Dis/ability, Part One

And frankly, even if it is, you don't get the right to judge.

WHEW. What a stinking week this has been. First of all, maintaining multiple blogs isn't easy. While my other gig is mostly promotional work, I like to think it's just as important, because I'm helping grow my community AND raise awareness for some pretty rare diseases in the process. If you're curious what I get up to in my "downtime", check out the link HERE.

I shared the image above because it's one of my favorite Unchargeables designs (I own it on the most comfortable shirt ever and I rock it a LOT), and because it's also been on my mind pretty heavily over the course of the past week. Disability in general, that is - both my invisible challenges and my husband's visible ones.

It's been upwards of 100 degrees here in Abu Dhabi lately, at the start of May. It's ridiculously hot, and we've also had our fair share of sandstorms thrown in lately. Today, for instance, I can't currently see past the stadium outside our windows. The rest of the world simply doesn't exist.

Sandstorms don't typically make me that miserable, besides aggravating sinuses and allergies. The pressure changes and the wind are worse on Jon. For me, it's the heat. Heat causes my nerves, which are already experiencing difficulty thanks to damaged myelin, to transmit signals even less effectively. This slows my mobility, cognitive processes, and for some reason, gives me awful stomach cramps. I'm not sure of the mechanism behind the last one but it's definitely a fun new problem.

I recently completed my neuropsychological examination, a test designed to gauge where I'm at mentally, cognitively, and psychologically - more invisible factors of MS than the physical symptoms most doctors treat. I came out of it extremely well, even better than my therapist predicted I would do on some parts, and didn't really rack up any new diagnoses. We already knew I had depressive and anxiety disorders, both of which were probably in place long before the MS moved in, but both of which are complicated by a brain that's a little slow. I have problems with verbal working memory (if you tell me something I'm gonna have to ask you to repeat it several times most likely) and short term memory storage (rote memorization is NOT my friend). I also have cognitive difficulties when it comes to planning and a few other executive brain functions.

Long story short, I'll be attending Occupational Therapy when I come back from my summer visit to help suss some of this out, as well as build strength in my right hand/arm which does have some measurable weakness. I'm gonna have to train myself to be slightly more reliant on my left hand for things, which will be another fun challenge.

All of this is invisible disability. It doesn't get seen by the average person, and neither do my migraines or my neuropathic pain, both of which are thankfully well managed at the moment. That being said, on the outside, I look like a relatively healthy 29 year old woman, which means that any time I need/ask for disability help, it usually elicits at the least questioning looks and at the most, outright verbal prejudice/disbelief. It makes me super nervous for my upcoming travel, but fingers crossed that will go smoothly.

I thought having an invisible disability was hard enough to navigate, and then Darling Spork started having mobility issues. He's now on crutches 95% of the time, and on really bad days, he's in a chair.

You wanna talk about challenging? Try being disabled in a country that *technically* has accessibility, but in practice, is absolutely absurdly inaccessible. That is a whole other rant, however, and in the interest of keeping things in reasonable bite-sized posts, will be addressed in part two.

This Crazy Little Thing Called Life...

April has temps in AD already in the 90s, so I chopped off my hair.

Hello Bloggerverse!

So I'm reviving the blog, sort of. Everyone I meet tells me I'm hilarious and I should be writing. There are a few half written posts in my drafts, and I know everyone loves my travelogues, but I'm not going to focus on that anymore. Not entirely. Instead, I've just decided to turn it into a blog about life as a Spoonie (or Chargie, your preference) and the different challenges that come from that in different spheres.

What the heck is a Spoonie/Chargie?

Whelp, put simply, it's a person with a chronic illness. There are different schools of thought on how to describe this life to people who don't have these issues, hence the competing terms. I personally prefer Spoonie but I volunteer admin part time for The Unchargeables, the birthplace of the Chargie moniker. We're a pretty rad group of people, and working with this community has furthered my own personal growth leaps and bounds over the past couple of years, and the support I garner from them is immeasurable to me. I've now got best friends all over the world (granted, this also comes from living in Abu Dhabi) who even though we may not share the exact same illnesses, GET IT.

Trust me, it's really hard to GET IT until you GET IT. Something that, unfortunately, recently struck very close to home for my dear husband. My Dish that ran away with the Spoon has developed his own chronic illness, so now he's one of us, though he is bound and determined to be called a Spork.

Love that quirky guy. 💓

Jon broke his foot last October, and thanks to complications during healing, developed Complex Regional Pain Syndrome. The adjustment for us has been huge. He's a trooper for sure, but we're both learning we have limits to what we can and can't do now (since my process is pretty much ongoing). CRPS keeps him in pretty much constant agony - on the McGill pain scale, it's rated above labor without epidurals. I have no reference point for this but that seems pretty awful.

We relate pretty hardcore to this these days.

One of the things I recently started doing for myself is cooking (HA!!!). This goes hand in hand with my new, honest attempt to live a healthier lifestyle. Thanks to meds and general mismanagement (read: I love it too much) of food intake, I've gained a lot of weight over the past year and it's pretty much become a necessity that I lose it.

I started a strict ketogenic diet (combined with 16/8 intermittent fasting) three days ago and am already down ~ 4kg/8lbs. What's more, the ketogenic diet is keeping some of my more nefarious daily symptoms like neuropathic pain, headaches, and fatigue at a more manageable level. Diet is super important, y'all. Everyone always tells you that but it's one of those things I guess you just have to get for yourself? The best motivation always comes from within. Hands down.

So I said to myself, you drag yourself out of bed even on the worst days, live with chronic migraines, fatigue, limb numbness, etc etc, and you're STILL HERE - You can manage to live through a diet. So, damnit, I am.

Three days into this keto journey and I can tell you one thing - no one tells you that living healthier and cooking for yourself requires recipes that seem to be written for people who know what the heck they're doing in the kitchen. News Flash: I don't. I'm hopeless.

Also, being a Spoonie adds its own unique complications to this process. This past thanksgiving while assisting with turkeys, I burned my hand, and now have a pretty scar to tell the story. Over the past few days, I've popped myself with oil, grated my knuckle while zesting an orange, and dumped a little extra fish sauce into my stew because my hand spasmed while measuring. Food's turned out pretty decent though. I'm okay with any diet that gives me an excuse to keep tons of cheese and bacon around.

So that's the update - because my train of thought left the station about 20 minutes ago and I haven't seen it since. Hopefully I can keep this up on a semi-regular basis by remembering to post when I actually intend to, but I'm not promising a schedule, because I pretty much embody this little cutie here on a daily basis: