I originally wrote this post quite a long time ago – back when I was first starting to think about blogging about chronic illness and disability. It’s sort of a how-to guide for the pitfalls to avoid when you’re living with ME.
I never posted it because I feel like it’s mostly information people with ME already know – but then I thought, with the rise of long covid and how similar some of the symptoms seem to be to ME, then maybe it is worth putting it out there, just in case someone new to chronic fatigue and chronic illness stumbles across it who’s never read this advice before. The tips are probably also useful for people with any sort of chronic fatigue or condition, though the focus is on ME, seeing as that’s the one I live with.
So, without further ado: here’s my guide to what NOT to do when you have ME.
Chronic fatigue is a horrible symptom. It is so much more than being ‘just tired’; it feels like there are weights tied to my arms and legs and waist, holding me down every time I try to roll over or, if by some miracle I’m well enough, actually stand up. Even when I’m not trying to move, fatigue fills my limbs like lead. My body feels heavier than it ever used to before I became sick.
With that in mind, it is tough to do any sort of activity with a condition like ME, or indeed, any chronic illness that causes fatigue. Never mind the pain, dizziness, orthostatic intolerance, migraines, and gastric issues that often come hand-in-hand with ME. All in all, exercise is NOT good for people with ME, especially when the worst of symptoms often hit after activity, as seen in the hallmark ME symptom of Post-Exertional Malaise, which can hit any time from a few hours after activity to two days later, and can last for weeks or months depending on the amount of exertion your body has gone through.
However, I, for one, find it difficult to get this message internalised in my brain. It is so so easy for me to overdo it because I might be enjoying whatever it is I’m doing – writing, watching tv, going outside for a little while in my wheelchair – and then forget that I need to pace and build in rest time, and before I know it, BAM, the fatigue hits and I ragdoll (a state where a person with ME loses control of their limbs and becomes floppy and difficult to move). Then it becomes an army mission to get into bed before I crash completely and go into ‘fatigue sleep’ (what I call it when I sleep so deeply that it is impossible to wake me up. My partner once rearranged all the furniture in the room whilst I fatigue slept on the sofa and I DID NOT WAKE UP).
I often joke that I need ‘REST’ tattooed on my forehead.
So, in the interest of stopping myself (and maybe some of you) from making these mistakes, here are five examples of what NOT to do when you have ME.
1) Go for a run/walk
I’m sure that most people with chronic fatigue will already know what a bad idea this is, but it’s worth repeating anyway: do NOT overexert yourself. A lot of people (unfortunately including medical professionals) will tell us that exercise is good for us; that the less we move, the more fatigued we become, therefore it is important to keep stretching and exercising so that we don’t lose muscle definition and strength. This is seen as more important than resting and recovering. Besides, who wants to spend all day every day in bed, right?
Sorry to say, but that is absolute rubbish.
When someone with ME attempts to move, there is evidence that the body must go into anaerobic exercise far too soon, leading to fatigue, pain, cramps, dizziness, and early exhaustion. (For further reading, I highly recommend Dr Systrom’s work. Start here). I myself have undergone a CPET (an exercise test done in hospital) that showed my anaerobic threshold was significantly lower than it should be in people my age (I was 20 at the time). While we might not yet understand the scientific reasoning behind this, there is plenty of evidence, especially from the patient community, that exercise significantly worsens symptoms of fatigue, and that the more exercise we do, the longer it takes to recover, until eventually we could knock ourselves into a permanent relapse or worsening of health.
I have had a neurologist on the neurosurgery ward in hospital tell me that it is essential that I rest when I feel even remotely sick; that the sooner I give myself a chance to recover from exertion, the more likely it is that I will keep my abilities to move. Unfortunately, this is not the advice that most medical professionals give. I have had a physiotherapist tell me that the more I lie in bed, the more fatigued I will become, and I won’t begin to feel energised until I start moving, therefore it is important that I exercise at least once an hour.
Not only is that advice incorrect; it is dangerous. Overexertion is proven to lead to a significant deterioration in exercise tolerance in people with ME, and the only effective way to manage activity is through careful pacing and rest. For me, I feel at my best when I practice strict pacing of half an hour of activity followed by fifteen minutes of rest. If I don’t do this, I quickly become exhausted, confused, dizzy, and slur my words when I try to communicate.
Still, all this is easier said than done. I love becoming immersed in a task, and I hate pacing. My partner tells me that I redefine the word ‘rest’ because I always try and check my social media, or make a to-do list, or something that feels low-energy when I’m supposed to be resting (which means doing nothing. No, don’t pick up the phone. No, don’t scroll twitter. No, don’t read that text message you got three days ago that you still haven’t opened. Rest).
Partner has just pointed out that I’m not pacing as I write this post. See what I mean? Off to take a break now!
Ok, back. Much as I hate pacing and resting, it actually helps me to be more productive throughout the day than if I attempted to do things non-stop, so. Lesson number one: work within your limits and REST.
