New Year, Old Beginnings

How many new beginnings is a person allotted? One for each new year? New month? New day?

A good story has a beginning, middle, and end, not infinite beginnings. I intend mine to be a good story. I shall not endlessly rewrite the first chapter, seeking its perfection. I shall progress and grow, regress and change.

The new year hands us a blank page, inviting us, daring us, to write our future; and we reach out with eager, childlike hands and giddy minds racing with ideas of all the scribbles we will put on it. But it need not be a new story, merely, greatly, a new chapter. The Old You may be permitted to live in the pages pressed against the new, her ink occasionally bleeding through to touch and taint the crisp new pages.

Old experiences and effigies of character need not be thrown aside to make way for the new. They may be carried along, regarded with equal importance, for their assemblage acts as a pedestal, hoisting you ever higher.

I will hope for this chapter to be a better one, but will not regard it as useless if it is worse.

After many long, dull chapters, I have grown disinterested in my own story. I long to restart, with a fresh page. But a fresh page does not bring with it a fresh heroine. Therefore, I must simply make this one grow.

Simply.

How does one rise to meet a challenge, when the challenge shrinks horizons rather than expanding them? This is my question for this new chapter. If I can find the answer, I am sure I will find with it a greater appreciation for my heroine.

05cb2-1rbgzf09lrj0adzlywe4d-q

Updates On Remodeling Life For Chronic Illness

Where have I been? Well, certainly not on beautiful Italian mountaintops where this picture was taken (although at one point I was). It just seemed like a nice blog post picture. And it was one of the first to pop up when I was going through my pictures to make this. And I like looking like I actually have a life.

For a short while, I was keeping my blog updated. I purchased a domain, thinking perhaps I could transform what was once a place to dump ideas that I liked every few months into a Blog. Like, a Blogger Blog. With readers and money and everything. But, as suddenly as my ability to write had returned, it disappeared again. It was like my brain was on a permanent fog delay. It still is, much of the time.

Sitting at my laptop to write simply began to hurt too much — as did reading, playing instruments, and many other things. At this point, after several years of testing for Lyme and other possible sources of the pain, fatigue, and other symptoms, the only fixed diagnosis I had received was Fibromyalgia (diagnosed rather quickly and dismissively by a rheumatologist, who then offered no guidance other than to tell me to look it up on the internet). So I saw a chiropractor regularly, tried massage therapy, and new pain meds every few months, and just… waited. When my neck pain gets really bad, it radiates into my forehead and my entire skull aches as if someone has shot an invisible arrow through it. This was my norm for a while.

Every week I would go to my chiropractor, and every week my neck seemed to be getting harder and harder to adjust. I got the feeling he was starting to give up, and I don’t blame him — In his words, it was “like trying to adjust a plank of wood.” Tired of going home with my neck and head still hurting and only being told to use heat and ice to treat it, I asked if there was anything else I could do for the pain. An MRI was ordered.

Initially, I had a conflict and couldn’t make the appointment, but after that I just kept rescheduling it. I was tired of doing test after test just for them to come back normal when clearly something was wrong.

The doctor handling my medications smiled knowingly when I told him about the MRI. “You won’t find anything on that,” he said confidently and dismissively. I had two thoughts in response to this: 1.) You’re a psychologist. You don’t have enough information to tell me that. 2.) Maybe he’s right. Maybe it’ll just be another waste of time and money. Maybe I shouldn’t go through with it.

Luckily, my therapist and I decided my first thought was more logical. And, luckily, I’m extremely contrary and his comment had pissed me off just enough to go through with it, if only to prove him wrong if something was there.

And something was.

That MRI led to my first not-invisible diagnosis in a long time: Klippel Feil Syndrome. Basically, two of the vertebrae in my neck are fused and my neck is much straighter than it’s supposed to be and it’s real painful. I was extremely happy to finally have a problem I could see. A test that didn’t come back normal, that didn’t leave doctors to come up with a cause based on information that wasn’t there.

This time, someone could point to the scans and clearly, without a doubt, tell me what and where the problem was. Also, I got the satisfaction of reporting the significant results to my dismissive doctor.

With Klippel Feil, which is a congenital condition, you are not supposed to do contact sports, or anything where you could hit or jar your spine and neck — i.e., everything I did as a child. My mom, looking back on my years of horseback riding falls and doing tricks with friends on the trampoline, was now very concerned there might be neurological damage and very glad I was still alive. No one in my town knew what to do with this relatively rare diagnosis, so off to Johns Hopkins I went to see a specialist.

