Saltfreeandsingle
You can tear Wikipedia health pages away from my sick, chronically ill hands

In the days when I used to visit my GP in the hope of getting actual medical care, I occasionally was asked: “Have you been going on the Internet?”

Of course I’d been going on the internet, I used Google just now to work out the quickest way to get here, but I knew they meant, ‘have you been researching your symptoms online?’. I also knew that if I had been researching my symptoms online, this made me a stupid neurotic bitch whose malaises could probably all be cured if I just spent more time skipping around in parks and less time googling the symptoms of life limiting illnesses. 

Twice though, I lied and said no, and it completely backfired. My audiologist told me there was heaps of information on the Internet about Meniere’s disease and I should probably use my resources to my best advantage and get acquainted with my illness, and why hadn’t I done this already? One GP told me that she didn’t know anything about sleep paralysis, but the Internet probably did (she was right), and why hadn’t I done any of my own research? It could have saved an appointment that could have been given to somebody else.

Now that I only visit GPs on an absolutely need to know I won’t die of sepsis this weekend basis, I no longer have these unenjoyable exchanges. Enter friends and family and acquaintances who have issues with my use of the Internet to research my health concerns. Their bullshit is normally a variation on the following themes:

  1. "I don’t think it’s a good idea to just sit here scaring yourself on the Internet."
  2. "I’m sure it would be more useful if you actually just went to the doctor."
  3. "This isn’t good for you."
  4. "If you google your symptoms you’ll just end up thinking you have cancer."

Firstly, do I look scared? And do you know what scares me more than a list of things my symptoms could mean? The fact that my general practitioners let me go 17 years without a coeliac disease diagnosis, and didn’t seem to care that I had non stop menstruation, severe anaemia, soft teeth and unbearable constant pain. The fact that doctor’s appointments are 10 minutes and a doctor can spend up to 7 of those telling you not to research your symptoms online. The fact that a lot of people find out they are in the last stages of a serious illness by the time a medical practitioner takes an interest in it. 

Secondly, the most useful thing a general practitioner has ever done for me is to refer me to another doctor. Seriously. That’s about as helpful as it can get for me. I guess if I had a foot fungus that really wouldn’t quit, I might consider going to a GP for it after I had exhausted other avenues of self care, but that’s about it. I generally find that doctors waste my time a lot more than they help me. 

Thirdly, I’ll decide what’s fucking good for me. My body, my life, etc. If you don’t want to see me looking up my symptoms on the internet, look away. Close your eyes. Do something other than spy on my browser. 

Fourthly, lots of people do have cancer. Many people have been put off visiting their doctors because of bad experiences in the past and might not seek medical care for symptoms such as tiredness, unexplained malaise, or inconsequential weight loss, which might very well be symptoms of cancer. Seeing that their symptoms could be something serious on a web source that they trust could make it easier for those people to visit the doctor, which might end up in an earlier diagnosis. Cancer is not some imaginary illness you can use to mock people who get worried because they have a dry spot of skin on their arm that just won’t seem to get moisturised. And the person you are mocking just might have cancer. So let them google. You don’t own the Internet. 

Did Not Attend

Every time I don’t attend an NHS appointment, the NHS send me a shaming letter, detailing how much DNAs (Do Not Attends) cost the NHS every year. Fair enough. That was a valuable 8 minute appointment that could have been given to somebody else so they could have been patronised, pathologised, ignored and sent away by my sub standard GP. I deserve the letter.

But it’s unfortunate that there is no standard letter that patients can send to their GPs for wasting their time. And costing them money. Here’s a brief list, off the top of my head, of people I would like to send that letter to:

