With Being So Ill, How Do U Deal With Fear On Top Of It All?

[k&ajsmom]

Ok so assuming you have fear of course lol

My whole life I have been a layed back easy going person. I always have had a joke to crack and am usually the one that people call to cheer them up. I have always taken everything in stride thinking, its only temporary, might as well make it funny, laughters the best medicine , right.... ?

Ive been through more than my share of hard times, somethings bordering on tragic and nothing has gotten me down for too long.

I also have always had autonaumic dysfunction, first crush....4 grade teacher, Mr. (dreamy) Barnett, why? well because he carried me to the clinic everyday when Id hit the deck in his class and said "no problem sweetie" and then sneak me a soda from the teachers lounge. As I got older I didnt even bother me that I was excluding myself from activities due to my health, like going to the beach or a theme park, I just knew to feel better there were somethings Id have to sit out on to be able to enjoy the things I could do, so its not that I cant deal with being sick but since it has developed into POTS, I cannot get the fear under control.

Ive have developed a horrific fear of....well....dying. I cant seem to help it or control it. While I was in the hospital it just aggravated and grew this fear, which I expected, because I loathe hospitals but when I got home is when it crippled me. I am constantly worried to push my heart, being that it always feels ...exhausted??

I am so scared they missed something, and it mainly stims from my cardiac symptoms. They did lots of tests and I ve had hypotension long as I can remember and have had many a conversation where the person Im talking to doesnt know I cant see them cause my vision was blacked out. Id wait it out and pretend I was fine and honestly I felt I was, it was second nature. The cardiac symptoms are so unnerving I am scared to move some days. Im finding it hard to recondition myself from this. I do feel awful, however I feel alot of the little bit of energy I have goes to fighting the fear.

I try to give myself a break and say it will pass with time but its not...and I just dont have many moments that I feel well, between living in the bathroom and headaches,wierd symtoms and exhaustion i dont wanna waste energy being scared my hearts gonna stop if I go grocery shopping...ugh...I have constant tachy/brady.forceful beats/pvc's/ and just a feeling of breathlessness from it. Gabas dont help, they crash my system and ....I am a bit of a pharmacophobic soooo the less meds the better for me. (geez Im a mess)

Sorry for rambling and venting but I am so OVER IT. I know I should maybe seek a therapist for this or something, but honestly....they are just gonna tell me to go to my "happy place". or find peace about my mortality, but these arent panic attacks, this is constant. I have faith in God but it just seems to be not taming the beast within so to speak ...

Do others have fear like this??? does anyone else worry about their heart like this? Part of me feels like I am making myself worse and the crazy side says, nope...there is something wrong that they dont see??!!

How do you deal with it? how do you go to work and drive yours kids to the store?? I cant seem to do these things on my best days?? Im scared to take a shower or vacuume the house?? I have missed half a year with my kids, trick or treating, school plays, christmas shopping....

Is this a normal stage of healing or coping??? I hope someone can relate, cause I feel like a hypochondriac sometimes, like POTS cant kill you, so why do I feel like Im gonna keel over all the time!!

Again Im so sorry for the post, these are things i am not willing to share with others because it just grows the fear in me when I say them outloud. Kinda like monsters under the bed....thx for reading if ya made it through all that lol

Hope everyone had a blessed Christmas =)

-Sarah

[SeattleRain]

Thoughts of sudden death (No, not that awesome Jean-Claude Van Damme movie!) run across my mind when my symptoms are at their worst. If I knew for certain I would survive, dealing with symptoms would be a lot easier. It's the unknown danger that really gets to me and prevents me from doing certain things. It's been getting better lately as I've been doing things to really alleviate my symptoms but sometimes they're still there. And, instead of worrying about dying I just get used to thinking that if I do, I'm just going to have to live with it! No pun intended.

I feel certain they overlooked something/they don't know what's wrong with me and that's really tough to deal with because doctors just don't do things your way. They'll listen to your concerns but they like to chalk everything up to paranoia. I don't blame them, but sometimes I wish they'd test, test, test and then test some more. I wouldn't mind some angiograms, duplex ultrasound of my legs, MRI, and a handful of other tests just to make sure. Putting my mind at ease to me is just as important as anything else...

