My YouTube upload from last week. I’m both a wheelchair user and I receive all essential nutrition via a feeding tube that runs into my intestines. This doesn’t mean I can’t still enjoy the normal pleasures of life, sometimes it just means adaptations, and smaller amounts of said pleasures than is considered ‘normal’.

Too much, much too fast.

I debated posting this kind of thing so many times in the past couple of months. It seems important, though. Starving while surrounded by abundance of food and a culture of over indulgence is a strange and terrible thing.

I got dressed up with the intention of taking some awesome hospital glam photos in my GP’s office today, but… Sometimes, it’s just not going to happen.

I had to try on about 10+ different pieces of clothing before I could find an outfit that wasn’t just falling off me thanks to the 25lbs I’ve lost in the past 6 months. Getting dressed and undressed over and over with joints that don’t stay in their sockets, and low blood pressure…

You maybe can’t imagine how that leaves me feeling, but let’s just say it’s not glam. And that’s completely okay. A big lesson that has featured in my life these past few years is learning how to have flexible expectations of myself. How to let go of an idea that may not be possible given my physical limitations in that moment.

I’m still learning. It’s all about experience points and leveling up. There is no level cap in these lessons, just like anyone’s life, sick, disabled, or not.

Subtle hospital glam. Ambulatory medical tests require you to ‘go about your ‘normal’ activities’ while undergoing the testing. This was my latest 24hr holter monitoring (ambulatory ECG). It happened to fall on my 10 year anniversary with my love.

This was taken as I was getting ready to go out for our date. Seeing these photos a week later, I look sad; even though that wasn’t my intention. On reflection I think I was sadder than my steel-braced consciousness was allowing me to perceive. A night or two later I had my very first enormous, sobbing, spluttering cry since the arterial dissection/stroke in 2013.

When I took these photos I intended to share them as a ‘looking glam and awesome, despite this ugly medical inconvenience’. I wanted to look peaceful. Divorced from that moment, instead, I look somber; almost funerary given my clothing.

Grieving is fucking hard. It’s even harder when it’s for yourself.

Black and white feels. Force feeding, inability to shower, force showering.

Rainy ninja missions. Keep on staring, random strangers; IDGAF.

Am I a cyborg? An astronaut? A ghostbuster? Pretty sure this means I get to collect backpacks now.

h. e. a. l. i. n. g

Threadbare.

From the biggest times to the smallest times. {almost}

Weight is a really weird thing… I originally put so much weight on due to medications I had to take, being sick and inactive so much, and after years of struggling to lose much at all I currently can’t stop loosing weight.

We have deep built-in associations with thin=healthy & beautiful. I’ve been trying to get my head around it for months; as I so uncontrollably wasted away.

On the one hand I much prefer how my body looks now (although I am lamenting my lack of boobs again), and I can’t help but wonder if that’s because of what we’re led to believe as a society, or if I do actually just feel more like myself. The weight gain never felt natural or ME; I felt like I was living, trapped, in an alien body for years. I do genuinely feel more like myself.

Once again I’ve debated over and over whether I should publicly speak about this, so having said all of that, it’s still been quite harrowing to not be able to eat enough and just keep loosing weight, no matter how hard you try. I do feel more like myself, my joint pain isn’t quite as bad, but I so wish this could have happened healthily and naturally.

Now, we just hope that having the feeding tube goes smoothly and I can stabilize my weight… My PT and others have said I do not look a healthy weight, and I trust them, so as my strength returns perhaps I’ll gain a little again… Ideally in the form of muscle ((;

*** this was difficult to openly discus so please try and keep that in mind with anything you might have to say. And thank you to the (majority) who are always supportive and wonderful x

{I also apologise for the lack of finesse/clumsiness in my writing these days}

Android in Space. I’ve finally discovered a way to break the icy exterior of my Internist… Wear awesome space leggings. First time I think I’ve seen him smile. Thanks, Jeffie! Also, my Zak Smith shirt… One of my faves.