We’ve also started a private group for spoonies and zebras with complex PTSD, but you must have both PTSD and a spoonie condition to join. I’ve built this group around the knowledge and PTSD complicates chronic illness and vice versa. It’s about how they interplay, as well as doing the work necessary for recovery. If you’re interested in doing group support and recovery work, drop us an email or pm on facebook. This is an invitation only group.
We try to offer something unique on each of these sites, so following us in multiple places is beneficial in most cases. Following us on social media also helps us to gain more followers and in turn, help more people! Please follow us on any sites you use. As always, thanks for your support!
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
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.
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.
And how about these?
Got them at the festival!
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.
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.
I’m thrilled to announce I will be adding video to the Zebra Pit, starting with this introductory video. While my blog of course has an about section, my videos will be posted on YouTube and sometimes also on Instagram, so I wanted to take the time to do an introduction video. It doesn’t cover much about who I am. More so it covers what we do here at the Zebra Pit and a basic overview of my main diagnoses.
I won’t be switching to vlogging exclusively, but will be using a combination of writing and video, depending on the subject and how I feel I can best present the information I want to convey. I’ve wanted to do this since I began my blog, but with heavy brain fog causing significant delays in my thought processes and ability to recall words combined with having to manage my spoons so carefully, it just didn’t seem feasible until now.
Ideally, many of my posts will be a combination of video and text. I hope this will make the content more interesting and easier to understand with certain concepts.
As usual, I welcome any input you may have about this video and the addition of video overall. Let me know what you think!
I just wanted to do a general update on how things are going now that I’ve been working for a month. It’s crazy how much things have changed already, but that’s life in spoonieland. If nothing else, things are always changing, be it good or bad. Luckily for me, things have been climbing like I’m a hot air balloon attendant rather than an Uber driver and I think I probably have PQQ to thank for that. Without my protocol, I’d still be laying in my bed moaning to myself and contemplating how to exit this world as painlessly as possible still. Thank goodness those days are behind me and I’m going to work hard to keep them there, though I’m pragmatic and understand that with an Ehlers-Danlos body, I only get so many choices. Still, there are many choices to make and I’m dedicated to controlling as much of this disease as it will allow.
In the energy department, I couldn’t be happier. It seems I only continue to gather more weekly. Sometime last week I realized that I was spending a lot of my time fearing something that just wasn’t happening anymore and it was time to unclench and enjoy my life a little more. Post-exertional malaise has taken a vacation and I can comfortably get to work without that bastard staring over my shoulder. I actually wake up every morning feeling fully recharged and ready to take on my day, pain be damned.
Even my pain levels are fairly low. Yes, I’m still fighting with headaches, but they’re minor compared to the severe migraines I was fighting with for years that included unbearable bouts of nausea, vomiting, auras, light and sound sensitivity that had me locked away from the world for weeks at a time. I’m also still dealing with near daily subluxations and the sore tendons, ligaments and muscles they leave behind, but that’s nothing in comparison to the years of agonizing muscle spasms and myofascial adhesions that left my entire body wracked with searing pain for years. Some days, I don’t even have to take any pain meds at all. Others, it’s as simple as taking a few tylenol and a muscle relaxer or applying a topical here and there. Life is pretty sweet, really.
I’m just a bit overwhelmed trying to deal with all the change. I feel wonderful, but I’m having a bit of a hard time keeping up. I don’t trust this new world order. I’m constantly looking over my shoulder, waiting for that infamous other shoe. I’m afraid to increase my work hours and use my SGA only to fall ill. I fear increasing my exercise and costing myself a day or work, even though what I do is mostly sedentary, because like it or not, the mental exertion costs my body almost as much as physical exertion.
And then there’s what I want to do versus what is best for me to do. Like I love the great outdoors, specifically the mountains and the woods and hiking trails, but the worst thing I can do for both my joints and my osteoarthritis are jarring activities. I should stick to my recumbent bike and walking at the mall, but I want to be hitting the trails at Red River Gorge and drinking in all the gorgeous fall color. Luckily, I found a bit of a compromise in a few trails that are mostly flat and somewhat paved combined with some drive up lookouts, so my husband and I drove down on Sunday to check them out.
What amazing beauty. It was the first time in 10 years we were able to visit and we did very well on the trails we chose, always turning back when the trails began to dip too much for my safety. I came home with only one minor subluxation and a hip jamb that didn’t even hurt the next day, a little knee pain and only the slightest post-exertional payback the next day. I am elated that our hiking attempt was a success and I now know that I can do a couple of miles so long as I refer to guides and follow the rules I’ve created for myself closely. This disease is all about compromise and when you really love doing something, you have to find a way to make it work.
Hopefully I will soon find time to turn one of these treasured shots into a painting. This is honestly one of my frustrations, however. Having time to do the newfound things that I love. I began painting when I was housebound and needed an outlet for creative expression that didn’t require the use of the speech centers in my brain. They require an immense amount of time that I no longer have, though. I can’t even seem to keep up with the housework and I’m only working 3 days a week. While I no longer require full days of rest in bed, I still need my daily rest breaks of kicking back and staring at a little mindless television while giving my body a rest in my recliner. Also, because my joints are so unstable, I don’t dare rush through physical tasks of any kind. Everything takes so much more time than it did before I became ill. I feel like a turtle in a rat race. I can’t even keep up with my beloved blog, though I try!
