Embarrassed....

[erikainorlando]

i just needed to post....

My son's 11th birthday is on the 8th. He wanted an ITouch. I had my daughter (15) take him into the Apple store at the mall. They got it all figured out and then I would walk in...go straight to the store and pay and leave. I walk but not a long ways and it always depends on ..well you know...it just depends how far I can go...

I was walking into the mall, getting nervous at how far it was just to get in. Walked thru the food court...lots of people...neon signs...too much for me.... I couldn't find the Apple Store..it seemed too far. Kids darting in and out.. I was not feeling well at all. Then I hear "Erika"...it is my boyfriends daughter (she is just an adult). She knows I have been sick but probably not all the specifics. She is with her husband and kids. She says "boy..you look frazled"....I say "Io have to get out of here!" ..She keeps talking...I am thinking that I am going to fall over...I am sweating at this point. I need a bench..I try to cut it short..and know she can't figure what is going on with me...I hate this!! I hate having to say that I have to sit...can't walk far....I am embarrassed!!!

Furthermore..she starts with (she is very nice..) her daughters Quincinera is on July 25th...am I coming with my kids...(her kids and my kids are about the same age....my boyfriend is 12 years older than I). I would normally love to go...I am way nervous about this tho... I can't dance. I don't even know if I can walk all the way into the hotel lobby to the ballroom....I also don't like a lot of noise. AND I never know how i will feel!! I normally love this stuff ...dancing and socializing. but I am not myself these days. AND I am embarrassed that I can't.. It takes all I have and then some to get to the Apple store...

I don't know if anyone else can relate...I feel like a failure at times like this

Thanks for listening...

Erika

[futurehope]

Ah, yes. the old "standing there and having a conversation".....most normal people can do this with no problem.

I can relate. I've been in your shoes. I sometimes say, would you mind if we sit? I can't stand for too long. Or, if I hardly know the person, I keep the chit-chat from going on too long.

You survived another encounter with the "normal" world. Congratulations! Oh, the machinations we go through to get through a day! Only another POTsy can relate. How far is the store? Where are there open parking spaces? How far do I have to walk? How am I feeling? Have I been vertical too long? My brain has stopped. I can't think. I can't wait to sit (or lie) down. Hope I remember what I'm doing, etc. etc.

[firewatcher]

I avoid malls like I avoid strobe lights! It is just sensory overload! As to conversations, I don't even ask to sit, I just do...on the ground if nothing else is there. Most of my shopping is online and I time my grocery runs around the Non-peak times. If you feel up to the party then go, but don't push or try to dance. Usually there is a nice open space outside the hotel ballrooms with benches, you could sit there with a drink and watch from outside while your kids take part. You are not alone. I can sooooooo relate!

Jennifer

[april abbott]

I can relate, as do many others on this board. I do get embarassed when I have an episode in public.

When my daughter was in T-ball a few years ago, I would have to take her to the park in the middle of summer and watch her practice and play. I remember specifically once that I literally sat there for about an hour, close to losing consciousness and all I could think was that I was stuck there with my small child, and if I passed out, then my daughter would be left in the hands of strangers. Finally I sprawled out on the bleachers, flat on my back, and managed to call my husband, who had to leave work to come get me. It was such a hassle. My husband had to get his Grandmother to come pick me up and take me home so he could stay with our daughter at practice. He had to hold me up as we walked to the car, and it almost came to the point that he had to fully carry me.

I got back to his grandmother's house and laid on her couch for hours, too sick to speak or go to the bathroom. I'll never forgot that day as long as I live.

Five years ago I would have *never* imagined going to school full time, much less getting a job! Those kinds of episodes were once a common occurence for me, and I missed nearly a decade of my life, and many wonderful times with my little girl. One year, I missed my baby girl's entire Christmas. I still have trouble talking about it. She was only 2 or 3, and Christmas was such a big deal for her. My husband packed her up and took her to my Sister's house, where they all celebrated, ate dinner and opened gifts without me. All I have are a few photos of that moment, and it took me a long time to forgive myself.

We must all come to terms with our limitations, push ourselves as far as we reasonably can, and never let anyone else try to pressure us into something we know is impossible. You might miss some stuff now, but keep up your spirits and try to visualize all the things you will one day be able to accomplish.

You won't get everyone's support, unfortunately, but you do have ours. You know what you are capable of, and don't be so hard on yourself. You are ill and it is not your fault. If it was migraines, diabetes, or another well known disease that had a greater amount of public awareness you probably wouldn't have such a hard time with other people understanding. But you know your illness is real and that you are doing the best you can. Best of luck to you, and things can get so much better.

