Spoons & Stripes

Like parts of me still hurt, cause that’s life with chronic pain, but it’s been five hours and the pain hasn’t worsened, it hasn’t risen sharply at any point, there haven’t been any moments where I just had to push they keyboard away and brace myself because I’m in so much pain I want to cry.

It is in fact, making me want to cry, because I don’t want to cry.

And I just finished two chapter rewrites, in five hours.

When I worked in the publishing house, which is nearly 7 years ago now, my standard speed was around 72 words per minute with 100% accuracy, which is pretty darn high. (For perspective, your average person gets between 38-40 words per minute with varying levels of accuracy.)

More recently, I’ve been lucky to break 30 words per minute, managing maybe 2-3 hours of work at a time before my fingers seize. Last week when I took this test, was a good day, and it was also at the start of my work day before I’d tired myself out.

[ID: an image of a green dinosaur with the words: You’re a T-Rex, nice! You type with the speed of 32wpm (145com). Your accuracy was 100%. Keep practicing!]

And I told myself, I told myself I’d wait a month, or at the very least a week because I told myself there’s no way the new desk would have such an immediate effect, or even an effect at all. The main priority of the new desk was to reduce my pain over all, not magically fix everything and turn me back into the person I was before.

But in the words of Our Great Lady, Carrie Fisher, instant gratification takes too long, and I retook the test, after—and this is important — after having just completed the first 8 hour work day I’ve done in quite literally years and:

[ID: an image of a purple octopus with the words: You’re an octopus, awesome! You type with the speed of 69wpm (307 cpm). You accuracy was 100%. Congratulations.]

“We believe wheelchair users should have access to the same styles and trends everyone else has, without ever having to compromise comfort.

Our clothing has signature cuts and styles to fit a seated body shape, falling and draping naturally without interfering with wheelchair mechanics. We use top-quality fabrics that look beautiful and feel luxurious.

Our Easy Zip Back option in coats is just one way that we’re making layering up and staying warm easier than ever. Discreet zippers in the back mean that Easy Zip Back coats separate into two individual pieces. 

Our signature ‘L-Shape’ means that IZ coats have the length you need over your lap while looking sleek and clean so you don’t sacrifice your style.”

The IZ Collection goes up to a 2X and has a wide range of masculine and feminine clothes.   

I looked up the brand and apparently the close in 2016 was temporary and they are coming back.

http://www.newmobility.com/2018/07/iz-adaptive-clothing-relaunches-and-expands/

They need to have holistic chronic illness clinics. You can go to them while you’re in a flare. They have low sensory rooms with soft beds and low light tv’s. Have doctors to administer flare reducing meds/pain meds, but also have holistic professionals like massage therapists, acupuncturist, mindfulness workers, etc etc.

Basically so that you’re entire body and mind can heal because the reality of this is mind and body health need to be aligned.

This is especially necessary because going to an ER for a flare can be so terrible and increase the intensity of the flare. It’s so bright and you have to wait for hours to be seen by doctors who let’s be honest don’t specialize in chronic illness, and are trying to jam in as many patients as they can because of being over capacity.

the type of place that EVERYWHERE you sit is incredibly comfortable. There’s places to lay down everywhere you look. Individual rooms if you just need to be alone, or communal spots with comfy daybeds to chill out in if you feel like being social and commiserating.

And of course, all I can think about is the food, all the good things I like that are soothing and comforting when life sucks.

[Image: a light-skinned person with a ponytail doing yoga in front of a sunset]

This article covers all the major muscle groups with a long list of instructional videos for you to pick and choose from to create your own personal workout.

Instead of just improving mobility, as many bedbound-specific exercises do, these are meant to build muscle and strength.

These exercises will also be great for POTsies and other folks who don’t do so well exercising upright.

For folks with tubes and tethers hanging off of them, clothing presents a bit of an issue. Enter INGA Wellbeing, a clothing line made specifically to help with this.

[Image: Several views of the reviewer in an INGA button-up in “dusty pink” over a patterned dress; it is a decently stylish, soft, somewhat slouchy overshirt, with holes for various lines and tubing in the seams, inner pockets, and an outer pocket too.]

For a small-run, quality custom clothing line, the pricing on INGA’s clothes is not half bad! The shirt pictured goes for £60 ($80), and they sell capsule wardrobes with a couple different items, too.

Even better, they are currently running a 50% off sale on Midnight Blue pieces, ending May 8th, 2018, and while supplies last.

This was a really enlightening read, and—as the article mentions–it applies to all sorts of health, not just bladder health. It’s the kind of nuanced stuff your doctor will never talk to you about, so be sure to give it a read.

Nobody loves to talk about this, but the truth is that many of us spoonies produce scents that we sure wish we could keep to ourselves!

If this is you, check out Shreddies’ washable and reusable garments that filter out your farts—allowing you to keep this particular aspect of your chronic illness to yourself.

