Disability, gender, body image and generally hating everything

I've been meaning to write on the topic of disability and body image for quite some time.  Of course, the intention was to write something eloquent that people would relate to - with a hint of academia to boot. Alas, no.


I generally think I'm quite good at dealing with this crip shit, but not today.  Today it just really bloody hurts.


*trigger warning for transphobia and bad hospital experiences*


Also, this is a bit long I'm afraid but it's important for me to voice this.


You see, I've been filling in my DLA and ESA renewal forms.  For those who don't know, DLA forms request an intrusive amount of information about things like how often you go to the toilet, how long it takes and what help you need.  All fun stuff.

The thing is, I spend most of my time living - not counting the amount of times I shit.  I also try and ignore a lot of the times I probably need assistance and try and pretend it's normal to put up with certain things. The thing is; it's not normal.  DLA forms serve as a reminder that your care needs are not only higher than you originally thought, but that the chances of you getting those care needs met by social services or the NHS are slim to none.  


That's right! You're a smelly cripple but we're not going to help with that - here's £20 a week compensation. p.s we ignored most of your needs anyway.


It's also pretty bloody impossible to fill in those forms and not feel like some degree of a fraud.  After all, the daily mail says so!  Last year I made myself very sick repeatedly attempting to walk short distances and timing it. The thinking went the lines of "Bugger! Today I managed to walk 5 metres in 2 minutes but I put 2 metres on the form!  Will I get done for fraud?  Am I taking money away from others?  Am I just fat and useless?"  I wish I was joking.

Today I had a doctors appointment in the same department of the same hospital on the anniversary of my month long stay in hospital last year.  That stay was traumatic.  I was accused of making things up, ignored by nurses leading to several completely avoidable embarrassing wet beds, told that one single test could decide whether I was telling the truth about my care needs and general treated like some crazy person who was making things up (because you know, mental health issues are something to ignore anyway.)  That hospitalisation has left my medical records scarred and my body image in shreds.  


In that hospital they taught me that I was worthless, that my care needs were worth nothing because I lacked the back up.  On hearing my gender history my validity on a male ward was loudly questioned, calling the gender clinic psychiatrist became more of a concern than the fact I couldn't move or empty my bladder (13 hours in total without a non silicone catheter). I was assigned an endocrinologist (on the assumption gender is more relevant than impairment) and left writhing in pain when the urinary retention inevitably lead to infection, agonising abdominal pain and vomiting. After finally responding to my buzzer the nurse simply replaced the kidney dish without asking why I was vomiting.  I had to buzz again to explain that this was not normal.  Throughout the night I was told that the doctor was dealing with 'far more sick people' despite the fact if I was at home I would have called an ambulance by now.  When I finally did see the doctor I was told I didn't need to catheterise, apparently just pushing on my bladder would do the trick!...because you know not pissing for 13 hours is normal let alone when you're partially incontinent....kinda weird for it not to find it's way out.

It's one year since I left hospital and I'm still feeling the affects. I have care but no care package which means no guarantee the care will last till tomorrow and no choice over whose hands wash me each day.  Social services have no understanding of the need for a 'safe' carer when you're trans, autistic, have PTSD or have other body issues.

Arriving at the hospital today was enough to set my heart racing.  Thankfully a quick stroke of the hand from an understanding friend and the reassurance that swearing at the nurses who mistreated me would be back up by them saw me through.

Then to urology.  I'm fairly open about this stuff with my close friends and perfectly able to be lighthearted about it but there's still that voice at the back of my mind saying "you're not good enough. You're not adult. you're disgusting."

Then there's the nerves about potentially disclosing and the inevitable:
"so when were you diagnosed with MS"
"urm, I don't have MS, I have a diagnosis of 'possible CFS'"
"So why do you use the wheelchair?"
*facepalm*
....it's like the diagnosis means everything.  My experience of living without a diagnosis is one of being judged at every angle. Someone with MS can have exactly the same impairments as me.  The only difference is an MRI scan.

Yet again I find myself emphasising the seriousness of the issue in order to get any on going monitoring, being careful to say "oh yes, thank you, that's really reassuring" when really I'm thinking "what the hell is wrong then?" and being careful not to mention specific issues that sound too damn weird to be believable.  One day, I hope that even if my healthcare is not straight forward I can at least see the paranoia lifted and feel able to be honest.