I hope you find some relief soon!

[southbel]

I completely understand this feeling. When my tachycardia gets going really bad, I think to myself, a heart is not meant to go this fast for this long. My cardiologist has done every test in the book, including a cardiac calcium score test due to a family history of early and massive fatal heart attacks in my family. The only one that managed to catch hers early in my family is my aunt and she only caught it because she also has autonomic issues (which caused me quite a bit of fear too!). He was very understanding of my fear and did all the tests to assure me that my heart was healthy (I think he was assuring himself too given my family history).

But, even with all that, I still have that fear in the back of my head. I just can't help it. You hear on news programs, from doctors, etc that you should listen to your body. Well, my messed up body is telling me 'holy crap!!' That doesn't help at all. One of the functions of our autonomic system is our body's ability to give us clues when something is wrong (e.g. feeling of impending doom). I think with our messed up signals, this is a natural thing to have. I keep telling myself that, sometimes over and over again.

[abbyw]

I can also relate, especially since I've never been tested for anything! My doctor probably thinks I am a hypochondriac and does not know anything about POTS. I am often worried that either I have a tumor or some heart defect and one day I will be so ill that they will figure it all out too late.

On the other hand, my father passed away from a massive heart attack a few years back. His doctors knew his family history, he was being treated by the rule book. He had just had a stress test several weeks before, which came back perfect. He walked around with it in his pocket - he was so proud of it! He died on the tennis court - getting his exercise. His doctor came to visit us twice after he died, saying that he went over the files and they were doing everything they were supposed to do. As morbid as that is, it shows me that God runs the show around here, and we will go when we were meant to. There is only so much the doctors can do. Yes, we would feel better knowing we had tested for everything, and we should do whatever modern medicine has to offer, but there are no guarantees out there.

Believe it or not, that sort of makes me feel better. I try to remind myself to take it one day at a time, and not think too much. Just do the best I can each day.

That's in my rational moments. In my not so rational moments, well that's another story completely.....

And now that I've read southbel's post, I can be nervous that I am the next one in line for a massive heart attack...(But my father had no dystautonomia)

[bebe127]

Right there with you. My fear waxes and wanes. I agree with southbel about our signals being messed up. I've read that our ANS controls our fight or flight response as well as anxiety, so with someone that has this all out of whack, it is no wonder we feel this way, many times all too often.

I had a few sessions with a psychologist once and it was a joke (if you've read my blog post on this, you'll know what I mean). This is NOT to say that therapy cannot be a helpful tool. I think the secret is finding one that you gel with. Kinda like the doctors in our lives, some are great and understanding, so you keep those; other's are complete idiot's, so you throw them to the curb and start searching again. I think that it would be wonderful to find a person that you can talk to. Maybe there are support groups for chronic illness in your area (sadly there are none in mine that I have found, plus I don't drive, so it would be kinda hard even if I did find one). When I saw the therapist, she suggested I get this book: "The Anxiety and Phobia Workbook" by Bourne. I went out the first day and purchased it. Even though I know that I don't have anxiety or phobia disorders (as it all has to do with the ANS being out of whack), I did find this book to be helpful. Just like everything else, I take information that is useful, and throw out all the rest, so to speak. I did find this book to be quite useful. Of course being able to vent on these sites is helpful too, but if you are anything like me; I feel sometimes that I would "give my right arm" to find a flesh and blood person that I could talk to, that wouldn't judge, but that would just sit and listen with a few understanding "umhms" thrown in for good measure.

