Feeling Down :(

[Jacquie802]

Hi,

I am just wondering how people with POTS manage to find friends who understand...I feel like none of my friends truely care or understand me. Tonight isn't the first night I have felt like it, but here's what happened...

I had plans to go out tonight, so through out the whole day I look lots of liquids, etc. I wasn't feeling good (I woke up at 3pm) My friend I was supposed to go with didn't have her car so I said I would pick her up. I wasn't sure exactly how to get to her house because they moved there not to long ago, so I looked up the directions online. I called my friend and told her I was on my way and would be there in 15 minutes. So, I get to my friends house and she still isn't home. I call her cell phone and she says she will be 15 more minutes. So time passes and I finally leave after waiting on her street for 15-30 minutes. It's not like I could have waited in her house because I wasn't exactly sure which house was hers! And honestly when I am expecting someone to pick me up, I am home.

I know this may sounds stupid, because there are other worries besides friendship things, but I really am upset. I never get to go out with my friends becaues I never feel good enough and I don't go to bars, etc. due to being sick. I was really excited toinght because the friend I was supposed to pick up and I were meeting up with our other friends for a birthday party at someones house. It took me hours to get ready but I didn't care because I really looked forward to going out and having fun.

I knwo some ppl may wonder why I just didn't meet up with my other friends at the house, but the reason is that I didn't want to drive alone because I haven't been feeling great and I get nervous driving on the highway because last tiem I did I felt very dizzy, etc. so now I don't like to travel alone.

Anyhow, I was just wondering if there is some secret to having understanding friends. It's not like I get out of the house much to meet any new people.. On a positive note I am going to eat an Italian Ice and work on my puzzle.

Thanks to those of you who take the time to read this! Goodnight

Jacquie

[Stace915]

aww I'm sorry you had a bad nite, I know exactly how you feel. I was supposed to go out for a friends bday tonite too, but I didn't feel good and I slept till 6pm! I had told her that I had to see how I felt b/c it was a long drive, and that on top of going to a bar was a lot for me to handle. When I called to tell her that I couldn't make it, she said she understood but sounded annoyed, I wanted to go more than anything but no one seems to realize when we don't feel good we can't function. Hope you enoyed your ices, sorry I don't have better advice, just wanted you to know that you're not alone!

[nadine]

I am not sure where your friend was and did she ever call you back to see why you left? I think if she is a good friend, you should tell her exactly what you are feeling. I have found even with the long hx of CFIDS, before all the recent probs. , people just someitmes don't get it. It is hard to explain what we worry about on a daily basis. My friends are very understanding, will plan events at my home for me, pick me up, whatever I want to do. It is usually me who is hesitant because I never know how bad I will feel. So the arrangement we just made is -I explain that I may feel very badly and need to a) lay down b- )go home, if not home c) may need asst. with walking and can't walk far or the ultimate- d)faint . I have now realized- I can't isolate myself because of this. They want to take me to a new place to eat and I am concerned, because like you it takes so much energy just to shower and get ready, but I will give it a shot. Whatever will be, will be.

Hope you get another opportunity soon. It doesn't hurt that two of them are nurses and would be of assist. if needed-LOL

[ellen]

Jaquie, Here we are. When you need friends who understand your illness, come to the Dinet website.

I'm sorry you had such a disappointing evening, but you're not alone.

I get alot of comfort reading the posts of all you other "potsies". -Ellen

[willows]

So sorry that you have had a bad time , the problem is that most of our friends are what I'd call 'normal people'............they go out to work, eat out, and go shopping without thinking, where as you and I get excited just at the thought of 'doing something different' other than sitting in and staring a four walls.

For us to go out is a wonderful pleasure that we plan for and make sure we are well rested in the hope that we dont become unwell and have to cut this opportunity short ...........again.

It takes a really special friend to totally understand just what it is like to lead this sort of life .

