I knew UKGE 2025 was going to be an epic event, but I hadn’t expected it to be as life-changing as it was. I’m used to being tired after a trip away, and having “con drop” after attending expos, but the crash that followed my 4-day trip to the NEC in Birmingham last year was colossal. I’ve since learned that it was, in fact, post-exertional malaise, and this type of crash occurs after intense activity in people with M.E. (myalgic encephalomyelitis). If it hadn’t been UKGE, it would have been something else that tipped me over.
After sudden chronic illness was thrust upon me in this way, I had to learn a new way to live. I went from wearing a Fitbit to the Visible band in the space of a couple of weeks. Today I want to talk about how my life looks living with M.E., how it’s more than just fatigue, and dig into the mental as well as physical impact of this cruel chronic illness.
How I Developed M.E.
How did I suddenly develop a life-changing chronic illness like M.E.? Let’s take things right back to the beginning.
I was quite a sickly child, with asthma, eczema, allergies and regular absences from school due to illness (a lot of which I now recognise to be stress-related due to my home environment). This was on top of having high frequency hearing loss, therefore struggling socially and isolating myself further, even from the small, parent-approved social circle around at that time. Skipping forward through a lot of happenings which impacted me deeply, but which don’t have a lot of relevance to this post, I developed glandular fever at the age of 17. Glandular fever is caused by the Epstein-Barr virus (EBV).
Because I had glandular fever (infectious mononucleosis) as a teenager, I had higher risk of developing M.E. later in life. There have been studies which show that around 9%-12% of people still meet ME/CFS diagnostic criteria six months after the EBV infection. (Katz et al., 2009; Jason et al., 2014; Katz et al., 2022). This implies lasting changes to how the immune system recovers and can be brought to the surface years later by things such as hormonal shifts during perimenopause.
I shifted into perimenopause at the start of 2022, and since then I have been doing my best to manage a lot of life and body changes. It seems that instead of my exercise habits and fondness for being busy 24/7 keeping me fit, I was actually cartwheeling down a path towards complete burn-out.
The Way Things Were
So much grief rises to the surface when I stop and make myself think about how my life was before the sudden onset of M.E. Most of the time I’m trying to push it out of my mind, how I used to be, how things used to be. Activities and hobbies which were so easy for me, and which of course, I took completely for granted. It’s easy to do so when you’re able-bodied and don’t expect your body to betray you, never mind in such a cruel and sudden fashion.
I started getting into exercise in 2018, when I was still deeply entrenched in diet culture and mistakenly thought I’d feel like, and BE, a better person if I was smaller in size. After several months of fanatical exercise, I dropped several stone in weight but realised something far more important. I actually enjoyed exercise, just for the sake of it, not to achieve any weight loss goals. My exercise of choice was walking the hills local to me every day, and I added exercise bike workouts, VR/Beat Saber sessions and running, over time.
Over the years, my exercise regime (because that’s what it was, a regime) ebbed and flowed like the seasons, depending on mood, motivation, passing illness, life events, the rancid ballsack that was COVID-19, and suchlike. But it was always there, something I could return to time after time, waiting for me like an old friend, welcoming me back into the fold. Until that wonderful option blinked out of existence.
M.E. slammed into my life like a meteor in spring 2025, and I haven’t been able to exercise since. I haven’t been able to do much of anything, to be honest. I did some research in my briefly capable moments, during that horrendous post-UKGE crash, and found out I had something the clinical world likes to call Chronic Fatigue Syndrome, or CFS.
Calling M.E. Chronic Fatigue Syndrome, And Why I Stopped
For the first couple of months, I referred to my chronic illness as CFS, as that’s what I was reading about online. I joined some Facebook groups, to feel a little less alone, and noticed people referring to this illness as ME/CFS, or just M.E. Was M.E. a different thing, I wondered? If so, why are some people grouping it together with CFS?
After speaking with a friend who also has M.E., I learned that CFS isn’t the preferred term within the community. CFS and M.E. do relate to the same illness, but CFS implies that the impact is just extreme fatigue. Which, as I knew from the start, it really isn’t.
