I'm So Frustrated

[futurehope]

Boy am I frustrated. I've had a diagnosis of POTS for over 3 years.

My daughter and son-in-law live in Washingtom state. She's due to have my first grandchild at the end of June. And they both may be going to Germany afterwards. He's in the army.

I'm already freaking out. Sitting or standing make me sick. I do not like riding in ANY vehicle of transportation, much less a long plane ride especially for long periods of time.

I'm frustrated because I'm freaking out about the upcoming trips and my husband says to me:

"Why Aunt so and so has cancer and Uncle so and so has heart disease and THEY went to Germany to visit their son."

Yeah, great. I'm happy for them. And I answer, "How would you like to travel with feeling like you're going into shock and feeling like there is not enough oxygen going to your brain?" Not to mention all the other symptoms I get of which there are many.

I'm trying to get myself in better condition for this trip. I've just been to Johns Hopkins, and have had many autoimmune tests done. I also have a diagnosis of MG but with no symptoms. SO I'm trying Mestinon again.

I just wanted some understanding from my husband about the stress all this is causing me, AND HE STILL DOESN'T GET IT. Why do I keep hoping he does finally get it? I feel like I'm hoping for something impossible. Forget that he'll ever understand the stress I go through thinking about these travel plans.

I just had to vent. Thanks. I don't expect him to change, so I better change or I'll start feeling like I'm banging my head against a wall. And that's non-productive

[Wufflebear]

I can relate. My husband says I eat too much salt and should not drink so much water...how is that for ignorant! And I have given him info, talked to him about it. We have been together for 10 years. I have finally resorted to just outright saying "do you realize that you have no idea what you are talking about?" That usually makes him be quiet...that I can deal with. lol

I am no help....But you are not alone. (-:

[Guest Belinda]

My whole family doesn't get it! You know when youtalk to people and you know they really aren't listening I deal with that constantly.

A good friend gave me some advice about this...Remember you can't expect people to understand or change thier thinking all oyu can do is change your response to thier ignorance or misunderstanding of your illness! And to just expect that this is the way it is otherwise you give yourself added stressors!

I am sorry for your frustration..my mom for many moths just told me to fake it and smile and eventually my body would smile too!!UGH!

Take care..Belinda

[ariella]

Hey, I missed my sister's wedding because at the time I was too ill to even travel by car to the airport. My parents and sister totally understood, but my husband kept hinting that if I really wanted to I would push it. I keep telling myself that this is his form of denial, otherwise I get very resentful.

Ariella

[dizzygirl]

hi I can totally realte too to family ppl in general not getting it..

Why just this morning my boyfreind told me that my syncope can be CONTROLLED if I just told myself that I wasnt gong to pass out.. and focused on something else.. I'm like UH NO!!!!!!!!!!!!!

My response was well Vin if that is true the I could cure all of my potsy friend who are so sick and pass out when ever they stand or do or dont exert themselves!

lots of comments like well I feel like I am going to pass out once in a while or I get dizzy.. and it doesnt make me sick..

I told him that I dont need comments from the peanut gallery..

I dont have any suggestion for making people get it.. but wanted you to know that I understand.. and wish there were something that I could do to make pple understand

[Poohbear]

I'm so sorry you had this response from your husband. It's disappointing when people don't understand us, especially those closest to us. I would assume you feel you aren't being heard by your husband or others when they make comments like you wrote about.

I do understand your fears about traveling and I can tell you they are valid concerns. The last time I tried to fly I was on a short flight (slightly under 1 hr) and the plane had to make an emergency landing because my tachycardia was so high for a prolonged period of time and I was phasing out. I was so embarrassed by all the comotion.

I ended up in the ER and was later told that since I do not have good symptom control I really should not travel by plane.

In retrospect, I think because I was on a smaller plane (about 30 people) the cabin pressure wasn't as good and maybe that's why my body had such a difficult time. I had experienced an occasional problem in the past while flying but I was in larger planes and the tachycardia and other POTS symptoms would flare but then after 10-15 minutes my body would adjust and I would feel a bit better (although I never felt good traveling by air). I did all the things they tell you to do...drank plenty of water, ate a small meal an hr before boarding so my stomach wouldn't be empty but not full either, had plenty of rest, wasn't stressed, wore compression hose etc.

I know it's very difficult but if I were in your shoes, I would try to figure out what worked best for me and what I felt most comfortable with and make plans accordingly and then stand your ground with your family. Let them know you care about them but that you also have to take care of yourself and while you wish they understood all you can do is tell them your side and ask for their support. Tell them how you need them to support you.

[Jacquie802]

Hi,

My whole family doesn't understand. I would just tell _____ (insert name) that "you know I am not feeling good, so please keep your comments to yourself." Don't get upset, because it does nothing. We shouldn't have to "prove" that we aren't feeling well. Why waste all your precious energy on it...?

hmichel: I would tell your husband that it's fine if he thinks you eat too much salt, etc. but that's what makes you feel better.

Jacquie

[Kitsakatsa]

Yup. All around. I hear ya.

I tell people that it is exactly like having heat stroke and stomach flu and then say

"would you go to..(work)..(vacation)..(dinner)...(the opera).. with that?! No, you would be bawling you head off in bed. Now imagine having it for ___ years. This would not even be a conversation that I would have with you and this would not be a demand that I would make of you. The line is either drawn here in the details, or later in the ER. There is no getting around that".

That type of conversation usually helps. It is frustrating for everyone. I think that co-workers and family members try and wish it away for us and reminders that we are still struggling cause them to lash out at us (of all people).

Good luck. Maybe your doc has some recommendations for the flight- like Ambien that makes you sleep.

[d4g7]

I too am sorry that you have to put up with this ignorance.

I have been through the same things, from being told I am lazy, to that it's all in my head etc.

Even recently my father wanted to come and see me, and I said 'Dad, I don't think it's a good idea at the moment, I really am not well', but he insisted, only to find me in bed, and pretty much unable to do anything. I made an effort to get up and make him a cup of coffee, and fainted in the kitchen - his response was 'Oh, that happens if you've been laying down for too long' - then he wanted to go out for lunch. When I told him that I literally could not dress myself in the state I'm in - let alone drive to a restaurant, sit up and eat. So one of my friends went with him instead. When he got back home, he called all my brothers and sisters, and told them that I had some form of manic depression.

I've given him the brochures on POTS and everything, but I guess you can lead a horse to water - - -

Anyway, now my family all thinks that I have a psychiatric problem, and that the POTS thing is something I made up to cover it up - 'POTS isn't real Daniel, we've never heard of it before' is what they say 'Just admit what's really wrong with you, so we can get you the help you need'.

So, I've had to limit my contact with them - it breaks my heart that my father has managed to convince them that I am mentally ill, and that there is no such condition as POTS.

I don't have an answer for you in your situation. It's very difficult, I know. I guess all you can do is try and make them understand. Some people simply never well. Others will.