Hi.

Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

I overdid it

I overdid it

Yep, I overdid it. It's rare that this happens to me (to this degree) so I keep up this facade in my head that I'm still healthy and can do anything I put my mind to. I completely misjudged this one.

*Let's back up a little bit*

I've had a hard time falling asleep and staying asleep for a while now. My 'normal' sleep patterns allow me to fall asleep around 4am and I wake up around 10am (if I'm lucky). In the past year, I keep waking up in the middle of the night (I guess it's technically morning), a few hours after I've fallen asleep - covered in sweat and overheating. It's not fun. So I throw off my blanket and do my best to fall back to sleep.

When I get tired - I get extremely cold, my hands turn a grayish/blue color, and no matter how many layers I put on: sweatshirt, blanket, fuzzy robe, and socks...I'm still cold. Chilled to the bone.

Now let's fast forward to the night before my two-day conference. I couldn't fall asleep. I tried all my normal bedtime routines and nothing helped. I finally fell asleep around 5am and had to be up at 6am so I could get ready and then drive over an hour to get to the conference on time. I woke up feeling sluggish, but that's no different than how I wake up after 10 hours of sleep. I prepared my coffee, took my morning medication, and got ready. I still felt fine. The conference started with a continental breakfast at 730am and I didn't leave the conference until 7pm. I wore the required business casual attire (a nice shirt, sweater cardigan, dress pants, and men's dress shoes) and I froze in one of the conference rooms (my coat and scarf weren't enough to keep me warm). I carried my medical backpack most of the day and a the conference bag with all the important materials in it). I met a lot of absolutely amazing people! I am so glad that I went. But my body was SCREAMING at me all day.

I did my best to ignore it but by the end of the 1st day of the conference, I couldn't help but cry from the amount of pain I was in when I got into my car. My shoulders were so tight it hurt to move, my knees were angry, my legs felt so heavy, and the tears began to slowly fall from my eyes. It took me a few minutes to compose myself and then realize that I still had to drive about 30 minutes to spend the night with an old friend. I drive stick shift.

Every movement I had to make with every shift and push of the clutch...made me choke back tears. I blasted my music and the bass from my subwoofers provided some relief (the vibration on the back of my seat felt like a massage chair and the loudness of my music helped to calm the voice in my head reminding me of the pain I was in). I arrived at my friend's house and slowly gathered my things, dreading having to carry them inside. I sat in my car for over 10 minutes. I went inside, changed into comfortable clothes, and caught up with my friend that I hadn't seen in at least 4 years. It was wonderful talking with her! At 10pm, we decided to call it a night. I went down to the guest room, and despite how exhausted I was, my body didn't let me fall asleep until almost midnight. I had alarms set for 6am to wake up for the second day of the conference. 

I woke up to the alarms at 6am, tried to move, and realized there was no way I was going to be able to attend the second day of the conference. My shoulders, neck, and legs were on fire. Despite my best efforts, the $110 I spent on the conference was only for 1 day instead of the full 2 days. Money I don't have to spare because I don't have a job right now. Hopefully the connections I made on the first day will help in my career pursuits. Hopefully it was worth the money I spent and the physical pain I endured.

I went back to sleep and woke up around 10am (my normal wake up time). When I got out of bed, my legs were still heavy and I had a difficult time moving them. My shoulders and neck still ached. This was not going to be a fun hour and a half drive home. 

I blasted music as I drove through the rain. I was exhausted and just trying to focus on getting home. I pulled into my driveway and called my mom back (she had called the night before), we talked for 15 minutes as I sat in my car debating taking a nap before attempting to carry my things into my second floor apartment. 

I decided against napping in my car because I wanted to get inside to snuggle with my cats (yes, I'm a crazy cat lady and proud of it). I gathered up my backpack, conference bag, and overnight bag and headed toward my apartment. I saw one of my cats waiting for me in the window and it made my heart smile. 

I made it up the stairs and into my apartment. My heart was POUNDING in my chest and I was out of breath. I really hate POTS. I really truly hate POTS. 

Tossed my things in the living room, drank some gatorade, turned on the Hulu and proceeded to sleep from 1pm until 6pm. I woke up, still exhausted and nauseous. Nothing sounded appetizing but I forced myself to eat because I knew I needed food.

It's now 10:36pm and I'm more awake now than I was at 6pm. My body still hurts. Normally I'd go to the ER for IV fluids after a day like yesterday or today. It's rare that I feel the need to go. But I'm refusing to go because I know how I'll be treated when I get there - I'll wait for 2-3 hours, the doctor and nurses will look it me like I'm crazy because I know I just need 2-3 bag of saline and I'll be on my way. They treat me like I'm a drug seeker - "Why do you feel you need IV saline?"...and I want to scream back "BECAUSE I KNOW IT WORKS!!! Because I HAVE this condition and because I LIVE it EVERYDAY. I don't WANT to be here, just give me saline and I'll be on my way." They'll make me take a pregnancy test, even though I tell them I'm a lesbian and there is ZERO chance I could be pregnant. And when they discharge me, the diagnosis and care instructions will be for "Anxiety" and "Dehydration"...Screw you. Just, screw you. Going to the ER isn't worth it anymore. I give up. I'll just drink as much Gatorade as I can stomach (which isn't easy) and I'll sleep for the next couple of days because that's the only way to try and regain my strength.

This sucks. POTS and EDS aren't fair.

I over did it...

When Your Friends/Family Just Don't Get It.

When Your Friends/Family Just Don't Get It.

"I miss my old life"

"I miss my old life"