M.E. triggers a large range of debilitating symptoms, which yes, include intense fatigue, but also things like rapid heart rate considering the activity level, lowered immune defence, brain fog, sleep disturbances, digestive issues, headache and migraine, muscle weakness, anxiety, dizziness, depression, bronchial difficulties such as chronic dry or productive cough, blurred vision, light sensitivity, light-headedness and more.
Calling the illness simple chronic fatigue in the face of all the above is ignorant at best, insulting at worst. My preference these days, like many others with the illness, is to call it M.E.
How I Know I Have M.E.
How can I be sure I have M.E.? After all, there’s no medical way to diagnose it. I know this, not only from being part of discussions in M.E. community groups, but also my own experiences. I’ve been to the GP several times in the past year about my severe symptoms, and they have carried out blood tests, urine tests, even an ECG for my heart. Previous to this, I had several tests to help diagnose perimenopause, including a CT scan on my brain due to the intense migraines and dizziness I suffered.
After several visits, ending with one where I was in tears, adamantly telling the GP I know I have M.E., I was finally referred to the local M.E. clinic for assessment and ultimately, I hope, official diagnosis. However, there is a long waiting list for this service via the NHS, so I am still waiting.
The symptoms I mentioned in the last section? I have all of them. The brain fog, which started with perimenopause, has reached frankly ridiculous levels. Trying to remember words and people’s names is the worst. I have extreme sensitivity to light, and regularly dim lights and close the curtains around the house. I joke that it’s the goth side of me, that I’m secretly a vampire, but in reality the bright daylight really hurts my eyes and triggers headache. My heart rate, which used to average 110 mid-Beat Saber workout, can now reach 125bpm simply sitting upright when I wake in the morning. I limit how many times I go upstairs in the day, because my heart hammers in my chest and it exhausts me more than the 5K I would regularly run – even in the week right before UKGE in May last year. This isn’t deconditioning. It’s M.E.
And through all this illness and frustration, I don’t even have the validation of an official diagnosis. There’s an undercurrent of worry that people don’t believe me, that perhaps they think I’m just lazy or I just wanted ‘a bit of a rest’. It isn’t only from the outside, either. My harsh inner critic loves a bit of insecurity to chew on, regularly taunting me with cutting whispers about how I must be incredibly lazy, that I just lack motivation, that I’ve given up, how I deserve all the things that are happening to me, that my life is over, that I would be better off… Well, you get the idea.
The Impact of M.E. On My Daily Life
Having M.E. hasn’t just affected my life, and I wouldn’t describe it as merely impacted, either. It has fundamentally changed how I live, day to day.
I wasn’t joking when I explained how I have to limit how many times I go upstairs in the day. Activities like doing the laundry, cooking, playing on the floor with my child, all things I wouldn’t have thought twice about before, now have to be carefully planned and measured out. Everything requires gentleness, patience and pacing. I never realised just how fully exhausting showering can be. I’ve cooked Christmas dinner for my family on my own for many years, enjoying the management and busyness and drama and sense of achievement when we’re all sat down and tucking in. Last Christmas I had to do it very differently, cooking several things in stages the day before, and relying on family members to chip in and help.
I’ve gone from heading out to hike the local hills for an hour and a half every single day, to setting foot outside my home once a week – to attend my therapy session, on a Saturday morning. Unless there’s something important that I must leave the house for, such as a medical appointment or meeting at my son’s school, I don’t. I stay in, and I rest. I do my best to find things to feel happy about as I stay home, which is a beautiful home, but sometimes I can’t stop the tears from falling, which turns into an ironically exhausting sobbing session before I’m able to pull myself back together again.
I’m sick of resting. It’s fucking boring. No-one tells you just how boring it can be to have to move through life slowly, sitting to rest regularly, resting pre-emptively, resting after climbing the stairs, resting just because that’s what you’re forced to do in order to stave off a fully debilitating crash, resting day in and day out. I want to be back to my old self, the person who would get up early, lace up my shoes, pop a podcast on through my hearing aids and stalk the local hills with menace, drinking in the wonderfully frosty morning air. But that’s in my past now, and I have to try and face life as a new type of person, as overwhelmingly difficult as that’s proving to be.
