When the going gets tough…

Obviously, life has been chaos, because had it not been chaos I’d have had plenty of time to blather on to wordpress, no? Trust me, chaos.

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If I never have to be party to selling a house again, it will STILL be too soon. This has been an exercise in extreme frustration and I’m not sure we’re well prepared to be on the flip side of the coin in just a few short weeks as we start looking to buy a new property. Don’t get me wrong, absolutely excited, but terrified is also applicable.

My biggest concern is the state of my medical bullshit and nailing down the numerous specialists to stay on top of it. I don’t hold much faith that this will be a smooth process, especially given my body’s decision to totally melt down at the moment. Full body systemic crapshoot, wheeeeeeeeeee 😀

But that is neither here nor there. I’m just checking in for the sake of checking in and reminding myself this page exists. The move does not effect plugging away at my degree (helloooooooooo BA), thankfully, and the potential for steps toward re-entering the workforce is still in play. Wish me luck!

Mentally packed and ready to go.

Back at the end of February a bombshell was dropped. It was expected, really, but no one thought much of it, and certainly didn’t expect it to happen so soon. “We’re leaving.” A cross country move. At that point it was at least thrown out into the ether that it was happening, like it or not, and we should maybe begin to wrap our heads around it.

And then the blowback. “We’re listing the house June 1st.” What?!

Whoa, whoa, whoa, slow your roll, bubba, back up, we’re WHAT?!?! And so it came to be that in the waning days of April we were purging every extraneous object we owned, listing others for sale, and with May waiting around the corner planning sprucing projects to make our love-worn home of 22 years more appealing to potential buyers.

Don’t get me wrong, there is a certain level of excitement that comes with the prospect of being somewhere new. For me that’s the excitement of a new care team. Likewise the fear of a new care team has me physically ill. I love my primary care doctor. She is supportive and listens, and still pushes me to meet goals I might shy away from. My Neuro-Ophthalmologist is shaping up to be that kind of doctor, too. The rest I either don’t mind much or am gleefully awaiting their replacement. We’re moving to an area with a large teaching hospital that touts a great reputation, and I’ve already been in contact with the Neurology office satellite and have received a comforting welcome in advance with the peace of mind that doctors within the practice currently handle cases similar to mine. No worrying about “What did you say it was again? And are you sure you were diagnosed with that? I need to read up on that.” Uh…

So, yes. Forgive me, errant reader, for my maintained radio silence as we begin the transition to a new house, a new state, and a new team.

And it’s funny how I imagined that I would be that person now…

It’s interesting to sit and reflect on where I thought I’d be now when I was 25…20…15…

It certainly wasn’t here. 15…oh, 15. We were blissfully ignorant. In some ways I think we all are at 15. 20 brought angry resolve. 25 was resigned determination.

And so, 30. 30 has been a year of cracking under the pressure of too many years of naivety. 30 has been recognizing that sometimes that resolute anger to push forward, and the determination to rise above the pain and “fake it until [I] make it” often winds up doing far more harm than good. 30 has been realizing just how much of the mourning process I’ve ignored and shoved aside, because admitting that I’m NOT where I thought I’d be, and that my plans and goals have had to change because of the state of the rest of me was just not anything that I wanted to acknowledge. Life has a funny way, sometimes, of forcing you to acknowledge these things, though.

I’ve been stuck in the thick grip of apathetic depression since before Thanksgiving. I almost wish I’d hit that crisis state of depression, because this feels almost worse. It’s been months now of feeling bogged down, dragging through wet cement while wearing sand bags, knowing full well that there’s still so much I need to be doing, and the anxiety of the deadlines looms while the tantalizing voice of the depression whispers little singsongs about how it’s pointless to try because we’ll just fail, and how stupid we must be to think we could have done this, and still the guilt of letting a deadline slip by just tightens the knot in the pit of my stomach just a little bit more, all the while still juggling the 15 other balls in my court and catering to my tiny tyrant toddler.

I wasn’t trying to accomplish anything more than getting a post up here for myself, to at least say I’ve done something here since December. I figured it might be nice to have some of my head out in words to read later and mull on. Maybe use them to construct the ladder out of this cement. Who knows.

 

A quiet aside.

