Jo

Brief Outline:

Jo had been ill for a year before being diagnosed and being admitted to hospital with Covid in February 2021. It is unclear how much of her illness was an effect of her Covid infection. Jo spent two weeks on intensive care. In August 2021 she was at home with the support of a carer. Interviewed for the study August 2021.

Background:

Jo worked for an energy company, until she lost her job due to short term sickness early in 2020. She has been too ill to work. Jo lives alone. Ethnicity: White British.

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Onset symptoms/at home

Jo lost her job due to an undiagnosed sickness (not Covid) in January 2020 and felt less and less fit over time. Where she could do gardening and walking in January, by November 2020 she had “run out of juice” and was struggling even to get up the stairs. When she went to two shops at Christmas, she had to rest in between. She said: “Everything was exhausting”.

Social support was unavailable to her: both her area, as well as the area where her daughter lives were in Tier 4 of Covid regulations at the time, meaning that they could not visit each other. Jo was friends with both her neighbours, one of whom came by to help out when her exhaustion was at its worst. Jo has since fallen out with her and they have not been in touch since.

At the end of January 2021, Jo had not left her house for more than a month due to her fatigue. She was coughing continuously, but she did not think that this was cause for concern or even that this was affecting her breath, as she has had a cough for many years. She also did not think that talking would affect her breath, something she has since learned is not true.

Admission to hospital

When Jo called 111 about her increasing incontinence in early February, they told her to call back “when things got any worse”. At this point the other neighbour, who is herself clinically trained, told Jo that she did not care what 111 said, and that she would call an ambulance.

Jo spent 4 hours in A&E, where a doctor took her medical history. He initially did not write it down, and Jo had to tell it again, all of which cost her energy and breath. Her lips turned blue from oxygen deprivation. Her oxygen saturation was 60%. Jo was admitted to the general ward.

In the intensive care unit

Three days into her hospital admission, Jo was taken up to the intensive care unit (ICU). The ICU consisted of two parts: one “amber holding station” and one with “people who needed to be connected to machines”. Jo was in the latter, on her own, with one-to-one nursing. On this ward, her “ability to do something … suddenly evaporated”. Jo had various breathing masks on and was given antibiotics and steroids. Whilst Jo was not unconscious, she was not awake either: “You are in the world, but you are also dozing. It’s a waking sleep”. She lost a lot of muscle mass and strength, up until the point where she could not feed herself. Thankfully, this also improved again quickly.

Jo remembers the staff to be amazing. Jo relied on them for everything as “everything was inconvenient [and she] had to call on people to do something”. Jo set herself the challenge to remember names of the nurses. This allowed her to connect to those people who she saw repeatedly, and it was nice for them as well, to be recognised.

Whilst Jo was in ICU she saw spiritual presences by her bed, filled with light. She describes these as giving her company. “They were not sinister, but rather benign and supportive”. She did think it was weird seeing them at the time. From a friend who works in the same hospital ICU outreach Jo learned that this is a common phenomenon, that ICU patients see apparitions, and that this may have been the curtains around her bed.

The general ward

After two weeks of ICU, Jo was moved to a single room on a general ward. The ward was very different to ICU, because she no longer had one-to-one care. The ward was noisy. She comments: “If you’re not well, lively discussions stress you out a bit.” Jo went through a period of disorientation.

Jo was encouraged to do as much as possible by herself, but she could not always do it as she was so breathless. The bedpans were incredibly uncomfortable, except for when one particular nurse helped her. Pooing was so painful and difficult that Jo “named her whole bedpan family”. She tells me she finds it important to have a laugh about these things; it helps to get through it.

Although Jo has always had “bad sleeping patterns”, sleeping was even more difficult in hospital. Jo tried to sleep as little as possible during the day, at which she was not very successful. It felt like every time she was asleep, the physiotherapists came. Eventually she was given sleeping pills, which did work for two days, but they ceased to help her sleep after that.

As a form of recognition of what she had been through, it was helpful to hear her consultant say that she had “experienced a massive trauma”.

Diabetes and hospital food

Jo went into the hospital with diabetes 2, a condition she acquired from the steroid treatment for cancer ten years ago. This posed a difficulty to her now. Some nurse reminded her to think about her diabetes when ordering food, whereas other nurses said the most important thing for her was to eat, and that they would be in charge of controlling her insulin levels. Minding what she ordered was not easy, as the hospital menu seemed not to support sugar-free or even sugar-low foods: e.g., on the menu for breakfast there was bread with jam and honey, but nothing savoury like Marmite. Feeding herself was easier once the oxygen hood had come off.

Coping with symptoms now

For her breathing, it helps Jo to drink water, brush her teeth and play games or anything that distracts her from it. Previously, she had been treated for anxiety with cognitive behavioural therapy. This now helped her to recognise when something is and is not within her control. Her biggest take-away from this is the recognition that she can rely on herself to improve her health: she is part of the solution to her health problems.

Jo felt that she had control over her breathing and used it to calm herself down.

And, you know, one of the things that I found, I do have anxiety and I’ve done quite a lot of CBT where I’ve managed to overcome things that make me anxious. And one of the things that I do is, if it’s not in my control, stop worrying about it. Because that is the thing, that if it’s not in your control, then you need to just worry about things you can do stuff about.

And so, breathing is something I can do stuff about, but I just need to wait for my heartrate to drop. Because there’s no point in trying to do breathing, normal breathing while your heartrate is heading towards 130 because that’s just not going to work. So, you know, that whole kind of trying to get your breathing under control, it’s really a mental fight rather than a physical one for me. I’m guessing for anyone really.

And I think that’s the thing that I…that’s my biggest take-away from this whole situation is, you know, that I rely on myself to achieve improvements in my health and my stamina. But also, I am the solution to…you know, I can either decide to pant and breathe through my mouth or not, as the case may be.

Jo asked staff to get in touch with her sister when she was too breathless to do so herself.

I wasn’t really able to talk to my sister particularly because I would get out of breath too quickly and, you know, I just wanted the doctors to call her and stay in touch with her. And one of the staff was saying, well, this is actually the first thing on our patient charter that we aim to keep the family informed as much as possible. And I found that it was only if I was really on them that they actually remembered to make a call. Because my sister was having problems getting into the phone system and getting in touch with the ward or ICU. That was the…because, you know, it’s easier for the hospital to ring out on the off chance hopefully the person that they’re calling is available. But that was very frustrating I think for my sister, as well as for me.