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.

Some days are for warmth…

So today I woke up feeling pretty horrid. New meds are making me sleep for nearly 10 hours a night, and then groggy the next day. I guess this beats the 4 hours average I’ve had for the past few months.

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I’ve begun a new kinder morning routine. It mainly is about not rushing:

Wake Up | Check my journal (not phone) | Feed and let the dogs out | Enjoy coffee / breakfast | Put myself first with yoga or mindfulness | Get ready | Walk the dogs | Check the post | Plan meals and actions for the day

In today’s journal I had scheduled a Weight Watchers meeting, crafts with a friend, followed by a show at the theatre. After sleeping past the Weight Watchers meeting time, and walking the dogs, falling over in the mud, and nearly passing out I knew I wasn’t up to much. In the panic of pain and fatigue I cancelled everything.

Then I realised I did really want to see people and that I needed company and inspiration. I don’t know about you but I am constantly in battle with myself for shared time and alone time? So today I back tracked and rewrote the day. I’m sticking to 3 things at the moment so my new plan was:

  • Drive to the Cowshed to pick up craft materials
  • Meet with Helen, to eat her home made soup and chat and maybe craft
  • Make chickpea blondies

So I did all these things instead of a disaster it was wonderful. Driving through the autumn landscape in no hurry meant seeing the countryside in all it’s glory. Then getting home it’s all warm and cosy and the dogs were waiting.

Helen arrived with a box full of crafts, and her delicious homemade squash soup (I’ll endeavour to get the recipe). We chatted about life, and ideas, and drank coffee. We both, being spoonies, decide to keep the craft simple and make our own ‘advent calendars’. It was Helen’s idea as a way to be kind to ourselves. I provided the labels to write them on and we both came up with ideas for an action a day that would be treating or nourishing ourselves.

Thats all there is to it really. We wrote on luggage labels and decorated them with stickers. I ended up doing 31 to take me all the way to New Year, and have a whole month of adventures. The idea is to pick one each day to do. If it is completely impossible with your schedule we decided we would be allowed to swap one but you should then make time to fit in the discarded one so all the tasks are at least attempted throughout the month. I’ve decided to do mine with the food bank advent idea. In this I put an item of food into a box each day to donate to the local food bank.

Finally I made ‘chickpea blondies’ as a quick sweet treat, they sound odd but they are amazing. I found the recipe here. They are great for lazy days and you literally shove everything in the blender and bake. Oh and then eat of course, still warm from the pan with oozing bitter chocolate.

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What do you do to stay warm once the weather turns colder and the nights are shorter?

 

 

24 hours

Slept | make up | made daal | almost danced awkwardly at a gig | slept | coffee | brushed hair | driven to Canterbury | held my head high even though afraid | volunteered | forgot to phone people | had coffee with my fave | had tea and cake with an old friend | cried | laughed | been restrained in lush | eaten fish and chips | read | bathed in lush bath bomb bliss | done 40 minutes of yoga | collapsed on sofa to read some more