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need some positive feedback


friday
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HI. I've been feeling very depressed lately because i can't seem to do anything anymore. I feel sick all of the time and hardly go outside. I try to, i just can't. I have a hard time just going to sit from one room to the other. I can't drive and most of the time can't even stand being in the car when someone else is driving. I'd just like to hear from some people who have experienced getting at least a little better. I want to believe I can have a life again. Even if it's not the same as it used to be. I have no family of my own. I mean husband or kids. I live with my Mom and Dad. They are both near 70 though and my Dad's a very negative person so I avoid him most of the time. I only get to see my brother once in a while. Other than that I don't have friends because when I got sick I only had aquaintances, not really friends, especially not friends I could lean on like i need to now. It's just hard because i want to go out and be with people but I get too sick. Nausea, too tired, etc,etc, and even the times when i finally make it out, most of the time, all i want to do is close my eyes and lay down. I've only tried a beta blocker, metropol. And I take lots of salt. So far that is not helping. I just need to know this can get better.

Friday

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i am so sorry friday, you are feeling this badly. i am going through a really rough time right now too, i believe this is the worst i've felt in a long time. i do have a supportive family unlike you, but i will tell you, that even with friends and family, this can be a very lonely disease process. no matter how much people want to understand, they really can't unless they've felt it. i have felt this badly before and have gotten to a better place. i am in physical therapy now and am hoping that will help with my strength. i don't drive either and am home alone all day. i have lost 50 pounds from nausea and stomach problems, and can't go in a car with wanting to hurl the whole time. so i do know how you feel. i just want to encourage you to do little things you can do, no matter how tiny or insignificant you think they are. you need to remember you did not ask for this burden. but for whatever reason you got it. so like all of us, have your very down days and vent, and then pick yourself up and believe it will get better, because it will. it doesn't always last, but it does happen. we have all been where you are and felt the way you do right now. unlike any family member or friend, we do understand. if it helps you to come here, then come a lot. someone will always be here for you. i also strongly recommend that if you are not seeing a therapist, you start. most of us do and it is nothing to be embarrassed about. i can't even count the times mine has helped me through some really rough times. hang in there and many hugs are coming your way!!! morgan

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Friday, hang in there!

I also wonder about getting better. I have good days and bad days, sometimes bad weeks sometimes a really, really good week. But my overall course has been downhill for the last 12 years and I recently stopped working.

I make myself do things somtimes during the bad days. Later, when I am resting in bed I am proud that I went to the mailbox or threw in a load of laundry or stuck dinner in the crock pot or walked to the barn to feed the horses. Any little accomplishment on those days is HUGE. I can honestly tell myself that "This day didn't totally suck, I made it to the mailbox". Habits are hard things to form but even harder to break. So I am determined to make the most of every day, whether it be good or bad. I resolve to look at the positive and see what I have, even it is only the mailbox. I recognize what I no longer have, but I do not focus on it. On bad days I am thankful that I no longer work outside the home so I have time to rest. We recently left a beautiful 2 story, 3000 sq. ft. home....but now my bedroom is in the middle of a 1600' single story. I am grateful that I don't have to work as hard to keep it clean and that even if I am in bed, I am now still in the midst of my family. Even though it once was my dream house, I am no longer stuck a whole floor away from the people I love. I am blessed with an understanding husband and a wonderful daughter, age 11. I know that this is the only life I am going to get and good or bad, it's up to me to make the most of it.

I wonder about how you are too sick to enjoy things. That is a hallmark of depression. Are you on an antidepressant? Have you discussed this with your doctor? Is he/she aware that an SSRI (selective seritonin reuptake inhibitor, like Prozac or Wellbutrin) can enhance cardiac therapy?

The place to start is with your doc. If he or she is not your advocate, find another one. We'll help you!

And lean on us!!!!!

Once your symptoms are under better control, that may give you some perspective on what it means to be "too sick" to enjoy outside activities. I think there is almost always a price tag attached to things we do......but, hey, 988 times out of 1000 I am going to pay the piper whether I "sit it out or dance". So I dance! Anything this side of chest pain and bronchospasm is fine with me! Nausea? That's what bread, crackers and hard candies are for! (Or an early dose of ProAmitine -bad, bad, self-medicating patient!) Fatigue? Diet Pepsi, fresh brewed iced tea or a nice big cafe mocha. Tachy from the caffeine? Try splitting your beta blocker doses in half and taking them 4x a day instead of 2 (MAKE SURE you do this with your docs' knowlege and official okey dokey.)

