POTS almost gave me detention!

[Lisa]

Hi everyone

OK so I just want to tell this story to people who understand. I am a senior in high school and I have to take gym class. The school nurse and the gym teacher both know that I have POTS even though they don't fully understand it. They just know that sometimes I need to rest.

So sometimes after gym class my whole body just feels really tired and weak from all the excessive activity. Because of the POTS, I get that feeling where your whole body just doesn't feel like moving. Since my body felt so weak after gym I would take my time to get to the next class-which was lunch. I didn't think it was a big deal that I kept on being late for lunch, especially because I had a good reason.

Well one day in lunch a teacher comes up to me and says I have detention becuase I was late to lunch 3 times. Now, I have never ever had detention in my life or been late to any classes. I calmly tried to explain to him that I had a heart problem. I told him I had a doctors note if he wanted to look at it but he refused. I explained to him that I did not really care if he gave me detention, but that he should understand that I would probably continue to me late in the future. Then he told me I had to go talk to the nurse and bring him a note from them the next day.

So I went to the nurse and they were like "Well why were you late to lunch?" and I was like "Because my whole body was very tired from gym and when it gets like that I can't move very fast." and they were like "Well why can't you get there on time?" and i'm like "because my whole body hurts and I can't move fast!" and they kept on asking me the same question but it's just so hard to make someone understand.

The next day the same teacher comes up to me in lunch and tells me "he'll let it go this time." and that if I got very tired after gym to get a pass from my gym teacher but that "I wouldn't take advantage of this situation" Umm..Hello? Why would I want to be late for lunch?! It's only lunch! It's not like I'm late to any real classes!

So I just had to tell someone this story who understands how I feel. Thanks for letting me vent!

Lisa

[briarrose]

Sorry for the bad time Lisa.

That kind of story just makes me angry. I don't care if your a teenager or an adult. People need to understand this. I have half a mind for you to tell me what your school district is so I can right the administrater. In fact, I would be more than happy to write and supply information to your school district if you would like to give me the information.

When is this madness going to stop?

We need to be proactive in educating people!

Steph

[denabob]

There is alot of useful info out there on the subject. One of the best is the doctors mind experiment I found that someone listed in another post (cant remember who or where now )go to http://home.att.net/~potsweb/mindexperiment.html (I think that's it I have brain fog BIG today ) Take it to your school and let the teachers read it maybe they will be a little more understanding!

What angers me about that is if you had asthma or diabetes they wouldn't expect you to "push your body through" to make it on time POTS is treated as if it is only in our heads and it isnt!!! I tell people if I could fake heartrate and BP then I could be rich teaching people to pass lie detectors!

I applaud you for doing the gym class in the first place.........I cant imagine how hard it must be to be a teen with POTS! I was diagnosed at 29

What did your parents do about this mess? As a mom I can say I wouldn't be pleased! I see your point about it only being lunch... how rediculous!! I'm surprised you make it through the rest of the day, if all you are is a few minutes late to eat they should be thrilled! If you were trying to take "advantage of the situation " you'd insist on going home.

Yay to you for being strong!!

Good Luck and dont let others' ignorance set you back!!

Deanna

[briarrose]

I think that the Mind experiment is great, but it is entitled for doctor's. I think Chris was trying to make a point to a group of people that could fundamentally make the relation. If Lisa is trying to make an impression on people that could really care less, than that document isn't going to help much.

People first have to get it. Diabetics went through this whole process too. People didn't believe them and their illness. Diabetics didn't get a free ride and they struggled for decades trying to convince the public of their own ailments. (I was trying to find an article that I read about the obstacles diabetics went through just 50 years ago.) And look at all of the chronic fatigue suffers and their non-believers.

I'm sorry, I will always feel strongly about this, we need to make a stand for ourselves and our children!

Most doctor's (health care professionals) don't understand, what makes you think a teacher (that thinks some teen is trying to pull the wool over his eyes and pull a fast one) is going to get it? If in doubt, just read past posts that others have written about their own experiences.

Steph

[denabob]

Good point Steph! But I wont give up on educating people (or at least trying to )on how to deal with us- most definitely our children. I guess I didnt realize or even consider the struggle that other chronic illnesses had to face also Thanks for the reality slap

Back to Lisa: Have you been to the dynakids web site yet it is geared to kids with dysautonomias? They've probably experienced alot of the same things you are!

I wish you luck because this is a subject that I too am sensitive about! Another good reason for us to publish our stories and try to reach people with the reality of this illness!

Deanna

[Sue]

Hi Lisa

I don't know if this would work for you but in my daughters school you can exchange lunch for a study hour. Meaning you just spend your lunch in the library. That would enable you to take your time from gym/and not have to worry about stressing yourself out trying to rush to the lunch room.

Good Luck

Sue

[briarrose]

Deanna

I'm Sorry if it sounded like I was attacking you. I just get so angry when I hear stories like this, it makes my blood boil.

Maybe we should contact some of the other organizations such as the CFS foundation and see if they will work on a joint project with us about public awareness.

I just remembered something else I've seen posted before that might help, for simple minded people (sorry I'm still mad) like a school teacher trying to bust a teen.

http://www.mychronicillness.com/invisiblei...tlooksogood.htm

Steph

[Merrill]

Lisa, you sound like such a cool kid - (not really a kid anymore actually). Your story slays me. It's incredible how stubbornly ignorant people can be. They just don't know what it feels like to be in your skin--all you can do is keep reminding them that your body has special needs that can be dealt with if given a chance--and what you need is some extra time to rest after gym--and perhaps the option to not exert yourself so hard during class.

