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? 

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

#SeekingBeauty

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Right now I’m no words all emotion. I’m genuinely ūüíĒ ¬†for America (and the rest of the world). We are a global community and need to extend our love beyond it’s borders.

My dear friend Beth @wisewordsfest¬†posted her son’s wise words: “If we all stand close to the people that are unkind then they’ll learn from us how to be kind. If we are all a long way away they will never see that being kind works better” – he’s 5 going on a 105 in wisdom.

There’s so much truth and hope in his words. So let’s all take stock and breathe. We need baby steps to figure out this crisis on humanity. As part of my recent breakthrough in recovery I started using the #seekingbeauty. Finding small and beautiful sights and moments in the day. Please use it too and share all these tiny things that make the world a better place in the comments below or with me on instagram. If you use the # or tag me I may share a few of my faves¬†in a future blog post.

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Letting go…

It’s over, dead, gone. There is no going back only forward. I need to make room for all the love that’s out there and being thrown at me in abundance. So today I’m lettin go…


Letting go means more room for giving and recieving love. Today this is my affirmation. Tomorrow it’ll be something more. I’m excited about my new adventure. 

Sharp enough

A friend posted that they could see me ‘developing an edge sharp enough to cut through this’ and carve a new beginning.

There’s been a lot of soul searching going on inside this skull over the past few weeks. But it’s all felt like a dull bladed knife trying to cut through lead.

You feel that you know yourself so well and can see your path. In a heartbeat it changes. A few cruel words that bring your world crashing down. Everything is bought into question. The smallest of routine, even the way you make tea or breathe.

The problem is all the destruction is so silent. Everything has changed for you yet the world still silently remains. It carries on without you. I’ve been walking¬†the streets with voices muffled and blinkers on, yet inside a war rages.

All the rituals you made no longer have purpose and you carry on performing them till they are redundant and ridiculous. I caught myself hanging your washing on the line and didn’t know why… energy wasted on you. Taking two mugs out instead of one for coffee. Every word spoken has to be corrected. ‘We, I mean I.’ ‘Us, I mean me.’

Midway through crisis I saw ‘Things To Come’.

The protagonist’s life was changed in the moment her husband announced it was over, that there was someone else. A few meagre words to change an existence and send a life into crisis. More and more went wrong yet the film seemed so calm. Her life was disintegrating around her like a mirror of my own existence. Love, death, job all at once. Her existence questioned.

We (not the relationship we but the friendship one) waited for the revenge, the meltdown, the affair to match the inner turmoil. But it never came. She got a cat, smoked a joint, cried alone. Were we cheated because of the lack of drama? I felt it at the time because I wanted the catharsis of watching someone else meltdown then make it again. Slowly I’ve realised that there is no instant fix but we quietly feel the pain in order to change.

Inside all this quiet death of a life is a sea of turmoil. ¬†But that’s just it, it’s on the inside and the world keeps on silently turning around us. We have moments of anger in which spiteful words are thrown to try to provoke the world into anger with us. We have reckless moments to feel alive to match the pain in our chests but the world still remains waiting calmly for us. Standing in the field watching the season change and the ghosts of my self harm race by I finally stopped and listened. The world was changing once again, partly dying and going to sleep before being reborn. I would stand and see the ghosts of others before me and those yet to be.

During this time we have the chance to be anything we want to be. We are stripped bare and our inner selves exposed. I’ve cried and stamped my feet, tried to dull the pain, let the blackness from the hurt slip from my tongue. I’ve tried to move this process on without stopping to breathe.

All this has quietly been sharpening my edge. Discovering a self that’s always been here and can thrive. The problem with a sharpened blade is the danger of using it. I need to find and practice new routines. For the first time they are for me.

So I’ve decided to keep it simple. To slowly take little steps one by one. In crisis I did a personality test and found out what I already knew:

To play with the first I’m trying to capture beauty however big or small.

Today we walked on the hills above Barcelona. The view was immense but my favourite thing was this tiny window with its beautiful succulents. Almost overshadowed by the might of the city, someone had taken the time to make it so pretty. My images when I play this game will be captured with the #seekingbeauty

We could all be a little kinder…

I came across this list earlier on Buzzfeed

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I love the fact it just asks us to spend a little time on ourselves before we hit crisis. I wish I could take my own advice. Slowly, slowly I’m changing my routine to include breathing and positivity. Todays tasks were to make candles, get the dogs back and watch Bake Off. Tick, tick and almost tick (it’s on in 10 minutes).

A lot of chronic illness comes with a spoonful of guilt. We let so many other areas of our lives slip so therefore believe we don’t deserve self care and kindness if we have cancelled a meeting or been late on an assignment. I know I’ve posted this before but it is so true: You can’t pour from an empty cup. Take care of yourself first.

So I’d be interested to know what you do to take care of yourself?

P.S. Today I’m grateful for:

  1. The garden and it’s ability to keep on growing no matter what
  2. Rose – In plant form, scent or lemonade.
  3. The crisis team who are keeping me afloat

 

 

 

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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