Dancing

[Tessa]

Hi

I love music. I used to be a person who was unable to listen to music without moving part of her body... And loved to dance until late at night (stopping to rest, eat, drink, etc.)...

On a Christmas Eve some years ago, we had a nice family party. We danced for a while and everything seemed to be Ok. but then, the following day, I felt sick (you know all the symptoms we have with POTS)...

I had no idea about POTS but my body was telling me that I could not dance... (That was the first step to a Potsy life of disabilities...)

It has been very sad for me not to be able to dance anymore. I felt so sick that day (The whole day in bed, unable to move, dizzy, with nauseas, headache...) that I had not dared to dance again... until today.

Today (while I am without treatment because I am waiting for a special blood test), I could not resist to dance slightly during (about 30 seconds)... Suddenly I was feeling my heart beating too fast and decided to check my hr: 95 bmp (this has not been this way for a long time as since the treatment started my hr was about 60 bmp at rest)...

Isn?t 95 bmp not a lot just for a little dance of 30 seconds?

It might sound stupid but dancing is something that I miss a lot. I know, I should not have danced. In fact, sometimes I even cannot keep standing without feeling dizzy, lightheaded, with chest discomfort, etc...

What about you?

Can you dance?

Did you dance before and how do you feel not being able to dance again?

What do you feel when you dance?

Comments are welcome.

Thank you for participating.

Take care,

Tessa

P.S.: With regard to the poll, I hope to have selected the most accurated answers, but please, feel free to improve it. thank you.

[Mrs. Burschman]

How about: "Yes, but not very well and I generally look stupid."

[Tessa]

That?s a good one. Thank you for making me laugh

(I was feeling a little down because of this)

Tessa

[Tessa]

Oops!

I am sorry, I have added your option to the poll but did not notice that it would put the votings to zero...

I apologize

I voted for the following options:

No, I cannot

I would love to, but my hr is too high.

[Sunfish]

tessa -

i added your votes back in.

i certainly cannot dance anymore in any sort of way that would be considered dancing. when i'm doing "well" i would be able to move a bit to a beat, clap, tap my foot, etc while seated (as i do this a bit at church at times when able to go....just recently been able on occassion for the first time in over a year. yippee!) but nothing standing as i can't stand for more than a minute or two regardless of what i'm doing. i might be able to dance for about a minute as i actually do better moving than standing still but that would be it & would be a bit tricky with all of my tubes & wires so in practicality not really.

i did do some dancing at times in years following my initial dysautonomia diagnosis (diagnosis varied depended on what point in time it happened to be). i used to dance a lot via my involvement in musical theater & actually started fainting a few weeks before one of the shows i was in my senior year. at that point it was very episodic & i didn't have a problem with dancing in the show at all. in fact i tended to always to better the more i was moving. after high school any dancing was just social and not super often but as long as i wasn't in the midst of a flare-up of sorts i wasn't someone who struggled with exercise intolerance in my earlier years of diagnosis. it's still not the issue for me that it is for many; i just can't be upright enough and there are only so many athletic pursuits that occur from a flat/ reclined position. i rowed & ran years into my diagnosis & only even had problems when i stood still to stretch after, was waiting to carry the boat in, etc. even a few years ago i would have to use a wheelchair to get to the pool but could then swim a mile without difficulty. and honestly i still think i could swim some if i were allowed & had a pool that was easy to get to; unfortunately it's a no no with all of my tubes & wires. but i digress...

my point is that trouble with dancing would tend to go along with exercise intolerance as it's certainly a type of exercise. a heart rate of 95 certainly isn't something that in & of itself should keep you from dancing but if you're feeling horrible that's obviously a different issue. with some limitations it's more about how you're feeling & the affect it has on you after the fact than about the actual numbers. there probably are some healthy folks who would have the same heart rate after a bit of dancing if they don't do it often as it's only 15 bpm higher than the upper range of what's considered a normal heart rate. this doesn't discount that you felt poorly but rather to hopefully reassure you not to worry about the number itself.

