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“Computer says no” – Striking the balance when your body isn’t having it

By Jess Speller

The background is a dark purple. In each corner there is a beautifully illustrated colourful  head and shoulders. They are Disabled people of a variety of genders and ethnicities. Running between these people are continuous white line drawings of abstract faces. This was created by @kteaillustrations. In the centre there is a silvery box with a picture of Jess inside. Underneath is the text “Computer says no”  – Striking the balance when your body isn’t having it by Jess Spelling”

Off goes the first alarm. I sit up to switch it off and the “computer says no” meme immediately comes to mind, clearly today my body is not feeling it. That might be fine at the weekend or a day off, I can turn off the alarm, lie back down and regroup in a few hours. But today, I have placement to attend, emails to deal with and studying to do. I’m a final year medical student with severe, uncontrolled asthma and an immune deficiency, so days where my body doesn’t want to play ball are less than ideal!

Things look very different now to when I first started university. “Back in the day” getting up for lectures after getting in at 4am was fine, the more I had to do the better as far as I was concerned. Now? A bad day means sitting at my desk is too tiring. I’m definitely not alone in this, and it’s probably a familiar situation to lots of us with chronic illnesses.

But however much I might want them to, my illnesses aren’t going anywhere any time soon, so the question then comes – how do you manage things in the meantime? I’ve already taken two years out of my course to try and improve my health so now I need to develop strategies to help me manage everyday life, studying and placement alongside my symptoms.

When I get up in the morning having spent half the night awake coughing or suffering with the dreaded steroid insomnia, I have a decision to make. Can I push on and work? Will I actually remember anything I study? Will being active and going in to placement push me over the edge and land me back in hospital on the wrong side of the stethoscope? Will I manage ok today, but then have to spend the next 3 days in bed to recover? Or am I worrying over nothing today and everything will be fine if I get moving?

Some days nothing feels manageable, but over the years I’ve come up with little tactics and tweaks that mean I can normally get something done, no matter how small! And slowly but surely, I’m dragging myself to that finish line. So, these are some of the ways I try to get the balance right when my body just isn’t having it.

Pace yourself

It might seem obvious but I’m pretty sure it’s something we’re all notoriously bad at. Resting when you feel rough is one thing, and generally something I’m pretty good at (the sloth is definitely my spirit animal) but I tend to immediately overdo things the second I feel well. Christmas was a great example of this – I felt great, so tidied the house, cooked a massive dinner and stayed up. Fast forward two days and I had spent most of the previous 48 hours asleep!

Listen to your body and do what you feel able to do.

You can visualise this any way you like but one of the most popular ways is the “Spoon Theory”. Everyday you have a certain number of spoons allocated and every task uses up a certain number. So you might have 10 spoons for your day, but showering uses two and getting dressed uses three – that’s half your energy gone before you’ve even thought about cooking or working. You can stretch things and use extra, but then you won’t have as many spoons to use in the coming days and will need to rest more.

I don’t necessarily measure things in my day in terms of spoons but definitely found it a really helpful way to understand why my fatigue and symptoms vary depending on my activity and it helps me plan things better – if I’ve got a busy day coming up that I can’t change I know I’ll need some quieter days afterwards to recover.

Do work in small chunks

This is linked to pacing yourself. It’s really easy to try and slog away for hours at your desk when your body and brain just don’t want to focus properly. And realistically this is never a great idea (chronically ill or not!) – all you’re likely to do is get more stressed, more tired and not actually take anything in.

At this point it’s time to take a break! Accept that work isn’t happening and come back in a bit. Then, when you come back, just aim to do a small chunk. 20 minutes of productive work is better than three hours of staring at a screen! And by doing things in small amounts with regular breaks, you’ll probably actually end up getting a surprising amount done.

I like to use focus apps like flora to set times for small periods of work – it stops me trying to slog away unproductively for too long and I get to grow a pretty virtual garden at the same time (plus it’s free which is always good!).

Learn what works for you and adapt

People always say they find different revision techniques suit them compared to others, and there’s no reason that can’t be the case depending on how you’re feeling too! When I’m feeling well and productive I like being sat at my desk, making notes and working through question banks online. But if I’m feeling rubbish that just won’t happen – I’d be falling asleep at my desk (if I could even summon the enthusiasm to get there!).

So if I feel a bit rubbish I’ll work in bed – I’ve got a laptop tray to help with this or I’ll try to do questions on my phone using apps or websites. If even that feels like too much then I ask my mum if she minds talking through some questions with me over the phone in the evening (she has a couple of question books at home that she asks me things from).

The tactics you use don’t matter, but having ways you can adapt your work depending on how you’re feeling can really help with getting things done even when you feel rubbish.

Have a support system

I feel like you can never underestimate the importance of a good support system for your mental health and keeping you sane! Just having someone to talk to that understands how you’re doing can do wonders for things.

Given the current situation this can be pretty difficult at the moment but take advantage of online methods of contact – skype, zoom and facetime are great for making you feel like you’ve had a bit of human contact even if it isn’t quite the same as a hug in person!

Plan and prioritise tasks

At the end of the day you can talk about ways to manage symptoms and illness and keep working but things don’t always go to plan. Sometimes no amount of pacing and planning will stop bodies deciding that they’re bored of functioning normally! When this happens a lot of things tend to get left by the wayside – so know what is on your to do list and prioritise it accordingly. Get the most important things done first and realistically the rest can wait!

Whatever you prioritise will be different for everyone. For me priority number one is keeping on top of my medication, for someone else it might be a daily walk.

Keep your “go to” remedies in stock!

A lot of us will have those “go to” remedies we always reach for when certain symptoms come on! It might be heat/cool packs, painkillers, a certain tea or coffee, energy drinks, you name it!

For me its heat packs for when I’m having a flare and my muscles of breathing get tired out and sore. Normally I try to keep them in stock in my house but don’t always remember to buy new ones when I run out and instead wait for another flare – but then that puts me out of action until I can source some more!

Know your own health and have a plan

One of the most important things for learning to function and balance things with chronic illness is actually managing your illness! Know your symptoms, try and have a good relationship with your GP and any specialists you might see and try to get a management plan together to keep on top of things.

I do have quite a lot of issues with symptoms and flares still and things are very much not under control. But I know what medication I’m able to step up at home and when I need to make that call. I have contact details for my specialist teams to let them know if I’m struggling. And I know when I need to seek further medical attention and head into hospital if things really deteriorate.

This has been a steep learning curve and I still don’t get it right a lot of the time, but trying to keep on top of things medically means I can manage daily life a lot better in between issues!

Hopefully some of these things will help! At the end of the day a lot of our issues aren’t going to go away, but we can adapt and still achieve brilliant things.


(Originally published 23/1/21)

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