ANOTHER EPISODE

[Sue]

Ok I totally give up. I was feeling really good today, so I decided to go out for a little while with my mom and sister. Well a little while turned into a long while. I kept telling them I was getting really tired. But does anyone listen!!! Well guess what. The next thing you know I'm on the ground having a typical episode.

My sister, I love her dearly, is trying to tell me its ok your just having a PANIC ATTACK!!! Where she gets that I have no idea. I felt my pressure drop, that blood sucking out of your body feeling, arms and legs turning to rubber, HOT HOT HOT, so here comes this macho type paramedic type and he's just looking at me like my god what do I do with her????? I told my mom just take me home, NOW... now I'm shaky and getting a headache. and yes I made them leave. I have tried to explain to my family a million times what is wrong with me. They just don't get it!!! So what do I do. Well one good thing came out of it. I am wearing a heart monitor right now for Dr. Pelosi am hoping whatever he is looking for may be on the last transmission I sent over. I would NEVER wish this on anyone, but you know maybe just a day in our shoes might just make people understand Oh I get so aggravated.

I still am on this Lexapro too, it doesn't agree with me at all, I see Dr. Grubb on Tuesday. May have to beg for something different.

I am so sorry for ranting, but I thank god I have somewhere to go to get this all out. I love you guys for being here.

Sue

[denabob]

Bless your heart! I guess you need to tell your family that you can only go with them if they agree to bring you home at a designated time! You have a real illness and they need to respect that! I try to educate any one who I will be out with that when I have to go I HAVE to go!

Good Luck in the future and Hope you feel better soon!

Deanna

[EarthMother]

Family .... doesn't the word mean sour milk in latin? (I jest.) But it is often the case that those closest to us, who love us with all their heart, really can't accept the fact that we are ill. They don't want us to be ill. It makes them face their own mortality, the fragile balance of life and illness. They don't want to believe this could happen to them .... so ofcourse then it must be something wrong we are doing.

Bless you for being so strong and succeeding to go out on your outing. Try not to judge the event by what happened at the end. You did really well. And when you feel a bit better, you'll go out again. But maybe take cab fare with you.

Good thoughts,

EM

[MightyMouse]

Well, I suppose on the good side, you're stressful event was captured on your heart monitor!

Oh gosh do I ever feel for you. Sadly, I just don't go any place with my relatives when I don't have a bail out option (I can still drive so sometimes that means I take my own car). However, even with that, I've had to give up on hoping that my family will "get it."

If they happen to get to that place of understanding, I will just accept it as a lovely gift...but if they don't get there, I don't have to be disappointed. I still have my moments of wishing for that kind of support...but on the best note, I have that elsewhere in my life, which is more than many people can say (ill or not).

I would love to hear how others cope with this issue...somehow it's popped up on this board at least once a month in some form or another. Same thing on NDRF too... seems to be a fairly universal experience, be it with a family member, friend, coworker, etc.

Nina

[danelle]

Hi Sue, I TOTALLY understand!! To the point that it is sickening. My family just doesn't understand either. They all think that when I start to feel bad, weak, shaky, etc that I will be just fine. But nothing makes me madder than when they call me lazy! I all ready have so much guilt and low self-esteem because I am not able to work full-time(can't even make it to work sometimes), I can't be super-mom, super-wife, etc etc etc. Lots of my family say "you just need to exercise"-well, I tried a cardiac rehab program with one on one help and I just couldn't do it. It was either that or work and I couldn't do without my income. My family said I should have stuck with it longer and it may have helped-it may have killed me too-atleast it felt like it. I would have to sit outside for 30-45 minutes afterward just to be able to walk to my car. Meanwhile all these older folks 70-80yrs would just exercise away and go out to lunch afterwards-URGH!!!

I sympathize with you so much. If your like me, you feel all alone. I have even told my family several times to please get on this site or any site and learn about POTS but NOONE has taken the time to do so. They would rather just tell me that I am ok and I'm lazy. It has really put a wall between me and my husband, in particular. I just know that if a family member of mine had a chronic debilitating illness I would want to learn EVERYTHING I could about it.

Like you, I am SO thankful for this site. I feel like all you guys here are my "other" family that I can talk to and do understand me. And for that I am greatful-very greatful.

I too don't go many places with my family unless it is absolutely necessary and that is a true shame because I am also afraid to go anywhere alone-so I just quit going places. That means even the grocery store. I feel like a prisoner to this thing and I am sick of it!!

