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…

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…

Creating a bedtime routine

When the clock struck midnight on 2017 I decided to not make a New Years resolution. In fact at the time I was probably drinking a glass of bubbly and wishing I was in bed already 😂. I decided that this year I would focus on my physical health, which as you may know, is problematic. Instead of overwhelming myself I decided that each month I would set one focus to work on. For the first two months l’ve done Veganuary, and tracked my water intake.

For March the focus was sleep and here’s what I learned by tracking and focusing on it.

Medication

In 2016 I wasn’t sleeping for more than 3 to 4 hours a night due to pain and mental health. Being that sleep deprived does bad things to your wellbeing and even worse things to a body coping with autoimmune. When I went into crisis I was prescribed quetiapine which was great as it knocked me out and calmed the mind. The pay off was sleeping ten hours, not being able to wake up, and being in a constant fog. I’ve had huge meds changes over the past 3 months and dropped down in dosage on tablets that help sleep. This means I’m sleeping less but naturally so this focus has really helped me focus on natural sleep.

Undisturbed sleep

So one of my worst habits is waking up at 3am and staying awake till 7.30 am. When you then want to be up by 9 this is no good. I often need to wee in the night and have a terrible dry and painful mouth. This combined with pain in my knees and ankles due to Behcets, or bursitis on my hips that creates painsomnia, means I just couldn’t get 8 hours sleep. The meds above helped but without them I am the most restless sleeper.

Waking up

So I always aim for the average 8 hours to get up around at about 8am daily. I’d usually use the iPhone bedtime alarm on the clock app but often I wouldn’t fall asleep in time, or I’d not feel refreshed from sleep when I did. I have restless legs syndrome so would find I couldn’t get off to sleep in time. I also used my Fitbit this month to track my sleep and found that my sleep was so restless. Not really a surprise, as I mentioned above, my sleep is so disturbed. But I also realised I wasn’t helping myself as when I woke up I would be tempted to watch something on the iPad to help me get back to sleep but it was doing the reverse.

So after all this trying to focus on the problems I’ve decided to try a different approach. I wanted to make a change to the way I get ready for bed so that I set myself up for a good nights sleep and feel more in control of the individual elements. So I created a bedtime routine and thought I’d share it with you.

Making your own personalised routine

So the first thing I did was to pick a bedtime. I chose 11pm so I could aim to wake up at 7.30am ish. Then I worked back in half an hour blocks to create a plan.

10.30 pm

As this is the bit right before bed so you want to be winding down. Take these moments for a last minute tidy, but nothing rushed or intense. Turn your bedroom back into a tidy sanctuary. I put my clothes in the laundry bin and make sure everything is hung back in into place. My clothes are sorted Marie Kondo style so it’s great to keep it this way. I also tidy away any beauty products and clutter from the day. It’s here I take my bedtime meds and then hop/ into bed with a podcast playing. Oh and I found the best thing for right before you settle down, a pillow spray by Feather and Down that helps you get off to sleep. It makes me breathe deeply to inhale the incredible scent which helps with relaxing. Set up your beside table to make this easier.

10pm

I chose this time to try to empty my head. I try to keep it simple and uncomplicated. In true bullet journal style spill your mind out onto a piece of paper > check your journal > make a to do list for the next day > fill in any habit trackers and memories/ gratitude journals. Finally I pack my bag with any books or letters and post needed for the next day. Set up a place to keep your things for the morning including a charging station for your phone and battery packs etc.

9.30pm

Stretch and move. I find a last bit of activity before bed helps to firstly make you feel like your body is tired and secondly helps hugely with restless legs later on. I love yoga with Adriene.

9pmScreen free time! Try as much as possible to cut out your screen during your routine. This is the hardest thing for me to do but it is well known that the blue light affects both our health and sleep patterns so I’m trying really hard. To force me off I use the app Moment. This sets bot a daily limit and screen free time. Try to do something enjoyable in place of your phone so you don’t get tempted. Like reading a chapter of that book you’ve not got round to, or grab that colouring book you were given in 2015 and never completed.

8.30pm

Begin the wind down with a little self care. Take your bath now, I like mine scalding hot so I can feel my heartbeat and my skin turns red. Apparently by raising your temperature in the bath it then lowers your body temperature when you get out and makes you sleepy. If you don’t fancy a bath or don’t have time make sure you take your makeup off earlier in the evening so you’re not too tired and give up when you crash into bed later. I’m also trying to get into the habit of getting my clothes out for the morning, the night before so I don’t have to bother in the morning. I use the Cladwell app to help pick outfits.

So that’s my routine. It’s ambitious I know but I’m dipping into it to begin with. I always go for the slowly, slowly habit learning approach. So maybe pick one of the things to do for a week. Feel free to make it your own and find what works for you. I’d love to hear about your bedtime routines in the comments.

