Mother’s Day Fallout

Dear Wolf

Its been a while since we had a chat about things. Mental health has taken prevalence over physical but I think both belong to you. You are the wolf that bites and the black dog that lurks. Mental health and physical health are linked.

Partly this is because mental health is physical. Maybe its nervous system damage or a chemical imbalance. Currently my diagnosis dances between ‘born with it’ and ‘bad experiences’. The old nature or nurture argument. It drives me mad that mental health is treated separately, but more on this another time.

What I really want to have is a little chat about that phrase ‘Its not surprising you’re feeling down with all that s going on’. Nope it really isn’t. Being limited and constrained feels unfair and chronic pain is simply torture.

Last Sunday was Mother’s Day, some say another hallmark day, I like just letting my mum know I’m grateful for her being my mum. But when you celebrate a group of people there’s always a whole group of people excluded. In this case women who are not mothers. My sister captured the feeling in her Instagram stories on the day…

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That shouldn’t be a problem, I hear you grumble, and generally it isn’t. It’s just sometimes it makes us feel sad to be left out. Sad to not have a choice in the first place. I don’t want to go into extensive detail. But diseases like Lupus are common in causing miscarriages, make for a high risk pregnancy and the meds we take are too strong. We are told fiercely by our doctors not to get pregnant. You can read a little more about it here.

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That’s the physical side and mentally it affects you too. I have an innate fear that I couldn’t care for a baby or child when I’m so exhausted all the time. I can’t even look after myself, let alone someone else. Also there’s a part of me which says ‘what if I pass it on’.

IMG_5143For me the most significant part of not being in the club are the questions from others. So I guess this post is a little get out clause for me. HAVING CHILDREN IS NOT A SIMPLE OPTION. And before you suggest giving up meds/ just doing it anyway/ not being so pessimistic/ tick tock time is running out/  when you’re better/ please believe me that these are things we’ve tried ver and over or run through in our heads.

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It just isn’t that simple and on top of the usual worries people have about money/ career/ relationships we just don’t have the choice. That is it really, as with all chronic illness it is being robbed of choice or options.

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So I’ll send my card and appreciate mums everywhere. I’ll ignore the targeted adverts about fertility or baby clothes. Pick my self up and keep on being me (with a little ache inside).

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Small Hands

Miss you terribly already,
Miss the space between your eyelids,
Where I’d stare through awkward sentences
And avoid through awkward silence
Miss your teeth when they chatter,
When we smoked out in my garden
When we couldn’t sleep for all the heat,
Soft talk began to harden.
Miss your small hands in the palm of mine
The fact they’re good at making,
Miss your sitting up incessantly,
And the fact you’re always waking in the night, night.
And I,
I hope for your life
You forget about mine
Forget about mine
Miss your teeth dug in my shoulder,
As we rolled in early morning,
Miss your arm dying beneath me,
As I lay there simply yawning
Please forget me, you were right dear,
I am cold and self-involved,
And though I’ll miss you, recent lover
I am weak and therefore fold
Get distracted by my music,
Think of nothing else but art
I’ll write my loneliness in poems,
If I can just think how to start
Dot my I’s with eyebrow pencils,
Close my eyelids, hide my eyes,
I’ll be idle in my ideals,
Think of nothing else but I.
I, and I
And I,
I hope for your life
You can forget about mine
Just forget about mine
Oh, mine.
Keaton Henson

I will tell you about selfish people…

Rupi Kaur

“I will tell you about selfish people. Even when they know they will hurt you they walk into your life to taste you because you are the type of being they don’t want to miss out on. You are too much shine to not be felt. So when they have gotten a good look at everything you have to offer. When they have taken your skin your hair and your secrets with them. When they realize how real this is. How much of a storm you are and it hits them.

That is when the cowardice sets in. That is when the person you thought they were is replaced by the sad reality of what they are. That is when they lose every fighting bone in their body and leave after saying you will find better than me.

