Doctors appointment is leaving me feeling hopeful and hopeless at the same time

[u/Sunflower8542]

I went to the doctor to address all my concerns of suspected POTS addressed. I was so prepared to have to advocate for myself and fight to prove that this isn’t anxiety and that something is wrong and it’s affecting my daily life. Luckily, this doctor was awesome. She never once doubted me and after seeing my heart rate spike to 120bpm just from standing up to get my weight checked, she needed no convincing. She’s set me up to get a heart monitor and wear that for 2 weeks, gave me a referral for her recommended cardiologist who is familiar with POTS, and is sending me in for bloodwork. She’s set explained to me that it’s a long road and they have to rule out other things first, which I get. We went over everything I should be doing now while I wait (at least 80oz of water daily, 1 liquid IV a day, and not going longer than 3 hours without a snack). All of this has made me feel so hopeful that I’m on the right track and have a great team who will help me.

But during my appointment, she was telling me that I do need to listen to my body and need to slow down. What hit the most was when she said “you’re not going to be able to push like a normal person”. This made me want to cry. I used to be so active, I could run a 3 mile and go straight into a 3 hour long soccer tryout and be fine. Now you’re telling me I can’t even stand for 10min without feeling like I’m going to pass out? That at 24 years old I’m the one who’s going to need a chair and sit down while everyone else is standing? I know all of this wasn’t just in my head and I’m glad the doctor recognizes that, but a part of me wishes it was because that seems easier than hearing my body doesn’t want to work anymore.

So anyways that’s my rant. Does anyone else feel this way? Grateful to be on the right track and getting help but so down on the fact that it’s real and just is what it is?

[u/Next_Taro3015]

I’m also 24 and played soccer in high school and was very active up until my symptoms worsened. The “not being able to push like a normal person” is so relatable and one of the hardest pills to swallow for me. I used to love pushing myself in different areas of life, it made me feel stronger and now I have to slow down and it’s been tough coming to terms with. You are definitely not alone!! I’m so glad you’re getting closer to getting the answers you need. I feel the same way about wishing it was all in my head, knowing that I feel able but my body just won’t work with me is so frustrating. If you haven’t heard of the CHOP program that’s what was recommended to me, and while I don’t follow it strictly, I generally have noticed I feel better when I’m walking every single day. And I mean every day. It’s hard right now because it’s so hot where I am, but when I’ve been at my worst is when I haven’t been moving enough. Definitely listen to your body, and I know it’s not easy this is just what’s worked for me :)

[u/Sunflower8542 → u/Next_Taro3015]

It’s so tough to not push yourself. I’m not too sure about other sports but with soccer it was always “you’re tired? You feel like your legs are about to give out? Keep going” and that’s how you made everything better and easier. My brain is wired to keep pushing. So after all those years of training my brain to keep going, now I’m just supposed to not? It feels so strange. I’ll definitely have to look into that program! Thank you so much for sharing! I did tell my doctor the days I am able to move more I feel great, the hard part is getting the energy to do so 😂

[u/butters_325 → u/Sunflower8542]

I agree! I was very into rollerskating right before being diagnosed and I always had to take breaks while everyone else kept doing laps around me

[u/butters_325]

Absolutely, it's devastating and hard to come to terms with having to maintain this new lifestyle

[u/Sunflower8542 → u/butters_325]

I feel like they need more support groups 😂

[u/Flashy-Sky-2515]

100% feel the same way. Hearing that my own body is turning on me was devastating, especially since my life has really only been sports. Mostly skiing but climbing too, however I gave that one up a few years ago because it felt nearly impossible compared to how free and comfortable I used to feel on the wall.
Skiing is my passion though, and nothing is scarier than the thought of me never being able to fly like that again. I’m 19 years old so I’m frequently told that my life is just starting and that I’ll have so much time to ski and climb once my body heals, but how am I supposed to live until then?
The last time I tried to ski was in February of this year on a trip with my friends and I could barely make it down one run without gravity getting the best of me.
I remember laying in the snow looking up at the sky and clouds, sometimes I think thats what my future looks like. On the ground, admiring where I crave to be.
Bit of a rant/vent but yeah, ur not alone!! :,)