Great Expectations?

 

 

I feel like I’ve hit a bit of a wall lately when it comes to contributing to my community. It’s not that I don’t want to participate. It’s more like every time I try to, I freeze. This isn’t exactly surprising for me, and I’ll tell you why. We all know about the Fight of Flight response. What they don’t tell you until you hit Advanced Mental Health Status is that there’s a third ‘F’, and that ‘F’ is Freeze. I am a freezer. Not the kind that keeps your popsicles solid, no, I am that gazelle in the African Savannah who hears the lion coming and decides that the best course of action is to stand perfectly still and hope that the lion think’s they’re dead. Let me tell you right now, as a gazelle, it doesn’t usually work.

I love being an active part of my communities- and there are a lot. My friends used to refer to me as the Uber Minority, which makes me sound like some sort of awesome Transformer type robot. Unfortunately, that is not the case, and it more means that people kind of tilt their heads when they first meet me. They know that there’s something different about me, but they can’t tell what it is. Sometimes they try and guess, which depending on my mood, can be a lot of fun. Given my combination of identities, no one ever guesses perfectly right, and honestly, if they did, I wouldn’t know what to do with myself. I’d probably off up some sort of prize. Probably a Tangle, as I have a bunch, and always have one on my person. Not my fuzzy Tangle though. Hopefully they’d appreciate their prize.

A lot of communities mean a lot of opportunities to interact. There’s National Eating Disorders Month, Autism Acceptance Month, and Pride Month, just to name a few. All of these usually make me really enthusiastic about being active on Tumblr and Instagram, and even here on this blog. But it doesn’t be a surprise to you that every opportunity that’s come up this year has made me freeze. Activity on all of my accounts dropped off suddenly, and I hate it so much.

I’ve been trying to work my way back up. Luckily, I had submissions I could use on my Tumblr blog (check it out!), and was at least still comfortable liking things on Instagram- things with minimal interaction, and that didn’t require me to put myself out there. Because let’s face it, I’m a bit of a coward.

At least that’s what it feels like. If I think about it without beating myself up, it’s more like I’m a perfectionist- a perfection that when combined with my intense need to be a good advocate and a good disabled person, freezes me in my tracks.

But that’s an awful lot of pressure to put on myself, isn’t it? I can say it, I’m not sure that I really mean it. So let my put it all out there. It is not my job to represent every person in my community. It is not my responsibility be witty and eloquent so strangers will pay attention to what I have to say. I IT IS OK for me to explore my identities publicly, IT IS OK to share my opinions, and IT IS OK to say things that others in my community disagree with (as long as I am respectful).

I can take chances, make mistakes, and get messy and the world will not end!

Doesn’t all that sound great? How awesome the world would be if we were all able to go through life unafraid of trying, even if there was a chance of failing. Clearly more easily said than done. But if therapy had taught me nothing, it’s that baby steps are always the way to go. So:

I will keep to my Tumblr post schedule (but not kick myself if I miss a day)

I will keep writing (even if the end product doesn’t get posted here)

I will have fun posting things to Instagram (and stick around to see what my friends are posting too)

I will participate (and I’ll try to remember why I enjoyed participating so much in the first place)

And lastly I won’t get down on myself when things aren’t perfect.

 

4 Reasons There’s No Post Today

I’ve been having a tough week, health wise (see Monday’s missing post as an example), but I figured I could leave you with a short bit of dark humor

1. I think my head might explode: I have the headache from hell, and since it’s in my neck too, I’m having a hard times convincing my anxiety that it’s not meningitis. Also, my cat Spike is a mother hen when I don’t feel good. It’s sweet, except that he’s 18 pounds and he insists on constantly touching my face.

2. I keep falling asleep: And not just in appropriate ways like when I’m laying down. Sitting up is fair game too. You know the warning they put on NyQuil about not operating heavy machinery? I need that on me.

3. The world is spinning: Since I started physical therapy a few weeks ago, my POTS has been in a consistent flare. It’s depressing that 7 minutes of laying down exercise can affect me this badly. I’m eating tons of salt, like the experts recommend, but my I can’t really feel my face anymore…

4. My hands are shaking: Another POTS symptom, it’s because my blood sugar is all over the place. My body goes into full on trembling shaky sweaty rebellion if I don’t eat exactly every 3 hours. I never thought my pancreas could hold me hostage, but here we are. Who knows, maybe next week my spleen will demand $10000 in unmarked bills.