You also mentioned about your faith in God. I am a believer, and I do believe that He can do anything. I do believe that "we can do anything through Him who strengthens us". I also believe that God is not a magician. It is His will for our lives that he wants. I don't believe that He wants us to suffer, but to find joy in all things. I know that it is so hard to find the joy when we are feeling so poorly, so many of the days, but I do feel (personally) that at times I am thankful for this trial of POTS as I wouldn't have drawn closer to Him as a result. A book that I find helpful when I feel intense fear is "Praying Through The Psalms" by Clift and Kathleen Richards. It is a book with specific prayers relating to the Psalms dealing with everthing from happiness, thankfullness and joy to healing, deliverance, and fear. I have found this book to be my saving grace on the days that I feel most vunerable. I used to even take it in the car (when I drove, I only drive when absolutely necessary now) and have the kids read certain prayers out loud to me just to get me to where I needed to go.

I do hope you find some relief and that you are encouraged by the many others out there that feel the same way you do. This obviously won't help you physically feel better, but emotional and mental health are just as important. Wishing you well.

[misstraci]

Hey, Christmas was good, hope yours was as well. Funny story about your 4th grade teacher.

No assuming here, I'm totally fearful and more specifically, yes, about death. I am also always scared that a doctor missed something and wrote me off as "pots". How in the world can I feel the way I feel, which feels like repetative heart attacks or strokes, be "normal" and i"m going to live. I never had anxiety or depression before (even though tons of doctors assume that) BUT NOW, I'm kinda headed in that direction. I mean, living like this everyday definitely takes its toll not only on our body, but on our mind and spirit as well. I am scared to take showers and vacuum and all those things. I 've missed out on the kids' school stuff and just life stuff in general. I HATE POTS or whatever is happening to me. I know it's not healthy to worry and fear but I can't help it. I'm scared of dying, i'm scared of being forgotten and of being replaced. I want to raise my kids, i don't want some other lady/girl replacing me and them growing up with her and not knowing me, especially my son who is only two, so yes, these thought run through my mind all the time.

I saw a saying once and I really liked it, it said "If you pray don't worry, If you worry don't pray". It makes since but I do both those things. I'm not doing it right, haha, but I can't help me innate fear that I posses. I wish I were a happy-go-lucky person who could make the best of the situation and for the most part I do, I just can't seem to shake me "fear"

[spinner]

Great topic. Ive always believed since getting sick that the mental part is easily harder than the physical challenges.

This is one reason why a support team is so essential. When they help bear your burdens, your emotional health

boosts your physical situation.

Fear is the ultimate in mental challenges. It seems like its a big part of the daily battle in my thought life. I go back and forth between focusing on "what is the missing link in all this"?, and "everythings going to be all right in the end if i keep fighting this".

For me, the biblical component is what helps me-the rock solid truths that have transformed my life and THINKING.....but not my circumstances.

For a lot of people its all the research we do----knowing more than our doctors sometimes. I learn more on this forum than i do pretty much anywhere else. Im also on the cpap forum, and sometimes other forums such as adrenal, FB, etc. Even if you dont have those conditions, believe me, you'll find something that helps.

The last thing is just have a trusted friend who can listen. We have a need to download all this junk to someone who doesnt give advice, just listens.

[imapumpkin]

Hi Sarah. I totally get where you are coming from, I absolutely am acutely afraid of sudden death, esp because of cardiac symptoms. I have always been extremely hyper-aware of my body and health and because of all my health issues its like I'm constantly waiting for the other shoe to drop. Constant chest pain does not help quell these fears. I think what we're feeling is mostly normal given that being chronically ill is stressful and draining and traumatic.

I also agree that it's frustrating when someone says "go to your happy place" because obviously if it were that easy, if we could find some sort of peace with our fears on our own just be thinking of something positive, we wouldn't be seeking professional health in the first place >_<

Something that has helped me a lot ( although it has not eliminated my poor health/dying fears because I think I'm always going to be a compulsive worrier, esp about health) but has helped distract me and given me a little bit more positive energy is guided relaxation meditation. I can't do regular meditation because I just fell asleep, but they have lots of CDs and even exercises on youtube that are great for relieving stress. I I've been doing them like crazy since I found out about my heart surgery which is only a week away (talk about serious fears!) but the deep relaxation meditation has been surprisingly helpful with my anxieties.

