Just Want To Vent One More Time

[erikainorlando]

Sorry. But you all know what I go through and I am certainly short on folks who can comprehend my illness let alone relate.

I had to bring my son to the store to get a game for a party this afternoon....I feel fortunate that I can usually do an errand. But we are at the game store, the young man greets us and stands at the door. While he is standing there we are waiting in line (I just do gift cards)...I wait...standing..standing..finally I say to the other guy waiting on folks "can't the other guy help us rather than letting us all stand here?"...you all know how irritable I get when I have to stand...

now I do realize this is my problem and I need to understand that most folks don't get as ill as me when I stand..so I feel a little bad for being impatient.

Now on to CVS to get some water (i say to myself that I will not get impatient). I can't find the water...I ask (standing again)..they don't know where it is "look down aisle 25 bla bla bla" finally a young man does know but doesn't show me then I get someone to show me...and they walk away. The water is heavy (24 bottles). My 11 year old son knows I can't carry it so he tries. I am furious again when we get back to the cashier..i say something about customer service.

I am probably going to be kicked out of central Florida for being such a crab... I just can't stand well.. I know "get a wheelchair" but I don't want to and probably don't even need one most of the time..I just need to get in and out. I know that most folks can't understand that I don't have just a couple more minutes to stand in line as I may just keel over.

Life is just way harder for me (us)....and some things I just have to do...I am a single mom..then I get upset with myself for getting irritable. I am working on this but still fall way short at times. Anyone else? I know my frustratin is at my own limitations as much as it is at anyone else really.

Thanks alll.

Erika

[prettyinpink]

I have to tell you that even though you get crabby I'm sooooooo impressed that you chose to walk in stores and wait in lines. I think thats soooooo much better for you and can prevent deconditioning that makes your pots worse. I'm still using my wheelchair a lot because I walking in around and out of the store without passing out yet but i'm working towards it. I do walk behind my wheelchair in stores as much as I can. Your determination to stay out a wheelchair despite the fact that being a wheelchair might make life easier for you inspires me. You are physically suffering for the good of your health and if that makes you a little crabby toward sales people sometimes i say oh well.

[janiedelite]

Hi Erica,

I totally understand about getting short-tempered if I have to stand too long. I do use an electric cart if I'm doing my weekly grocery shopping a lot of the time, but other times I bring my seat cane. In addition to having the convenience of a seat whenever I want, it also notifies the store's staff that I have an illness and might need assistance. We look so normal otherwise.

Don't beat yourself up for getting crabby. I'm normally a very nice person, but my husband can tell immediately if I've been upright too long. It takes time to plan for our disability, but I've found that I can get more done and in a better mood if I plan ahead as much as possible.

You have a lot on your plate. You're doing a great job caring for 2 kids, driving to stores, you've got things especially rough having to do it all on your own. Keep venting, we're here for you!

[Maxine]

Erika,

I sooooo understand. I turn into more then a crab---------------- -----------not cool.

My husband tells me to get into one of those carts. He wanted me to use a wheel chair at the Zoo because I didn't make it very far before I felt like turning around. I made it! My face went numb, and my adrenaline was going crazy, but I suppose it was doing it's job. Sadly, I didn't have nearly as much fun as everyone else. MY son, his wife, and her father, along with my granddaughters walked ahead of us. I just wanted to see my new granddaughter's face when she saw the lights before Christmas.

We went to the Art Museum two days after that. It was rough, and I have a lot of abdominal pooling when I push too far, so when we went to eat out I wasn't able to eat much at all.

When I was talking with my EDS doctor on Monday, I just told him if I don't push like this, I will end up bed bound. I always push-----even on bad days (even if it's just sitting and folding some laundry). The only time I don't is when I have a virus---like right now................. I'm not good for much of anything like this. He agreed it's probably best to move about whenever I can.

What stuns me sometimes is that people can be so rude, and have no clue that I feel like I'm climbing Mount Everest just walking around like they do. It's not like this always, sometimes I just feel like I'm climbing hills with weights on my feet.

My husband knows that when I get scared (when my adrenaline is making my really jittery) that he souldn't take it personally. He knows that this is how I deal with the fear. I mostly keep to myself and do my thing to try to get things under control, but if there's too much stimulation around me when I'm like this, I can't take it. I'll start snapping like an alligator.

I've been very fortunate with shopping on most occasions. One time I made it to one end of the mall, and struggles really badly to make it to the other. When I got to the other end I was white as a sheet, and a couple that was leaving asked if I was OK. I sat by the door and smiled at them saying I have the opposite problem that people with high BP have. I told them my BP was too low, and made it difficult for me to handle gravity. They were the nicest couple, and that's what helps me get though those tough times--------------------nice people.

I'll tell you what can be paralyzing--------it's the depression one gets from dealing with rude ignorant docs, or rude ignorant people. this is what usually puts me to bed-----but only for a littlw while.....long enough for a good feel sorry for myself session.

Maxine :0)

[Brye]

You vent away!! This is the place for it!! I have this problem in public as well as at home. Dinner time is very stressful for me and that's when I snap at my kids. They're always under my feet because they're hungry. I get interupted a gazillion times to help them with reaching markers, going potty, changing a diaper, fixing toys ... you get the idea. I want to sit down more than anyone can understand. By the time dinner makes it on the table I've snapped at them 10 times and I'm too tired to sit down to eat with them. I'm also stressed hanging out in my kitchen to begin with because it's never as clean as I would like it.

