Basic chicken noodle soup

Ingredients
1 chicken breast, diced into small pieces
1 carrot, cut into small sticks
A few handfuls of spinach leaves, shredded
2-3 cloves of garlic, crushed
half an onion, finely chopped
750ml chicken stock
250ml veg stock
1/2 teaspoon of ground ginger
Fine egg noodles.

Fry the onion and garlic in a bit of oil or butter, add the diced chicken, carrots and ground ginger. Cook for a few more minutes, moving it all around occasionally. Add the stock and bring to the boil. Turn down to a lowish-moderate heat and simmer (a kind of vigorous simmer, I guess) for around 20 minutes.
Add the noodles and spinach, bring to the boil for another few minutes until the noodles are cooked and the spinach is nicely wilted. Serve it up and get stuck in.
A little bit of soy sauce, diced chilli, black pepper, different kinds of vegetables and any number of other bits and pieces can be added to it to change it up a bit, too!

If you want to make it stretch over days, just take out individual servings of the broth as and when you want it, boiling up each portion and adding the spinach and noodles.

It also goes well as just a broth soup with some bread and the chicken can be substituted for turkey.

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Spam, sweet pepper, and beans, fried in soy sauce.

Ingredients
1 bell pepper, cut into cubes
1 200g can of spam, cut into half centimetre cubes
1 tin of three bean salad, drained
1 cup of sweetcorn
3 eggs
Dash of milk
Rich, dark soy sauce (I use Lee Kum Kee’s Premium dark soy)
Olive oil

Whisk the egg and milk until blended, and stick in a microwave for a few minutes until resembling scrambled eggs. Set aside.

Fry the spam and bell pepper in a bit of olive oil until slightly browned. Add the beans, sweetcorn, and eggs with about a tablespoon of soy sauce (add more of less if you like, this is just my preference). Continue frying, stirring regularly, until the beans just start to take on a bit of colour and their shells begin to stiffen a little, and the egg starts to get a nice fried up crust.

Serve with rice, on toast, in a burrito, or however else you think you might like it. It works quite well in toasties with cheese, but then I have weird tastes and I’ll put almost anything with cheese, so don’t necessarily trust me on that.

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Spicy cajun bean and chickpea burgers

Ingredients
4 slices wholemeal or seeded bread, processed into breadcrumbs
3 tablespoons sunflower seeds, processed into crumbs (optional)
2 tins of three bean salad, drained
1 tin of chickpeas, drained
1 tin of kidney beans, drained
2 eggs

Spices
3 heaped teaspoons of cajun spice (I use ‘Butchers’ sundries’ cajun glaze)
2 heaped teaspoons of paprika
1/2 teaspoon of ground coriander
1/2 teaspoon of ground black pepper
2 teaspoons of hot chilli powder

Greaseproof paper (optional)

Mix the breadcrumbs and ground sunflower seeds together, divide it into
two and set half of it aside.

In a food processor blend the beans, chickpeas, eggs, and spices up until almost smooth, leaving just the odd little lump of bean and chickpea for texture (go for lumpier or completely smooth if you prefer, this is just my preference). Once you’ve got the mixture how you want, mix half the breadcrumbs/ground seeds into the mix.

Pour the remaining breadcrumb mix onto a large plate and, using your hands, take a golf ball-sized handful of bean mixture  and ball it up. Roll the ball in the breadcrumbs until covered and then squash it down a little into a burger shape and set it aside onto greaseproof paper (this prevents any issues of it sticking to plates or storage box, and allows you to pile them up easily).

Cook them under the grill on mid-high for around 7-8 minutes a side, or until as crisp as you want them to be.

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A plea to car and van drivers everywhere: Please stop making our lives harder.

I am a wheelchair user. Navigating the pavements of the local towns in the rural West Country can be an absolute nightmare at the best of times. Drop kerbs lacking where needed, uneven pavements, overgrown hedges, and steep hills. Many places here haven’t caught up with the idea that some of us can’t get up steps which means our access can be limited to certain routes. Given how difficult this makes life in this area for people like me, as well as people in scooters, powerchairs, blind people with guide dogs, or people with pushchairs, I humbly request that you don’t make life harder still by parking on pavements and blocking drop kerbs.

Alternative routes to where you are parking your cars is not always available. Without drop kerbs either side of you, going in the road is rarely an option open to us. On busy roads attempting it can put us at risk. Even if you’re doing it for ‘just a minute’, we don’t know how long you’re going to be there or where you are in order to ask. We also don’t know whether asking you to move your car is going to lead to an aggressive confrontation, as has happened to many of us.

For the past few months in trying to get out of the road where I live to get to the nearby bus stop I’ve found my route blocked by exactly this. Cars completely blocking the main pedestrian exit from an estate which is largely made up of elderly and disabled people. To get around these cars I have to ring someone to help me take another route which I cannot manage by myself, either being pushed over muddy grass or adding 20 minutes to what would be a 3 minute journey, subsequently missing the bus.

One of the drivers in question. Upon requesting he move, he has kindly stopped doing this.

Please, please consider people like me more before you do this. The stress and upset it can cause is far more than many people know.

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Sport and ‘ability’: Am I no longer disabled then?

[Cross-post from my Facebook]

I saw a photograph taken by @inkysloth which was posted to Twitter. It’s of a paralympics advert that has recently popped up in New Cross, and it’s one causing a stir among disability circles (and a lot of annoyance from others in disability sport).

Paralympics billboard by channel four. It shows two Paralympians doing quite normal things, with 'disability' written across it. Only the 'dis' part is crossed out.

I was going to leave this with just my comments elsewhere but it’s bugged me (as I know it has a lot of people).

I was what you could loosely call an athlete, and I’m working hard to get back there.. I’m good at what I do, swimming. I’m also pretty disabled. Does this mean I’m not disabled anymore? Have I ‘risen above it’ like this suggests Paralympians have?

Like fuck have I.

A lot of very intensive training, designed to work with or around things I’m affected by, went into getting me to that point. Some very good coaches gave their time and assistance in assessing how I could get it right and improve. In places my disabilities are even utilised. That’s how it works… It takes figuring out and incorporating. Finding what fits.
When I get out the pool I still walk like a toddler (at times I can walk), still use mobility aids, and still can’t do a lot physically. I don’t magically get fixed because I can do intensive not-drowning well.

