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…

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…

How to make plastic bottle planter | Gardening on a budget

Since my life style change, including being unable to work, and being ‘on benefits’ I have been forced to slow down and re-evaluate spending and consumerism. Yes it’s a challenge, but I have made some delightful discoveries along the way. I’ve always enjoyed gardening and growing my own vegetables and plants. In fact my plant addiction is a little out of control. But I’ve got to the point where I don’t have the money to spend on a lavish garden or a house full of the latest plants. I also want to make the garden work for me and feed me.

Being creative, and little bit crafty, I’ve managed to garden this year on a minuscule budget. Most of this has been by refusing to buy new accessories and tools for the garden such as pots, propagators and netting. Instead I’ve decided to make my own using what most people would class as rubbish. This has tied nicely with my war on waste ( you can read about it here), and has forced me to recycle things from around the house in order to grow my plants.

My first tutorial ( I’m going to attempt a series) is how to make a plastic planter from an old bottle. For those who don’t know this is EarthDay, a day dedicated to making us aware of environmental issues and care for our planet. This year, like we have seen in many parts of the media, the focus is on the war on plastic. So I’ve made for you a guide on how to make recycled bottle planters. The tutorial is for a basic hanging planter but you can make variations to suit your needs.

Instructions for a recycled plastic bottle planter

You will need: A plastic bottle, scissors and string or wool

In addition to this you could also use lollipop sticks as labels, pretty tape to decorate the bottles, a , pokey stick to help make holes, and a craft knife if you prefer cutting this way.

Oh and don’t forget your need some soil and some seeds or seedlings.

Step one Remove any labels, so far these are usually not recyclable, boo! Draw a line around the circumference of the bottle about halfway down. Then draw a tab coming out of the line so this will become your hanger.

Step two Cut around line until you get to the tap and then cut out so it becomes all part of the lower part of the bottle. Then separate the two halves.

Step three With the cap still on the bottle carefully push your scissors or pokey all through the bottle cap to make a hole big enough for the string. Then thread your string through the hole you have just made so half is on the inside of the bottle and half is on the outside. Tie a knot so the string can’t pull all the way through the cap. You will also need to make a hole in the tab if you want to hang your planter by using string.

Step four Put some water into the bottom half of the bottle. Turn the top of the bottle upside down and placed into the base with the cap facing down so the string on the outside dips into the water.

Step five Fill the upturned bottle top with soil and plant your seeds or seedlings.

Step six Thread string through the tab to hang your planter. Alternatively you could staple the tab to a fence or shed. Now the plant pot is finished keep it in a sunny place.

The plant pot is self watering as the string soaks up water the plant needs just like roots would. You just have to keep an eye that there is water in the bottom half of the bottle and top it up as needed.

Variations

  • Add another half cut bottle to the top to make a minute to greenhouse. When you do this the bottles become their own microclimates.
  • As the bottom is flat and so should stand up if you want use the planter on a tabletop or windowsill.
  • I decided to decorate some of mine using Washi Tape to make them more colourful.

These are so simple to make and you can make them with children, as long as you supervise the use of scissors and a sharp knife. I made a ton of these as plastic bottles seem to be in abundance and they’ve worked perfectly for growing peas broad beans and sweet peas. I’m also trying out some ginger root, turmeric root and lemon seeds see if they will grow too.

I’ve made a handy printout sheet that shows this tutorial in brief. Please feel free to use and share it.

So hope you enjoyed this tutorial I’m planning to make some more and my next one will be on other ways to use plastic. And I also will do tutorials to recycle paper and glass, alongside growing vegetables from the leftover scraps. Let me know in the comments how you get on with your planters.

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

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

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.

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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.