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The Way Is Up - The Week in Review

27 May 2017

Friday week ago I pulled my back (ignored ‘Lifting 101′ and hoisted a pack of weights in an unbalanced position at work on the Thursday). I was okay at the time but shifted on the couch on Friday and…ping! I was annoyed of course but also didn’t care terribly because it rained incessantly all weekend, so resting with a hot pack wasn’t too much of an imposition.

Just as well I was okay for Monday because I had a very busy week. The Institute’s EP supervisor came down to my workplace to check protocols, which was good actually, because he saw for himself the need for changes in some areas. Nonetheless, having people observing you is never comfortable. It seems most staff at the Institute have conservative personalities - or they rein themselves in because that’s the culture - but being at a remote site, I can be myself and foster a happy environment.

I dragged myself out for some stair repeats on Wednesday - *groan* I was so slow! - and took another walk with The Husb and The Doggo on Thursday; it’s something. On Friday night The Girl and I went to watch Pole Queen 2017, an amateur competition which was lots of fun and very supportive of girls having a go. After a late night, we slept in and went out for breakfast, followed by a brisk walk at Perry Lakes, enjoying the trees and the birdlife.

That’s the good stuff, the silver lining of life. There is a black cloud too, boo. Aside from world events laying heavy on the collective psyche, my IBD continues to give me hell, but oh well, being attacked from the inside out is probably better than the reverse. Isn’t it?

I need to finish on a positive note, which is this: The breakfast pictured had finely-chopped onion mixed in with the tomato (not listed on the menu). Arrgh! The last thing I need is the additional diarrhoea and cramping pain that would cause! I started scraping it all out but the waitress kindly took it away and brought me a new one, sans onion. Nice service. Kudos #Hermosa.

Please Help My Friend Avoid Eviction

Lovies, babes, chronic illness friends, and my Ehlers-Danlos family - a dear friend of mine is in dire need of help in order to not be evicted from her home. I can vouch for her and her situation.

Donate via PayPal at mandolyn.orrell@gmail.com

She has EDS with cardiovascular involvement (cvEDS) as well as the standard hypermobility, pain, and dislocations. She was also just diagnosed last month with cervical cancer. She’s in the middle of several surgeries and facing possible chemo and radiation treatments if those don’t get it all. She’s also currently battling insurance for a power assist wheelchair, which they don’t want to cover.

She was illegally fired from her job last year for disclosing her EDS diagnosis, and is in the middle of several complaints and actions against the employer. In the meantime she’s driving for uber while looking for other work, but isn’t able to make ends meet on that alone. She is also raising her three nieces due to her sister’s death a few years ago from EDS related heart complications. Please help this family stay together in their home if you have anything to spare. I’d greatly appreciate any reblogs or sharing, especially among other chronic illness and disabled community blogs, even if you can’t spare $$$.

Donate via PayPal at mandolyn.orrell@gmail.com

So, I’m finally heading back home. Got a large suitcase, a guitar and a bag to drag along, as well as a headache and an empty stomach!

(Oh, the joy of traveling)

Hopefully I’ll be able to grab a bite to eat before the train leaves. See, I need to catch the last bus back to my hometown, which leaves at ridiculous early for a Saturday!

Anyway, I’m looking forward to see my cat, and to better be able to function in my day to day life :)

Ok, bye!

I graduated summa cum laude from engineering school this week! I also have a cool new job lined up in a new city where I’ll get to live with my boyfriend! Suck it illness!

I’ve been in chronic pain since 2009 (ndph) and have a fun set of mental illnesses to match (ocd, anxiety, depression). I’m sharing because I’m still kind of shocked that I made it this far!

Note: If anyone, including and especially yourself, tries to use this post to make you feel bad for things you have or haven’t accomplished, I will personally jump through your computer screen and scream very loudly at them until they stop! My achievements were made possible by my unique mix of abilities and disabilities, and all spoonies face their own struggles.

stomach still being a jerk. was able to keep down some coke a cola and oats though so that’s good. Smoothies have been okay still can’t have a lot of solid food though or anything mildly (or strongly ) acidic. seeing GI doc soon though ! joints have also been making it crazy hard to walk too. 

