Update

Oh hey blog, long time no see.

I’m still working on a follow-up post to that last one. In the meantime, here’s what’s going on with me:

-Working with my urologist to see if my congenital kidney issue is in fact getting worse. After 2 imaging tests, it turns out it’s not getting worse…yet. Just another fun condition that I have to keep monitoring for the rest of my life and will possibly require surgery at some nebulous time in the future.

-Trying to find a mental health provider that is familiar with SPD/ASD in adults AND takes Medicaid (I anticipate this taking a while).

-Continuing with my occupational therapy for SPD.

-Working with my GP to find out if my sound sensitivity has a physical cause versus a neurological cause. Her preliminary diagnosis is Eustachian Tube Dysfunction (i.e. I have fluid buildup behind my eardrums), but a referral to an ENT/audiologist will give me some more details.

-Tutoring 3 students until the end of the school year, 2 in high school and 1 in middle school. Pay and hours are crap, but it pays the student loans and prevents the dreaded “resume gap”. And I guess it’s also good for experience in general. So, it’s something.

-Trying to incorporate all the changes my OT and I come up with consistently in every day life (transitioning into me cooking dinner instead of my fiance more often has been very helpful).

-Volunteering at my sensory processing therapy center and at the library.

-Job shadowing various PT/OT clinics and researching PT/OT graduate programs.

-Listing out other potential career choices, keeping in mind my sensory needs.

-Coming up with other activities that are productive (i.e. not Facebook) but don’t aggravate my physical issues (bye bye knitting, it was nice for the 15 years it lasted).

-Learning to advocate for my sensory needs in all variety of situations (such a constant, delicate balancing act).

-Joined the Autistic Gaming Initiative, despite knowing next to nothing about Twitch/streaming video games in general. The community has been very supportive so far, and even though it’s a learning curve to get started, it’s one that I’m looking forward to (I suppose caring greatly about the cause probably helps).

Most of the time, even though I know that I’m doing what’s best for me and my body, progress feels agonizingly slow. My OT says that this is actually a good thing. If I were to make sweeping, dramatic changes, it’s very likely that they wouldn’t stick long-term. That’s just not how the brain works. The key to making significant life changes as an adult with SPD is small, incremental steps. When I take the time to actually sit down and think about it, I really have made some tremendous progress. It’s just been over the last 3, 6, even 12 months. It’s easy to be blind to the progress we make when it happens slowly.

So, that’s where I am at the moment. Still feels like I’m on a crazy roller coaster about to be launched out of my seat any second, but at least I’ve ridden it a few times now so I know where the particularly wild sections are and can tighten my grip in those spots.

Update

Adventures in Therapy

Well, things went in an interesting direction at my therapy session last week. I mentioned previously that I was apprehensive that it would actually help me since I didn’t think therapies existed for my most pressing issues.

We started the session trying out some games in the Wii Fit Plus. I had tried some at home, and we also tried some new ones. Some of them were too easy, some too hard, but the important question of the day was, according to my therapist: “Was it fun?” It was a resounding no for all. Either they went too fast too early on and I couldn’t catch up, or had a time limit that made me too anxious, or they made sound out of the controller (IT’S NOT MORE IMMERSIVE, DAMMIT NINTENDO!).

On to Wii Sports, which I have played before. Kind of the same deal as the Fit Plus. Either it was too easy (boring), or the motion I was doing didn’t feel like it matched what was happening on the screen (frustrating). Not fun.

Changing gears a bit, we turned on the Xbox and tried some dance game. I was a little more hopeful for this one since I was a Dance Dance Revolution fiend back in the day, though I had to give it up when it started to put too much strain on my joints. While the Kinect gives you more freedom than a mat with arrows on it, there was one hitch: Since I have actual dance experience, I found it too simplistic. I kind of expected this, and I didn’t think that turning up the difficulty would have made it any more interesting to me. We attempted to try one last Zumba game, but the controls for the game were so hard to use that I gave up quickly (come on guys, motion control in moderation, see above for my opinion on its immersiveness).

I feel like I’m not physically strong enough to do the things I once found fun. I know what I was capable of in the past before all of my injuries, and I feel like I just need to grit my teeth and get through some serious training to get back there. It was about this point that we started talking about what I could do to try and find a fun, mild physical activity, because “it’s more likely that you’ll stick to it if it’s fun.”

Mentally, I said, “I haven’t found anything fun in a long time.”

Oooooh. Depression you sneaky bastard.

It was at this point that I mentioned that I really wanted to start dancing again, but that I wouldn’t be able to because of my auditory sensitivities. Dance studios are usually large rooms with hard surfaces that echo EVERYTHING, and the one adult class I tried to go to went way too fast. (I may have taken lessons for a decade, but it’s been over a decade since I quit, so I definitely need a refresher. Private lessons would probably be ideal, but HAHAHA who am I kidding, I have no income to pay for that).

