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)

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Find Your Superpower

What’s your super power? Well I’ll tell you a story about mine…. A while ago my sister had a gene test come back as an abnormal mutation, and as soon as I heard this my brain jumped to the X-men who are all ‘mutants’ with super powers caused by mutated genes. I mentioned it to my doctors (not the x-men bit) at the Behcets Centre and they tested me and unsurprisingly it came back as positive too (TNFRSF1A variant R92Q incase your interested, it’s sometimes associated with TRAPS and MS neither of which I have). Since then we’ve been joking about what our  super power may be, I have ask my doctors when the power is going to appear, we’re all still waiting patiently whilst they look bemused. But it has got me thinking about how recently people with disabilities have been represented as superheroes and what the impact of that is.

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Image from http://superheroseries.co.uk/ who  are ‘the UK’s one and only disability sports series for the Everyday Superhero!’

There’s been a big change in the way people with disabilities have been seen in recent years. The Paralympics in London 2012 showed us athletes who were able to do everything despite having faced illness, accidents or birth defects etc (see Channel 4’s Advert Meet the Super Humans, it still gives me all the feels). Even the popular tv chat show, The Last Leg, sprung up from the games with 2/3 of the hosts having prosthetics. It championed disability and difference through comedy and sport. It’s still broadcasting in the prime Friday night spot over 6 years on (though it has sadly has moved away from its original roots of disability visibility and rights). With its triumphant music, Public Enemy’s Harder Than You May Think, reporting of the games it thrust people with disability into the mainstream as Superhuman, the true X-men.

One of the show’s prominent features is its hashtag #isitok and is used to ask is it ok that… type questions about current issues. In the beginning these were disability related such as.

 

But here’s where I want to ask my own question. #isitok to be disabled and not be a superhuman? #isitok to sometimes be weak and fall apart? #isitok to just be a normal everyday person?

Am I a superhero or a super victim?

Being chronically ill means that I often find myself sometimes being a little bit super hero and sometimes being a little bit the victim, but mostly a real person thats none of these.

I am very aware that people think I’m always winging about being ill or broken or in pain and its true (theres another post coming on this soon). The fact that the constant pain is held in 90% of the time is a feat of superhuman strength that you don’t see. BUT there’s points at which I reach crisis and fall apart and these are my ‘victim’ moments. These points usually come at times when everything reaches a peak pain levels, or I have fought so hard with benefits and housing and come across another stumbling block. At these times everything falls apart and I don’t want to be strong. This is the time that people offer words of support and point out how string I am the rest of the time, how i’m superhuman.

Most of the words about being strong come from others as words of support. I completely hear when someone is saying you are so strong and it is a compliment. It does boost my self esteem because it acknowledges that 90% of the time that my mouth is shut and fighting the pain, or the loss of my life as I knew it. But I’m going to say this because its the truth, not because I want to offend people: at the same time as it being a compliment it is also a burden. I don’t want to always be the hero of this story.

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Sometimes it would be nice to crumble and for that to be ok. To fall apart and someone else play the hero. Sometimes I’m tired beyond tired. The pain has worn me down to the point I can’t live with it anymore. The system of benefits has broken me and I don’t want to feel like a criminal for asking for help from the state that I’ve paid into my whole life so far. I don’t want to hear ‘stay strong’ when I can’t see an end to the housing crisis I’m in. I don’t want to hear this will change when 2 and a half years is my limit and I’m saying its gone on too long. I just want to fall apart and that be ok.

The pressure to perform

So I think you get that living with a disability isn’t fun and we to be honest we are not always feeling superhuman. We are ordinary people and like everyone some like playing sport and others don’t, a small minority will be athletes. The risk of presenting people as superhuman when they compete with a disability means that the rest of us that don’t are not doing enough to help ourselves. To be honest I hate playing sport, especially those played on the olympics (I do love watching them though). This is probably because I’ve been hyper-mobile my whole life and sport really hurts! But it’s just not in me to do it. Does that mean that I am a failure even at disability?

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Invisible illness and sport

When I look at the Paralympics I do also want to ask is it also ok to ask why invisible disabilities are not included in the games? In fact we are rarely represented at all on screen or even as disabled people. How, with fatigue, can we train and practice to compete? How with joints that dislocate can we complete in running, leaping and jumping? How with fluid in our joints and excruciating pain can we whizz round a basketball court or hit a volley ball on the beach. I think all this highlights is that the disabled community itself still hasn’t accepted chronic illness and invisible illness fully. So I’ve asked myself what sport could we compete in? Where are the events for napping, getting dressed, walking the dog? Because sometimes just daily activity is our superhuman feat: that getting out of bed in the morning is like flying to the moon and back.

I’m going to finish this post with an anecdote from a close friend who has narcolepsy (she’d be my competitor on the napping event for sure). She once asked me ‘If you could lose your legs or have a chronic illness which would you choose?’ And my answer in a flash was lose my legs, and she said she had answered the same in a conversation with her husband. It in no way comes from a place of saying losing your legs isn’t life changing and devastating, because it is. But it comes from a place of certainty and being able to adapt. With losing my legs I would learn what I can and can’t do and work with this. My capability wouldn’t change so drastically from day to day, but be a constant thing I could learn around. It wouldn’t be easy but I’d still have my health and energy. I could work towards something like the Paralympics.