2) Do the same activity all day
This is another that I struggle with, because my instinct is to get thoroughly absorbed in whatever my current obsession is. Whether it be writing, reading an amazing book, messaging my friends, scrolling twitter, crochet or cross stitching – whatever the activity, I just want to be doing it all day long. The temptation to spend hours slaving over whatever my current project is remains far too strong.
However, this is the worst possible thing I could do for my fatigue.
Fatigued brains have trouble processing their surroundings, so it’s important to give them a break. Pacing and resting helps with this, but also changing up activity is a nice way to get your brain to change its task without tiring it out from doing one thing all day. The first person to advise me about this was the ME specialist I saw when I was at university in Durham, and doing this actually really improved how much I was able to achieve in one day.
I would do two half-hours of writing, with fifteen minute breaks in-between, then half an hour of crafts, then maybe half an hour of reading, then half an hour of writing again, then half an hour watching videos, etc. etc., and my ability to stay focused actually lasted a lot longer than it did when I was trying to do the same thing all day.
Of course, some days I become far too fatigued after only one half-hour of activity, if that, and I am forced to spend the rest of the day doing low-energy things like listening to podcasts or watching short videos on YouTube. But on the days when I have enough energy to complete a few tasks, switching up the genre and type of activity definitely helps me to stay awake and aware for longer.
3) Read too much
I have always been an avid reader, and one of the hardest losses I’ve had to take since the onset of my ME seven years ago is the inability to read as quickly or as much as I used to. As a child, I would devour three books a week; now, I’m lucky if I manage one every four months!
As with most activity, the temptation when I feel well enough to read is to sit down with a book and devour it until I physically can’t focus anymore. Unsurprisingly, this is not a good idea. Rest is extremely important (are you sensing a theme here?).
I still love to read, but I have to admit that I find it far more difficult than I ever used to. Indeed, months go by where I’m unable to read at all, because when I look at a page of text I either feel physically nauseous, dizzy, sick, or get a headache within a few seconds of trying to make sense of the words. Sometimes, when I’m very fatigued, the letters will blur and start to jump around the page. Even if they don’t, when I try to focus on a sentence I won’t be able to put the words together to understand what they mean, and I have to read each sentence at least four or five times to really be able to digest what it’s trying to say.
This is, of course, incredibly frustrating – especially considering I’m an author! I feel so stupid when I’m unable to answer text messages quickly because I just can’t understand what the message says. I have a few tricks that help; getting someone else to read the text out loud to me helps me to process it easier, and also I use a ‘reading window’ – a piece of card that covers the rest of the text apart from the one line I am reading. This was advised by a doctor who specialises in brain injuries and it actually helps me a lot. But even if I’m well enough to be able to process texts, I can’t read for long before I start to feel sick.
Often, I don’t actually feel terrible until I put the book down. I can be quite happily reading away, completely lost in the world, and then I check the time and notice it’s been over an hour. Oops; not supposed to do that. So I put the book down and lie back to rest – and then, suddenly, it hits.
The nausea. The dizziness. The feeling like my head is full of cotton wool. The slurred speech. The headache that could well become a migraine. When I’ve really overdone it, I’ll even have a seizure.
This is not ideal. So, as tempting as it is to lose myself in the story, I know that I have to be disciplined and stop reading after half an hour – less if I start to feel even remotely bad. It’s incredibly frustrating, but ultimately it helps to stave off crashes.
4) ‘Push through’ bad feelings
I’m sure we’re all familiar with the concept of ‘pushing through’ illnesses. Someone who has a cold, but is otherwise healthy, might be feeling rough and tired, but they will still turn up to work or university or school because they can force themselves to concentrate enough to get by and then rest when they get home.
Not so with ME.
Much like physical exertion, any kind of activity or stimulation is exhausting to someone with chronic fatigue. Fatigued brains struggle to process their surroundings, and people with ME are often sensitive to sound and light, so any sort of stimulation can lead to bad things. Symptoms can include a sore throat, flu-like aches and stuffy sinuses, headaches, muscle pain, joint pain, dizziness, sudden changes in temperature, nausea… the list goes on.
I often find that the beginning of these symptoms will be fairly mild. I might be curled up on the sofa watching tv, and I start to notice that I’m drifting – following the plot might become challenging, or maybe I’ll have a sore throat or start coughing, or I might notice that I become very hot or cold or feel quite nauseous. The temptation is to ignore these pesky feelings and keep watching the programme, because I’m enjoying my quiet night in – but this can be the worst thing to do.
If I ignore my symptoms and keep focusing, then the symptoms get significantly worse until I physically can’t ignore them anymore. My sore throat will start burning. My headache will become a migraine and, at worst, a seizure. My temperature will be so all over the place that I’ll be sweating and shivering at the same time. My pain will flare until it’s all I can think about. And I’ll ragdoll – lose control of my limbs, have my arms and legs go numb, and be unable to move my body without assistance.
