I have ME/chronic fatigue. Let me teach you how to be tired.

 Are you tired? Waking up late? Having too many  afternoon naps? Me too! There’s a bit of a “well aren’t we all” mentality at the moment, stuck in a dichotomy of acknowledging the toll of our current shitty circumstances /and/ discrediting it/. It’s a level of Stiff Upper Lip mentality of aggressive resilience that can only be achieved in trite films on the Home Front. Optimism isn’t bad. But stoicism is self destructive. So yes, Why did i ask? You’re probably fucking tired. But maybe I can convince you of the tricks of the trade. 

I have chronic fatigue. Most of you probably already knew that; unfortunately having a chronic illness that permeates every part of your life does, in fact, come up in conversation quite a bit. For those of you who don’t know what chronic fatigue is, it is an illness, which is sometimes linked to the immune system, that leaves you drained and — you guessed it — fatigued. It has many other long term symptoms that aren’t just tiredness, just as being sad is not the same as having chronic depression. My temperature control is out of it, my cognitive function is impaired, my whole body aches, my head hurts, the room spins; I get a sore throat, I feel horribly sick, my Circadian rhythms reverse themselves. Oh! And the heart palpitations, the sweating (ew), the shaking limbs. It’s not an illness to be trivialised and severe sufferers can be hospitalised.  But yes, fundamentally, I am in a constant state of genuine exhaustion. It’s a total blast! 

I do promise that I will get to the advice. I’m sorry for the Mummy Blog recipe style introduction, where I must detail my entire life story and FBI psychological profile before telling you how to bake some cookies. These millions of disclaimers are for my conscience. When I decided I wanted to use my ME  (myalgic encephalomyelitis — all the cool conditions have fancy names) experiences to write an advice post about tiredness, I worried I would delegitimise a condition with an already pretty substantial stigma. Simultaneously, I don’t want you to belittle your own tiredness and struggles when I’m actually trying to show you my credentials. Credentials which, of course, are in no way professional. I’ll provide links for mental health services at the end, and urge you to contact your GP if you think you need medical advice. 

I’ve been diagnosed with ME for over a year now (and was fighting for the diagnosis for a year before that). I’ve been discharged from occupational therapy — didn’t get a badge, or a certificate or even a lolly, which was disappointing. I’ve changed how I live my whole life. 

(Imagine changing your entire day to day life? I’m not sure if any of you can relate...)

My occupational therapist (OT) described having ME as like having a faulty battery. So an iPhone battery. Your body cannot store energy properly; or rather, it is used inefficiently. Therefore, you get drained quicker. Your body can’t run properly. The fan starts whirring. Windows has stopped responding. Sometimes it is caused by the strain of recovering from a virus — some experts are likening it to the infamous Long Covid.  Other times it’s mental illness. 

Anyone who has ever had an emotion (so everyone who isn’t Jeff Bezzos) will know that that shit is tiring. Being anxious or depressed is a constant drain on your energy. So imagine everyone’s surprise when, during a global pandemic where the baseline anxiety level is “midway through the sinking of the Titanic”, people get tired. People get fucking exhausted. They feel sick and like they’ve been on a week long bender, or like you do at  4am at a sleepover when you just want your mum. 

So now you come to me, on the day of my daughter’s wedding. The wise old sage with a crooked staff and mysterious healing magics.

(Am I the Godfather or Gandalf the Grey? Who knows!) 

Nah, it’s all cool. Covid-19 stress hasn’t been kind to my energy levels either. So I feel like, if we’re all going to get through this together, I will pass down my words of wisdom to you — as if I ever listen to my own advice. We are never taught how to rest. It’s something we think we don’t need to be taught. But having ME has made me realise how awfully we treat ourselves. So here are my (read: my occupational therapist’s) top tips on being Tired. 

1.  There are two different kinds of “rest”, and you need both. 

Not that there’s a universally correct way to go about things, but I think in our society driven by production we’ve lost sense of what “rest” is. There are two kinds. The first is what we associate with rest. You may take a  break to watch a YouTube video or some mindless telly, call a friend, or do some art. This kind of rest is very good for your mental health! But when your energy levels are, uh, compromised, what our bodies need is “energy neutral rest” (to quote my OT). 

