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. 

These are a few of my favourite yarns….

And if you didn’t sing that in your head, I’m judging you. 

I thought I’d just share a few of the yarns I love the most. Note: this is not a sponsored post in any way, literally just a list of yarns that I love, because I remember when I first started crocheting, all these thousands of yarns were a bit overwhelming. 

Stylecraft Special DK: Stylecraft Special is a firm favourite. It comes in a wonderful selection of colours (with three more joining the collection next month) so you can make almost anything. It’s 100% Acrylic, can go through the washing machine and tumble dryer, and is wonderfully soft. I have also only ever had one incident of a large portion of the yarn being unwound which, if you go though as much of it as I do, is a huge advantage, as some yarns are really bad for this. I also must say that the rest of the Stylecraft range I’ve used I’ve always been happy with, and I do like Stylecraft as a company; they do charity donations of yarn every year. Basically, if you’re after a good 100% acrylic DK, this is your yarn.

Caron Simply Soft: Caron Simply Soft (and Paints) is an Aran weight yarn (side note: how do you all say “aran”? Like Aaron or Iran or something completely different? Leave a comment and let me know!) that is wonderfully soft, and has this beautiful sheen to it. It’s not exactly sparkly, but is so smooth that the light plays on it so nicely. Again this is another 100% Acrylic. At first glance it seems a little pricey but the Simply Soft comes in pull skeins (another reason why I adore this yarn!) of 170g, so it makes sense to be a bit more expensive than some other aran acrylics. 

Cascade Ultra Pima & Cascade Ultra Pima Paints: If you need a beautiful 100% cotton yarn, this is where you need to be looking. The Paints collection is just breath taking. The colours in each colour way are just perfect. Looking at the individual colours in Pima, they are perfect. I just want to wrap myself up in all of these lovely shades and  be happy (disability – solved!). Both of these are 100g and 200m. Love. Them. All. 

King Cole Riot: ” Riot” is a great description of these yarns. Although “King Cole BOOM” would be accurate too. These acrylic wool blends (30% wool, 70% acrylic) are the most amazing colours. The names grab you as much as the colours; “The Deep”, ” Spark”, “Wicked”, ” Magic” to name just a few. These yarns are the type of yarns you could just put on display to look at if you didn’t want to work with them. Riot comes in DK and Chunky, and they’re both lovely to work with. 

Drops Big Delight: I love this yarn for scarves and cowls. This is a 100% wool, Aran yarn, that is physically as warm as the colours make you feel. The colour changes in this are beautifully phased, and it’s lovely to work with. Now I want to squish some of it…..

Patons Fab Big & Patons Fab Big Colour: Back to a 100% acrylic here, these 200g balls are super chunky and oh so squishy. The colours in the both Fab Big and Fab Big Colour are awesome and so fantastic when worked up. You need a snuggly ear warmer? This yarn. A warm cowl? This yarn. The quintessential winter pom pom hat? This. Yarn. 

And finally for this post….

Drops Merino Extra Fine: I love working with this DK yarn. Its 100% wool and comes in 50g balls, making it really good for portable projects. The balance of colours in the range between rich and muted is lovely, and all together they make for a wonderful pallet. It’s very soft, very warm and very snuggly. Brilliant for blanket squares, hats, fingerless gloves and so many other things (yes those are the three things I have made with it, you caught me). 

I consider myself very lucky to have been able to work with so many yarns in the time I’ve been crocheting and knitting, and these are just some of the yarns I’ve enjoyed working with. I really love the idea of passing around recommended yarns to each other via this, so please think about leaving your favourite yarn in a comment below!

The isolation of chronic illness

When you have the flu, you’re out of action for a week or two, then get back to normal. People asking “how are you feeling today?” can expect a gradual improvement of answers, right back to the point of being completely fine again. It’s a few weeks of extending sympathy, then the relationship shifts back to exactly how it is was. Maybe you’ll remember how ill you felt that time you had the flu, and your friends will nod in sympathy about those days or weeks you were out of action. 

But what if you never get better?

What if you never get to the point of being able to say you’re fine now?

What if, when someone asks how you are, all you can honestly say is “awful – just the same”?

It’s hard. Do you tell the truth, or do you lie? Should you be dishonest, and be someone who can’t be known to tell the truth, or do you answer as things really are, and become a dull and repetitive bore?

Because that’s how both options feel. 

It doesn’t feel like there is a right option – either way you’ll be pushing people away, either with lies or with the truth. 

And so even just this thought process becomes enough to isolate you from your friends, and you become more and more stressed just at the idea of being faced with these questions, to the point that being social in any way whatsoever becomes an anxiety button. 

In the end, your brain is working against you along with your body. It’s a bastard of an experience. 

Half way point

Half way through a blanket! 