Available Treatments and the Long-term Outlook
Surely, there’s something they can do. A cure will be on the horizon. Some medication to help, in the meantime.
No, unfortunately, there’s nothing. There isn’t even a way to officially diagnose M.E., it’s a case of ruling everything else out, and possibly fighting your corner long enough that medical professionals frankly get bored of hearing it and cave to the pressure.
The only way is through. This illness requires management to be manageable. The long-term outlook is fairly bleak, I can’t lie – to you, or to myself. With the sudden onset of M.E. materialising as a devastating crash for almost two weeks last year, I know I have to do whatever it takes to avoid being in that position again. That means pacing through any activity I have to undertake, and resting whenever possible, and not pushing myself into over-exertion.
My previously ruling sentiment of no pain, no gain doesn’t apply here. It’s more like more pain, deeper crash, bleaker outlook for life with this chronic illness.
Despite no treatment or medication being available for M.E., I found out about the Visible band and app soon after that first crash into life with chronic illness last year. This isn’t an ad, and not everyone with M.E. finds Visible helpful. At a basic level, Visible is an app where you can track your symptoms and this gives you data you can refer to or share with your medical professional. I paid to get the armband (this has since upgraded to a wristband, which is preferable to me) and unlock the premium features of the app. It isn’t cheap – I paid just under £200 at the outset, and it’s an annual membership subscription thing. If the lump sum isn’t doable, you can pay monthly.
I used to wear Fitbit to help me reach my fitness and exercise goals, but developing M.E. and wearing Visible instead has been the best move for me. Fitbit isn’t designed for people with chronic illness, Visible is. The app, connected via Bluetooth to the wristband, tracks my heart rate in real time and sets custom heart rate zones so I can see if I’m in my personal rest zone, activity zone or exertion zone. Going over my personal daily ‘PacePoints’ (similar to the Spoons theory) puts me at higher risk of PEM and a crash. Seeing my heart rate in these zones in real time, during activity, helps me know when I should take a break, sit down, or completely stop and rest.
For some people, I get that seeing all this data and having the notifications on your phone can add to stress levels and, ironically, cause more exertion from the emotional and cognitive load. Personally, I’d rather know and monitor how my day is going, rather than worrying about trying to pace and navigate the illness without that data.
A recommendation which frustrates me, and which is quite honestly wrong and damaging, is graded exercise therapy. M.E. isn’t a case of having a deconditioned body. You can’t exercise yourself out of it. In fact, attempting exercise and body training can worsen and prolong the condition. Thankfully, graded exercise therapy is slowly fading away as official advice as help or treatment for M.E. Newer clinical perspectives and studies* support what people with M.E. have voiced concern about for many years, which is that pushing oneself to do exercise with this illness causes short-term PEM and crashes, and long-term damage.
I don’t need attempts to “fix” me, I need validation and support as I do my best to live with this chronic condition.
The Psychological Impact of My Chronic Illness
Where to start with the devastating psychological impact of living with M.E…
It truly is devastating. Life looked a certain way, before; bright, active, hopeful. Now, life is darker, restricted, depressing.
I’ve gone from running a busy life juggling motherhood, my relationship, my sex life, my hormones in perimenopause, my fulltime self-employment and my exercise and fitness goals, to a needle-scratch moment of life where the record was changed without warning or consent to an ominously slower pace.
Of course I’m upset. Wouldn’t you be?
Most of the time I try to keep myself as busy as I can without exerting too much energy, which would tip me into PEM and a crash. When that isn’t possible, I do my best to distract with fun sedentary activities, like watching all the TV shows and films that are available at my fingertips in this wondrous age, listening to my favourite podcasts through my hearing aids, connecting with friends on my community groups online or via social media. Often, I’ll have to do absolutely nothing for long periods, where I just lie on the sofa or in bed, “doing my time” as I call it.
I have hobbies like reading, Lego, tabletop gaming and a renewed interest in witchcraft that I can indulge in at home. My youngest son still lives at home, and is level 3 autistic, so he takes a lot of my focus and is an absolute joy.