[erikainorlando]

You all are so kind. I am so glad to have a safe supportive place to take this stuff. I get so frustrated and feel so alone at times with this..it is so nice to know I am not.

Erika

[Brye]

I hate getting caught in a standing conversation. I too start looking around for the nearest bench and then start breaking a sweat praying I don't pass out mid conversation. And then I'm forget to pay attention to what they're saying anyway because I'm busy looking for a place to sit down. I like the "lets sit down and chat" line. I plan on using that one in the future. I can tell when I'm having a more light headed week because the palms of my hands start to feel bruised from leaning on furniture, railings, etc. Anyway ... I'm feeling your pain!!

Brye

[janiedelite]

Hi Erika,

So sorry. That situation sounds SO stressful! It's so hard when we look very normal on the outside and someone else is animatedly conversing, you don't want to feel like the party pooper all the time. I don't any advice for the party, except to let you know I have said no to many events. Just last weekend, my girlfriends were going to a movie and having a BBQ afterward. I told them I could go to the BBQ (because I could lie down at her home if needed), but not the movie because of having to be upright for a couple hours. Add the bright lights and noise...

My sister-in-law wants to have a day at the beach in August with my hubby and I and some other family members our age . I said I could go IF: temps are under 80 (I can still wear my cooling vest), there is shade, and I can leave whenever I need.

Do you have a seat cane? I bring mine with me everywhere. I get lots of comments about it because other people say they wish they had one . It gives me something to hold on to when I get out of the car for support. And I can venture a bit farther with it knowing I can sit whenever I need to. I got mine at a local medical mobility store for $25. I called several stores but found one owner who had quite a selection!

[Brye]

I had never heard of a seat cane until now. What a great idea ... here I've had a folding chair tucked under my stroller at all times. Those look so compact and easy to keep on hand.

Thank-you thankful for that suggestion!!!!

Brye

[tinkerbella]

i had to take a bigger step this week, i kept having to sweat till i would have to just have to sit on the floor where ever i would be. my doc wrote me an order for a fancy smancy walker with a seat. i usually walk with a crutch, maybe now i can start to go out a bit as i'm basically house bound. they make walkers look really cool these days. i felt like i was buying my first bike. one has to do what they have to do to get by. i did have to pay and will be be reimbursed for most of it.

good luck, and take advantage of of what supplies are available out there for you. my insurance wouldn't pay for a cane with a seat, but would pay for the walker with the seat. also, wouldn't let me get my wheelchair all medically needed as one must progress to these items. i tried to explain my illness, but the woman said it was the insurance company. crazy.

i look forward to trying to build up some muscles with my new equipment.

blessings and love~

bellamia~

[EarthMother]

I get frustrated that I can't do "normal people" things, saddened for moments when I focus on things I can't do (like parties or vacations) for my kids or my husband. But embarrassed? Not since I met so many wonderful, powerful, optimistic "normal POTS people" here on the forum!

As for shopping trips and "standing conversations" I can't stress enough how happy I am with my wheelchair! If I had known years ago how much easier this can make my life, I would have avoided so much pain as well as so much avoidance! Manual chairs are cheap, I'd encourage anyone not to let insurance stand in the way -- though my insurance covered the cost of mine.

I only use my chair when I go out (which isn't often, but it wasn't at all before my wheels). I have a two story house, so there's no chance of deconditioning for me! I stand and walk as much as possible each day. But when I want to go out!, I don't want to have to plan and measure each step inbetween benches and rest points. My arms are strong and over the last 6 months I've built up good strength and endurance to push myself. I love the speed! I no longer worry how far something is, I can zip down an aisle with grace and style! Did I mention my chair is purple?

I can stand and walk -- for me a wheelchair gives me distance and ease that I have NEVER had with POTS. It feels like the freedom we had as kids when we learned to ride a bike! In an instant our world opened up and we could soar like we never could on two feet. My chair gives me that feeling.

I know its strange for some people ... because I don't look like I need a wheelchair. If you can stand and have stong legs ... why do you need a chair? But we've been explaining this illness for years anyway ... and THIS way I can actually have a conversation with you from the orthostatic comfort of my wheels.

[tinkerbella]

em you are so right.

my walker is purplieblue.

i hope the wheel chair will be like that also.

my insurance makes you rent it for a year and then it is yours.

what make is your's and model # as sometime when I get a ride back

I need to order one along with a back brace.

anyone else have some pretty ones out there?

