Wolf 1 - Vicki 0

Headache, ulcers, mega fatigue, swollen fingers, mass confusion.

Learning your routine

Dear Wolf,

You may turn up uninvited but I'm beginning to recognise the signs you're about to visit.

I read this from Molly's Fund today...


Whilst generally true, we seem to have our own pattern:

1. A sore throat but not a virus/cold
2. Insane heat surges and sweating
3. Fatigue beyond fatigue
4. Mouth Ulcers (and sores in eyes)
5. Bruise easily and cuts/ scabs flare up
6. Ridiculously dry eyes
7.  Flu like aches especially in the lower back
8. Acid tummy
9. IBS symptoms
10. Muscle pain
11. Brain fog
12. Swollen joints

Sometimes you bring other things like migraine, rashes and toenails falling off! Though these are intermittent.

Is learning your pattern part of the battle and I know when you've invited yourself?

Back off Lupus no one invited you.

Back off Lupus no one invited you.

       

 My first attempt at a duologue between the Wolf and Me. Inspired by my session with Nick at the Revealing The Invisible@Gulbenkian workshops.At Vicki's house one day


Knock knock...
V:  Whose there?
W: Me.
V:  Whose me?
W: Wolf.
V: Aren't you supposed to try to trick me by dressing up or something?

W. Maybe.

Pause...

        V: Who invited you?

        W: I can't remember

        V: oh...

        W: Are you going to let me in?

        V: Erm Ok.

 Vicki opens the door

        V: oh you really are a wolf!

        W: Well what did you expect?

        V: Can anyone see you, or is it just me?

        W: Mostly you...

        V: Wait there I'll put the kettle on

Vicki turns back and makes tea in the kitchen, she chats away about tea and cake. In the meantime Wolf begins to make herself at home. She lazes on the sofa and idly begins to chew on Vicki's Diary. Vicki returns with a tray of tea and cake.


        V: What are you doing?!


        W: Snarl, grrrrrrrrrr, snap!

Vicki snaps back her hand
        V: Erm thats my diary! Please dont eat it, it's very important, it has all my stuff in it that I   have to do, the places I have to go...
       W: grrrrrrrr
       V: Maybe a piece of cake instead?

Wolf takes the cake and drops the diary to the floor. Vicki retrieves the soggy, chewed up pieces.

     V: What did you do? You've eaten whole days?! I was really looking forward to that... why couldn't you have eaten that week instead, I had a gap? Oh no I have so much to do... I think it's time you left.
    W: Sorry did no one tell you, I'm here to stay!

A day with the pack...

Dear Wolf...

Today is a very inspiring and fortunate day spent with a pack of wolves. Not all lupies, but all with interest in or connection to hidden/invisible/chronic illness.

A while ago I was introduced to Katie, through one of my University students. We went for tea and found out that we both had Lupus and theatre in common; both blessings and curses in themselves!

Katie was beginning to explore the notion of chronic illness through creativity and subsequently set up 'Revealing the Invisible'. Their first venture, with funding from V.Inspired, was launched in The Pie Factory, Margate as a visual art exhibition inspired by chronic illness:

'Revealing the Invisible is a not-for-profit organisation that aims to use art to explore the ‘invisible’ aspects of chronic illness, including chronic fatigue, chronic pain, depression and isolation. RTI events allow opportunities to those with chronic conditions to find ways of expressing themselves, increase understanding among ‘healthy’ people with accessible art and inspire discussion of chronic illness in public.'

This month we were lucky to get a little more funding to be included in the next stage of the project. With this we launched Revealing the Invisible@ Gulbenkian. 

And so today we got to talk and play and eat biscuits. It was inspiring, motivating and exhausting. Watch this space for a write up and more to come...

Thank you Wolf for new people x