Sunday 18th October 2026, Wheely Unhappy Days

I'm writing this at 6am. I've been awake since three.

This blog is called Wheely Happy Days, and I mean it most of the time. But today I'm going to be honest, because I think some of you need to hear that it's not always happy. Sometimes it's Wheely Unhappy Days.

This isn't a pity post. I don't need pity, and I'm not attention-seeking, being over-dramatic, or making a drama out of how I feel. I'm not like that; that's NOT me.

I'm writing this because these feelings are coming in stormy waves, and right now I can't find my way back to shore.

It's been almost three years. Three years of a long-term illness, of new symptoms, new tests, and still no answers. Waiting for referrals, waiting for treatment, waiting for my life to start again.

This week I've had two non-epileptic seizures in three days. One of them happened in public. If you've never had one, it's hard to describe how much it takes out of you, not just physically, but the fear, the exposure, the feeling of your own body letting you down in front of strangers. It leaves you raw for days.

And on top of all of it, I lost my beautiful Myka suddenly a few weeks ago. She always knew when I was ill, before anyone else did, and she never left my side. I still can't bring myself to collect her ashes. Scarlett and Jasper are a great comfort, and I'm so grateful for them, but nothing quite fills the Myka-shaped space.

I used to be a positive person. I still put that hat on, because that's what Spoonies do. We hold each other up. But underneath the hat, I'm tired. Tired of fighting. Tired of searching for silver linings. Tired of everything having consequences.

I love my family, my friends, my Spoonies and my carers so much. But under the wig and the smile we paint on, there's nothing left.

The hardest part isn't the body. It's not trusting my own thoughts and feelings anymore. I feel like I'm always wrong. Like I'm annoying. Like I live in chaos and don't have the energy to fix it the way I once did.

And when I try to talk about it, it ends in conflict, or I watch someone's eyes glaze over. I'm sure it's my fault. I don't trust myself anymore. So I stop talking. And then I feel so alone.

I don't know what I'd do without Spoonies. But right now I feel like I'm right back where I was when I set it up. Reaching out in the one place that's meant to be my safe space feels impossible because I'm supposed to be the strong one.

Our Spoonies and Carers communities are my greatest achievement. I'm so proud of what we've built together. But right now I don't feel like I'm any use to them. I feel like it's failing, and like I'm failing them.

So maybe this post is me reaching out.

I've even started thinking about stepping down from council and stepping back from all my volunteer commitments. Right now I don't feel like I'm of any use to anyone. I know that's the exhaustion talking, but it's loud, and some days it's all I can hear.

I don't have a neat ending for this one. No lesson, no bright side. I just want to be happy again. I want my life back.

If you're reading this at 3am too, feeling like you've fallen through the trapdoor under rock bottom, I see you. You're not weak. You're not making it up. You're just carrying too much for too long.

Maybe that's enough for today. Not fixing it. Just saying it.

If you're in the same boat, you don't have to wait until it's a crisis to reach out. Here are some places that get it:

Samaritans – call 116 123, free, 24/7. You don't need to be in crisis. "I'm lonely and tired" is enough.

Shout – text SHOUT to 85258 if talking out loud feels like too much.

NHS 111, option 2 – for urgent mental health support in England, any time of day or night.

NHS Talking Therapies – you can refer yourself online without seeing your GP first. Many areas offer support specifically for people living with long-term conditions.

Your GP – tell them about your mood, not just your symptoms. Low mood and chronic illness often go hand in hand, and you deserve support for both.

Mind Infoline – 0300 123 3393, for information and signposting.

Peer support – sometimes the best listener is someone who lives it too. Burntwood Spoonies Connect is here, and so are similar groups across the country.

And a few small things that sometimes help on the bad days:

Tell one person the truth, even if it's just, "I'm not okay today."

Write it down. It doesn't have to be shared to count.

Lower the bar. Some days, getting through is the whole job.

Rest without earning it.

KOKO 💜

Sha