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It’s trans, not trans*
It’s trans men and trans women, not transmen and…
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Sometimes I lose my appetite for days or weeks – even the foods I normally crave become as appealing as eating paper towels. It normally goes hand in hand with sensory issues with the food. These are some of the tricks I’ve learned to make sure I get enough nutrition anyway
- The first and most important thing is you need to remember that eating anything is better than eating nothing. You may need to suspend your normal standards or rules – eating foods that are less “healthy” than normal, eating the same thing over and over gain, or just not enjoying your food as much.
- Energy (calorie) dense foods like nuts or energy bars are really helpful, especially if the actual process of eating is unpleasant. Sometimes its really nice to be able to eat a meals worth of energy in under a minute
- Chewing gum helps me get my appetite going – If I am trying to get myself hungry for a meal I will often start with gum 30-40 minutes before.
- I rely a lot on eating a little of something I’m comfortable with to pique my appetite and moving to a different food group afterwards. Eating the first thing is always the hardest – I find after I start my brain realizes that food is ok and I can move onto larger portions or a different food.
- When I eat something sweet I tend to crave more sugar later. So I use this to my advantage and have a small portion of something with some sugar in it and then wait to be hungry for more. Sometimes I will try to eat something a little more nutritious the second time, others I just have more of whatever was finally able to pique my interest
- For the same reason consider other foods you find hard to put down. I’ve heard that things with both carbs and fat in them are the most “addictive” and I use that when I’m struggling to get enough to eat. It’s ok if this is a “junk” food – remember eating anything is better than eating nothing
- Ginger tea or ginger chews make my stomach feel better
- Keep track of your food. It can be really informal, like making sure you don’t skip meals, or it can be some other strategy of keeping a food journal or counting calories. You don’t need to be super precise, it just helps remind you to eat when your body isn’t sending the right signals
- Look at “food porn.” Scrolling through a food blog you love on tumblr or watching a cooking show can be a good way to get your appetite going
- Have a nutritional drink like an ensure can help you make sure you are getting all the nutrients you need without much thought. I find ensure is best very cold or on ice.
- Look for foods or categories of foods that seem easier to tolerate than the others. This might be something you know is easy on your stomach, something of a certain texture, something hot/cold, or just a favorite food.
- If there is a food that you find less unappealing than the others, or feels “safe” to you go for it, even if you’ve eaten it many times in the last few days. I even find having eaten a food or meal in recent memory helps convince my body its not gonna be harmful
This is really helpful! As an addition I should mention that Ensure makes a dairy-free drink now, Ensure Active Clear Nutrition Drink. My housemate, also a spoonie, has learned through experience that it makes a great mixer if you run out of regular juice while drinking with friends :3
Also important: when you grocery shop, remember how you eat on your worst days. For me this means instant pasta and pre-cooked ham steaks; for my roommate this means lots of frozen dinners and the occasional bag of candy. (There has never been a time when I’ve found a Reeses Cup stored in the freezer unappealing.)
When eating is hard, I frequently find the process of making a meal unrewarding. By all means, load up with fresh fruits and veggies and make actual meals, but on days when that just isn’t possible, have be sure you have something you can shove into the microwave, something texturally pleasant you can eat out of a box, or an easy-to-prepare comfort food on hand. Keep protein bars by your bed and ramen in the cabinet. Hack your living space to make eating as intuitive and stress-free as possible.
[Image description: irregular pentagons in varying shades of green, with “Tips for eating when you have zero appetite” superimposed over the top.]
Loving these additions!!
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I’m in the hospital right now. I don’t like it here and can’t wait to get out. Like you, I have a rare neuromuscular disease that has made me very weak my whole life. When I was a young child, I was in the hospital all the time. There are so many things about it that I don’t like. I don’t like nurses sticking needles in my arms and hands. I don’t like the painful physical therapy. I don’t like them connecting me to tubes that are supposed to help me breathe better.
I’ve been in the hospital this time for seven weeks and I probably won’t be getting out for a while. Something bad happened in my brain called a stroke. And the next day, I actually died for four minutes until the doctors could bring me back to life. I’m so happy they did because I love my life!
