Bacon fries and Nicky Campbell

“I started lockdown a week or so before everybody else, because I knew what was coming. I kind of risk assessed myself, as you do.”

Lily anticipated she would be in the shielded category. “In the UK, they categorise people who are at risk. There’s ‘vulnerable’, who’s anyone over 70 or anyone with an underlying medical condition. So I thought, well I’m definitely in that. But then, I got upgraded,” she laughs, “because they then introduced ‘shielded’ which is ‘extremely vulnerable’. I’m immunosuppressed and also on medication that puts me in the extremely at risk category.”

Because of this classification, she’s not allowed to leave the house at all. She can go in her garden, but has to make sure she’s at least two metres away from any neighbours.

“I haven’t left my house now for two months. Which is weird in some respects, but in others it’s not. People say ‘it must be so hard for you Lily, you must be climbing the walls’,” she says, her voice tinged with the slight Welsh accent of someone that’s not lived in Wales for years.

“I’m not, because in some ways it’s no different. I don’t go out at night, other than to choir on a Tuesday night, because I’m just too tired usually. I tend to have coffees or lunches with friends on my days off, but a lot of the time I’m on my own. My life of working stupid hours four days a week then recovering for three days then doing it all again hasn’t changed, the difference is I’m now not going into work for two days a week and just working from home the full four days.”

Lily, a self-confessed workaholic, works in a hospital and tells me how the first few weeks consisted of working ridiculously long days and not much else, until they got into a new rhythm of working. A very busy rhythm, which included a live interview with Nicky Campbell on Radio 5 Live one morning, for their ‘Hidden Heroes’ section, talking about wellbeing and wobble rooms in the NHS.

“I still get up, do my hair, do my makeup, get dressed; I need to have some normality. The routines I have medically, taking pills and so on, still carry on, no matter what’s going on outside.”

Lily usually chats to one of her closest friends every week, and lockdown hasn’t changed that, “ although it’s made us think about things like what will happen when we’re old and on our own, who’s going to look after us kind of conversations, and would anybody notice if we died over the weekend?” she laughs, her eyes crinkling shut, “I said yes they would, because we wouldn’t log into work on Monday.”

The first few weeks were the hardest and the biggest stress, Lily says, in terms of getting supplies and medication. She hasn’t seen any of the outside world since before lockdown started, and so hasn’t seen, with her own eyes, any of the chaos that everyone’s talking about.

“Nothing had changed before the start of lockdown, like supermarkets shelves were quite bare but not bad. I haven’t seen the quiet roads and find it surreal that you have to queue outside Tescos. I‘m like ‘well what does that look like?’; I’ve seen it on the news but in my little world I haven’t experienced it so I find it hard to believe.”

The biggest worry was not being able to get her medication. “I was due a prescription and medical supplies to be delivered and I didn’t know if I’d be able to get them. It caused me the biggest anxiety and I had several meltdowns in the first two weeks. I couldn’t get through to any GPs or pharmacists, on hold all the time, and they couldn’t deliver. A friend went down to collect the prescription and had to queue for two hours, only to then be told it wasn’t ready, I was mortified. It was just bedlam. Then one of my items didn’t seem to be available anywhere in the country, luckily my friend managed to find an independent pharmacist who happened to have some in stock.”

She sighs. Lily has Neuromyelitis optica (NMO), a central nervous system disorder that primarily affects the eye nerves (optic neuritis) and the spinal cord (myelitis). If Lily wasn’t able to get her medication she’d end up in hospital, as she takes certain drugs to prevent an NMO relapse, as well as ones to manage pain. “I really don’t want to end up in hospital; they’re not the places to be right now.”

“I hated suddenly having to rely on people. I still do, because I want to do it all myself. Eight weeks in and I still hate having to ask, and I try not to, but I get to the point where I’ve got to. The supermarkets are useless. They’re supposed to be doing all this stuff for the vulnerable and shielded, but they’re not in my experience. I can’t get an online shopping slot for love nor money. If I do manage to get one, half the stuff doesn’t arrive. I’ve gone from being totally independent and getting the basics like my own food and medication to,” she pauses, “well, not.”

She laughs as she tells me she classes ice cream and Prosecco as essential, but feels guilty asking her friends to get it. “Probably not a bad thing though, I don’t want to eat and drink too much and then have to leave the house and well, you know, roll out of it.”

“That’s another thing, because I’m not out and about, I’m not doing the exercise-the walking-as I normally would. So I was really concerned at the start of this that my legs would get deconditioned and I’d end up not being able to walk as well. NMO is NMO, COVID or not.”

She’s been walking the length of her bungalow, up and down, for exercise, and tells me it’s hard work. “I do five lengths of the house and I’m hanging; my legs are on fire and my glutes hurt. I’m knackered because I’m still working. I’m not going to come out of this toned,” she laughs. “I resent having to exercise just to maintain a level of fitness, but I have to keep mobile. I’ll never run-I’ve accepted that-although every so often when I’m drunk I’ll think ‘I’ll give it a go’,” she rolls her eyes and I laugh, “not a good idea. Then every so often I think ‘oh I’ll try jumping again,” she shakes her head, “not a good idea.”

According to the UK government, she’s still in lockdown until the 30th June, although Lily thinks it will be longer. “Until there’s a vaccination, the high risk categories won’t be safe,” she smiles, “I’m not rushing to go anywhere, and definitely nowhere where there’s loads of people. I’m going to be very anxious about going back to work, telling you now, working in a hospital. Nobody really knows yet what’s going to happen, but that doesn’t actually bother me, and I’ve not been counting down the days.”

It was over 10 years ago that Lily had her first NMO attack that landed her in a hospital bed with only a view of a wall for 6 months, “I can think of way worse places to be self-isolating,” she says, as she reflects on that time, “I’ve got my own house, a relative amount of independence, beautiful views, plenty of space, access to TV.”

I can tell she’s looking out the window at the view of the Yorkshire countryside, rolling green hills criss-crossed with hedges, as she continues, “back then, I didn’t know when I was going to come out of hospital, if ever, and I just dealt with it on a day-to-day basis, living each day with a routine of meds, lunch, dinner, cleaning, you know.”

“So nope, I’m not going anywhere, I’m staying in my little bubble. I’d already decided I wasn’t going abroad again anyway, and I can’t see me wanting to go on a bus or train again, or in any confined spaces. Yeah, I’ll stay in my bubble and become a recluse,” she laughs. “Ah you know, I have ups and down like everybody does, good days and bad. Yesterday wasn’t so good, I was knackered because I’d overdone it,” she giggles, “when the weather’s nice I overdo it; gardening and baking are the things that keep me sane. Some days I just want to cry, for no apparent reason. Have a cry, feel better, then get on with whatever’s next. My motto at work and in life now, is ‘go with the flow’.”

She’s missing people contact and having a hug, “a virtual hug just isn’t the same. You need that squeeze of physical touch and reassurance.”

She’s heartened at how the best in people has been brought out, not just in her network of friends but in everyone. Gestures of kindness are abundant, and we talk about how people are inherently kind and just want to help.

“One night there was a knock at my door, and there on the windowsill was a massive bag of monster munch crisps and several packs of bacon fries,” she throws her head back, laughing, ”I couldn’t believe it. Obviously I had to eat them all, in one go, because you have to. Bacon fries never tasted so good.”

Lily

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