#gender fluid

On top of the world. Sort of.

{please don’t remove my words}

Okay, let’s try my first ever image description.

[image description: I’m turned to face the camera, sitting in my manual wheelchair on what appears to be a pier/look out with a futuristic cityscape behind. I’m relaxed, squinting and there’s harsh shadows because it’s a very sunny, very blue skied day]

Being non-binary/genderfluid doesn’t mean never being able to lean on the feminine end of the spectrum. Being non-binary or any similar gender or identity should not have to mean presenting as masculine-lite. More needs to be said about this.

For a family wedding today!

{please don’t remove my words}

(viahttps://www.youtube.com/watch?v=PnXK40smIjw)

A whole day in the life! I don’t know if I’ll ever do this again, but it was a really fun challenge to try vlogging for an entire day. It taught me a lot about trying to stay casual and conversational and not worry too much about ‘performing’.

Also, I loooove getting my head shaved! At least 1/3 of this video is my cat, hehe.

(viahttps://www.youtube.com/watch?v=4FfP425YQ3Q)

A new vlog! I might be getting the hang of this :D

Come see where I have been practicing my wheelchair skills for the past 6 months, and trying to increase my endurance!

I’ve been busy starting a new YouTube channel (more on that later!). Essentially, a large part of it is wanting to share my experience of the world but also to try and normalize disability! ( https://m.youtube.com/channel/UCnETew92-OPnj4w2S-03a0g)

Which brings me on to my point! I started a new tag! #DisabilityIsNormal I’m going to be using it on YouTube and all platforms I can get my grubby mitts on. Disabled friends, feel free to tag your photos, posts, videos, everything of you doing normal things, just the same as everyone else! Let’s normalize disability together. Let’s show the world we exist, from our own perspective, and we are people just like everyone else! Take up space in the world with me! Let’s make everyone else start to acknowledge that we exist and our experiences are real and valid.

{please don’t remove my words}

By the end of yesterday’s two hour shoot the muscle weakness I suffer from was manifesting clearly. In my face, in my feet that would not pick up from the floor, in my arms that shook as if 50lb weights were hanging from my wrists. I know I ‘overdid’ it when muscle weakness persists into the next day, as does the unignorable pain that indicates cellular dysfunction. Today I can barely move from where I sit to the bathroom when I need to go. I cannot sit upright without total support of my body, my limbs and my head. I’m unable to separate my arms or hands from my body as I type this; only my fingers themselves are mobile. The searing burn in my upper arms and hands as I haltingly and weakly stab across this tablet’s touch screen keyboard is deemed 'exercise intolerance’ in medical terms. I dislike this term and find it misleading. Most people would describe exercise as a workout, or at the very least a good paced walk for a few miles. But, as with many words, what have one meaning in common lexicon will have another entirely in medicine. 'Exercise intolerance’ is a broad term with much variance in application among disease processes. For me, it relates to the muscular and cellular dysfunction I experience.

Today, just 2-3 chews on soft bread or a hand to my neck to scratch elicits a lactate burn from the pits of hell in the deepest depths of the muscles that are trying to activate. Many will be familiar with a mild form of this burn: usually as a result from running too hard, too long, or really, too much of any intense exercise in too short a period of time. It is, after all, a natural process. Some even pride themselves on this burn; it’s an indication for them that they are working hard. Lactic acid is a byproduct resulting from mitochondrial cells (energy production cells) using alternate forms of fuel when the correct sources are depleted. It is backup processing. This waste product causes pain, but in nearly all human beings this lactic burn will resolve within a couple of minutes to an hour once the exercise is stopped. (Other forms of muscle pain are different and likely a result of small tears, so take longer to resolve).

As long as I’m able to remember I’ve experienced lactate burn from as little as good paced walking, any amount of running, or even any kind of yoga or other mild activity. Now, as my conditions have progressed, the fiery pain manifests from even the simplest of daily activities; brushing my teeth, cooking, walking even 100m, propelling my wheelchair. It can last for days if I don’t get the correct nutrition, hydration, have trouble getting enough oxygen, don’t sleep enough or deplete my energy stores too rapidly or for too long a time. This is the price I pay every day now. Related, but different is the muscle weakness; the only outwardly visible sign that anything is malfunctioning.

I’m utterly exhausted writing this. I have to rest, but I want to thank you all for the supportive comments, the messages, the love. I have a hard time replying consistently for obvious reasons, but I read everything and I thank you. For watching, for reading, for learning, for your support.

{please don’t remove my words}