When I was born, doctors told my parents that I wouldn’t live past the age of 15. But now I’m 51 years old! I have always been weak and skinny with no muscle strength, but people are always amazed at what I’ve been able to do. I have three kids who are ages 23, 21 and 18. Despite the fact that I can barely move my arms, I can drive my van. I travel around the country and the world, telling people about the fact that they have the inner strength to do anything they set their heart and mind on. I have written three books and been on television a whole lot of times. One time, over a million people saw a documentary film about my life. (I can send you a copy if you like.)
When I get out of the hospital this time, my life will be different. Now I have to live with a little sack in my tummy and I get fed through a tube. I will still be able to eat, but the tube will make sure I get enough food. I also have a new hole in my neck called a tracheotomy which will help me breathe. But I don’t mind these new problems. As long as I get to live, laugh and love for many years to come, I will be happy. I look forward to meeting you someday soon.
“The Strength Coach”
Image Descriptions: 1) Greg in the mid-1970s riding a horse at MDA summer camp. A counselor sits behind him and holds Greg’s waist to keep him balanced. 2) Greg sits in his power wheelchair on stage in a business suit. His fist is raised as he gives a motivational speech to a large audience (not pictured). 3) Greg and his son, a college football player, are shown together on the football field. 4) Greg sits in his power wheelchair at his laptop while in his hospital room. He’s eating ice chips. His tracheotomy tube is visible and there are hospital monitors in the background. Greg has a bright smile on his face in all of the pictures.
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New ‘stay tied’ laces that never come undone, now for people who love Thomas the Tank Engine!
Useful for people with motor difficulties or learning disability. Non-Thomas toggles are also available and these laces are used by world champion athletes (especialy Ironman and triathletes).
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Tips for First Time Wheelchair Pushers
(this is a REBLOG from the awesome and highly recommended Latentexistence blog)
“Today my sister used a wheelchair for the first time. (We share the same inherited mitochondrial condition.) Her husband has little experience of pushing a wheelchair so I tried to give him some tips, which resulted in what I have written below. Believe it or not there is actually some skill involved in pushing a wheelchair and keeping the person in it comfortable. These are just observations from my own experience of being in a wheelchair pushed by someone else, but everyone is different. If you’re pushing a wheelchair for someone new then you should ask them if they have any preferences.
- Communicate. Ask if there’s anything you need to know first. NEVER touch or move a wheelchair without permission.
- Don’t overshoot checkouts and reception desks. If you are level, your passenger has gone too far past it.
- Don’t bump your passenger’s feet into people, objects or walls. Particularly in lifts.
- Don’t follow anyone too closely. (See previous point.) Your passenger is closer to them than you are, and seeing backsides that close gets tedious.
- Watch out for oddly sloping pavements, especially near dropped kerbs. The wheelchair WILL veer sideways into traffic if you are not careful.
- Look ahead for bumps. Dropped kerbs are often not dropped very much. Be prepared to walk a long way around via the road.
- Always approach bumps straight on. If you are not straight, stop and turn first.
- It can be easier to go backwards over bumps if the wheelchair has large wheels.
- Pay attention to the surface you travel over and take the smoother path. Cobbles can be painful or tiring for someone in a wheelchair.
- Don’t let the wheelchair run out of control. Consider taking slopes backwards so you can hold back the wheelchair. CHECK FIRST!
- If your passenger says stop, STOP immediately. (And, indeed, follow other instructions – see comments on original post.)
- Try going through heavy doors backwards so you can push the door with your body.
- Some wheelchairs have brakes operated by the passenger. Never assume that those brakes are on or off, always check.
- If someone speaks to you when they should speak to your passenger, tell them so.
- Be forgiving of your passenger. They have no control and that may make them grumpy. Wheelchair users: be aware that you might be shouting at your assistant more than you realise.
- If you’re pushing a wheelchair very far then you’ll probably want to get some gloves.
