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Well That Went Terrible


puppylove
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My parents got us tickets to the circus and I was so excited because I love the circus. We were all going to go as a family which we haven't done very much at all because I never feel up to it. Today is a very bad POTS day. I wasn't going to even try to go but my family convinced me because they really wanted me there and the tickets were very expensive. I have been pushing myself so I tried. It was a nightmare. There was a two mile walk to the building and I got so nauseous. By the time we climbed the stairs to our seats I was shaking and in tears. People were looking. I sat down but there was smoke, fireworks, loud music, blinking lights. I just couldn't do it. My Dad had to take me home. So I managed to throughly embarrass myself, make my family mad at me, and miss out on one of the things I used to love all in one night. This sounds pathetic when so many of you have to go through so much more. You guys are the only ones who understand- thanks for letting me vent all the time.

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Puppylove,

I'm so sorry to hear that your night went the way it did :(

It's soo hard to know when to push and when not to. On another day you might have pushed yourself and been fine. Your family knows that you tried even though you weren't feeling well, so no one should be mad at you for that. I have pushed myself at times because I wanted to try to be remotely normal for my husband and son, but I have ended up being miserable.

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(((((((PUPPYLOVE))))))))))) - I'm so sorry Darlin - things like this do happen to us. Gota give you props for trying though. You might have been okay if they had've dropped you at the door and not had to walk so far. You just have to figure out where to use your energy and walking to get in wasn't the best choice. And the flickering lights will get to the best of us - with our over hyper systems all the busyness will get us. Hope you feel better soon. Hang In There!

Issie

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I am so sorry puppy love. I am sending you all the love, hugs, and positive affirmations that you deserve.

I think the hardest part of this syndrome is not being understood by our families. I hope someday your parents will understand, but you always have your Dinet family. :)

Trish

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Dont give up on trying. Its so easy for people to give up in general and even easier for us with our syndrome. This round pots won next one you will. Your family will get over it. I'm sure they just want the best for you and dont want you to miss out. Keep your head up! :)

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Hugs .. I'm sure many of us here have been through this. It's only natural to bite off more than you can chew when trying to learn your limitations. Been there done that and will do it again..

Personally, I applaud you for trying this. And now I

know why I don't want to go to the circus. Walking 2 miles or even 1/4 of a mile would've set most of us up for a rough evening. But all the smoke, firecrackers, etc would've left me in tears too.

The important lesson to be learned here is that you tried and you're going to keep trying. Just keep

your outings less stressful.

Tc .. D

Ps. After 22 years of being disabled, I'm experienced at crying or feeling horrible in public. I just give myself a few minutes to regain my composure, laying down always helps and/or eating help me and I can stay out. Just to be clear .. I still feel like poo but I'm not crying or feeling frantic anymore so everyone thinks that I'm "normal".

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So sorry, Sweetie. Give yourself credit for trying and I hope your family will understand. I guess experiences like this teach us what our limitations are and we just have to be more firm with those around us who want to push us. I hope this is a temporary situation for you and you will soon be able to enjoy the circus again. (((hugs))

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Thanks guys. It's just so hard because my family was mad at me. And no matter how much I explain to them it's not my fault they don't get it. It's like the rest of the world already doesn't understand and now the people who I used to go to with all my problems don't get me either.

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I'm having a bit of this issue. I've recently ruined a date and an outing with my mother because they could tell I was not enjoying myself, despite trying to make the best of it. I feel bad, but I've also gotten to the point where I'd rather not go than to spend the whole time miserable and feeling extra badly because I can't help make decisions or keep up conversation. Either way I have to be the "no fun" person, but at least one way I don't have to feel extra sick.

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puppylove,

I am so sorry you are still struggling with your family. I think you should be really proud of yourself for trying, and, also really proud of yourself for eventually saying your body had had enough and you needed to go. It is not always easy to stick up for yourself. As mentioned in Harry Potter, "It takes quite a lot of bravery to stand up to your enemies, but even more to stand up to your friends."

Keep looking after yourself and never stop trying. Big hugs for you!

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Oh, Puppylove, I am so sorry this happened to you. It's such a pain when you are looking forward to enjoying something, to being normal, and the "condition" won't let you enjoy or be healthy for even one day.

I so understand where you're coming from, from the frustration of not being able to enjoy a small piece of life, to feeling frustrated, and guilty, and everything else that your family takes your condition out on you. I'm in that boat a lot of the time, too. My son told me, about a year ago, "Geeze,Mom, you used to be hands on, almost too hands on at times. Now, you're not hands on at all." I felt soooo guilty.

I am so proud of you for trying. There are so many days I don't even try anything out of FEAR that something MIGHT happen. For you to even attempt going to a circus, with all of the stimuli, people, dust, etc., with your disorder, makes me look at you with awe. I'm so sorry it didn't work out, but wow, to have even tried such a thing, for me, would make me feel a bit stronger.

Hang in there, Pupplylove, and you did come to the right place. If anyone understands, it's those of us who are in the same boat.

Hugs to you,

Lindajoy

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One more thing, sorry, I should have included it above. What I've been told by therapists over the years about my family's lack of understanding and support, could come from several sources.

One, they could actually be poopy, selfish people who truly don't get it and won't ever get it, due to their ignorant, selfish attitudes.

Two, they don't understand chronic illness because they've never actually had to deal with it, so it's so foreign, they simply cannot comprehend, thus can't truly provide the understanding and support you need.

Or, Three, they understand, but they 1) miss the old you and grieve her every time they see you, so they're dealing with their own pain with this, as well, and / or 2) they want life to be normal, just like we do, and when it can't be due to "the condition," not YOU, but The Condition, they grieve the loss, too, and since you're the most connected with the disappointment, they take it out on you because it's hard to actually get mad at a medical condition that can't stand on its own two feet.

My kids remind me, at times, as does my entire family, how I used to be when I was well. Things we used to do, places we used to go, etc. When I can't do something with them, or plans have to be cancelled for something due to my illnesses, they do sometimes get mad at me. But, I don't think they're so mad at me as they are grieving for what good times we used to have and want to have again.

They also get scared when they see me so sick. They're afraid I won't be around for long. Many people, I included, get angry when they are afraid, so I try and cut them some slack. Our illness is hard on everyone. We all walk around with fear, anger, grief, guilt, frustration, you name it. It's hard.

I'm not saying that their anger at you for not being able to participate with the circus family outing is okay. I'm just saying, I wish things could be different for everyone, but if they get angry, it could be for several reasons, not just that they're mad at you, but maybe at the illness, maybe they're grieving, etc.

Or, they could just be poopy. :)

Hang in there, Pup.

Lindajoy

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  • 1 year later...

This thread is really old but I wanted to say I just got back from the circus, I decided to try again. This year went great! I got a little over stimulated and dizzy but I was okay and had fun. :) Wooo I must be making progress!

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