Syndromes like Narcolepsy, Behcets, Auto-immune, Fibromyalgia. Lupus, RA, EDS etc. don’t allow for this. They are tricky because its like flu everyday and its unpredictable. They rob your life in a different way. In addition to this the symptoms are often not seen by others so completely misunderstood. You don’t see that under my clothes my joints are hot, full of fluid and dislocating. That I have sores that burn and ache. That at the beginning of the day I can’t walk properly for 3 hours or that at the end I’m moaning in bed from pain of the day. That my biggest spend this Christmas was on eco incontinence pads. That the fear of running our of painkillers produces panic. That I’m tied to medication and its a constant worry. That my diagnosis is permanent, incurable and my life changed forever.

The Paralympics 2012 began to change the world’s view on disability and watching that superhuman advert still fills me with awe. But it is only the beginning. The fight doesn’t stop here. I know that I am not represented by these athletes but I know they’ve opened a gateway into acceptance. That those few people competing have changed the view on what disability means. But most importantly they’ve made disability visible. The next steps are to make ALL disability visible. But to do this in a way that recognises that superhuman means coping with the everyday. I got up and wrote today, no one will give me a medal for that. But I am happy that I’ve achieved this.

I am a superhero of napping, baking, gardening and making. My superpower is creativity. I’ve often been encouraged to apply for the Great British Bake Off but I know I couldn’t because of my disability. I was so encouraged to see Bryony this year compete and that her disability wasn’t drawn attention too, she was a competitor, that was it. I would love to work with producers to find a way for this dream to happen but I just don’t know how it would work.

I found my superpower because it is my everyday and my drive. Everyone has their own too you just have to dig to find it. I also know is it is ok to be strong and also sometimes weak.  It is this that makes the best super hero story, the ones we love are the ones that are human and mess up. We are all super human, some are just a little more tired and achey, but we are just us.

Whats your superpower?

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.
    • I am embroidering fabrics in preparation for Christmas presents I am making
  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…

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…

Capsule my life

As a spoonie I waste so much flipping time staring (hopelessly?) into my closet every day. I’m too tired to see all the clothes and too tired to rummage. I don’t have a whole lot of money so cant afford new things.

I often don’t want to wear things because they hurt my skin or make me uncomfortable. I can’t get rid of them because they look so lovely. 

As you know I love an app so when I found Cladwell I thought I’d give it a whirl as it could just reclaim the spoon of energy spent in front of the wardrobe each morning.

They say: Get daily outfit recommendations, track your outfits, discover the right items, and buy fewer things, all without taking a single photo.

I say: The uploading and choosing wardrobe items was a huge task, I’m not going to lie. I had to get help. But I was determined and did it! Apparently I have a lot of clothes. 118 items including shoes. So I googled the average and some site somewhere told me the average for a woman is 103. So I’m not doing too badly hey? Just a little over average…

They say: What To Wear. Every day, Outfits for iOS will send you outfit ideas based on what you currently own, what the weather is like, and how often you wear an item. Swipe through the options, and log one for the day.

I say: Since starting I’ve really enjoyed the outfits its chosen everyday. You still get a choice and can swap items in and out. Everyday I’ve worn something weather appropriate. I’ve worn new combos of clothes that I’ve never previously paired. In fact I have 11,000+ combos to try. Maybe my wardrobe is on the large side…

They say: What To Keep. Outfits for iOS keeps track of the items you wear the most, so you can treasure what you love, and get rid of what you don’t. Feel great about cutting the clutter while looking great.

I say: So yes the app costs money after the free trial but I hope to be wearing my existing wardrobe lots more, being excited about old clothes and seeing them as new. This fits my slow living goal perfectly. I already wore a pair of boots that I haven’t put on for over 5 years but can’t part with. I’m hoping I wont be spending on clothes for a while so lets see if it saves money. I also hope at the end of it to reduce my wardrobe by seeing what I don’t actually wear. and maybe sell a few items on.

 

 

They say: What To Add. Don’t go shopping without a plan. Before you visit your favorite stores, Outfits for iOS shows you which types of items go best with the clothes you already own. Cladwell doesn’t sell clothes. We help you buy better stuff, and less of it.

I say: we’ll see!

In the meantime heres my link so you can get a free trial

Click the monthly subscription and put wolfatmydoor in the promo code section.

Facebook-Cover-Image-Outfits

 

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…

Audition (The Fools Who Dream)

Well this was just beyond beautiful, and this comes from someone who often dislikes musicals. La La Land appealed to the old fashioned wild one in me. the one who gets up and tries again, takes the knock down, and finds beauty. I sobbed my heart out.

