Living with POTS

Gemma · she/her ·spanish. This is my sideblog to vent about my chronic illnesses, Postural Orthostatic Tachycardya Syndrome (POTS) and Ehlers Danlos Syndrome type III (EDS). Feel free to message me if you have any question, I'm always glad to try to help!

[potsiediary]

This shop I found on twitter has amazing pins! Check it out here

https://www.etsy.com/uk/listing/1232429105/real-life-debuff-pins-ffxiv-inspired

[chronicallypots-memes]

Mind ya business there buddy pal

[potsiediary]

When I lived in a big city and managed to get a seat on the bus, old people used to make me stand up and leave the seat to them. Some of them very rudely. Of course if I didn’t do as they said all the other people in the bus would look bad at me. “She’s young and healthy, how dare she not leave the seat to this poor old person!”

Nowadays I have a diagnosis and if someone tries to make me get up I’ll have my disability card stuck on their faces. I learned to care about myself and not give a fuck about what other people may say or think. :)

[wearingmystripes]

one of my toxic traits is experiencing immense pain and just not telling anyone at all

[potsiediary]

So. I got my ivabradine dosage increased from 5mg to 7.5mg. LET ME TELL HOW MUCH OF A LIFECHANGER THIS HAS BEEN TO ME. 

I walked for 3.5 km a couple of days ago and I was fine! I didn’t feel my heart getting out of control! I could also think and talk, not even a bit of brainfog. The only problem was climbing an incline (incline, ascent? I suck at english). My body is not used to walk so much, and I got a bit or tachycardia there. But this can easily be solved by going to walk regularly and getting fit.

The most amazing thing is that I wasn’t even tired after the walk, nor the day after. It’s like if my heart doesn’t overexercise because POTS, I’m good!

It shoud be noticed that I was fasting. And of course, I always have my beloved water bottle with me. I’ll have to try again after an hour of taking a meal (remember, never exercise just right after a meal!), to see how it will be.

So far I’m pretty excited and positive about this, things are finally looking good! :D

[potsiediary]

So the lift of my building hasn’t been working for two weeks and I live in a fourth floor (which is technically a fifth) and let me tell you, even taking ivabradine I feel like I’m going to pass out. Once I arrive at my door I have to sit on the floor for ten minutes trying to catch my breath, feeling dizzy and dehydrated. But despite feeling thirsty like hell I couldn’t drink water because I couldn’t even breath fshbfjsf. God. I’ve been in bed all day trying to get well. I know even healthy people would have a hard time with this. But for someone with POTS, this is hell.

[potsiediary]

[dravenxivuk]

[thatchronicfeeling]

Disabled and chronically ill people deserve to be treated with dignity, respect and kindness.

We deserve to feel safe.

[potsiediary]

It’s been a while since I posted here! I started my treatment with ivabradine some weeks ago. The first days my heart felt really weird, with pain and a strange sensation of heaviness, I don’t know how to explain it properly. But luckily this faded away. I still get tachycardia but I don’t think I reach the levels I once did. Still, I can hit 120-130, and I suspect this is due my deconditioning. I need to gain muscle mass again!  Ivabradine is my only option, since betablockers don’t work on me and just lower my blood pressure. My cardiologist told me there’s another medication, but it also lows blood pressure (and mine is normally low) so we dismissed the idea.

EDS is hitting me pretty heavily too and I hate my joints so much! I just wish this hot weather would stop because applying a heat blanket to my joints while sweating isn’t a pleasant feeling.

Well, gonna check the tag to see what I missed! :)

[potsiediary]

Got my first dose of Pfizer! Of course, I’ll still wear my mask (despite my country will stop making it obligatory in open spaces in a week) but I’m definitely much more relaxed now, being a spoonie with covid going around is pretty anxiety-inducing.

[impotsiblelife]

Accepting your limitations when you have a chronic illness or disability doesn’t mean you’re lazy or pessimistic. It’s more than ok to acknowledge and respect the fact that there are things you just can’t do. Don’t listen to anyone who tries to put you down or make you feel guilty for saying “no” when you aren’t able to do something. 

[positivepatton]

I don’t know who needs to hear this but you’re neither lazy nor useless, fatigue is a symptom of your illness(es) and it’s completely reasonable that a fatigued person would struggle with the things you’re struggling with

[idk-anymore-dude-deactivated202]

People will be like “Why aren’t you paying attention?”

Girl my brain isn’t getting enough oxygen I’m barely holding on to consciousness

[potsawareness]

Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition. It may not be life threatening, but it is life changing.

POTS affects up to three million people in the united states alone and many more worldwide. Despite this, it is a relatively unknown illness.

Even standing up is a struggle for those diagnosed. Infact It’s main defining characteristic is the inability for those affected to stand upright without struggle due to their blood vessels not adjusting to gravity.

Other symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, muscle weakness, joint weakness, fainting, and headaches.

Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities.

For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking can be a terrible struggle.

Many with POTS are wheelchair bound most days. Some even have to get weekly IV's of fluid to keep them upright.

There is sadly no known cure for POTS and even though some may get better with age it is a lifelong thing. But You can donate to fundraisers such as Dysautonomia international and POTS UK, which not only help find a cure but spread awareness and support those who struggle with it.

And If you would like to listen to the uplifting stories of how those that struggle with this Illness make the most of their lives, you can read that here.

Reblog to spread awareness

[chronicallychronicles]

How to explain POTS to kids & karens 101:

1. so basically I'm allergic gravity

2. my heart thinks I'm running a marathon everytime I stand

3. everything you do automatically like breathing and body temperature and things like that? that part's broken.

4. spin around really fast for a minute. that's how it feels but all the time.

5. just don't because you aren't obligated to share your personal medical details and experiences even if someone is young and curious or older and just plain rude ¯\_(ツ)_/¯

[howtobeapersonwithfibro]

Taking medications that help you is good. Using mobility aids or other assistive devices that help you is good. Respecting your own limits to maintain your health is good.

Be proud of yourself for taking the steps you need to take care of yourself, and ignore anyone who doesn't understand the importance of this.

[thatchronicfeeling]

Looking After Dental Hygiene When You Are Chronically Fatigued

Here are some things that help me. I’m sharing them because they would have been beneficial to me years ago. Maybe they will help someone else too. Please feel free to add anything else that works for you! 1) Use an electric toothbrush.

2) Sit down to brush teeth. (I hear you can also brush teeth while lying down, but I haven’t tried this yet)

3) Think about how you want to sit down while brushing teeth. What’s the layout of your (bath)room like + how much support does your body need? Can you sit lid of the toilet, or on the edge of the bath? Do you have another chair in the bathroom already? Could you add a stool? What kind of stool would suit you best? I use a wheelie hairdresser’s/barber’s stool in the bathroom (like this).

4) If too exhausted to brush teeth, use mouthwash. It can help you feel a bit better.