I was chronically ill for over five years. Here’s how to survive isolation
Jenny Brownlees became suddenly and debilitatingly ill with ME at 16. For the next five years, she was housebound and confined mostly to bed. Here, she shares a few things she found comfort in...
By Jenny Brownlees
When I was sixteen, I became suddenly and debilitating unwell with ME – a condition which causes overwhelming fatigue that is not improved by rest. (More information here). Unbeknownst to me, this was to last for over five years, with the first two to three being the worst. I was mostly confined to bed, often in a dark room and later housebound for much longer.
While I’m now out the other side of what was an awful period of my life, I find myself again unexpectedly confined to my house. As someone who has been here before, I thought I’d share with you a few things I found comfort in.
The perhaps only positive factor of this pandemic, apart from the realisation for many of the life-dependent tasks our incredible key workers provide on a daily basis, is that we’re all experiencing the country’s lockdown at the same time.
Though I acknowledge many factors make lockdown an easier experience for some more than others – we are at least all in a somewhat similar boat. It’s a well-acknowledged truth that comparison is the thief of joy, and I sadly became ill at a time when my friends were going away to university, in the same year Facebook went mainstream.
Seeing daily photos of their wild nights out whilst I barely made it into the shower was a difficult dose of my (many) pills to swallow. It’s basic human nature to compare ourselves to others, we’re a social species after all and I have observed many people giving themselves a hard time, comparing their lockdown experience to others.
Why has this person done four HIIT workouts and you’re still in pyjamas? Why is that parent the living embodiment of Mary Poppins whilst you’re struggling to get your kids to stop screaming for three minutes?
It’s a well-acknowledged truth that comparison is the thief of joy, and I sadly became ill at a time when my friends were going away to university, in the same year Facebook went mainstream.”
I’ll give you some advice right now – stop it. Comparison will get you nowhere and further, no one really knows the reality behind the social media updates.
Whilst we’re at it – no, you don’t have to create a masterpiece in this time either. Shakespeare very well might have written King Lear when quarantined in the time of the bubonic plague, but he didn’t have Netflix – so who’s the real winner here?
If all you do is get through, that’s perfectly fine – nay, wonderful. There will be good days and bad throughout, we have never dealt a situation like this before – there’s no perfect way to #boss self-isolating.
Feel safe in the knowledge that you’re helping the world and your fellow humans by staying at home, so give yourself a pat on the back.
In terms of engaging in an online world, it is very much a personal choice. If you think turning off your phone or deleting your apps will help you, do it. In my own experience, when comparing the upsides with the down, looking at it from Both Sides Now à la Joni Mitchell – I’d conclude that being active online helped me.
When social media is good, it’s really good. With this in mind, I’m going to share a few things that helped me through, and round up ways the internet is helping make this lockdown period even a touch more enjoyable. Whilst my situation was different to lockdown, I, unfortunately, couldn’t partake in a lot of the activities many are suggesting from home, thanks to near-constant pain and exhaustion that came from a simple but necessary task like showering or eating.
Strangely, what I came to loathe most aside from the physical restrictions was that ME badly affected my cognitive ability – meaning reading, listening to the radio or watching a film was often exhausting in itself.
One of my lowest days was not missing my last day of high school, friends birthdays or nights out, but staring at Countdown from bed realising I couldn’t even muster my mushed-up, previously well-working brain to construct a three-letter word when I’m pretty sure the word ‘cat’ was already spelled out. A real low point.
This caused me to get creative, e.g. instead of reading myself, I asked my boyfriend read to me, like a sickly Beth from Little Women. Sometimes when I look back I wonder how I did get through, in pain, stuck in a darkened room in those early days. The only answer I can come up with is that you just do. I also think the brain, in survival mode, blocks out many of the distressing moments.
That said, here are some of the things I did dabble in when I could. I’d advise writing out a list on pen and paper, with a variety of ideas and activities so you can choose them day-to-day, as you feel. Some days you might want to do yoga, some days you might want to stare at a wall and curse the world.
