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So Frustrated, Feeling Like There's No End In Sight


tobel17
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Hey everyone,

I just need to vent. I'm so darn tired of people looking at me funny when I go up the stairs to my college classes, because I'm out of breath. I'm tired of my dad telling me, 'everyones heart rate goes up when they do things.' I'm tired of medicines, and feeling like I'll never be able to do the things I want to. I'm tired of feeling like I just don't have the strength to push myself anymore, that I've lost hiking and horseback riding and all the fun things I used to enjoy because I just can't get myself to push through the dizziness and nausea and chest discomfort.

The other day was the 1 year anniversary of my first EP study/Cardiac Ablation. I feel like its all been pointless, the ablation didn't fix anything, but it led me to the POTS diagnosis. I almost wish I'd never been diagnosed, atleast when I thought I was just out of shape/crazy I could convince myself that I should just try a little harder.

I feel like I've given up on those things that used to be my passion, the outdoors.

But I guess I really havent. I'm going to Stanford in a few weeks to get a better diagnosis. Wish me luck.. I'll need it.

Thanks for listening

Laura

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Laura,

I'm sorry your having such a rough time. I feel for all of you younger people who are struggling with this awful disorder.

My symptoms were mild when I was younger, and beta blockers worked out for me in my 30s, as my only symptoms were tachycardia, and adrenaline rushes. I had only a couple bouts of chronic fatigue type symptoms for 3 months.

I assume your younger---(I took college classes for about 3 years when I was in my late 30s)----then got really sick, and couldn't work full time and go to school, and it wasn't long before I couldn't work either. I crashed badly in Dec. of 2000.

Try to work at avoiding stress. Easier said then done I know, but I know that is what took me down. Only do what you need to do, and nothing more. People don't understand how we can look normal, but feel on the verge of collapse at the same time. Not having any blood flow near your heart can do that to a person. They need to understand the mechanics behind this stuff, and then they would realize a body can't function normally when gravity is our enemy.

It's even more complicated then that, but in simple terms, POTS/orthostatic intolerance means we can't handle doing things upright for very long.

The autonomic nervous system is affected, and the ANS plays an important role in our daily functioning. The ANS is not covered like it should be in medical schools, and dysautonomia is not well understood by many physicians because of this. EDUCATION on this disorder is needed, and until this happens, not only will medical professionals not understand the severity of this, but it will make it much less likely that friends and family will understand it either. Believe me, at one time, I was almost convinced I was crazy----------------------AND, I know what you mean about wanting to deny your condition. It's so hard, because you want to know so badly what is causing you to feel so bad, but once you know, your in denial on how bad it gets. You still keep trying to do "normal" things, but your body won't let you.

I wish you the bast of luck at Stanford, and hope they can help you become more functional---AND feel better.

HUGS,

Maxine :0)

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Laura,

Sorry you're having such a tough time. It is hard to give up so many of the things that you love to do and experience most; it doesn't help it when "normal" daily living gets difficult, either. It really is heartbreaking at times.

All of us on the forum have had to give up many of the "loves" and "passions" in our lives, to varying degrees depending on our individual situations. In some ways, I feel like parts of me have died during my 4-year ordeal with these illnesses. As a former dancer and athlete, I can sympathize with your frustration at wheezing just going up stairs -- it's extremely difficult for those of us who were very physically active and able to suddenly feel so wimpy and weak and sedentary. And that's on top of whatever battles we're waging with other symptoms. I'm one who's most comfortable "pushing through" difficulties -- I'd rather tough up and smash through barriers than be patient -- so POTS/CFS has been hard. I can't just tough my way through significant drops of BP, post-exertional fatigue, and brain fog; that just makes matters worse. I've had to learn patience.

In addition to patience, however, I found three habits very helpful in coping with loss of activity and separation from things I enjoyed most:

1) I avoided things that made me feel down and accentuated my losses. It meant rarely watching ballet on tape, cancelling dance magazines, removing pointe shoes from my room.... If there were movies that made me feel like a wimp because the actors (stuntmen, really) were doing great feats of endurance or physical prowess, I didn't watch them until I could see them without feeling worse about myself. Something that was depressing one day might be fine (or great fun!) on the next or 3 months later, so I made choices on a daily basis leaving myself room for change. Flexibility is the name of the game!

