New Zealand may have dropped to alert level 3 but we’re basically still in lockdown, and being able to leave our house to socialise and travel still feels a million years away. Arwen Sommer asked five chronically ill people what it’s like to live inside for a lifetime and if they have any advice for the rest of us. 

Having a chronic illness myself, the transition to lockdown felt oddly smooth. I heard complaints left right and centre about not being able to visit friends, go shopping or go for long walks. But for me the only perceivable difference was not being able to order takeaways when I was too ill to cook. 

Being lucky enough to have the strategies to cope with being at home all day, I thought about all the others in a similar situation who might have some advice to share on how to avoid cabin fever.  

Here is what five chronically ill people had to say about it. 

In what ways is lockdown life similar to chronic illness life?

Being in lockdown limits what you can do, and that's the same with chronic mental health issues or chronic illness. You have to work around your limits. So I plan my weeks around when I know I'm likely to be in pain.

Anxiety and mental health can also limit when I'm able to go out and socialise. I refer to it as having quite a limited social battery. I have a certain amount of time that I can spend around people. Going to the shops can be quite stressful, and I suppose that's how a lot of people are feeling now. People are now living with a more comparable level of stress to how I'm usually feeling which is like, okay, welcome to my life. I just use the same strategies that I would use every day.

Any advice for people who are struggling with the lockdown?

Before lockdown was announced, I had the idea of creating a zine full of advice and entertainment recommendations people could access digitally, to take their mind off what was going on and to keep themselves entertained while they were stuck at home. I synthesised my own experiences into general advice that other people could use, and I've since produced a second issue with more specific lockdown advice. 

Find a project, but be kind to yourself, we live in unprecedented times. You're not going to be productive all day every day. You know you're living with unusual amounts of stress. Everything is different and changeable. So just take every day as it comes, and do things for you, do things that you enjoy.

In what ways is lockdown life similar to chronic illness life?

Feeling limited, not being able to go out as often, not being able to do all the things I want to do. Having to put a lot of energy into keeping my immune system healthy and avoiding contact with other people and washing my hands a lot just and generally looking after my body. I can't really go to the supermarket anyway. It takes so much energy, and it's very overstimulating, so not a huge amount has changed.

Any advice for people who are struggling with the lockdown?

I'm very, very lucky to be overly motivated, really busy and hyperactive a lot of the time. So I tend to push myself to get a lot done. I create tasks for myself, so I never get bored. I always have 10 art projects and a few gardening projects going on and a handful of meals that I'm craving that I want to make. I write those things down as they come up. If I think “oh, I want to do that” I write it down straight away. And then if I'm ever feeling at a loose end or I need a distraction, I just consult the list and decide what's most pressing, what do I want to do? That helps me keep a lot of structure. 

In what ways is lockdown life similar to chronic illness life?

It's almost exactly the same. When I got really sick last year, I was in hospital for four weeks. At that time, I couldn't even leave the bed because I couldn't walk. You go through the denial stage where you just want to hide from it, and you don't want to face that you're going to have to adapt. It's been like the first week of lockdown. It's just small steps to set up your routine again and then you build up from there. This week I feel quite confident again. But initially, I just had to be really kind to myself and do small steps to encourage myself.

Any advice for people who are struggling with the lockdown?

Break it down to the micro-level. I always take one day at a time now since getting sick, and it's really helped for lockdown. But on my really tough days, I will break it down to the hour. I just write everything down I have to do. And then I'll tick them off, and I'll just focus on that one task. Even on my really overwhelmed days, I'll have breakfast. And I literally tick it off, and it sounds so stupid, but it's actually so helpful because you’re like, “Okay if I just break it down to this one thing I can do that if I just have to get out of bed and take a shower, that's not too bad”. 

If you think in the macro, what you're gonna do for that week or that month or even that whole day, then you're like, “Oh, crap, like, I don't think I can get out of bed, I just want to hide under the covers”.

In what ways is lockdown life similar to chronic illness life?

I don't leave the house, I avoid people when I go to the supermarket. That's pretty much it. Nothing has changed.

What has changed for you since the lockdown?

Anxiety has gone up, so have panic attacks. Every time I want to go to the supermarket, I have all of the anxious thoughts I usually have about going. Now I have all of these other thoughts that are like “Actually like the government has said so”, then I have a panic attack about that. They're like “don't be stressed”, and I'm like, you are my stress. 

Any advice for people who are struggling with the lockdown?

I try my hardest to clean, I use cleaning as the thing that I can do to pass by time. But I always try not to do too much cleaning, in case I don't have things to clean the next day. Getting into hobbies really helps. I've seen a lot of people doing TikTok videos. I'm sure that passes the time. I paint, that's technically my coping mechanism for my illness. 

In what ways is lockdown life similar to chronic illness life?

As someone who has gone long stints of time unemployed because of my illnesses, I'm pretty used to spending time at home. Reading and connecting with friends online is how I already connect with friends. I'm quite happy in my home because I've already made it into a comfortable space to spend a lot of time in.

What has changed for you since the lockdown?

Mostly my life hasn't changed at all. I think the main thing is having everyone else at home is something I'm not used to. I'm used to spending a lot of time at home by myself. So navigating having four people at home and just keeping our boundaries and finding little nooks of introvert recharge time when you're around people 24/7 has been good. Definitely carving out time for myself is still really important. So keeping in mind that I still have those needs for personal bubble time and going to my room or going to a different room and putting my headphones on and zoning out for a while.

Any advice for people who are struggling with the lockdown?

I think it's really important to make the space you're spending time in comfortable for yourself. Whether your living room has become your office, it's important to keep it tidy, keep it clean, just like you would in your daily life at work. I also think it's super important to stick to a routine where you're still waking up around the same time every day and having a shower, brushing your teeth, having breakfast, whatever you would do on a daily work basis. Keep doing that, even if your commute is now from your bedroom to your dining room. 

I know that it’s important for me because I always feel worse if I'm just like, “wow, I've worn the same pyjamas for three days and I haven't showered”. That's really awful for my mental health, personally. Have a shower every day, change your clothes, even if you're going to spend more time in your bedroom, keep your window open if you can, and maybe print out some pictures of your friends and put them up as a reminder that this is really temporary for a lot of people. Some of us just live like this forever.