Puzzled, she looked at me and said, “How did you take lessons for 10 years if the sound was too much for you?” I replied that I didn’t used to be this sensitive to noise, it’s only been the last few years that it’s gotten so bad that I can’t do most of the things I used to enjoy, musical endeavors included.

Ooooooh, also probably contributing to the depression.

“Oh,” she said. “You know, I’m taking a training course for our Sound Sensitivity therapy next week. I tried it already with one of the kids I work with, and it made a huge difference. It’s a 5 hour program, and you can do most of it at home.”

Oh hey. I didn’t even know therapy like that existed. And here I thought I’d be jumping out of my skin at ALL THE NOISES forever. I mean, there’s no guarantee that it’s going to work for me, but it at least gave me something to look forward to. I also made an appointment with my psychologist for next week, because depression is a sneaky bastard and I need some help untangling that mess. So yeah, feeling a tiny bit better about things this week…even though I still forgot 2 appointments last week.

Sigh. One thing at a time.

Adventures in Therapy

And Then I Have a Bad Week

After that last cracker of a post, would you believe I felt like doing nothing but crying most of the day last Monday? I mostly did just that, though while doing various things around the house that needed doing. Crying being one of them.

I’m teetering on the edge of the Overwhelmed Cliffs most of the time these days, but I don’t usually cry unless I topple over the edge. For me, crying comes at the end of a long chain of events and feelings that I don’t/can’t identify, and then there’s that final tiny push that’s just too much. In this case, I think the tiny push was completing my application to work as a page at the local library.

Now, I’ve worked in libraries before, in high school and college, and my mom’s a librarian who will be retiring next year with nearly 4 decades working in the same position. I think it will be a great fit for me at this point, as it’s part time and it will allow me the time I need to go to all of my medical appointments in the near future. It’s also moderate physical work, which works perfectly for me as sitting at a desk all day is equally as difficult as hard, physical labor (both of which I know from experience).

What I’m trying to say is, I’m no stranger to library work.

And yet it made me feel awful to fill out that application.

Okay, back up, try to identify the feelings that were happening before the tiny push. Go slowly, link by link.

Well, for one thing, HOLY CRAP I NEED AN INCOME BECAUSE I NEED TO PAY MEDICAL BILLS BUT I CAN’T WORK THE SAME TYPES OF JOBS AND HOURS THAT I USED TO BECAUSE OF SAID MEDICAL ISSUES AND MY FAMILY WON’T LET ME FREELOAD FOREVER AS THEY’RE FOND OF REMINDING ME WHEN I ASK FOR MONEY!

O…kay.

ALSO I NEED INSURANCE BUT CAN’T AFFORD OPEN MARKET OR GETTING MARRIED AND ADDING ME ON TO HUSBAND’S PLAN.

Well, on paper you’re a low-income single woman, so you’d probably qualify for Medicaid. You should fill out an application.

NEVER DONE THAT BEFORE, COMPLICATED GOVERNMENT PAPERWORK, WHAT IF I FILL IT OUT WRONG AND EVEN IF I DO GET APPROVED WILL I CONSTANTLY HAVE TO PROVE THAT I’M ELIGIBLE AND WHAT IF THEY THINK I’M LYING AND TAKE IT AWAY AND I KNOW SOME MEDICAL PROVIDERS WON’T TAKE IT AND WHAT IF I NEED TO FIND NEW DOCTORS WHEN I’VE ALREADY SPENT SO MUCH TIME AND EFFORT FINDING THESE DOCTORS THAT I LIKE AND WHAT IF-WHAT IF-WHAT IF-

Stop.

This is what catastrophizing looks like, and it’s so hard to explain to people. It’s often an invisible struggle, and putting it into words is hard to do without sounding whiny or just plain crazy. I know that some of those things won’t happen. I know that I just need to start the process and take things one step at a time. Knowing these things doesn’t negate the feelings slowly building up, link by link, until one little push is all it takes to crash to the bottom.

Neurotypical people do this too, but it often is not as disabling. Autistic/depressed people are more likely to fall off the catastrophe cliff due to our tendency to think in black-and-white (and also our tendency to perseverate on a single topic for extended periods). Developing the skills to overcome this takes time, effort, and probably some professional help. It’s not something that can be just willed away; you have to completely change your thought/emotional patterns.

For now, this is what I live with at least once per week. Until I can get a better handle on my sensory issues, which I’m hoping to hear about next week at my follow-up at STAR, the emotional/behavioral side of things will have to wait.

UPDATE: I started this post last week, and am just now getting around to publishing it. I have an appointment next week to take to a Health Care Assistant that specializes in finding health plans that are affordable and will cover unique needs, such as mine. From the brief phone conversation we had, it sounds like I’ll be on Medicaid for the time being (I did try to start the online process but CHRIST is it confusing). I also met with the OT at STAR for my SPD evaluation follow-up, and there were definitely some interesting things in it. Working on a post about it now, might have to break it up into a series (my first series-post??! That could be exciting).

And Then I Have a Bad Week