Limbs don’t grow back, illnesses don’t always vanish, but there’s another point… Why is my athleticism considered less than someone able bodied? Why is any of ours? The whole narrative of ‘overcoming’ disability, becoming ‘as good’, is drenched in that message (see also the grimness of being ‘inspiring’)

I was a member of the disability club where I swim, and there were some amazing swimmers there. In their own right. WITH their disabilities, and with no need to compare them to people who are able bodied, or anyone else. Their achievements shouldn’t be judged by a physicality they do not share.

I’m fucking proud of what I’ve achieved in swimming, as a disabled person. When I left the disability club for masters (a group that doesn’t focus intensively on it/mostly non-disabled), my disabilities were still a part of what I was doing, still taken into account, and things I had to consider constantly while I swam (and it’s a lot of thinking)

Disability doesn’t stop because we achieve things, and to suggest it isn’t just insulting but erases a big part of us; of our lives, our experiences, and our training.

(And yes. I know ‘but they mean Paralympians, not you’, but ableness is used as a yardstick for us constantly. All of us. This doesn’t help. Those Paralympians are still disabled too, they still got to that point with their disabilities, and they wouldn’t be Paralympians otherwise)

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Thinking about getting a bunny? You may want to think again.

Every year around this time it’s the same thing. Easter Eggs begin to line the shelves of the supermarkets along with cute plush and chocolate rabbits, and with those little and hoppy toys many children begin to get ideas. “Dad, can we have a bunny?”

I see social media light up with photos of adorable little baby bunnies, of children holding them gleefully with pride, people talking of their children’s wishes and inklings of giving in and – one which makes me want to fucking scream, – pet stores displaying their package offers. For some time now I’ve wanted to try and write something which covers their needs in detail as well as the realities of keeping rabbits and the challenges they present.

I know people getting rabbits around Easter might not seem too ridiculous to most people beyond ‘you shouldn’t get a pet on a whim’, and that it seems silly to get frustrated at children happy with pets, but with rabbits comes extra layers of concern. Bunnies are one of the most misrepresented animals, and a hell of a lot of people go to get one without having a single clue what the hell they’re getting themselves into.

Bunnies aren’t cheap pets that you just buy a hutch for and then just have basic little costs going along with bags of bedding and feed. They have very complex needs that most, after the initial cuteness of them being tiny little kits wears off and they grow, just aren’t willing to fulfil. It leads to a lot of animals living short, unhealthy, and miserable lives where they’re neglected. What’s most concerning is that many people don’t even realise they’re doing this to them, or what a rabbit’s needs and lives are supposed to be like. Hell, I’ve seen a lot who don’t even understand their diet and exercise needs.

Rabbits are Britain’s most neglected pet, with ones bought in the run up to Easter commonly not making it past a year old. Part of this is considered to be down to mistreatment and part down to poor breeding, where pet stores (looking at you here, Pets at Home) stock up before Easter ready for the influx of customers. 1 year… That’s just 10% of a rabbit’s life expectancy, though I’ve seen many who perpetuate the idea they only live until 2 or 3 since that’s what a lot do end up surviving for. My husband and I can both think of and name over 10 people each who’ve had rabbits who, without doubt in hindsight, have had rabbits die far too young due to poor care.

Many people will even just let them out into the wild once their children no longer pay attention to them, which consigns them to death due to the amount of wild traits being bred out of them leading to them being incapable of surviving.

In 2011, it was estimated that of the roughly two million rabbits kept as pets in Britain, 75% of them suffered neglected and/or mistreatment.

That’s a whopping 1.5 MILLION rabbits being poorly kept, or to put it another way, every 3 out of 4 being consigned to misery. The article I have linked there is worth reading for an understanding of the sheer enormity of the problem beyond just those numbers alone. 60% were unaware that rabbits are social and intelligent creatures who need mental stimulation, which is the idea that leaves rabbits left alone in hutches with nothing to do , and around 75% of rabbits seen by vets were in poor health. Poor diet and exercise having led to overgrown and rotting teeth, overgrown claws impairing walking, and obesity. It’s a wonder some rabbits do make it to 2 years with the situations they’re kept in.

They also cost as much as a dog to keep beyond the initial costs, which are steep in themselves. Almost all of the hutches and cages that you’ll find in pet shops like Pets at Home and Jollyes are actually unsuitable to keep rabbits in, contrary to the ‘Ideal for rabbits!’ labels. The majority of rabbits in the UK are kept in housing that they really should not be in. A minimum size (6ft x 2ft x 2ft – RWAF) hutch will set you back a bare minimum of around £100 and, if you’re keeping it indoors (which is largely considered preferable), you’ll need to throw in a lot more to make it suitable for indoor living, as well as spending time and money rabbit proofing your home itself.

Inside or out, it needs to have an area that is closed off, allowing the little guy somewhere to hide from perceived threats and make things more comfortable. If you do end up keeping a rabbit outside, as many do, having a fully wire-sided hutch can lead to exposure in bad weather, to cold, or to predators. All of these, as with so many things with them, can be fatal.

A hutch alone is never, ever enough, either. Too many rabbits bought in the run up to Easter essentially live their entire lives beyond the first month in a hutch, alone. Exercise plays an enormously large part in keeping rabbits healthy. This is true of almost any animal, but with rabbits often being kept in unsuitable conditions it’s a massive black mark on our collective keeping of them. Obesity, gas, and slowing gut can come with poor diet but poor exercise too. They need the space and time to run around. If you keep them in a little box, or let them into a small run for a few hours a day they’re not going to be able to do the things they normally would to keep happy and healthy. To give it the space it needs to run about, leaving a rabbit in an open garden might sound quite idyllic, but you’d have to watch it the whole time to prevent predators from getting to your newly beloved pet. It would need to be a garden free of all plants that can kill them – which is a hefty list, make sure it’s completely secured to prevent escape and, if they have a penchant for burrowing, some way to stop them getting out like that too.

