My Weekend Brought to You by Team Ayu and the Supernatural Family

Current Mood:tired emoticon tired

Current Music: “Out of Control” by 浜崎あゆみ

I had a rare day of mental clarity and reduced pain yesterday, and, of course, I behaved as if everything was so perfectly normal because I felt so much better and overdid it running around doing ALL THE THINGS. It was my husband’s birthday, so I made cupcakes so we could celebrate with the kids in between finishing up some school assignments while my brain was in the right space to do so, then we got dressed up a bit and headed out for a dinner cruise he had surprised me with a reservation to a few weeks ago. It was a lovely, relaxing time, but once we were back in the car headed home, the familiar ache began to take hold in my hips, legs, and feet. What I’d give for one day doing remotely typical tasks without ending up in pain for it. I’m paying for it with mental exhaustion today more than with pain (back to it’s usual, constant baseline but not worsened as it can be after overdoing it on a good day), thankfully, but it’s still not loads of fun to deal with. I feel like I could sleep for the rest of the day, though I won’t, obviously, with children to homeschool and whatnot.

I’ve been trying to cheer myself up a bit by doing things related to special interests that had taken a bit of back seat in my efforts to fit in and be normal as an adult and mother. This is just the latest step in my journey of discovering the things I’ve done, or stopped doing, because of being autistic and how society, therefore, reacted to me before I was diagnosed. Ayumi Hamasaki (浜崎あゆみ) has been one of my favorite musical artists since high school, and this weekend I finally joined her official international fan club Team Ayu so I can get news on concerts and releases a little earlier and just enjoy having an opportunity to win things on her website and the access to her blog she keeps for the club. It seems such a silly thing for me to do, something I would’ve done as a teenager had the international option been a thing at the time, but it brings me so much joy just being a part of it. I even discovered that she will be performing in Okinawa next fall! I’m hoping to luck out and get tickets through the fan club when they go on sale. That would bring my grand total of Ayu concerts to two, which is more than I ever thought I’d be able to do as an American fan. Fingers crossed it works out for me to attend because it would be amazing to see her perform again and take Anya with me this time to experience it since she was too young to go along during the 2014 tour when I saw the 15th-anniversary show in Hiroshima. It would definitely give me something to look forward to when I’m having a bad health day and hating everything else about being stuck here on this island unable to do anything about my medical predicament.

I also splurged a little and did some shopping online at Hot Topic. (Good Lord, have I time-traveled back to my 15-year-old self this weekend, or what?) As Supernatural is going into its final season, they partnered with the retailer to produce a limited time t-shirt design to be sold for proceeds toward hurricane relief. It coincides with the official fandom holiday Supernatural Day, September 13th – the day the first episode ever aired. I never get to do any of this kind of stuff either because of time or money or because I believed society telling me it’s not a productive use of my time and energy. It feels so good to just not care about that anymore and embrace what I love! I’m so excited to get this shirt when it arrives because it’s a little piece of participating in the fandom lovingly dubbed the Supernatural family in real-time, as things were happening, instead of just watching from the sidelines, as I have for so many years, afraid to get as into it as I really wanted to because it would’ve been viewed as childish or useless. While I was already there doing some digital shopping, I decided on an impulse to get a dress that mimics the one Ariel wears during her time exploring the kingdom with Prince Eric in Disney’s The Little Mermaid and some glitzy Sailor Moon hair pins. It’s going feel like Christmas in the mail the day this all arrives.

I never do this stuff for myself, just for the kids, as we mothers are inclined to do. Don’t worry, my kids are still spoiled rotten with the things they love and time with me, but I’m not letting my own needs take a backseat to the point of neglect anymore. It’s a freeing feeling to be completely myself, regardless of what anyone else thinks, and my kids benefit from how much happier I am – they’re even getting into some of my interests with me! Anya has loved bonding with me over Sailor Moon binge sessions and old Disney Channel movies in recent months. Do the things you love, ya’ll! And don’t let anyone make you feel silly for it. I never will again.

To Be or Not to Be

Current Mood:anxious emoticon anxious

Current Music: Wake me up by 浜崎あゆみ

Despite the brain fog and chronic pain, I’ve been muddling my way through my grad school courses over the last few months. It’s getting more and more difficult to process the information and produce coherent assignments, which is all the more frightening because typically these things come so very easily to me. It’s like my brain doesn’t even work the same anymore. I’m in the middle of the fifth of twelve classes I have to take to complete the program. It’s a poetry course, and, thankfully, since I can write from a place of emotion and get a little more leeway on technique and academic work, I’ve been able to keep pushing forward. Even so, I lose points in places I don’t think I will, in places I never would have in the past.