Good luck!

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It does get better for some people and/or we slowly learn to compensate and live with it.

It's hard to make new friends or keep the old ones and the ones we have are real friends. Like Morgan and Herdswoman said we are part of your social life.

I spend most of my days watching TV and playing with my puzzles. This keeps my mind away from negative thoughts. I try to do one activity per day, ie go to the doctor, physio, clean the washroom, exercise. I go out on one day and the next I need to recuperate. I usually go out for 2-3 hours. When I feel too presyncopal I have to cancel everything (which means the only thing I do during the day). My doctors and other caregivers are aware that I cancel only when I know I will faint in public so they are very understanding. They prefer that I stay home than having to pick me up and care for me!

I also think that having a psychologist or psychotherapist is helpful. Among other thing, they can help with dealing with a chronic illness.

Ernie

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Thanks for the replies. I do have a therapist and psychiatrist so I'm okay on that end. My therapist is wonderful she even discounts her rate for me because she knows i can't afford it. I'm on antidepressants already. Zoloft and Anafranil. I really do know the difference between what I feel physicaly and mentally because i went through a long depression as a teenager/young adult ,years in fact. ANd I know this is definately not depression. I do get depressed because of the things i can't do but i want to . When you're depressed you really don't have any ambition and no feeling for anything. What I feel now is so different. I want to do things so bad, have all these things i'd love to do and as soon as I feel a little well I do. I'm an artist so I work on that when i can. I also have hobbies, I've started writing lately. What gets me down is when I'm too tired to keep my eyes open, or when they are so irritated I can't work on my art, etc. Or a lot of the time I'm nauseated, and it prevetns me from doing a lot. ANnyway, I was hoping maybe some people here might have some stories of hope. You know, like they were in bed but after receiving treatment, they feel at least a little better.

Thanks again for the support.Sorry for the typo's but i'm too out of it sometimes to type correctly..plus i was never the greatest typist. They don't have spell check on here do they?

Anyway,thanks,

Friday.

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Friday,

I have had POTS for more than 25 years now. I have been just as bad as you describe at times and some of those times were prolonged. However, I have

had good periods, too. Over time, I have worked out several things that have helped and now I stay on a much more even keel. So to answer your one concern, yes, it is possible to achieve a better level of functioning, one that may not approach your pre-illness level of activity, but one that can have a good quality of life. And that quality of life can include true friends.

The hard part is that you have to make it happen. Because doctors in general know so little about POTS and dysautonomia, and because we often appear to others as complainers and lazy, the only thing that will get you functioning better is your own initiative.

Get a doc that understands dysautonomia--most likely an electrophysiologist-cardiologist and also a primary care doctor that will work with the specialist. If your medical care isn't what it needs to be right now, make a change. A doc who understands dysautonomia can help you find meds that help.

I have multiple chemical senstivities and allergies, so trying meds is extremely difficult for me, however I have managed to find the best beta blocker for me and rule out other things that don't help. think it takes a lot of patience to get through trying things.

I refer once in a while to the DINET "What Helps" section.

Here is what I have found so far that helps keep me functional:

beta bocker (very low dose)

extra salt on my food

regular exercise (Again it has been trial and error to find out the right kind and amout)

acupuncture

cranial sacral therapy

good friends (being social helps a lot to keep you from feeling isolated)

creative work (I have a freelance writing and edition business and I am starting a new business also--all from my chair at home)

lots of rest

The list of things I have tried that do not help is much longer than the list of things that do help. However the more things I investigate, the longer my list of helpful things grows! Again read that "What Helps" message for ideas.

It must be difficult living with your parents, especially as they are aging and will have their own health concerns and issues. You need friends, TRUE ones. You have already started in that direction by posting here. It is good to have you "hanging" with us. Later on, as you find more things that help you and you begin to function a bit better, you can reach out more and make friends beyond the POTS circle. People who would like to know you and treasure you because of who you are (and who you are includes your illness) are out there. As soon as you can function at all, go out there and find them. About 15 years ago, I dumped everyone who wasn't a TRUE friend and that left almost no one, however now I have several wonderful girlfriends who are fabulous people to have in my life.