  • The consultant who looked at my broken arm when I was 10 in A and E and said, “Gosh, your bones are a bit brittle,” and proceeded to do fuck all about it. If you had ordered a few tests, I might have got diagnosed with coeliac disease at age 10 rather than at age 17, saving me 7 years of pain and an expensive appointment with a private nutritionist who prompted me to ask for the coeliac test on the NHS.
  • The GP who said, “Gosh that’s a bit weird,” when I told her that I fall asleep all the time. Thanks for your brilliant analysis, but next time, remember that you’ve gone to medical school and say something - anything - more profound than that.
  • The GP who told me that as I have Meniere’s disease, all dizziness - any dizziness - is due to Meniere’s disease and can NOT EVER be a symptom of other things. It is COMPLETELY IMPOSSIBLE for Meniere’s sufferers to ever experience any other kind of dizziness ever until the end of time. You cost me £4 in a charity shop buying a second hand blood pressure monitor and hours on the internet researching hypotension. That’s valuable time I could have spent becoming an entrepreneur you bumhole. 
  • The audiologist I saw when I was 16 who told me that my hearing was fine (it wasn’t), and that any mild hearing loss that I did experience (so it’s fine but also possible that I’m experiencing mild hearing loss? How does that work exactly) was probably due to ‘hayfever’. Thanks a lot. I had to wait another 10 years before I got my Meniere’s diagnosis. 
  • The urologist who spent about 25 minutes talking to me about Sexual Intercourse: how Sexual Intercourse was probably the cause of my recurrent kidney pain, how I could prevent further kidney issues by urinating before and after Sexual Intercourse, by taking a prophylactic antibiotic before Sexual Intercourse and having a shower after Sexual Intercourse even though I explained right at the beginning that I don’t do Sexual Intercourse and haven’t done for some years. Your obsession with Sexual Intercourse cost 25 minutes of valuable A and E time when you could have been giving other patients who do have Sexual Intercourse this patronising and insulting lecture and I could have been working on my career as an entrepreneur. 
  • The GP I saw when I was 16 with severe intermenstrual bleeding and cramps who told me that, “It’s common for some young ladies to have irregular periods,” and was so obviously embarrassed that I had said the word ‘menstruation’ that he tried to get me out of the door as quickly as possible with a promise of an appointment with a ‘Lady Doctor’ if the bleeding continued for another 6 months. In what world do you live, GP, when Lady Doctor means an actual thing, and where you think it’s perfectly okay for someone to bleed continuously for a whole year without anyone so much as testing them for anaemia (which I had. Thank you Lady Doctor for diagnosing that)? You owe me 6 bottles of Floradix and some kind of medal for not putting you in a museum on the spot.
  • The GP who told me that they would ring me (there is no other way to get hold of patients, we don’t care if you have a hearing impairment) if anything showed on my test results and proceeded to not ring me when something showed on my test results. Thanks. 
  • The countless doctors that have lost my friend’s test results and also proceeded to fail to ring them when they found something worrying on their test results. You are all wankers. 

 

I made a letter we can all send out to clinicians who waste our time based on the DNA letter. 

Dear (clinician’s name),

Re: Wasting My Time

We have noted that you wasted my time on (date and time of appointments).

Having reviewed your record it can be seen that this is not an isolated incident and that over the last (number of months) you have wasted my time (number) different times. In each of these cases there has been no attempt to apologise for this behaviour.

(Insert name here) has a lot of things to doIf a clinician wastes (insert name here)’s time, (WMT) and they do not receive prior notification of the time wastage, (insert name here) cannot plan to do other things with their time.

There may be specific circumstances around you wasting (insert name here)’s time that (insert name here) is unaware of. If this is the case, please feel free to contact (insert name here) so that this can be discussed.

Clinicians who imply that they can be of use and then waste people’s time are wasting an extremely valuable resource and this is not acceptable to (insert name here) or any other patients.

(Insert name here) expects a high quality service and reducing wasting (insert name here)’s time is clearly of the highest priority. 

If you continue to waste (insert name here)’s time without providing any notice of time wastage, (insert name here) will have no alternative but to bitch about you on the internet.

It is hoped that there will be no further need to contact you about time wastage.

Yours Sincerely,

(Insert name here)

Ding Dong: people seem extra happy that this female Tory is dead

Britain seems totally excited that Margaret Thatcher has expired. People all over my Facebook are organising parties, reading significance into the fact that Maggie was apparently best pals with Jimmy Saville, and making jokes (my favourite: that Atos has declared her fit to work, my least favourite: that her and Jimmy had fucking miners in common). Nobody seems to be mentioning her good points (that she had an excellent wardrobe and her services to lactose intolerant people for taking milk off the curriculum). 

