The Blog!

Your Home Or Your Life

I’m incredibly fortunate to own my home. I know that for many people the current crisis in housing makes this impossible, and is likely to do so for future generations. I watch people I care about being held hostage to … read more

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Who Has Special Needs?

I can’t remember how old I was when I first heard the term ‘special needs’ or when it was first used to describe me. It’s been a persistent presence throughout my life – from when it was used about me … read more

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Pillars of Support In A Vicious Cycle

Fran pulled the covers tightly across my body. She sat next to me on the bed, her hand applying gentle pressure to my head. Exhausted, my body moved erratically, my forceful, regular and rhythmic vocal tics punctuating the quiet darkness … read more

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An Appointment With Hope

One way or another I’ve had quite a few medical appointments recently. Some have been OK, but some have been frustrating.

As someone whose body is noticeably different from what health care professionals are trained to expect, I’m aware … read more

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From Bump to Baby

Yesterday something incredible happened – Fat Sister’s bump became a baby.

I’m now the exceptionally proud aunty of a beautiful wiggly niece.

Fat Sister, King Russell and the little wiggle are all doing well.

As I held her in my … read more

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Tears and Tiredness

A week ago I had a minor operation. It involved a general anaesthetic and a small incision in my chest not too far from the spot where my chest-thumping tic hits it hundreds of times a day.

I’m generally mending … read more

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If Your Body Were A Landscape What Would It Be?

It’s late, I’m in bed, and my body’s been exceptionally wriggly for more than nine hours. I’m exhausted and need to sleep, but despite several rounds of emergency medication I’m still just as wriggly.

But I’ve just seen a tweet … read more

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A Rowdy Night In

I’ve been resting at home after a minor operation on Friday to change my pacemaker battery. As a result my sleep has been a bit disrupted by pain and discomfort in my chest. But last night it was disrupted by … read more

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Solidarity For Everyone - Even Lamp-Posts

It’s 6am, early morning light is creeping in under my pale blue blind, and through the gap I get a glimpse of the garden outside.

I know the lamp-post’s out there too, but it went off about an hour ago … read more

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Exhibit Biscuit

It’s the second day of our three-day take over of Tate Modern’s Tate Exchange space and we’ve transformed the fifth floor of the new building into Biscuit Land, with loads of different interactive areas and activities. Once a day we’re … read more

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