Welcome and a new direction

Hello to anyone new to this space and to those who have followed for a while. If you follow me over on Instagram (where to be honest I feel most active because of the community) you will see that I’ve created a new account @theresawolfatmydoor that is separate from my personal account @spoon.moon.wolf.

There’s A Wolf At My Door is an image that has sat well with me from the beginning of writing this blog. I describe living with chronic illness like living with a wolf constantly at your door. She is the uninvited villain (from fairytales) who creates disruption and havoc. She often stops you leaving the house and if you fight her you are left wounded and scarred. She takes on many forms: physical, mental, social and political. She doesn’t just affect one person but often the whole household she visits. She creates #SpoonieProblems such as loss of mobility, low energy, loss of income and insolvency, weight gain, prejudice and homelessness. Many metaphors have been used to describe these from very similar analogies such as Churchill’s ‘black dog‘ in mental health, to counting spoons (Spoon Theory) when managing fatigue.

The Wolf

I found the wolf because I was initially misdiagnosed with Lupus and as the name Lupus is derived from the wolf. For over ten years I worked as a storyteller and felt connected to the wolf as the villain in stories (there’s a great article on wolf stories here). The wolf is that sinister nighttime creature of terror. It howls at the moon, hunts in packs and on occasion is known to eat humans and pigs! Most of us have heard of the Big Bad Wolf. I feel that living with chronic illness is just like being a Little Pig or Red Riding Hood, it’s living with a threat constantly there.

When I began this blog I started by writing to the wolf and documenting how she was affecting me. I felt like the more I tried to shut the door on her, the more she knocked, and the more she fought to get in. Every time I’d fight her I’d be left with battle scars such as crumbling knees and swollen joints. Ignoring her presence and getting on with my life inside my house meant she just got bigger and smarter. She was the unwelcome visiter who didn’t just affect me but also those around me. The wolf is all encompassing; she prevented me leaving the house and working or having a social life, she gets inside my head and muddles my thinking and increases anxiety, she puts pressure on those I live with and she steals my money and time. She is always lurking and I never know when she will knock. So after a while I began to acknowledge the wolf and let her in. To accept that when she visits I need to stop and slow down and try to feel less guilt. To even appreciate that the wolf isn’t all bad but maybe can bring some good.

So over on my personal account @spoon.moon.wolf I shall stay with stories about me and about my daily life, slow living and creative adventures. The new account @TheresAWolfAtMyDoor is growing into something more. It is becoming a community for those who live with wolves, those who have become #thewolfpack. It will be a place in which we can share what our lives are like when they are shared with a wolf.

So here is my vision:

The Gift of Slow

The wolf is a creature of nature, she rolls with the seasons and appreciates a simple life. Living with her means that I move with her rhythms (listening to my body and how it is responding to the wolf). It’s a life stripped back to its basics: good food, low impact, creativity, frugal and secure living. Nothing can be hurried and we can’t multitask. We listen to our bodies and rhythms and find our own pace. For me this is doing tasks but allowing them to take a longer than usual time. Like creative projects that span a year, and that is ok. Or gardening a little at a time in a manageable way. Or creating thoughtful meals from scratch that nourish and heal. I found that by the wolf stealing my energy she gave me the gift of ‘enforced slow living’. I want my accounts to share my learning and slow living ideas with you and to include the wisdom of other who feel the same way.

So right now if you are local you can join in with ‘The Spoonie Sessions’ which is a monthly meet up group in Canterbury, Kent. The meet up will focus on small creative projects and discussion. There’s info on this here. I’m looking into developing retreat days too.

Coming soon are weekly blog posts about ‘Wolfpack’ issues, and creative and slow living adapted mini activities and projects. These will capture the essence of what I have described above.

In the pipeline (to happen later this year) there will be a more in-depth newsletter that I am working to produce with collaborators. These monthly curated collections will put slow living, sustainable, creative activities in one place and drop them straight into your email box. So watch this space! If you can’t wait and want a 50% discount then you can sign up to be the first to receive a copy when it launches in the Summer.

