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How do you do it? How do you keep yourself in a positive frame of mind? After 10 years of this, I am tired of being exhausted every single day. I am bored to death. I can't find anything to do that I can focus on long enough to accomplish. I have seen counselors, who don't really seem to understand and their advice of be happy for the little you can do, just doesn't work for me. No matter how hard i try, telling myself to be happy when I feel well enough to go sit on the porch, just doesn't cut it. Although I have no intent or desire to ever try and harm myself, I would be ok with getting sick and being gone in the near future. How do all of you keep yourself happy, sane and wanting to keep living like this?

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I felt that way for a while. Praying at night that the Lord could just take me home so I didn't have to live like this anymore. I think it's normal. I have only been dealing with this for a little bit, so I can't imagine how it would be long-term.

What I did was invest my time into other people. I was a mentor for 5 girls last year dealing with incredibly hard things and it was easier to put my life in perspective. This year I can't go to school, so in trying to find things to do is an interesting process.

Have you thought about rocking babies at a children's hospital? You get to sit down and it makes an incredible difference. Or finding a program with a elderly person's home to just sit and talk with them for an hour? If you are home bound, there are people who can come to you... mothers with children with special needs who need a break, people who would love a one-on-one mentor relationship...

That's all I got for now! Sorry if it doesn't help.

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Well, to be quite honest and frank the answer to your question is I haven't found a way to be happy and sane with POTS. I hate that answer, but it is true. I don't know if I will ever be content with living my life this way. I still grasp on to a possible recovery as it's been about 18 months for me and only 4 months since diagnoses. I just told my husband eariler that quote "i'm running out of steam". I think the hardest part is people really have no clue! No clue that today I crawled on all fours up my staircase crying my eyes out because my heartrate was 130 and I couldn't breathe or stand the chest pain.

I look at other moms taking there kids to preschool and watching them push their babies in swings and it is just more than my soul can handle. My daughter is 3 and I've been sick for 18 months...do the math. I watch people walk in and out of Target pushing buggies and talking at the same time and wonder how it got to the point where that simple human act looked so far fetched and painful. Over it. Period.

Sorry this is not all rainbows and roses, but sometimes I just like to hear raw feelings. And to know I'm not the only one struggling and overwhelmed with the width and depth of this condition. Now tomorrow I may feel completely different, but today is a hard day for me as well. I guess knowing that even though no one else sees or seems to care, not one tear I have shed has gone unnoticed by my God and that He can handle my anger, grief etc. That is about all I can grasp onto on days like this.

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I still don't know that this is real-so while I have my times where I have negative emotions and question it all I still try to do what I can and be thankful for that.

I am learning that if I feel bad I need to just stop and do things when I am feeling better and not try to push through really bad feelings.

I do well when I get engrossed in things and totally forget about POTS.

I seem to almost be asymptomatic then-if that's at all possible.

That is what I would recommend lose yourself in something either something you enjoy doing by yourself or with others and spend as much time in that mode as possible.

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To keep good mental health I do a combination of things.

Meditate.

Pray.

Share with friends or family who are able to listen and share.

Come here and share.

Allow time to feel the loss

Allow time to sit quietly and allow for the saddness to work through.

Don't deny my feelings, embrace them, examine them turn them inside out and upside down and when I am ready allow myself to figure out what it is going to take to let go or adjust and take one tiny step ahead again.

We have such a resource (spiritual light and energy) inside our own being (soul) and to go there, reach for it and hold onto it is very positive, healthy and healing.

Streaming you healing thoughts and love.

tearose

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I see a therapist to vent. She sees many chronic illness patients and I just can't unload it all on my family; they already worry enough.

Before my official dx, I was told it was a pituitary tumor, Parkinson's, Mitral Valve Prolapse, bi-polar disorder, and on and on. I would research each one and explore my options until the test results came in negative. After my POTS dx, I did the same, which led me here. Now, it takes a good deal more for me to worry. The doctors have to prove to me that I have whatever first, they usually can't. I spent several years looking at other mothers, wondering: "How do they do it? Why is it so easy for them and not me?" I spent a lot of my life wondering why I couldn't get to sleep at night, why I couldn't get up at the right time, why bright lights gave me such headaches, why I couldn't run like the rest of the kids.....

I finally realized that there was only one thing I DID have control over, my own attitude. I can really only do two things: breathe and adjust my thinking. Some days it just doesn't work and things stink, some days are better. The hardest part is forgiving myself for what I cannot do.

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It's been over a year now since I started blacking out and spent 22 days in the hospital being diagnosed. The longest I can spend out of bed now is about 10 minutes at a time. I'm thankful I can sit at the table to eat now, walk around my house to the living room recliner, take my dogs out, go to the bathroom on my own. Thankful, because I couldn't do these things a year ago.

Years ago I had a friend at work who was diagnosed with Hodgkins lymphoma. He was very upset and spoke of suicide. One day, he was sent up on the roof to change the parking lot lightbulbs. I was told he was up there for a long time, so I went up to see him. He was sitting on the edge, so I went over and sat with him. I said what are you doing. He told me in tears that he wanted to jump off, but was trying to figure how to land so that he died, he didn't want to just break some bones or be paralyzed and be worse. I said, you mean you could be worse than you are now? You're telling me that people are paralyzed and fighting for their lives? And you're better than them and want to throw it away?

