I know this is a sensitive issue, but related to our problem. I have the norepinephrine problem associated with the POTS. Anyway, it seems all this happened after 2 traumatic events. Funny, I am a psychologist, but as a prof, I do research and stats mostly. I loved it. Now, I wonder if I will ever publish again. Work has been horrible to this ex-golden girl. I think my family forgot I need help. And, my social life is a long interesting story. Anyway, as soon as I heard that stress is bad for the ANS, I went for help...even voodoo therapy (as I used to call it). Nothing helps, except some Buddhist concepts. Not therapy, not friends, not drugs..nothing. Oh, I guess there is one thing...this hot guy I hang out with, but that situation is complicated (and I just go with the flow, since he accepts me like a goddess), and it is the only time I feel some joy..oh, also when my nephews hug me. I seem to need a lot more affection now, but feel very isolated most of the time, and unable to concentrate on a job I once loved, and now is so hard on me. Will I ever be happy again? Do you all feel sad too? I am so tired of this whole thing.

Maybe you will--IF you want to be.

I too have high Ne levels and dys. It burns you out mentally and physically--esp vitamin D--and lack of sleep just makes it all worse.

I DO get where you are--I was there too--but it's been 2 years for me now--so I've had time to face it.

Wish I'd done it sooner. I wasted TONS of time I won't get back again trying to deny it and looking for a magic wand that isn't there.

Replacing vitamin d DOES help mood--and immune system as well. Excercise helps bring NE levels down so --maybe--you'll get another hour or so at night.

Look in the mirror. REALLY look. Is this someone YOU'd want to be around?

If not, start looking for ways to make it better. This list has SEVERAL answers that help--start trying them. The sooner you face the facts the sooner you'll feel better.

I'll bet you one thing, g'freind. It won't get better until YOU start down the road to MAKE it get better.

Have you got a bottle of water in your hand? <chuckles>

PM me if you want--I'll share a phone number. We'll talk--we'll laugh--and I'll help you. I too am up at this ungodly hour so you don't have to be alone.

But it's up to you to decide.

I spend a lot of time unhappy and depressed about this 'junk.' As we all know dysautonomia is not something we can walk away from. We have to learn to live with it.

I'm going through a hard time at the moment emotionally. Not much fun to be around. I think depression is very often caused by our lives not turning out like we thought they would. I wish someone had told me when I was young that none of us will ever experience the life we plan and hope for.

Even when we reach goals we've been striving for years to complete our lives never look like we thought they would nor do we feel like we anticipated we would feel.

This applies to people in good health too. Except it's so much harder when our health is up the creek.

I understand the loneliness Nesh. I wish someone would just give me a good comforting hug every now and then. Loving physical touching is so important and I'm not just talking S E X. I crave being held now. It's not like we can go to a support group for this stuff either. And as much as I rely on this site for support and understanding I would so much rather have you all here in person.

Nesh. . . I don't think any of us can look in the mirror now and see the person we want to see. Let's face it, life has changed for us.

What can we do? Accept it. Hard to do! I will suggest though, that you just take it one day at a time. If it's a good day, enjoy it! Don't try to overdo it. Realize your limitations and live within your capabilities on any given day.

Every day, I try to put my makeup on and get my bed made. Beyond that, it's just moment by moment. If I've put my makeup on, then I can go out if I'm feeling well enough without having to tire myself out just to be presentable. And if my bed is made, then I can wash my clothes or unload the dishwasher, because my bed's already been made and now I feel like doing a little more.

But if you don't FEEL like doing anything, then that's okay. Just simply do what you feel like doing a little at a time. I've read your posts and I know you do push yourself to get to work and that you have to have help in the mornings. Give yourself credit for finding a way to accomplish what you do! And keep just putting one foot in front of the other, one step, and one day at a time.

And don't every feel bad about having negative feelings and thoughts from time to time. That's what we're here for!

Thanks everyone

blue, did u get this saying from me? I say it all the time:
_____________________________________________
Even when we reach goals we've been striving for years to complete our lives never look like we thought they would nor do we feel like we anticipated we would feel.
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Nothing works. I have tried over the past two years to seek the best docs. It seems hopeless.

People sounded like reached acceptance, I find it hard to believe, and frankluy i am the person I want to be minus the POTS. I amd, that is all I have and I better love it.