The Wolf Inside

For me finding out I have an incurable chronic illness was devastating. To be honest even though I’m told to stop I still cannot fully accept that this is the way it is. This, along with losing my housing, company and relationship etc. meant that I fell apart. Despite coming close I’ve never given up and through tenacity, and resilience, and the support of others found a way to live with the wolf. As much as I don’t like being told I am always strong I know that most of the time I am. Going through these trials makes you realise that the wolf isn’t always on the outside of us but we have a fierce, brave and occasionally grumpy beast inside. I don’t think I am different to anyone else, I’ve just been asked to prove it.

To honour those who live with wolves I am launching my podcast in the Spring. This podcast will be fortnightly interviews with other ‘spoonies’ to talk through their stories of triumph and adversity when  with living with a wolf. The making of this can also be supported on my Patreon.


The Wolf Pack

The last and most precious gift is finding that I am part of a wolf pack. Becoming part of the community of spoonies on Instagram has been the most rewarding and supportive thing that has got me through some difficult times. Being one of many allows you to share commonalities, to fight discrimination and ableism and to get advice.

My vision is that Theres A Wolf At My Door in all of it’s formats is a safe and non judgemental space in which people can explore their experiences of living with a wolf. It is not a place of comparison but a place of support and advocacy. It’s a place in which we can creatively explore what being in a wolf pack means.

So I hope you’ll join me on this new adventure. Please let me know if you would like to collaborate or contribute.

In the meantime all of this is being done for free. If you would like to contribute to the running costs (domain and blog costs, podcasting equipment and hosting, camera and editing software, or a cup of coffee for me then please donate via my Patreon)

Spoonie Solutions

Hands up who has #spoonie problems? Me too, I probably whine about them a lot. You’ll know this if you follow my ig stories! So what’s this #spooniesolutions all about? Well it’s turning the hashtag #spoonieproblems on it’s head. Before you cry in protest its not because the problems are not valid, quite the opposite in fact. They matter so much, and need to be highlighted. #spooniesolutions is all about identifying the problems and shouting about them. Then I want to attempt to discover some answers.

This all came about after a combination of discussions, and a personal review of my blog and Instagram. I had a big appointment recently in which I found that, as expected, I have an area of hyperperfusion in my brain. In the appointment I took it in my stride, but as the results sank in I felt very upset. Part of me wanted to jump for joy that I have a positive (as in something showing up not a feel good) result, and part of me was scared and in shock. It explains a lot including migraine, and serious mental health issues, confusion and fatigue. But it broke my heart to think that it is active in the blood vessels in my brain. For my own sanity I had to recognise my upset (spoonie problem) but find a way to deal with it (spoonie solution). For the first week I cried and it still makes me cry now. But I am getting there.

I’m in a position now in which I can reflect on how I’ve survived through the past few years. Yes that’s dramatic but it has been survival. I can hand on heart say that it’s been through living life slowly and taking time to nurture myself by being creative and living a more simple life. I want the solutions to #spoonieproblems to reflect this but also offer a range of approaches that I hope will be useful to me and anyone else that is out there and reading. They’ll include practical advice, campaigning for change, and most importantly opening up the issue for discussion.

As a veteran spoonie I feel qualified to address the issues from an insider’s perspective. But to ensure that the solutions given are thorough and actually useful I will be consulting with other spoonies via the comments here, Instagram and in real life. I will also include resources from medical practitioners, other websites (such as The Mighty), apps (such as HealthUnlocked) and relevant organisations.

I have a few solution guides planned including travel and holidays (vacations), everyday travel, work and benefits, and hobbies. All of these will include parts of my personal story and anecdotes. But I will approach how to deal with them by being creative and living slow.

Please don’t be shy, I’d love to help your share your story and looked at spoonie problems together. Let me know in the comments, via social media or email.

Look forward to hearing from you…

People are rubbish. A guide to reducing personal waste.

We really are, we create nothing but waste. First of all pop over to People are Rubbish on Instagram to see just how bad we are! Rubbish tells a story, one in which we are the villains…

Last year I began ‘slow living’ with the goal of simplifying life, buying less and better quality. As an extension of this I began a personal war on waste. Then just before the new year the BBC’s series Blue Planet was released and the fish swimming in our plastic waste broke our hearts. If you missed it you should watch it here.