Not ready to invest in specialty undies? Check out Subtle Butt, which has disposable and reusable liners. A little less coverage, but with more flexibility and a lower price point. Looks like you can find these at Walgreens and Walmart, among other places. [ETA: A reader recommends Flat-D inserts, also available in disposable and reusable]

THIS IS NOT A DRILL.

RAINBOW ATHLETIC TAPE.

WE REPEAT, THIS IS NOT A DRILL.

Take a few minutes in car before appointment to prepare an explanation for why you made the appointment plus 1-2 goals for what you would like to accomplish.

Example: I made this appointment bc I’ve noticed this specific worsening of symptoms, and my goal for this appointment is to discuss treatment options and start one if possible

I’ve seen a post about first time wheelchair users guide. Since I’ve been using a walking stick for a while now, I thought I’d make one specifically for these types of aids. These will be in no particular order– they’re just things you probably don’t know about using a walking stick.

- if you’ve hurt you left leg/ect., hold the stick in your right hand (if possible) and if you’ve hurt your right leg/ect., hold the stick in your left hand. Trust me, your shoulders and back will thank you

- the pad of your hand will hurt– it just will. You’ll get used to it and your hand will develop more protection there eventually. To start out, look into a pair of fingerless gloves. 

- a fold up/collapsable stick is good for beginners because you can take them on public transport/cars without too much hassle (they also fit nicely into desks and under chairs).

- When you’re using your stick, you only have one free hand. This may seem obvious, but it really impacts your every day life. Practice for a while around the house, so you get the feeling down.

-there are a lot of different types of walking sticks: fold up, one leg, two legs, three legs, etc. 

(these are only a few of the many designs)

-if possible, go to a shop that specifies in walking sticks. ask to try a few out, they will also help make sure that you’re using on that’s the right height for you.

- a height adjustable walking stick is a miracle, especially if you want to wear high heels to an event.

- you don’t need a prescription to get a stick in most regions (but in some cases they may help get a discount)

- getting a stick that is the right height for you if very important (even with an adjustable one). Too short, and you’ll hurt your shoulder. Too tall, and you can’t put weight on it properly. The correct height is when the highest part of the handle reaches your wrist when the stick is standing straight up, as shown in this image.

- if you’re young (under the age of 60) people will stare, often they wont mean to– it is annoying but you’ll get used to it. 

- again, if you’re young, people will ask why you’re using the stick, all. the. time. Even strangers will sometimes ask. You can use a really simple answer like “medical condition” and if they pry further, you can say “That’s all I’m comfortable saying”. If they don’t know you, or don’t know you well, they really have no business asking.

-Children will ask, a lot. Please be gentle with them, especially if they’re really little. I know it’s annoying but you can give children reallllllllly simple answers like “I just need it to help me walk” and most of the time they’ll be perfectly content with that and won’t ask more.

- don’t be afraid to use more advanced mobility aids if needed on bad days, or when readily available (eg. at a supermarket, when they have motorized wheelchairs for customers)

- You don’t have to use your stick every day for you to have a disability or for you to own a stick. Even if you need it once a week, once a month, you can still own one. You’re not less worthy or a mobility aid than those who need one everyday. 

-Use backpacks, the ones with 2 well-padded straps that go over your shoulders evenly. Use them as much as you can. Bags that you hold in one hand or have one strap make you unbalanced or take up your only free hand. 

- If you want to, decorate your stick, go all out. 

Do you mean physically or emotionally? 

PCS is definitely difficult … for me it’s one of my most disabling illnesses and it definitely has kept me from doing stuff I want to do. I definitely sympathize with whatever you’re going through bc it’s no fun! <3 

Some of the things I do to treat the actual illness/reduce symptoms:

I have a program on my computer that reminds me to take a one minute break every 9 minutes. I get up and walk around and look at far away objects … it actually reduces my symptoms a lot to take super frequent breaks. The app I use is called breaktime

I have special computer glasses that reduce glare & blue light and have a tiny +.25 reading prescription and I love them so much. I bought them online from felix grey

Also my who screen is tinted pink using an app called screen shades, but there are others that do the same

I did ocular therapy which helped a lot although I do need to go back again

I also did neurofeedback which uses an EEG to help you get your brain waves back to normal and that was really helpful, although again I had another concussion and lost some of the progress

I take breaks in between activities, and go to a dark, quiet, & comfortable place (my room normally), and just listen to a podcast or maybe a very low key video 

I avoid things that make my symptoms dramatically worse if possible — loud overstimulating places, watching videos with a lot of motion/perspective changes, watching videos on larger screens, etc

Cinnamon gum was weirdly the only thing that made me feel better/grounded when I was experiencing really bad vertigo so I stocked up on that

For the most part I just try to take breaks before I totally crash and avoid making things too much worse if possible

As for coping with my illness, 

I think the best thing you can try to do is live in the moment as much as possible. 