It is wonderful that you are a writer and an artist. As a writer, I understand what it is to have to write something and my brain is just so fogged over I can't think well. Somehow I manage to do it anyway. Many times, I haven't been able to work because of some med I was trying or just because symptoms got so bad. I have tried to develop patience to get me through those times. I am not always good at having patience.

By the way, do you do realistic illustrating? Are you interested in doing realistic illustrating? If so, send me an email to me at writeplace@comcast.net. I will be needing artists for my new venture.

The best to you

Michigan Jan

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Hi Friday,

I was bedridden for 2 years before I first got my diagnosis. During those 2 years the doctors thought I was making myself sick or I was malingering. I only got relief after seeing Dr Grubb and Dr Goldstein. Before I got my meds I would faint every time I stood (and I am not even exagerating!). This means about 10 times a day. I kept hurting my head, my knees and my back. I had constant diarrhea and GI spasm. I had brain fog all the time and could not think straight. I had adrenaline rushes even in my sleep as I would wake up in tremors, all wet and pass out going to the washroom. I had many other symptoms that I don't even want to remember. I felt like I was in ****.

Now with my meds I faint about 1-2 a week.

I went to see my cardiologist a few weeks ago and he told me that there is no cure for ME and that his only goal for me is to keep the syncope as low as possible to avoid hurting myself. He told me I will never go back to work. He also said he had never seen someone as sick as me and I am the benchmark for the other patients. He also added that there is no research done at my adrenaline level so they don't even know how it affects my body functions and my life. I have been told the same thing at NIH!

I hope that this message is encouraging because that is my intention. I find it very difficult to write about the 2 years I was bedridden so if ever I end up hurting you or anyone else I am sorry. I don't mean it this way.

Ernie

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Yes, you absolutely CAN get better. Been there, done that.

I've been dysautonomic all my life, with it coming and going in waves. For the past 15+ years, it has been a constant part of my life; it's never really gone, it still comes in waves of getting worse and actually feeling pretty good, but my bad days now are better than my good days used to be.

I'm not one who is willing to just accept this sentence of "learn to live with it" or "take this drug and that drug and then another and another." I have fought hard, done tons of research, tried a huge number of different therapies and products and wasted a ton of money. About 3 years ago I was at my worst, just shy of bedridden, and I don't know how on earth I kept pushing myself to keep going. I don't think I could do it again.

But what I have found is that I am the only one who can make me better. Yes, I needed plenty of help from all the "experts" I've come into contact with - even the horrid ones (way too many of those!) taught me something. But I'm the one who had to put the pieces together, throw them out when they didn't work, and start over again and again.

What I have learned is that dysautonomic symptoms are due to a chemical imbalance in your body. You will never get help from a doctor unless it is an extremely rare one who embraces alternative methods, vitamins & minerals and everything related to nutrition, and lots of research. I haven't found one yet. But completely changing the way I eat, taking only the best quality supplements, no longer listening to or depending on doctors, and making almost a hobby of trying "unusual" therapies has paid off in a HUGE way.

Probably THE most significant thing I've done to effect a positive change has been enrolling in the Metabolic Typing Program and working hard at it. (I oughtta get a commission - I brag on that program every chance I get, because I honestly believe that is what brought me back to life again!)

Today, I am no longer unable or afraid to make plans and pursue dreams. I work a full-time job plus 2 part-time jobs, I perform as a pianist and sometimes even play my harp in public (I'm just a beginner on that instrument). There are some things I will never be able to do again (the hardest to accept has been losing my ability to sing!). But I move forward and find other things to do instead, or ways to adapt and compromise, or (strange as it may sound) even benefits to not doing those things.

Yes, you can get better. But it has to be because of your own determination. For some people it's just easier to remain sick (NO I'm not referring to you or anyone in particular - I just know that it's true for some). For me, that's not an option. God made me stubborn for a reason!

Get mad and let that anger propel you toward research and a willingness to try just about anything so you can prove "them" wrong. I'll say it again: Yes, you CAN get better!

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