As of now, I’ve only had one appointment there. Though I don’t know much more about my condition at this point, I’m giving Hopkins a paragraph just because it turned out to be the first time in a long time that I did not come out of a medical office crying and extremely depressed. The people at Hopkins seemed genuinely happy to see their patients and assess their problems. There were tons of people ready to help you at every turn, and they did so without any awkward and uncomfortable jokes. There was also hand sanitizer everywhere, which is awesome if you have germ-related OCD like I do. But most importantly, I was not sent out with whatever diagnosis would let the doctor off earliest and with the least work, and I felt respected and believed.

In the time I haven’t been in doctor’s offices, I’ve been mostly… sitting. I feel incredibly spacey and detached most of the time, and my energy, both physical and mental, has been primarily nonexistent.

You know the alert that pops up on your phone when you hit 20% and asks if you want to switch to low power mode? Well, 20% has been my maximum for a while now, and it constantly feels like I’m on low power mode. And the alert you get when you hit 10% just telling you to plug your phone in or it’s gonna die? I’ve been at that level a lot, too.

For me, the phone alerts analogy translates in real life to blurry vision, shaky hands and legs, worse motor skills, and slower reaction time, all indicators that I’m about to hit 0% and should get home asap. “Charging” pretty much involves lying down until my muscles don’t feel like rocks anymore and my brain doesn’t feel full of cotton.

So yeah, it’s been an empty, boring stretch of waiting to feel better again. But no one knows when, or if, that will be, and a quiet day in watching movies lost its charm months ago when it became the norm instead of a treat. So, instead of waiting for myself to be able to re-adapt to normal life, I’ve been working on redefining normal life for myself. (And not being super sad about it — cause lately, I haven’t been handling this “I have a chronic illness and can’t do anything I used to do” thing as well as I had been.) There are still useful things I can do from the couch if I work it right.

I bought an iPad, because my old MacBook Pro was heavy and overheated a lot, requiring an additional fan that made it even heavier, and it was starting to seriously hurt to use. I’d been wondering if the mobility and lightness of a tablet could be the replacement I needed, and so far it seems to be working well. As I write this, I have the screen propped up on a table in front of me and a Bluetooth keyboard on a pillow in my lap. There’s no weight, and I can adjust each thing individually. So step one, Replacing My Laptop With Something I Can Actually Use, is complete.

Believe it or not, just holding up a book has started to hurt, too — a problem that’s also solved with the iPad. I think I like it better than a Kindle, because it’s more the size of an open book, and has cute page flip animations that makes it feel even closer to a real book. I also have Irlen syndrome, so I use color overlays to read. Constantly moving them from page to page was annoying, and trying to keep them flat against the curved page hurt, so being able to prop up the tablet and overlay and leave it there is incredibly helpful.

Another thing I’ve been doing is making video health logs, because for a while I was literally too tired to write. They’re handy because while I may not always have a notebook on me, my phone’s usually there in my bag or pocket when something comes up that I want to log (e.g. sudden shakiness, an anxiety attack).

Other than that, I’ve mostly been reading, watching movies, and playing Hogwarts Mystery — the last of which being way more fun to talk about than illness, so tell me what you think of it, what house you’re in, and how far you are in the game!

I found the Canva app and realized I could make nice blog headers really quickly, so that’s honestly the only motivation I had to write this post, and even that fluctuated. With any luck, I’ll accidentally make a graphic I like and want to write a post to go with it again sometime soon.

5 Quotes + Tips That Get Me Through Bad Days

 I am the one thing in life I can control.

— Hamilton (Musical)

The following line is equally good — “I am inimitable / I am an original” — but this is the one I find most helpful. You will never be able to control other people’s actions. You will never be able to control what people think about you.  There is only one thing in this world that you have complete control over, and that is you. Your thoughts, your actions, what you put into this world, that’s all you need to worry about. Life gets quite a bit lighter when you accept and let go of the things you can’t control.

Motion creates emotion.

— Tony Robbins

Usually, if you have depression or something similar, everyone tells you to “go outside, get exercise!” with the goal in mind being to rid you of your gloomy depressive haze and make you happy. This quote, however, suggests motion as a means of creating emotion. Any emotion. Because whether we’re angry or happy or anything else, emotion is what gives us the drive to do things. And, often, if you’ve just been lying in bed all day, you don’t currently have a huge breadth of emotions.

The motion doesn’t have to be big, anything to give you a slight change of scene or viewpoint. Depending on the day, it can just be getting out of bed. Judge for yourself what you’re up for. I recommend putting on music you can’t not dance to (which is early 2010s pop for me. Happy nostalgia can be very helpful nostalgia!), but other, less exerting suggestions include: reading a book, taking a walk, sitting outside, calling a friend, texting a friend dumb memes that you know will make you both laugh, and putting on a new outfit and showering if you haven’t already.

Have courage and be kind.

— Cinderella (2015)

This quote has honestly become my life mantra. As long as I have it, I can get through anything, because if my only goal is to be as kind as I can no matter what (disclaimer within reason obviously blah blah blah if someone is stabbing you you don’t need to be nice to them), I no longer have anything to worry about.

