just need to vent

[shannon]

Hi all,

I feel sort of silly complaining about this. But I guess this is the place to do it, because you are the people who actually understand! Well, I live in the dorms on my campus, and on my bad days I have to use the bath tub instead of the shower. Somehow this came up in a conversation with two of my best friends yesterday, and they were both totally grossed out. They thought it was disgusting that I would use a public bath tub. I feel grossed about it too, but sometimes it's my only choice. They just don't understand that I actually get THAT sick. I don't know how to explain this illness to people. It's just so frustrating. I mean, if I was like missing a limb or something...they wouldn't make fun of me. Just because they can't SEE my illness, they think that it doesn't exist. That's how they make me feel at least. I feel stupid because I got all worked up and defensive in front of them. I just get so emotional when I feel like people don't believe that I'm sick. I just wish people would understand. I mean, these are my best friends.

[MomtoGiuliana]

Shannon--it IS hard when your friends don't understand. You at least expect to get some understanding there. One problem is that people you age are not experienced generally with disability. I know there are others on this forum who live in dorms and maybe they can give you some thoughts on coping in that setting. Have you tried a seat for the shower? Is that something you would have the strength to use on your bad days--since you also say you feel uncomfortable using the tub. I am surprised tubs are available in a dorm--does anyone else use them anyway?

I also find that I feel a lot better in the afternoon or evening, on my bad days. Could you shower at night instead of morning?

Take care,

Katherine

[corina]

Hi Shannon,

I share Katherine's suggestion as I use a shower chair myself. Maybe you could buy a little stool to use for showering.

I can imagine that you must feel bad about your friends' reaction, but maybe it's just because they don't know how sick you can be because of POTS. Maybe you could give them a brochure that explains about POTS (you can order them via this site). Unfortunately it is our task to let people know that POTS exists and explain how disabling POTS can be.

Good luck,

Corina

oh, and don't feel silly about "complaining": we all need to vent from time to time. That's what we're here for: to help eachother out!!!

[Ernie]

HI,

Why are people grossed out about taking a bath? I don't see anything wrong with that.

[AJVDK]

Shannon,

I am sorry to here about how your friend mad you feel. One thing I did was when I was still working some of my empolyees didn't understand how I could feel good one day and not the next, or that I would have to work form home sometime, also alot of my family didn't understand. One thing that help was I got some of the brochures form dinet about pots and gave them to some of my family, then the seem to get it alittlr more, or at leaset got that it was a "real" health condtion. Also I have give out the cards before that I got with the braclet for dinet. It help me, it fact I left the company that I worked for a month ago, and one of my co-workers is still looking on the net, about information. I not sure what it would be like living in a dorm ( I got married my 1st year in college) if it would help or not, but I thought it would be an idea to help let them know what is going on with you. I hope things get better for you!

Amy

[shannon]

Thanks, everyone!!! Maybe I'll look into getting a shower chair .

[PattiL]

Hi Shannon,

My daughter is 20 yrs. old also, has POTS, and is in a dorm too. She doesn't have a tub in her dorm's bathroom. it does have a shower chair in there, but she even said it's so gross she can't sit on it. I told her to bring a rubber mat (the kind you'd use on the bottom of your bathtub and put it on the chair. At least then she wouldn't be sitting directly on the chair. Ask the disability office if you can have a chair put in the bathroom and left in there. They should provide one for you.

I don't think some of Chrissy's friends understand how sick she can get either. She's actually had more trouble with some professors than kids though. I'm sorry your friends made you feel defensive. Chrissy feels the same way. Since you all look great I guess it's difficult for people to understand that you don't always feel great.

Are you going to school full-time? What is your major and what year are you in?

Good luck,

Patti

[shannon]

Thanks Patti,

I probably will talk to the disabilities office about getting a chair. I had never even thought of that! I am lucky enough to be able to go to school full time --- 15 credits! I'm in my 2nd year as a social work major. I hope school is going well for Chrissy too.

[gdomaracki]

I can relate. My own mother doesn't understand what is going on with me, and even questions the doctors about this "illness". (as she calls it) She doesn't understand how one minute I can be fine, and then the next my heart is racing and I can't breathe. I also feel like people don't believe whats happening to me, but then I get on here~>to regain my sanity and assure myself that it is. I don't live in a dorm, but I do know what its like to have to take baths. I take at least three/four a week bc I feel that bad. Keep your chin up and if you need someone to talk to, just pm me!

[Wufflebear]

Hi,

When I was in college I got my showers at night, just before bed...we did not have a tub available. But just after college I lived in an old house that had been converted to studio apartments. Three to a floor and we all shared the bathroom. It was a tub shower. So I bought two rubber mats and would put them down in it. Then just ran the water over me...I did not fill up the tub. If there is no shower attachement you can get shower hose things from walmart and other places that fit over the tub spigit. That way you can sit on your nice clean mat and still get the shower affect.