Here is one that temporarily gives me relief from my health anxieties:

hope it helps or that you are about to find a therapist who isn't so dismissive and can help you work through the fear. You're not alone.

[targs66]

I'm like you, Sarah, in that I used to be so relaxed about things. An ex-boyfriend (from about 20 years ago) recently said to me something about how he remembered me as "completely fearless." It makes me so sad - I was able to pack up and move myself from Boston to Austin, TX - alone - because I wanted to go to a university that was somewhere warm! Now I stress - really stress - if I know I have to go to the grocery store tomorrow.

My theory is that the anxiety is twofold: 1) something about this condition is releasing whatever it is that makes humans feel anxious (adrenaline? cortisol? or maybe a shortage of something?), and because I feel desperately PHYSICALLY anxious, I have to "pin" that anxiety onto something, even if it's irrational, like a trip to the grocery store. and 2) this condition makes us feel debilitated and incapable, and that is anxiety-provoking - "if I go to the store, I might have to park far away and I'll be very dizzy in the parking lot," etc.

I recognize that these theories may not be scientifically sound, but it helps me to deal with the anxiety by treating it as a separate side effect that needs to be ignored to the extent possible, rather than a warning sign that must be acknowledged. I know that's really difficult to do when you're anxious about what appear to be life-threatening conditions - and believe me, I can relate to that sort of fear- but sometimes I do find the anxiety is lessened by just treating it as yet another side effect. In other words, I can tell myself - "yes, my anxiety is screaming at me telling me there's something desperately wrong, but that's a side effect of this illness and not an actual indication that something terrible is happening, so I should ignore it if possible." I hope that makes some sense!

[k&ajsmom]

Thank u all for the wonderful repsonses,

Seattle...hahaha die hard on ice, u took me back to the 90's there, I think if I looked in the attic I could find that one on vhs still...

I wish the docs would do some more tests as well and the very least to ease my mind. My concern is when they admitted me, I started feeling asymptomatic (cardiac related anyways) except pvcs. So they never saw what happens at home, of course thats seems to be the way it goes for a lot of us. They saw the tachy and pvcs but the overfilling and skipping and odd feelings they missed and those things give me fear. But I guess I need to suck it up and "learn to live with it" as well...pun totally intended..lol

Southbell....Like u, I have a nasty family history with heart disease and cardiac issues. All my uncles and grandparents have had major double and triple bypasses by the time they were in there fourtys, however I seem to have symptoms from my mothers side....low bp instead of high, low cholesterol etc so I know I shouldnt worry ....man if you havent hit the nail on the head with our systems are trying to tell us they dont feel well...so "doom" it must be. I guess I need to learn to ignore it?? however, I dont wanna forget it and still think a few more tests would ease my mind. I dont think Id worry as much if it wasnt for elevated cardiac enzymes while I was admitted...with no explanation....eeek

abby....I guess we need to listen to our rational selves more. there is just no definate predictor to an outcome. Im so sorry about your dad, it just seems u are correct, God runs this scene and we are not allowed to rewrite the script but so much. I was thinking to myself today, as I forced myself to venture out of the house....if Im gonna croak, mine as well do it with a change of scenery. As awful as that sounds...it helped in a...wierd way lol

bebe....I totally agree, when Im rational i know its my system blowing things out of proportion...but thats hard to maintain a grip on. Im glad Im not alone and have this forum but like u said. It would be so nice to have someone to relate with, flesh and blood, that I dont have to explain each and every "thing" im dealing with day to day. My fiance was asking me today...."so, how u feeling?" I said....with an eye roll...same as usual.....I tried to explain to him...my illness is like a circus....and each moment has a different crazysymptom with the strobe light on it...but just cause the other symptoms are not center stage doesnt mean they arnt there and I dont feel them. Then I realized I compared myself to a circus and new I was crazy lol I get so tired of trying to explain it in a thousand ways, Im running out of analogies lol..... Anyways, I honestly dont know how a therapist could help....I am not unhappy....I am sick...I dont need to imagine a happy place cause Im here....but I cant enjoy it, and all I need is my health sooo how can u help me with that ... this forum is a great therapy next to a fellow flesh and blood potsy lol It would be so nice to have someone to talk to that doesnt say "but u look so much better"....just because I happened to crack open the covergirl and maybelline that day...ughhh