Sorry to rattle on, I just want you to know that you are not alone in this thing. I'm not sure why our families are the way they are because we know that they love us but sometimes they have a **** of a way of showing it!!!

PS I decided to drive to Dr Grubb's instead of fly-i just don't want to take the chance of having any complications. I wish I could meet you but I think you said you are going home Tues evening? My appt is Wed morning and I will be staying at the Hilton-thanks to everyone for that info. I will be there Tues. Maybe I can catch up with you then, just let me know.

Vent with us anytime, because WE ALL understand!!!

Let us know what your monitor showed.

Danelle

[Dawg Tired]

Yes, URRGGG - I can distinctly hear my family - even my 12-year-old son - saying "If you would just exercize"!! Luckily my husband DOES understand. I am blessed there, he knows that when I say it is time to go home that it is time to go to the car, recline the passenger seat, put my feet on the dash and GO HOME.

[DawnA]

I can so relate with everyone!!! I am sorry others have to go through this too. It is so frustrating. I have lost contact with a lot of friends, because I just can not keep up. I am so sick of hearing you need to exercise or that I am depressed. I usually go shopping on my own. I feel blessed when I feel well enough to do this. Then I can go home when I want. i keep a pillow and a blanket in the back of my car. I have really cut most of my social life out and say very little about my illness, because I have been called a hypochondriac many times behind my back.

My husband and I are going through a difficult time. He is very frustrated with how little I do around the house. It does not help that I live in a tri-level,which has three flights of stairs. This makes it very difficult for me.

My husband has three weeks off this summer and is planning a big camping trip. I love the outdoors, but I am not looking forward to it. I have a neuromuscular disorder which can make it really hard to walk. THe problem is..I have good days when you can not tell anything is wrong with me. People just can not understand the fluctuations we can go through. They always assume that I am coping out or just lazy. It gets really tiring always defending yourself. I wish my husband would also read some of these posts. Then he could see it is not only me. I wish Drs would read these posts, so they would not think you are crazy when you mention symptoms. My husband has been getting very angry when he makes plans about the trip and I tell him that I can not do them. I am going to see one of my Drs this week re my abnormal EMG. Maybe he can talk some sense into my husband. I am really working on trying to cope with my limitations. Others make it so hard to do this. Hang in there Sue. I hope your family listens when your monitor proves that you do not have panic disorder. Then maybe they will read some liturature on what you are going through.

Dawn

[purplefocus]

Of course I can sympathize with all of you. Fortunately I have a husband that takes my symptoms very serious and a 12 year old son that is very catering at times such as making sure I have my water with me, etc., my two year old son will even bring me his blankie when I am having a really bad time. But there are those people that think I just don't want to work any longer, and maybe I have a mental problem, yadayadayada. You know what I think would be great. To have a pamphlet like you see in doctors office about hypertension, diabetes, etc. If we had one about our illness and all the symptoms and how debilitating it is, words to make them understand chronic illness and words to make them know we don't want to be this way, and to be happy with us on our good days, and that we are not lazy..............we all want our old life back. Has anyone seen any type of pamphet like this or have any ideal how we can get one made. It would be great to just be able to pass it out to our family, friends, even nurses and doctors. What do ya think?

[Sue]

Thank you so much guys for all your comments. And yes I do think of all of you as my extended family. I am glad we can be there and understand each other when the rest of the world can't. I love you for that.

Today is better. I talked to Dr. Grubb this morning. He took me off the Lexapro. I have now gained more than 40 pounds and still just don't feel like myself. I am back on Celexa until Tuesday when I see him. I am hoping the weight will come right back off at least some of it. I can handle eating "Bunny Food" for a while. but I don't excercise very well. I have read some posts on pilates I am going to try those.

By the way there are some pamphlets that Dr. Grubb use to have. When I go on Tuesday I will see if I can grab a few. If I can I will let you know.

Thanks again for lifting my spirits AGAIN!!

Sue

[denabob]

Dawg Tired: And I thought I was the only one who rode around with my feet on the dash!

I'm very lucky to have friends who completely understand as a matter of fact my best friend has been with me at the Dr for testing ( someone has to stay with me because I usually go for about 3 days and stay at a hotel -my mom and boyfriend have also went) it helps because they can see on the monitors that it is NOT in my head and she actually usually tells ME it's time to stop. She says my eyes get red and cloudy and I start to slow way down so before I can say anything she( they ) tell me it's time to sit!

