Heat Wave

Dear wolf,

It seems as the week gets cooler, I get hotter. Got that strange poisoned flushing feeling in all my skin. Suddenly pouring with sweat in the most awkward situations. Like wearing a fur coat in full sunshine.


Is this how people spontaniously combust?

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

Brain Fog

Dear Wolf

Never in my life have I felt thick. I know I'm no genius, but I've always held my own. I have an inquiring, investigative and imaginative mind. I am capable when I want to be and academic if I try.

That was until recently. I sat in my second Rheumatology appointment, with my second Rheumatologist (long story), and he asks if I get brain fog. I had bought Paul along, because of not being good at remembering things people were saying, and this prompted the question. 'Hmm' I said and was about to ask what it was when Paul answered for me with a resounding 'yes'.

Thinking about it (or not as the case may be) I had found an increasingly difficult to think straight. Quite often tired to the point of swimming through a haze just to keep upright, gasping like a fish out of water, sick with the desperate need to focus. My senses leave me and I can't hear what people are saying or see things in front if me.

Then it started in my speech. I began to use wrong words, funny words that make everyone smile. Earlier I was cleaning the fire and said I need to take out the 'hash' instead of 'ash'. Sometimes they are a combination of two words, as in my brain can't choose which word to say and puts two together that mean the same thing. Or sometimes I simply can't remember the word for something. Which results in me pausing, or getting frustrated trying to remember it for ten minutes.

At first it was a giggle, and people close to me would laugh. But now I'm beginning to find it embarrassing. I have begun a job as an assistant lecturer, something I am incredibly proud of. I felt daunted at first, thinking am I clever enough. I knew I was and most people have this fear at some point. I excelled at practical work, and managed to cope with most brain fog or physical difficulties. This was probably because it is in short bursts and being active helped me.

When it has come to marking, however, I am lost. It seems to have timed itself with a visit from you resulting in hours in front of the laptop trying to string sentences together. I can't retain information. My spelling, grammar and typing ability has evaded me. and I just simply cant think of the words to say. Ashamed and annoyed with myself I went over the deadline and needed a lot of hand holding to get it done. Everyone was understanding and told me not to beat myself up.

But it is frustrating when I can't remember the times of my workshops, which are the same every week. Or even what medication I am supposed to take when.

But I am annoyed. I can no longer express myself fully and it is like you have stolen my brain. Please can you return it so that I can resume my normal self and not feel silly in front of people who don't know the previous me?

One thing I have leanrt is that I need to break things down into smaller pieces, and vary my activities. Then I stop before you get your pesky claws into my grey matter. Everything else gets written down or is forever forgotten.

V

A wolf in sheep's clothing

Dear Wolf,

Sometimes I fear I've become half a person, or just an illness. I feel that having the disease from 'House' is the most defining part if me; the conversation point, or the whinge about feeling poorly.

I'd love to have an identity like the treasured friends I watch, effortlessly being the people they want to be. My beautiful friend working on her doctorate, but is a party girl, narcotics and all at the weekend. The sister who is a full time mum and still finds time to blog, photograph and have a pretty house. The socialites, the theatre makers, the artists, the writers, the academics...

I don't feel an ounce of jealousy, I admire them. I watch and get that feeling of happiness and pride that they are happy and living interesting and fulfilling lives. It inspires me to be, to dream and then I remember you. You rob me of the energy it takes to be.

So whilst I sit here at a birthday party, in the corner with my soda water, wondering how long it'll be till I go home and take painkillers, I know that tomorrow I'll be shattered. Getting dressed up and putting on my smile will mean a duvet day. Don't get me wrong I have had a fantastic night. I enjoy getting dressed up, talking to people and and laughing, I just know it will come at a price that's all. I look at everyone in the room and whilst I know I won't have the cigarette and alcohol hangover you will tomorrow, I will have an energy hangover even though I've taken it easy.


More than anything I worry that I always appear so sensible and boring. So I have one of those funny conversations about it, shouted, over the 90's music, to the drunken friend who looks bemused:

Him: Why are you always driving Vicki?

 Me: Cause it's easier to get home

Him: ahh, but have fun

Me: oh I am fine, watching you all his hilarious

Him: come and dance?

Me: I can't my leg is too painful (I forgot painkillers and have abandoned my 80's stilettos. I have taken to slinking round the walls, to hide the limp caused by my painful hip/knee/foot, when I go to the toilet non stop, after drinking 5 pints of soda water)

Him: what have you done?

Me: Nothing I have Lupus and it makes things sore sometimes

Him: Did you leave him in the car?

Me: What!!!???

Him: is he in the car?

Me: No I have Lupus (wish I hadn't mentioned it)

Him: Oh whats your dog called again?

Me: oh you mean Bruce?

Him: Yes your dog

Me: No his name is Bruce, he's at home tonight with Sal (I wish the Lupus was too, though not with Sal).

My soul feels happier for the two social occasions I have made it to this week. Surrounded by people that make me laugh and smile. 

I just cant help but think about what they think of me. Wolfy you have made me half a person and I want to know, if given the chance, who could I have been?

Lost this battle

Dear Wolf,

Today we have not been getting along. The fight has been brewing for a few days, now it has happened and I have lost this battle.

So now I bare your scars. My throat is tight and mouth ripped to shreds. Eating is like learning to swallow swords and not being very good at it.

My body is bruised and aches all over, a sickening pain like flu. Then the searing pains from your attack in my left hip, right hand, left toes, chest and left shoulder. like red hot claws that make you gasp.

You've infected my being, turned my blood to stone and made me heavy. I can't focus, want to sleep and my brain has turned to lead. I think slowly, forget much and muddle my speech. I forget to take the tablets that keep you at bay.

Dramatic it may sound, especially when others can't see you hiding in my shadow. Not visible to the human eye. I feel guilty for winging, relying on others and being a boring soul who can't leave the safety of the duvet. Please don't bring your pal the black dog to visit.

So another day lost in the battle? Today I managed to drive to a blood test, came back too exhausted to even make food. I watched Paul venture into the outside our real life canine companion. I wrote a letter to the council to try and rectify the aweful financial mess this has caused. Then sleep, a bath and washing up. Gosh I feel so lazy and my mind battles the thoughts of being lazy, weak and to pull my socks up and try harder. Is this in my head? An excuse to be lazy.? Are you real?

The reality is though I didn't see you for couple of days and I did too much, a spot of organising and a bit of gardening. My mind and spirit felt great. It was obviously too much. But how much is too much?

Rheumatologist on Thursday to say the drugs are not working... You have won this battle, but you will not win the war.

(Maybe we should make friends and stop fighting?)