The point is I cannot live my life. I tried and tried. it'd hopeless. I was in better shape emotionally last year, but I did't knoe a year later of docs on my case, and it would be no beetter, if not worse. I CANNOT keep ip with the wo;d, which generaly rather unforgiving of limitations, Two years after therapy (I insisted on doin) and have gone has far as I can with this talented therapist, but darnit, O tape the sessons and repeat the exact same things, and I need help physicallly and emotionallly. I the honest truth we cannpt admit id this is our lives now, Yes, i at trie to help/ Theres sems to be no ome who can help me,and need some scraps. I NEED HEP. mahbe u cn accept the totally unacceptle. I need something so that I escape. I am in despair.

I think we all can relate to how you are feeling Neshema - it seems to just never end - one thing after another. Remember that acceptance doesn't mean you stop fighting for answers or lose hope that things will get better. I was (and still am at times) like you and kept fighting my diagnosis and refused to accept that I had something chronic that no one could fix. With all the technology and Drs. out there, how can there not be something that will give me my life back???? It wasn't until I accepted my diagnosis that I was able to change my perception. I have no choice but to accept the cards I've been dealt. Do I like it? No (even Jesus Christ didn't like the cards he was dealt - he asked God to take that cup from him - he didn't want to die in agony) but I couldn't keep pretending it didn't exist. I know it's not easy at all and I'm not implying it is. I have been exactly where you are now - feeling like I have no purpose and like I have nothing to look forward to. I had to stop driving, teaching, and some days cannot even cook a meal for my family. I had a choice to give up and stay in my room all day (which made me feel worse) or try to move forward. I choose to move forward. Neshema, I started noticing all the little things that I was missing in the busyness of my life before. I never noticed the birds singing, how the sun felt on my face (I know it sounds cliche but it's true). I never really noticed the leaves changing on the trees during the process - I would just all of a sudden say, Oh, the leaves are colored now. I had stopped noticing the beauty of my children because I was so busy running them and me all around. I had stopped noticing the sound of their laugh and the dimples on their faces when they smiled. I know all of this sounds cliche but try to start feeling joy in the little things around you and take pride in the small things your accomplish. I know in the scheme of things they may seem trivial to you at first and nothing like what you used to do but you know what? They matter - and so do you. So much. Am I anywhere near having my old life back? No, but I am learning (slowly and sometimes kicking and screaming the whole way) to forge a new one.....
You used the word despair at the end of your post. That is a horrible way to feel. Please don't give up on your counselor and if you're not happy with her, try another. Make sure you're honest with them about how deep your feelings are. We are all here for you. I am available anytime and will be praying that you can start to find happy moments amid your pain.
Take care..

Well,

I am new here, new to realizing that it is Dysautonomia, not new to the symptoms that appear to be progressing.

I do not have POTS (don't pass out) but live in AZ and cannot go out in the heat. Still dizzy from last Saturday, I am realizing that I am housebound until October? (Wow, bummed just typing it.)

HOWEVER, I like your Buddist ideas. I am just 3/4 of the way through a great book "A New Earth" by Eckhart Tolle.

It talks a lot about ego vs. just being. About Buddha and Jesus and other spirtual leaders were all alike (enlightened).

It also has great stories and information about acceptance, non-resistance and non-judgement. One of the stories was so good, the ring made for the king in the story had inscribed "This too shall pass" - My husband said he wanted to make us matching rings to remind us to live for the moment and "just be".

Also great story about Stephen Hawking (sp?). You know, that genius guy, that has had every muscle in his body freeze up and has a controlled wheelchair and computer that talks for him through a voice synthesizer?

The author saw him in the late 70's. People had to feed him, he permanently slumped forward, people needed to lean in just to hear the croaking sounds he was making to figure out what he wanted.

Later that year, an article came out on him and when commenting on his life, he said "Who could have wished for more?"

It is in a section called Going Beyond Limitation.

This book is so great, it is helping me be happier than I ever have been, and helping me deal with adversity.

I have brought several for friends and intend on buying another so that my husband has his own. That way I can keep reading my own over and over and he has his.

So forever, in this world with regard to happiness I am always the student - seeking to master.

Keep up the hope!!

Hi Nesh,

I replied to your post here yesterday but lost it and I was too tired to write it again.

Probably just as well. I was having what Jessica Lange said to Sissy Spachek in "Crimes of the Heart" something like "it was a bad day is all, a real bad day." Also, my bad days have been running into each other lately and I hardly ever get to see a break in this pots junk.

I am so p*ssed off with myself, with my doctors, with my partners, with my mother who rings me nearly every morning ( or just makes me have to get up off my butt to answer the phone at a time when I need to be sitting with mmy feet up) and usually wakes me up when I've told her not to ring me in the morning (and who is absolutely satisfied when she has bad news to pass on -- like I need bad news).This list of what I was p8ssed off with goes on and on. I was pretty much pissed off with the whole damn world and I was top of the list.