It is very clear we have to make a change to the way in which we live and consume. When even a Tory PM declares a need for drastic change on an environmental issue there must be a crisis. “May’s speech, unveiling a much-heralded 25-year plan for the environment in England drawn up by Michael Gove’s environment department with input from pressure groups, focused heavily on plastic waste, which she called “one of the great environmental scourges of our time”. https://www.theguardian.com/environment/2018/jan/10/theresa-may-proposes-plastic-free-supermarket-aisles-in-green-strategy

I don’t want to waste time here giving any more reasons to change. But if you need one watch this turtle mama.

Ok, ok statistics and preaching over. What we need to do is take personal responsibility and make changes now. I am going to share with you a few easy starters that I’ve found have worked to help you get started.

Clothing

Step one is to fall in love with what you already have in your closet. Make a capsule wardrobe thatl works and go with it.

As you may have seen in a previous blog post I’ve been using the Cladwell app. You basically create your wardrobe from a combination of their items and uploading your own. From this is gives you a choice of daily outfits. Sign up to cladwell here. Use the code wolfatmydoor.

If you do need to buy something it has a great section to recommend what to buy to fit in with the clothes you already have. Over the last year I have strived to buy less and invested in pieces from quality and ethical brands such as People Tree. Their prices cost slightly more but it’s worth it. Their fair trade organic clothing is ethical and beautifully made and oh yeah it lasts.

After a month or two you have a good Marie Kondo style clear out. You are left with items you actually wear. Here are three easy things you can do with the clothes you decide to part with instead of filling landfill:

  • Sell good items on your local Facebook sites. Just click the marketplace button on the app and snap your clothes for some extra cash
  • Dye existing clothes to refresh them or create something new Dylon does an excellent washing machine dye in a pot with everything included
  • Use the fabrics to create something new. I’ve cut up t-shirts to make macrame plant hangers or draft excluders. Check out my Pinterest board for ideas

Personal care

Ok so my favourite find this year is Who Gives a Crap toilet paper.

I love everything about them. They are wrapped in beautiful PAPER wrapping so zero plastic. They’re made of good stuff and they raise millions for Water Aid. Oh and you can subscribe to a delivery so you never run out. It comes in a big cardboard box so you need to store it. Buying like this saves money too and it’s cheaper then buying at the supermarket. Want more money off? Here’s a fiver to spend with them.

I also invested in a Tulip cup to stop using tampons and pads. Let me know if you are going to order as I have an offer for a free gift.

There’s loads of small things you can do like swapping from detergent to washing eggs. Get yourself some old fashioned washable handkerchiefs instead of using packet tissues. And lastly I’ve changed to bamboo toothbrushes to save on plastic. You can purchase them on amazon.

Food and Drink

Coffee cups have been hot in the press this week with a tax on disposable cups being introduced. You can pop into most bargain stores and grab a reusable cup to take out your coffee from kitchen to car. Even better invest in a slightly more fancy KeepCup cup. You can get a super fancy cup from them. You can even design your own and buy one of their reusable straws. If you sign up to an account you can get 15% off your first order with them by using the code uksubscribe15

Another tip for the kitchen is to start using glass and Silicone products. Jars are fab for storing stuff and free if you re use jars you get with other products. Silicone is great for all sorts of products such as baking tray liners to replace tinfoil.

Finally the war on supermarkets. First of all there’s some great ideas like having plastic free aisles. You can put pressure on supermarkets and the government by signing this petition.

Supermarkets are not doing enough. I got my Tesco delivery this week and asked for no bags. I ordered all loose fruit and veg to avoid all the plastic. I also love their paper veg bags as they fit the compost bin perfectly. I was so frustrated to find the entire order full of those tiny plastic bags you get on the produce aisles! They’re so tiny and thin they’re not even reusable. Come on Tesco use your brain, no bags means NO BAGS. I just found out that my local farmers market is very local so I’m turning off my delivery subscription and changing my shop, sorry Tesco.

So that’s where I’m up to with my own war. Next on the list are:

  1. Shopping bags and making my own cloth bags for veg items.🥕🍅🥑
  2. Beauty products – recommendations please 💄💋
  3. Medications – this really bothers me as it creates a ton of waste each month. I don’t have a solution do you?💊💊💊
  4. Nespresso pods – I am a Nespresso junkie. They get me through the day but the waste is bothersome. Nespresso recycle their own pods but I don’t often get them as they are so expensive. Anyone got any ideas on other brand pods?☕️☕️

I hope you enjoyed reading my guide. Please remember to say hello and share your war on waste ideas below.

