I understand that people can’t truly understand something until they’ve been through something similar but I don’t feel that many of them even TRY to understand our situation and how devastating it is.

Long Covid is not considered potentially fatal (though this is debatable). Because of this , regardless of how disabled your child has been made by it, people don’t seem to understand how grave the situation is.

They don’t seem to imagine how they might feel if their child could no longer live their normal daily life, school, homework out, go out playing with friends, holidays etc.

Then there are my relationships with my siblings. They don’t believe Covid is an issue anymore. They don’t dispute my children’s diagnosis, but their attitude is that the world has to move on.

We disagree constantly about Covid mitigations that I feel are needed still, to reduce transmission. I find it devastating that given my children’s health has been taken by Covid, they are so casual about it all now. They do not see the importance of masking in healthcare settings or the issues of clean air in classrooms as important. Why don’t they see that we need to spare other kids this same fate by avoiding as many Covid cases as we can?

It makes me feel utterly and entirely isolated, like I am very much fighting this battle alone.

My partner is an ally, he knows our children are very unwell but as the non-working parent their care is in my hands most of the time. It is up to me to be researching, reading, buying supplements making appointments, going to blood test appointments etc. I feel this is very common, that in many cases of Long Covid in children, the majority of the stress and burden or care is falling to the mothers

Relationships suffer hugely when Long Covid is in the picture and that has made me feel so alone and I’m so very very tired of feeling that way.

H, 40s, East of Ireland – Negative Experience with Doctor in Public Long-Covid Clinic

Background:

I contracted Covid in Sept 2020. After weeks of continued decline, I was referred to a Private Long Covid Clinic by my GP, where Long-Covid-Related-Cardiac-Issues were immediately identified. I was referred to a Rehabilitation Physio-Based Programme. I was removed after 3 weeks when it caused a severe relapse, from which I still haven’t recovered, over 2 years later. It was later recognised that CFS/ME rules often apply to Long Covid and the medical advice at the start to “push through” is dangerous and detrimental. My “very irregular” pulse was later flagged in my GP surgery and after an ECG, I was told to “immediately” see a cardiologist.

Symptoms:

I suffer from Chronic Fatigue Syndrome (CFS), paralysing Post Exertional Malaise (PEM), PoTS, Dysautonomia, Elevated Heart Rate, Irregular Heart Beat, Palpitations, Dysfunctional Breathing, Cognitive issues and much more. In addition to this I lost over 2 stone due to severe Nausea, Palpitations, Breathlessness and crippling Chest Pain upon eating. I was continuing to lose weight and this only rectified when my Cardiologist medicated me in 2022. Prior to contracting Covid, I was in my mid 30s, healthy, working a full-time demanding job, and physically fit.

My experience at the clinic

I somehow ended up in the Public Long Covid Clinic instead of the Private after the Rehab Programme failed and I wasn’t allowed to revert to the Private Consultant. After two wasted visits to the Public Clinic due to my records being awol, my third visit was with Dr X, who was visibly agitated from the very beginning of my appointment. Prior to the appointment, patients are required to fill out lengthy surveys. I had tried my best to complete them. These appointments are already extremely difficult for me, I travel for over an hour, and have to wait approximately 1-2 hours in a waiting room before being seen. Mental exercises such as this require a huge amount of effort. The combination of PoTS, Brain Fog and this type of concentration has the same effect on me as Motion Sickness. I was struggling before the appointment even began.

I had left two very similar questions unanswered as I couldn’t answer/rate; getting “less enjoyment from social activities” since I wasn’t physically capable of any and I was housebound, unable to have visitors and fully dependent on my parents. He told me I was “refusing treatment” by not answering these two questions even though I had explained why and had answered everything else. He refused to continue the consultation until I answered them.