I had had a terrible night the night before. My husband had said something nasty to me before going to the spare bedroom and locking himself in there for the night. It had shaken me up and left me despairing but I finally got to sleep around midnight only to wake an hour or two later feeling like I was going to die from pots symptoms (but unlike when I usually wake like this I got very agitated. Usually, I'll just lie there quite calm and think "well if I'm gonna die, just die." But this time I was very agitated about that 'dying feeling.' Anyway, I got back to sleep and woke again another hour or two later with a migraine from hell and wished to hell I would die. I finally got it down to a lower level of pain by taking some med that makes me feel like hell. Am also taking prednisone (which also makes me feel like hell) and a whole host of anti-histamines (H1 and H2 antagonists) for my flaring, red, itchy, rash that's all over my body. Not to mention other stuff. You all know about it.

I could not lie down again because I knew the migraine would come back in full force so I forced myself to get up and spent the day sitting in a comfortable chair posting here, searching the net for answers and only finding info I could not even begin to get my head around and then started doing some food shopping online and had completed the process, got to check out stage and lost the whole thing. I wouldn't answer my phone -- I didn't want to talk to or hear from anyone.

I felt like hell. And angry and despairing about it into the bargain.

Last night I finally got to sleep about midnight and slept till 11am and apart from burning feet and migraine at a level 4 (I can handle that) and itching skin, and just feeling crappy from meds, today I feel a bit better about myself.

I have one thing to celebrate. My sense of smell returned last night. It comes and goes and no-one has been able to explain this to me. I either can't smell a thing or my sense of smell is heightened. Most of the time my sense of smell is AWOL but sometimes it turns itself back on and I don't know whether it's that it's extremely senistive when it's on or if I'm just noticing smells more intensely because most of the time I can't smell. I realized how bad my farts have come to stink. LOL.That the clothes dryer is 'burning' rather than drying the clothes (i could smell it) and at the moment I can smell a beautiful musky smell like those pink musk sticks we used to eat as a child. I think that's coming from the cleaning crew who are at the moment cleaning the hall just outside my front door.

So, today I have one thing to be truly thankful for -- I can smell stuff. At least for the moment.

Yesterday the impending arrival of a new grandson (now one day overdue) couldn't even raise a smile in me. Today I feel more positive about it. It was frightening to me how the pending birth of a grandchild was leaving me feeling numb. At least now I feel some sense of anticipation.

Oh and my husband came home yesterday evening and apologised for what he had said to me the night before. I was slack-jawed with surprise at his apology. He hasn't said sorry to me in years.

By nightime my mood was starting to turn.

So, yesterday I could not find one thing to feel good about. By evening I was feeling a little better. Today I feel a bit better. It's a bloody roller-coaster ride. I can't say I'm jumping for joy here. But compared to yesterday I'm doing much better.

But I know Nesh, how it feels to feel 'what's the point.' I can go there regularly to that feeling place. Once in my life I was there for 12 months. This forum is good for helping each other but don't give up on the therapy. If this guy is not helping you find someone else who does. Preferably one you can have a laugh with. Sometimes I have to pay good money for a laugh. LOL. I keep visiting my psych because sometimes I'm going through a really bad patch and I need to talk about it with someone and apart from the people on this site the only person I can talk about it with is someone who I pay to sit and listen to me.

Having written all that, if my symptoms get one degree more nasty today I'm pretty sure I'm gonna feel like I did yesterday. I'm really walking a tight-rope of emotion here.

Wow, everyone U all care so much. I am finally drifting to sleep. Blue, U said what I knew when I wrote on the other thread. It's okay. I am here for u too.

AZ- ur in my favorite state! MY doc didn't want me to go there for my uncle's funeral cuz of the heat. Yeah, PM me with books. We can share!! I always pick up Tolle at the bookstore and dont buy it. I agree about the connection between these spiritual leaders. Check out anything by Pema Chodron and Viktor Frankl "Man's search for meaning." Incredible. U mention Hawking, mine person is Chris Reeve. I met him. I followed his and Dana's story and was crushed when, after everything, he suddenly died. He and M. G. Fox, Helen Keller among others inspire me. Which is your favorite Tolle book? Please PM or write here. I would love to exchange book lists with you.

Treble, I so hear u about the gift of noticing what is in front u. IN that way POTS was a great gift. One day I was in my 20s and then woke up in my 40s. No, it is not trivial at all.

