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.
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?
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?
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.
For the past week I’ve had anxiety about leaving the house alone.
I’ve been scared of going out and having another depressive episode and breaking down in public.
I’ve managed to walk the dog just fine and without worry, but anything bigger than that I’ve avoided.
I’ve needed to run an errand all week, but I’ve put it off and put it off, my chest tightening and pulse rising at the thought of it.
Today I made a small accomplishment and convinced myself to leave the house while my husband was at work. I made a trip to the post office and the grocery store. And despite some chest tightness, and tears threatening to well up in my eyes, nothing happened. I didn’t have a break down.
Today, I made it. Hopefully that’s a step forward in making it out successfully again.
It’s been too long since I posted.
For a long time I was feeling pretty well. No major symptoms from any physical condition; I even stopped using my cane.
Just my depression, fluctuating in and out, kept me down.
I stepped down from my PhD to an EdS and graduated. I didn’t even have a breakdown over it. I met with my therapist every two weeks and it kept me even. Even to the point that I considered not needing to see her so often.
Then I moved. And I haven’t seen a therapist in two and a half months.
And I miss it.
My depression has been overpowering lately.
I end up crying every time I leave the house alone. I’ve had breakdowns in Target and Michael’s, and driving down the road.
The first time I was filling my Prozac prescription, waiting on the CVS in Target. I walked around the new store in my new town, with it’s different selection from my familiar University-town store, and everything went sideways. Intrusive, negative thoughts about not deserving new clothes because I don’t have a job yet started it. At least that’s the best I can pin-point it. Then they didn’t have pants I wanted to get for my husband in his size. Then… I don’t know. But it was overwhelming. Sadness, emptiness, self-depreciation. Tears welled up in my eyes and I struggled to hold myself together.
For four days after that I didn’t go out except to walk the dog. I didn’t shower or basically take care of myself at all; I ate because my husband made me dinner. I woke up when I physically couldn’t sleep anymore…and very often napped again shortly after. Things only turned around when my husband was home.
It’s been mild ups, and downs, since then. Sometimes I feel normal again. Mostly I feel empty and uninterested. Tired; Fatigued. Occasionally the nasty intrusive thoughts of not deserving, not being valuable, not competent, and never improving rear their ugly little heads; despite recognizing I don’t deserve these thoughts and distracting myself from them, I haven’t been able to silence them completely.
Then today I managed to convince myself to go out and run some errands. I forgot the post office was closed for President’s Day. And the the glue that held my cracks together began to become undone. Everything I needed from Michael’s, I got, and yet I still left holding back tears.
Depression is like that I guess. It eats at your edges. It sneaks in and crushes everything around it with wave after wave of apathy and negativity. It isolates you.
And to fight that I’m trying to blog again. To reach out and break the silence that depression tries so hard to impose.
I want to resist. To fight.
The world around me seems to be erupting in flames. Burning. Burning with hatred and fear. Burning with passion and resilience. Burning.
Every day I watch the fire touch every aspect of my life, of humanity. And deep within me I feel the fire catch. A passion for humanity; a visceral need for humanity. And I don’t know how to channel it.
By appearances I am not the one being targeted. But I am. If only because at the very least, if one of us is is targeted, we all are.
And I feel so helpless. So small. So insignificant. In facing the wall of flames, what am I?
It breaks my heart that it has taken such a raging, burning fire before we started one of our own to control the burn. That I don’t know how to fight back. That I am not stronger, smarter, more powerful in this world. But I take the words of advice I was given: “write” and I run with them. Because what else am I to do? I might not know what to say, but I must say it. And I must remind myself: from fire comes growth. And with growth there is hope. Hope for a better tomorrow. Hope for unity. Hope for humanity. 
And I breathe.
One breath at a time as I move forward.
Originally posted on my academic blog, Life is Learning.
Its been a long time since I’ve written here, and I have no excuse other than depression. Depression makes you miss a lot of things, disengaging with the world with a brain full of fog.
I’m breaking my extended silence because of an exciting opportunity. An opportunity that deserves more attention and support than I have been giving it; something which I hope writing this is a small step in the positive direction of rectifying.
There is a group of volunteers that host conversations related to ePatients–engaged, empowered (and a few more “e”s I can’t recall right now) patients. I’ve mentioned them briefly before. These conversations are driven by the chronically and critically ill, about topics that are important to them.
Our next conversation is about health literacy: the knowledge base, practices, and understandings about health. But this is not a conversation being dictated to us by healthcare professionals or healthy people; no, this is a conversation about the knowledge and practices we as patients need, from our experiences and points of view.
And this is a conversation you can join.
I’m so glad I see my therapist tomorrow. I’ve never considered myself anxious, but right now the anxiety is almost paralyzing. I’m too stunned to even cry. Too scared to plan anything for the future; but I do know I want to make it better, brighter, not what is staring down the barrel at us right now.
To everyone reading, remember, you matter.
We are in this together.
I will fight for you.
…just as soon as I can.
Here are some incredibly wise words from Scottx5. He shared these in a comment, but they deserve to be more prominent. And repeated frequently.
Illness has a lot to do with sense making. That first you are a person and that matters. And you are a person with the ability to reason and solve things and even if the answer doesn’t “fix” you back to where you want to be, you are an active participant.
These words pull together my whole life.
Thank you for sharing them Scott!
the best liar you know 