It’s all well and good thinking that a run with a wire base may help solve the issue but wire bases should be avoided where possible. In the young it can cause splayed feet and in all buns it puts them at risk of sore hocks which can lead to infection.

Runs that are large enough and have enclosed shelter are around the same price as a hutch, but you’ll also need to take into consideration that again, shelter to hide away and keep from the elements, and digging their way out may be an issue. The cheapest of runs tend not to be the most secure against predators either, with flimsy wire and easily broken frames.

I mention the need for shelter again because it’s really very important. If your rabbit encounters something like a fox and is stressed out enough by the experience, it can kill them. The animal doesn’t even have to do anything, terror felt by a rabbit is enough to trigger an extreme physical response. Not only is there a risk of shock in circumstances they take as being extreme, but there can be after effects like GI stasis or other gastric problems. Even if a rabbit seems okay after an encounter, it doesn’t necessarily mean they are. They have very sensitive digestive tracts and them slowing down or stopping can very easily and quickly turn deadly.

Exposure to water can be equally dangerous. Pet rabbits and wild rabbits are very different in some ways and coat is one. We like fancy rabbits to be soft, pleasing to touch and groom. In order to get their coats to that point of delicateness we love so much, we bred out what protects wild rabbits from the rain. They have oils coating their fur which stop water from sinking in, and making it easier to shake off. That in turn protects from the shock which can come from the cold of wet fur in open air, protects from the infection risk it can raise. Pet rabbits should not be got wet, and if it comes a point you have to bathe them it should only be under vets advice, and in most cases they will suggest dry options or damp rubbing before submersion.

It’s common for them to get smelly bums which will need some attention to prevent ill health and, in summer, fly strike. Fly strike being yet another thing that can kill you little bundle of floofy glee.

They need to be vaccinated annually. In their true, ‘bullshit. I’m not a prey animal, fuck that and fuck you, I’ll do what I want, thanks’ style, rabbits kind of fucked up Australia a bit after we introduced them. Our solution was to try and fuck them up right back by introducing viruses to kill them off. Rabbit haemorrhagic fever and myxomatosis, to be precise. Much like how we introduced rabbits and lost control of them, we fucked up the same way with the viruses. They’re still around today and still a major risk to rabbits in a variety of nations across the world. They are horrible viruses that lead to painful deaths, and myxie in particular is still very, very common in the UK. To risk not vaccinating is irresponsible.

They also need their teeth checked regularly (usually done when vaccines are as a kind of package deal) and if you’re unable to do it, their claws kept clipped down to a reasonable length to stop issues and discomfort arising.

They need a good bedding that is not cedar or pine. The majority of the bedding bought in pet shops gives off that tell-tale woody scent which is a big indicator that it’s not okay. That smell means phenols, which like in some other small animals can affect how their bodies process certain medications. Rabbits can get sick very quickly and if that happens it’s important their medications work. To buy hemp or other suitable bedding in bulk can keep costs down, buying smaller bales of suitable bedding can get pricey fast, but you then need somewhere to store it.

Did you know you should limit certain greens due to their high oxalic acid content?

The same is true of hay. They need lots of it. Every day they eat their own size in the stuff, it’s the main staple of their diet and they should never be without it. Dust extracted oxbow or meadow hay is the most common, and your options are to buy by the bale to save or buy small packages of 1-2kg at a time and pay 5 times as much in the long run.

They should have a mix of greens every day. 3 or more types, amount varying depending on size but being careful not to include too much of certain cabbages, avoiding certain lettuces, making sure it’s not too much of this too many days in a row, avoiding giving more than 1 thing a day containing this, only giving a tablespoons’ worth of that… I printed the list out and pinned it to the hutch to form the shopping lists for what to give them, and write it down every day so I don’t end up doing things like giving too many days of parsley or spinach, too much of the cabbages they’re allowed over a week and so on. I can’t bloody remember it and I’m not sure many can.

I recommend checking out the House Rabbit Society’s thorough list of what greens can be given and in what amounts per 0.5kg of weight. It’ll give you a good idea of why it can be confusing for some folks!

Vegetables, contrary to what a lot of people seem to think, aren’t things you give much of, or at least you shouldn’t. Throwing a whole carrot into a rabbit hutch is bloody stupid and should be avoided, it’s a myth they eat a lot of them that sprang from Bugs Bunny. A few mannerisms of Bugs came from a character in ‘It Happened One Night’.

From Wikipedia

The unpublished memoirs of animator Friz Freleng mention that this was one of his favorite films. It Happened One Night has a few interesting parallels with the cartoon character Bugs Bunny, who made his first appearance six years later, and who Freleng helped develop. In the film, a minor character, Oscar Shapely, continually calls the Gable character “Doc”, an imaginary character named “Bugs Dooley” is mentioned once in order to frighten Shapely, and there is also a scene in which Gable eats carrots while talking quickly with his mouth full, as Bugs does.

Their diet should be supplemented by a well balanced nugget mix, too. They shouldn’t be free fed but rather have a set amount daily to correspond with their size/weight. This shouldn’t be museli, which leaves them picking out their favourite parts and leaving others, meaning their nutrition suffers. Given a lot of museli isn’t exactly of the greatest quality already, that can lead to a lot of problems like obesity, gas, and the gut slowing down, much like with a lack of exercise.

Misrepresentation of character is another issue that comes up a lot.

You don’t really see them on TV mid-high kick, or stamping in the middle of the night so loudly that your neighbours complain about you doing DIY at 3am. You see these adorable cuddly little things either being held happily or munching on grass peacefully in a garden, as though their main state is docile and calm. Little angels that are easy to care for and absolutely would never sink their teeth into your hand or use your face as a launch pad in play time. They’re shown with children and are often assumed to be the kind of pet that’s ideal for them. A start along the road of responsibility that won’t be too much for them to handle and won’t cost a bomb.

I think I’ve already made it pretty fucking clear they’re complicated animals already, but the bit that amazes a lot of people the most is finding out the reality of living with them. The docile, calm, and child friendly myth that floats around couldn’t be further than the truth, and this next bit has already got a few reactions of ‘holy shit’, ‘what the fuck?’ and ‘you’ve got to be kidding’ in draft stage when I shared it. While appropriately, a lot of bunny enthusiasts and owners I know have been very ‘lmao yep’.

