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…

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…

I will tell you about selfish people…

Rupi Kaur

“I will tell you about selfish people. Even when they know they will hurt you they walk into your life to taste you because you are the type of being they don’t want to miss out on. You are too much shine to not be felt. So when they have gotten a good look at everything you have to offer. When they have taken your skin your hair and your secrets with them. When they realize how real this is. How much of a storm you are and it hits them.

That is when the cowardice sets in. That is when the person you thought they were is replaced by the sad reality of what they are. That is when they lose every fighting bone in their body and leave after saying you will find better than me.

You will stand there naked with half of them still hidden somewhere inside you and sob. Asking them why they did it. Why they forced you to love them when they had no intention of loving you back and they’ll say something along the lines of I just had to try. I had to give it a chance. It was you after all.

But that isn’t romantic. It isn’t sweet. The idea that they were so engulfed by your existence they had to risk breaking it for the sake of knowing they weren’t the one missing out. Your existence meant that little next to their curiosity of you.”

Rupi Kaur, Milk and Honey

Gosh this speaks so loud to my soul

Who am I?

So…

I don’t know where to start this one. But yesterday I was asked who I am. I was floored.

I am Vic.

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But who do I present myself as? For years I’ve been me but maybe not me? Its such a confusing question. Can knowing who I am be the answer? I can’t answer it, partly because its a fluid thing and partly because I just don’t know.

I am Vic. I’m creative, passionate and imaginative.

 

For years I’ve played at being an artist and I did ok at it. I’m creatively inspired by stories true and fictional. I’m passionate about the power of the Arts and working with others. My imagination has taken me on some crazy adventures and projects, all of which I’m proud.

Over the past few years my ability to work effectively has been swallowed up by my physical and mental health. At first I said yes to everything in my excitement to be working in the Arts. I was good at what I did so work came to me and despite the struggle in terms of funding and consistency I was happy. The work grew and my company Wide Eyed Theatre was born. I worked in multiple roles for the company, as a youth worker, sessional lecturing and freelance. All aspects I have loved, and despite being poorly paid, I know along the way I have made a real difference in young people’s lives.

Maintaining this was a struggle and at some point amongst all the anxiety fear, pain and fatigue I stumbled. Something went wrong inside and no matter what I did I just couldn’t keep up or manage everything. Work was so important that the first thing to go was my social life and me time.

I began to reduce my life and cut out the extras that tipped me over the edge. I was stuck in a cycle of working or sick. I gradually got more and more fatigued, I’ve often described it as every day feeling fluey. I’d work then collapse and repeat. I had to take long breaks and nap or I just felt like I’d vomit. Everyday off and every nap carries guilt and I felt lazy and like I’d failed. So I’d go back into it full pelt, desperately not wanting to let people down. It wasn’t working. I began to feel drained creatively too. Partly from not feeding myself imaginatively by slowing down and allowing moments of peace and beauty. And partly because I was giving so much to everyone else and not myself as I was so scared.

So I fought for a diagnosis to understand why I felt the way I do. Why everyday is a struggle and why I let people down. I got used to wearing the label of chronic illness and found it easy to hide behind. In a bad place physically and mentally I also got into a bad place in a relationship and financially.

In 2013 I was diagnosed with Lupus. Since then its bounced around and things have been added and subtracted. I wrote more about the labels here. My current diagnosis stands at

  • ‘Lupus’ like auto immune disease1397203fa8512bc777ae182f1060e702
  • Suspected Behcets Syndrome
  • Joint Hyper-mobility Syndrome
  • Fibromyalgia
  • Chronic Migraine
  • Bipolar
  • Borderline Features
  • Depression and Anxiety

I fought to be recognised as ill and not fobbed off and I feel like a diagnosis means I’m taken seriously and its not in my head. The trouble is that I’ve fought so hard that its consumed me. Lupus and medical took over even back here I was discontent with the Vicki that said ‘Hi I’m Vic I have Lupus’ before anything else.

So when I was asked who I am it jarred and crushed the part of me that has become swallowed by the wolf that is chronic illness. Its my defence mechanism but has made my life so unbearable that I am the wolf.

In 2016 it all imploded and I’ve been left stripped of everything. My mental and physical health is fragile. I’m currently at risk of being made homeless and bankrupt. I’m stepping back from work due to feeling so breakable. I have nothing, yet there is glory in being stripped bare.

