Good news, everybody!

I know this is very personal and it's all about my #LQTS, but I went to my annual checkup with my #electrophysiologist today, and he agrees, in light of my losing weight, I can drop my dose of beta blockers to one a little lower!

This is amazing, because while said medication makes it harder for my heart to do dangerous things, it also now means my blood pressure and heart rate are way too low. Getting fitter natrually dropped both, and now they're too low.

So yay?

To those of you with chronic health conditions that zap your energy (bonus points if you're neurodivergent).

How do you tell the rest of the world you're not only out of spoons, but forgotten what a spoon is?

By Friday, my LQTS + overwork + exhaustion from existing in a neurotypical world has me... just about breathing. Everything else is a bonus feature that requires dumping memory cores.

I’ve lived with #lqts for years… but only really started thinking about how I do life… and how others cope.

#illness #chronicIllness #neurodivergent

I hate #lqts

I’m exhausted. Wiped out! My QTc is above 500 ms and I feel like I’ve run a marathon.

Screw my body.

Placed a call to my EP’s office because I haven’t felt this crap in a long time.

Hey, folk who have #invisibledisabilities…. How do you explain to people that you don’t have the same body capabilities/endurance/needs as folk who don’t have the same challenges you do?

I’ve been thinking a lot lately about how to better explain to folk that my body is always operating at reduced capacity because my #donotdie medicine slows my heart rate and thus, while I’m fit and strong, my body tires more easily than it might otherwise do.

I can say “oh, I have #LQTS” but folk don’t really get the implications. I can say “remember that person who died from drinking an energy drink/super caffeinated beverage/too much coffee?” And they get that… but… It doesn’t translate to “I GET FUCKING TIRED EASILY AND SOMETIMES I JUST CAN’T FOR A FEW DAYS BECAUSE THE MEDICINE THE KEEOS ME FROM HAVING A CARDIAC ARREST ALSO GIVES ME SUPER LOW BLOOD PRESSURE AND LOW HEART RATE”

I’ve had some friendships end because people thought I was always bouncing because I didn’t want to hang but the reality was I was just exhausted… and some folk don’t get that I sometimes have to change plans because body…

I can’t be the only one

Thoughts?

So close… Gah.

I’ve worked out 183 days in a row, and even splitting between cardio and strength days, I’m still hitting my cycling out the park.

Sad I am not really super safe pushing it out in the real world because of #LQTS, but at least I can at home!

#peloton

Well arse.

I’m having long conga lines of PVCs….

I’m off to bed.

#lqts #heart #betablockers

Urg. My body hates me.

In addition to hovering around the mid 40 bpm all afternoon, my QTc is hovering around 500ms, and I feel like poop.

I’m going to bed because I’m exhausted. Also I fell over. And I have pins and needles. And I’ve had palpitations in extreme today.

Seriously, my body sucks.

I’m tempted to skip my meds but I know that’ll be even worse.

#LQTS #heart

My wonderful #valentine.

She doesn’t like being on the roof at all, but on Saturday, when my blood pressure was low and my heart rate was very bradycardic, she came up on the roof to help clean the gutters.

She even went up on the second floor when I was struggling, took over, and got me down safely.

I hate #LQTS
But
I love you, @amerikate xxx