Music can have such a cathartic effect and listening to uplifting songs became a daily ritual of mine. Much like film and TV which I’ll discuss imminently, music can lead you down a wonderful rabbit hole. I enjoyed discovering new artists, working my way through bands back catalogues, reading about their lives and influences. I tried to focus on cheerful tunes that made me happy, Spotify have an abundance of uplifting playlists, as does YouTube – so pop those headphones in and forget about the world for five minutes
I’m a big fan of the humble voice-note. Since my friends were mostly away at uni or working, I’d use voicenotes to leave them merry messages. When a phone call isn’t always possible, chatting away back and forth in little snippets is a fun, quick way to connect with others – a mood-booster in itself. Go through your contacts and tell those closest to you that you miss them and hope they’re staying well. It might just brighten their day.
I ended up teaching myself DSLR photography from books, YouTube tutorials and a lot of practise – but I had a whole lotta time spare. However, the cameras on our phones are of such good quality these days you can do an abundance of artsy things with them. Again, you may not be shooting landscapes right now, but times like this call for you to get creative. Why not do a colour challenge, photographing objects of the same colour in an abstract way, when you’re out on your daily walk? You can do this indoors, too – I love the way Caroline South creates beautiful images from everyday objects, grouped together by colour. Sara Tasker has also been sharing stay home photo challenge prompts via her blog Me & Orla.
I’ve rounded up my favourite newsletters for High Life North, here. When you sign up to newsletters featuring subjects you’re interested in, they can feel more like personal correspondence from a friend then a round-robin mail-out.
Google Street View frankly blows my mind. Did you know, via the Arts and Culture section you can explore the world, visiting everywhere from the Taj Mahal to Hong Kong’s Blue House. I personally like ‘walking’ around New York listening to Odyssey’s Native New Yorker and pretending I’m in a movie. Listen, you take your kicks where you can get ‘em in times like this. I’m walking here!
Can’t face exercise? I couldn’t when I was ill, (ME symptoms are often made worse with physical activity) and I still have anxieties around exercise now. However, light stretching is a great way to move the body, relax your muscles and unwind.
Radio is another welcome companion to isolation. Cillian Murphy’s Radio 6 playlists are so good I forcefully suggest them to every human I meet, whether they want to hear it or not. Alternatively, have you worked your way through every episode of Desert Island Discs? What do you mean, no? There’s 2253 episodes available – get on that. BBC Radio 4’s Soul Music is another favourite, each episode hears people tell stories of songs that have powerfully impacted their lives. Warning – most episodes will make you cry.
Being positive isn’t a magic cure for any ill but if you can bring some joy into your life at a rough time, why not? I love following The Happy Newsletter, Tanks Good News, and Positive News at a time when the world seems pretty bleak. I’m not suggesting being ignorant to the problems in the world right now, or not watching the regular news. Watching one segment of news from a reputable source to keep updated, safe and informed on the latest advice is necessary. But to avoid overwhelming yourself, make that the days limit. Hopefully the above suggestions will offer a little balance, with mood-lifting stories of how amongst all chaos there are always people helping.
This took me a while to get into, after repeatedly scribbling NOTHING! I’M IN AGONY AND A BURDEN TO MY LOVED ONES!! But once you get in the habit, it helps. If you’re having a bad day it’s great to look back on, too. Mine included a good cup of tea, and despite my physical restrictions – still being able to see, smell, taste, laugh and feel. It’s the simple things, as they say. Gratitude can take many forms, it can be anything from that pretty tree I can see from my window, a bird merrily pecking at the soil or the way my dog does a little dance when I put her food out. When you put your focus on the little things bigger worries can often feel less troublesome, even for a short while. Quick bullet points on a scrap of paper will suffice.
I had many fears and anxieties when I became unwell – would I ever feel better? Would I ever be able to work? Would I live a normal life? It was at times near-impossible to stay hopeful especially when many, many unhelpful doctors had told me answers to the above would be a resounding no (sure showed you, suckers). I didn’t think I’d ever say I found solace in an inspirational quote but hey, whatever helps right? Following Emily Maroutian, Jamie Varon, Jess Sharp and Amber Rae means encouraging words pop up on my feed, usually exactly when I need them.
For me, this often meant just opening the window and sticking my head out. Seriously, it’s simple but effective. If you can make the most of the Government sanctioned daily exercise, even if it’s walking around the block, do it. Or if you are lucky enough to have a garden or balcony, utilise it. Being in the fresh air really does lift the mood.