School has taken precedence in the past few weeks, much to the chagrin of my brain which feels pent up and bound by the constraints of deadlines and finals.

I do keep writing, dutifully, every week, but for all the posts waiting in the wings none seem quite fit to move up from their rough draft status. I’m sure it’s relatable…when things loom on the horizon all the piddly outlets you try to find to patch problems temporarily seem….utterly useless and not good enough.

Medically things took a turn for the strange for awhile, leading to several new referrals and the joy of worrying about a new segment of the alphabet being added to the already lengthy amalgamation of letters that seem to describe my life, or certain aspects of it. If nothing else, I hold out hope that at least one of these new specialties will find some puzzle piece I hadn’t previously had, give us something new to try instead of just drawing back and flinging meds at the side effects of meds.

I’d like to say that I’m in a place mentally where I’m ready to just hop right on in and get back to pouring out what I need to, but it’s a slow climb back out of the hole of anxiety and depression, and I’ve nestled myself in firmly over the past month. Having patience with myself is one of my biggest trials lately.

Sunshine and Rainbows

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I haven’t disappeared, I promise. I’ve even been writing here, it’s just the last few weeks have built this heavy energy sapping post that I’m not entirely sure I’m ready to publish publically yet. I will, eventually, I’m sure. It’s things that obviously I needed to get out, and had something to say about…but to read it right now is so acutely painful and triggering that I know I haven’t achieved what I set out to achieve with it, and it needs to be coddled and molded into something less abrasive and salty. It’s meant to be raw, but it’s not meant to be salt in an open wound type raw… does that make sense? Does it matter if it does?

You might be able to imagine where my head has been at these past few weeks. Obviously no place fabulous, and yet, somehow, I’ve managed to muddle through more or less unscathed and still kicking. Always kicking. What I thought was a flare cycle seems to be a new level of normal to adjust to for now, so with finally recognizing it and trying to adjust accordingly, some of my burdensome doom and gloom attitude is starting to dissipate again.

I spent a few hours this week visiting a friend in an in-patient center for behavioral wellness (that’s a fancy term for the psych unit for the less PC of us), and as visiting hours were ending they were congregating for a group session that I was privy to the beginning of. The topic was recognizing our weak points as a starting block instead of an obstacle. It’s been replaying in my mind since then, twisting and turning and growing into a broader thought. This morning I woke up unable to bear weight on my left side. My hands were gnarled into misshapen fists hugged tightly to my chest, refusing to stretch and flex and cooperate with me for over an hour. The blind spot in my right eye was of no consequence because I couldn’t focus my eyes anyhow…..and yet, within that first hour of waking up, my little monster toddler snuggled up to me with his best boo boo face on and begged to go to the park.

Starting block, not an obstacle.

I’ve never leave my house with the rollator. In public I rely on frequent breaks and a death grip on shopping carts to remain vertical. I’m not sure if I’ve just been vain enough to not care that I NEEDED the rollator, but it’s been a sticking point for me for quite some time now. If I’m not well enough to function without it, I simply don’t go out. That is to say: I stay home and don’t function. Not healthy.

Today I went out, to a playground, with a walker. My goofy ass, in my Batman hoodie and Frozen high tops worried about looking like an old woman with her walker, watched the kids scream and run and play for HOURS, not just 20-30 minutes. The anxiety was ridiculous, but the longer I stayed, the less I felt like a spectacle. The more I focused on the little monster that had conned me out of this house with his pouty little lip and sad puppy dog eyes who was now delightedly cannonballing down slides and climbing structures designed to make mothers nervous wrecks. Afterward we even went out to lunch!

It’s not all sunshine and rainbows, here, but the rain is easing up….and that’s a change I’m ready to embrace.

Running the gauntlet.

I mentioned a few weeks ago all the upcoming appointments I had throughout the next few months…Leave it to me not to remember that this particular week would be full of back to back appointments that would have me bedbound on a beautiful sunny October day (my favorite).

A lot of things this week were referrals months in the works…for example: neuro-ophthalmology had been booked back in January (for August) and in April I was called to reschedule it to this past Tuesday. Frustrating? Oh, hell yes. When you have such a large diagnostic and care team, it’s hard to be the one to manage all the information. In my case, I left a neurology practice for what I felt was poor quality of care only to have to start over with a new neuro team, who in turn, wanted all their bases covered by their own specialists (neuro-op) in order to build a comprehensive treatment plan.

