Capricious’ Big Gay Day Out

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This is me and Mr. Lestrange (if I’m Capricious, let’s call him Steadfast Lestrange), showing off our rainbow colors at Cincinnati Pride yesterday. Yes, that’s me, without a mask, outdoors in June! How did I get away with that? Why, with careful planning, some success and a little failure, of course.

Sexuality and Gender as a Spectrum

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First, I don’t know that I’ve mentioned before that I’m pansexual or if I have it’s been as a footnote so I’d like to take a moment to talk about it. In case you aren’t familiar with it, pansexuals are attracted to spirit over body. Pansexuals can be attracted to cisgender people, trans people and everything in between, which is what sets us apart from bisexuals. It doesn’t make us better, just different. When I first came out, I don’t even think the term existed, but I adopted it as soon as it did. It was like finally finding skin that fit just right.

I’m by no means ashamed or anything. It’s quite the opposite, as I’m always more than happy to let my freak flag fly (and yes, unlike Nola Darling, freak is a term with which I’m happy to label myself, but you aren’t allowed to direct it toward me if you’re going to hurl it like an insult, much like the word dyke). I came out of the closet so long ago that I sometimes forget just how important queer activism still is. I’ve also felt ostracized by the queer (primarily lesbian) community for falling in love with a cisgender pansexual man and participating in what appears to be a heteronormative relationship to the casual outside observer. Naturally, I found myself distanced from the community for that reason. There’s a long, tired history of people at either end of Kinsey’s scale for sexual attraction/orientation judging those of us whose attractions fall somewhere in the middle and largely unless we’re with same sex and/or gender queer/trans people, historically we’ve gotten shunned by the L and G in the alphabet soup of sexuality. While trans people have also had a terribly difficult time of gaining acceptance on both sides, I feel like they’ve made more headway in recent years and somehow it’s those of us who straddle the entire spectrum that will be fighting on the last frontiers of acceptance, but I’ll spare you on the college lecture of why that is. I have a degree in Women, gender and sexuality studies. I could go on forever.

When you have the zebra trifecta and have largely been ostracized by the community for which you’d be doing activism, you don’t really feel inclined to use up your precious spoons to go and march for a place at the table in it. Therefore, it’s been 14 years since I’ve been to a pride event. I’m happy to report that 14 years has brought about some change and much more inclusion for everyone on the spectrum and I have to think millenials have everything to do with that, so bless you millenials and bless you to the Xers who mostly raised them. We felt included and have the merch to prove it, lol.

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Candles not included (LOL). The trans flag is for my niephew who recently came out. at 10. I’m so proud of his bravery!
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Since we’re on the subject, I painted this for my niephew Tom when he came out. I wanted to give him something that reminds him he always has an ally in the family. He is the only family member still in my life.

Preparing to go to Pride

When we began talking about going to Pride, I started watching the weather and the pollen reports. I didn’t want to go if I had to wear a mask and it was too hot outside. We caught a big break, where it rained in the morning, bringing pollen counts way down and providing much cooler temps (high of 77f). We immediately ruled out marching in the parade, as despite the fact that I’m now doing 90 minute workouts and have much more energy, POTS can still make staying on my feet for long periods a little tricky. Standing around and waiting is the worst and you’d be surprised how much you end up doing that at a “march.”

So with that in mind, we opted to go later in the day to enjoy the festival activities. I wore loose, comfortable clothing that covered most of me and my compression socks. Attire is very important when you’re a Masto-Zebra-POTSie. I need to keep most of my skin covered because I am intolerant to UV light. I need to try to stay cool because I have heat intolerance and loose clothing helps a bit, and I need to keep my blood volume up, so the compression socks help. I also wore well-fitting, supportive athletic shoes, which of course are always a must for every zebra. Like most, I have very flexible feet, both of my arches are collapsing, I have morton’s toes, weak ankles that sometimes collapse and there are dozens of tiny bones in your feet that are all too happy to sublux at any given moment.

I made sure my pill case was filled not only with my regular daily meds, but also rescue meds, CBD oil and advil, all of which I ended up relying on heavily. I also took my mask, sunglasses, oral rehydration salts I could add to water if I needed, eye drops and nasal spray. Boy was I glad to have them all.