Don’t get caught up in thinking about what you used to be able to do, or what you think you should be able to do. I almost just pretend that things have always been this way and try to just find things that work for me now.

Make it a priority to find things that you enjoy that don’t trigger your symptoms too much. They might be different than they were before the concussion, but it’s important to look for them & make a point to add them to your day. 

The rules you are given when you are diagnosed with a concussion are normally really strict and don’t allow you to do basically anything. However, the science doesn’t really support this beyond the first 2 weeks (except things that physically put you at risk for another concussion). After 2 weeks, if something doesn’t cause symptoms you can definitely do it, and if it causes mild symptoms you can do it in moderation. I really believe part of healing involves not trashing your mental health by completely isolating yourself from everything and everyone in your life, and if that means bending some of the rules so be it! 

It helps me to remember that symptoms are just my bodies way of conveying information. I’m not being punished, and symptoms aren’t the same as emotions. It is possible to feel kind of crappy physically and still have a good time. 

I took my walker, Lucille, to the Ed Sheeran concert last night.

It was my first time using her in public, but it went SHOCKINGLY well.

Like… I honestly wasn’t excepting so much accessibility??

They put me through a special line at the metal detectors, and the security guard who searched me was incredibly kind and respectful.

The staff member who scanned our tickets told us how to get to the elevators without being asked.

The staff member in our section who was meant to direct us to our seats (which weren’t ADA, and I admittedly was concerned what I would do with the walker) automatically put us in some ADA seats, with enough room that I didn’t even have to fold Lucille up when we sat.

Most fellow crowd members were even super nice, and let us through the grid-lock of people waiting for the escalator so we could get to the elevators.

There were bathrooms EVERYWHERE (which, of course, is always a concern for me), and they were easy to maneuver through to get to the accessible stall.

We were in a high up section, but still had full view of the stage, and the screens were big enough and angled in ways that we could easily see everything.

It was just… it was honestly fucking amazing. I didn’t feel self-conscious, or like a hinderance, at all.

And of course, my body is still a wreck today. But having the walker definitely helped me last night. There’s no doubt in my mind I wouldn’t have lasted as long as I did without it (we waited at the back gate until about 1:30 in the morning to meet him. Unfortunately, he never came out, but it was still a lot of fun, and a nostalgic throwback to when I was healthy and used to do this kind of stuff all the time), and I’m sure I would feel even worse today if I hadn’t used it.

I feel like I’m kind of in shock from how well the whole experience went.

Here we will focus on accessible feminine clothing items.

Let’s start with bras. It’s no secret that many spoonies really struggle with bras. Many even give up bras as they find that they aren’t worth the hassle. So here are some alternate options that help with getting them on and/or comfort.

Front fastening bras:

Front fastening bras are much easier to get on and fasten for most. These are especially good for people with limited arm motion range. I have seen them use the traditional hook fastening as well as instead using a zipper.

Comfort bras:

The name says it all really. There are different types of comfort bras to suit your needs. Remember that you can buy a lot of different styles and designs that can look cute and/or sexy. A comfortable bra does not equal an ugly bra.

Wide shoulder straps disperse the weight of your breasts over a larger area, reducing pain. Wider straps also prevent the strap from digging into the skin.

No underwire. Underwires can be painful so it would suit may spoonies to avoid them. Instead look for alternatives. Without an underwire, the area under the breasts will be larger in order to give you support. Without the wire, it often looks like a band that goes all the way around your ribs. Thicker bands usually provide more support without compromising comfort (although this isn’t always the case 100%)

No fastening at all. Many comfort bras stay in place with the use of straps and elastic rather than wires and fastenings. These can take many forms but a simple and comfortable example looks similar to a tank top (but one that doesn’t cover your belly).

Padding or no padding? Either is an option!

Bralettes:

Bralettes are basically bras without any metal (and often padding too). They are considered very comfortable but not very supportive for people who really need it. They’re getting quite popular now and can have much more detail than regular bras which I know some spoonies would like. They are somewhat considered socially acceptable to be visible or even used as a loungewear top which is good for spoonies who struggle with heat. Thanks to  bouquetchildotn for reminding me of this. I was actually wearing just a bralette as I wrote this and thought that would remind me to include it :’)

Skirts: Skirts are good for anyone who struggles to reach their lower legs/feet. They are easier to place your feet into than trousers, and when you go to the toilet you can lift a skirt which saves you reaching for your ankles.

Dresses, jumpsuits, and playsuits: These things are great for many of us. They are a whole outfit in one. There are all sorts of types and fits. A loose/flowy fit is super easy to put on and doesn’t need to have any tight or constricting areas. You can have a thin fabric that keeps you super cool in the summer, and you can get thicker options for when the weather is cold.

Do you think I’ve missed something? Let me know!