Whilst feeling pretty damn awful about my body image already given that I feel infantalised, deligitamised and like a fraud I headed in to sainsburys.  One comment was enough to knock me to rock bottom.
"yes madam?"
This has happened a lot since I started using a wheelchair.  People don't look at me.  As soon as they've looked they apologise and change to 'sir'.  I feel bad. This shouldn't bother me.  I happen to think gender is a massive undefinable blob but I also have to live in that blob. I know if I wasn't trans I'd probably shrug it off as me being a bit effeminate and him being a bit lazy....but I can't.

Those words just reminded me of everything atypical about my body and made me feel like I'm not good enough.

I wish I could say 'enough, no more.' but I can't because it's all so ingrained...and I'm not the only one.   None of this stuff is anything to feel ashamed of but it's really hard to feel empowered about having a body that's different when you're constantly met with resistance and disgust. 

A noobs guide to potential equipment/adaptations part 2: food/cooking

I'm still not writing on here as much as I'd like but at least the posts are getting closer together!

Food!

Food is one of those annoying things that you can't do without but can take a huge amount of physical and mental resources to prepare. Chopping veg, opening packages, lifting pans can all be difficult or impossible if you have a physical impairment and mental health issues or fatigue can make the task of cooking a well balanced meal seem insurmountable.

Unfortunately, most of us don't get the help we need.  Even those of us lucky (?) enough to qualify for care provision may find ourselves with such a small time frame for food preparation that our food choices become extremely limited.  Here are a few things that I've found invaluable in my quest to eat as healthily as time and physical limitations will allow.

Firstly, meet my three friends.

Say hello to 1) George foreman

"Hello" (what? It looks like a mouth!)

2) The slow cooker

 

and 3) Microwave

And on to....

10 food products this crip loves

Most of these products should be available in any bigger supermarket.  Shop online!

1) Frozen microwavable rice

Reach for store's plain, own brand.  Comes in steam bags that you just put in the microwave.  Watch out for the flavoured frozen and cupboard (e.g uncle bens) rice mixes as they are more likely to contain additives.

2) Frozen mashed potato

This comes in little pellets which you microwave.   It sounds a bit gross but it's really alright. Great for satisfying a craving but not particularly healthy!

3) Frozen steam bags of veg

Great for adding a portion of veg to a meal. Shove straight in microwave.  Also available in store's own brand.

4) Frozen preprepared vegetables

Again, these are available fresh but they tend to not be so good value.  Most shops seem to have them but sainsburys and Ocado seem to be best.  You can get individual veggies e.g butternut squash, spinach, broccoli, onion; but also casserole mixes, mushroom medleys, Mediterranean grilled veg and my favourite - the frozen stir fry mix You can also get frozen garlic and herbs. 

5) Aunt bessie's frozen Finely chopped veg

Gets a special mention because it's so versatile.  Add it in to curries, bolognese or just an omelette. Veggies with little work. Particularly useful if you don't actually like vegetables that much.

6) Quorn fillets

I'm a vegetarian but as these are low in fat, high in protein only around £2 a bag, I think they have their benefits for meat eaters too!  Put them in the George Foreman grill with a little lemon juice and ginger or add pasta sauce afterwards.  I sometimes just eat these first 3 items together as a meal when time is short.  Well worth checking out the rest of the range too.


7) Beans, grains and pulses 

Pour a tin or two of these, some frozen veg and sauce in to a slow cooker and you're away!  Some are cheaper to buy in bags but be sure that you get ones that don't need soaking first

Personally I always have the following:
Tinned:

Butter beans

Kidney Beans

Cannellini beans
Borlotti beans

Chick peas

Bagged:

Green (puy) lentils

Orange (dahl) lentils

Pinto beans

Bulgar Wheat

Quinoa

Pearl Barley

8) Chilli beans (KTC are the cheapest but best brand in my opinion)

These get a special mention as they add so much flavour to casseroles.  Try using them as a base for slow cooked chilli or make a basic sausage and bean casserole with:

1 tin chopped tomatoes

1 tin chilli beans

handful of green lentils

handful of pearl barley

handful finely chopped veg

1 pack linda mcartney veggie sausages

Cook on low for around 6 hours and eat by itself or with rice.

9) Tinned tomatoes

Most people use these but did you know that you can get pre seasoned tins?  Great for getting a quick meal that actually tastes of something.

10) Microwavable porridge

Comes in a sachet which you then use to measure the milk out with.  Lots of flavours available.  Also works with soya/almond/rice milk etc

That's it for now folks but I hope this is of use to someone!  Am hoping the links do work too!  I'll probably post some of my own recipes at some point too.