I also am disappointed about not being able to travel and go away for the

long holiday weekends. It's these holidays that I miss my ex and feel very sad.

I have setbacks emotionally. Feel lonely and cry a lot.

Having no wheel these days is hard to deal with. each holiday brings up

a whole bunch of emotional mud for me. Each day I think I've figured out

who I am with this POTS dx and then another set back comes along as they find something

else wrong with me.

All I really know these days as I crumble like a cookie and go and get watered

now two days a week in the hospital. l think that God must be putting all of us through

this difficult experience to be nicer people. I have to say I've never met such wonder

and nice people as I have met here. Thanks everyone and may we all make the best of

this holiday weekend. Let's make our own fireworks!

Blessings and love,

bellamia~

[bjt22]

This has pretty much been my life for the last decade. I would say 15 years, but I had a couple years in which I was significantly more functional in the interim.

Everything depends upon how I'm doing on any given day. I remember a time back about 10 years ago, when I had first relapsed back into more severe symptoms in which I accompanied by then teenaged oldest kids to the mall for clothing purchases. Can I just say how frightening it was to have to turn my credit card over to my then 15 year old daughter to pay for the purchases?

I don't drive, so I obviously am not going out by myself. I've adjusted to this, and it's not that difficult because I do have kids that drive as well as my husband. They're used to the way I am now, so they don't think it's odd if I get into a store and two minutes later have to leave. Needless to say, I don't "plan" on anything large scale. We really do get better at living day to day, and yes, even minute to minute. Right now, I can't tell you what I'll feel like being able to do tonight. If I know I have to do something, well, I don't do anything beforehand, really. It's easier now that my kids are older. My youngest will start high school this fall, and just waking up with her and her older brother before they go to school means that I really do nothing else for the entire morning. I go back to bed.

And the conversations? I guess I've gotten really good at avoiding people. Sounds awful, doesn't it? There's times I look out my window before I go outside lest a neighbor be out who might want to stand there and chat for a minute. Otherwise, I'm very good at steering, directionally, myself and a couple of others towards a place where I might sit. Funny as it seems, after awhile one can get so good at doing this that no one notices! My husband often laughs at what he calls my "holding court", because when we're at some sort of function, I'll find a place to sit and let others come to me. You know, the people that you really are interested in talking to will do that....and these days, if they aren't willing to come to me, then, well, I guess I can do without talking to them!

[futurehope]

This conversation reminded me that on the rare occasions that I get to go to a botanical garden or "Sea World" or something of that nature, I rent their scooters for a day. It's usually $15. Whatever it costs, it allows me to be somewhat comfortable and less stressed about standing. I am usually holding an umbrella to shield me from the sun, as a well as carrying a squirt bottle with water to keep me cool. Very worth it.

[Tammy]

Oh I am so relieved to read a post on someone who understand exactly what I go through when I try to do any little sort of thing, like a small shopping errand. This same thing just happend to me yesterday and someone knew me and stopped to talk. She's telling me how 'good' I'm looking, as I'm feeling like I'm about to fall over right there! She's asking me how I'm doing and about my daughter, etc. The entire time I'm thinking how weak I'm feeling and that I need to sit down but there's no where to do so. FINALLY, she says she has to get going and I BOLT out to my car and just rest for a long time before I drive home (only 3 miles away as I'm not able to drive far either). So I tell myself that it will be a long time before I try that again. Well than today I see a garage sale in our neighborhood. So okay, I can drive there, it's close. Well there are so many cute things for my little girl, and everything is 50 cents. So of course, I load up my arms (ya, I know - bad idea!!!!) and within a minute I feel weak, dizzy, sweaty, and I'm ready to drop everything and run, but knowing that my daughter needs clothes, I carefully and very slowly make my way over to pay for the stuff. Thankfully I was about 2 blocks from home, but I know that just getting excited about the great deal I had found and also the weight of the clothing was what flared me. It's just so embarrasing and frustrating at the same time. Thanks for sharing your story and hope my story helps you feel some company in this miserable illness we have

[Rene S.]

i just needed to post....

My son's 11th birthday is on the 8th. He wanted an ITouch. I had my daughter (15) take him into the Apple store at the mall. They got it all figured out and then I would walk in...go straight to the store and pay and leave. I walk but not a long ways and it always depends on ..well you know...it just depends how far I can go...