The Jigsaw

Last night I dreamt of a jigsaw puzzle. It was double sided and so large that it wouldn’t fit the table. I kept trying to find paper or card for it to rest on in sections so that they were preserved whilst I focused on another section. Then I found bigger table to move it to but it would fill this one too. It expanded faster than I could manage. 

Everytime I attempted it I couldn’t remember which side I was working on. Then I’d complete a large section and feel good and a sense of achievement. Like a taunt, I could almost glimpse the larger beast. But then I’d realise another section had fallen apart as I neglected it to focus on the current one.

All this was going on whilst others were in and out of the picture. Some people came to help and got sections complete with me. Others came and their insesent chatter and advice hindered the process. All this was trying to be achieved whilst pleasing these people and juggling the pieces. I had to serve dinner, casually chat to people. Even the task of doing something for myself got in the way. I didn’t have time for anything for me and felt isolated and alone. 

I couldn’t tell what the bigger picture was. As I completed small parts people’s faces would appear and sometimes the people around me would know the story behind who they were. This bit I loved and it kept me going.

I got to the point where the jigsaw was so frustrating that it was easier to give up and live in the moment. To ignore it in favour of activities that I could enjoy that made me feel hapoy. But then it became the huge unfinished project. The big box of broken pieces and failure hidden under the table, threatening to explode from its box as it grew.

This morning I googled jigsaws in dreams and found they symbolise the different aspects of our life coming together. That you should take a closer look to see if all the parts actually fit and come together in the right places. Do they all belong?

This couldn’t be more apt as this week I’ve shredded my life once again and asked so many questions. Do I live in the moment because it’s easier and there’s less disappointment? Do I plan for the future, because everytime I do chance and disaster dictate anyway. Am I a hedonist who is so fearful of failure and pain I miss the bigger picture? 

I’m not sure I’m doing any of this right, and it all feels out of  control. Apparently life is exciting like a puzzle, because we don’t know what it looks like in its entirety. I just feel a little lost and would like a peek at the box lid please? Otherwise how do I know if all the pieces belong and whether I like the picture at all? 

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…

Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

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In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

Let’s Pretend…

Do you ever think we are just playing at life? Being different characters in some elaborate story?

I don’t really know where I’m going with this post because it’s mostly rambling thoughts! Maybe it’s being in theatre that I always see people as playing parts in their everyday life. Of course there’s  Shakespeare’s famous passage from As You Like It...

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And one man in his time plays many parts, His acts being seven ages. At first, the infant, Mewling and puking in the nurse’s arms.

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It hints that our lives are predestined, and in terms of ageing they are I guess. But when do we become these stereotypes and copies of our own parents? Just now I overheard my sister’s husband asking her ‘did you find the gravy boat?’. It made me smile, I wonder if he rewound ten years to uni he’d imagine ever uttering this phrase? Then I realised I don’t have a gravy boat, does that mean I’m not an adult yet!?

If we are characters can we choose the parts we play or the dialogues we speak, or do we say certain phrases just 4d2eef3c2201ad1d82e0ce3043a006c8to conform? This is partially true with the relationships we have with others. I’m a people watcher and listener and love to eavesdrop. Over the past few weeks I’ve had 3 hospital visits in which there has been an enormous amount of time to observe. It’s interesting watching the dialogue between patients and health professionals. Sometimes it seemed as though they’re having two entirely different conversations. The doctors hone in and focus on individual areas of the body or conditions. They narrow down and diagnose and defend their decisions from the get go. Maybe this is because the NHS has a focus on cuts and blame and its created fear and narrow practice? But what these conversations do are damaging, they create a dialogue in which the patient feels it’s their right to be healed and the doctor is constantly defending the attack. Neither lead to comfort or healing or 4db5a8f3a5b0b85573115a9dc7cfdd59treating someone as a human. Whilst watching I almost wanted to jump in and direct them like actors to resolve the conflict. It’s even more scary when you find yourself in the same conversations despite having seen them happen five minutes before and promising you wouldn’t. The way we are spoken to lures us in without realising and takes real effort to remove ourselves..

If we can change our dialogues can we then we change our relationships and outcomes? I’m a great believer in the fact we cant change others, only ourselves. Sometimes its good to examine how we speak 39a826434d0482e19e4b342e6b265ec9with others and shift our relationships to something that works better.

More importantly, I think,  it’s how we speak to ourselves that seems so vital. Our inner dialogue is with us every second of the day so if it’s in conflict or defensive it leads us to dangerous places. CBT has helped me recognise this and although its not an instant cure it makes us aware of catching those thoughts that are damaging. Also being able to see the positive lifts changes our gear and puts us in a better place.