At no point did he ask me any questions or discuss my symptoms or how I was managing them. He told me all my tests were normal. This was not true. The proof lay in my files, which were closed on his desk. At no point did he refer to them or even open them. I lost count of the number of times he said “I’m not saying you’re crazy”. It was my first actual appointment in the Public Clinic, 2 years into being disabled by this illness and my first time meeting him, yet, when I tried to speak about my most concerning issues and showed him a referral letter I had brought from my Cardiologist for respiratory tests, he dismissed it and refused to discuss the matter.

He did not want me to speak at this “consultation”. He was visibly frustrated throughout and kept rubbing his hands and his face and sighing whenever I spoke, interrupting me and cutting me off. He kept repeating and I quote “you have psychological issues. I can clearly see you have psychological issues”. My mother tried to speak up for me but he silenced her by speaking over her until she gave up.

I had a mild PoTS episode during our consultation (dizzy, weak, shaking, presyncope) but this annoyed him further and he kept sighing when I asked if I could lie down. Despite almost falling over when I stood up, he failed to help and instead, stormed out to get a BP monitor. He was visibly angry that my blood pressure had dropped and said this was the fault of the medication that I had been prescribed by a renowned Cardiologist.

My Cardiologist is held in very high regard across the medical community and I have regular checkups to review my condition and medication. Doctors in this very clinic have referred patients to her. She is treating me for PoTS, Dysautonomia and due to her correct concerns, I am now also attending a highly regarded Respiratory Specialist. He has prescribed further medication along with a CPap machine as my breathing rate was dropping very significantly at night and preventing enough oxygen getting to my brain (the result of the referral letter he ignored).

He then said that my medication was causing my illness, ignoring the timeline of my illness and symptom management. Although I am still extremely unwell, I have significant improvements with this medication, the most important of which, being able to eat properly.

He said it was extremely dangerous for me to be on medication and I needed to stop taking it immediately.

My Cardiologist later assured me that this instruction was “completely inappropriate and dangerous”. However, before I spoke to my cardiologist, I did follow his advice and stopped one of my heart medications, for fear of, again, being accused of refusing treatment – and was bedbound within 3 days.

He wasn’t in the room when the nurse took my BP and HR. I was only able to stand for 30 seconds but according to his report, I stood for 3 minutes and my heart rate dropped on standing and was lower than it has been in 3 years (even while sleeping). I was appalled to see that the report was factually incorrect and yet is now on my medical record. I have had numerous heart tests and I was referred to a Cardiology Physiotherapy Rehabilitation Programme which failed after causing a huge crash and proving, yet again, that my body is completely intolerant of excercise. It was discovered that one of my PoTS symptoms is a drop in blood pressure when my heart rate increases due to sitting/standing/movement. I.e. what angered him is in fact, a known symptom of my condition.

In concluding the appointment, the doctor said that he would contact both my Cardiologist and GP with his instructions regarding cessation of my medication and for counselling. He never contacted the cardiologist, but contacted my GP. We both agreed that counselling was neither necessary nor beneficial. I had asked to be referred to his colleague for a Dysfunctional Breathing Test but he didn’t do this.

It has taken me a long time to share this story. I have huge respect for those navigating the treatment of an illness we know so little about. I need to know that the people who treat me, respect me, my illness and my determination to get better in a constructive and supportive way. For all our sakes.

I’ve tried various medications, supplements and treatments. I’ve followed every doctor’s advice and followed up on every referral. I’ve done every test recommended and tried every drug prescribed. I had, in fact, tried counselling prior to this but within 3 weeks we ceased sessions when the counsellor and I agreed that it was detrimental to my health and neither beneficial or necessary. I’ve done the rehab, the at-home programmes, occupational therapy, speech therapy, holistic treatments, long covid yoga, meditation, cardiac rehabilitation. You name it, I’ve tried it. It’s not for want of trying. It’s for want of a cure that doesn’t yet exist.

I have found support in a beautiful group of women, all of whom have varying severities of Long Covid. We love each other but we also wish we didn’t know each other this way. Many of us are not physically capable of speaking up for ourselves, yet those who do are a silenced community. We should not be silenced by the very people who are supposed to help us. We will never give up hope for a cure, we just hope others won’t give up on us.