Thanks to @knitswift, @chmasu, @missnfranchised, @lisybabe on twitter”
Added tips of my own (my wife and I traveled for 3 months around Australia with a backpack and a manual chair and often use a manual chair on holidays)
– IN ALL CASES DISCUSS THESE TIPS WITH THE WHEELCHAIR USER FIRST –
these might also be considered ‘advanced’
a) If you will be pushing for a while try and get the handles adjusted so they are the correct height for you, it is much better for your back.
b) Make sure the handle grips are secure and are not coming off or unscrewing.
c) Bulky bags hanging off the back can make the pusher ‘stoop’ over them, again not good for the back. Weight on the back can change the likelihood of the chair tipping over. Be aware of the dangers.
d) Leaning the chair back slightly while pushing can make it less bumpy for the passenger and easier to push. This is because inflatable back wheels are smoother than the fixed hard ones at the front suspension-wise. Similarly, tipping back very slightly when you go over bumps, manhole covers etc makes it less jarring
e) It is easier to pull backwards on sand and other less firm surfaces, rather than push. By the sea, get down to the water’s edge where the sand is firm or look for the wooden boarded walkways.
e) If you HAVE to go down steps in a manual chair, you need to be strong and confident. If someone offers to help,
Either: tilt the chair back, get the other person to stand in front of the chair and steady the front wheels. Tell them NOT TO LIFT THE CHAIR at the front. Lifting it is unnecessary and this makes it very hard on your back rather than rolling down one step at a time. Rest or pause after each step.
Or: If you are on your own it is better to go backwards. Take one step at a time and pause between each. Don’t attempt more than 3-4 steps.
Obviously this is dangerous but sometimes it is unavoidable.
f) Going down steep slopes is difficult as you do not want the chair to ‘run away with you’. Go slowly in a ZIG ZAG PATTERN. This makes it less steep and you can turn pause to rest by turning the chair sideways to stop it rolling with gravity. Going backwards is also safer as mentioned above.
g) Keep well clear of the edge of the kerbs, avoid running over grills, glass, look out for mess on the pavement!
h) Get into the habit of always putting the brakes on whenever the chair is stationary.
f) Wear solid footwear with good grips, if you slide so will your companion! Be wary of sandy or stony slopes where you may slip.
g) As well as wheelchair signs, look out for signs aimed at pushchair users. Never use revolving doors at hotels. Ramps and slopes are often at the side of hotels or older buildings.
h) Ask in shops with poor access if they have ramps. Sometimes they have portable ones. Just asking may encourage them to buy one or make changes or mention it to management.
This is wonderful advice, and I’d like to add on my own rule as well (although it’s probably common sense):
Don’t let tiny children wheel
someone around unsupervised, especially if there’s two of them and one is
riding on the person’s lap and will encourage the other tiny child to go
You see, I was
the “driver” and I couldn’t have been more than 7 or 8, my sibling was a
year and a half younger than me. We’d finished helping an old friend move
stuff out of her apartment, and I think Mom asked us if we wanted to take
Grammy out to the car. Naturally, being the brave and responsible
7/8-year-old I was, I volunteered but so did my sibling. Being older, I
got to “drive” and my bro got to sit in Grammy’s lap. We get down
and out of the apartment safely and smoothly, and onto the parking lot. I
did kinda speed up a little, it was kinda fun, and my sibling starts
going “Faster, faster!” And Grammy’s giggling the whole time so clearly this
was a good idea. We go faster, we’re getting closer to the car, they’re
both giggling because we’re going so fast and I’m laughing too, but the ride is
starting to get kinda bumpy. We’re almost to the car, I hadn’t thought
about the stopping part, and my brother realizes this and quickly bails on me,
leaping out of Grammy’s lap as she’s laughing all the way. I manage to
turn the wheelchair and jerk to a stop, but I end up (please don’t kill me) I
end up flinging my Grammy under the car.
And a good distance too! She’s stuck under there, she can’t move on
her own and we can’t move the car without risking hurting her. This whole
time I am mortified and terrified of what my parents will think of me and
how mad Grampy and Grammy will be but all I remember is Grammy giggling and
laughing under the car like it was the best joke she’d heard in years. We
did end up getting her out safely, (even if it was a struggle) and she
apparently never told anyone who did it when she was asked. I miss her a
lot, but I’m really glad she taught me the invaluable experience of never
letting a tiny child drive someone in a wheelchair, and keeping my secret.