i'm sorry that something you love so much is now so difficult. the fact that you weren't on your meds when you danced a bit though makes me wonder if it would have been better if you'd still been taking your meds. as long as you don't faint & your docs haven't told you that you have limitations in your activity level you won't actually hurt yourself by giving it a try again when you're back on your meds. i would just hate for you to limit yourself more than necessary & you never know. it may not be something you can do as much as before & you may pay a price afterward but it may be a trade off that is manageable to be able to do at least a bit of what you enjoy. any conditioning you are able to do - even while seated or lying down - may help a bit too as it will keep you in better shape. it won't change/ fix everything but it may help just a tad.

hang in there,

melissa

[flop]

Hi Tessa,

the sort of dancing I do is probably a bit different to the sort that you love but I'll tell you about it anyway. When I was younger (up to age 16) I used to take a lot of dance classes - ballet, modern, jazz and tap. That was along with swimming competitively and playing hockey. At university I kept up a serious amount of exercise until a knee injury stopped me for over a year.

When my POTS was first diagnosed my cardiologist told me that I must stop exercising as the fitter I was the lower my blood pressure would get and the more I would faint.

Several years later I have put on a lot of weight and got really rather fed up with constantly needing to buy bigger clothes (I'm not obese but I am overweight with a BMI of 25). A much older friend of mine had started to learn tap dancing at the dance school her daughters attend. I thought it would be fun to go along to a beginners class and do some of the basics and see how much I could manage. Now, 18 months later I usually get to a class every-other week and we are preparing 5 dances to perform in some shows in the spring.

I find it hard work but I have a few tricks that help. I make sure that I have loaded up with salt and water for several hours before the class, I wear my 40mmHg compression socks, I buy my dance tights/leggings a size too small so they are super tight on my legs and abdomen.

I think I manage because all the dances are less than 3 mins long and they are quite active so my calf muscles are busy pumping the blood back to my heart from my feet. I try not to let my HR get above 150 as I tend to feel ill then (it can get to 170 just standing still) and I often sit down and sip sports drinks between dances. My teacher knows about my medical problems and only once have I fainted in a dance class and that was whilst standing about talking about what steps we were going to fit in to the next bit of music!

I think that listening to your body is important, and if it is telling you to move with the music then have a go. Just do things gradually and don't do too much the first time - see how your body responds and if you are okay slowly build up the amount you do.

Take care,

Flop

[Ernie]

Hi,

I took ballroom dancing for 7 years with my husband and I would dance every Satuday night. I could dance 6 hours non stop.

I miss dancing. I dream that one day I will be able to dance again.

When doctors tell me that I faint to make a show I feel like telling them that I used to dance to make a show!

[pat57]

I put yes, I feel best when I'm in motion.

NCS here.

[morgan617]

HAhahahahahaha............ morgan

[Mrs. Burschman]

Melissa:

I have the perfect sport for you! Luge! You do it laying down!

But wait. The cold might be a problem. Scratch that.

Oh well. I tried.

Amy

[Maxine]

I used to love dancing-----I miss it. I was pretty good............ I took dance when I was younger, and did well--------- Ballet, and I was still doing moves until Dec of 2000, then I crashed with POTS.

If you see my signature line---dancing would be dangerous for me now. So I'm guessing it's a NO for me, but sometimes In my mind I do. It makes me sad to see dancing on TV, and I usually change the channel right away---it really bothers me.. I loved dancing so much that watching it made me want to get up and dance. All I have to do is twist the wrong way quickly, and I'm in trouble. It's more then POTs issues for me.

Maxine :0)

[SunsetParadise49]

I took ballet and jazz before I got really sick, so dancing was a huge part of my life. I voted yes, but not very long because I can dance a teeny bit when I'm having a good day. Sometimes even though I feel terrible (health wise) I will put on some music and dance especially if I'm emotionally having a bad day...it helps me feel better mentally even though physically I end up crashing.

[yogini]

Tessa, I don't think a HR of 95 is too bad. Some of this is trial and error, maybe you could try dancing for a little period of time and see if you still feel sick the next day.

I used to go out dancing til the wee hours of the morning many nights before I got sick. I can exercise, so I could probably dance for at least a little bit..though I haven't really tried since getting sick.

Flop, I'm surprised that doctor told you not to exercise!

