Today marks the first day of Dysautonomia Awareness month, and tomorrow is the last day of Invisible Illness Awareness week, so I like to think of today as the “Invisible – Dysautonomia Vortex” where the two cross. The theme for Invisible Illness Awareness Week this year is “This is Chronic Illness” where people are encouraged to share a glimpse into their daily life. If you’d like to participate, more information is available here.
I decided that my contribution to this year’s theme would be to share an average day for me, so a week ago (not this week, as my mom was in town and those days are anything but “average”) I kept a journal of what I did that day to share with you. This is an average “good” day – I made it to work for a full (part-time) day, no trips to the ER or Urgent care, I didn’t fully faint, and I didn’t feel like I was having a heart attack. As you’ll notice, I have included non-illness entries, as my life is not dictated by my illness.
5:21 am – wake up to this attractive view:
5:40 am – Take quick EKG. Check fitbit for sleep statistics. Only woke up 22 times last night. I AM THE BEST SLEEPER EVER.
5:45 am – Take dog out, down electrolyte drink.
6:15 am – Shower. Run out of energy after only shaving left leg. Apparently it’s going to be a “pants” day. Take beta blocker.
7:30 am – Too many palpitations to play with dog, wonder when beta blocker will kick in. Sit in chair and laugh while dog plays by himself. Smooch on dog before leaving for work.
9:00 am – Ignore co-workers: still too many palpitations to have a normal conversation. Try for “cool gal” head nod instead. Fail miserably. Again wonder when beta blocker will kick in.
9:36 am – Moderate pain and fluttering in chest. Very uncomfortable, but had it before, so not worried. Again wonder when beta blocker will kick in.
9:49 am – Finally able to converse with coworkers. Trade Adam Sandler movie quotes.
9:58 am – Suddenly overwhelmingly tired, too tired to stand up. Beta blocker finally kicked in. Make cup of tea to combat fatigue.
10:42 am – Palpitations from caffeine in tea. Debate taking another beta blocker.
11:45 am – Trade slightly inappropriate sexual comments with coworkers. Working in an office full of ladies has its benefits.
12:13 pm – Spend 20 minutes trying to think of that one word, you know, that one word. It means not using correctly. Stupid brain fog.
12:25 pm – Realize I only brought a granola bar and apple for lunch. Stupid brain fog. Eat granola bar and old suspicious looking ketchup packets in work fridge. Pretend its donuts.
1:35 pm – Spend another 15 minutes trying to think of that one word. You know, it means using incorrectly. Stupid brain fog.
2:27 pm – Adrenaline rush when silence in office is interrupted by loudly ringing phone. Spend next 23 minutes convincing my body that I don’t need to beat up, or run away from, said phone.
3:11 pm – Severe tingling in left foot, unable to fully extend. Haven’t had it before, so slightly worried.
3:35 pm – Misuse! The word is misuse!! Down another ketchup packet in celebration.
4:02 pm – Stop to get take out since I forgot most of my lunch. Wait in line to order.
4:09 pm – Leave restaurant without food, after having blacked out from standing too long. Lie down in car while nausea and lightheadedness subside.
4:46 pm – Arrive home from work. Give self pep talk to climb stairs up to bedroom. Make it up stairs without issue. High five dog in celebration.
4:48 pm – Nap.
6:00 pm – Dinner.
7:00 pm – Take dog for walk. Doing okay, so slow jog with dog. And….
7:00 (and 15 seconds) – ….I’m a fricken idiot. Try to finish walk without falling down.
7:15 pm – Soothe after-walk palpitations with delicious mango popsicle.
7:40 pm – Start 7 minute abs workout.
7:47 pm – Stand in front of mirror searching for evidence of abs. No such luck.
8:08 pm – Take handful of pills and supplements.
8:32 pm – Try not to puke from meds.
9:26 pm – Watch
Friends reruns something that makes me sound smart.
9:48 pm – Fall asleep to this adorable view:
11:04 – Wake up with tachycardia and adrenaline rush. Accidentally grab dog’s weiner while feeling to see if he’s on bed. Find out the gross way that he is.
1: 38 am – Wake up with palpitations and shortness of breath.
3:26 am – Wake up with chest and neck pain.
5:17 am – wake up to this gorgeous view.
Friends: There are lots of events going on around the world for Dysautnomia Awareness month. Tonight, the Niagara falls will turn turquoise in honor. Be on the lookout for other events!
“Life is not a problem to be solved, but a reality to be experienced.” – Soren Kierkegaard
Smell ya later.