I've seen these Martha Stewart type people say the kitchen should be the heart of the home and you should welcome you're children in and allow them to be a part of it. I don't know how many times I say during dinner prep "Everyone out" So much for welcoming them in! We all have our moments we would like to be more patient and in a perfect world we would be. We're all just doing the best we can and hopefully our loving, caring, patient, hard working moments will make up for our occasional moment of impatience. We're all human and are facing a challenging time in our lives right now.

I wish you a season full of short lines and helpful friendly customer service people!! WE all need to vent once in a while and now I've got my venting in for now as well!!

Brye

[potsgirl]

Okay, I'll join the vent-a-thon. My pet peeve is when I have to go to the mall and I know it might take a while, I will usually use my wheelchair. It seems like in my experience there are waaay too many times that people just stare at you, walk right in front of you, and are basically inconsiderate. I tried to go into a lingerie store to get some pj's for a birthday present, and I couldn't even make it around the crowded aisles. Isn't there a law?

Cheers anyway,

Jana

[babettess]

Hi Erica,

Vent, vent away.....as long and as often as you need. We understand completely.

I have found a very inexpensive help for the shopping problem and Thankful already mentioned it----a seat cane. It's a cane that has a seat on it that you can fold out and sit on while waiting in line. I got mine at a pharmacy and it cost $28.00. The best $28 I've ever spent. It's very light to carry and sooooo helpful. I went mall shopping for the first time in about 2 years the other day because I had it with me. When I get to the checkout lane or whenever I need it, I just unfold it and have a seat! I went in each store, did my shopping and then went to the van for a break and drove to the entrance for the next store. It felt wonderful to actually be doing my own shopping. When I have to be in one store for a long time, I do ride in one of the electric wheelchairs. I can't make it through Walmart without one.

I'm sending warm thoughts to you and your kids. I've been thinking of you but unable to post due to computer problems. As one cheer mom to another---I have made it to two of the football games that my "college cheerleader daughter" cheered at and none of the basketball games yet. We can only do the best we can do.....

As far as the crankies......Well, sometimes I tell my family, "I'm feeling like I could eat the heads off live snakes". That lets them know I'm about to get the crankies. And don't worry about getting kicked out of Florida- it's full of crabs.....sandcrabs, fiddler crabs, hermit crabs......you should fit right in!

Take care of yourself and do consider a seat cane. You'll be so glad you did.

Babette

[erikainorlando]

Thanks so much you guys..It is a real life saver to be ablt to talk to others who can empathise with the frustrations of just basic living with POTS.

I am not sure how I would make it if I didn't have a place to express the mental challenges of dealing with this physical illness.

Brye - can't even imagine having to change diapers with POTS..you rock!

[erik]

The simple act of "standing in line" is one of my all time worst situations! Now that I know what is going on I try to fidget & work my legs a whole lot to keep blood going, but in the old days this was just a mysterious symptom that was really scary and made me think there was something very very wrong with me. Well, I guess there is... but at least I understand it better now

I am an "inward reactor" so I don't tend to snap at folks... but I will feel very weird, think strange things, become very silent, etc. Just as there is ADHD that is impulsive, there can be ADHD-PI (primarily inattentive, lacking the impulsive thing)... and I think there can be similar variation in anxiety & physical anxiety responses. Either way, I get an anti-social response... more of a "hermit crab" than a "crabby crab"... but a "crab" nonetheless!

[mvdula]

HI everyone,

Well, I'm fortunate that standing is not usually a problem for me - I don't pass out and don't feel bad unless I have already done too much or it is hot, etc. But, please don't feel bad about venting here - most people have no idea how it feels to have POTS - it is so invisible - and we usually look fine. Mt struggle is mainly with not getting depressed/anxious/sad about symptoms. I have 4 kids, so I do a lot (thank God that I can) - like go to the store with them, etc. It is scary though when I get a sudden 'episode' while walking thru the store: hot, weak, adrenaliney. My kids do know that I am sick, so they help if they can. My almost-11 year old son carries just about everything (and he is so skinny!) - loads and unloads groceries, loads very heavy things, like 24 packs of water - onto cart, etc. They don't have much choice but to help - and I suppose they are better for it. But, I do get very crabby...um, actually I would call it nasty...with others, with the kids, etc - hard not to have a short fuse when you're ill - or even just when you're scared you're about to become ill. Living in Chicago with the cold/snow and 4 kids is not easy while living with POTS. I am very thankful to be able to do what I can do - and that I realize I had a nice long remission this spring and summer (still do to some extent - just somewhat relapsey) - I even fast-danced at a wedding for at least 30 minutes - and kept wondering why I didn't feel bad - can only see these periods of time in retrospect tho - I had fewer than 1-2 palps a day for a few months! Now I am back to.......maybe between 15-35/day that I feel. Anyway, please don't feel bad about sharing these hardships - we all understand!

[scarfgirl]

I find walking with a cane helps, because I'm still WALKING and therefore pushing myself, but the cane kinda gives ppl a clue that I might need some help with things. And while I generally don't get crabby with people (like someone else said, I'm an inward reactor) I've learned to ask for a chair or to skip in line or something when I'm not feeling well.