I’m no Thatcher fan, but I'm not celebrating. Why would I? Margaret Thatcher may be dead but the NHS is still being privatised, Atos are still trying to kill disabled people and I’m still supposed to be on a salt free diet. 

It does seem a little like people are excited by the opportunity to openly hate women and disabled people, but I’m not sure, so I’m just going to write a list of dead white cis men who I think are hated underratedly. In no particular order, I bring you:

  1. Winston Churchill: For actively helping to colonise at least five countries, and being a particular prick about it (boasting about how many brown people he had shot)
  2. Charles Darwin: For writing some really racist and eugenicist books about the human race 
  3. KellogsFor being a racist, supporting eugenics, and for popularising breakfast cereal
  4. Lewis Carroll: For taking indecent images of children (actual paeodphilia, guys, not just being friends with a paedophile, which doesn’t mean the same thing)
  5. JM Barrie: For general paedophilic behaviour and misogyny
  6. Kant: Condoning marital rape, being a racist
  7. Roald Dahl: Oh sure his books are whimsical and do all that imagination stuff, but what is the deal with the Oompa Loompas? A white man rescues them from a savage environment and now they work, with no discernible breaks, holiday pay or sick leave, in his factory in exchange for food? Um, what? Also why are hairless women so taunted in The Witches?
  8.  D.H.Lawrence: For being a big misogynist and writing terrible, terrible sex scenes
  9.  William SHakespeareFor not paying child support
  10. Richard: we all hate you and wish you were dead already.

 

What I Fucking Hate About Marriage Equality

I’m not salt free, I’m not especially single. I’m not from the US but marriage equality is all over my social media networks. People are posting the mysterious red box with the two pink boxes inside of them and there are endless internet lists of best posters for marriage equality, funniest pro marriage equality videos, most forward thinking multinational corporations using marriage equality as an advertising theme.

 

I am not interested in marriage equality. This definitely doesn’t mean I’m interested in straight people getting something the rest of us don’t have access to, or that I don’t want queers to be able to get visas. Here’s my beef: the institution of relationships is bad for everyone, including but not confined to the people in them. I live in the UK with my partner; I’m disabled, so are they (I say my partner because that is what I have said on various forms that I have filled in – to my detriment), and the system is pretty much trying to kill us. Something nobody tells you when you acquire a disability is that if you live with a partner, you are eligible for less personal care assistance hours because the government knows you’re having sex with someone. That’s right. If you had a housemate, you’d get more PA hours. But if you sleep with your housemate? You have to rely on them to cook your meals.

 

“You’d be cooking for yourself anyway,” the social worker told me, “so you can’t get any hours for food preparation.” It wasn’t even up to her. She was taking the case to be decided by a committee of people who had never met us. I couldn’t exactly ask her to tell them that sometimes people don’t cook for themselves. I have two separate impairments that causes me severe nausea a lot of the time. All the anti emetics prescribed to me contain lactose, and dairy products give me migraines (which also make me nauseous, but a different kind of nausea. Sometimes I toss a coin to decide which kind of nausea I want today). Cooking lunch when you are trying to hold down breakfast is no picnic, and nobody should have to eat the food that you produce. Anti nausea cooking is throwing something in a pan, sticking a citrus fruit in front of your nose to take away the smell and pushing your head out of the window hoping that nothing burns. I didn’t think she’d listen if I tried to explain that not everybody eats the same pattern of meals everyday. Especially if one person is trying to work with hypoglycaemia and the other person is mainly trying to not vomit. I’m supposed to be on a low salt diet. I’m not about to impose that on anybody who doesn’t need to be on one, especially someone who has a limited appetite. Especially someone who has nausea themselves but has to force themselves to eat because they have to regulate their blood sugar. Do they want a tasteless piece of fish and some bland vegetables marinated in endless combinations of spices and acidic liquids and herbs in a futile attempt to get them to taste of something other than water? Probably not.