An info session with a new support group…when dealing with severe depression and social anxiety, those things are like pulling teeth with no novocaine. I survived it, though! Whether I’ll be able to handle the biweekly group remains to be seen, but baby steps in that direction are nothing but progress.

Lab work for EVERYTHING UNDER THE SUN AND MOON AND POSSIBLY PLUTO.
I’m telling y’all, I don’t think I have much blood left at this point. I’ll be back in for a transfusion in no time.

MRI/MRV, a new CT scan, x-rays, and through the grace of whatever higher power I’ve managed to delay a spinal tap for at least a few more weeks after them wanting it scheduled for Wednesday morning.

After all was said and done with the rest of the appointments, there was also a sleep study to check on a variety of sleep issues…Nothing like trying to sleep hooked up like a christmas tree and being woken up to do random things on command all night…so restful! Regardless, here I am today, observing my little slice of October through my bedroom window from the relative comfort of my bed, recuperating.

Trying to manage multiple chronic issues and being a solo toddler mama and a student is probably the biggest challenge I’ve ever faced. I’m not complaining. I don’t curse my bad luck for my health issues, and I don’t regret the decision to become the mama to the sweet smart and funny little boy that is my little sunny October afternoon every day. I can’t say I don’t whine about being a student, but I keep going!

Through all the stress of the past month it’s easy to see in my writing when my head is just a total and complete mess. My last entry here I reread just a day later and was floor at how rambling and nonsensical it was…I’m not even sure what point I was trying to get across with it. At the time, I suppose, it fulfilled the need to write and just get some of the crap trapped in there out. As hard as it is to make sense of, the overwhelming feeling of relief that comes with hitting the “Publish” button at the bottom of this page is worth the potential confusion and disarray of whatever word vomit happens to be in this little text box at the time.

Never discount the power of letting it all out. It’s not a replacement for therapy, but it’s a good in-between exercise!

The middle finger of fate and other fanciful things…

I spent quite a while mulling over how exactly I could explain the burning need I feel to get some of this out. I’m still not entirely certain, truthfully. I’ve had this draft sitting in the wings for the past month. Every now and then I come in, brush away the accumulated dust, reread what I’ve vomited onto the page, add bits here and there, cull others…it’s like a personal bonsai, and I’m pruning it to death.

In an effort to force myself to write it out to the end, I skipped my normal Friday post last week. Instead I sat here Friday night, bingewatching The Walking Dead (Hey, zombie chick, I feel you, acutely!) on Netflix and staring at the incessant blink of the cursor taunting me with a sudden and thorough lack for words. This Friday rolled around and I found myself so exhausted at the thought of rehashing my own thoughts that I curled up in bed with my toddler instead.

There are days when literally all I want to do is write. To take the time to sit and let the endless racing in my mind spill out onto a page, then two…three. If it were to start proper, it would never stop. There’s a certain comfort in knowing the paroxysm of color and light and noise in my mind translate to words. Actual sentences. It’s cathartic, and it gives me peace of mind to get some of the crap out and away, but it can also be infuriatingly difficult to convey what I actually mean…but there’s also this impending dread I get from knowing that suddenly what were private thoughts locked away from prying eyes can suddenly be read and possibly inferred entirely differently than I mean them to be. Afterall, we all think in vastly different ways.

It is no secret that I bury myself in words. Wrap them around me like a love-worn blanket on a cool night. My world is carefully crafted in letters and lines; an intricate maze of sentence fragments and rambling paragraphs, sketches and sculptures, tangible and dissipating smoke rising to the rafters with a whisper. I’m sure it’s not surprise that I tend to keep what I write hidden. Tucked away and censored. To this day I have only intentionally shared this blog with two other people, and even then I spent days gnawing on the insides of my cheeks coming to the decision to open up the gates of my little stronghold just a sliver. In the past this has only served to burn me spectacularly. My words end up twisted back around, used as a way to dig deep and strike at the heart rather than to understand. It may not be a surprise to you, dear reader, considering my verbosity on this post especially, but I’m not really one of those people who are able to maintain normal healthy friendships with people. I spend the bulk of my time interacting with others petrified that I will do or say the wrong thing and be cast out as unworthy of their time. It is one of the reasons I’ve taken comfort into retreating into this awkward shell of mine.

