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Not Just A Standing Issue!!


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I have said this at least a hundred times. I WISH this were just an issue of standing up! It is sooooo much more complicated than that. If it were I would just mosey around in my little wheelchair or get a scooter and LIVE! I tried to go to the pumpkin patch yesterday with my hubby and 3 yr old little girl. Something that should be fun and exciting and it was a nightmare. I sat in my wheelchair the whole time and my heart rate never exceeded 92 bpm and that was only when my hubby parked me right in the sun and left me there for a few, the rest of the time I was beating quietly at 70 bpm. Tons of kids, moms casing said kids and a bumpy ride through a farm that was not handicap accessible and I just lost it! I thought getting out and at least doing something normal would make me feel better! It didn't! I felt WORSE! And then I get pissed off because I can't do something so simple! It's like my brain can't process what's going on around me. This is coming from a person who used to throw parties with the attitude "more the merrier"! I got back in the car and just cried my eyes out. For the rest of the day I was done. Couldn't think straight, couldn't see and was exhausted. Ended up going to bed at 8 pm and I still feel like crap today. This has got to be one of the cruelest conditions. Sorry for the rant, but I feel like the neurological part of POTS is harder to understand than just " oh well when I stand up my bp drops and my heart rate goes nuts and I might pass out". People get that, they don't get the other. This *****!

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I totally understand. It's so hard to explain to people that standing up is just one of the difficulties of this illness. I'm going to try to go to church today, even though I can't stand and sing or pray with the rest of the congregation. Sometimes I just lie down (we try to sit in back to not attract attention). The noise, bright lights and movement are enough to bring on the fatigue, nausea, chest pain, etc. I try to bring earplugs with me, to decrease the amount of stimuli I experience. But I don't have much to do for the next few days, and could really use the spiritual comfort.

You're right. If this illness were just limited to standing, we'd all be rolling around in our wheelchairs, productively working and only having to accommodate avoiding standing. That would be a piece of cake!

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Sorry to hear you are having such a rough time. I also have to curl up in a ball in the dark after I get over-stimulated sometimes, and it's almost impossible to explain, and so frustrating that even doctors don't seem to know about this part of it. I think it's especially hard when we have little kids and we want to be doing things with them and we can't. Also, it's so hard to be there for their needs and wants when things are so challenging and unpredictable. Hang in there.

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I get set off too by stressful events and thrown into an episode at times like if I'm in the kitchen and the kids start buzzing around me I have felt like if it doesn't stop I'll go into an episode easily.

And I didn't try the pumpkin patch this year knew it would be a nightmare for sure.

But my daughter went to bird camp and they were doing this song where with a certain word they stood up another they sat down and watching all those bodies going up and down made me woozy.

I had to walk up and get daughter right after and sure enough I felt flaky. Got back into the car thank God my mom was driving because I just felt myself getting weaker and weaker as if I would just disappear into a black hole of weakness just from watching those other bodies do what I knew I could not.

The trip home is just down the road and thank goodness in that time I crumpled in the back seat of the car and felt myself withdraw into myself with the weak feelings I was able to emerge get up and walk into the house when we got home lay down and collect myself.

I still don't understand the psyhcosomatic connection going on here. It is unbelievable how much our feelings trigger bodily reactions that just feel as if they are spiraling out of control and are very scary at the time.

If we could just wake up and have our lives back it would be a miracle.

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I have brought this up as a Major symptom when I had my 1st consult with Cleve.Clinic nothing much was said except they have heard of it with other suffers. Which didn't really give me a reason as to what or why this is going on. I call it overstimulated by life, its so similar to an anxiety attack that it must be brain chemical related. Too much or even a normal amount of stimulant Noise, Visual, Temp, Movement sends me into a deer in the headlights . Having to consistently have a balance of minimum everything, you basically have to become a hermit even though you don't want to!!! . I know we can't just lay around in the dark in a quite house especially if we have children and families.Maybe thats why younger adults have a quicker better chance at recovery they don't have the obligations and responsibility we have and they can mentally and physically rest.

I have no suggestions besides avoiding alot of situations but thats no fun, so I just go everywhere I want to now ,and know its just something that is going to happen just gotta live.

And it is definitely a cruel illness the one that makes you look at life from a different view and it slows you down to the point of where you can almost not make any more mistakes in your life ( Meaning all you have to do is sit around and analyze everything in life).


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