I am one of those crafters who is guilty of always having multiple projects on the go. Normally there are four categories to these projects:

  1. Something portable to take around with me.
  2. Something I need to concentrate on.
  3. Something completely mindless but lovely to relax with. 
  4. Oh! Look! I need to do something with this yarn immediately!

This falls under category two, so I’m only working on when my brain, body and eyes are all cooperative. It’s coming along quite nicely, and I’m enjoying making it up as I go, but is involving a balance between planning and winging it. 

Although admittedly that is one of my favourite ways to work. 

With my limited vision I am reduced to what I can manage crochet wise. Granny square and granny stripe is something I can still manage, as I can crochet by feel. Because it’s in a cluster of three each time or a single stitch at the end, I can feel the stitches, and know if it’s right or not. I always use join as you go for the same reason. Because this project is a mixture of stripes and squares in different sizes it has involved waiting for good eye and brain days but nevertheless is enjoyable. There is something so comforting about the granny squares and stripes, it gives a sense of calm already to me, even before it’s completed (and I’m making it myself). 

This is how things are with this project tonight, I’d love to see how some of your WIPs are doing!

Four Little Words

I’ve posted quite a lot about the impact of my visual impairment and my physical health conditions. What I haven’t yet spoken openly about is my mental health.

Post Traumatic Stress Disorder.

Four little words.

One life in pieces.

There is this misconception that PTSD is a military-only illness, and although I want to give a hug of solidarity to any serving and veteran PTSD sufferers, that certainly isn’t the case. Whilst the statistics are not completely certain, it is estimated that 3 in 100 people screen positive for PTSD.

I must pause here to say that it is normal to struggle processing and recovering from a traumatic event. Any traumatic event can leave struggles, but the difference is that non PTSD individuals will recover with time. Thinking about the event, or coming across things that relate to the event, will gradually become less painful and upsetting. This is not to belittle any trauma that anyone has ever been though, and as above – hugs all around!

PTSD however, doesn’t get easier.

You live in a state of hyperarousal, ready to fight, flight or freeze at any given moment, waiting to go into that mode, ready to protect yourself through any means, because something is GOING TO HAPPEN, you ARE NOT SAFE, there is DANGER EVERYWHERE. That noise you just heard? Someone is waiting to hurt you. That person with their hand in their bag? They’re going to pull out a knife. That man looking at you? He wants to attack you GET OFF THE BUS NOW.

I sleep with my light on, because I cannot sleep properly at all. I wake up multiple times a night (aside from my pain) because of nightmares. Worse, I have flashbacks in my sleep and wake up screaming. Worse again, I have sleep paralysis, which added in to some of my traumas, is enough to make me want to vomit just thinking about it now.

Flashbacks are hard to describe. I think maybe people who have never had them picture them as like a cutscene in a movie, but it’s not that simple. With a cutscene, you know the main film has paused for it, where as with a flashback life doesn’t pause. Something triggers you (we’ll come back to triggers in a bit….), whether it’s something obvious to everyone, or something even you haven’t noticed but your PTSD has, be it a word, a location, a sight, smell, or anything else, and BANG – suddenly the world is upside down. You can’t breathe properly. Your head is pounding. Your mouth is dry. Your stomach has turned over. Your mind is so high pitched, it’s screaming. You want to curl up in a ball and hide, but at the same time you want to run, run, run, anywhere, anywhere that isn’t here, in this unsafe moment. You can’t think clearly. Your brain is throwing all those horrible thoughts, memories, traumas at you without pause. You can see the people who hurt you. You can hear the words, you can smell that moment, you can taste it, it’s under your skin, you are not clean. Keep looking around you because you need to see everything to make sure you’re safe, and you need to keep looking because your vision has decreased to tunnel vision with the stress on your body. You’re shaking. You can’t distract yourself from it. It sits there on top of you, pressing you down, heavy, as you try and try to function normally, to pretend that your brain isn’t trying to sabotage you. You are functioning through a fog, a mist that you have you push through to even move your limbs. You are numb, because your trauma has stripped you of feeling, and has left you instead with the inability to feel anything except terror, and fear or feelings at all, because that means being unsafe, and you are already unsafe, so how on earth could you open yourself up to anything more dangerous? You can’t concentrate. Places, people, objects, activities, smells, tastes and memories become out of bounds to keep yourself safe because there is no way you can keep yourself sane dealing with all of those dangerous things. Each time you come even close to them, your brain explodes. Your brain just can’t stay focused. With all of this going on, you become more irritable and snappy – fight or flight, flight or flight, fight or flight.

This isn’t the most articulate thing I’ve ever written, but I’m trying to explain why I’m sometimes so fuzzy.

PTSD is soul destroying. To even live with this condition is an achievement.