[Sunfish]

thanks for the grin amy!

melissa

[MomtoGiuliana]

I took belly dancing last winter and did pretty well with it. I wouldn't push myself, but most of the dancing we did was gentle movement. I would guess that there are some of us who can do this as long as we know where our limits are. I remember an episode last winter dancing to ballet music with my 4-year old and feeling pretty awful afterwards. Exercise IS important for POTS, if you are able to do it at all--just have to take it easy.

[Maxine]

I suppose I could dance in water---LOL--- I just need to watch my body mechanics, as I need to watch my spine.

I had to quit PT because I got really sick with a virus. I'm better now, so need to start back up.

Maxine :0)

[Tessa]

Just a few words to tell you that I have read your inputs up to now, but I am unable to answer them all because I am feeling really sick.

When I danced it was my first day without medication (and yes, I did not feel good dancing)

Since then, my hr has increased a lot. Today I had 102 bmp at rest and increasing plus pre-cordial discomfort, fatigue, nauseas, headache, pre-syncope symptoms... I have been in bed the whole day and just connected to read your posts and give an update on my health.

We have been considering going to the ER but the medication given at the ER would oblige me to cancel the test on Monday... We?ll think about if I do not improve.

Please, continue participating. I?ll post again the moment I am feeling better.

Thanks for your contribution,

I am going back to bed.

Love,

Tessa

[SunsetParadise49]

I hope you feel better soon Tessa!!!

[lostkendra]

I love to dance. Country dancing is my favorite. Nothing like a two step or swing dance. I use to be able to go to the club and stay all night. I did not say dance all night. i was out every weekend.

Now I'm out once every month or so. When my feet just can't help but dance. Since I slightly crazy, if I'm standing when I hear a good song, don't be surprised if you find me dancing in the aisles at Walmart.

Of couse, lately you don't find me on my feet often, but I did start dancing today at work. My co-worker looked at me and asked if I should be pushing, so like a 'good girl' I stopped and mopped for about 30 sec before I started singing the song instead! I'll show them, POTS will NOT get me down!

Kendra

[Tessa]

Thank you for taking part in the poll.

It has been very interesting to read your answers and to see the results. It seems that we have been obliged to cut on many aspects of our lives that we loved... But some of us can still manage to dance for a while.

That?s good.

Thanks again for your participation,

Love,

Tessa

By the way, I am still without treatment, waiting for some tests on Monday. Still a very high hr but at least not chest pain any more (which is a great change).

Thanks for the good wishes, SunsetParadise49

[icthus]

I can dance ... with my eyes closed, laying in bed, surrounded by terrific music, wearing great clothes, and really happy.

It's hard to want to do something really badly and not be able to do it because of something beyond our control. Life is hard.

[persephone]

I love to dance! I love ceilidh (Scottish country) dancing at balls and posh formal do's, but also having a good foot thrash to some proper hard core techno music. I guess this is what happens when your older brother works in the Drum n Bass music industry!

[Angelika_23]

I used to love to dance. I actually met my husband swing dancing! We used to dance all night at dizzying speeds. I used to Lindy Hop! We used to belong to a competition swing dance group. Now, I cannot dance and it makes me very sad. My husband won't dance because I can't. I used to be a size 6, and now I am multiples of it because I cannot tolerate any exercise at all. I wish and hope for the day that I am able to go dancing with that handsome man of mine.

It is very hard to hear dance music and not be able to move to it. It is almost like torture. I understand exactly how you feel Tessa.

Angela

[Tessa]

Hi Angelika_23

You can understand me best as you have been such a hard dancer... I am so sorry for you not to be able to dance anymore.

It is sad and a torture because as you very likely feel too, when we listen to the music, our body wants to move with it... But we cannot...

I am glad that you can still dance Persephone. Enjoy it for all of us!

Yes, ictus, Life is hard...

Thanks for posting.

Tessa

[ladyt]

hi..

i loovveed to dance, dont know if i was any good at it, but i loved to dance.. Ust on parties and dance clubs etc.. took swing classes and ballroom, but i keept falling down.. And not many wanted to dance whit me, fainting seems to scare people a bitt..=)

keept dancing intil i ust couldnt anymore.. I miss it a lot, but i dance in my mind, my dreams and my soul... And hope to dance again staning up and moving around...