Sometimes, as I’ve already mentioned, I can’t stop the tears from falling. Everything seems to close in on me as if I’m trapped in a shrinking cell and I’ll never be free. The reality of my life, and how much it’s changed, and the lack of any hope on the horizon, chokes me with pain, and it spills out of me in hot tears and keening wails. These moments are a pressure valve, where the emotional steam is released. It helps, a little. I go to private therapy every week, too. That helps a lot. So does my husband of course, who is ever patient, kind, gentle and understanding. It’s tempting to say I don’t deserve him, but I’m working on being kinder to myself, so I won’t.
Surprising Positives of this New Way of Living
As I have been living with M.E. for almost a year now, it’s surprising to realise it isn’t all bad. It’s probably surprising to you as well, especially after reading the incessant gloom of the last few sections. These won’t resonate with everyone, of course, but I’ve noticed some small positives to my life with chronic illness.
I can’t keep myself busy anymore. Staying distracted from my deeper issues through constant activity simply isn’t an option. I have previously written about the effects of sitting with my feelings in early sobriety, but doing it without the option to work, walk or run it off is something else entirely. Being forced to do absolutely nothing while you sit and confront all your inner demons that seem to have been lurking in the shadows of your mind for many years for exactly this moment is terrifying. I used to walk, and work, and drink, and forget. Now I sit still and I listen. I don’t have a choice.
You were saying about positives? I hear you querying. Yes, being literally unable to distract from my deeper issues is an overdue positive in my life. Not only am I forced to sit still and listen, in order to heal and move forwards I’m forced to do something about them. I don’t hide from the cascade that falls from the dusty closets at the back of my mind. I drag it all into the light, getting a good look at it all, write what I can in my journal, and carry it into therapy.
I’ve heard about “doing the work”, and now I’m realising “the work” isn’t related to superficial aspects for external validation like appearance, weight, fitness or productivity. “The work” is my relationship with myself. Facing up to the realities of who I am, and why I am. Forgiving and integrating all past versions of myself. Being kind to myself, in deeper and more meaningful ways than taking myself on a date or running an extra deep bubble bath. Healing. Growing.
Chronic illness has forced me to stop and listen to the voices I was drowning out for so many years. It has given me the time and opportunity to encourage those whispers to reveal themselves as howls of fury and grief, searing messages from deep within me that drive my personal journey onwards with renewed courage, vulnerability and unflinching honesty. There isn’t a cure for my chronic illness, but nothing is stopping me from healing my mind and soul.
Why I’m Sharing My Chronic Illness Story
The main reason I wanted to write in depth about living with chronic illness, living with M.E., is because I wanted to create a dedicated space for this overarching factor of my life as it looks now. I want to share the raw truth of myself with my readers. Writing this has been painful, distressing, confronting, but at the same time, it felt necessary. Putting my new reality into words means an acceptance, of sorts, and helps me to process everything.
Another reason I wanted to write about my life with M.E. is my sincere hope that it finds the right eyes. That there will be a reader who has felt alone with this or a similar burden, and after reading this, doesn’t feel quite as alone anymore. The isolating nature of chronic illness feels like additional cruelty on what is already a brutally merciless way to live. Even if you don’t have the energy to reach out on social media or by email, please know that I’m thinking of you and I’m sending love.
Growing Into a New Me
M.E. hasn’t just changed my energy. It has changed my relationship with time, with my body, with my entire identity. Living with chronic illness has forced a radical shift in how I measure my worth. I’m coming to understand that I deserve kindness, from myself as much as from anyone else, and that I can rest without guilt.
Day to day it might feel like I’m doing nothing, I’m going nowhere and I’m standing still. Ok, sitting still. But glancing back inwardly, over the past 12 months, I’ve been sprinting forwards in other ways. I’m on a different track, in a different field, with a different view. My body may be chronically ill, but I’m committed to intense soul work which will heal me on a much deeper level.
*There was a NICE guideline update in 2021, which explicitly advised against offering graded exercise therapy as a treatment for M.E. and placed much stronger emphasis on pacing and avoiding post-exertion symptom exacerbation. That shift reflected both growing biomedical research and years of patient testimony.