Bunnies are not child friendly. Rough handling doesn’t go over well with most animals, and some are far less tolerant of it than others. I would put bunnies well within the ‘least tolerant’ list of potential pets. If you handle them wrong, catch them in the wrong mood, or they just feel being a dick all of a sudden, you can find out they can do an incredible amount of damage.

I learned this the hard way. I’ve kept rabbits for around three years now, and within my first year I was bitten clean through a part of my hand. The pain of a rabbit bite is unbelievable and they tend to be deep. In breaking an altercation when introducing my two, moving one away from the other, I was kicked square in the chest and left with some surprisingly prominent scarring as a result. I narrowly avoided similar on my face from similar circumstances twice.

In my first year of bunny ownership I was injured far more, and more severely, than in over 10 years of living with a house full of fostered cats, pet ferrets, rats, and dogs. These aren’t all injuries from mistakes on my part. You will sometimes have to pick up a rabbit for whatever reason and they’re quick little fuckers with strong back legs. They can, and they will, catch you with a claw at some point.

If you catch them in the right mood, they’re still not a pet you can really pick up and cuddle. They’re unlikely to sit on your lap and affection will always be on their terms. All the bribery in the world will not necessarily work to ingratiate you with a bunny that really just doesn’t feel like being anywhere near you.

I’ll use my girl, First Sea Lord Tasty Soup, as an example on this one. She’s very anti-contact when anywhere near what she considers her domain. She’s the dominant of the two that I have, and when in the living room (they have a hutch and pen up one end, and get to use the rest as a run for a lot of the day/evening), all other beings are considered below her on the pecking order (the dogs, my husband, and myself included). She won’t just run away if upset about something, but rather she’ll get confrontational. If she wants to kick up shit about something, there’s nothing you’ll ever do to stop her.

Being part meat-breed, she has strong back legs which are great for making a lot of noise with stamps; something they do when annoyed, happy, know it upsets the dog and just spotted it go passed, or frankly just feel like it. She kicks, uses people as spring boards, nips at ankles, and no attempts at house training will stop her eating the furniture. She has a particular appetite for skirting board and carpeting.

I’ve been asked on more than one occasion why I keep her given her behaviour, which ranges from stamping all night to bullying our Staffordshire Bull Terrier, but the fact is it’s perfectly normal for a rabbit to be a volatile little wanker.

Don’t get me wrong, I love her to bits and it’s not all bad behaviours. She’s a grump but she can also be such a happy little thing, and taken away from that perceived area she’s got labelled as hers and hers alone, she’ll spend some periods of time cuddling up and being stroked. It doesn’t usually last long until she wants to go back to her home area, but it’s still time I can enjoy. Watching her binkying about the place is a great source of entertainment in itself and there’s a lot of games she’ll play with sticks, tubes, and other things.

She’s also got a vulnerable side in that she’s really scared of grass, which is perhaps the most bizarre thing I’ve ever seen in either of them, next to her regularly getting hay fever.

My other rabbit, Archduke Casserole, is the opposite. While he’ll also throw the occasional tantrum (I have not witnessed anything quite like The Great Tantrum of 2013. 6 hours of grumbling and stamping because I took a fucking strawberry plant away from him that he’d already eaten the majority of), he loves attention. Nothing is better to him than a good head or ear rub and he’ll follow you around until you give him the focus he’s desperate for. Take him away from their usual area and he’ll start looking for what he can destroy. Usually it ends up being your hands as you try to protect the soft furnishings and your clothes.

He has a mean streak too, though very different than Soup’s volatility.

I left him in the garden for a moment a few years ago while I let the dog in, and he unfortunately met a neighbour’s cat. The cat, incredibly, was the one that fared badly from the situation. The screams I heard that left me scared for his life turned out to be coming from this ginger lump of fur with rabbit teeth sunken into it and getting kicked in the head repeatedly. The force of a rabbit’s kick is so strong it can lead to them breaking their own spines, and having felt what that kind of force can be like with claws to boot, I can only imagine it must have smarted a bit to get that not just full on in the face, but repeatedly while he clung on and stopped it getting away. I broke them up and he chased it off up the garden. Once I was sure he was okay (even if the cat didn’t injure him, I’ve never seen first hand what stress and shock are like in rabbits and was understandably concerned given the risk they pose) I actually felt really bad for the cat.

He’s been very anti-cats since then. We had a problem with the cat belonging to a neighbour directly next to us not long after he’d got it: It kept getting the wrong house. During the summer it kept coming in through our window and we’d have to chase it off before he spotted it or we’d be the audience to a rather grunty war dance. We get to witness the same when there’s thunder, too.

Rabbits are incredible animals with amazing characters that can make you laugh until you cry, but they can definitely test you to the end of your patience. While I find them to be worth the strife, I do often find myself overwhelmed and, to keep them in a way that is fair and healthy for them, I doubt I would be able to manage if not for the help of my husband.

Please, if you’re considering getting a bunny, whether for Easter or any other time, do a lot of thinking and research before hand and be sure you’re prepared to take the cost, the volatility, the education, the space, and the time. No pet should be taken on lightly without knowing all that’s involved, but when it’s one where so many are taken on with such enormous misconceptions being rife, with their welfare suffering in such large numbers and to such a degree, it’s better to be absolutely certain what you’re getting yourself into. For them, and you.

If you’re not, then please, get a chocolate one instead.

 

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Spicy stuffed portobello mushroom

24717007692_7dcd004162_kStuffing
Slice of wholemeal seeded bread
1 tbsp sunflower seeds
1/2 tin borlotti beans
1/2 bell pepper (or a bunch of frozen sliced peppers, though it makes it wetter as i found out)
1/2 tsp paprika
1/2 tsp hot chilli powder (or in my case a smidge of extra hot)
Other ingredients
1 Portobello mushroom

Butter

Pre-heat oven to 200C24808607266_db6edc51d7_k

Using a food processor, blend up the stuffing ingredients until it’s all breadcrumbs and tiny chunks.