I think it's called tough love, but I tried to get him to understand that you have to make the best of your situation, and it worked and he's still one of my best friends. He has beaten Hodgkins, married and had a beautiful baby daughter this year.

So that brings us to today, somedays I feel I have nothing to contribute to this world anymore, I'm a burden on my family, and I can't get out of my own way. But life is too precious to take lightly.

Suicide is forever, you're not just throwing away today, you're throwing away the rest of your life. You're going to miss a lot of good times, good days and good people who deserve to still have YOU in their life.

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I always try to find the blessing in every situation and crisis. And even if it might seem at first if there is none, it always turns out that there is one. Before i was sick, i took things for granted. I just got up, walked wherever i wanted. I did my sports, went on marathons and besides my full time job, i also was an aerobic instructor in the evenings. Now since iam not able to do these things anymore i look back and am thankfull that at least i once experienced these things. The memories are inside of me, i can remember them clearly, i can feel them i can even "smell" them sometimes. In my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. Having this illness tought me to be thankfull for the little things in life. I get excited about silly little things now, now i appreciate situations that before i wasnt even aware of. I try to learn as much as i can out of suffering with POTS, just as if i was researching this illness in every subject to learn and help other people with my experience.

I believe this illness was given to me to teach me many things. Iam looking forward to the future and wonder if my destiny is to be healed. When and if i become healed, i will use this experience to help others who are struggling through illness.

My way of dealing with POTS didnt just happen over night either. It took many years of not knowing what was wrong with me, fighting it, and all the rest of it. Learning Is always a process. Its important to let all your feelings out, its ok to cry to even scream thats all part of dealing with this. I wish you all the best and please try to find the blessings in your current situation.

A big hug from carinara

BTW: the teachings of Eckhart Tolle, Byron Katie, Louise Hay and more...helped me a lot:-)

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Thanks so much everyone. I'm glad to know that I am not the only one out there with these feelings. I am going to use the suggestion of going to sit and talk with people in nursing homes. I am not much of a baby person :) but I love talking with the older folks, some of their stories are fascinating. I'll just keep plugging along, and maybe someday they will come up with a surefire fix for all of us.

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Thanks so much everyone. I'm glad to know that I am not the only one out there with these feelings. I am going to use the suggestion of going to sit and talk with people in nursing homes. I am not much of a baby person :) but I love talking with the older folks, some of their stories are fascinating. I'll just keep plugging along, and maybe someday they will come up with a surefire fix for all of us.

So much beauty & wisdom here.... I just had to comment on the wealth & breadth of information shared. Mandasmom, what a wonderful thing to do- spending time with those closing in on the finish line. Everyone has a story to tell and so many of them have few visitors at the end. Consider writing down their stories, doing character sketches. Each of God's children are perfect & beautiful and deserve to be celebrated. You will be a comfort to them and recording their life experiences may turn into an avocation that many of us could learn from.

ByteMe58, what a powerful story. You are a hero in every sense of the world. So wonderful that your friend was saved and went on to have a beautiful life. None of us know what tomorrow will bring. His story illustrates that. So many here have lost control over so much of their life, but as Jennifer points out we always have the ULTIMATE control- our reaction to whatever life dishes out. Carinara's reminisces brought tears to me eyes. It takes such wisdom and perspective to be thankful for what you once had rather than be bitter you no longer do.

Folks, you never cease to bring me to my knees. I wasn't feeling desperate (today at least :rolleyes: ), but you've inspired me nonetheless. Thanks for being here.

Mandasmom, I look forward to reading your reflections on my kindle :D . Don't disappoint me.

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How do you do it? How do you keep yourself in a positive frame of mind? After 10 years of this, I am tired of being exhausted every single day. I am bored to death. I can't find anything to do that I can focus on long enough to accomplish. I have seen counselors, who don't really seem to understand and their advice of be happy for the little you can do, just doesn't work for me. No matter how hard i try, telling myself to be happy when I feel well enough to go sit on the porch, just doesn't cut it. Although I have no intent or desire to ever try and harm myself, I would be ok with getting sick and being gone in the near future. How do all of you keep yourself happy, sane and wanting to keep living like this?

I am so sorry to hear that you are having a hard time.

I went through a period where I was incapable of focusing on anything, and while it was the worst experience of my life.

All I can give you, as far practical advice, is:

1 try to change your scene. Anything that can get your mind off of yourself and how you feel will make you feel better. If you can go out and interact with people, in any capacity that is the best thing to do.

2 Try to replace agonizing over your situation by documenting it. this will help in two ways because writing down how you feel is cathartic, and documenting the waxing and waning of your symptoms can yield insight into avenues of control over your symptoms.

3 Don't think that your current state is fixed because it is probably not. Dysautonomias wax and wane over time. I am doing much better now (although it is hard to ever notice that one is doing better, because we tend to increase our work/stress load to match our capacity for work/stress so we are always pushing the envelope.) I really wanted to die at times when I was feeling bad because it was so hard to think about anything else other than how I couldn't think about anything.

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