Jenni’s Story

Hi, I’m Jenni.

I’m a wife, a mum, a sister, a daughter, a friend & a nurse but I’m more than that.

I am a fighter, I am a warrior, I am a survivor. I’m a long hauler.

I have post covid 19 syndrome or long covid & depression & behind my smile, I fight a daily battle against my body to just function.

Before I got covid in 2020 I worked full time as a band 6 specialist nurse & ran a household, doing the cooking, cleaning & general management of the house. I used to spend time with friends & family & did 5k charity runs & had a positive outlook on life. Since getting covid I struggle to cook a meal in one go, I can’t stand for any length of time & I struggle to walk even the shortest of distances unaided without being in pain or experiencing breathlessness.

Long covid is an energy limiting chronic illness which means that every day is a juggling act of the energy available versus the energy required to do a task or get through the day. There are over 100 different symptoms of which I’ve had most of those 100 at one point in time. So, everyone’s experience of Long covid is different but one thing that is a constant is the constant fatigue experienced by sufferers.

Unless you have an energy limiting chronic illness or have a loved one that does then it’s a difficult thing to understand which is my point in doing this. I want to try & bring awareness of energy limiting chronic illness in a way that people can hopefully understand because the more awareness there is for these invisible illnesses, the more they can be seen.

If anyone has seen Apollo 13 then you’ll remember that in order to get home, they had to find a way to complete the sequence they needed in order to return with less energy than it would normally take. Well, that’s what having an energy limiting chronic illness is like.

For those that haven’t seen the film, think of it like having a bad case of the flu combined with a really bad hangover, one that means you swear you’ll never drink again & being heavily pregnant or having run a marathon or a race without properly training.

It’s like trying to walk through tar or quicksand or trying to climb Mount Everest just doing the simplest of things, but it doesn’t move in a straight line.

Just like riding a roller coaster there are highs & lows. It’s like the Duracell bunny advert except I’m not the one with the Duracell batteries, I’m one of the others. When I have energy things are easy but when my energy runs low then the smallest of things are hard going & the harder, I push to keep going, the quicker I use up that energy until I run out entirely & crash.

Like the bunnies in the advert, as their energy ran low, their ability to function properly also became worse, they slowed down, their actions became slower, they slowed their speech & missed some parts altogether. That’s what every day is like for me. When my fatigue levels are good then I can function normally but when my level of fatigue is high then it takes a lot more effort to do anything, my brain function slows & my memory becomes affected. Stringing a sentence together becomes harder & words get jumbled together, sometimes switching words for others without my noticing.

It’s a daily battle & quite funny at times but it’s also alarming & scary.

Imagine being in the middle of a conversation & suddenly forgetting the name of the person you’re talking to or the name of something you’re talking about. Think of it like visiting a foreign country where you can’t speak the language & they can’t speak your language, so you end up spending your time pointing & gesturing trying to make yourself understood.

The rollercoaster nature of the illness means that there are good days & bad days, days where I have the energy to socialise & days where I can’t even lift my arm to brush my hair & the fun part? You never know which day you’re going to wake up to. You can have weeks of good days, high energy days, days which make you feel like you’ve turned a corner & then a bad day will hit you & you’ll be knocked back to square one.

During the course of my illness, I have experienced over 100 different symptoms but those that cause me the most problems are breathlessness, brain fog & fatigue as well as heaviness in my limbs making them feel like lead weights.

The fatigue is there constantly no matter how many hours sleep I get or how much I rest & is made worse by exertion either physical or mental with simple tasks such as taking a shower or going to the supermarket requiring a rest afterwards & leaving me exhausted.

In healthcare we are supposed to treat each patient and colleague as an autonomous individual with Respect and dignity. We are supposed

to respect their aspirations and commitments in life, and seek to understand their priorities, needs, abilities and limits with compassion and care, taking what they have to say seriously.

We are supposed to have good communication and respond with humanity and kindness to each person’s pain, distress, anxiety or need. We are supposed to care and be compassionate, finding time for our colleagues and patients and searching for things we can do, however small, to give comfort and reassurance and improve people’s lives. We are taught to treat each person equally and fairly, and make sure nobody is excluded or left behind, to improve our patients and colleagues’ health and wellbeing, supporting them to keep mentally and physically well, to get better when ill and, when they cannot fully recover, to provide help and support to allow them to live as fulfilled a life as possible.

This has been the opposite of my experience.

Whilst some have been supportive and shown compassion, my overall treatment and experience of being a patient has made me feel alone, unwanted, uncared for, isolated, abandoned, like a nuisance or inconvenience and like I don’t matter. I have had to fight to be heard, fight to be believed, fight to be treated like an individual and It has left me feeling like I have to prove my illness, prove my worth and go against my better judgement and return to work before 100% fit or lose my job. I have presented suggestions and solutions at every stage but been met with resistance and a desire for unrealistic expectations. I have had to continually contact people to find out what is happening and sort out problems and issues when mistakes have occurred due to one department not communicating with another and no continuity in answers.

I am left with continuing long covid symptoms but additionally I have worsened depression, stress and anxiety which is in part caused by the lack of support, compassion, care & understanding Ive received during my illness.

What Covid Long Haulers are asking for isn’t a lot. We want long covid to be officially classified as a disability like similar post viral illnesses are which will allow certain protections & help to be made available, we want more public & professional understanding of the illness & its waxing & waning nature & better standardised guidelines across the board for employers with regards to the gradual phased return & adaptations required to allow long haulers to return to work.

Thank you for your time & I hope it’s given an insight into the daily battles we face, it is exhausting, infuriating & disheartening having to fight to be seen, fight to be heard & fight to be treated like a human being & not just a number.

Author: Alison Twycross PhD RN

Chair - Supporting Healthcare Heroes UK; Editor-in-Chief - Evidence Based Nursing; Former Deputy Dean and Professor of Children’s Nursing

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