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)

Weather Changes and Autumn as a Spoonie

Welcome Autumn and my favourite time of the year. I adore September and October with their golden afternoons, the abundance of foods, and the cosier evenings. I don’t know about you but I don’t fair well in the heat, it exhausts me and the sun irritates my skin. Neither do I do well in the cold and damp, it makes my joints ache and my mood dip. Autumn, however, seems perfect. I love a crisp but sunny morning, or an afternoon wrapped up warm for a gentle walk.  But something else happens in Autumn that leaves us spoonies floored and I’m not sure quite what it is. I’ve thought through a few of my theories here to try and come up with a Spoonie’s Guide to Autumn.

Weather Changes

So every time a season changes we find ourselves having to adapt. I find at these changing points I’m forever saying ‘we’re just not used to this heat/ cold/ darker nights/ humidity/ damp’ (the list goes on). Yes us Brits like to talk/ moan incessantly about the weather, but I’m sure there’s more to it, especially for us hypersensitive beings. And it seems there is actually proof of this.

Auto Immune I remember my clinic lead, Professor Fortune, telling me that changes in season affect bodies on a cellular level and it seems there is some proof. The BBC has a couple of brilliant articles on this. The first looks at facts behind the myths such as:

  • Rain gives you rheumatism – the answer is maybe but theres no conclusive evidence, its more likely power of the mind.
  • Falling air pressure is a pain in the head – I’m migraine queen aka the human barometer so I swear this is true and one study from Japan seems to suggest its true

The second article is much more focused on an in depth study on how temperature change affects our genes and immunology. In brief an international team of researchers conducted a study, funded by the Wellcome Trust and the Juvenile Diabetes Research Foundation to look at how this happens. They “found genes involved with immunity – the body’s defence against infection – were more active in cold months. And while this helps fight off viruses such as flu, it may trigger or worsen conditions, such as arthritis, where the body attacks itself, they say.” 

The study examined how this happens on a genetic level and found that when looking at genes “a quarter showed clear signs of seasonal variation”. The genes that were of most interest included ones associated with immunity and inflammation. Interestingly it wasn’t the degree of cold that was initiating the changes but the temperature changes themselves as ‘During cold, winter months – December to February for people living north of the equator and June to August for those in the southern hemisphere – these genes were more active. When they studied people living close to the equator, where the temperatures are fairly high all year round, they noticed a different pattern. Immunity and inflammation was linked to the rainy season, when diseases such as malaria are more rife.” A change is temperature is all that is needed to trigger flare ups as it directly affect the cells and ‘that increase in inflammation could now be a risk factor for diseases of modern life’ Prof John Todd, Study author. Big stuff hey?

Viruses and other factors are also linked to an increase in symptoms and flare ups for Spoonies. Many reasons have been given to why this season is prime cold and flu season. Maybe it is because we stay indoors more, have more close contact with each other or beginning of university and schools terms mean more people mixing. One thing is for certain and thats for those, like me, who take immuno-suppressants the exposure to viruses, infection and bacteria is a headache all in itself. Immuno-suppresants mean that, surprise surprise, our immune systems are suppressed and do not work as well in fighting things off. So don’t be offended if you have a cold and I  instantly grab for the hand gel. Getting a cold or virus also can trigger a flare up, even if we don’t fully develop the original cold. I get far less colds than other people but my body knows if I’ve come into contact with one. Unfortunately my immune system just cannot tell the difference between the things its supposed to be attacking and my own body. At the recent Behçets Syndrome Society conference in Bristol, Professor Fortune said that she has a date in October circled on the calendar every year for when they have to open up loads of emergency appointment slots as so many of us flare.

So how can we deal with all of this? My answer is be prepared as you can and a little acceptance.

The Nature Communications study above concluded that as well as a genetic change “diseases and other factors, such as nutrition and stress, could affect how genes function.” So lets build some of these into the survival guide.

How to embrace and survive Autumn

Autumn Activities – Try some of these spoonie friendly adventures to help with wellbeing

  1. Get outdoors. Take a visit to somewhere you can take in all the beauty of nature and how dramatically its changing at this time of year. Do what you can, you don’t have to hike for miles across farmland and forests to appreciate the changing landscape. You could take a car ride, visit a city park or sit in the last of the warm sunny days in your garden. Boosting vitamin d levels at this time of year can really help with the impending winter blues too.
  2. Get crafty. There are so many things that are nice to make as we want to spend more time being cosy indoors.
    • This month I am making a wonderful leaf garland, inspired by Hannah at Seeds and Stitches
    • I am embroidering fabrics in preparation for Christmas presents. If you are like me and like to hand make your Christmas presents, start now so you don’t put pressure on yourself.
  3. Get Cosy and warm and hermit without guilt. Get out blankets and hot water bottles ready for colder evenings. Give them a wash and some care before they do into their full winter sofa bound days. Enjoy activities that are away from screens (save those Netflix binges for sick days). Non screen time is much better for you and there are things that can occupy you. I’ve just found a new love for jigsaw puzzles!
  4. An Autumn Feast – Wow there’s food aplenty at this time of year, especially after a long hot summer, heres how to make the most of it. Enjoy homegrown fruits and vegetables. If you’re like me and have a garden then at the moment you’re probably overrun by crops such as tomatoes. When I’ve had the energy I have been picking them in droves and jarring them as passata. A basic recipe can be found here and its easily adapted to include herbs and spices you’ve grown too.
    1. Get to a local food festival and treat yourself to something scrummy. Food festivals re great at finding a huge variety of foods and you’re more likely to come across diet friendly snacks too. Ive been to two in the past three weeks including a chilli festival!
    2. Go on a forage. From September onwards, you can pick a huge amount for free from forests and hedgerows. Pick fruits such as elderberries, blackberries, rose hips and more. I turned my elders into a vitamin c boost spiced syrup and my hips and chillies into a spiced jelly. Theres also other treasures to be found like sloes, bullaces, crab apples, cob nuts, sweet chestnuts, mushrooms and fungi… just remember to only harvest them if you are 100% sure you know what they are!