Mollie_ so relate. PM me anytime. U hit the nail on the head.

Rosie_ I don't get why I havent had a sleep study either.

Oh, Sandi, If u only knew how I have tried. My docs can tell u. They said I was the pots poster child, and I said okay I will be the model of recovery then. I grew up with arthritis made state bench press champ. I do like me. I just hate POTS. U tell me realistically how to MAKE it better? The Vit D has helped, but I like who I see in the mirror. I am a survivor and I have done so much in my life outside of POTS, and so much to help myself. I am not a quitter or a person with inheritently low self esteem. I have tried for 2 yrs, and never did I imagine when I got my dx, two years later, EVERYTHING would be a struggle. I even pay thousands to caretakers to get me to work. I am a psych who thinks therapy is voodoo and found one who changed my life, even when the other docs thought I didnt need him. Anyone with messed up neurotransmitters needs all the helo they can get just to cope with what is.

Blue- I am proud of u for being open and honest and feeling ur feelings and sharing it in a safe place. U GET IT, and I do have hope for brighter days for u, regardless of POTS. Hey, pretty wacky, but my sense of smell stinks (funny, but true) except I smell the awful state of my GI system. YUK. Nasty, huh? HAHA!! Why does that make us laugh like immature children? "Ur never to old to be immature." I am sure now "carefree" in the moment, noticing what's in front of me is the meaning of life, cuz all we have is now. You are right, night often is not good for the mood, but keep track of ur triggers. Remember we have problems with stress hormones, and let people know ur boundaries. I have a rule u might like that I learned from my parents married over 50 years in a fairy tale: Never go to bed angry with ur loved one, especially. Maybe work on that with hubby. ONe thing I have made clear to my inner circle is what I can and won't take. No yelling, swearing, snappy grumpiness, neglect, etc. It's the golden rule. I no longer can take that stuff. At first, they were put off, but eventually it resulted in bringing us all closer together. Most normal people are happier being kind to others, ahd experiencing peaceful, calm, loving, non-confrontational relationships where we treat each other with respect snd the quirks are outweighed by the love..and that means no abuse, verbal, neglectful, pouting, blaming or physical. Sometimes u gotta let people know ur limits and keep from moving ur line in the sand. I never heard my parent EVER swear or scream. That is why I can't find Mr. Right. I won't settle. POTS is bad enough. So Blue, I encourage u tol, if possible, find a relaxing time to have a calm, lovinh boundry talk. If u do, lemme know how it goes. U JUST CANNOT DO STRESS. WE CAN'T. We WILL GET SICKER. Blue, uae what makes sense and forget the rest. U rock! You all rock. The vit D is helpine more than anything!! maybe there is hope. Just takes a LOT of patience, but u already know.

HUGS TO YOU ALL, WHAT STRENGTH WE HAVE EVEN WHEN IT SEEMS HOPELESS. READ FRANKL 6.99 at Borders. Required reading in my psych grad program. It's a quick read worth reading over and over. A true story by a famous psych who watched from a psych perspective those who lost everything possible choose to survive or quit. I hope it will help someone here. Believe me, he had it so much worse than I do.

AGAIN, HUGS!!!! Love and respect u all. THank you..

Sorry about all the ditzy typos, but i never went to bed and when that is the case, I type like a drunk person! Does this thing have spell check?

Neshema. I've posted on this website with the same [problem. I feel badly for you - I know how hard it is, as do many of the people who post on this forum.

I don't think there is a quick fix - although if you find one will you let us all know? - I think one has to try to find the good in each day. I find distraction to be the best thing on a bad day. A good fiction book - something totally engrossing - can make all the difference. Or a movie. I have 3 young children and they are a HUGE distraction for me although they can also be a source of frustration especially when they are being difficult.

I know it sounds simplistic but I live for the moment when I crawl into bed at the end of the day or during the day when my 3-year-old is napping and I lie down with my book. Sometimes too much thinking just makes things worse.

I am very goal-oriented and if you are the same, making a small list of the things you were able to accomplish each day may help. For me, I feel good when I pay the bills, make a meal, or spend some quality time with my family. It's wicked hard, especially if you are a professional with a long list of lofty accomplishments, but it's absolutely necessary to step back and feel good about what you can do.

Also, not to sound cliche but there are days I am just thankful I'm not dying, or that I'm not homeless, that I have a family to love.

Hang in there. Find a good book to read! Do you like Dan Brown? I have read all of his books and he is brilliant! If you like, I'll send them all to you...

