Had A Little Party At The Park Today

[bttrflyamby1981]

Hi all,

Just wanted to whine a bit.

I had a reunion of sorts today. Let the kids play with friends kids. Talked and had lots of pictures taken. We ate lunch and just kicked back. I felt fine while there....besides a couple dizzy spells, but that's normal.

We were only there for 3 hours. I think it was reaching the high 90's but stayed in the shade. Had plenty to drink too.

We got home, and not even 10 min later I had to lay down. It's like it hit me from out of no where.

Is this normal for others? Just frustrated because I seem to be getting worse.

My husband is talking about wanting to go on weekend hikes and such and I don't know what to tell him. I know he'll get angry if I tell him I just don't have the energy. He makes fun of me all the time lately and I'm just feeling down and out. I don't know how to help him understand. He says that all I do is talk to sick people all the time, so no wonder I feel blah all the time. (this group is what he's talking about)

The only real support I get and he makes fun of me because I try and check in at least once a day.

Sometimes I wish that I would get really sick and that he would get an eye opener....how sick do you have to get before they listen? I thought he was supporting me, but all along it's been more of a fake concern.

My friends don't lend to much support either...after all, I don't look sick. If they don't see it, they don't beleive it? I feel like stomping my feet and having a tantrum like my 2 year old!!!

Just needed to vent I guess....I don't really feel any better, but maybe tomarrow will be better.

Thanks for listening,

Amber

[Guest sonotech]

I think it is horrible that you aren't getting the kind of support that you need at home, that is so important.

You should tell him that the reason you need this forum is because you need someone to talk to who will listen and believe you and that you aren't getting that from HIM>

Has he been to doctors appts with you. Sometimes hearing it from the doctor can make a big difference, or even printing information off of the computer that explains POTS and how DISABLING it can be.

When I was first dx, my doc printed me a great article fromthe website: www.blackwell-synergy.com

It says : Journal of Cardiovascular Electrophysiology

Volume 17 page 108- January 2006

It describes EVERY aspect of POTS and even mentions how "patients with POTS may suffer the same degree of functional impairment as patients with chronic pulmonary disease or congestive heart failure".

So, if THAT doesn't open his eyes then I don't know what will.

You NEED support right now, and if this is where you get it, then don't feel bad visiting this forum.

Good Luck

Laura

[futurehope]

How long have you been "impaired" from having POTS? I truly think that it takes some time for the other half to "get" it. After you calmly tell your spouse that you will not be able to join him (a few times), he'll get it. I think it took about two - three years of me saying "I can't" for him to finally believe me.

My spouse never wants to talk about my problems or even hear what the doctors say. He figures if he can't DO anything, then what's the use?

Come here as often as necessary. And do try to lower your expectations about being understood. Aim to reach a place in your life where it doesn't matter what people think. You are who you are and there is no way around it. Whether you are believed, validated, supported, or ignored, you still are what you are and the best thing you can try to do is adjust to the situation. You either adjust, or make yourself miserable, and that won't solve anything.

I often carry one of the flyers from this website with me, and if anyone asks questions, I show them the flyer. It helps to have a nicely printed copy of an official looking document to explain your situation. The person will quickly hand it back to you if they are not interested.

[JenniferInOhio]

Hi Amber,

I'm sorry that your husband is not supportive. Mine doesn't really understand either. It sounds like you have a mild case of POTS like I do. I look well and can do most everyday kinds of things. However, I know I couldn't hike that's for sure. Walking, yes. Hiking, no. I can't do anything in the heat either. Shade for me. Anyway, because I function so well, my husband sometimes forgets about my POTS. You should get the POTS brochure and have him read it ~ you can get it from one of the administrators I think.

[joiedevivre516]

Hey, hon.

I totally understand how frustrating and cruel it is when the people you care about the most don't support you the way they should. I wish I could say that getting really sick (surgery, ending up in the hospital) will change that, but it doesn't always. Sometimes people just don't know how to deal with people who are sick or different. If they've never had health problems, they can't see how debilitating they can be unless it's cancer or something of that ilk.

I've also found several articles (many by Dr. Grubb) about how horrible POTS can be, and how it can be just as disruptive as Chronic Obstructive Pulmonary Disease and Congestive Heart Failure. Sometimes having your loved ones actually SIT DOWN and read a medical article about ALL of the implications of POTS really helps. If you want, I can email you some links!

I KNOW you don't spend all your time talking to "sick people." You've got your Mary Kay job and your friends, and I'm so proud of you for that, and he should be, too! And even if you are primarily friends with people who share your disease, that's not a problem. We're not a completely separate race of people, we just share one trait. We're all completely different in our responses to the disease and our personalities.

Just remember how awesome you are - this disease doesn't detract from that AT ALL!!

We love you!!

[bttrflyamby1981]

Thanks for supporting me!!

I'm glad I can come here and get the support I'm lacking at home. I haven't been dx yet.....I think that's my husbands biggest complaint. My point is though, whatever it is that's making me sick, it's not made up.

Two doctors I have seen both said POTS is what they think it is, just don't have the results to prove it. Now I don't have insurance so am stuck at a stand still without meds and am feeling awful.

Thanks,

Amber