We’re often told Christmas is “the most wonderful time of the year.” But what happens when it isn’t? When everything seems to go wrong—especially while living with a disabling condition like Myalgic Encephalomyelitis (ME)—the pressure to feel festive can be unbearable.
A Christmas That Went From Bad to Worse
Christmas 2023 was meant to be special. I had plans, I had hope—but instead, it unraveled into a physically and emotionally devastating experience. Living with severe ME, a condition that has left me completely bedridden for over a decade, means that every task—big or small—has to be carefully planned and energy-budgeted. And yet, even with all that care, things can fall apart in ways that people don’t see.
We had put off house jobs for years because I simply couldn’t manage the planning or people in and out of the home. But last year, we tried to get everything done before the holidays. Repairs. Painting. Flooring. It snowballed fast—and what was meant to make life easier ended up breaking me.
The Hidden Toll of Stress When You Live with Chronic Illness
When you have ME, it’s not just “fatigue”—any stress or exertion can trigger a massive crash. My body doesn’t recover the way a healthy body would. Emotional stress, overstimulation, and poor sleep can all lead to physical collapse. That’s what happened to me. I ended up unable to eat, speak, or even sit up properly. For days, I was barely conscious—only waking to take medication before slipping back into exhaustion.
This wasn’t just a ruined Christmas. It was a setback that could take months to recover from.
Renovations Gone Wrong – And a Company That Didn’t Care
We needed new stairs carpet and kitchen flooring. A local flooring company came out, measured up, took payment, and confirmed installation dates. We coordinated everything around my husband’s retail manager shifts and my daughter’s visit home—already a complex task.
But on the day of fitting, only the stairs were done. No kitchen. No explanation.
Despite several clear messages from me, confirming we were having both areas done, no one clarified that the kitchen wasn’t included. Even when I asked if we should clear both areas ahead of time, they said nothing. My husband exhausted himself ripping up the old flooring alone after a long shift—and for nothing.
When I messaged the company to ask what had happened, the response was cold, defensive, and dismissive. It was 23rd December, and there was no apology—just blame placed on me for not reading the invoice more carefully.
They couldn’t—or wouldn’t—help us fix it before Christmas.
Living with ME Means Missing Out, Even When You Plan Everything
If you’re healthy, a delay might be annoying. But if you’re chronically ill, it can be catastrophic.
I couldn’t leave my room. The flooring work meant I had no safe access to the kitchen or stairs. No access to my wheelchair. No room to host Christmas dinner. No decorations. No hot chocolate trips or matching PJ photos. Just guilt, pain, and disappointment.
I had waited all year to see my daughter and give her the magical Christmas she deserves. Instead, I missed it. My husband couldn’t even bring himself to sit at the table without me. And I couldn’t even give my usual hug to my mother-in-law when delivering dinner to her house.
The Emotional Fallout of a Lost Christmas
People often underestimate how much ME and other chronic illnesses strip away from your life. When things go wrong, they don’t just mess up a day—they can derail your health for weeks or even months. The emotional fallout is enormous.
We didn’t decorate. We didn’t laugh. We didn’t get to be “normal” for a day, like we so often try to pretend. Even our annual joy—watching Alfie excitedly demolish his Christmas dinner—felt heavy.
And yet, the company at the centre of it all just shut their doors and carried on. No follow-up. No care.
A Call for Community-Led Recommendations
One thing I’ve learned from this is: disabled and chronically ill people need better networks of trusted services. So I want to start something right here, on my blog.
👉 If you’ve had a positive experience with a business that was kind, accommodating, and disability-aware, please leave their details in the comments. Tell us what city they’re in, what kind of business they are, and how they helped you.
Let’s build a directory of businesses that deserve our support—because too many of us have been let down.
A Final Word
I know this post is late. It’s taken me weeks to recover enough to write again. But if you’re reading this, I hope it reminds you to:
Never ignore your needs, even if it feels like you’re being “too much”
Double-check everything, and ask for help when you can’t do it yourself
And most importantly, know that you’re not alone
To anyone else who had a difficult Christmas, I see you. If your health stole your traditions, your sparkle, or your joy—I understand.
Here’s to a softer, more supportive 2024. My goal is to turn this pain into purpose and make life just a little easier for people like us.
Sending you love,
Alisha 🫶