 

Nobody warns you, if you start getting romantically entangled with someone that lives on sandwiches, that  somewhere down the line you might acquire a disability that means that you can no longer cook and you will be made to eat their salad and proteins forced between two slices of bread that might have butter on them if you’re lucky for your foreseeable future. 

 

And nobody talks about what it means if you’re in a relationship with someone the government forces you to rely on for basic human needs. If you have an argument, you can’t storm out. Where are you going to go, anyway, if you’re too sick to leave the house? And you can’t tell them to get the hell out of your space. Who is going to cook your dinner? What happens if you break up in the middle of the night during a prolonged argument? Social services aren’t going to send round someone to make your breakfast in the morning. They’re going to need to stay, or you’re going to starve.

 

How does that affect you in a relationship? How does that affect how you can and can’t break up? One of my favourite break up stories is from my friend’s mum who reported waking up one day, seeing her husband across from her in the bed, and thinking, oh god, not you again. By that lunchtime, he had moved out. If she’d had to rely on him for personal care assistance, they might well be still together.

 

How do you negotiate things like monogamy, space, privacy, taking a break, when you rely on someone for three meals a day and more?

 

I applied for Employment Support Allowance recently when a mixture of a difficult family situation, mental health issues and physical health issues came to a mini crisis point. I wasn’t eligible for any, because my partner was working. And due to one thing or another, her last PA didn’t work out, and her direct payments had been coming into my account – all sixteen hours a week of them. I was suddenly without a job, with no benefits, now relying on her sixteen hours a week so I could pay rent and bills, meaning that she couldn’t immediately find another PA, so she was forced to rely on me for everything. And I was sick and unreliable and couldn’t provide everything. I felt stupid. Why did I write ‘living with partner’ on the forms, why didn’t I write single?

 

It was because that first social worker had looked like she was onto something, about the flat with one bed, and she had seemed so refreshingly un homophobic that I felt I owed her the truth, or a version of some kind of truth, not a truth that involves fairly frequent break ups, bouts of pretending that we’re not dating each other to our friends to save us from some of the social pressure that comes with being in a public relationship that other people get invested in, periods of not being with each other, arguments, burnt food and intense clothes sharing. Ultimately that social worker was just filling in boxes on a form that didn’t include such categories as ‘dating each other on and off but for a prolonged period of time and also living together but more for economic and social reasons than for romantic reasons’; it’s not her fault, and there’s nowhere she can go with information more nuanced than ‘living with partner’.

 

I blame the government, for thinking that partners should take all their meals together, and for thinking that when you’re sick or unable to work, your partner is there to provide economic support. It’s clearly a way to save money. Let’s not give money for personal care assistants; it’s unlikely that their partners are just going to sit by and watch them starve – they’ll cook, they’ll clean, they’ll do personal care. But what if they don’t? Let’s not give money to people who are too sick to work – their partners won’t leave them destitute. They’ll top up their Oyster cards. They’ll pay their bills. They’ll keep a roof over their heads. But what if they don’t? My personal view is that they’re hoping we’ll die. Then they definitely won’t have to pay for anything more for us, apart from possibly a state funeral (which is surely cheaper than  a personal care assistant).

 

And the same government is promoting ‘family values’, whatever those are, it’s never quite explicit, and further marriage benefits. I personally think it’s hard enough to get out of relationships anyway. Even the supposedly ‘good’ relationships. I was with one guy for over four years of my life partly because it hadn’t really occurred to me that I could leave him. He seemed so nice, and everyone told me I was crazy for breaking up with him. They don’t know that he was controlling and that I hated having sex with him and that he once pinched me hard enough to leave a bruise that stayed for weeks because I was talking to some boys from my college on a coach journey to a Stop The War march in a way that he deemed flirtatious. I am grateful that I didn’t acquire a disability that left me unable to cook whilst I was living with him because I hated his cooking; he would sprinkle untoasted cumin into otherwise unflavoured stews and call them curries and he was experimental in the kitchen in a way that has put me off any kind of fusion food for life. Do we really need more reasons for staying with people?

