Keys, Crystals and a Gilded Cage

Hi friends, I hope the week has been gentle with you. It’s been a while again (sorry!) – I’m hoping to be a little more regular in the coming weeks.

This one’s a mix. There’s some joy in it, a proper day out, and a few things I’ve been holding in for a long time. If you live with a chronic illness and rely on family to get by, I think parts of this will feel familiar. I’ll start with the good bits.

Some keys for a close friend

A close friend of mine has just bought her own flat, and I honestly can’t stop smiling about it.

It hasn’t been easy for her. Her first attempt fell through. This time, the sellers played up at almost every step. Plenty of people would have lost their temper or walked away. She kept her cool, kept going, and now she owns a flat. Her own front door, her own keys.

She’s one of the best people I know. Watching her do this well makes me so happy, and having her in my life matters more than I can easily put into words.

So, if you’re reading this: you did that. Every bit of it. I’m so proud of you, and I can’t wait to see you settle in.

A shout-out to my work wife

While I’m handing out gratitude, my bestie deserves a mention too. She started as my work wife, the person who gets me through the working day, and somewhere along the way we became proper friends outside of work. I’d like to think we can tell each other anything.

I’ll be honest: without her, I would have quit by now. Working full-time from bed with ME/CFS is hard enough, and having someone on my side every day makes more difference than I can say. Thank you. You know who you are.

A day in the Crystal Maze

Then came my own bit of escape. I went to the Crystal Maze Live Experience in Manchester, in my powerchair, for the whole thing.

Getting there was the first puzzle. It’s a 3 hour 40 minute car journey each way. I thought about the train, but after past experiences I couldn’t face relying on six to eight separate assistance bookings, where any one of them failing could leave me stranded, unable to reach the venue or get home. So it was the car.

The maze itself was amazing fun. The staff did everything they could to make it accessible. They knew me by name, they were incredibly friendly, and they worked hard to make the day as smooth as possible.

It wasn’t seamless, though, and if you’re a wheelchair user thinking of going, here’s what I found:

• Narrow doors. My powerchair is 62cm wide, which is on the slim side, and it still struggled in a couple of rooms. A wider chair wouldn’t get into some of them at all.
• A room with sand. Worth knowing if your chair doesn’t cope well with it.
• The back routes. To get between zones I was taken through the back doors and the areas where they build the props. Seeing behind the scenes was genuinely cool, but it did break the spell a bit.
• Missing a room. Because of the escorting process, I missed one of the rooms the rest of my team did.

One thing did sting. It was a work team-building day, and our host, who I’m sure meant well, was infantilising me quite a lot. Enough that my colleagues noticed and mentioned it once we got out. They were really cool about it, which I appreciated. Inside, I was mortified. Being spoken to like a child because you use a wheelchair is something a lot of us know, and it doesn’t sting any less for being well meant.

I’ll write a fuller access guide soon, because the information online is patchy and sometimes contradicts itself.

Then there’s the bill. It’s now been over a week and I’m still unwell from that day. The brain fog is worse, I’ve had migraines, I’ve lost my appetite, my pain is up, and my fatigue has gone through the roof. Most days I’m in bed, so a day like this takes planning, my powerchair, help from other people, and then a long recovery. I’d still do it again, even though it’s never just one day.

Why does a friend’s good news make me feel stuck?

Here’s the part I’ve been putting off.

I’m genuinely happy for my friend. I also caught myself looking at my own life next to hers, and it hurt a bit.

I’m 33 and I live with my parents again. They took me back in, and it’s only because of their help that I can survive and keep working. Mum does most of the day-to-day things I can’t manage. I want this to be the first thing anyone reads in this section, especially you, Mum: I’m very, very grateful.

Grateful and comfortable aren’t the same thing, though.

What a gilded cage looks like when you’re disabled

A gilded cage is a nice place to be stuck, and I want to be fair about how nice it is.

Mum is the reason this house works. She does most of the day-to-day things I can’t, from meals to washing to the hundred small jobs that would otherwise flatten me, and she does it for the whole household. She’s never once made me feel like a burden for it. Mum, I see everything you do, even on the days I’m too wiped out to say so. Thank you.

It’s a cage with privacy blinds, too. I’ve got my own bedroom, and (with permission, I promise) I’ve more or less taken over the office as well. So I have space that’s mine, somewhere to work, and a door I can close. Plenty of disabled people living with family don’t get that, and I know how lucky I am.

Even with the blinds down, the bars are still there. When you depend on the people you live with for almost everything, it’s hard to have a real disagreement. You can’t storm off. You can’t move out. You swallow things.

Underneath it all is one thought I can’t shake. I want to be really clear here: the chance of Mum ever letting me be homeless, and alone, is tiny. I’d have to do something unimaginable, and at that point I’d probably deserve it! The worry is more about how narrow my safety net is. It only has to go wrong once, through a change in circumstances nobody chose, and I could be without a home and without support. The chance of me ever living fully on my own is very low. Without help, I honestly don’t know how I’d survive.

That’s what makes it a cage, however gilded it is.

Waiting for care with no end in sight

Since late July I’ve been trying to get treatment for a personal medical issue. It stems from a traumatic event. The doctors don’t seem to be in any hurry.

What they don’t seem to see is that waiting isn’t neutral. Every time I notice the issue, it brings the trauma back. Every week it goes on, it does more damage, and it’s making my other conditions worse. I just want it to be over with.

I don’t really have anyone who can “advocate” for me when I’m fatigued. The people closest to me are family, and this isn’t something I can share the intimate details of with them. What I’d love is a health advocate or a charity that could help me keep on top of GPs and appointments, and make sure I’m actually being cared for properly, confidentially.

In the meantime, a few things help me a little:

• Writing a short brief before appointments, in case brain fog hits halfway through.
• Asking for contact in writing where I can, because phone calls cost me so much energy.
• Keeping my own notes of what was said and when, because I can’t always recall conversations accurately afterwards.

I can’t be the only one in this position. If you’ve found someone to fight your corner with the NHS, I’d really like to hear how.

Over to you

Have you found a health advocate or charity that helps you keep on top of appointments? If you live with family because you have to, how do you keep a bit of yourself?

If you’re living in your own gilded cage, please know you’re not alone in it. I wrote about some of this in The Loneliness That No One Sees, and about the cost of big days out in From Heavy to Hopeful: What I Found at Pride. For the endless proving, there’s Proving I’m “Disabled Enough”.

With love and hugs,
Jake

TL;DR

• A close friend just bought her own flat after a rough ride, and I’m so proud of her. My work wife gets a shout-out too.
• I went to the Crystal Maze in Manchester in my powerchair. Brilliant staff, narrow doors, a sand room, one room missed, and a well-meaning but infantilising host. I’ve been unwell for over a week since.
• At 33, I live with my parents and rely on them to survive. Mum keeps everything running and I’m hugely grateful, but it still feels like a gilded cage, even with privacy blinds.
• Since late July I’ve been waiting for treatment linked to a past trauma, with no one to advocate for me.

Sources & Resources

• The Crystal Maze: Access needs FAQ (Manchester)
• Patients Association: helpline for advice on NHS care
• Healthwatch: your local Healthwatch can point you to advocacy services near you
• NHS: PALS (Patient Advice and Liaison Service) for hospital care
• Mind: information and support on trauma and mental health