At times like this, it is too late. I need to be put into bed in the dark and quiet and be left alone to recover – and it is deathly boring. I can’t tolerate any sound or light, so no videos or podcasts are possible – I just have to lie there silently until the symptoms ease, or, if I’m lucky, I’ll be able to sleep. The recovery from this can take anywhere from a few hours to a few days, and more if I’ve really overexerted.
It is so, so tempting to just continue doing whatever I’m doing once I start to feel bad, especially when I’m enjoying myself, but I have learned that this is not good in the long-term. I’d much rather complain about having to stop early, but stop and rest for a while until I try and be active again later, than push through and end up in a dark room for days on end.
It’s a hard lesson to learn, and one I still struggle with, but I know that it’s better for me in the end.
By the way, when I say ‘active’, I mean literally just sitting on the sofa watching tv. No physical activity at all. It can also include getting up to go to the bathroom, or reading, or even having a conversation – if I start to feel bad, I need to stop BEFORE I hit the wall and end up back in that dreaded dark room once again.
5) Suffer alone
We do not need to suffer alone.
A lot of us with chronic illnesses or disabilities often harbour a lot of guilt. We feel like we are responsible for making the lives of our loved ones worse – they have to worry about us, care for us, and help us with menial tasks that we feel like we should be able to do ourselves. It is all too easy to feel like a burden. As a result, a lot of us tend to retreat when we feel really bad, whether that’s because we want to save a loved one from worrying, or because we don’t want to cause a fuss.
Personally, I find that this doesn’t help at all.
It is natural to be frustrated when your body is sick. It is natural to be angry and upset and emotional when you find that you can’t do something that used to be second nature. Retreating from the people around us often serves to isolate us even more than chronic illness already does. A lot of us are housebound or bedbound, and it is a struggle to go out and meet friends and family and have a ‘normal’ trip out. Plus, we are often faced with stigma and misunderstanding from even those closest to us. “Oh, you’re still ill? I’d have thought you’d have recovered by now!” is something a lot of us have heard too many times to count.
It is easy to want to hide. And it’s perfectly understandable – we are at our most vulnerable when we are sick, as we are completely dependent on the people around us to meet even our most basic needs. I can’t get my own food, go to the bathroom, or even get dressed without assistance. It’s humiliating, and it makes me want to retreat.
But, I’ve learned that hiding only makes me more miserable.
When I am sick and alone, it is easy to spiral into despair. It is easy to think of the worst-case scenarios and imagine catastrophes and feel like my whole world is ending because I feel so terrible and I can’t do a single thing for myself. I used to slam the door and lie in bed when I felt sick and forbid anyone from coming in, because I was so ashamed at the thought of my loved ones seeing me so weak and pathetic that I couldn’t even sit up in bed on my own. I was embarrassed and sad and ashamed.
But, when I am brave and invite people in – that is when healing truly begins. And I don’t mean physically (though of course an extra pair of hands is excellent when you need someone to pass you the water bottle) but mentally as well. Having my partner with me on my bad days is one of my absolute favourite things now, although when we were first seeing each other I was absolutely terrified of having to show her what I was like when I was really unwell. I am lucky that she takes it in her stride, but having her holding my hand and stroking my hair and gently talking to me without expecting a reply when I’m lying in bed shaking and in pain is a great comfort, and now I wouldn’t know what to do without her.
I still feel guilty. I still feel terrible for making her worry about me. But I can also acknowledge that it isn’t my doing: I didn’t invite this illness into my life. I didn’t ask for it. I have been given it, and sometimes it is necessary to share a burden rather than try to shoulder it all on my own. I’m not strong enough to survive this illness alone, but with a support network of friends and family who understand and are there to help me, I am better able to cope.
I don’t feel so lonely, at least.
And while none of them may understand exactly what I’m going through, having them there with me is a great help. There are, naturally, some people that are not helpful – the ones that say ‘just get on with it’ or claim that we’re making a big deal out of nothing are probably not the ones to invite in on your bad days – but on the whole, having a support network of even just one or two people that you can call when you feel awful can make all the difference.
If you don’t feel like you have anyone like that in your life, you could always try reaching out online. The twitter disabled community is fantastic, with many hashtags like #PwME and #millionsmissing and #NEISvoid giving access to hundreds of other people who know exactly what you are going through. There are countless facebook groups for every condition under the sun, and almost every social media platform has some form of chronically ill community. It is worth reaching out, even if it’s scary, because other patients are the people who will truly understand what you are going through. Plus, no one gets angry about slow replies, because we all know how difficult it is to message when the fatigue is strong!
So, there are a few ideas of what not to do when you have chronic fatigue or ME. I hope this is helpful to some people in some regard; I know I need to take my own advice far more often than I do! In fact, writing this post has reminded me of all the good habits I could do with incorporating into my daily routine so that I don’t crash quite so much.
So, with that in mind, I’m off to switch activity and work in half-hour increments for the rest of the day. Who wants to join me?
Follow me on twitter @jasewrites