My oldest daughter has more of a time understanding. My illness limits what she can do and she struggles with that! She's 11 so she's in the world revolves around me phase.

Sue: Is there any way your family could take turns going to the doctor with you so they can understand better?

[Sak]

"Just a panic attack"...the words of someone who has never had one.

They're debilitating; I had them on a weekly basis for three years, and they made me a recluse. I never wanted to be more than a few feet from a phone, so I could call the paramedics; every time I thought "This is the one that will kill me." Adrenaline triggers the deepest kind of fear we can feel; the panic mode is intended to make us run from danger, but that reaction can turn against us. Panic always made me want to run--I couldn't sit or stand still; I felt like there was a titanic weight above me, ready to fall; and I had to run to keep away from it.

[Sue]

You know its funny you ask, my family has gone with me on several occassions and still.... I just talk to my sister a little while ago, she is still insisting i am having panic attacks. This is the same sister that freaked out when she came with me to have my tilt table test done, I was so sick afterwards they had to carry me out...I basically just told her to believe whatever she wants. Some people just don't listen.

[Guest Julia59]

You just have to wonder sometime's if some people are just not capable of understanding basic human physiology.

I know panic attacks are very debilitating, but come on, we have a lot more going on to NOT KNOW something else is wrong. They need to come up with a better name for these attacks too, "panic attack" is just not very dignified.

Right away you are labled--------and that is WRONG. Dysautonomia is bad enough, without having someone accuse you of being a hypochondriac.

I have actually printed some of these posts before, and gave them to family member to read. Not only does my family think i'm a hypochondriac when I do this--- I also wonder if they think everyone else on this forum is one too---just by they way they look at me when they read the postings. At one time my mother accused someone of trying to get attention because they were wearing a wrist monitor at Dr. Grubb's conference. Little did she know, that it was this persons only warning of letting them know they were about to pass out. Didn't they hear anything Dr. Grubb said?

Just makes you want to puke sometime's doesn't it?

Julie ---------------------------------------------

[DABS]

I sure can relate to what everyone is saying. I'm not driving right now and the only person I will go out with is my husband. He is the only one that truly understands. He knows that when I say I need to go or I need to sit down that I mean it and he responds immediately. I know I'm sticking close to home right now but thats okay with me. I know that someday I will be out and about again. My family on the other hand thinks that I NEED to get out. They say things to me like if you'd just come out with us you'd feel better. NO WAY! They don't get it. They are welcome to visit my home whenever they want but for now I do things on MY terms. I've only just recently taken control back and it has helped me tremendously. I'm longer trying to put up a strong front and trying to please others. I guess that is the role I've taken in my family. But I had to give it up in order to take care of myself, my husband, and my daughter. I've learned that noone will do it for me. I have to do it myself. Its been an empowering realization. Hopefully my family will learn to understand in time and love me anyway. But for now I can't worry about that - its a waste of time anyhow. --- Debbie

[Deb]

Debbie, all I can think of is - You go girl!!!! I had to do the same thing. I decided I wanted my life back and I wanted it on MY terms, not others. So I do what I can when I can. My husband completly understands and backs me up, most of the time. He only disagreed with me when I said it was time for me to start driving again.

I know when enough is enough, and I politely say, I need to sit down, and I sit down. No apologies. I do try to avoid being in a situation that puts me in a postition where I can't sit or rest somewhere. The worst is going shopping with someone other than my husband. I did that once, and believe me, it won't happen again for a long time. It is hard to deal with sometimes because I used to go hiking, and was very active. Now I find joy is doing the grocery shopping alone. Ahhh, there's better days ahead for us, I know it.

[DawnA]

I am glad to see I am not the only one who finds joy in going grocery shopping alone. I feel fortunate that I am able to do this. It is the small joys in life that I have been trying to focus on.

Dawn

[morgan617]

i am on event monitor too and the scheduler told me it was all in my head! i told the person hooking me up i have no patience for that kind of treatment anymore and he said he was going to report it. it is so frustrating. i had that stupid 36,000 dollar ablation last year for all in my head stuff. that makes a lot of sense anyways, my sis bought a ticket for me to fly down to see whole family. had to say no thanks. she understood but they don't. just one day in my shoes on a "good" day is all it would take for them to see. if you aren't bald from chemo, or missing body parts, it just isn't understood. morgan

[migraine]

Wow - soooo many emotions from this topic. It's hard enough to deal with this disease let alone put up with everyone around you that doesn't believe it exists. It's like a double wammy. I just took the advice of another member on another topic...I just say I have a heart condition, it seems to help.