You sound like a very good, responsible student. Your teachers need to start recognizing that and giving you a BREAK! Sheesh.

And may I just say how completely remarkable it is that you're able to make it through gym class at all? I got out of gym the first opportunity I could--I thought I'd have a heart attack every class! But I had to do something, so they let me take a dance class that was offered instead. I knew we'd spend part of the class doing stretching while sitting on the floor and part of class holding onto a barre so I wouldn't fall over! That may not be an option for you...

Take 'er easy, Lisa. Stay true to yourself and what you know is right.

Merrill

[EarthMother]

What happened to the good ol' days when seniors were allowed to go OFF CAMPUS for lunch? It's a shame our whole educational system has had to be walled in, locked up, dog sniffed with armed guards at every gate.

Fortunatley it's just a matter of a few more weeks and you will be DONE with gym class for the rest of your life. Congratulate yourself on making it this far and my congratulations to YOU for being such a wonderful educator for all those that you come into contact with.

My sense is you'll find a way to make this work for the rest of the term .... but if it ever gets too hard to handle use the word "harrassement" and see if they don't change their tune.

Good luck and enjoy the rest of senior year ... it can be a remarkable time.

EM

[kjohnell]

Hey Lisa,

My name is Kat and I have just been recently diagnosed with POTS. I am only 20 and had to abruptly drop out of my college classes to treat this horribly debilitating disease. I noticed that you are a senior in highschool and around my age and was wondering if you could give some advice on how you live day to day (and especially go to class)? I had an attack in class and immediately started hyperventilating and causing a scene, so I decided that the only resolution would be for me to drop out of my classes. I had extreme plans for my future and this syndrome is totally putting a dent in my life. My first attack was about 1 1/2 months ago, very spontaneous. I was wondering if you or anyone else on this forum could possibly give some assurance on how long this will last or if it ever goes away. I was thinking since it came on so suddenly that it will alleviate itself in some spontaneous manner as well. Any answers? Also, Ive read that alot of younger men and women (especially women) suddenly undergo symptoms related to POTS and ultimately are diagnosed with POTS. Is the increasing number of younger diagnosed persons with POTS related at all to drug use? Because, I will admit, that before my symptoms I was smoking weed several times a day. When smoking weed started causing arrythmia along with many other panic-like symptoms it became more discomforting rather than pleasurable... so I quit. Would weed or any other drugs trigger this syndrome? I realize this is alot to ask of a senior in highschool so I want to make it clear that I am addressing this to anyone who posts on this forum and anyone who suffers from POTS as well.

Please Respond and Thanks for Listening,

Kat

[Jersey Girl]

I "used" to be school nurse so I know that you're entitled to accomodation without discrimination in your schedule by federal law. The nurse should have a copy of your plan in her office and if you are 18 you can ask to see it. If not yet 18, surely your parents can ask to see it. You certainly don't need any more aggravation from the lunch duty squad. You are to be commended for making it a full day in school during a usually challenging year. Keep up the good work!

[Michelle Sawicki]

Hi Lisa,

I know the DYNA group has information specifically geared toward schools. Debbie will help you out if you contact her. Their website is www.dynakids.org

KAT, some drugs can cause symptoms of dysautonomia...but I'm not sure if marijuana can.

The DYNA site might have info that can help you as well.

Best wishes,

Michelle

[Lisa]

Hi again,

I just wanted to thank you all for your responses. You guys are the best. It's great to know that no matter what happens during the day, I can come here and be understood, and that means a lot.

I just wanted to mention something. I had recently been exercising on my treadmill, but I stopped because it was just making me extremely tired. But then today in gym we went to the fitness room and I remebered something my doctor, who also had POTS, told me. It's actually pretty simple, and I can't believe I never thought about it before. She mentioned that the reason why I was having so much trouble excercising was because I was standing on a treadmill for 20 minutes and that an exercise bike might be better because i'm sitting down. Well today in gym I tried the bike, and let me tell you it was a world of difference. It just seemed so much easier and-I wasn't late to lunch! I guess that means I wasn't that tired!

Thanks again, guys. I'll talk to you soon.

Lisa

[denabob]

Ireally have to say that your parents must be proud of you ! you seem like a very responsible young lady! Your determination will help you in all aspects of your life! You Go Girl!!!

Steph: No prob! I know you werent attacking me we are on the same side...I get just as angry! Our lives are difficult enough without ignorance adding to it!

Deanna

[Marg]

Lisa -

My daughter will be 18 in May and has been dealing with POTS/CFS for 7 years. You sound alot like her as far as figuring things out that work for you. What a great idea to ride the stationary bike instead of walk on the treadmill! I'll bet you've come up with all kinds of ways to be able to still do the things you like to do. Keep thinking, you'll accomplish much. Good luck!

Kat -

If you still want to go to college, check into on-line classes.

Margaret

[ramakentesh]

Marijuana causes impaired neurological function - orthostatic hypotension and abnormal heart rhythms. Recent studies also show that marijuana slows blood flow to the brain, a change that stayed in chronic users one month after they stopped smoking, which would or could result in similar feelings to pots.

Orthostatic hypotension certainly wouldnt assist blood flow to the brain either.