You will stand there naked with half of them still hidden somewhere inside you and sob. Asking them why they did it. Why they forced you to love them when they had no intention of loving you back and they’ll say something along the lines of I just had to try. I had to give it a chance. It was you after all.

But that isn’t romantic. It isn’t sweet. The idea that they were so engulfed by your existence they had to risk breaking it for the sake of knowing they weren’t the one missing out. Your existence meant that little next to their curiosity of you.”

Rupi Kaur, Milk and Honey

Gosh this speaks so loud to my soul

Reality

For all those that may think my 6 months off is a lark heres a link to a little video. Do you know what it is and it isn’t fun, just like working is and isn’t. This is what most days look like unless I’m off finding a small break in the misery like flying a kite or walking my pup.

Plus I’m broke, on the verge of homelessness and generally a bit of a whinge.

I also carry massive amounts of guilt for not working.

https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FChronicIllnessOnThemighty%2Fvideos%2F1374582545896823%2F&show_text=0&width=560

Starálfur

A Glastonbury a long time ago, the Other Stage, a sunset. Nostalgia.

Blá nótt yfir himininn
Blá nótt yfir mér
Horf-inn út um gluggann
Minn með hendur
Faldar undir kinn
Hugsum daginn minn
Í dag og í gær

Blá náttfötin klæða mig í
Beint upp í rúm
Breiði mjúku sængina
Loka augunum
Ég fel hausinn minn undir sæng

Starir á mig lítill álfur
Breytir mér í, en hreyfist ekki
Úr stað – sjálfur
Starálfur

Opna augun
Stírurnar úr
Teygi mig og tel (Hvort ég sé ekki)
Kominn aftur og allt allt í lagi
Samt vantar eitthvað
Eins og alla veggina

(Starir á mig lítill álfur)
(Breytir mér í)

Úr stað – sjálfur
Ég er…

In English

Staring Elf

Blue night across the sky
Blue night over me
Disappeared out my window
With hands
Folded under cheek
Thinking about my day
Today and yesterday

I dress in the blue pajamas
Straight into bed
Spread the soft covers
Close my eyes
I hide my head under covers

A little elf stares at me
Runs towards me, but doesn’t move
From its place – itself
Staring elf

I open my eyes
Wipe the crusts out
Stretch and check (whether I haven’t)
Come back and everything is alright
Still something is missing
Like all the walls

(A little elf stares at me)
(Runs towards me)

From its place – itself
I am…

Reflecting Light

May we all reflect the moon’s light. She offers something mysterious, fleeting yet secure.

Now that I’ve worn out
I’ve worn out the world
I’m on my knees in fascination
Looking through the night
And the moon’s never seen me before
But I’m reflecting light

I rode the pain down
Got off and looked up
Looked into your eyes
The lost open windows
All around
My dark heart lit up the skies

Now that I’ve worn out
I’ve worn out the world
I’m on my knees in fascination
Looking through the night
And the moon’s never seen me before
But I’m reflecting light

Give up the ground
Under your feet
Hold on to nothing for good
Turn and
Chasing you
Stand-alone and misunderstood

Now that I’ve worn out
I’ve worn out the world
I’m on my knees in fascination
Looking through the night
And the moon’s never seen me before
But I’m reflecting light

Sam Phillips

Who am I?

So…

I don’t know where to start this one. But yesterday I was asked who I am. I was floored.

I am Vic.

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But who do I present myself as? For years I’ve been me but maybe not me? Its such a confusing question. Can knowing who I am be the answer? I can’t answer it, partly because its a fluid thing and partly because I just don’t know.

I am Vic. I’m creative, passionate and imaginative.

 

For years I’ve played at being an artist and I did ok at it. I’m creatively inspired by stories true and fictional. I’m passionate about the power of the Arts and working with others. My imagination has taken me on some crazy adventures and projects, all of which I’m proud.