When I woke up that morning, I was already reacting to something. I ran out of herb, which I usually vape, so my husband picked me up some hemp derived CBD oil on the fly to try to help get me through. Since I started taking it the night before, we suspect it had something in it that was making me react. Maybe I can’t tolerate hemp oil, who knows. I woke up with dermatagraphia and some flushing. I also found the CBD oil, while effective for pain relief, did little to nothing to help me sleep, so I got a whopping 4.5 hours of sleep the night before, too. The morning was bad for the tummy, too. Right after breakfast, I had to run for the bathroom and then again every 15 minutes or so. It was as if I’d drunk prep for a colonoscopy. This created a bit of anxiety about the odds of me lasting very long.

I took more CBD oil in the morning (I didn’t realize it was probably the oil until later in the day) so by the time we got downtown, I was a pretty good ball of itch and had to get around 75 mg of benedryl in me before I really got things calmed down.

Attending the Festival

As I’ve mentioned before, we live in the northern most part of Kentucky which borders the Ohio River with Cincinnati just on the other side. As the crow flies, downtown is 11 miles from our house, but they seem like two different worlds. We knew parking would be a nightmare right around the event with both Pride and a Reds game and every other regular Saturday activity competing and pricing was as high as $60 to park. We opted to do what smart Kentuckians do and parked on the Kentucky side in Newport for $5, then took the Purple People Bridge across to Cincinnati, which is a half mile walk.

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Behind these two rainbow warriors is the Purple People Bridge, which is starting to look a bit more gray than purple these days! And check out that shirt. Awesome isn’t it?

My first problematic encounter came in the parking garage at the Levee. There was a woman at the elevators who had absolutely bathed in her perfume and I literally ran away from her so I could strap my mask on my face before I went back. Crossing over the bridge was more of the same and I was quickly reminded how much queer boys love their cologne. We had to stop at the beginning of our bridge trek because of tachycardia, but once I got my heart back to normal, it behaved pretty well the remainder of the way.

By the time my Benadryl fully kicked in, I was actually doing pretty well. The pride festival is held in a large riverside park called Sawyer Point Park and Yeatman’s Cove. It probably spans around 2 miles in length. We walked it twice, browsing booths, eating and shopping. So long as I stuck to a reasonable pace, my heart stayed within regular limits. I only needed to sit down 3 or 4 times in the 5 hours (holy shit! 5 hours!!!) we were there.

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The Festival west of the Purple People Bridge as things are winding down. It ran the entire length of the Serpentine Wall in this direction.
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A small portion of the festival on the east side of the Bridge, which continues beyond the trees in the background.

I ate things I’m not supposed to eat. We split a pretzel, which of course has yeast, but at least I skipped the cheese and/or mustard to go with it. We had gyros with both tomato and tzatziki and we bought a funnel cake, but we were both so worried about what we were doing to ourselves that we just picked at it a little and threw it away.

Around 3.5 hours in, my Morton’s toe on my left foot started screaming. I don’t know if something subluxed or it was just cramping or what, but I developed a pretty good limp and was grateful to finally find a curb where I could stretch it out.

By the time we decided to leave, we were both pretty exhausted, but I was determined to walk the bridge back instead of ordering an Uber. Again, I was hit with tachycardia at the beginning of the bridge, this time because of the incline, and we chose to sit at some conveniently located benches. We made it the rest of the way without too many problems.

The Gift that Keeps on Giving

As is true of most zebras, what we get away with first will usually come back to haunt us later. I wasn’t at all surprised how my body turned on me last night, despite keeping up all the meds. I was sitting there watching TV and got hit with a sudden wave of nausea. I went running for the bathroom and realized I could barely walk, so severe had the pain in my foot grown. My neck turned beet red when my husband showed no signs whatsoever of having been out all day. Mental note, next time wear a sun hat, even if it looks stupid.

Apparently, I spent so much time scratching in my sleep that my nails were worn down and reshaped when I woke up this morning! Some other lovely morning side effects included eyes that were a little itchy and hands and feet that look like sausages along with some bone pain, joint pain, dizziness, and a little dermatographia. All told, I’m really in pretty decent shape. I mean, really I would have loved to wake up in this good of shape anytime over the previous ten years.

