What It’s Like To Be A Keyworker With A Chronic Illness During The Coronavirus Pandemic

I am a medical keyworker in the UK and I am not in lockdown for the coronavirus outbreak. I still go to work every day and my job is essential. I am not frontline NHS – I am not a paramedic, a nurse, or an A&E worker. I am a clinic co-ordinator at a hospital and my job involves arranging acute care for patients that cannot wait until after the coronavirus lockdown is lifted.

I’m generally a pretty unhealthy person. I lost my vision in my right eye a year ago, due to a rare eye disease that absolutely no one has ever heard of and I’ve just been diagnosed with PCOS. I’m currently being investigated under the neurologist to find an explanation for my chronic fatigue – doctors have ruled out the diagnosis of multiple sclerosis for now, but are concerned about me having a neuromuscular condition. Most importantly to me, I have trigeminal neuralgia, a chronic pain condition that means I am in pain all the time and it is amplified by several other factors – changes in temperature, touching my face, brushing my teeth and stress.

Stress is something I have a lot of at the moment. When patients cancel their essential appointments because they are too scared to leave their house, I get quite upset. Patients will cry down the phone to me, because they know they are damaging their health by not attending the clinic, but would be risking their life if they did attend. It is a horrible decision to have to make. Some patients haven’t seen their families in weeks. Some of my patients have family members who are working directly with coronavirus patients in other hospitals and it breaks my heart to hear their stories. I have to keep in constant contact with the patients, to ensure their mental health is looked after, as well as their medical needs.

I have had to arrange around ten extra clinics over the last month, so we can space out appointments, meaning that patients won’t come into contact with other patients at the hospital, only necessary clinical staff. I have had to arrange for clinical staff to cancel their annual leave (something the government said should not happen – people need breaks to avoid burnout) and to travel around the country for the extra clinics more frequently than they would usually do. One of the necessary clinical members of staff has to sometimes drive 75 miles in a morning, for appointments that start before 8am. He can’t stay over the night before, as most hotels have closed and I’m sure he’d rather be sleeping safely in his own house anyway.

Before I start my working day, I go to work at the local supermarket at 7.30am, under NHS shopping hours. I can’t drive, so my mum takes me in her car – she is also a keyworker, but not in a medical field. She waits in the car, whilst I queue up. I still have to queue, even arriving at 7.15am and there are still lots of people in the supermarket during the NHS shopping hours – I saw around 20 people loading the pallets for online orders last time I went shopping. They looked absolutely exhausted and I suspect they had been working since the early hours. Waking up early to go shopping in the morning is taking its toll on my body my fatigue is really bad and my vision is worse than ever. I’m sure I need stronger glasses to help my good eye, but I obviously can’t get an opticians appointment.

I have muscle weakness, so carrying a basket or pushing a trolley is usually my husband’s job – I would always choose to get an online shopping order, but I am not classed as at risk by the government. If I log onto my usual online grocery shopping website, I get a pop up that I can’t have my shopping delivered as they are reserving slots for people they have deemed to be more at risk than me. I have several health problems that the NHS have diagnosed, but without the one big diagnosis on paper I am waiting for to pull it all together, I have to walk into shops like everyone else. The government has recommended to use online food delivery services, which I used to use, but now can’t. I come into contact with lots of people on a daily basis and now I am coming into contact with even more people in the supermarket. As some foods as limited to ‘two per person’, I have to go to the supermarket more often, as I also go shopping for my nan, who hasn’t been able to leave the house over the last few weeks.

I have to show my NHS badge on the way in and other NHS workers will still try to push their way to the front of the queue outside the shop. Some will walk up to the supermarket staff on the doors, show their NHS ID and try to walk straight in, before being sent to the back of the queue. Some people will walk down the queue demanding they should be able to go in first. I can’t imagine how busy the queues are for people who have to attend the usual opening hours.

My husband can work from home, but due to my limited vision – I am missing the central vision in one eye, with patchy, wavy vision across the rest of my field and my eyes get tired pretty quickly – I find it easier to work in my office. I would find my job difficult to complete effectively if I worked from home on my little laptop. It’s also easier to be in the office to see all the people I need to work with on a daily basis – it is a myth that everything can be done remotely, or by video chat, especially in a hospital setting.

My manager lives a hundred miles away, further down the country, so we video chat regularly. He is a surgeon and still has to go to clinics across the country and sees about 16 different patients every day. My other colleague lives the same distance away, so we use an internal messaging system and constant phone calls to communicate. I would love to be able to hop on a train to the Midlands for a meeting with her, but I will have to wait weeks before we can work together in person.

My grandad passed away last weekend, after a long battle with dementia and I haven’t been able to visit my nan. He needed round the clock care towards the end and was bedbound for about a week. He wouldn’t eat, but I still tried to get him his favourite foods from the supermarket the last time I went shopping for him. District nurses still went round to his house to care for him and I was so grateful that he didn’t have to go into a hospital where he would have been without his family during his last days. I wasn’t able to spend as much time with him as I wanted to at the end, because I didn’t want to risk spreading anything I may be carrying to my nan. We can’t have a proper funeral for him, because of the restrictions in place and we’re not even allowed flowers on top of his coffin.

I am really tired. Between getting up early in the mornings to go shopping and the late nights worrying about the patients and my family, I’m not getting as much sleep as I need. I’m still seeing work colleagues and I car share with my mum, because it must be safer than getting a taxi – some people at work have to travel by bus every day.

My face hurts all the time from the stress. When the lockdown is lifted, my job won’t get any easier, as all the patients who have cancelled over the last few weeks will want to attend and I will have more phonecalls than ever from people wanting me to make them an appointment. I will have to schedule and staff extra clinics for weeks and my job will definitely be affected for months.

Stay home, whenever you can ♡

Trigeminal Neuralgia

1 Comment Leave a comment

  1. So sorry to hear about your grandad. A bereavement is upsetting as it is without the funeral guidelines and all the extra things you have going on at work and home and with your health. You’re doing an amazing job with it all but I know that doesn’t make it any easier to do.
    I’ve recently gone back to work as a midwife after being off firstly with TN and other types of facial pain, and then the horrible side effects of huge doses of meds to get it back under control. It was like going back to a different world with the long gowns, visors and masks etc we have to wear. I’ve got a numbing spray for my face to help with the wearing of the masks but even at a lower dose of meds I still get really warm easily. The wards are already around 30 degrees so wearing sometimes full PPE for hours at a time is a challenge. We have isolation rooms for covid + women but are also in close proximity to women and and their bodily fluids, where the virus is present even if they are asymptomatic. We swab everyone who is admitted but we don’t know if they are + or – until the results are back hours later. I love my job though 🙂 and I’m glad to be back even if it is in the middle of a pandemic.

    Liked by 1 person

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