Brain Fog

When it is foggy outside, it clouds shapes, smudges edges and makes directing yourself difficult. Working out exactly where you were aiming, or what you are seeing, is tricky, and you somehow have to try and muddle through it all. When you get a break in the fog, it all becomes a bit clearer for a bit and you feel almost silly for being confused by a bit of vapor.

Now apply this sensation to your brain.

Trying to find words, forgetting things completely, getting things confused, things blurring together, the frustration of knowing there is SOMETHING you are supposed to know, but you simply don’t know it. You know?

Brain Fog is an acknowledged symptom of various health conditions, and is something that, whilst it can be explained to a degree, cannot be fully understood unless it has been experienced. It’s a very odd sensation, feeling like your brain is full of cotton wool, wrapped about all the parts you need to function.

And of course, because life simply works that way, this symptoms seems to like to present itself the most when you actually need to use your mind. Such as today, when on the phone to a doctor, and I forgot a key word, rendering a whole part of the conversation irrelevant. It came back to me three hours later.

So – if you know someone with brain fog as a symptom, be patient.

If you are someone with brain fog, be patient with yourself. If you can work out how to do so.

Random acts of kindness

Today, I was on the receiving end of a random act of kindness. It hadn’t been designed as such, it just was that. And with all the anger and fear and unhappiness in the world right now, it has felt like a hug right around my heart.

It started raining when we were on the way to the bus stop in town, and by the time we got there it was pouring. There is never any space for a wheelchair under the bus stops (WHY?) so I had wrapped my cardigan around Little Crafter and was trying not to shiver, when a woman came up to me and asked if I was okay, and would we like an umbrella. Thinking she had just meant to share with her until the bus, I said yes please. But then she handed it to Little Crafter to hold and went to get her bus. As it was she couldn’t get on, so we ended up on the same bus. Not only did she tell me to keep the umbrella to get me home but she gave me her jumper to wear on the bus to warm up.

I probably sounded like a babbling baboon  thanking her multiple times, but especially in days where the world seems frustratingly dark, an act of kindness makes so much difference. As it is, on a personal level, I had been in an awful mood, in huge amounts of pain and feeling very low. So to be treated so nicely, made all the more touching by her attitude of it not being an issue at all, has made me sure I can keep smiling for another day.

So, whilst I try my best to be kind anyway (unless someone is a twat, of course), this has reminded me that things can make people’s days much brighter with a literal – or figurative – umbrella.

Pass it on.

Tired.

I’m tired today. I’m tired of being in pain. I’m tired of the world being destroyed by hate. I’m tired of the stress of all the “what ifs” that float around. I’m tired of knowing there isn’t unlimited time, and yet no ability to use the time. I’m tired of crappy doctors. I’m tired of appointments. I’m tired of medications and their side effects, but knowing I can’t have any form of existence without them. I’m tired of not having choices. I’m tired of my demons. Goodness knows I’m tired of my brain. I’m tired of flashbacks and nightmares. I’m tired of running on empty. I’m tired of not being able to move, yet not being able to stay still. I’m tired of wanting to be better. I’m tired of being stuck. I’m tired of sleep never being refreashing. I’m tired of there being no peace. I’m tired of counting sheep. I’m tired of justifying myself.

Tired. 

Twas The Night Before Therapy – poem

Twas the night before therapy, and all through the rooms,

The squeakings and moving felt like giant balloons.

The balloons full of fear followed around

Until she was found curled in a ball on the ground.

The attempts to go to bed had been made with great care

But PTSD said “haha you’re not safe in there!

” what about the risks, the memories and fears?”

And although she scrunched up her eyes and covered her ears,

The thoughts hung like mist almost able to touch,

The flashbacks catching her breath in a rush.

Yes, on the night before therapy she came close to breaking,

Fully aware of the challenge in the road she was taking.

But she took her medication and squeezed her pillow tight,

Peaceful sleep to you all, and to all a good night. 