Autumn is transition, change and drama. In slow living it’s the time to prepare for what’s ahead. Don’t rush it, save your spoons, enjoy the beauty and prepare for the winter ahead.

To find out more about things mentioned in this post visit…

How to find joy

  1. Walk with a dog, more people talk to you than if you walk alone
  2. Use the ‘golden hour’ to take a photo and marvel at your skills 
  3. Wake up just to see the sun rise and do step two. You’re allowed to go back to 
  4. Laugh really really hard till it hurts. Friends and YouTube videos help
  5. Make someone cake for no reason and share their joy 
  6. Show a child ‘wonder’ and watch their joy, it’s infectious 
  7. For slow burning joy plant some seeds and feel joyful each time you see them grow a little bigger, and think ‘I made that happen’ 
  8. Light a fire, indoors or out, and spend time roasting parts of your body till they go red. Decide it’s probably bad for you so sit and stare and getting lost in the flames 
  9. Eat cheese and don’t feel bad
  10. Climb as high as you can to get a really good view

Child

Being a child is climbing the biggest hill and looking at the view and finding the forbidden forest on the horizon. 

It’s finding an old biscuit in your pocket and thinking nothing of eating it with fluff and all.

Something moves out of the corner of their eye and it turns into a ninja hunting through the leaves.

It’s valitldating the world by counting things and trying to be a exact when you’re  wildly out by days.

Only you know the story about the time a hedgehog flew onto the washing line in a great gust of wind.

It’s wobbling a tooth convincing yourself it will come out soon so the tooth fairy comes again. 

It’s the promise of pudding for breakfast if you get to bed on time ( also known as dinner too late).

Everyday means a new girl to be your girlfriend and ask to marry. It’s over quicker than it began. 

It’s using words like ‘apprehensive’ because  they sound made up and could mean anything you desire.

It’s being eternally exited about tomorrow because there’s always another adventure on its way…

Blink and you’ll miss it.

The sun barely shines in the bright cold sky. The cold creeps in every gap and forgotten tuck-in.

The bonfire burns old whilst the smoke writes the memories across the sky. Warming the sun bleached snow as it melts into clear furrows.

The land sighs as it sleeps, turns over, seeing the Sun isn’t shining she goes back to her dreams. The excitement and magic melts away, the only day you wish the sun took leave.

In a day the stream flows. Playing it’s cool melody on the slowly warming rocks. The pond might be frozen but it’s path is too risky to find out.

With fingers wrapped in gloves that make them too cumbersome. Take off the gloves, use your hands briefly before they freeze and become just as clumsy.

The crow carries the sound of winter on its breath, Its black heart never dies.Only chased away by birds of song, shrill and tinkling, dancing in the fragile sun.

All that’s left of the snow is the snagged fleece in brambles; fake snow that sparkles with dew. My fingers bleed on it’s purity as I snatch it from the branches.

Pines that defy the cold breathe their sent into the warming air. Something is afoot, but blink and you’ll miss it.

 

Photography Lesson #1

You may remember that a while ago I asked for people to donate or exchange creative skills with me. I wrote a post all about the adventures I would like to go on. You can read it here.

On Saturday morning I was lucky enough to be offered a beginners lesson in using my camera with Pete Fry.

We got up early, wrapped up warm and headed off to Seasalter. I love the beach in winter with it’s washed out colours. It was a misty morning across the marshland and perfect for some beginner shots.

Pete patiently explained how to use the exposure, shutter speed and ISO on my camera. I just experimented with what worked and what didn’t. How to make changes to get more interesting shots. I still have a lot to learn!

Its just a start but here are my 6 fave shots from the morning.

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Thanks to Pete for his patience and insights. If you would like to swap or donate me a creative experience please contact me below:

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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.

Stay on my shore

I often visit the sea in a little boat in my dreams and when I meditate. There’s more on this to come soon. I love the words in this beauty. At the moment my boat is broken out on the rocks. But I’m letting the smoke do the cleaning, the pages of my story are about to begin. Happy adventures all.

Stay on my shore, and don’t desert me
And if you go, the wind will blow you back to me
And if your boat is broken out on the rocks
It wasn’t anger but a longing
We feed the birds, syrup and seed
So they stay near, so we can see

Flashing red and blue amid the green
When the fruit has long since rotten
Rolled in the needles and wrecked our skin
Gave it all to be empty
Wrapped in leaves, wet and clinging
In reeds, so holy

We split the cord
Of cedar and holly
And lie indoors
Let the smoke do the cleaning
And sweeten our skin with the salt and a stone
There’s the pages of our story

Joan Shelley

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.