Turns out, watching softly spoken bisexual women talk about serial killers on YouTube takes energy. Even if you think you’re zoning out. Concentration and comprehension both take energy. Now, I mix in energy neutral breaks. This can include (and I recommend) mindfulness or meditation — this is coming from me, who breaks out in hives at the first mention of homeopathy or alternative medicine. My OT also suggested watching a candle, or holding and feeling a cup of tea. Although, I’m not sure if sitting and staring into naked flame sounds relaxing or like the beginnings of pyromania. 

Rest breaks only have to be short — pre-Covid I would sometimes be rejuvenated by 5 minutes meditating on the sofa. Currently, I play it by ear. You can schedule your day and your breaks, but currently I work a sensible amount of time (remember that the human brain can’t concentrate for as long as we try to make it) before judging how I feel. If I feel physically ill, I will rest longer. My average rest is 20 minutes. This I spend lying on my bed listening to calm, comforting playlists. I only listen to podcasts with dialogue or ASMR videos if I know my brain will drift to stressful places otherwise.  And I try not to nap, because waking up can feel grim and sleep schedules are delicate things. 

Even if you personally think that watching telly /is/ restful enough for you, I do suggest trying to incorporate this new energy neutral rest. What harm can it do? Who doesn’t love a doze on the sofa? But very importantly, at the same time, don't neglect that fun and simulating rest. All rest, no play, makes Brain a sad boy.  

2. Sleep hygiene is, unfortunately, a thing. 

I love my bed. I used to spend my whole life in it, when I wasn’t dragged out by real life. Having depression and ME means I still spend a lot of my time there. Just as we’re all spending so, so, so much more time in our houses. 

People who like to tell you to not work in or bring tech to bed are usually smug, “detoxed” walking Pinterest boards. I’ve always been reluctant to take advice from a subculture that thinks detoxing is a thing outside of getting poisoned. (See: Podcast Episode By An Actual Doctor). And I don’t think we should shame people for bad sleep “hygiene”, as that word definitely makes those of us who slip up feel dirty. But if you are having a hard time getting to sleep, disassociating your bed from your day time activities does annoyingly help. On days where I can’t do that, I try to push the duvet aside or move things around so it at least feels different.  I will open my curtains to let daylight in and work downstairs often. 

3. Eat your damn meals. (TW// food, weight loss, dieting).

This sounds extraordinarily obvious. Bit I am fucking awful at this one. Cooking, to me, is a real energy drainer and not something I tend to prioritise over University work or anything that will give me even the tiniest scrap of serotonin in this world. The language of shame we use to discuss health and food doesn’t help. Losing weight is never portrayed as unhealthy as gaining weight. Skinniness is healthy. And “unhealthy diets” are a result of laziness or childishness, and not because said diets are quicker and cheaper for those of us who struggle.

Sometimes, when I was too tired, I’d skip meals. (Still do, sometimes). Shockingly, that does not help with energy levels. It’s like I learnt nothing from burning crisps in year 10 Chemistry. (Another authority approved gateway into pyromania and/or eating stale Monster Munch). Both my OT and Brain Therapist have told me the same: “bad” food is better than no food. If all you can manage that day is an oven pizza, a microwave meal, or Deliveroo Maccies, that’s okay. For a start, your body will naturally crave carbohydrates when your energy levels are low. I’m not telling everyone to give up on vegetables. Of course having a more balanced diet is going to provide more energy more in the long run. But sometimes it’s simply not possible to cook bigger things. 

Low energy food tips include: 

- Buy frozen veg!

- Pasta + premade sauce of choice = a totally legitimate meal.

- Eat little and often. Like a horse. Or a Hobbit.

- The notions of breakfast, lunch, and dinner foods are mere constructs, and the only priority is eating three meals.

- Tinned soup!

- Microwave meals and other instant meals should not be written off as “lazy” or “unhealthy” when it is fair more unhealthy to just not eat. Keep a stock frozen for the rough times.

- Additionally, batch cook on days you have energy.

- Order groceries online. 

- Let others help cook and shop for you.