My parents and Grampy never knew who did it until I brought it up in a
conversation years after she passed. She was a good, sweet old lady.
((if you really feel this wasn’t okay for me to add I’ll delete it))
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Please can you help @oneswitch improve game accessibility on the xbox by upvoting this?
“Promote Very Broad Difficulty Adjustment in Games
To take into account players with slower reactions and/or understanding, please, pretty please, do something about the very hard difficulty level in many games.
In the late 70’s/early 80’s Atari used to offer difficulty level adjustment for one or two players. They used to offer easy play options.
Things seem to have gone backwards since then in main-stream games. For many players there is no such thing as too easy. Game developers need to hear this message.
Even if it’s just for a segment of the game, some practice areas, or a range of restricted on-line arenas, this would be a step in the right direction.”
Link to vote (you need a microsoft account)
many thanks, if you can’t vote then please signal boost
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DON’T “JUST SAY HI” TO ME…JUST FUCK OFF INSTEAD
(reblogged from Dominick Evans please add comments to the original blog)
“I’ve heard my whole life that I have a bad attitude. Ain’t that the truth?! Look, you may have seen those videos getting passed around the web by celebrities like William H. Macy that encourage you to just say hi to disable people. Well I have a message to counter that for myself and all the other crips with bad attitudes. Don’t say hi…Just fuck off!
You may think I’m writing this in jest, but I’m halfway serious. Look, I’m sure you’re swell and all that, but people already tell me hi ALL THE TIME. This is no joke. Because I use a wheelchair, most people assume that gives them liberty to not only come up to me and talk to me, usually in a condescending and infantilizing way, but also to touch me. Imagine if every time you went out into the world a curious bystander came up to you, usually after staring at you long enough to make you uncomfortable, and then not only talked to you like they were your preschool teacher, but they also thought that it would be OK to put their hand on your arm or touch your head to pat it as though you were a dog. People do this to me all the time…people I don’t know.
I’m every guy’s buddy or pal. I’m every gal’s sweetie or honey. Usually that’s accompanied by the person saying something patronizing like mentioning how it inspires them when I come out into the world, or they ask me how I’m doing and tell me to enjoy whatever I’m doing no matter how mundane it is. I’m sure you’re a great person, but I have places to go. I’m not always in a great mood. I have good days and bad days, and days where I want to be left alone, but none of that matters to you so long as you get to say something to me to remind yourself and everyone else in the world what a great human being you are!
Having a disability takes away most people’s access to privacy. The world truly has little concern for what is going on in our lives as disabled people. Instead there is this innate curiosity about us, which makes it impossible for most people to not say something. What’s even worse is when these people don’t even talk to those of us with disabilities. Instead, they talk over us, usually to able-bodied companions, even if we are right there listening to you talk about us, as though we cannot comprehend what you are saying. Newsflash…we can and we most likely think you are a dick!
Whether you talk to us or to our companions, you need to consider how we feel about the experience before engaging us in conversation. I’m sure you have days where you’d love to be left alone, but those of us in the disability community often don’t have that freedom, to deal with emotions, our lives, our losses and failures in private. Heaven forbid we respond rudely or ask to be left alone. The onus of our attitude is placed squarely upon our shoulders, and we are deemed rude, uncooperative, and unfriendly. That’s when the real anger comes out from those of you trying to engage with us, and most likely the horrific name-calling.
It should be noted that I respond with an overwhelming sense of kindness in most of these situations. I respond to questions. I put on a smile. You would never know that I would want to punch you in the face (I jest.. It’s not like I can lift my arms anyway LOL). I go out of my way to make your day, by answering you, even when I really don’t want to, nor should I have to.
I am not here for you to be inspired by me. I am not here to make you feel better about yourself. I’m here because I’m a human being just like everyone else. So next time you approach me, or any of my friends with disabilities, don’t say hi, unless you would say hi to everyone else around you. You don’t know what I’m going through, where I’m going, or even if I want to talk to you. If you wouldn’t say hi to a non-disabled person, don’t say hi to me. Instead, just fuck off, because frankly that’s the way the majority of people would act around anyone else.”
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UN’s International Day of Disability 100 Britain’s Most Influential People with a…
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