Jump to content

Freaking Out About Dysautonomia


Recommended Posts

Some of you may know me, I've been on this forum for years. I haven't been here recently because it's hard for me to read the posts. It makes me sad.

I'm starting to re-freak. Who knows why.

I read something today and I thought I would share

"People cry, not because they're weak. It's because they've been strong for too long,"

So I guess there are those who feel completely beaten up and defeated, like me. I'm giving you and me both permission to just really feel sad and mad. But then I read something else that we both need to remember:

"Having a rough time? Place your hand over your heart. Feel that? That's called purpose. You're alive for a reason."

Place your hand over a potsy heart and you'll get the ride of your life! PVC's, thready, tachy! LOL! We must have a wierd and strong purpose and must have to get to work fast!

So thank you all for posting stuff, even stuff that I can't relate to. Returning here, I feel so much less alone. I'm going to freak out just a little while more and then I'll be okay. We're all going to be okay.

Kits

Link to post
Share on other sites

I think it's happening all around us on some level.

This instability.

We've lost everything to mold twice.

I no longer have a job due to my health and I am unsure of my future.

I just try to take one day at a time and focus on the basics food and clothing.

We have a different house now but no furniture.

I'm having difficulty attaching myself at all to this house due to the fact that it's so fresh in my mind that we can just lose it to many things, financial, disaster, marriage splitting up is a huge possibility.

I just try to focus on what I can do everyday.

I am afraid to spend the little money I do have on furniture because with no income then it's gone.

I'm not sure what to tell people when they come in...how to explain any if it in a simple way.

I have to try to count my blessings for what I do have.

I have mini freak outs too and just thinking I am in a horrible situation.

Then I start to realize I'm not the only one.

All we can do is try to pick up the pieces and move on and do what we can do.

That's all I know to do right now.

Link to post
Share on other sites

I hear ya and I've only been dealing with this for 6 months so I can't imagine how much worse you feel. Not knowing what's ahead, not knowing how to make things better and feeling so betrayed by your body. It really feels like no one can possibly understand but when I come here, I can't say that anymore. Everyone is battling their own war against these diseases and it is the one thing that gives me some comfort. I also try to tell myself it could always be worse, but I know it's not that helpful...

Link to post
Share on other sites

I am right with you all. My old horseback riding coach's daughter, who was only 43, died of cancer earlier this week after surviving brain cancer as a child and another bout in her early 30's. Someone I was speaking to today said they feel sorry for me and I stopped them and said, "Don't feel sorry for me...I woke up this morning and I'll eventually be ok." We have to remember that every day is a new day!

Hears to our health and our happiness!!

Katie

Link to post
Share on other sites

Thanks for posting this. I'm right there with you.

Good to see you back on here!

Link to post
Share on other sites

Thanks for this. :-)

Link to post
Share on other sites

Hi Kits, it's so nice to see you and other older members return to this forum, whether for support, updates or good news, etc. I truly understand what you mean about the anxiety sometimes getting worse or returning the longer this goes on. I haven't had POTS for as long as you, but I know I am more anxious now than I was in the beginning. In the beginning I was told it would all go away and I clung to that hope and had reassurane of cardios that nothing was wrong with my heart even though it felt like I was having a heart attack every day. The more I reasearch into this dreadful illness the more I realise how little doctors know about it and that in itself makes me feel frightened and alone. Sometimes I think I was better off not knowing what this is and having a label for it. But at the same time I am glad I have a label because otherwise I'm sure no one would have believed I have a genuine medical condition and I wouldn't have found the help I've received from doctors and from this forum. Hugs to you.

Link to post
Share on other sites

Thank you for what you said. It's been very difficult watching my teenage daughter struggle once again to just try to get through each day. She had been feeling so good and was finally living an almost normal life. POTS rears its ugly head once again and I find myself getting very angry at people again for the stupid things that upset them. My best friend is even making me angry with her "woe is me" talk because they can't sell their home. I would much rather have her problem instead of a sick child.

I am a Christian and believe that God has a purpose but boy, some days it's a huge struggle to understand why my daughter should have to suffer this long. If I could, I would take it from her so she could be a normal teenager! It is so incredibly hard to sometimes look one the bright side of things and be thankful but I'm trying.

Brenda

Link to post
Share on other sites

I can relate. For years I belonged to a support forum for fibromyalgia. I quit even looking at the posts as it seemed so many complaints with problems and probably complaining because we all need to vent and our families/friends are not always the most understanding/best avenues--especially when they have health issues of their own and/or do not really know what it is when you look 'good'. It got to the point that it made me feel sad and low. I couldn't handle added worries and up to the daily cheerful hellos.

I'm a newbie but am glad you are back. This place is an awesome place to learn and to share and to support. It has taken 2 1/2 years of transition from neurocardiogenic syncope, to POTS, to now orthostatic hypotension with autonomic nervous system failing me. This summer has been the most debilitating event in my life (including when I got hit/sustained a lot of permanent damage by a car). Finally, the cardiac specialist in dysautonomia explained to me that it was largely in part because of the heat. (And here, another poster alerted me to be cautious with the high humidity, too). We learn from you, so thank you.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...