As far as friends not understanding..that is hard. Give them a brocure if you have some or just tell them you have a chronic illnes...likely they will understand that part enough.

[dianaD]

I am so impressed that you are able to go to school and even GET a bath!! I know it is harder for younger people to understand disabilities, but what an incredible social worker you will make!! You understand difficulties and will be so much more empathetic than your peers!

Know that WE understand and that you are not alone.

[dizzygirl]

Shannon I am so sorry that your friend made you feel bad.. and that they were so inconsdierate..

I wanted to mention.. Do you have insurance?? depending on the type of insurance that you have.. if you can get your doc to write an order out for and fax it to a rehab store.. insurance should pick up the full cost of a shower chair.. I know i just got a new one.. and insurnace totally pd. for it all..

ahower chairs make the whole showering thing alittleasier.. as do the detachable shower heads with hose..

take care!

and great job on the being able to go to college full time! that si wonderful!!

[Jacquie802]

Hi Shannon,

I don't know why your friends think it is gross that you use the bath at school. I doubt anyone else even uses it and if they do they spray it down with a tub cleaner....I think it's great you can even take a bath, they make me more symptomatic (most likely from sitting in the hot water) and it's soo hard for me to get out of them these days!

Oh, I use a shower chair and it helps out ALOT...

Jacquie

[persephone]

Dude, what's up with the bath? I only have a shower now- with a chair, in my dorm and I really MISS the bath!

I *LOVE* A nice hot bath- I went home from university yesterday so I could have one!

If they don't like the bath, they're missing out. So other people use it- so what? give it a quick rinse with a cloth and it's spick and span.

My bath is my HAVEN. don't believe me? try some LUSH bathbombs- go here and see-

http://www.lush.com

Try one of them and you will NEVER look back. Nor will you ever want to use the shower again!

what silly people your friends are! If I'd been there, I'd have made some wisecrack like "well, at least I wash! what about you guys? bit whiffy today ren't you?!" but then I am REALLY cheeky like that.

I know what you mean though- it is really hard when friends don't take you seriously. Show them the website, let them read about POTS- maybe it will help?

Good luck, keep us posted and enjoy the bath- you lucky person! I'd give anything to have a bath here in Oxford.

[shannon]

You guys are awesome. I feel so much better reading all of your replies. Sorry I haven't been online in awhile. But thanks SO much for your support!!!!

Take care

[Evie]

Sorry that your friends dont understand, it can be really tough. I got CFS/POTS at 16 and unforunatley young people tend not to get it. Have your friends seen you faint? I found once friends saw me when i was bad they understood more. I mean it would be strange for them as personally they only saw me when i felt ok (or was putting on a brave face). Once they see how vulnerable we can be they tend to understand a lot more. It really hurts when people dont understand.... REALLY hurts (i had a big cry about it yesterday heh)

Good luck with it!

More people would use the showers wouldnt they? as long as the bath is cleaned (and hey hopefully not many people use it) then i dont see why it is so gross!

[Guest dionna]

Hi all,

I feel sort of silly complaining about this. But I guess this is the place to do it, because you are the people who actually understand! Well, I live in the dorms on my campus, and on my bad days I have to use the bath tub instead of the shower. Somehow this came up in a conversation with two of my best friends yesterday, and they were both totally grossed out. They thought it was disgusting that I would use a public bath tub. I feel grossed about it too, but sometimes it's my only choice. They just don't understand that I actually get THAT sick. I don't know how to explain this illness to people. It's just so frustrating. I mean, if I was like missing a limb or something...they wouldn't make fun of me. Just because they can't SEE my illness, they think that it doesn't exist. That's how they make me feel at least. I feel stupid because I got all worked up and defensive in front of them. I just get so emotional when I feel like people don't believe that I'm sick. I just wish people would understand. I mean, these are my best friends.

I also use a shower chair in my marine corps barracks room. Plus, I have the extra mats in my shower so as to not slip around as easily if I do pass out in the shower. I have done that a few times. Believe me it is better to take the teassing than to take the beating you know what i mean- plus being around that water you have to be extra careful. I do understand what you mean about them not believing you and having a hard time understanding. I had to convince the marine corps that I wasn't faking anything. So for about the first 6 months of experiencing all the crazy symptoms and passing out daily... I was still working and training just as any one else in the marine corps. 2 years later and I have passed out more than 300 times and finally I am believed by everyone which makes it great for me. Everyone is different and it may take some longer to understand. Just try to be patient with others. You really can't blame them for not being able to understand. Before you got your condition do you really think that you would be able to believe that there was someone out there that had all those problems? I met a marine that got his condition while in Iraq and we couldn't believe each other about the passing out until we actually saw each other with the problem. He had no idea that there could be someone else like that. Neither did I when it first began. Just keep thinking positive and when they can't understand you... just try to understand them.