Now I need to hide for a bit.

My wheelchair is not here to entertain you

Not for the first time, yesterday someone decided to use my wheelchair as a point of entertainment rather than even stopping to consider what they were doing.

“Go on love, chase that lady’s wheels!”

I don’t even know where to begin with taking this to pieces.

I know what it’s like to be a frustrated mother to a child who is moving so much slower than you want them to be – hell, that’s the summary of about two years of parenting, isn’t it? – but you wouldn’t tell your child to chase after a car. Don’t tell them to chase after my wheels. My electric wheelchair is heavy, and cannot stop on the spot. I won’t mean to, but I will run people over if they stop in front of me.

On top of that if you’re behind me, and suggesting someone comes running along the back or sides of me, it sends me into a panic wondering if it is safe for me to move. Which just makes you selfish. My wheels get me out, they keep me moving, and to take that away from me, even if it’s on a psychological level rather than a practical one, is a hideous thing to do.

Unless you’ve been in an electric wheelchair there is no way you can understand the stress and anxiety side of using it. There are so many advantages of having a wheelchair, and it is a wonderful thing, but there is a huge responsibility in using one as well. You are using heavy, electric, six wheeled, mini car, which is steered, by the way, with a little stick. Trying to dodge people, dog poo, bikes that people are riding on the pavement, children, buggies, obstacles, litter, branches / sticks, dogs, bloody seagulls…. God I could go on. It’s never just as simple as getting in and going for a walk.

Then there’s making me a fascination. By pointing out to your child that I am something they could chase, you are making me odd, different, a spectacle. There’s nothing wrong with children being curious, that’s an entirely different thing. Singling me out from every other person in the area, turning me into a toy… You’re reducing me to my wheels and forgetting I am a human being. You saying this might have just been a silly moment that I doubt you even thought of again. To me it meant laying awake last night, feeling crap about myself, and then feeling worse because the comment had got to me. Because I should have a thicker skin by now, and normally I do. But this one hurt.

I’m not here to entertain you. I’m just trying to live my life.

Disabled Toilets

I have a Radar Key, which is a tool – in theory – to help make my life easier when out and about, giving me access to disabled toilets. But over the years I have found the reality is far from this theory.

Toilets being used as cupboards is a daily encounter. Toilets which have been crammed within the smallest legal space, which would make a direct transfer impossible. Toilets used as cloakrooms for staff, toilets where there are two individual doors to get through impossible to use in a chair without help, toilets ‘only’ for baby change despite the big blue wheelchair sticker. Negotiating disabled toilets is a nightmare.

I have a mental list of every good disabled friendly venue in town. Equally, I have one of every wheelchair friendly toilet. Just because something claims to have a disabled toilet doesn’t mean it’s actually usable.

And how on earth is this okay? The whole point of having a disabled toilet is so it can be used, not so it can be filled with highchairs (yes, disgusting, I know, but happens everywhere – parents, carry anti bac wipes with you. Ew.). If a restaurant decided to fill ‘healthy people’ toilets with boxes because “we are running low on space”, there would be an uproar. If a leisure center put its floor polisher in the gents because “our storage cupboard is full”, things would kick off. If the ladies cubicles were halved in size so you couldn’t turn around because “well that’s the legally required size”, complaints would be made.

So why do this to disabled individuals? Once again it’s almost as if society is sending a casual punishment. The reality is more brutal: people simply haven’t thought. People have been unable, even for a moment, to put their minds to consider what life might be life, if you’re not privileged with health and a functioning body.

Maybe it’s because of my family, but even before I was ill, I had empathy for those who were differently abled. My grandmother had a massive stroke before I was born, and was semi paralyzed, and unable to speak (apart from the words yes, no, tea, toast, and once – hilariously – “bastard”), so all my life, time with her gave me the reality that life isn’t perfect. I grew up finding different ways to communicate with her, and disability equipment such as wheelchairs, walking frames and commodes were simply every day, where as people just confronted with these might be unsure as how to process it at first. In growing up with this, and the matter of fact attitudes of my family regarding it, I was taught that disability is nothing more than a difference in the way that everyone is different from each other.

So maybe I had a better starting point than other people when it comes to understanding and empathizing, but that doesn’t really excuse things such as floor polishers in toilets. Because all of the examples I’ve given are genuine circumstances I’ve encountered. Real people have said and done these things. Real people have put active, concious thought into it and decided that boxes can go in the disabled toilet because there isn’t much space in the kitchens, and that because ‘not many disabled people come in here’ a disabled toilet makes a great cloak room, and that “high chairs take up a lot of room on the restaurant floor” so they should be stacked in a toilet. I mean really. How is this ever logical? Ever? People piss and shit in toilets. Why would you want to store anything in there other than toilet roll?