 

It’s hard to be single. People judge you. And I hate to quote Carrie Bradshaw, but where is the wedding shower for single people, the huge reception for single people, the anniversary for single people? It’s more expensive to cook. It’s dangerous to wander around alone at night. Having a partner can provide you with a certain amount of protection from external sexual abuse, although you often have to juggle that against the way they are treating you sexually and calculate whether it is worth it. When I was single, more than one person offered to set up an Okaycupid account for me, even though I had not expressed any interest in dating anyone. I finally got an Okaycupid account and received totally disgusting sexual propositions everyday in my inbox until I worked out how to use my Googlemail spam filter. You don’t get cheap hotel deals. Delia is the only person who has made a mainstream cookbook for you, and even that is tinged with pity. There is already more than enough incentive to be in relationships. I want campaigns to focus on removing straight people’s marriage benefits rather than giving them to queer people. I’ve heard all the arguments about the things that queers have to go without because their marriages aren’t recognized, and I hate to be basic, but it seems to me that single people are also going without all these benefits. Where is the campaign for single people? Where is the campaign for people who want to sleep around or love around or want to do their dishes in a different house to the people they have sex with?

Reasonable Adjustments

Dear reasonable adjusters,

Your ableism gives me anxiety. Which in the long run will probably make my chronic impairment worse, so I’ll end up taking even more time off work.

Want to rethink your employment plan?

Love your employee

xxxx

Open Letter to my Employer

I am not interested in your life. If I am too sick to work, I am definitely too sick to be interested in you telling me how difficult your day will be because I am not coming in (or, more accurately, how my disability is ruining your life).

Don’t tell your employees that you are ‘very understanding’ about their disability. This is something your employees should be saying about you, if it is, in fact, the case. If you find that nobody is congratulating you about what a fantastic boss you are when it comes to disability, this is a cue to get better about disability stuff, it is not a cue to start telling your employees how fantastic you are. They know what you are like. They know whether you are ‘understanding’ or whether you are in fact an inappropriate, passive aggressive bully.

Don’t tell your employees that you are ‘very understanding’ about them needing time off because they are ‘so great’ when they are well enough to attend work. I mean what the fuck do you mean by this? Do you use some kind of graph of work performance in order to determine whether or not you allow sick days? Don’t be ridiculous. If your employees are sick, don’t try to make them come to work, even if their performance is TERRIBLE. You can’t punish bad performance with withdrawal of sick days you twisted little fascist.

Don’t use my disability to make you feel like a good person. “Well I have this disabled employee, and I’m not one to blow my own trombone, but I am SUPER understanding about it. I mean, I take reasonable adjustment to a whole other level, it’s actually incredible how passionate and respectful and appropriate and understanding I am about disability stuff.” My disability never makes me feel good about myself. The least thing you can do is not use it to prop up some idea you have of yourself of being some kind of amazing Mother Theresa style person.

You are legally obliged to make reasonable adjustments. If you think you are making adjustments that are not reasonable, either stop making them, seek legal employment advice or keep making them and shut up. Don’t make them in order to whitemail me into receiving your bullying, ableist messages without question, or even worse, whitemail me into messaging you back sympathising with how difficult I am making your white, middle class, heterosexual, able bodied life.

By the way, you are not making any unreasonable adjustments. You are barely covering the reasonable adjustments. You are just about as reasonable as the government are. Does that make you feel good? The same people who are trying to privatise the NHS, who are cutting sickness benefits for people who die within the same year, and are shutting down public libraries – you are as reasonable as these people. Congratulations.

Saying ‘I look forward to seeing you tomorrow’ will not actually incite me to come into work tomorrow if I am still not well enough. Yeah, I saw right through that one. Your words are not as powerful as my balance disorder you idiot what made you think that would work? I’ll attend work if I’m well enough, and not before.

Love from your eternally grateful employee

xxxx

PS. I fucking hate you and I have not infrequent fantasies about dancing on your grave

'article in the Hindu Point of View and CREA's website Sexuality and Disability'

It’s on, Dr. Ali

Babes at the Museum Spoof: Meet Ginny reposted from Blasian

blasianlikeus:

Ginny is Korean. Ginny loves museums. Ginny is a babe. Who would have thought the three could meet?

