lupus

Dear Wolf

~ Vicki Oliver ~ 2 Comments

It has been a while since we had a little chat. Mostly because I’ve been busy as you know because when I am you sneak in to take a bite or two whilst I’m sleeping.

So it’s been a tough time since not working full-time, trying to manage illness and guilt, both playing off against each other. I have begun to realise that you are a black wolf, the wild cousin of the black dog. You affect me both physically and mentally. We are caught in a perpetual cycle of being ill and tired, or being kind to ourselves then being consumed by guilt for not working or not socialising etc.


My biggest frustration at the moment is when you take up residence inside my head. My head which was once sharp, intelligent, and on the ball. It ran a company, studied and managed large projects. It retained countless random facts and remembered everything. Just lately it’s not even been able to remember simple tasks. 

Most of the time this is amusing, like turning up to appointments a whole day early, despite writing the date out a million times over. Then returning the next day joking how efficient I am. I’ve even tried to lock the front door with the remote for my car and not understood why it wouldn’t work. I laughed at the time I organised an entire road trip to Scotland to visit friends and family. Somehow, despite writing everything down meticulously, I managed to book every visit and every hotel a week behind our actual trip. It was organised chaos on a spectacular level. Luckily, everyone saw the funny side and we managed to find hotels in which to stay. Most things work out eventually so I just laugh it off and rearrange.
Other times though, it is plain humiliating. Like not turning up to a huge schools day on a project I worked on for weeks because my brain just wouldn’t function. I cried when I didn’t see the results and felt like I let everyone down. The amount of tickets booked that have to be cancelled and re-booked because I cant match dates up. Keys permanently left in my front door (yes come rob me) because I forget or get confused. I get to work and they talk about my shift tomorrow and I smile because I had completely not seen that shift on the rota but luckily someone always reminds me (so far). Even as I type this on the train from London to Edinburgh, I redden at the fact the train tickets had to be cancelled and re-booked because, despite checking three times over, I booked entirely the wrong dates and days. Then the ticket collector arrives and I squirm because I cannot find the ticket I was holding just 3 minutes before. It’s humiliating and I can laugh most of the time, but as someone who was so good at life before I feel so stupid now.
The humiliation that has taken me sliding down every rung of the ladder and smashed my face on every step. I still try to see the funny side and always will. 
So Wolf, this week has been one of continuous humiliation, of which I’ll continue my frustrations in my next letter.
At the moment dear Wolfy, I ask that please can you leave my favourite organ – my brain – alone. I’ve always quite liked it and I need it most days…

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Reality

~ Vicki Oliver ~ Leave a comment

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

Who am I?

~ Vicki Oliver ~ Leave a comment

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.