Melt some butter and brush it onto the outside of a portobello or other large mushroom. Place it onto an oven proof tray, and spoon the stuffing into it. Put it into the oven for 30-35 minutes.

I put this together in a rather ad hoc way rather than following any strict instructions, I didn’t think to write it down as I went along but this is the gist of it. If you butter a tray and spread the stuffing out about 1/2cm thick, baking it at 180C-ish for around 40-50 minutes, you get some lovely biscuity stuff that goes amazing with hummus.

 

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Mental health, poverty, and the devastating erosion of the social safety net.

Content note: This essay contains mentions of suicide.

There is a summary at the end of this post for anyone who struggles with the full text.

Today it’s come to light that Iain Duncan Smith, the Minister in charge of the Department of Work and Pensions (DWP), has decided not only to retest everyone on Employment and Support Allowance (ESA) and discount many of those with mental illnesses like depression and anxiety, they also plan to stop extreme psychological distress from being counted in Personal Independence Payments (PIP) assessments. (Source) (Source that ISN’T the Daily Mail)

This means people with psychological disorders that disrupt their lives to an enormous extent will not get the support they  may desperately need.

Rather typically of this Conservative government, they previously stated they would be cutting the qualifying distance in the PIP assessment in order to be able to afford the support for people with mental health conditions. This means a large amount of disabled people were kicked off the benefit for support that is now being withdrawn, apparently. It was a way to bring in more cuts and nothing more.

People are so scared about what their futures hold, and then going to be staring at the possibility of losing all support while still being incapable of working.

This is going to cost lives.

I have lost a lot of people in recent years, and I’m already seeing people discussing potential suicide if their reassessment comes up and it’s too much for them. I see a risk of a knock on effect which affects a wider group, those with both physical and mental health problems. I’m genuinely concerned that I may not make it through another application. Last time nearly killed me.

A long standing complaint of all of these changes is reassessment of people who have no hope of recovery. I personally have two conditions and neither are going to get any better. Over time my health will go downhill. I also have mental health problems which can be extreme at times. I need a lot of assistance throughout the day and will continue to, so what on earth is the point? Ah yes, just keep making changes and reduce the number on it regardless of the consequences.

I expect we’ll begin seeing a lot of appeals too. Appeals tend to cost the government an enormous amount. It’s worth remembering that at some points in this government’s term in power, enormous claims were made about 75% of people on ESA being fit to work, based on some dodgy statistics because Atos were just refusing everyone. A very large portion of that 75% actually had their decision overturned, at great expense of the state who had to pay Atos per person fit for work and the state for the cost of the appeals. Is it really worth the cost to both the state and the wellbeing of sick people? It’s costing a fortune.

At times it appears as though the only way you can get through an assessment and be treated with humanity is by pure luck. Some incredibly disabled people have been denied assistance in recent years and the government, far from attempting to ‘lift people out of a culture of blah dependency blah blah’ they’re placing them in poverty and risking homelessness.

A thing I find very disheartening, aside from the lives that will most certainly be lost as a result and impending poverty for so many, that we have so few helping to fight for us. We can’t easily organise, march, and petition. We get passing recognition but little besides that from so many activists. Just look at how long we’ve been fighting for a cumulative impact assessment, the WOW petition has taken a lot of people trying to bring attention to it for a very long time.

When we make noise, the most we can usually hope for is a Guardian article and lots of ‘if they’re so disabled, how are they marching?!’
We need people who are able to march with us, to petition with us, to get our voice heard and bring attention to the egregious behaviour of this government. Disability and mental health issues don’t make for sexy campaigns, there’s no way of making it palatable. Issues of disability are so ignored in this country, and most media attention we get is to criticise us.

The changes they’re making, I suspect a media line of mental illness being over diagnosed or a lot of implications that it’s a character flaw will emerge. Very much downplaying the severity of it, as well as making claim that those with mental illnesses are just getting more support after the £1bn ‘investment’ (it’s not new money, it’s just been moved) which is why the reduction. Alarm bells are ringing, loud and clear, and they sound fascist.

We’re all living in utter terror, always worried about that brown envelope coming through the door that could spell poverty/homelessness. People with mental health problems, rather than being able to focus on getting better in order to get back to work, are having to panic about impending judgement looming over them, threatening to throw their life into turmoil.

We already have to survive on so little. Financial stress can be devastating on it’s own. When you’re already having so many problems with health and living on a low income (as most on these benefits do), the idea of someone coming and taking your last lifeline away is terrifying. If they fail to take any evidence into account, as they often do, you can lose everything.

As I’ve stated above and will again: This will kill people.
The UN’s human rights investigation into our government cannot come soon enough. We signed up as a nation to the convention on the rights of persons with disabilities and we are currently doing everything we can to avoid any responsibility while withdrawing desperately needed support.

I pray they reconsider but sadly I don’t see it happening. Call me pessimistic but frankly I fear they see us as barely human, they won’t care.

Summary: Iain Duncan Smith plans to not only retest everyone on ESA (Employment and Support Allowance), but limit both ESA and PIP (Personal Independence Payment) when it comes to people who are debilitated by mental health problems. I am expecting stories to appear that denigrate the mentally ill, and I don’t expect there to be an enormous uproar with big protests, but rather a big news story for a day and then dies down to a simmer. It will go ahead, and people will die because of it, being unable to work and having no access to disability support.

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Welcome to the Bendy Zebra Club!

Many of the people who follow me on twitter and on here will know that I’m not in the best of health. What many don’t know is in what way, what’s causing my problems and quite how much they have impacted my life. You see I have both syringomyelia and EDS, and best guess is that the latter may be responsible for the former though “who knows?!” as my neurologist once said. In truth I’ve been wanting to write more about them for some time, syringomyelia in particular is incredibly rare, affecting (according to 1966 study) 8.4 out of 100,000 people. The form I have affects less than one percent of cases. EDS is nowhere near as rare, but it is still very uncommon, or at least not commonly diagnosed.