One day at a time, one step at a time. I’m so amazed by all that I’ve recovered, I won’t be surprised if the complaints I’ve listed here today are things I will be celebrating a victory over somewhere down the line. But even if I don’t, I can’t complain. I’ve come so far from where I was and I’m proud of myself for taking the many steps required to get here. I’m finally in a place where thinking about the future isn’t such a scary thing. In fact, I view it with relish and find myself making many plans for my future alongside my husband. It’s a much different worldview than I’ve possessed in many years and it has me shouting from the mountaintops to be counted in this life.
As things continue to change for me and begin to affect The Zebra Pit and my regular posting schedule, I wanted to provide an update about what’s been going on with me, my current goals for the blog and where I see the future headed.
First, I’m thrilled and oh so grateful to report that my health continues to improve. I’ve been enjoying an increasing amount of energy, fewer symptoms with much less severity and significantly less brain fog for some time now. After writing about acytl-l carnitine a couple of weeks ago, I decided to take my dose back up to 2g per day and this increased my energy even more. I also added PQQ just two weeks ago and I can feel myself making greater strides mentally and physically with this combination of changes.
A New Life for Capricious
Over the last few weeks, I’ve been purposely pushing myself just to see how much I can withstand, going from dawn until 9 or 10 at night on creative projects, blog posts, exercise and blasting, shopping, housekeeping, the occasional bit of fun and *drumroll, please* organizing a job search. That’s right. This zebra’s going back to work.
It’s a wonderfully exciting thing to contemplate. Like most people, I had a lot of goals and dreams when I fell ill. My career was completely derailed, my writing career put on hold. I lost my home and my chance to bear children. I can never have some of those things back, but with my newfound health and vitality, I’m beginning to think that my professional goals need not be one of them. We take a lot of pride in our accomplishments and I’m no exception to that.
It’s also no secret that what you earn on disability insurance isn’t nearly enough to live on, so it will make my life easier, from being able to afford a better place to live to making some of the alternative treatments I’ve been missing out on more possible, as well as the possible surgeries I may yet have to undergo.
It’s a scary thing to contemplate, as well. I’ve been on SSDI since February of 2013 and I haven’t worked aside from a couple of work from home opportunities since 2008, one of which turned out to be incredibly challenging due to my fatigue, the amount of brain fog and the relentless nature of my migraines. Every time I have attempted to even begin searching for a job since then, I have suffered post-extertional malaise for my efforts and I end up sicker than I was before.
This time I really took my time before making this decision. Actually, I wanted to wait even longer, but our financial situation is such that it motivated me to pull the trigger a little sooner. I don’t think that’s turning out to be a bad thing. My trial period is going quite well. Today is the first “day off” I’ve really taken in weeks due to health issues and it was more of a precaution than a demand. Still, it’s possible I will begin working and the toll on my body will add up quickly. There’s no way to know until I try. Luckily Social Security has some great programs that allow me to take those chances. Failure won’t be catastrophic. It’ll just be damned disappointing. Even if it makes a significant impact on my health and where it stands today, I know I’ve built the tools I need to succeed if that happens, along with a long list of doctors I can now call on for help.
Recently, I’ve managed to write some pretty darn good poetry and that really feels great. I’d like to try my hand at some complex creative work, as well. Naturally, now that I’m writing again and have recovered enough of my self-esteem to have my imposter syndrome down to a simmer, I would also like to begin submitting some of that work for publication. It too is a task that is equal parts excitement and fear, but certainly the emotional coaster ride. I haven’t had anything published since 2012. It would be great to get my name back out there. Unfortunately, unless you’re a Stephen King type person, it’s nearly impossible to make a living off of creative writing though, so find a job I must and I feel like I will enjoy doing so if I can find something in any way related to writing.
It’s all a lot to manage, but if I pace myself and use my energy wisely, it can be done. It may take me a while to find a job, though I’m getting a great response to my resume. I’ll be using that time to my advantage as much as possible.
What’s Next for The Zebra Pit
As I go through all this wonderful scariness, I will be sharing it all with you here in the Zebra Pit, just in case you too find yourself ready to embrace working after developing your own protocol and find you too are in the position of going back to work after long term disability. I plan on discussing SSIs Ticket to Work program, the Trial Work Period (TWP), Work Incentive Planning Assistance (WIPA) programs, and things like Substantial Gainful Activity (SGA), so you have some idea of what to expect. Expect some of this information to begin showing up as early as next week.
I also plan on talking about practical things like what to put on your resume, how to handle awkward questions during interviews and how to handle special accommodation requests as I go about navigating these things myself.
I also plan on continuing the discussion on health and wellness, which will always be a top priority for me. How can I work and function well without all of the things that keep me healthy? As I begin working some of these things will likely need to be adapted or modified, as well. I will no longer have the luxury of time, but I will have more money to pay for services, so hopefully that balances out and I will have more advice to offer on a wide variety of available treatments.
Some of the upcoming topics I have planned for the Pit are to finish comprehensive articles on each substance I use to maintain a healthier, relatively pain-free life. I also want to write a comprehensive guide to FasciaBlasting for EDSers and Spoonies. The more I get to learn about the broad populations finding relief with this tool, the more I want to get the word out about the product and its benefits.
Finally, I also plan to begin sinking a little money into The Zebra Pit to make it a higher quality blog with better content and to start driving more traffic here. I think we offer some quality advice and would like to see it help more people while also having the opportunity to make a little money through advertising while keeping my content free to subscribers. I’d like to add additional contributors with their own ideas and content, so if anyone is interested in sharing their wisdom, shoot me an email on the contact page.