Reading Viktor Frankl
This book got me through many a dark hour. As a prominent Viennese psychiatrist before the war, Viktor Frankl was uniquely able to observe the way that both he and others coped (or didn’t) with the experience of Auschwitz’s concentration camps. Frankl noticed it was the men who comforted others and who gave away their last piece of bread that survived the longest – and who offered proof that everything can be taken away from us, except the ability to choose our attitude in any given set of circumstances.
Bringing the outside in
Plants are known mood-lifters, I love caring for mine – eagerly awaiting the growth of new leaves and lovingly watering each species in my greenery brood. If you don’t already have plants in the house, consider pondering and stopping to touch various leaves, trees and plants on your daily walk. You might feel a little silly at first but seriously – it helps.
Film & TV
Whilst this might seem an obvious choice, the way to make this a fun activity is by deep-diving into your obsessions. You have to commit and make watching a grand viewing event. In times like this sticking on Netflix and hoping for the best will not do. First, think about your interests and watch in ‘themes’. Love 90s rom coms? Work your way through the ultimate list in that genre, if possible chatting to someone you live with about what you thought. This Was Hollywood has helpfully rounded up 100 vintage feel-good films, here. Have you always wanted to watch the old black and white classics? Never had time to watch every film that’s ever won an Oscar? You do now. Try working your way through IMDB’s list of the 250 films and TV Shows of all time. Or, picking your favourite actor and watching their entire back-catalogue. This will, I promise lead to other obsessions much like stumbling from one Wikipedia page to another, you never know where you’ll end up. I found an actor I liked then watched their Inside The Actors Studio interview, which led to watching every Inside The Actors Studio interview ever made. Rabbit hole!
Books & Audiobooks
If you’ve been meaning to read more lately, check out downloadable e-books if you can’t get to the shops. We’ve rounded up the best new books coming out this month which is a great place to start. I found audiobooks very soothing, and easier to digest when I couldn’t concentrate.
Rather than simply hitting like on someone’s post and moving on, why not comment and create a conversation? Whilst we were once encouraged not to talk to strangers on the internet, I have actually made many friends this way. Get chatting.
Bring back the art of snail mail by writing to the friends and family you can’t see right now and feel like Mr Darcy in the process.
Calligraphy, crochet, knitting, collage, drawing, painting, embroidery – you name it, I’ve done it. Some of my creations were good, some went straight in the bin. But hell, they filled an hour. I hear you saying you can’t get out for supplies, why not try drawing objects around your house ‘still life’ or cutting up an old magazine to create a funky collage? Find ideas on Instagram with the hashtag #coronacrafting, via Hobbycraft’s blog, or the Handmade Craft Network on Facebook.
Again, this took much practise – but I guess we have time, right? Check out the NHS’ guide on mindfulness, which ties in really well with gratitude journaling. To find out how it has helped other people in a practical way, check out this article by Katie Holmes on OutwitTrade.
The internet’s innovative answers to isolation:
While I was unwell, it was at a time when forums and blogs were just becoming a thing, pre-Instagram. Now there’s an abundance of life online with people sharing resources, their skills and time. All I’m saying is when I was at my lowest, I could have really done with Elton John and co streaming a live concert into my living room, not that I’m bitter or anything. Here are some incredible (not to mention free!) Things going on around the web:
As part of Channel 4’s response to the coronavirus pandemic, acclaimed artist Grayson Perry will be teaching art to a nation in lockdown in Grayson’s Art Club. There’ll be lessons on drawing, painting and sculpture as well as chats with various artists about their own creative process. Something to look forward to.
If you’re an animal lover, check out the zoos offering live streams, including Chester Zoo and Edinburgh Zoo (I can’t get enough of those Pandas.) Or go Stateside at the San Diego or Houston Zoo and Monterey Bay Aquarium.
Theatre-fan? The National is streaming critically acclaimed shows online for free, Soho Theatre has made Phoebe Waller Bridge’s award-winning Fleabag available to stream from just £4, with proceeds going to Corona Virus charities, while Andrew Lloyd Webber is releasing full-length, smash-hit musicals once a week for you to watch for free on YouTube.
Fashion lovers listen-up, McQueen is inviting you to join their creative community – working from home on a series of projects. This week they are prompting you to sketch their A/W 2019 Rose dress, sharing your creations on Instagram with the hashtag #McQueenCreators.
I hope the above suggestions offer you some solace in this sad time. Stay home and stay safe.