I’m just so tired

I’m just so, very, tired.

I met with my new PCP a week and a half ago, had blood work done a week ago, met with my new GI specialist today. I’ve had a lot going on.

And every night I’ve laid in bed wondering how much more of this I can take.

How many more tests with no answers can I handle?

How many times do I have to meet with new doctors and explain my history and symptoms again, and again, and again? Can I do it again?

I’m just so very tired.

Knowing *too* much

I have an appointment with an internal medicine primary care physician on Thursday. It’ll be my first doctor’s appointment since I moved. It’s a first step in finding my new PCP, someone to take over my complicated medical case.

I’m anxious about the appointment.

How do I introduce a new doctor to me?

Do I?

This morning I was woken up with my left leg kicking and twitching. It’s happened before; it’s one of those mystery neurological symptoms that happens sporadically- leg twitches, sometimes shoulder and arm twitches and jerks. I’m pretty sure they’re myoclonic jerks, but I’ve never had a doctor tell me that. I’ve never had one show up while at a doctor’s appointment for me to be able to prove it happens.

This morning they were particularly persistent and strong. The build-up, the sting, the flail. Jerk, jerk, jerk; kick, kick, kick. Toes flexing at odd angles. Nothing I can do about it. They kept me awake, and annoyed. I think the whole thing lasted for less than 10 minutes, and afterwards I was exhausted, depleted, but definitely awake.

And I laid in bed thinking about my upcoming doctor’s appointment. How do I handle this? What do I tell this doctor?

In my experience, you can’t walk into a doctor’s office knowing too much. You have to be ignorant and let the doctor discover things on their own, to tell you.

If I walked into a doctor’s office and declared I was having myoclonic jerks, I would be suspect of spending too much time on the internet. Of researching too much. Of being a hypochondriac. After all, who am I to know medical terms, to know what is going on with my own body?

I saw this with my endometriosis. It took me years to get diagnosed, despite insisting I had the condition when I first started seeing a gynecologist (in fact, being the whole reason I was seeing a gyn in the first place).

Again when I reacted to the medication they gave me to abort migraines, and I temporarily lost my vision,  the medical professionals at the ER refused to listen to my insistence that the medication was to be blamed. Hell, they heard migraines, did a simple vision test, and refused to do anything else.

Over the years, I saw the eye rolls, heard the sighs, noted the impatient and patronizing platitudes every time I made a suggestion or requested a specific test.

When I was diagnosed with gastroparesis, I was aware of this phenomenon. It took months of visiting doctors suggesting something was wrong, not accepting the simple answer that didn’t quite fit, seeing multiple doctors before I was diagnosed. I was concerned about gastroparesis but never mentioned the condition by name, never suggested we do a gastric emptying scan. Terrified that if I did I would get dismissed and set any diagnosis back, potentially for years.

And here I am again. This time with a new doctor, one I don’t know at all.

Maybe I’ll get lucky and I won’t need to. Maybe I’ll get a doctor who listens to me, who accepts that I have the capabilities to research my health. Maybe I won’t. How do I know?

Come Thursday, do I bring my big binder of medical records? Do I fill them in on my history? Or do I move forward, vaguely detailing the symptoms I’m currently having and let them take the reins from there, ignorant of what has come before?


Am I enough?

I’ve had bad fatigue today. Every ounce of my body feels exhausted. Heavy.

I had a meeting in the mid-morning and then melted into my couch not bearing to move more than necessary… while being restless at the same time, tossing and turning while my body refused to find a comfortable space. I managed to nap, which served not to alleviate any of my exhaustion but to eat up a few hours of the day. I even mustered up my strength to walk the dog and help make dinner.

All in all it wasn’t an unsuccessful day, but still I felt down. I felt ill.

And while eating dinner, watching my favorite YouTube channel, I laughed. It was a moment of lightheartedness and joy.

And immediately I questioned myself. If I am enjoying myself, if I am feeling alright–right now, in this second–, if I am not at my worst, am I sick enough?

Am I sick enough?

Enough for what, I don’t quite know. Sick enough to be considered chronically ill, perhaps? Sick enough to consider myself ill when other’s have diagnoses? have worse symptoms?

What is sick enough?

I don’t know,  and still it is a thought that crossed my mind, and not for the first time.

Living undiagnosed, with mostly intermittent mild to moderate symptoms, and functioning–even if not up to the standards that I remember or that I wish I could be at, even if I feel dis-abled at times I am not disabled… it makes me question myself, my experiences. Am I enough?

I have a doctors appointment next week. I’m meeting an internal medicine PCP, I’m hoping to make my new PCP. I set the appointment up as a physical, 1) because I haven’t had one in a while, 2) when I set it up I wasn’t having any specific symptoms again, and 3) how do you set up an appointment when you have no idea what is wrong with you?

What do I bring up at the appointment? How do I not overwhelm this doctor with my medical-self? With my history? with my current situation? with my nagging fear of I am not enough?

Faces of Depression

My depression has many faces.

Most prominent is apathy. I lose interest in everything. I disengage. I can’t find any motivation.

Apathy pairs with sleep disturbances. With no interest in doing anything else with my time, I sleep. I sleep in, I take naps, I go to bed early. I can’t bring myself to function during normal hours.

Note, this oversleeping and constant tiredness is different from my fatigue, which is an extreme exhaustion and lack of energy throughout my body. Like everything’s heavy and takes too much effort to use. When I’m fatigued, even raising my arms or keeping my eyes open requires tremendous effort. Sometimes fatigue joins the depression party, sometimes its just sleeping. Lots of sleeping.

Then there is the depressed mood. It breaks in between bouts of apathy where I feel nothing to shower me in sadness. I cry for no reason. Or more accurately I emotionally breakdown and feel like I’m crying but I rarely ever produce tears. I well up my face, I pout, my eyes turn red and sting. But I have a hard time letting all that emotion actually go and release in tears.

And the worst face of all, the ugliest face: self abuse. I can be downright cruel to myself. Anger turned inward. I don’t let myself catch a break. Everything that goes wrong is my fault.  Therapy really helped with this, and now that I haven’t been going, haven’t had someone reinforcing positive self talk and taking it easy on myself, I’ve noticed the becoming ever more present.

I’m not sure if it’s a face of depression or the ugly body that sums it all together, but my depression is a pit. It doesn’t want me to be happy. It resents every breakthrough and every fleeting second of caring, of self-worth, of cheer. It’s a vicious cycle that keeps bringing me down, no matter how hard I scrape to have a moment of breath and clarity, a scrap of joy. This multifaceted beast uses each visage to keep me down.