I never thought I would start writing from my toilet, but here I am. Honestly, it’s not the strangest place I’ve ended up on a Friday or Saturday night. Tonight has been rough—actually, the past few weeks have been incredibly tough. From falling over and passing out to arms covered in pinpoint bruising, not to mention the swelling in my mouth, lips, and tongue. Many of you amazing people have reached out to offer advice, but first, I need to tell you something—I’m petrified to find out what’s wrong.
Even looking at my calendar fills me with anxiety, as it’s packed with appointments with specialists. Every visit to a doctor carries the fear that I’m about to receive devastating news. Living with Myalgic Encephalomyelitis (ME) means constantly waiting for the next shoe to drop, the next symptom to worsen, the next moment of clarity to slip away. It’s terrifying.
I often wonder—am I just incredibly unlucky, or am I somehow being punished for past mistakes? If you’re thinking, “You’re not an awful person,” I appreciate it, but it doesn’t feel that way. After all, if I were truly a good person, wouldn’t I be surrounded by people who love and support me on nights like this? Instead, I’m sitting here alone, writing about how lonely and unhappy I feel.
The Mental and Physical Toll of Living with Myalgic Encephalomyelitis
All night, I’ve been lying next to my husband, silently crying. The tears fall, and the odd sniffle is brushed off as hay fever. This isn’t the first time—far from it. The emotional toll of living with Myalgic Encephalomyelitis is just as relentless as the physical pain. I know I’m not alone in feeling this way. Many ME sufferers struggle with the isolation, the depression that others dismiss as something we can just “snap out of.”
To those who believe ME is just about being tired, let me offer some perspective: You could place a naked Tom Cruise in my bed, drenched in sweat after hours of steamy romance, with a massive diamond ring waiting on the nightstand for my enthusiastic “yes.” I’d still roll over and ask him to grab me a lolly ice before he leaves. That’s the level of exhaustion and disinterest in life that this illness brings.
How Myalgic Encephalomyelitis Impacts Daily Life
I have missed out on so many life moments—both joyful and heartbreaking. Weddings, funerals, births, graduations—including my daughter’s university graduation. The reality of living with Myalgic Encephalomyelitis is that your life is dictated by your illness. It decides when and if you can participate in the world, and more often than not, the answer is “no.”
Every single aspect of my day is controlled by this disease. I don’t spend hours lying on my left side staring at a white wall because it’s comfortable—I do it because it’s the only position I can tolerate. And even then, it’s not comfortable. There is no comfort with ME.
The pain isn’t something you can push through; it’s the kind of pain that stops you in your tracks, steals your breath, and leaves you drowning in silent tears. People with ME become experts at hiding this pain until they physically can’t anymore. For me, that usually means breaking down in a flood of tears, clinging to tissues that have long since stopped being effective.
The Weight of an Unseen Illness
Recently, I read about a woman who travelled to a country where assisted dying is legal. She wanted to take back control over her own life. I understand that. When your days are spent in a silent room, unable to care for yourself, unable to contribute to the world, you begin to wonder—what do I have to live for?
My world consists of four walls. I can’t clean myself. I can’t cook for myself. I can’t visit friends or family. The loneliness is suffocating. The guilt is overwhelming. Every time I call my husband or my daughter, their first reaction is panic—assuming something is wrong. What kind of life is that for them? For me?
If I knew with certainty that my daughter would be okay without me, that my absence wouldn’t scar her beyond the normal grief of losing a parent, I might lean toward saying goodbye. My husband, too—I know he’d be better off without the burden of my illness. Arguments reveal hidden truths, and I see it in his face. He deserves happiness, and I fear I can never provide that for him.
Fighting for a Win
Despite it all, I want to live. I want to feel better. I want to lose weight, rebuild my confidence, regain a career, find happiness again. But ME won’t allow it. Something as simple as taking a shower leaves me too exhausted to function, my body overheating and dripping in sweat—just one of many side effects of my medication. Add in the weight gain, and my self-esteem is shattered before I even leave the house.
So how do I change this? I can’t exercise—it triggers post-exertional malaise (PEM). I can’t cook for myself, so my diet consists of cereal or jam on toast. I desperately need help, but even when I had assistance, it wasn’t at times that suited my body’s unpredictable limitations.
I have a dream, and I am fighting for it. But living like this, I can’t handle another day, let alone another year. Still, I hold onto hope—because I have to. Because I want to make a difference. Because even when I feel like I have nothing left to give, maybe, just maybe, my words can help someone else feel less alone.
Final Thoughts on Living with Myalgic Encephalomyelitis
Living with Myalgic Encephalomyelitis is a battle—one that too many of us fight in silence. I don’t have all the answers, and right now, I don’t even have a clear path forward. But what I do have is a voice. And as long as I can, I will use it to spread awareness, fight for better treatment, and remind others that they are not alone.
If you are struggling, please know that your pain is valid, your fight is seen, and you are not alone. We may be isolated, but together, we are stronger. You can contact me directly if you need a friend, just head to my contact page. Contact me