2) I took note of the things that I still could do. During my two years on the couch, it was little things like the fact that my legs were still strong, I could still do a split in the air (even if it was lying on my back), my turnout had not suffered, and I still had strong feet with lovely, high arches that other dancers would die for. It was something. I still am not able to go back to dance class and my symptoms still severely limit how much I can do at home...but I take comfort in the fact that I can still do a double pirouette on the kitchen floor, my technique is still beautiful when I do a few steps here or there. It may not seem like much, but even those little "tastes" of something that I loved so dearly are precious; I would rather have a little nibble than none at all.

3) I found new hobbies and interests that my symptoms would allow. For me it was photography, embroidery, drawing, colouring, learning more about interior and garden design, birding, packing backpacks with school supplies for needy children, writing letters to soldiers overseas, scrapbooking, getting in touch with friends from our Africa days...and many more. I've adjusted my pursuits as my health has required. When it improved, I was able to do things I hadn't been able to when I was confined to the couch. And my abilities still change daily -- if brain fog is too bad, I skip reading & writing and do things that don't require brain work, like photographing birds outside my window or listening to music. If I have to spend time lying down, I do something lying down. Frustrating as this illness has been for me, I can't deny that it has really allowed me to "broaden my horizons" and develop new skills and interests.

Don't beat yourself up for things you can't control. It is hard to be patient and to deal with so much loss, but you can manage your way through. We've all had to and will continue to. There will always be down days (everyone has them -- healthy or not), but you have to help yourself learn to deal with them. Otherwise, this illness will only make you feel old and bitter and crippled. Look for the opportunities this illness is bringing you.

I would not have willingly chosen to be ill with this condition; the last four years of my life have been laden with many, many tears. But I can't tell you how many people I've met --friends, business clients, random strangers who heard about my situation from some source-- who've told me how much inspiration and hope they've drawn from seeing and hearing about my struggle. Countless people have written, called, or told me in person that seeing my smile and hearing my laugh in view of what I've been through makes their own troubles easier to bear. They see hope and joy of life springing from a situation they can't even imagine living through.

I always wanted to do things and go places in an effort to help other people. To me, being stuck on the couch with brain fog so bad that at times I couldn't speak or understand what my family said to me was crushing. It made me feel so useless, so purposeless, such a waste of good oxygen. What good was I to the world if people who needed help were out there, while I was in here and unable to talk to, let alone help, them? It's been such a joy and such an encouragement to learn that I was helping, just in a different way than I had ever envisioned. And it helps to know that the pain and the frustration was not really for nothing...it's helped to change lives -- to change the world -- in its own small way.

Now as I step back out into the world, working and starting college, I bring the lessons I've learned from chronic illness with me. It was not the path I had intended for my life, but these four years have been anything but a waste.

So keep up the good fight, Laura. It's tough, but you'll make it. I hope your time at Stanford will be profitable.

Feel better,

Angela

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Dear Laura,

I have also experienced the same thoughts and feelings. I am in graduate school and know the stares and confused look people respond with. I try not to take it personally and accept that they cannot understand what I am going through, especially considering I look normal. I also get comments from my parents, similar to yours, and it just reinforces that others cannot understand what we are going through. Instead I live for an audience of One, knowing that God understands what I am experiencing.

It is so difficult for me to people do the things I cannot do anymore. However, I try to remember to share in other's joy. If I can't do the things I love, I'd at least like someone to be able to do them.

I live with the hope that I can get better at any moment. The doctors don't know if I will have this for the rest of my life, 25 years, or get over it quickly. And I chose to take the more positive look that this could end at any moment, that 10 years from now I may be cycling up a hill with my bedridden POTS years far behind me.

My prayers are with you as you go to Stanford. I hope it will be fruitful, providing you answers and a sense of hope.

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Hey Laura, I'm in college also...I have some classes on the top floor of a building and I refuse to take the elevator (even though I'm 'supposed to') because I don't want to look lazy, as I don't walk with a cane or anything. But by the time I reach the top of the stairs I look like I've just run a mile. It is frustrating...and as far as having to give up some old passions (cheerleading, colorguard, dance...) I try to focus on new passions (writing for the newspaper, being a poetry editor for the literary magazine). Anyway, know that you aren't alone in being frustrated, and send me a message sometime if you want to chat about the specific irritating things of POTS in college!

Meg

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Hi!

I wish you luck and understand some of the frustrations with people saying things like your father said and not understanding us. I also am in college in graduate school and that is a constant serious struggle. People can't understand why you can't do everything in a day that they can, and why your brain can be foggy etc. Lots of fun! :unsure::huh:<_<

I hope things are getting better! One day at a time!

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