- You can literally never go wrong with a (vegetarian) sausage sandwich.

 

4. Take care of your mental health.

As I said before, struggling emotionally is tiring. I will list resources for therapy and helplines at the end of this post, but for now my top tips are: 

- Move spaces regularly (bedroom to living room, or living room to a walk in the park).

- Try to attend social events as much as you are able.

- Do not “doomscroll”. If it’s a problem, keep your exposure to the news to the bare necessities.  

-  Cuddle your pets, if possible. 

-  Treat yourself like you would your best friend. Being hard on yourself, or holding yourself to old standards of productivity, is unfair. You cannot “shame” yourself into doing better — whatever “better” may mean. Positive reinforcements work better than negative, and you do not deserve to be spoken to the way you speak to yourself. 

- Try to get enough sleep.

- Pick up/maintain hobbies, if you are able. 

- If safe, socially distanced walks outdoors with friends are great. 

- Be safe.

- Be aware that you do not have to feel guilty for saying no, cancelling plans you don’t feel up to, or refusing plans you don’t feel are safe. 

- Shower.

- Dress up!

- Tidy your living space.

- Practise mindfulness (again!)

5. Being tired can be really, really shit. Don’t pretend that it isn’t.

I remember a time last year, I was walking across town to my house from the station. It was dark, I had with me my suitcase, and Exeter is somehow always uphill from all directions. It was a twenty-five minute walk that I’d made many times.

I got lapped by a runner twice. I thought I was going to collapse and I worried nobody would find me in the ditch at the bottom of Streatham Drive. Years ago, I worked with horses, lifting water buckets and running alongside toddlers. Years before that, I’d been okay at cross country. I’d never been an athlete — far from it. But sat on a wet bench looking at the illuminated grandeur of Washington Singer and I felt such a profound sense of loss. My body could no longer be the body I loved, with its stretch marks from riding and illusion of muscle. What’s more, I’d lost control of it. It wasn’t mine.

The pandemic has left all of us feeling powerless. Not just against the virus, or our finances, or futures and our criminally obtuse governments (ahem). But against our bodies and our minds. Our bodies are sites of contagion. Our brains have been tampered with by stress and grief. And again, we are tired. Understandably so. 

Having chronic fatigue made me accept giving up things that I love. I cannot write as often, and I’ve all but given up horses. I miss seminars and social events and I hate it. Just like we all miss our friends, our families, cafes and bars and bookshops. Like with the pandemic, exhaustion means you cannot always do what you want to, to the standard you want. You may have to cancel on that Jackbox game.  You may have to put your painting down for the evening to rest. Maybe you won’t get that seminar prep done this week, and maybe you do need an extension on that essay. Which returns me to my first and also final point:

6) You don't have to grit your teeth and bear it.

Working through exhaustion makes exhaustion worse. Rest now to do more later. What’s more, if you can’t do it, that’s okay. I despite nationalistic war allegory, and clapping for the bloody NHS so that Boris Johnson can sleep at night — and wow, I am sorry for getting political. (I’m not). But I do believe in community. I believe in support networks — reaching out to a friend, not assuming the worst when someone cancels or slips up, working together on errands. That community may be online. It might be family. It may be the little queer commune of a house that you live in that’s decorated with clowns paintings — that’s my house, actually, so if it is the you must be one of my housemates and I’d like to say we’re running low on milk. It might not be physically close. You may have replaced a beige sofa for Zoom call therapy. But the flipside of bemoaning that “everyone is tired” is that, well, everyone is tired. It should not be a phrase of exclusion, but of empathy. Everyone is tired, so everyone understands. Perhaps I’m being my usual Peace and Love Tree Hugging self but my most important piece of advice is to be empathetic — of others, and of yourself. And as much as I want this weird reality to be over, as a chronically fatigued person, I do hope we don’t get tired of our new found patience and kindness.

 

WELL-BEING LINKS AND FURTHER INFORMATION:

Mind’s guide to mental health support and services, including information, therapy, and crisis services (X)

NHS mental help services (X)

NHS urgent help, including helpline numbers such as the Samaritans (X)

ME Association website for more useful information, research, and advocacy surrounding CFS/ME (X)