Look if you get fed up I'm here nearly every day, all day.............natter to me, rant and rage at me, after over 30 years of disappointments and being let down by 'so called friends' nothing hurts anymore.

Kind regards and keep you chin up ...................Willows

[Jacquie802]

Thanks for all your kind words....

[mom4cem]

Hi Jacquie,

Hugs to you. I hope you have since talked to your friend.... It is hard for others to understand what one is going through. Maybe you could try the spoon story. I know that is posted on here as well as other sites. It may help your friends to understand what it takes for you to get out and do what you do every day.

Wish we all lived closer to support each other. Boy would that be some town if we all lived in the same one. It would be the most helpful and supportive one around.

Hang in there and I am sure there will be another opportunity soon. I am also sure that if you explain to your friends how you feel they will understand.

[Jacquie802]

Hi (again!),

I have tried to explain to my friends but they just don't get it. I am tired of explaining things. My friend Amy has a friend who was just diagnosed with NCS and she's like I feel so bad she's been like this for a few months...and I'm like HELLLOOOO I've been like this for 3 years...Not to make it out that I'm worse, etc. but it just bothered me that she doesn't acknowledge that I am sick, but does that her co-worker is. Maybe I am being bitter who knows?!

But thanks again for all your support! Glad I have you guys!

Jacquie

[Ernie]

Friendship is about being able to share and exchange.

We need to be able to offer our friends what we expect out of them.

[Jacquie802]

Well, that's the thing. I listen to all of her problems...Her problems mostly consist of her parents asking her to empty the dishwasher, but she won't feel like it and they get mad....I listen to many of her problems over the phone and in person, etc. When it comes time to talk about something I am upset about I get, "okay I gotta go, talk to you later." NO JOKE!! I mean she has helped me out, but sometimes all a person needs is someone to listen.. And it's not like I always talk about my problems either, so I don't know....

Jacquie

[nadine]

Jacquie-

Just wondering if you could print of any of the information from the website to share with your friends? I don't know, maybe it would help. I am considering this, although my friends are very understanding, I still have a hard to explaining exactly how I am affected by all of this. I also get tired of repeating it over and over. I was thinking of having something printed up to show them and the medical providers who also don't have understanding. Just a thought. Maybe sharing some of the stories that are on the website and being able to start the communication with them as to how you relate and how devastating this has been in your life.

[Ernie]

It seems like a one way friendship.

You have to find where the type of people hang around and go there yourself and meet people. That's how I meet my new friends. They are all disabled and we can understand each other. People who have been sick for a while tend to understand health issues better than healthy people, even if it's not exactly the same disorder.

[dizzygirl]

Hi jacquie

I'm sorry that you friend let you down... that really bites!

When i started to get really bad in 2002.. I lost just about all of my friends.. either b/c they didint understand what was happening- or thwy did understand and felt helpless in there being anything that they could do to help me..

my friends who stuck it out with me since 2002.. I consider true friends.. as they stuck it out with me thru some very rough times.. and now when things seem to be getting increasingly difficult.. support shows up litterally on my doorstep.

Though i lost a good many friends... I have gained some wonderful friends who I feel very blessed to be in my life... some from here on the forum!!!.. and had i not gotten sick I probably would never met these folks..

what I'm trying to say I suppose is.. I know it seems incredibly infuriating your friends lack of compassion and understanding... But Hopefully some people will be led into your life to fill the lonelyness.. who will aprreciate you..and will have some compassion and common sense to kind of bend with life.. and have some cleaver idea's to bring "life" and the "party" maybe to you.. on days that you just cant get out and about..

cheer up dear and hang in there...I'm sending you a PM too by the way! you can call me if you are feeling blue or frustrated or just plain board!! I wish I lived closer to ya we could hang out.. next time i come to mass for a visit i will let you know!!

BIG HUGS!

linda

mom4cem i like your idea of all of us living in the saem town.. we could call it "POTSYVILLE" lol !.. lol.. hahahaha

[d4g7]

Hi Jackie,

I'm soooo sorry to hear about your misfortunes.