Over the past few years my ability to work effectively has been swallowed up by my physical and mental health. At first I said yes to everything in my excitement to be working in the Arts. I was good at what I did so work came to me and despite the struggle in terms of funding and consistency I was happy. The work grew and my company Wide Eyed Theatre was born. I worked in multiple roles for the company, as a youth worker, sessional lecturing and freelance. All aspects I have loved, and despite being poorly paid, I know along the way I have made a real difference in young people’s lives.

Maintaining this was a struggle and at some point amongst all the anxiety fear, pain and fatigue I stumbled. Something went wrong inside and no matter what I did I just couldn’t keep up or manage everything. Work was so important that the first thing to go was my social life and me time.

I began to reduce my life and cut out the extras that tipped me over the edge. I was stuck in a cycle of working or sick. I gradually got more and more fatigued, I’ve often described it as every day feeling fluey. I’d work then collapse and repeat. I had to take long breaks and nap or I just felt like I’d vomit. Everyday off and every nap carries guilt and I felt lazy and like I’d failed. So I’d go back into it full pelt, desperately not wanting to let people down. It wasn’t working. I began to feel drained creatively too. Partly from not feeding myself imaginatively by slowing down and allowing moments of peace and beauty. And partly because I was giving so much to everyone else and not myself as I was so scared.

So I fought for a diagnosis to understand why I felt the way I do. Why everyday is a struggle and why I let people down. I got used to wearing the label of chronic illness and found it easy to hide behind. In a bad place physically and mentally I also got into a bad place in a relationship and financially.

In 2013 I was diagnosed with Lupus. Since then its bounced around and things have been added and subtracted. I wrote more about the labels here. My current diagnosis stands at

  • ‘Lupus’ like auto immune disease1397203fa8512bc777ae182f1060e702
  • Suspected Behcets Syndrome
  • Joint Hyper-mobility Syndrome
  • Fibromyalgia
  • Chronic Migraine
  • Bipolar
  • Borderline Features
  • Depression and Anxiety

I fought to be recognised as ill and not fobbed off and I feel like a diagnosis means I’m taken seriously and its not in my head. The trouble is that I’ve fought so hard that its consumed me. Lupus and medical took over even back here I was discontent with the Vicki that said ‘Hi I’m Vic I have Lupus’ before anything else.

So when I was asked who I am it jarred and crushed the part of me that has become swallowed by the wolf that is chronic illness. Its my defence mechanism but has made my life so unbearable that I am the wolf.

In 2016 it all imploded and I’ve been left stripped of everything. My mental and physical health is fragile. I’m currently at risk of being made homeless and bankrupt. I’m stepping back from work due to feeling so breakable. I have nothing, yet there is glory in being stripped bare.

Then in this conversation a different suggestion was made. One that may yet have viability. I am still Vic, I have a chronic illness and this is how I manage it. This is how I choose to live with and tame the wolf.

I am Vic. I’m creative, passionate and imaginative. I am fierce and tame wolves.

Trouble of the World

This evening I finished watching the stunning, brutal and heartbreaking Alex Haley’s Roots on BBC4. I read this book when I was 18 and remember it as a life changing story. Life changing for me because it demonstrated just how important knowing our story is. Lots to think about and I loved the inclusion of this song…

Soon I will be done
With the troubles of the world
Troubles of the world
Troubles of the world
Soon I will be done
Troubles of the world
I’m going home to live with God

No more weepin’ and wailin’
No more weepin’ and wailin’
No more weepin’ and wailin’
I’m going home to live with my Lord

Soon I will be done
With the troubles of the world
Troubles of the world
Troubles of the world
Soon I will be done
Troubles of the world
I’m going home to live with my Lord

I want to see my mother
I want to see my mother
I want to see my mother
I’m going home to live with God

Soon I will be done
With the troubles of the world
Troubles of the world
Troubles of the world
Soon I will be done
Troubles of the world
I’m going home to live with God

MAHALIA JACKSON