A big hug to you,
Heidi

You are not the only one that feels bad, as you can see by all the replies. I've noticed that most of the time, I'm feeling physically too sick to even think about feeling bad/sad about how sick I am, but when I am feeling "up" and am coherant enough to realize how I've lost touch with many important people in my life and miss meeting new people, it is hard. Mostly I feel like I'm in a dream world - out of touch so it doesn't bother too much, but if I ever get to a point where I'm well enough to want to get out and about, I know how you must feel at that level of function with this illness.
Take care

Have any of you had trouble with your spouse, because of lack (or should I say "NO") sexual desire. My husband and I have been separated for almost three years plus I've been caregiver for my parents (Dad passed away a year ago) and Mom has alzheimers and heart disease. I've been trying to work also to support myself. I love my Mom, she's always been great and I want her life to be as good as possible to the end. I don't mind taking care of her, but I'm just plain EXHAUSTED. All I do is go to work and go back to Mom's, and once in a while go home to sleep a night or two and do a load of laundry. I always feel tired, depressed, numb and sometimes feel like I have a thinking problem. I have the hyperadrenergenic form of POTS and take Inderal every 6 hours. I thank God that He's given me the strength to do what I've done, but I'm feeling very, very tired.

I hear ya. I hear ya. I reread this thread like it was for the first time. That is how bad my memory is...I have no recollection of this. Blue, as I said u rock. U have the courage to be "in the moment" and face ur feelings. I love what I see in the mirror. Sorry to sound narcissistic. but that aint the issue. I grew up with arthritis and became a state weight lifting champ. I don't give up even when it is hopeless, and yeah, to the person who asked if I would want to be around me. I sure would. I am compassionate, have empathy, am giving. funny (even though I can admit that life is a more of a struggle than I ever imagined). I am glad for the person who can make the bed. When I make the bed, my tachy goes sky high. So, because I want to get out of bed, live life, and have fun, but it's been a little hard to do, I keep working, finding accommodations, get help, try anything, and don't give up. Yes, acceptance of something unacceptable is always good. It is great to reframe something and see it differently. My post came after my brother stopped talking to me (that's his MO with everyone, but we were finally getting close..should have known better) because he was tired of my demented symptoms. Well, he has a short fuse. It is a bit hard to go from professor to shower chair and not being able to find anything. Hard to go from just having arthritis and being on big gun drugs for that to something that is worse for me. WHY? Because arthritis didn't keep me from doing what I wanted most...and if I have to, as a researcher find a better life for us, I will. I don't like being tired or staying in bed. I don't like getting up and falling down. I don't like getting out of the shower with conditioner on my hair, or having seizures, or talking like my IQ dropped 100 pts, but today in my doc course, I kept on task and lost my train of thought once in three hrs. I am grateful for that, and the humility and gratitude POTS has given me. I am glad it taught me to experience, not deny, the moment. At that moment, I felt despair. I embraced it, and moved on. Suffering is part of the human condition, according Buddhism. Learn and hopefully the next moment, if u r here, will be a good one. IN my quest to be the poster child for recovery, I have found that the Vitamin D deficiency was the major source of my depression. After a month on mega doses, I feel amazing emotionally, but still cannot make the bed...take it as a sign of depression or take it as a sign of illness. Chris Reeve probably couldn't make his bed. He was even suicidal, but he eventually kept up the fight for himself and all others. So, I shared my dispair, and I share what helps. All shrinks should be required to rule out physical causes before prescribing psych meds. The change has been dramatic. Blue, please get urs checked, if u have not already. POTS taught me not to judge people, including to not be such a perfectionist. Acceptance is the key. It is accepting the moment honestly whatever u see in the mirror. If praying works for u, I will share one prayer for myself and all others, to have the strength and integrity to face what we must. I don't lie to myself when I am down, but I also don't replay the tapes over and over if I just accept ME. If someone doesn't have the patience to be around me, i excuse them by all means and find someone more acceptable. But did Dana Reeve have any idea that her knight, superman, would fall off his horse? I met him before his accident. He became a much more genuine person after. Thanks for your attempt at help to the person who told me to look in the mirror. We don't have to judge or agree if we have not walked in each others' shoes, but we can walk supportively side by side. Thank you, blue for always being so real. I admire you for your bravery, strength, and dignity no matter what u are facing at any given time. Thanks for coming into my life. You have ur head together more than u may even know. HUGS!

Nesh,

Some of us are getting better--you can too--but you may have to shift the directions in your care.

Write or call. I care about you.

Sushila