Mild extension of wrist and elbow

A lot of people have great difficulty when it comes to getting a diagnosis, and I am no different in that regard. Many GPs don’t recognise the symptoms, and even a lot of rheumatologists are not well versed in it. This makes it being discovered as a cause for the problems a person may be having very difficult indeed, and many people that I know with the condition have had to do their own research and presenting it to a GP in order to get anywhere. This of course brings up it’s own issues, both surrounding self diagnosis and the potential for frustration if a GP still refuses to refer.

I’ve heard countless tales, and have my own, surrounding all of these problems. I also know a good number of people going through it right now.

Hyperextension of thumb and wrist

It’s not been a great day today; from the moment I woke up this morning I’ve been in considerable pain and oramorph doesn’t seem to be touching it; such is typical of EDS. With hyperflexible bodies and predisposition for frequent, if not constant dislocations comes a pain that few painkillers can do anything to dull. As neat a party trick as it is, a ‘normal’ body is certainly something I wish I had.
EDS is a syndrome caused by having collagen which didn’t form quite right, and I like many other people with this form of Ehlers, also have a natural and bizarre high tolerance to opiates, a difficult time with NSAIDs, and no other real choices.
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Fingers hyperextending at the knuckle joint

The photographs in this post are of me taken a little over a year ago. They’re some examples of hyperflexibility can come with EDS type 3, or joint hypermobility syndrome (I should be clear here, so as to not leave people worrying; you can have joint hypermobility without issues such as pain, dislocations, skin issues or other stuff. So if you recognise these examples in yourself it’s not necessarily indicative of EDS). Other things included in type 3 which are or have been present in my case are:

  • spontaneous or heavy bruising,
  • odd ‘scars’ on the skin which look like – but aren’t – stretch marks,
  • patches of skin which is velvety soft,
  • folds in the upper eyelids and at times under the eye
  • Scars leaving behind a silvery sheen and can take a long time to form,
  • cuts, while healing, can be very discoloured
  • Raynaud’s syndrome (incl. Livedo reticularis)
  • high palate of the mouth, causing small jaws and overcrowding of the teeth and migration
  • advanced early onset periodontitis, jaw infections and loose teeth
  • splaying of the toes
  • ankle supination or pronation
  • fragile/thin/translucent skin
  • A whole bunch of other shit

I have type 3, hypermobile type, and also thrown in for extra fun is some type 4 crossovers. I’ve had 8 teeth removed, with the remainder wired in place, orthotics to prevent ankles supinating, wrist supports, a bite riser to alleviate night-time jaw dislocations, I’m an expert at putting my own joints into place after dislocations, I’m covered in strange scars and marks that don’t necessarily have a cause, much of the skin on my body is not only bizarrely soft but virtually see-through.

Type 4, which I have very, very mild symptoms of, is commonly called ‘bleeder’ type. I bleed, oh do I bleed. I don’t have to apply pressure or even move to find myself covered in bruises, if I’m cut it takes a very long time to clot, and while I was fortunate enough to miss out on cardiac issues, I unfortunately got the menstrual ones.

I had to fight very hard to get a diagnosis at all. I’ve known for a few years I had it. One of my parents does, 2 of my siblings do, other relatives do.. It’s not rocket science to put the pieces together and finding they fit.

When the pain started to get beyond what I could handle I was around 9-10 years old. My knees had been ‘popping’ [subluxing] and I’d been seeing specialists for it at a local hospital, told that it was down to having ‘flat feet’ and ‘inverted hips’. By the age of 12 I was investigated for rheumatoid arthritis, only to have the specialist laugh when he saw me move and say ‘nope’ and suggest fibromyalgia. After a lot of fighting to get an answer, in the end I was misdiagnosed with fibromyalgia and M.E. Misdiagnoses that still get brought up with doctors today and it has impacted my care at times. There’s a lot of controversy surrounding them as diagnoses within the medical community still, and despite not being present they are still dredged up for reasons I cannot fathom.
I’m now 27 years old, my diagnosis was confirmed late last year by a rheumatologist trained by the incredible Prof G, the UK’s only EDS specialist. To get that appointment with her has taken me almost 3 years, and it took me listing my symptoms, looking at my scars, EDS lines, skin, eyelids and a few examples of extreme hyperflexibility for her to sign off on it. It’s been 16 years of fights and wrong turns, poor decisions, and most of all self-doubt. I’d asked several GPs, over and over again, to allow me to see a specialist only to be turned down. “Well they’d only offer physio and pain relief..” completely missing the fact that illnesses which are an enormous part of your life, which impact every choice you make out of self-preservation and manageability, are a part of who you are. The uncertainty in itself was a struggle. I’m a bendy, it’s a part of who I am and it will forever impact my decisions. There were also the cardiac investigations which may not have happened were I not to push, access to hydrotherapy and pain clinic, ongoing access to physiotherapy instead of a few terms of it.

It’s been a long road and a stressful one, and like so many others I am so relieved to discover that, despite all my self doubt, I wasn’t wrong. The pain, the dislocations, it’s all there and all related. It also ties in greatly with my neuro issues and could potentially give answers for Dave in future, but without the diagnosis it’s unlikely to have a correlation noted or taken seriously.

Splayed toes and translucent skin

Regardless of the state of my body and all it puts me through, I will admit that I’m proud of myself. No longer distracted by so much, and a fight in regards to health is so, so much, I’m able to look back and see all I’ve accomplished with it being there and affecting so much

I also feel incredibly lucky that, while going through a struggle to diagnosis and found out exactly what is wrong with my joints and body, as well as through the challenges of daily life, I have met such an incredible group of people. Other bendies, other activists, other people just like me. People who can joke about dislocations, laugh about reactions people give or pain or wheelchairs. Who I can moan about ableism to and they can share the same with me. It’s my journey with EDS, in part, which has caused me to meet some truly inspiring individuals who I gratefully call friends. And I will forever be thankful that I’ve had that chance to meet and share with them.

Edit: A note from a most wonderful sloth on why it’s bendy zebras

Because in the medical world, they are taught that if they hear clacking hoofs, they should expect it to be a horse. But occasionally, it’s not what they expected and it’s a zebra – Basically a rarity. So anyone with a rare condition is considered to be a zebra. The EDS community have taken on the zebra as a mascot as a result.