Breaking It All Down

This level of success can only mean the quercetin complex and other meds I’m taking are doing a bang up job of healing my body and I’m finally learning how to proactively plan and control my MCAS (a post is in the works on these supplements). Compare it to last year’s attempt to enjoy a festival in this blog post, When Oompa Loompa Sat on a Hill (it’s amazing to consider how naive I was at the time. I didn’t even realize most of those symptoms had anything to do with MCAS). Had I attempted any such thing even two months ago, I’d have lasted a third of the time and I’d still be lying in bed right now with terrible head pain and running to the bathroom every 30 minutes debating which end to present to the toilet first. My pain levels would be completely out of control, I probably would have woken with something out of joint, my eyes glued shut and would have had to deal with an anaphylactic reaction at some point during the night. This, frankly is a real treat.

Would I want to treat my body like this every day? Absolutely not, but it’s nice to know that I don’t have to be a prisoner in my own home 365 days a year and can get away with the occasional special day out without restriction. I know within a few days, I’ll be fully recovered from this rather than weeks. That means it won’t cost me a week or two of strengthening and exercise, setting me back months. Hopefully it won’t be paying too long term of a price with my tummy. I regret nothing at this point.

We all have to find our balance and decide for ourselves what’s acceptable and what we’re willing to risk for some temporary freedom; a day to do what we really want. What price is too high to pay for a little freedom? At this level, the trade off is quite worth it to me, while for some it may not be. Inside or outside of the community, it’s not our place to judge what’s right for each other, just like in the LGBTQIPG community. It’s our job to support each other and be good to one another, at least if you want to have friends and have those things yourself. As humans, we are critical by nature, we make comparisons automatically, a trait which helps to keep us safe. Acting on those critiques, speaking rudely against other’s decisions, those are things we can resist. Opting instead to be sympathetic and supportive when we screw up and bite off more than we can chew and cheering us on when we succeed; those are choices we can all easily make.

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Try These Apps for Glare Sensitivity

sunglasses-emoji-png-transparent-imagef.lux and Twilight are apps that allow you to adjust the brightness of your computer or cellphone screens, not only by dimming them, but by giving them a rosy glow; effectively taking the sting out of any screen by eliminating the painful bright whites that are so glaring. After installing f.lux on my computer, I’ve been able to significantly increase my computer time without increasing any of my symptoms or disturbing my sleep patterns.

That’s not all these apps are good for. f.lux and Twilight were created to dim your computer or smartphone at night to prevent the disruption of your natural circadian rhythms. f.lux, which I’m using on my computer now, can even dim it gradually with sunset so it happens naturally. I’m not certain about twilight as I haven’t tried it out, yet. What this function does is to help you return to your natural circadian rhythms, which can easily be upset by bright light, possibly aiding in better, more restorative sleep and a calmer nervous system.

You can also adjust your daytime screen to any level of softness that works for you. I use a slightly rosy glow for daytime and let it dim significantly at night, sometimes making adjustments when working on images to ensure I have full resolution. It’s easy to make adjustments or disable it temporarily.

With both the reduction in migraine inducing glare and the added benefit of working to enhance circadian rhythms rather than the usual disruption screen glare can cause, programs like these could be a big win for any spoonie who suffers from migraines, glare sensitivity, and sleep issues. Both of these apps are free. You can find Twilight here or in the app store on your android phone and f.lux offers free downloads here for your computer. Upon searching there appear to be others, as well. If one doesn’t work well for your needs, you can always try another. It definitely beats turning your brightness all the way down and wearing sunglasses!

 

 

New Shower Chair in Town

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Not having a walk/roll in shower, I have searched long and hard for a shower chair that will accommodate a traditional shower/bath combo. I finally found it! The Spa Seat Shower Stool goes for $37.99 (-5% if you use your target credit or debit card). It will hold 265 lbs and is designed to fit even the smallest tub, unlike the bench style seats because it has a sturdy 3 legged metal design with slip resistant feet that hold it in place. It even came fully assembled.

With The Spa Seat, you can use it in an apartment or without the expensive upgrades to your bathroom. You can use it throughout your shower, as a foot stool to prop up your legs to shave, or to take short breaks during any portion of your shower. It’s compact enough, there’s room enough for you to stand while it’s in there with you. You can’t really lounge on it per se, but you can’t so much even in the backed version of the other shower chair. They just aren’t that comfortable no matter how many bells and whistles they come with. It is good and sturdy though and I feel quite comfortable scrubbing away perched on the Spa Seat.