To find out more on reducing waste visit http://www.goingzerowaste.com

All opinions are my own. None of these are paid recommendations but genuine reviews with money off, where I could find it, to help you out.

Narrow Margins

I can’t ever get this song out of my head. The words, oh the words, they say my all thoughts. The melody gets me in the pit everytime.

“Narrow Margins”
I can’t live this way

Breaking all my rules again

Choking on my gin

You push ’til I give in

‘Til the loser always wins
Somehow with his beckoning

Bruising with his threads

Confusing what he says

But I won’t live that way

Though I kind of want to anyway

Kind of want to play

With all the pretty and the pure

Well I return to the earth

I return to the dust

No more beauty by the pound

And this I do not trust
‘Cause nothing forgives

Rules and narrow margins

In our lives

It’s rules and narrow margins

But I will slip by
I can’t find the time

I don’t know the future

I couldn’t bring that past back

I waste what little time I have
But I swear I almost touched it

Yet it slipped between my fingers

Sent shivers down my spine

Cut a splinter in my mind
But it wasn’t nothing, again

These rules and narrow margins

But our life

Is rules and narrow margins

But I will slip by
Rules and narrow margins

Rules and narrow margins

But I will slip by
Half Moon Run

Learning about Chronic Illness and Autoimmune Disease

About a week ago a book caught my eye: The Autoimmune Wellness Handbook by Mickey Trescott and Angie Alt

For those of you that have been following my journey recently you will know that due to multiple chronic illnesses I have taken a year or so out to live slow and heal. During this time there have been lots of battles in my brain to do with acceptance and grieving for a life lost (My post about diagnosis can be read here). So when I stumbled across the Autoimmune Wellness podcast I was already in. I love a good podcast as they save me when I have painsomnia or on the days I’m too ill to read and sick of screens. In podcast one Mickey and Angie spoke about their own journey and reason behind the book  so I ordered myself a used copy on Amazon. Let my investigation into my body and its quirks begin. I have a very lov/ hate dialogue with my body and chronic illness and for once I feel I may have the space to address this.


To be honest I am a little sceptical. The amount of ‘cures’ thrown at people with Autoimmune and invisible illnesses are huge. Everyone has a method or a miracle cure or the handy advice of ‘exercise more’ or ‘eat better’. What appealed to me here is the fact it’s a DIY guide and not a manual. Not ‘here’s what works’ but a try this journey and see what works for you. Anything I can adapt works for me and they have podcasts and Instagra. Sign me up, I’m a social media sucker!


So the book arrived and it has a pretty cover so I like that ✔️

Then a friendly story about the authors, another  ✔️ for me. 

It explains how it works in simple terms ✔️. 

Then my fave bit, a checklist quiz all about where you are on the spectrum of Autoimmune, I loved this ✔️✔️✔️.


Then I made the big bad mistake of skipping through the book to the section on food. I knew I’d panic when I saw the elimination diet but OMG it’s epic. It literally excludes everything I like. Bad me, I shouldnt have done this but I did. The pleasure of food and eating is one of the things I feel I have left, and the thought of a strict regime makes me panic a little inside. Even if it made my illness manageble I’m so stubborn and I love caffiene, cake and cheese!

 

Even though I don’t think I’ll manage this saintly diet I’m going to stick with the book for now. Those who know me well will know I’m a typical Gemini who follows the next shiny thing so this may be a short lived project. But my intent is to work slowly through the process and get to the diet when I’m ready and less resistent. It’s worth a shot no?

I’ve recently realised that I dont have to be the best at everything, I don’t have to do everything perfectly. I can start things and even if I dont do them to the letter I can extract some good from them. For example I did a smartphone detox a while back and I’m far from saintly, still addicted, but I no longer have notifications on, deleted the Facebook app and am able to  put it down. 3 good things came of that so thats success not failure right?
I’m going to attempt to blog my journey with this tis book so welcome to the adventrue be it long or short…

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.

Disentangle

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You say we were two lives that need to disentangle.

But really some of each other became the other one.

That’s the problem. Where do you stop and I begin?

It’s less un-knotting and more a case of cutting it out.

It’s not like cutting out fat, sugar and carbs for my diet to make myself more attractive.

If I do this then I crave the bad.

Maybe I let a remanent of us remain?

