This morning I woke up thinking about my online reputation and what I would like it to be. When others read my poetry and personal blog posts (especially the ones having to do with mental illness, autism, or chronic pain/chronic illness) the things I strive to represent are honesty, openness, relatable vulnerability, realistic hope when possible, comforting solidarity, the healing power of sharing our pain, and the courage and inspiration to keep going, even when things feel hopeless.
However, since I myself struggle from mental illness and chronic pain, being transparent and honest means that often my viewpoint comes across as dark and bleak. I don’t try to hide that or tone it down when it happens, because to me, that is part of being honest and vulnerable enough to share what the experience of dealing with those issues is like on a daily basis. Putting a happy face on it would be lying.
My only worry is that sometimes the reality of dealing with daily mental and physical pain is that you can start to sound whiny. Part of me says, “well, of course, you are going to sound whiny now and then if you are in pain all the time! No shit!”, but for some reason our culture makes whining out to be such a negative thing that most of us want to avoid that look at all costs.
Maybe we as readers and audiences have to decide rather we really want full honesty and openness (even if it includes some whining and negativity) or if we pretend to want the truth, but in reality just want a short, scrubbed clean, feel good version of life. I know which I prefer, but I guess everyone has to decide for themselves.
2 days until Christmas, and I don’t think I could feel less festive if I tried. I’m dragging myself through each day, not really wanting to get out of bed or do anything. I’ve tried to break the depressive funk by making myself go to a couple holiday events in the past week, but the deep sadness I feel will not be pushed away or covered for long.
I’m still dealing with a lot of hurt from recent events with my husband, and while we are working on healing and doing therapy, the wounds are deep, especially for a heart like mine that struggles to trust so much in the first place due to a long history of trauma and abuse. Sometimes I despair that I’ll never be able to truly trust again.
My heart aches. My body and mind are worn out. I feel little hope. I wish I could report better things.
It’s been a minute since I just did a life update, so let’s take a minute to do so! I’ll break it up into categories for ease:
Physical health – Thank God, the Topamax increase seems to have helped the migraines quite a bit. They aren’t gone entirely, but have been much better lately. Still having some digestive issues, so I’m seeing the GI doctor soon. We suspect Gastroparesis or some other motility disorder might be at play. I’ve already been following a gastroparesis diet and it has been helping my symptoms, but we won’t know till I get a test obviously. That condition is really common with Ehlers Danlos though.
Mental health – Uh, all over the place. Anxiety like crazy. Kinda hyper. Hard to concentrate and focus…that one has been a real pain lately. Even getting stuff like this done isn’t easy. My brain wants to go in fifty million directions, none of them what they are supposed to be doing. Depression too, but kind of medium level. Like just the blahs. Apathetic. Need constant positive stimuli to not start feeling blah again, but that isn’t reality, is it?
My writing – Finally, some good news!!! First off, I was contacted by a music professor at Central Washington University in Washington state who wants to use one of my poems to set to music for a project she and her colleagues and a few students are working on. They will compose music for the poem (for instrument and voice) and then put together a concert music video for it (because covid and all I assume) and it will be released in April. Of course, I will be credited for my part in the project, and will share the video when I can.
Also, I just got an email today that the educational resources website Twinkl has chosen my blog to be one of their Top Autism Blogs of 2020! They get pretty high traffic on their site, so it is quite an honor and I’m psyched about it!
I’ve been having a tough time lately mentally and physically. These constant migraines and stomach/digestive issues have really got me down. Sometimes I feel like life isn’t even worth it if every day is going to be like this. If you’ve ever had chronic, unrelenting migraines day after day, you probably understand how I feel.
I am trying hard to get this fixed or at least lessened and my doctors are trying different things, but nothing has come close to solving the issue yet. I feel like I’m just being dragged through each day and the only time I feel good is when I’m asleep.
This is my favorite time of year and I normally love to go out and do Halloween-ish or fall-ish things, so not being able to do so compounds my sadness. This weekend my husband has plans to take me several hours away for my birthday to see the Jack-o-lantern spectacular in Louisville, Kentucky. I want to go so bad and will try to go if at all possible, but I fear I won’t be able to if the health issues are acting up bad.
Luckily, the event is a drive-thru event, so I wouldn’t have to do much physically, but if I have a migraine or stomach issues, driving that far obviously wouldn’t be fun and would kind of spoil the weekend. Keep your fingers crossed for me!
The bathroom wall moves.
It ripples and sways
with the mournful, desolate
sound of the radio.
Ocean blues and greens
meant to calm
only inspire vertigo.
What are those things
Jealous sea foam?
I lay back,
releasing my grip
as the tub empties
and my consciousness
among the dirty water
before it all disappears
down the drain
I’ve had a really bad couple days. The day before yesterday I had a total meltdown because I couldn’t get a painting right. It was kind of the last straw, as I have been struggling terribly with irritability, anxiety, ocd, and anger lately. At first I thought it was just a phase or one of the mood swings that mood disorders bring, but it has lasted a long time now and I am starting to wonder if it has to do with the new med I have been put on (Lamictal). The irritability and worsening ocd definitely seem to have started as I began taking higher doses of the drug.
Yesterday all the anger, irritation, and anxiety turned into depression and I cried a lot, felt helpless and hopeless, and entertained some pretty dark thoughts. I was in one of those moods where I felt utterly worthless and felt that no one liked me or cared about me, I even felt like my husband was sick of me. That was probably projection as I’M sick of being around me in this state.
Today I’m a bit better (no crying yet), but still feeling low and exhausted. I haven’t been sleeping well lately at all, which isn’t helping. Just not in a good place right now.