My aunt used to live in Paris
I remember, she used to come home and tell us
stories about being abroad and
I remember that she told us she jumped in the river once
Barefoot

She smiled
Leapt, without looking
And She tumbled into the Seine!
The water was freezing
she spent a month sneezing
but said she would do it, again

Here’s to the ones
who dream
Foolish, as they may seem
Here’s to the hearts
that ache
Here’s to the mess
we make

She captured a feeling
Sky with no ceiling
Sunset inside a frame
She lived in her liquor
and died with a flicker
I’ll always remember the flame

Here’s to the ones
who dream

Foolish, as they may seem
Here’s to the hearts
that ache
Here’s to the mess
we make

She told me:
A bit of madness is key
to give us new colors to see
Who knows where it will lead us?
And that’s why they need us

So bring on the rebels
The ripples from pebbles
The painters, and poets, and plays

And here’s to the fools
who dream
Crazy, as they may seem
Here’s to the hearts that break
Here’s to the mess we make

I trace it all back
to then
Her, and the snow, and the Seine
Smiling through it
She said
She’d do it, again

 

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.

 

Happy New Year with Bullet Journaling

So last year I made New Year’s resolutions then as you may know ‘life got in the way’. I have a habit of starting things and not finishing them, I carry a lot of guilt about it. Partly it’s my personality and getting excited about the next new shiny thing that comes along, dropping the old boring thing I started. It’s also having multiple chronic illnesses which tend to dump on everything. Oh, and then that life bit, I’m not the luckiest soul and 2016 was an absolute shocker!

So this year I debated on whether I should do the whole resolutions thing again. I thought about making things realistic, or achievable. But that’s just not me, I need to be interested and excited and reach for the sky. The difference is how I react when I come thudding back down to earth.

Last year I dabbled with some Bullet Journaling and wanted to continue with a brand new journal for 2017. For various reasons I’ve always shied away from journaling ing and committing to paper. A Bullet Journal was the ideal balance between a to-do list and a diary for me. I began with a basic journal based on this article and bulletjournal.com.

So on the 1st I made an Amazon list of fancy pens and a new Moleskine notebook, and then realised I was falling into my old habit of overspending. So I raided my art materials and as predicted had lots of beautiful materials already to work with.

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So here is what I did:

  1. I left a page spare at the front for my index/ contents. Every page is numbered in a bullet journal and every entry is logged on this page.IMG_3635.JPG
  2. I turned the page and thought about 2017 and brain dumped all the hopes and needs onto the page. I didn’t limit myself, I just poured my heart out…IMG_3638.JPG
  3. Next I looked at the ‘cloud of words’ and put them into categories. I wrote them as a list then made these into columns on how much time and effort I wanted to put into them. ‘Being secure’ is at the top of my list, unsurprisingly, as at the moment I feel so insecure. I colour coded them so I could later see how much time per week I was dedicating.Processed with VSCO with t1 preset
  4. I took each category and thought about how I could achieve them. Theres lots of cross overs and you’ll see in the pictures one category feeds another.Processed with VSCO with t1 preset
  5. Into my life, which is chaotic at the best of time, I wanted to introduce a routine. So I began with an easy morning routine to follow everyday. I aim to create a bedtime one soon to go with it. 
  6. I then divided the activities from earlier on into my first to-do list of 2017. This I divided into ‘one off tasks’ and ‘repetitive tasks’ that happen daily or weekly.Processed with VSCO with t1 preset
  7. I then added a year planner to be able to see the whole year month by month.Processed with VSCO with t1 preset
  8. Finally I delved into January. One page for the whole month day by day. Then I transferred items from the 2017 to-do list into the monthly one
  9. Finally I drew out the week by week journal and added a key. I also included a space for tracking my health and daily gratitude. My key is the same as the standard bullet journal key
    • X = Task Complete
    • > = Task Migrated
    • < = Task Scheduled
    • o = Event
    • – = Note
    • * = Priority
    • ! = Inspiration
    • Eye = Explore

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  10. It sounds complex and labour intensive, and in a way it is. But I think it’s worth it to have a practical journal that works for me. I already love and treasure my 2016 journal, as painful as the moments were that fed it. 

I know there are many prettier examples out there, but mine is mine and works for me!

Finally I read a chapter today about beginning a new project or learning something new:

‘In the beginner’s mind there are many possibilities, but in an experts there are few.’ Suzuki Roshi in Pema Chodron’s ‘The Places That Scare You’.

Chodron goes onto say that we all begin somewhere and at every stage of learning or activity we should  be ‘open, flexible and kind’. Resolutions should not be absolute but ever shifting guides to help us learn or steer us. Our life is an experiment and we are not born as experts. She concludes:

‘At the end of activity, whether we feel we have succeeded or failed in our intention, we seal the act by thinking of others, of those who are succeeding or failing all over the world. We wish that anything we learned in our experiment could also benefit them.’

So I’ll be doing just that, learning from the process and not judging myself on the results. I will also share this latest adventure with you…

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.

crisisbreakerscloudsedith-hutgrassesdogs-and-huts

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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