It’s a dangerous game, I binge then purge.

More than that its like something that’s diseased.

You cut the tumour out stop it spreading.

I find rancid places to cut you out.

A surgeon, a butcher, a self-harmer.

I peel the taste buds from my tongue

because they shared a love of flavours,

that only we could understand and create.

A menu bittersweet.

I gauge the black place in my heart.

Like cutting the mould from cheese to preserve the rest.

Yet you always worry there’s some you didn’t remove,

and you’ll end up all bile inside.

I remove objects and reminders from my home.

Like cutting the pieces of a stencil,

to make it make a new pattern.

I like the way it looks better than before.

I cut poisonous people out of my life,

it’s an attempt to make it happier, but really I’m afraid.

Scared of their judgement,

because that’s what I became.

Some cut the story from the paper

in order to remember and celebrate.

But the card from last year which says ‘I’m still glad I’m in love with you’

is better forgotten as a manipulative lie.

I cut the nails from my toes,

to stop gouging out the flash at the sides.

Occasionally I don’t do it straight enough,

those feet that danced together become hot and infected.

I dig at my flesh, open wounds and peel back scabs.

I cut you out of me but I keep forgetting where me ends and you begin.

I bleed a little to prove I’m still alive,

and it’s still possible to hurt.

Maybe I’ll let a small piece stay,

like an inked scar to mark the moment we were one.

Is this violent act self harm self-preservation? Cruel to be kind?

I cut away part of myself to make room for more.

The Art of Slow

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Well I’ve chatted a lot about the negativity of chronic illness, I’ve also searched hard for the positive.

Recently I’ve managed to find myself in crisis, one of those moments when it never rains but pours. I made a list of ‘losts’:

  • My health
  • My work
  • My heart
  • My home

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Pretty huge things and I don’t have much left. But to reexamine the list, stop and breathe has truly been insightful. Despite my stubbornness I’ve been forced to halt and reassess.

  • My health  I do less things and a slower pace. These are things that I enjoy.
  • My work I transfer my skills to find something that fits with the above. Work is about love not money.
  • My heart It’s about time I stop letting others destroy me and love myself. In turn I make room for good people.
  • My home I simplify my home and living to make it work for me and love everything within it

So I welcoming ‘The Art Of Slow’ whatever this means! I’m discovering it day by day as a personal journey. Adapting to the seasons and the needs of each day as it comes. Savouring moments and building them into something special.

To start off I’m going to do a few of these 25 suggestions to savour November

Thank you chronic illness, you gave me the gift of slow…

 

Hawthorn (Maytree)

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She awoke.

It was so dark she didn’t know if she was really there.

She inhaled.

Her face full of the metallic earth, all mud, and rain, and rot.

She twitched.

Her fingers grasped the crisp mulch that seeped into her clothes.

She rose.

It was so dark her eyes could only make out shades of black and blue.

She felt.

Her hand reached up to her matted hair and pulled at a leaf.

She blinked.

The shadows became giants, then trees so tall they scraped the sky.

She noticed.

How much more she could see if she stopped and waited.

She discovered.

The moon shone between the holes in the canopy providing just enough.

She moved.

Clambering to her feet she stretched her damp limbs.

She listened.

Around her the world was slow but more noisy than she ever knew.

She considered.

The path ahead was her way out, why she had come here; to die.

She turned.

The path back from where she came still remained.

She paused.

As she did her eye caught sight of a tree; clusters of flowers as bright as the stars.

She was drawn.

It seemed to become the night sky, full of hope in the dark.

She neared.

And walked with open arms into the mass of branches discovering thorns sharp and true.

She cried.

Each snare snatched at her clothes and tore at her skin, but she pushed forward.

She persisted.

Feeling something ok was on the other side, knowing it was something different.

She emerged.

On the other side of the hawthorn there was a path she hadn’t seen before.

She bravely walked.

With leaves in her hair, the moon in her eyes, and blood on her skin.

She began.

A new life on a path she didn’t know but one that could never be the one she’d trod before.

Letting go…

It’s over, dead, gone. There is no going back only forward. I need to make room for all the love that’s out there and being thrown at me in abundance. So today I’m lettin go…


Letting go means more room for giving and recieving love. Today this is my affirmation. Tomorrow it’ll be something more. I’m excited about my new adventure.