For the many, not the few

“Strong and stable”

We keep hearing these words, along with “in the national interest” repeated over and over again, almost as if there aren’t any other words she can think of saying. “ERM. Strong and stable! National interest. Stable. Strong… Much strong! Many interest. Stable. Strong. Strong, stable, stable, strong.” <nods and points> 

But how on earth are any of those things true? 

Taking lunches away from children, from the poorest children, the ones who have been driven to food bank meals because of Tory cuts – and let’s not even type out that full number because I’ll wear out the number keys on my keypad. (By the way, Simon Kirby hasn’t released his standing on this, whilst all other local major party representatives have made it clear they disagree with this. Looking at you Kirby. Though by his voting record this is hardly surprising.)

Bringing back fox hunting?? Is that really a) a priority, b) in the slightest something we should be focuing on, and c) IT’S 2017. TWENTY FUCKING SEVENTEEN. How on earth are we even still talking about whether it is okay to glam up, jump on a horse and allow dogs to chase and maul a wild animal to death?

Talking of which, even today we’re now cool with ivory hunting apparently. Have I walked right in to the shit parts of an Austen novel? 

That might be accurate seeing as the gap between rich and poor is feeling ever more pronounced. Tax cuts for the rich, and benefit cuts for the poor. Because the poor now is what used to be every day people. The working poor, we’re called now. 

In a Facebook rant, Mrs May sounded more like The Great Orange in D.C. with every sentence, almost as though she’d absorbed his every word on twitter as a guide book for How To Talk Like A Dictator. 

It really is a shame that as a woman, the two female PMs we’ve had to record have both been hell bent on destroying those who are not worthy. “First they came for the socialists” rings in my ears with every cut of the knife and I wonder just how many cuts it will take to hack away at the body of this country before we realize we’re bleeding all over the furniture of the world. 

You might not like Corbyn. But this is bigger than one man and one vote. This is our future, and with that cross on a piece of paper, we can either vote to help the many or the few. We can help those in need now or in the future. We can make sure education, healthcare, social care, emergency services, all have the funding they need. We can make sure Boris Johnson doesn’t singlehandedly destroy any foreign negotiations. We can prevent so much, preserve so much, protect so much. 

Deeds not words. 

For the many, not the few. 

Apprentice

Today’s daily prompt was the word “apprentice”. I felt drawn to it as, in so many ways, I feel like an apprentice, as I never feel quite competent enough to be sure I really am anything at all.

I feel like I’m still learning how to be a mother.
How to be a wife.
How to be visually impaired.
How to be a feminist.
How to write.
How to be chronically ill.

Bloody hell I could list another dozen things here and I don’t think I’d be finished. There’s so many things I’m still learning.

For fear of sounding like a hipster who has been drinking organic unicorn piss beer all day, I am an apprentice of the world.

There will be things I will never learn ‘enough’ at, because of things I cannot change. But… If I have reached my limit – MY limit, not that of someone else – am I still an apprentice, or am I simply ‘there’, at that place I will never get beyond? And does that make it enough to be sure of myself?

When do you finish being an apprentice at life? Do you get to a point when it all makes sense, or is it merely stumbling through forever, and getting better at locating the good coffee?

Maybe I am at least partially a hipster at heart, but I swear down anyone who serves my coffee in a chemistry set will soon find themselves covered in it.

 

via Daily Prompt: Apprentice

The dilapidated house on the corner

I’ve lived in this area all my life, and I’ve lived in this house with my family for two years now, so a fair amount of time, where you’d think I’d be familiar with everything.

Just on the corner of a turning I take frequently, there were, until recently, high fence panels, covered with ivy, winding and oddly romantic with its wildness. Every time I look that turning, or came up the other direction towards it, it would make me smile, as it looked so welcoming in an odd way. I love the wilds of nature, and ivy is something that fascinates me in how it will grow entirely without prompting, support or the foods that other plants demand. So these fence panels made me smile.

Then one day a few weeks ago I was coming up towards the ivy panels, when I suddenly saw they were gone. Ripped down completely on one side. The front panels, onto the main road, remained, but the side was gone. And for the first time I could see what was behind the panels.