I’m extremely nervous about moving into the next class in October. It’s a Shakespeare course, which normally I love so much and was so excited about registering for, but I already know that the materials will require a lot of the brain function I feel I have lost. I don’t know how I’m going to maintain the work required for analytical papers when I’m struggling to pen 10-line poems that meet course criteria now. I’m sure I can complete the classes, even if it means not getting a 4.0 GPA, but for me, the perfectionist and over-achiever, getting anything short of an A in the course is anxiety-inducing and causes me to feel like a failure, if for no other reason than knowing I’m normally capable of it without any worry at all, and it’s taking me days to accomplish what used to take minutes or at the most hours and yield better results. It feels like losing another piece of myself to whatever this is.

I can apply for disability accomodations through the university, but I don’t even know what to ask for. The paperwork requires a bunch of information from my doctors, who obviously are less than helpful already and weren’t the ones to diagnose me with Asperger’s, which is the route I would have to go in order to get the accommodations, even though it’s the mystery chronic illness that is causing me such difficulty. If I take a break now, not only am I unsure of the financial ramifications since I’m using loans to pay for this degree, but I’m also afraid that I won’t make it back if this condition continues to deteriorate my abilities.

As frustrating as it has been to be less physically capable because of how I feel, the loss of mental capacity is much more terrifying. My intellect has been such a large part of what makes me…me. Who am I if it is gone?

Heavy Thoughts from a Rough Morning

Current Mood:exhausted emoticon exhausted

Current Music: “Survivor” by 浜崎あゆみ

It feels so weird and yet so right to be blogging in a diary/journal format again. I held back from posting yesterday, still in the habit of posting snippets on Facebook instead. I’d really like to move away from that some, I think. Social media feels so fake and contrite these days. I’ll obviously still use it, posting Instagram photos and sharing memes and infographics; it’s what I do. But I’m glad to have a little extra space to sort my thoughts and type them out into the abyss, whether anyone else reads much of it or not.

I’m struggling a bit today. Whatever mysterious chronic malady plagues me is seriously affecting my day-to-day ability to function, some days worse than others. Today is one of the worse days. I woke up and had to stay in bed for about an hour, which has become pretty normal, but today my limbs felt especially achy and heavy. My head felt even foggier and groggier than typical; I ended up falling back asleep for a bit which is unusual for me. I’m finally able to get up and move around now, ignoring the constant pain in my arms, legs, hands, feet, hips, and back…basically my entire body. The brain fog is killing me, though. I made it through some reading with the kiddos, enough that they could move on to either playing or their independent work, depending on the kid. I have to rally at some point to make it through my own homework, as I have an assignment due this evening.

It’s really discouraging to know my options for getting medical help may be next to nothing. Right now, they just want me to take an SSRI (fluoxetine/Prozac) and wait for the referral to go through to see a mental health counselor on base. It’s pretty clear to me that they think my illness stems from anxiety and depression, rather than the other way around. Ironically, before my health started to degrade, I was in the best place mental health-wise that I’ve ever been in in my life – since I became a teenager, at the very least. I was feeling so sure of myself and ready to actually live instead of constantly worrying about society’s expectations or continuing to make myself small to please others. It was amazing. The physical problems took me by surprise and began to worsen exponentially about 6 months ago; I rarely have days where I feel remotely decent now. I’m always run down, in pain, and having trouble processing information that once came to me as easily as breathing. It’s infuriating that I’m being brushed off by the medical staff here, and it’s terrifying to feel like there is absolutely nothing I can do to stop the decline in my mental and physical abilities. We are not scheduled to move again for another year and a half, at least. I don’t know how I’m going to make it that long.