Revised 13/01/2016

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Explaining Dave; My journey with Syringomyelia

As many people who read my blog will already be aware, I have a number of health conditions. A lot of my activism is dedicated to trying to find a voice for people with disabilities, chronic illness, and mental health problems, as a result I spend a lot of time speaking of my own experience of ill health, physical and mental. What some may not know is just how rare one these health conditions is, or even what it is. Given that I find myself having to explain it to doctors from time to time, it’s no real surprise that the general population doesn’t know of it. In this post I would like to introduce you to my syrinx, who I’ve named Dave, and my journey through onset of symptoms, diagnosis, and learning to accept him as a part of my life.

For some time I’ve been meaning to write up some things on this, namely explaining it in more depth and also my experience of diagnosis, which I’ve wanted to write for myself more than anyone else. Even years later, I find the memory of it quite frustrating and I’d like to get it down.

I have “idiopathic” syringomyelia, a cyst formed of spinal fluid in the centre of my spinal cord, blocking some of the nerves response my legs and left side of my abdomen..

When I was 18 years of age, in the October, I woke up at around 8am with pins and needles in my left foot. Thinking I just slept funny, and having suffered sensory and mobility problems in my legs in the past, I thought nothing of it and carried on with the day.
As time went on the pain got not only stronger, but began to present in my right foot and leg, and spread further up my left. By the evening a lot of the pins and needles and sharp pains had gone, and instead I was left with numbness, as though my legs had gone to sleep. In the space of a day I had lost all but a very dull sensation when touching my legs.

Having had similar (though nowhere near the same degree) in the past I didn’t think to go to A&E, it had been investigated thoroughly and the result was considered to be within normal parameters. I had not yet been diagnosed with Ehlers-Danlos Syndrome and a year previously had found, my spinal canal was “slightly enlarged”. Any and all neurological symptoms were, as many others with syringomyelia and EDS find themselves being told, ‘psychosomatic’.

I made an appointment to see my GP, a man I’d only recently begun to see. After skimming through my notes he announced that ‘unless you have broken your back, which is highly unlikely as you’re here, it’s probably all in your head’. He prescribed me tramadol and prozac and sent me home.
Upset and frustrated I left and didn’t go back until a few weeks later, when the sensation had deteriorated further and I could no longer stand, even with walking aids. I went to another GP and asked for the chance to see a neurologist; something was deeply wrong.

Months later I got my chance, seeing a well regarded neurologist at the nearby hospital. He told me not to pin my hopes on anything being found after previous investigations had come to nothing. I was told I’d have a full spine MRI as well as a visit to neurophysiology to check and see what signals were going through. Frustrated and far from hopeful of finding answers I went home and waited.

The first to come through was neurophysio. They use that blue tacky substance to stick electrodes to your head, a part of the process I’ve always found quite uncomfortable as they tend to push down quite hard. I’ve quite a fragile scalp and one caused a small laceration under the pressure that was applied. The doctor wired me up and had my lie down, he told me he’d send small shocks into my ankles, let me feel what it would be like on my hands. He told me he’d be able to have a look on screen to see what was ‘going on inside that thing in your head’. The shock to my hand was quite painful, and not having had such a thing tested on my range of feeling in my legs I expected it to be no different. I lied back and waited. 20 minutes later I was roused from the sleep I’d fallen into.

Next up, the MRI. It was the same machine in the hospital that I’d been in before. I’d gone through it all 3 times already so turned up prepared. I had my own blanket and some Winnie the Pooh PJs to change into. (Last time they couldn’t find a blanket and it was so cold my hands and legs were blue by the end of it. Apparently it was quite an odd thing to think of, but as anyone with EDS will tell you, the cold can really, really hurt.) I was slowly guided into the machine after going through the tick box questionnaire, making sure nothing would heat up or rip out of my body were it to go ahead. The same familiar mark, like a line of pencil, was there at the top of the tube, and as with every MRI I’ve had since, I stared at it while the whirs and bangs and zonks droned on around me. Done and over with, I went home.

Two days later, having stayed up late the night before with my now husband, talking about frustrations and expectations, I had a lie in. I was woken at just before 9 by my phone going off. It was the neurology department notifying me of a cancellation the very next morning, asking if it would be possible for me to come in for the results of my MRI. For some reason alarm bells didn’t go off, though I did think it was quite bizarre to have the MRIs ready so quickly, let alone them having been seen by the neurologist. Normally the wait is upwards of 6 weeks before you hear anything. But, it was a chance to get it all out of the way and the frustrations as over with as they could be. Nothing could have prepared me for that appointment.

I wheeled into the office of a grinning neurologist. He was incredibly excitable, speaking so quickly I could hardly keep up with him. He did a quick examination to re-check my reflexes and sensation before I moved back to the wheelie bin  (my nickname for my chair, cue ‘i’m trash’ joke) to hear his verdict. “Very rare”, “very uncommon”,  “quite remarkable” and then came “surgery”. He was beaming at his discovery and I just blanked out.

Surgery. Neurosurgeon. Spinal surgery. It didn’t properly hit until I got home, stuck between my relief and pure fear. Relief at feeling I finally had an answer (incomplete as it turned out to be), and some way to get better, but then was the idea of my flesh being cut open.

Much of the next few months was spent crying and worrying about what was to come, waiting for news from the neurosciences department in the Bristol hospital I would be going to, from the neurosurgeon who would be taking my case. A few months passed before it arrived and I spent the journey to see him distracted. I was going through a kind of high, manic phase and, now, I remember very little of it. I remember being told there were only four cases, if they counted mine, that they’d treated. I remember being told they would ‘fillet’ me, cutting ‘up here by your brain, right down to here by your bum, open you up and have a poke around to see what’s going on’.

Fortunately or unfortunately, depending on how you look at it, I wasn’t and still am not eligible for surgery. As much as anything it’s because I’m too much of an unknown. Other cases he was familiar with, he pointed out, with their ‘published articles’, all had a cause. They had tethering of the filum terminale, Chiari Malformation, cancer, arahnoid webbing. Mine has nothing. It’s just there and they don’t know why. A syrinx with no cause.