[ image description: a nonbinary mixed race person. Looking into the camera with a hand under their chin. you can see only shoulders up. the eyes are brown and the hair is reddish pink.]

Love and spoons

Tea drinkers read this!!!

If you buy pre-made herbal tea blends (usually have names like Bedtime, Calm, etc) check the ingredients. I just saw a Nighttime blend that had St. Johns Wort in it, which can be dangerous when mixed with some medications. Talk to you doctor what herbs you should avoid. (Especially when you want to ingest st. Johns wort or mugwort) 

 A simple hint to remember is just because its in a food store, doesn’t mean its safe. 

Executive Dysfunction

The more I find myself having to explain executive dysfunction to people the more I realise it’s near impossible. There’s a thing. I wanna do that thing, I really do. But no matter how hard I try to tell my brain to do the thing, it won’t do the thing. I can’t tell you the amount of hours I’ve spent scrolling mindlessly through social media wanting more than anything to stop, but I can’t.

This concept is so ridiculously alien to abled/neurotypical people and makes awareness/acceptance for it so hard to achieve. If an abled/nt person wants to, say, have a shower, or get some food, they just up and do it, no second thought. But the amount of mental exhaustion that goes into getting myself to get up and do one of those things can honestly be disabling in itself.

It’s not laziness, or not caring. It’s a total mental block between wanting something and doing something about it. I really wish the concept of this was more widely acknowledged. We are not lazy.

PSA for anyone who doesn't use a mobility aid

Pavements are not designed with mobility aids in mind. It’s not even as simply as lowered curbs - it’s also about gnarly bits in the middle of the pavement, and about finding the bit of (lowered or not) curb where you can actually get on, and about avoiding the boneshakers that just increase your pain levels.

I see it a fair bit that people refuse to get out of my way, or are simply unaware that the bit of pavement they’re on is the bit that actually has a lowered curb. I see people parking in front of lowered curbs. I even see kind souls trying to get out of my way and unwittingly blocking my only viable path.

Just look down. When you see us, look at the road surface and try to imagine where you’d like to be if your feet were wheels. Okay? And then don’t be there.

It’s not a big thing. It’s okay that you never realised. But it would take the onus off of us to ask you to get out of the way - which is nerve-wracking for those of us with anxiety, and potentially dangerous when we end up unable to just get onto the pavement after crossing the road.

It’d be a lovely low-key way to be an ally.

Cool? Cool.

It’s finally finished! I wanted to make this comic for the snap election, but if the Tories win I feel like it’s gonna be relevant for the next few years. 

I messaged a few of the spoonie blogs I follow to see if they would be okay with me tagging them in this. I got responses from @spooniediaries and @heyatleastitsnotcancer but I didn’t want to tag anyone else who hadn’t given me their consent.

Caption/script under the cut - please reblog and share. (Note: the captioning is reaaaaally long - it might crash your phone if you’re on mobile).

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I don’t know who the fuck is responsible for the sudden spike in popularity of these things are. These “fidget spinners” were meant to be for students who have sensory issues and/or attention problems in school. Two specific diagnoses that pop into mind are: autism and add/adhd, but these tools are NOT limited to just them. They were meant as a TOOL to aid these students in the classroom.

What sickens me is that advertisers are taking advantage of the clueless public (or are ignorant to the real purpose of these) trying to market these as the “cool, new toy that everyone wants!” NO! Unless your kid has actually been diagnosed with something where your doctor says this would benefit them, DO NOT GET THEM THIS!

Please, as someone in the mental illness community, I beg of you, DO NOT BUY THESE to be “just toys” for your kids. Unless your doctor has told you this would be a beneficial tool, DO NOT BUY THEM.