Positive thinking is not an easy task to do, especially when drowning in negative thoughts. But the rule of attraction is strong and we can 0ae880eb77832884e8a19c3e3f357953certainly influence our paths by changing our thinking patterns. I love trying exercises and activities that help with this. I like Tiny Buddha’s 10 Tips to Overcome Negative Thoughts

Then there are the times that everything seems totally out of our control. I often wonder about things being predestined. My life has been a roller
coaster of events and emotions. Without being dramatic I’m sure that I’ve endured more than the average person. Sometimes I find myself wondering if it’s something written out for me or some kind of karma. These thoughts happen 81576b699d8a8a514f8f9c01113dfb10especially when I’m down on myself. I genuinely believed that I had a Christmas curse in the past. Just ask anyone who knows me well and they’ll confirm it.

e5c9e117e8a4050b05a4c1d031710423Since being really young I also used to fantasise about being part of a conspiracy. I used to lie on my back and l9979724392b6d1da5b80638e18b720c4ook into the blue sky. Somehow looking into the brightness meant that I could see these little circles that I assume were the shape
of my pupil and iris. In my head they were eyes of bigger beings watching me, not threateningly but there watching my life go by or having a say. I know this sounds a little odd but I guess it’s part of figuring out the world. When years later I finally saw the Truman Show it played on my mind for years days. Even now I get flashes of thinking I’m being watched or there’s cameras everywhere. I did giggle when I discovered it was an actual condition. Not that I need another diagnosis but I’m sure I’m borderline Truman Syndrome

So in conclusion its seems like some of life we can control and other things happen and we can choose how to react. I’m not sure if any is predestined but I can’t think of a better way to say how to manage it than this:

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On the road…

…to I don’t know where. Wandering with out purpose is thrilling, terrifying and alien. I tend to be someone who need goals and aspirations.

So as a friend said today, you’re just at the point of hitting the reset button. It’s time to start again. So I’m ‘getting my ducks in a row’ and beginning a new journey.

I love words and collect them on my Pinterest board. Today I took a little peek back at a few to inspire this little journey of mine:

 

Parenting Yourself

So the last few weeks have been living in crisis. Caused by pain, mental health, relationships, work and income. All at once, in one big lump. Pow, taken out by the world!

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3 emergency hospital trips, 1 breakdown, 1 job lost, 1 relationship ended… It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

What it has done is made for a very interesting discussions about life. It’s been useful to surround myself wth my friends and those who have been in the same place.

Today’s post is dedicated to Helen who has been amazing. Having been through the same shit she’s been one of the most resilient people I know. Oh and she’s a reflexologist too. I cannot recommend her enough for any kind of healing!

12068846_939860746086783_403464652320274183_oHer Facebook is here, and website is here

A few of her wise words include:

“So the world currently feels like a very scary, lonely & overwhelming place yeah. It’s all shit, there’s no-one you can rely on and you’ve just not got any more energy to keep fighting it all 😭

I’m not in your head but I can recognise it: I mean, when even your own fucking body seems to hate you what’s the point eh FFS!

But there is a point. It’s horrific right now & you prob can’t see any light.  Let me reassure you, there is a light. It’s called resilience, a strength you didn’t know you had, friends & vague contacts that will step up & help you find a path where you didn’t know there was one. It’s chaos, but out of the storm there’s new horizons, ones you’d never dreamt of before.

I’m not saying it’s easy, that’d be a lie. Trust me Vicki, it’s an ending but also a new beginning. It hurts like fuck. That hurt eventually turns into the determination your new self will rely on. Among my closest friends we no longer call it a ‘breakdown’ but a ‘breakthrough’ because in order to be true to ourselves the pain has to be faced & the old patterns need to be broken.

People don’t understand what it’s like living in pain every damn day. For doing that in itself , AND continuing to work as long as you have, you have a strength that most do not. Be proud you’ve made it this far. And with or without a bloke, your journey is only just beginning.”

These words were my solace in my darkest moment. They became a mantra to cling to. I love the idea that when in crisis experiencing a breakthrough rather than a breakdown. Maybe my list should look like this:

3 emergency hospital trips signs that I need to ask for help with my conditions, 1 breakdown breakthrough, 1 job lost assessment of my career, 1 relationship ended  6 close friendships formed and countless true friendships beginning … It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

Today in our feet pampering session we discussed parenting. She suggested writing down all the things we want from our parents (theoretical ones if you are reading this mum and dad). Then you cross out parents and make it a list for how you want to treat your self. So here is goes…

I want my parents to be I want myself to be:

  • Supportive
  • Non judgemental
  • Not to know best for me but accept I know this
  • Kind
  • To listen without an answer
  • At the end of the phone
  • Strong
  • Not pull me into their dramas!
  • Not to take on my illness as something they’ve done or passed on
  • Trust me

Well that was a lot of writing and self led therapy for one day, I’m off to bake a cake!