Having a goal that’s aimed outwards — trying to make other people feel better rather than trying to make yourself feel better — can take a lot of pressure off, and be really helpful in getting you outside of yourself for a little. When I had auditions and rehearsals that I was really nervous about, my therapist suggested thinking about the nerves of the other people auditioning and rehearsing instead of my own. When we decided that my goal would be to make the people around me feel more comfortable and not worry so much about myself, although I was still scared, it didn’t seem to matter as much anymore. Trying to hide or calm anxiety is an extremely difficult and scary task; complimenting someone is not. So that was my lens: find the good in other people and bring it to their attention. Many times, approaching people in order to give them a compliment was still scary for me, but a smile often suffices when words can’t quite make it out. A quick, genuine smile at someone who looks scared lets them know that you’re on their side, and can go quite a long way.

Living by this quote is also helpful in taking down the stress of arguments and other unpleasant situations. If I feel that someone has been rude to me, but I can recount everything I did as being only kind, I can at least be confident that I did nothing to provoke it. And, referring back to quote one, that means that I can let go of it without worrying about it!

When a flower doesn’t bloom you fix the environment in which it grows, not the flower.

— Alexander den Heijer

Pretty self-explanatory! ♡

Imma keep running ’cause a winner don’t quit on themselves.

— Beyoncé, “Freedom”

And finally, Queen Bey. This lyric changed how I thought about myself, and about healing myself. I have the potential to do incredible things, to have so many new experiences that change and shape who I am. When I quit on myself, I quit on that future me that would have been. I quit on everything I would have done, and everyone who would have been effected by future me’s existence.

My existence is to be prized and valued, but prizes don’t come without hard work, dedication, and courage. So Imma keep running ’cause a winner don’t quit on themselves. 

1-rbgzf09lrj0adzlywe4d-q

 

Photo by hannah grace on Unsplash

 

Breakdowns, Guts, and Snot

I am reading Secrets for the Mad: Obsessions, Confessions and Life Lessons by dodie.  It is, among other things, very very much about mental health.  My Grandpa asks me what I’m reading, so I show him the cover.

“Are you mad?” he jokes, and I smile.

Yes.  By your standards, I am absolutely mad.

 


 

I am watching a six-installment movie with my family that I really want to see.  We watched the first three episodes last night, and tonight are watching the last three.

I watch episode four, and it is as engaging as all the rest.  We put on episodes five and six, and I very much want to see what happens.

But I don’t.

I am crying softly in my big poofy armchair (which is luckily the closest one to the TV, so all I have to do is lean my head on my hand and my face is hidden).

Tears, I’ve found, are actually fairly easy to conceal.  It’s the snot that causes the real problems.  You have three choices with snot: leave it be and let it run all down your face (an obvious no); try to, loudly, sniff it in; or try to, loudly, blow it out.

I go with a combination of options two and three.

I am crying because, through the evening, I have been texting my friend.  I am very aware that I should not be doing this, because what we are talking about could very easily lead to me spilling my guts.  And if I’m busy trying to sort out my guts and tears and snot, I’m definitely not watching the movie anymore.

But when my phone lights up, I enter my passcode as fast as I can, desperate to see the words that the notification on my lockscreen left out.  And then I type my guts into the little message bar.

The next reply asks for more of my guts.

Oh.

I do not want spill more of my guts.

I “watch” the movie and mull over what to say for a bit, trying to keep the tissue trumpeting to a minimum.  And then I decide that I cannot spill my guts now.  This is partially due to emotional distress, and partially because I have used the last of my tissues.  Mostly because of the tissues, I realize I have to distract myself and stop freaking out.

So, like any good, communicative friend would do, I stop replying with absolutely no explanation.

 

When I get back to the solitude of my room and bed, I contemplate more responses, and have a breakdown.

One of the most controlled breakdowns I’ve ever had.
It’s almost comical, really.   When I’m out of sight, I’m silently sobbing my head off, but whenever anybody pokes their head round the door I am calm and cheery.

It’s this that makes my phone start to call out to me again, daring me to make a social media post about how sad it is that I’ve gotten so good at having breakdowns.  I know I’ll never do it, but I keep thinking about it anyway.

And then I realize: I have gotten good at having breakdowns.

I can turn them off when I need to.  Well, not all the way off really, but I can store them away in a little box in my brain to deal with later.  If I’d tried to do that a few years ago, I would have tripped and dumped the contents of the box all over wherever I happened to be at the time.

I am gaining more control over things, and that’s not sad at all.

So, with a few residual tears, I do my best to box up the rest of the breakdown, and go to sleep.

 


 

 

Photo by James Sutton on Unsplash