I’m afraid to even message my doctors and confess that I haven’t been taking the meds. (I insisted I wanted to be seeing a therapist first, but somehow they took that to mean I was cool with meds as long as I did eventually also see a counselor. By the end of that appointment, I was so beaten down and upset I couldn’t fight for myself anymore. I just nodded, smiled, and took the prescription home.) There are so many tests that haven’t been run that would make sense to try with my symptoms, but every time I go in suggesting something I feel like it just feeds their theories that I’m a hypochondriac. It’s a very trapped feeling to not be able to take control of my own health because doing so immediately makes doctors assume I am not actually in control of my faculties. This system is so horribly flawed, don’t even get me started. I’ve lost faith that I’ll ever get help, especially out here, and I’m worried about what that could mean. Suffering for at least the next couple of years. Worsening symptoms to the point of permanent damage. Or worse. I really just don’t know what to do, and it feels like there is absolutely nothing I can do. That’s where the anxiety is coming from; that’s why I’m getting depressed. Because they won’t actually help me. They can’t be bothered.

Moody Cats

Current Mood:accomplished emoticon accomplished

Trying to get my blog to format in an old-school way is proving trickier than I thought it would! Modern blogs are just designed differently due to the nature of their authors and readers, so I’m having to find a lot of ways to work around the standard formatting of WordPress themes and posts in order to get the job done. I spent the better part of today trying to get the option to add a current mood to my posts. First, I found a mood plugin. Then, I blatantly copied mood icons from LiveJournal (My old journal there was the inspiration for wanting mood icons!) and uploaded them here, painstakingly matching them up to moods within the settings of my new plugin. Well, the plugin is older, as it seems no one is interested in sharing their moods on blog posts these days, so then the option to add a mood was not showing up in the post editor no matter what I tried.

Finally, a simple Google search revealed that plugins exist to allow WordPress users to use the old, classic editor rather than the new, visual one. I figured, worth a shot. The mood plugin is from a timeframe when the old editor was used. Installed the editor plugin and…voila! Adorable little, gray kitten mood icons achieved! I’m so proud of myself right now, after years of not working with graphics and coding and web design issues. I used to be a pro at integrating whatever I wanted into existing blogging software and designs. It feels good to be me again. Now…if I could just get comment links to show up on the main page of recent entries, that would be an achievement, apparently. Ugh. Also, I should probably either design my own mood icons or find freeware ones that I’m not stealing like a digital cat burglar. I just wanted the nostalgia of these little guys! At least for a little while. They’re ridiculously adorable, right?

New Look, Old Vibes

Current Mood:nostalgic emoticon nostalgic

I’ve given the blog a bit of an update today. I used an image from an original Sailor Moon artbook drawn by the manga artist Naoko Takeuchi, graciously shared with the fandom via sailormusic.net. Lately, I’ve been feeling a lot of nostalgia for the era of the internet that I came of age in. The one that allowed me to learn HTML while crafting my own Sailor Moon fansites and blog all of my thoughts, from the most painful and deepest to the most shallow and superficial, in a digital world where everyone just seemed a lot more supportive; a community, at a time when I felt without one in my offline life. Back before blogs became businesses packaged in perfectly presented PR campaigns and design branding. That was never me, and for a while, I felt resigned to my fate to never blog again beyond what might fit that mold. So my posts grew sporadic and strained, with a forced polished smile in the tone and soft edges around the opinions presented.

Recently, I have felt pulled to enjoy more of the things I’ve loved in the past, those I had given up or those I had let fade into the background a bit in order to appear more grown up in a world that constantly told me that my autistic tendencies and special interests were wrong and childish. As I’ve grown more comfortable with who I am, I have given myself permission to be fully me, regardless of the societal connotations. Since when did caring about that do me much good, anyway? If I’m going to be a social pariah, I might as well surround myself with all of the things that bring me joy.

So here I am, ready to get back into blogging the old-fashioned way. As a journal of my thoughts and experiences. Sometimes there may be useful posts about our homeschool choices or autism acceptance. Others, it may be boring, rambling lists of things I accomplished with my day or ideas I’ve had – maybe even infodumps on my passions and favorite entertainment. Writing anything and everything down in this format was an integral part of my identity for many years, and I am not ashamed of anything I have to say.

I know some people won’t understand it or have any interest in following me on this new journey on an old path, but I hope that whatever you find here on this blog helps you in one way or another. That is the biggest reason I chronically over-share; because sometimes, that one snippet of my life could be making the difference in someone else’s, making them feel less alone in their struggles. Maybe they learn something or find a kindred spirit. Maybe they consider another point of view. Whatever the case may be, this is my new trajectory for this blog, and that being so, you can expect a lot more frequent posting about whatever strikes my fancy at the moment. This is my little corner of the world wide web, and I intend to use it.