29 October is World Stroke Day. Cue the awareness campaigns about spotting the signs and getting to hospital fast, which is brilliant, genuinely, because it saves lives. But stroke recovery is the bit we talk about far less.

But nobody mentions the bit after the credits roll. You’ve survived, the hospital cards dry up, and you’re left thinking: lovely. Now what?

This is the honest, unfiltered version of stroke recovery, from someone living it. Pull up a chair. Or a rollator.

Quick reminder first: FAST

• Face: has it drooped?
• Arms: can they lift both?
• Speech: slurred or confused?
• Time: call 999. Don’t wait, don’t Google it.

What does stroke recovery actually mean?

First up is rehab. Depending on things like your fall risk, that’s in hospital or at home. Mine was at home.

I got eight weeks with the Early Intervention Stroke Team: Occupational Therapy, Physiotherapy and Speech and Language Therapy. It’s intense, it’s physical, and it’s exhausting. You’re fighting fatigue and being put through proper exercises. Every. Single. Day.

Then the funding runs out. Eight weeks, and it’s “good luck!” Suddenly you’re standing in the wreckage of your old life without a manual.

That’s when my stroke recovery journey actually began.

I went back to work after 10 weeks. The plan was an eight week phased return. I never got past phase one: four hours, mornings only. I was lucky, mind. I had a supportive manager, I already worked from home, and I knew the processes and software inside out. That got me two years of work after my stroke, until I was made redundant. Now GlitchyButCute is my focus, and honestly, I’m not mad about it.

Why is stroke an invisible injury?

Because it happens in your brain, and nobody can see your brain. I can look completely fine and feel like a dropped phone.

A lot of the damage stroke leaves behind is cognitive, neurological or fatigue-related. You can’t see aphasia, processing problems or the battery hitting zero halfway through a conversation.

People forget. People expect you to “get better”. But brain injury after stroke doesn’t work like a broken arm. The damaged brain tissue doesn’t just grow back. There’s improvement, absolutely, but there will always be pre-stroke me and post-stroke me.

My friends were quick to visit straight after my stroke. Most have since drifted off. I can’t do what I used to, and my accessibility needs rule out places I once went. Turns out “see you soon!” has a shelf life.

How does neuroplasticity help after a stroke?

Your brain is a clever little sod. After injury, it can reorganise, strengthen existing pathways and form new connections, allowing other areas and networks to compensate for some lost functions. That’s neuroplasticity after stroke.

It does this by itself, but repetition, therapy and time all help. What you lose depends on exactly where the stroke hit and how much damage it did. And recovery doesn’t come with a neat expiry date. The brain keeps adapting, just usually less dramatically over time, like a very determined electrician rewiring the house while you’re still living in it.

Yes, I put it on a t-shirt. Neuroplastic and fantastic. It’s the only upside of the whole thing and I’m milking it.

Why “back to normal” can be the wrong goal

“Back to normal” is the dream for most survivors, and I get it. Some lucky people do get back to a version of normal.

For loads of us, the effects of stroke come with a much bigger guest list. Here’s mine:

• Right side weakness and pain: I have use of it, but it’s weak, and I’m right handed. Brilliant.
• Weak grip and lost fine motor control: so are most jars.
• A stammer from apraxia of speech: my mouth can’t always find the shape of the word.
• Aphasia: the word is right there and I cannot get it out.
• Short term memory changes
• Fatigue: the kind sleep doesn’t fix
• Epilepsy: a gift from my stroke, with no receipt
• Lots of medication: each with side effects of its own

With all that going on, there’s no return to my old life. That’s a hard sentence to write, and it’s still true. Finding your new normal after stroke is the real job.

Nobody told me about the side quests either. Hospital appointments, medication reviews, benefit forms, adapting the house: it’s a full open world and I never bought the DLC. No one told me about the side quests, and that’s exactly why I’m telling you.

Grieving the person you were before your stroke

It takes ages. There’s grief. There’s anger. There’s a lot of “why me?”. A proper stroke of bad luck, as it turns out.

What helped was talking to other young survivors. Different Strokes is a charity for working age stroke survivors, and it runs fortnightly Zoom calls. They were invaluable, because those people just get it, and I didn’t have to explain a thing.

And then everything else goes too:

• Work: “what do you do?” is one of the first things strangers ask. Work is part of our identity. Losing the job you did is tough, and losing all work can be brutal.
• Money: your household income drops and you end up relying on benefits. Applying for PIP (Personal Independence Payment) and LCWRA (Limited Capability for Work-Related Activity) was dehumanising and often traumatic. Nothing says “welcome to your new life” like a form that makes you prove how bad your worst days are.
• Hobbies: the things that gave you joy and respite become difficult or impossible.
• Driving: after a stroke you must not drive for at least a month. Some people get back behind the wheel, some need adaptations, and some, like me, lose the licence altogether. Mine was revoked because of my epilepsy.
• My hair: it was knee length, usually in a braid, and a huge part of my identity. It was a lot of hair. I couldn’t wash it or braid it any more, so it got cut to my shoulders. I cried. Then I donated it, because if I had to lose it, it was going to a little girl who’d lost hers. That thought still gets me.

It can feel like everything that makes you you has been stripped away. But as Buffy the Vampire Slayer said when Angelus asked what was left once everything else was gone: “Me.”

Building a new life after stroke

At some point, acceptance turns up, usually late and without apologising. Slowly, you start adapting and building life after stroke on your own terms.

• The hair: my shoulder length hair is now bright pink. Take that, grief.
• Jim the rollator: my OT recommended one for walking. I named him Jim, and he’s covered in dangly things that make me happy.
• Rosie the wheelchair: I could only walk so far before pain and fatigue ended the party, so eventually I accepted I needed a wheelchair. She’s a pink Whill C2, and she’s very much a work in progress. A talented friend with a 3D printer has made me a tray and lights for the back. She’s basically a very slow, very fabulous float.
• My people: I grieved the ones who left. Then I realised how lucky I am with the ones who stayed. They get me places and help me do things I couldn’t manage alone, and I love them for it.
• Support: I was fiercely independent, I lived alone, and I wanted to keep it that way. So I asked for help, which is the most independent thing I’ve ever done. I had a Care Act Assessment, got aids for my home like a bath chair, and was referred to Social Services for a package of care. Carers come every day. They help me wash my hair, do my laundry and get out and be social.

The old me tried so hard to fit in. The new me stands out, with pink hair and bright clothes, and zero interest in blending. Advocacy became my focus, for stroke survivors and disabled people in general. I make things for the GlitchyButCute shop to bring joy to other disabled and chronically ill people, including the slogans in this post. Because if I’m going to live in a plot twist, I’m putting it on a hoodie.

Recovery doesn’t have an expiry date

You’ll hear plenty of arbitrary deadlines for stroke recovery. Six months. A year. Two years.

Yes, progress often slows. But slower is not stopped.

Stroke recovery isn’t a finish line. It’s a messy, ongoing, occasionally glittery process.

If you’re a survivor: you’re not failing because you didn’t “bounce back”. If you love one: please keep turning up after the hospital cards stop.

Want something a little less serious? You can find my World Stroke Day collection here.

Affected by stroke? The Stroke Association and Different Strokes are good places to start.