I had a similar problem - get the brochures from DINET - they helped me expain what POTS is.

That's all I can offer I'm afraid.

D

[corina]

jacqui, it is so very hard on all of us to have real good friendships. i think what counts is that only the people who care about you understand. i've seen "friends" that just don't care enough and don't invite me anymore and friends who understand.

i am sorry that this is part of having a chronic illness. i truly hope that there will be enough friends left for you,

love,

corina

[Tammy]

We are your friends! We share in your suffering and your hopes and we don't judge you when your not up to "talking" with us.

Hugs -

Tammy

PS. I've classified almost all my friends as "fair" weather friends - and try not to shed to many tears when I feel let down by them - it's not worth the stress and feeling even worse from worrying about it

[Guest dionna]

hey. i'm sorry that your friends just don't get it. i agree with willows. i feel fortunate that my friends do understand that i am sick. i pass out so much that everyone i am around has seen it atlest once and so they can visually see atleast that part of how POTS affects me. my face can never lie either. i try to be tough and tell everyone that i am okay but they see how pale i get or how flushed i become. they notice my muscle twitching, they see the vomiting or have been vomited on, they see that my pupils aren't right, they see how weak i become, they all know that i'm not lazy so if i can't do something- they just know i am not feeling okay, and all other sorts of visuals. i have even had my friends take me to the doctor and they go back with me when i see the doctor so they see how my pulse and blood pressure and temperature does. i think all the visuals helped them understand. i know that it is very hard to get people to believe you and understand. i definately understand that. i had to prove to the marine corps that i wasn't just faking anything to get out of the military. i had a lot of mental health appointments. i also agree with the post about finding other disabled friends. the best people that i have met are also disabled and we all helped each other out. i was with the marines that got blown up and shot in iraq. we all were impaired in some kind of a way but we could help each other in so many ways physically and mentally. when i was in the wheel chair the guys that needs canes would push me and so did the blind marine. the wheel chair was in a way his eyes. i just told him to straighten it up or when to turn and he actually enjoyed it a lot. he was getting to drive something. i also met my boyfriend at the hospital, a marine that was hit with a granade. he is also another POTS patient. yeah, we definately undertand each other and we are best friends. i also agree with printing stuff up for your friends. good luck to you girl and i hope you find some friends that will be friends.

dionna

[JaneEyre9]

Jacquie,

It's tough for healthy, young people to understand chronic illness. I agree with dionna that it's easier for people to get that something's wrong if they can *see* you sick on a continual basis, but with most friends, they aren't around enough to get that 'advantage.' I have found that i try to put on my best "healthy behavior" and appearance to my friends and that ends up giving them the wrong impression. It's a lot like willows said...It's tough to plan your whole day around trying to do one event that most people just take for granted (energy-wise). I think the best advice i have is just to accept people right where they are. If you really value their friendship, hang on to them and accept their flaws. If they are draining you and giving nothing back to you, then maybe try to distance yourself. All you can do is explain your situation and hope for the best.

I truly empathize. POTS is a great sieve for friendships. The good ones stay in and the uncommitted drain away.

Kristen

[Guest tearose]

I've been dealing with this syndrome/disease for long enough that I can say that I slowly developed good-true friends who are the best people in the world. It will take time for your friendship circle to grow but it will. Really! You only need to be more gentle with yourself right now. You did not ask for this nonsense of a syndrome/disease and you are still learning how to manage yourself.

Some of those who don't understand will come back and some will not.

You will make a new group of friends when you are ready. You also have all of us!

best regards, tearose

[Jacquie802]

Thanks for the kind words you all have left me. It just seems like I am never going to be able to go out and enjoy things like the movies, restaurants, etc. Not to mention I'm most likely going to be single forever!!! Anyhow, I really do appreciate you guys! Thanks for being here.

Jacquie