One of the most important things I’ve ever been told is that depression is a damned liar. I feel like every now and then I need to stop spinning my wheels and pretending that it doesn’t affect me as deeply as it does and just finally put pen to paper (or fingers to keys) and let my stream of consciousness spill forth to fill the void with something…anything.

It’s common for those of us suffering from chronic conditions to also suffer mental maladies. In fact, if someone claimed that they didn’t suffer in their own mind when dealing with all this I’d be far more confused by them than those of us that teeter on the brink of that deep well. Not to say that acceptance and self-love aren’t attainable…not at all, but as you may have gathered from my other posts, I don’t shit glitter and rainbows, and I won’t ever sugarcoat the fact that this existence can suck donkey balls. I don’t verbalize it to those around me, but this little anonymous corner of the internet is mine, and mine alone, and I can bitch all I want! Or just as much as it takes for me to take the edge off.

The thing is, my depression and anxiety haven’t come from the rest of my shit. I mean, sure, they are certainly enhanced by it. They feed off of it like ticks off an old coonhound. The fact of the matter is that I wandered into the Mad Hatter’s tea party long, long ago. My seat is well worn, and there’s a sort of comforting familiarity in the chaos and static. I know, it sounds like it’s a strange admission….finding comfort in depression and dissociation. That’s not quite what I mean, though.

One of the ways I explain chronic pain to people is that, if for some reason one day I woke up entirely pain free….I would be seriously worried that something was wrong. An average day to the average person would be so out of -my- realm of “normal” that I wouldn’t even know where to begin with how to handle it. Living with depression and anxiety has been so ingrained into my life at this point that, to be without those familiar feelings just doesn’t mesh with what I mentally expect of myself anymore.

But there’s meds for that!

Oh, yes, the meds. Glorious, horrible, spiteful meds. As much as depression lies….anyone that tells you that meds are a magic cure all so long as you find the right one is trying to sell you a bridge. I have spent the entirety of my adult life adjusting medications in an effort to improve one thing or another. I’ve been chasing depression and anxiety with a pharmaceutical chaser for much longer. There have been times I’ve been able to go without. Long stretches of time, even, but for the most part my chemical makeup needs a kick in the pants to stay on the manageable side of stable. A kiddie roller coaster instead of the freefall of death and destruction it can get to be when left to it’s own devices.

There’s still such a stigma, though, surrounding mental health issues. No one wants to admit that they can’t just buck up and soldier on. The world is full of disappointments, everyone has bad days, blah blah blah.

Let me tell you…I’m busting my ass holding all these pieces together. It’s an all day every day ordeal. I look in the mirror and I don’t recognize myself, and I don’t mean in the emo lyrics of the early 2000’s type way, I completely disassociate from myself on a regular basis. It’s a jarring experience to realize you’re going through the motions but you feel like you’re just watching it all happen from outside this detached bubble with no ability to really interfere. It’s scary, honestly, and this has been around longer than any of the other medical issues. Creeping into weigh down the day to day. Slowly grinding it to a halt. Then, as randomly as it settled in, it moves it’s way out for awhile, just as slowly, just as arduous. It’s a constant cycle of up and down, like a rusted carousel horse, grinding painfully every millimeter of the way only to pause at the crest of that climb and creak steeply back into the abyss.

This is just how my brain is wired.

It’s not ideal. Of all people, I know that. I’ve been cursed with the gift of introspective logic, as my therapist has told me. My ability to analyze myself is second only to that of a high powered microscope. Knowing that I shouldn’t be this way, and yet that I can’t help it seems like the universe’s way to conspire to say “Fuck you” for some slight I wasn’t aware I committed. Thanks, fate.

The point, though?
I’m still here. I’m still kicking. Shit sucks, but through it all, I’m inching my way along. I’m starting to think the reason I write everything here that I do is just to give myself reminders that I’ve got this. I’ve done this so long that it’s all second nature, and as painful as the process is to be caught in over and over and over and over again: I’ve done it before, I can do it again.

Yeah. I’ve got this.