My Mom is a nurse and has been with me at all my tilt-tables and so on. She has been my rock through this whole thing and I am so lucky to have her. My husband is a different story. He believes that I have these illnesses, but does not believe that they are all related to POTs. He also feels if I would just excersise and eat right...everything would go away. I come home every night and tell him about what I read in this forum and all of your experiences. He thinks we are all nuts and is ambarrased that I have discussed such personal information on the internet.

I think I'm going to take all of your advice and start making him come to these appointments, seeing the tests results as they occur, and listening first hand to what the doctor has to say. He seems to be compassionate when I'm throwing up or passing out, but not when I say I just don't feel well or I'm too tired.

We rarely go out for an evening because he knows I will get sick from something I eat, get a headache, or become too sleepy. We used to go to a super bowl party every year. I would either get a migraine before we left or sick from one of the various foods at the party and have to leave early. Eventually we were not invited anymore.

I know I'm making my husband sound like a jerk, but in reality I understand his feelings. I am such a party pooper. In knowing this I have tried to make adjustments. Rather than going out to dinner, a movie, and seeing a band...We usully just go to dinner.

If we go to a party, performance, or wedding reception I will drive separately. That way I can go home if I'm sick. I am also very supportive about boys nights out. I also don't complain much if he works late or wants to go out after work. I trust him. And my hope is that he will not feel trapped by this disease and able to be there for me when I'm really really sick...and though he complains, he's usually there.

As for everyone else I just say I have a cardiac condition. If they don't understand I'm sure they think I'm nuts...but Oh well!

As for a pamphlet...that sounds like a wonderful idea! So many of you have metioned doctor Grubb. Would he be interested in putting something together?. I would love to have one to pass out to doctors and nurses every time I go to the ER or so on. And if I have an episode I could just sort of hand it to whoever is with me. Any volunteers?

[Sue]

Migraine

Send me your address, and I'll mail you out the pamplet I picked up at Dr. Grubbs

breystarr@aol.com

Sue

[futurehope]

Migraine, For whatever it's worth, my husband has been with me to the TTT and to an initial visit to NIH with Dr. Goldstein. He does NOT come in and ask any questions of the doctor, nor has it changed his reaction to my problem. I've concluded that it is really difficult for a person to understand something that is RELATIVELY unheard of and invisible. Especially if they are uneasy around "health" issues to begin with. Probably, they think we are being passive aggressive and feel that we are manipulating them with our complaining and behaviors. We ARE being manipulative. We feel terrible, and we need help and understanding, so if that is manipulative, oh well.

[CJMANN1]

I AM VERY LUCKY TO HAVE THE SUPPORT FROM MY FAMILY AND MY HUSBAND IS REALLY GREAT ABOUT IT. HE ALWAYS PAYS CLOSE ATTENTION TO WHAT'S GOING ON WITH ME AND IF I GET SICK HE GETS ME SAT DOWN OR LAYED DOWN. I'M SORRY YOU HAVE TO GO THROUGH ALL OF THAT WITH YOUR FAMILY THEY SHOULD BE SUPPORTING YOU.

[morgan617]

i must say i do have a wonderful hubby and son who are very supportive of me. my husband will look at me and say, time to go, or go take a nap, or i'll fix dinner, after he's worked a 12 hour day! and my son carts me all over as i can't drive anymore. so i really shouldn't let people who mean nothing to me get to me, but sometimes it's just hard. what we want to do and what we do aren't necessarily the same. i hope as more knoweledge comes out people will be more understanding. morgan

[DawnA]

I have found with medical workers I tell them I have dysautonomia vs POTS. When I say POTS they look at me like I am nuts. Even after explaining it some have believed it was a factitious illness. Dawn

There is nothing I hate more that people saying it is all in your head. It is a great feeling when you can prove htem wrong. I have mentioned this before...My old neurologist insisted I had nothing physicaly wrong with me to cause my abnormal gait. I insisted that it was in my muscles and spinal cord. I stuck with her hoping I could change her mind. Ihad an EMG done by her supervisor that proved their was something wrong with both my muscles and CNS. They are sending a copy of the report to my old neurologist. I hope she learns something from it, so she does not make the same mistake again with someone else.

People who say it is all in your head are judgemental and ignorant. Good for you not tolerating it. Noone should. Idid for to long!!!

Dawn