Then in this conversation a different suggestion was made. One that may yet have viability. I am still Vic, I have a chronic illness and this is how I manage it. This is how I choose to live with and tame the wolf.

I am Vic. I’m creative, passionate and imaginative. I am fierce and tame wolves.

Disentangle

ropeknife

You say we were two lives that need to disentangle.

But really some of each other became the other one.

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

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

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

If I do this then I crave the bad.

Maybe I let a remanent of us remain?

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

More than that its like something that’s diseased.

You cut the tumour out stop it spreading.

I find rancid places to cut you out.

A surgeon, a butcher, a self-harmer.

I peel the taste buds from my tongue

because they shared a love of flavours,

that only we could understand and create.

A menu bittersweet.

I gauge the black place in my heart.

Like cutting the mould from cheese to preserve the rest.

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

and you’ll end up all bile inside.

I remove objects and reminders from my home.

Like cutting the pieces of a stencil,

to make it make a new pattern.

I like the way it looks better than before.

I cut poisonous people out of my life,

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

Scared of their judgement,

because that’s what I became.

Some cut the story from the paper

in order to remember and celebrate.

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

is better forgotten as a manipulative lie.

I cut the nails from my toes,

to stop gouging out the flash at the sides.

Occasionally I don’t do it straight enough,

those feet that danced together become hot and infected.

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

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

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

and it’s still possible to hurt.

Maybe I’ll let a small piece stay,

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

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

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

On & On

Heard this on a TV show, haven’t heard it for years. I don’t know if its the closest I’ll get to understanding my recent break up from the other perspective. Was this why he was so horrid?

 

All the songs that I’ve sung here
More often than you know
‘Cause you’re the lull that I’ve countered
More often than I’ve let it show

And I, I wish you would leave me
And I, I wish you would go
And I, I wish you didn’t need me
And I, I wish I didn’t love you so

‘Cause I just can’t go on
So please don’t do me wrong
No, I won’t do you harm
My love for you goes on & on

There’s no one else I want beside you
Give me a cold shoulder to cry upon
You’re never anywhere I find you
You’re never anything I rely upon

And I, I wish you would leave me
And I, I wish you would go
And I, I wish you didn’t need me
And I, I wish I didn’t know

But I just can’t go on
So please don’t do me wrong
No I won’t do you harm
My love for you goes on & on & on & on

No, I just can’t go on
So please don’t do me wrong
No I won’t do you harm
‘Cause my love goes on & on

And on & on
And on & on
And on & on

Read more: Longpigs – On & On Lyrics | MetroLyrics

Sticks and Stones

sticksandstones

Sticks and stones may break my bones

But your actions hurt me more.
Your sticks were words you brandished

The light inside was done for.

 

Your stones were all the burdens

Put on us through pain inside.

 

My wounds are already mending

But the scars will never hide.

 

A childish story of spite

Spun by your pride and ego.

 

Why it happened I can forgive,

But I’ll never let cruel go.

 

A lie upon lie, over again

To make me question the real.

 

Now its over, dead and gone

I can finally heal.

 

 

 

Do you know what’s really tough?

Only believing that you are deserving of bullying.

Being showered by love is the one and only time you’ve feel it,

Because it’s the one and only time you have,

And now your chance has gone.

 

You think you know that no one will want you.

It’s easy when your hearts been stamped on again and again.

You will continue to be lied to, over and over,

Because you are so small it doesn’t matter.

 

You’ll always tread on eggshells,

Because your being is wrong for this world.

The guilt you carry never lightens,

And they will always know exactly which button to press.

 

It’s an addiction that goes round in a loop,

Empty images and sad songs.

Now they tell these lies to another,

And they’re welcome to them, enjoy the ride.

 

Right now I’m being me, I think,

Being good enough, being loved in the right way,

Breaking the cycle and fixing what was broken,

That bit that was broken before they met the Narcissist.

 

They can’t hurt you more than you hurt yourself,

If there is nothing left but love in it purest.

Dear Narcissist do you know what’s really tough?

Me.

http://thoughtcatalog.com/john-w-howell/2013/05/a-narcissists-love-letter/

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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…