When she’s not topping Asian hot dogs she’s cruising the streets of Chelsea looking hot whilst looking at art. She goes to the museum because she’s hot and she likes art.

Real talk: Ginny is a dope artist and her blog is here.

In order to find this funnier, check out the real site here 

I will miss kebabs

In the UK, kebabs are often talked about as a dirty food group. A lot of (white?) people who drink alcohol often claim to only eat kebabs when they are drunk, which has the effect of categorising eating kebabs with all the other things these people often do when drunk but claim to not do when sober (commit erratic acts of violence/vandalism, start pointless arguments, vomit in or on something that is not a toilet/sink/bucket/sick bag/makeshift sick bag, urinate in or on something that is not a toilet/catheter bag/incontinence pad, call their ex partners, grope people in clubs, go to sleep in their clothes without removing make up and/or brushing teeth, etc.). 

The idea that kebabs are dirty and should only be consumed when drunk has become so widespread and accepted that confessing kebab consumption can be used as a shorthand to describe how drunk somebody really was.

"Heavy night last night?"

"Well, let’s just say I had a kebab."

Laughter ensues. Both parties enjoy a warm feeling they get from bonding over both being drinkers and both coming from ethnic backgrounds that are not routinely associated with food so dirty that sober white people would not eat it.

Kebab stories are also used to talk about bodily functions in a way that is enjoyable and not humiliating. UK society is often noted for being able bodiedist and prudish about bodily functions and making people who don’t have the idealised control over their bodily functions feel like shit. People who are perfectly happy to provide able bodied style toilets for their event often kick up a fuss when asked to provide wheelchair accessible toilets; able bodied comedians often make jokes about incontinence with reference to people who are older than themselves with either a limited notion of getting older themselves one day and likely becoming incontinent AND/OR a complete and consuming fear of it; people widely express embarrassment when asked about their bowel movements by medical practitioners; women/femmes in particular are expected to go to great lengths to hide their bodily functions (I have a friend who used to go to the local pub to have a bowel movement when her boyfriend was staying over because the walls were extremely thin and she was sure he would hear her defecating and find her less sexually attractive - he probably would have done). 

Many TAB (temporarily able bodied) people feel inhibited and restricted about talking about bodily functions because they don’t want to be associated with disabled and/or old people because they think disabled people and old people are vaguely gross in some way that they don’t want to analyse, and also because there is a lot of pressure on feminized people to be sexy and pretend they don’t poo. There are a range of euphemisms available so that people can talk about bodily functions without using the actual words most closely associated with it, which is ultimately unsatisfying, and then there is the word diaorreah which actually discourages writing about the condition because it is so hard to spell.

Enter kebabs. Want to talk about your bowel movements without being associated with gross old people or gross disabled people? Use a kebab in your bowel related story. The blame will be firmly placed on kebabs (or actually, on the people that bring kebabs to your drunken lips - not the actual individual people, because people who make and sell kebabs are not really people to you, they are just a vague ethnic group that you associate with something that you call ‘the middle east’ in your head although you have no actual geographical notion of where this is and whether the kebab you eat is a feature of the cuisine of this vast but vague imaginary place) and you will be able to talk about your bowels shame free. (Note: travelling [different to holidaying; something mostly white middle class people do in between finishing further education and entering higher education] is another thing people do partly to be able to talk about their bowel movements more freely and blame it on the people of colour who add too much spice and supposed salmonella to the food that they eat).

"Oh god I had such a dodgy kebab on Friday night. My tummy was not happy!"

"Haha."

Laughter ensues and both parties enjoy a warm and slightly titillating feeling they get from discussing bowel movements in a public arena and bonding over the fact that they both come from ethnic backgrounds that are not routinely associated with food so dirty that it makes extremely drunk white people vomit and experience digestive disturbances.

The only bad thing I can see about kebabs is that they do contain salt (which isn’t their fault. And Meniere’s disease and kidney problems are not my fault. This is an amicable separation). I am very sad that I won’t be able to eat them anymore. 

For an account of another racialized food group, read:

http://frankiewearsfatgoldchunkychains.blogspot.com/2010/10/gentrification-of-fried-chicken_2110.html#comment-form