Thanks for stopping by, and I hope your bodies feel better than mine.

Meltdown Embarrassment

Oh man, what a day.

Any day that includes a meltdown is tiring, but rarely am I as embarrassed as I am about the one I had today.

For some reason, sensory related meltdowns seem acceptable to me. My senses are being bombarded, I’m overwhelmed, and often in pain, so I find it completely understandable that my brain reacts so intensely.

This was not a sensory meltdown. Today I had my first IV saline infusion, and I’m kicking myself for not being able to predict what happened. I had to wake up early (strike one), I had to navigate a large medical complex (strike two), and I was going into a brand new situation (strike three).

I really thought that I had a handle on it though. I knew what was supposed to happen, and had been mentally practicing what was going to happen.

This is where everything went wrong.

First, they were running late, and I had to sit in the waiting room for more than half an hour. Secondly, the first nurse to check my chest port thought it was warm and pink, so she poked and prodded at it, and eventually called over another nurse, who also poke and prodded. After that got sorted out, they informed me that since I was a new patient, they had to run the IV at a liter every two hours, instead of one an hour like I was expecting. I’d been planning to be there about two hours, and suddenly it turned in to four hours. After all of that, it turns out that my doctor had written the orders wrong, and we’d have to change plans for future infusions until it was sorted out.

This was when I started melting down. After the waiting, and the touching, and the change of plans, my brain couldn’t hold it together any longer. I started ranting at my wife. She helped me keep my volume under control, and to not blame the nurses for things that they couldn’t control. After that, I lost my words. Everyone was asking me questions and all I could do was nod and try not to cry. My body started stimming without my permission, my extremities started shaking rhythmically, and my head bopped violently to invisible music. And I couldn’t make it stop.

Thank god my wife was there. She communicated with the staff for me, and helped them contact my doctor for the correct orders. She told my nurse that we were going to cut the infusion short, and stop after one liter of saline instead of the two we had planned. She also had them reschedule me for later in the week. After all of this, she got me out of there.

I was so embarrassed.

I have non-sensory related meltdowns so rarely anymore that I kind of thought I had moved past them. I think I have a sort of elitist view of myself that says that since I’m so self aware, I should be above this sort of thing. I’m embarrassed about this too.

I talk so much about Autism Positivity, and I totally believe what I say, but I think that I have to remember that it doesn’t matter how smart a person is, or how self aware, or if they’re well prepared or have coping skills, sometimes meltdowns happen. They happen to all of us. And they’re nothing to be embarrassed about.

Even so, I’m really hoping that next time goes better.

Torn By Caution

I think that I’ve mentioned here and there that I’ve got some medical issues. I’m dealing with two right now.

One is, I’m having a lot of pain and numbness and tingling in my right leg, all the way up to my hip and lower back. After 7 months of pain, 5 different doctors, 4 MRI’s, and 3 injections, we’re at the final option: surgery.

The second problem is chronic, and it’s called POTS. It’s a neurological condition that’s cause my dysfunction of the autonomic nervous system, and I’ve been dealing with it for almost a decade. I’ve done all the tests, I’ve tried all the meds, I’ve suffered through all of the therapies. Except one.

Fluid therapy. My neurologist isn’t really a fan of it, and he has some valid reason, but we’ve run out of things to try and improve my quality of life. This therapy involves getting a liter or two of IV saline a few days a week. Problem is, getting IVs put in that often is hell on your veins, and often results in blowing out a lot of useful veins. So we’ve decided to put in a port, and what does that mean? Surgery

I’ve been out of school for about 6 years, and this spring, I planned to take a class or two at my local community college. I was really excited, because if these classes went well, I was going to start the process of getting a Bachelors.

But there’s an issue here, and I bet you’ve noticed it. I need to have two surgeries, and they’re both going to be during the first month of classes. So what do I do? I’m torn. I want to go back so school so badly. I’m ready to move forward with my life and this is the way I’m going to do it. But if I’m couch-bound for a week both times, my work will suffer. If I’m on pain medication and unable to think straight, my work will suffer. If one or both of the surgeries cause a POTS flare, my work will suffer.

So what do I do? Be cautious and realistic by dropping my classes? Or follow my heart and hope that it will work out? I just don’t know.