I was walking into the mall, getting nervous at how far it was just to get in. Walked thru the food court...lots of people...neon signs...too much for me.... I couldn't find the Apple Store..it seemed too far. Kids darting in and out.. I was not feeling well at all. Then I hear "Erika"...it is my boyfriends daughter (she is just an adult). She knows I have been sick but probably not all the specifics. She is with her husband and kids. She says "boy..you look frazled"....I say "Io have to get out of here!" ..She keeps talking...I am thinking that I am going to fall over...I am sweating at this point. I need a bench..I try to cut it short..and know she can't figure what is going on with me...I hate this!! I hate having to say that I have to sit...can't walk far....I am embarrassed!!!

Furthermore..she starts with (she is very nice..) her daughters Quincinera is on July 25th...am I coming with my kids...(her kids and my kids are about the same age....my boyfriend is 12 years older than I). I would normally love to go...I am way nervous about this tho... I can't dance. I don't even know if I can walk all the way into the hotel lobby to the ballroom....I also don't like a lot of noise. AND I never know how i will feel!! I normally love this stuff ...dancing and socializing. but I am not myself these days. AND I am embarrassed that I can't.. It takes all I have and then some to get to the Apple store...

I don't know if anyone else can relate...I feel like a failure at times like this

Thanks for listening...

Erika

Erika,

You are NOT a failure. Your body is failing but YOU are not. I could have written that post myself. I know 100% how you feel. Too much stimuli. The lights in malls are horrid and they play horrible tricks on your eyes. And I know that awful panicky feeling. You just wanted to get in and get out! And then you became disoriented and that's so horrible. I'm so sorry that happened.

Just this morning I thought, well I don't feel so bad, let me get a few errands done. Went to the health food store, picked up stamps at the post office and thought since I'm in the car (doesn't happen much!) let me get over to Walgreen's. Of course I grab what I need as quickly as possible and then there's one cashier, with a problem with a transaction. I too start thinking, I need to sit, how much longer is this going to take?

8 months ago, I wouldn't have given it a thought.

Please don't blame yourself. You have no control of this.

We're all here to lend you support and understanding.

Rene

[erikainorlando]

Thank you...I had such a bad day today thatI just read most of these posts (...probably from all the stimuli last night).

Your kind words really soften the blow of how much diffent my life is these days...

Erika

[ramakentesh]

Yeah I think most of us will be able to relate to your post.

Firstly I always go shopping by myself. That way I can time my entry and exit depending on how Im going on the day. Some days Im ok, others if Im dodgy, I always just go in and out like a military mission type deal.

Neon lights, busy environments and all that set most of us (but not all of us) off I think.

Imn like Firewatcher - I dont try to hard it out, I just sit if I need to or make an excuse to go somewhere quieter.

I had a major work function on last night and Ive been feeling terrible so i was worried about it. In the end I went NUTS with the volume loading. Im talking litres, not glasses, and I felt 100% normal for about an hour in a crowded environment for the first time in a long time. it was nice...

I went to a restaurant recently and I felt like i was going to pass out from the moment I got there- I was going to leave after ordering out of necesity when my wife asked me to swap seats. As soon as I did and I could lean my head on the back wall and I wasnt staring into a light I was fine. Work that out...

In the past, ive used alcohol for this - it tends to limit the overstimulation feeling but probably not the other stuff...

[Guest tearose]

I too have times when I am out and about and I usually carry my seat cane. Carrying that can embarrass too! People will just walk up to me and want to ask question...what is that, why do you use it, oh, do you have back trouble, where can I get one.. Sometimes they are upset because I look young and am in line and sit down while they must stand. Some strangers get pushy and abruptly speak in a condensing way. They say"oh, what a cute chair" with an attitude that says, so what's your problem? I have learned to say, "Thank you, it is a good chair, but you would not want the condition that comes with it". I've even had to say to someone who was nasty. "Do you really think you would want to walk around carrying a chair all the time? It is not an easy thing, you loose the opportunity to use both hands." Do you REALLY think it is fun shlepping a seat everywhere? And not that it is their business, but I have lymphedema in my other arm so I get flustered with how much information a "stranger" is entitled to!!!

It is the unfortunate moment when suddenly there is waiting in line I did not anticipate and and then I pray I don't need to sit down quickly. I have had to resort to sitting on the floor or squatting down.

The problem with running into someone who wants to stand and speak is also that I probably won't even hear everything they are saying and I won't recall most of the news or information they are trying to share because my mind will be so fuzzy I just can't retain the incoming information!!! That is horribly embarrassing because they THINK I heard and understood and retained what they said.