Syringomyelia is normally caused by some kind of blockage of the spinal fluid flow. The pressure spiking, or simply having nowhere to go, can cause it to leak into the centre of the spinal cord. A patch of the cord could be the path of least resistance in the face of a blockage, and so in it goes, forming into a syrinx in the usually pin-width central canal.

The images below are taken from some of my MRIs over the years (of which I lost count, I’ve had so many). If you look closely you will see in them a small, unchanging, unmoving circle. In the centre of it is a white dot which gets larger and smaller, and around it is a dark grey area. The white dot, that’s Dave, that’s the syrinx, the cause of some of my symptoms; not all, I should add. It’s complicated by the Ehlers Danlos Syndrome which can also have some neurological symptoms, and the suspicion of occult tethering; where the filum terminale, a little ligament at the base of the spinal cord which shouldn’t but does pull the cord taught for some and is not uncommon in EDS.. The dark grey area around that growing and shrinking circle that is Dave, is my spinal cord. Dave should not be there, that central canal is not supposed to be anywhere near as visible, if at all.

Turning it into a car analogy, Dave is the twat in a transit van who keeps breaking, swerving and switching lanes without looking on the M25, making you 3 hours late for work because he’s left a few crashes in his wake.

These are poor examples at showing his size, though I don’t have the better and more recent MRIs which show him clearer and larger. From it’s point in the centre of the cord, the syrinx puts pressure on all around it. Instead of being squeezed from the outside, it’s from within, stretching the fibres and sending out and receiving the wrong signals from around the body in relation to the area of the cord affected. It’s fucking up the nervous system from the very inside of it. And for me, no one’s certain why.

According to a study from 1966, before MRI, it was estimated that the prevalence of syringomyelia in the population is 8.4 out of every 100,000. Idiopathic syringomyelia makes up less than 1% of cases out of that 8.4.
For me, my syrinx, Dave (and speculatively symptoms from other EDS related complications, according to the doc) had left me an incomplete paraplegic. That is, I have no sensation from the hip down on my left side, and from around level with my breast on my right side. Between the two sides is very mixed, but I usually say it’s ‘waist down’ for ease.

Dave limited my mobility which is incredibly tiring both physically and mentally. In order to move my legs I have to consciously think about what it is I’m doing. Am I having to move my right or my left? How do I make my foot go there, or move like that? The easiest way to move my legs is, aptly, also one of the most taxing. I tense all the muscles during the movement, for some reason it helps focus and then I am less likely to fall. To walk in a way that looks ‘normal’ I think ‘hip, raise knee, lift foot, place foot while moving from hip and knee, hyperextend knee, push weight forward, raise from hip…’ and so on.

You know the line from Kill Bill? “Wiggle your big toe”? That’s been quite an influence in my life because goddamn you would not believe how hard it it. Not just moving toes, but moving them in a particular way. To wiggle one toe, or even all of them, without them just spreading out or curling up and not releasing. I’ve had hours of fun just sat on the bed trying to work out what I have to do to move them how I want.

Anyone who’s ever thought about how nerves work probably knows this isn’t the extent of it. When the spinal cord itself is affected, any number of things could happen. For me, those things include incontinence, feeling like I’m being burned (imagine touching a red hot ember, that pain within the first moments of touching it), aching, stabbing, the feeling of bugs crawling around under the skin that’s so vivid you find yourself looking for them. Electric shocks, tremors, muscles tensing and cramping, feelings of cold or heat. There’s very little that it can’t make you feel. One of the hardest realisations I’ve had to get to grips with is that this may not be the worst of it.

Syringomyelia, as mentioned above, often has a cause. Treating the cause is what usually brings about an improvement (if any) with the size of a syrinx. It’s not something they can go into and just suck out, its right in the centre of the cord. There are options such as putting in a shunt to prevent pressure from rising in the cerebral spinal fluif, but even that does not have great success rates. What is considered ‘success’ with a shunt varies widely, too. For a lot of people who have had shunts installed and their syrinx reduced in size as a result, many have suffered a change in symptoms that they wouldn’t exactly describe as an improvement. Increased pain is among the top problems which I see a startling number of people among syringomyelia/CM noting, yet they are considered a success because the syrinx itself has reduced.

Dave, my syrinx, he is presently (and has been for a number of years now) around 30cm long and 4.6-4.7mm wide at his widest point. One thing that doctors do not like pointing out, and so have skirted it almost every time I’ve asked – almost – is what the future is likely to hold. The reality is that it’s not necessarily going to be bright. Because of the nature of an idiopathic syrinx, it being so hard to treat and the reality of ‘success’ rates, it really is an unknown. In American literature it’s largely considered to be a progressive problem, wherein the syrinx grows in length or width, or in some cases another syrinx appears somewhere else along the cord (in some of my MRIs you can see an enlargement in the canal in my c-spine about 3cm long), and mobility and sensation are further decreased as a result.

For me it’s a balance of what I’m able to do now and my quality of life, vs the risks of a shunt and the potential for success. This decision is out of my hands at present, though given the balance as it is right now I wouldn’t consider surgery an option anyway, particularly after the surgeon’s ideas of an expedition of sorts. It’s always going to be difficult, and the future will most likely be more so.

What I cling to with dear life is the comfort that I am human. While I do suffer from quite severe depressive phases which may give me incredibly negative thoughts about it, I often find comfort in knowing that we are very adaptive creatures, we are creatures who find ways around things.

I have learned to walk again. I can wiggle my big toe if I try really hard. Despite the problems I developed with the EDS I can just about hold a pen, or a cup of tea. These are things that, thinking back to the times where I tried so hard to relearn or adapt and they seemed impossible, I managed.

I’ve often found myself asking the question ‘why did this happen?’, but the answer is as simple as the question, and given what I write above, is also quite a positive thing if looked at in the right light. It’s because I’m human. Bodies are incredible things; they can perform incredible feats and possess remarkable strength. They can also be so incredibly fragile and have the power to mess you up quite royally.

Initially written for Rare Disease Day (28/02/2014) revise 13/02/2016
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