A little old house stood there, dilapidated, crumbling but still upright, with a wonky chimney, chipped tiles, a broken window. The grounds around it have been prepared for demolition and then construction, with various stakes in the ground and different coloured tapes  between them. The ground was uneven and had the appearance of almost being churned, then thrown in different directions.

But the house! I fell in love with the house even more than the ivy panels. It was charming, beautiful in its ugliness, welcoming in its brokenness, a house full of memories and history that can almost be read on its collapsing walls. And I thought…. “I wish someone had torn down those panels sooner”.

Later on it came to me how much this likened to finally letting people in to see who you really are, to show them your ugliness, your vulnerability,  the failings in your health. People who only see your ivy covered panels only see your romantic perfection. Those who see your wonky chimney and broken tiles see you. They see who you are, the real you, and they might love you all the more for it.

Admitting to people how ill you really are is so painful and terrifying. But be proud of your house. Show it to people, and let them absorb your reality. You are a beautiful dilapidated house.

Keep crafting on

Finding a way to keep crafting through the dark moments and really broken days is vital to my mental health. I’m one of these arty types who can’t actually draw even when healthy, so inside I’m a frustrated artist who desperately needs an outlet. 

Today I’m having a bad flare up, with a lot of pain, spasms, and tremors BUT I need to keep crocheting or I will be grumpy as hell on top of all of that. 

I’m finishing off a blanket in Stylecraft Special DK made out of granny squares and stripes that I’ve used a selection of happy colours in. I get a bit of a seaside feel from the completed blanket, with different shades of sea, pebbles and with grass and seaweed scrambled in between. 

See – frustrated artist! 

It’s not long until I can see the final project and I’m excited. The excitement is over ruling the symptoms briefly, andt to me, that’s the magic of craft. 

Crafting a crafting space

When we last had to move, the only property we could find locally that had a garage for my wheelchair had three bedrooms. And so I am lucky enough to have a craft room. 
Until the last few months I confess it has been used mainly for craft storage and for the blocking of items. I owe my craft room an apology here because it is a wonderful room and shouldn’t have been neglected. 

Now however I have an armchair (I need a foot rest, am thinking either a storage cushion or one of those big circular poofs), the room is more organized than it was, I have a kettle and hot drink making area. In the process of organizing the room I have realised I’ve been stocking up preparing for a world washi tape shortage, but we’ll skip that point. 

My crafting space is now a crafting space. It is not just a room to shut the door on. It is cosy, it is comfy. It is safe. And when you feel cosy, comfy and safe, you are more likely to create beautiful things. Yes I am a hippie at heart, and I feel it is important to have a little safe area where your creativity can explode. Regardless of whether this is a room, a cushion, your side of the sofa, a place you go in your mind when you are crafting or the bag you carry your craft in, finding that crafting space – that is magical. 

It’s all a bit crap

There we go. That’s almost a post all alone. But frankly all things in life right now are a bit crap.

This isn’t a woe is me post. It’s a “hey, everything is shit for you right now? You’re not alone” post. 

So often, as chronically ill and disabled people, you hear good old lines like “isn’t it nice to see people like you out and about”, or “cheer up it might never happen!”, or “give us a smile love”. We’ll dismantle the patriarchy in another post but for now let’s just pretend that final one isn’t almost certainly coming from a middle aged man. 

It is not my duty to be okay. I owe you, as a stranger, nothing. Not my time, not my glance, and certainly not my energy. How dare you assume you should get it? Because hell knows I’ve worked to make sure I value myself above you, above what others see of me. How very dare you attempt to dismantle that work. 

Because when you ask me to be okay, you’re asking not because you care about me, but because it makes you more comfortable.  

Because disability is still scary and weird and making you squirm. 

So if I’m an “okay” disabled person, there’s nothing to worry about, is there? 

But you know  what? It’s all a bit shit. I’m in agony, I’m fatigued, I fell asleep sitting upright earlier I was so tired, my brain is foggy and I’m confused yet I’m too anxious and traumatized to sleep. 

So to those of you who are not okay right now: neither am I. You are not alone. I love you. 

To those of you who would like me to smile from my wheelchair for you: kindly go forth and multiply.