It works really well if you have orthostatic intolerance issues, as standing in one place under a fountain of hot water is about the worst thing you can do if you have POTS, NMH or another common blood pressure or blood volume issue. Not only are these two things a problem, add in raising your arms over your head for a good shampooing and you’re just asking for disaster to strike.

The drawback? It’s not quite as stable and secure as the traditional bench seat, so it’s not going to be the right shower stool for every disabled person.  The bench style seats come in several models including a version that comes with a back and arm rests and a heavy duty version for people up to 450 lbs, providing added security for people of size and people who have stability/mobility issues. However, the bench style seat won’t fit a traditional bathtub or bath/shower combo at all.

For those who still have decent mobility and fairly good stability, this seat will work just fine. For me, since I’ve never had a shower that will accommodate the other type of chair and we rent, I’ve been stuck taking baths for the last two years almost exclusively. Some days I still won’t be able to sit up on this chair because I simply won’t have the energy it requires. When I do, it will give me the freedom to shower instead of bathe, do additional treatments on my hair I can’t do in the bath, and save me from sitting on the hard tub floor when my back or hips hurt.

My only concern with the product itself is how long it will last. While it seems to be of good quality materials and construction, it seems to me it would have been wise from an engineering standpoint to add in some crossbars for added support to ensure a long life of the product, but I guess if I have to replace it every couple of years, at $38 it won’t break the bank. Other than that, I think they’ve come up with a pretty great product and I’m happy to share it with you here on DD, as I am trying to do with all the neat stuff I find that helps make my life a little easier.

Now to find a detachable shower head to go with it!

Winners: Ease CFS Helper App

Thanks to everyone who entered to win an Ease CFS Helper App download and those who helped to get the word out!  Without further ado, here are our contest winners by twitter handle:

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@petitionSFCEM

@lissiebeachgirl

@painactivist

@Eramys

@MelaniesJourney

 

I will contact each winner via twitter direct message with a code redeemable for one free copy of the Ease CFS Helper App.

I had a lot of fun getting to know some new people, making a few friends and learning about this spiffy new app made by another #pwME. I hope the winners enjoy it and will come back to let us know what they think and how it’s benefiting their lives.

I hope you’ll all keep coming back and if anyone else has a new app, gadget or gizmo they want to feature on the Disability Depot, I’d be happy to do this again 🙂 Just shoot me a note on our contact form, direct message me on twitter @caplestrange, or come visit the @disabilitydepotblog community on FB! 🙂

 

The Sophistication of the Ease ME/CFS Helper App

zxhHi8wQAs I mentioned on the contest page, the Ease CFS Helper App was created by a person with ME/CFS, so I asked him what he felt was the best and most original feature in his app and what set it apart from the other apps already on the market. Boy am I glad I did! I was a bit blown away by the answer, which revealed a level of sophistication I really didn’t expect. It also highlights just how keenly he understands the ways and means of mitochondrial energy deficits:

A great feature of the app is being able to save locations based on the impact they have on your energy levels. For example, I spend most of my time at home or at work. The first time I am at each of these locations I save them as restful and demanding, respectively.  Once the location impacts have been saved as such the app will automatically increase my ‘spoons’ while I am at home and automatically decrease them while I am at work. The app also automatically decreases them when I am travelling in between saved locations. Even without logging anything the app is already counting my ‘spoons’ based on how I spend my day. This is great because let’s be honest it’s nice to free yourself from having to record your every move – especially on a bad day.

Having to micro-manage my energy is actually the reason I have only looked at using one of these apps and have never actually done it. It always sounded like it would take up as much of my energy to use it as the help it would provide. Knowing Ease only requires initial setup for my usual locations with their usual activities, now that sounds very doable for this cranky ME/CFS and FM pickled brain! Clearly, this app and it’s programmer get spoonie life 🙂

If you haven’t entered to win a free download of this app yet, be sure to here! There are many other wonderful, helpful features waiting to help get you back to the life you loved. You have until Friday, July 15th. Good luck!

To buy or learn more about the app, go here.