I have faith and was raised in it, however it is ...fragile at times. When I first got sick,,,and sometimes still do....question if God is teaching me a lesson or trying to change me in someway, I hope he is, then there would be a purpose to all this and I wouldnt feel like such a lost soul. He is not a magician for sure (well he could be, what do I know lol) but he is teaching me something, I just dont know what yet.......maybe its patience lol

Misstraci...so glad ur holiday was well....I hate that so many of you feel the same way, because it really is...just horribale to live fearful...however in some way it gives me courage kknowing u get through it too.happy go lucky or not lol I am a grumpy butt these days lol My ususal sarcastic silly self only comes out when the right combination of fear and pain dissapaite for a few moments...I miss feeling relaxed. My fiance says he is actually happy to see me get mad sometimes cause for a while I went totally and completely numb with fear. I am even shocked how numb I was...Fear is crippling for me and honestly without you guys I think Id still be in that place where I could not even address this at all. In the hospital, they initial told me I most likely had cancer and to be prepared so the fear of losing my kids and them losing me was .....overwhelmingly horrific to say the least. I totally get how u feel with that. Now Im just scared Ill be alone with them and drop and scar them for life...I know my imagination is stoking the fire and I need to just live for each moment with them but its so hard to when ur ans is saying....AHHHHHH call 911!! <sighhh> Pots is such a dramatic illness physically and emotionally

SPinner...u are so right...emotional health and balance is completely relavent to physical well being. The fear just keeps me from believing it and Im spinning in circles some days trying to get a grip on the hysteria in my brain. In the beginning of my downward spiral i remember standing on my front porch at 4 am and crying (and talking to myself lol) saying I have gone crazy, thats it, im just a loon this is all in my head and Im making this all happen. I have changed that way of thought however being that my symptoms were just....so obviously undeniable. I however think some part of what I originally thought may have been a healthy reaction. Some of this is in my head, certainly not the majority, but the fear does, in my case make me sicker. I am learning, slowly and stubbornly to trust God...without yelling at him =P he is a good listener and puts up with a lot of my guff so he must love me enough to keep me a little sane lol

I am lacking in the friends department to lean on. I recently had a freind of 16 years steal all the money out of my business account. I have forgiven her, even though she is not sorry and although I am broke and maxed out on credit being I cant work now, I dont want the money enough to pursue it. It took a lot out of me but rebuilt my trust in myself and ones I love. I have one good friend I trust with my life, after that. and she has been running my business for me so she is busy and we cant chat much. I wonder at times if God is silencing everyone else, so I can hear him without any excuses. =)

Pumpkin....duh...why didnt I think of meditation lol thanks for the link. I think this would be a grreat start to the day to shut my brain up lol yea, therapists kinda have shed a poor light in my past so as much as my mind says u need help here, I htink with encouragement, I have the knowledge I need to heal , Ijust have to let it happen. When my ex-husband walked out on us...i went to a therapist and she said "go to your happy place when you feel anxiety" blahahaha ummm yea..ok, that'll fix everything lady.... anyways, I am a bit obssesive in my thoughts and I will always be a worrier., but this disease takes it to another level and cancels out the parts of my personality that kept that kind of behavior in check before..but I cant say how much it helps knowing Im not crazy (totally anyways), and Im not alone.....=0)

targs....fearless....ahhh...that was me as well. By the time I was 19 I had travelled to everystate, coast to coast in a pop-up camper with barely any cash, meeting new peole everyday, sleeping in the redwoods and dreaming of living in Seattle one day and being a writer. I had my daughter soon after, I had survived a horrifically abusive relationship where I almost lost my daughter, among so many other things. I loved to be moving constantly, loved the thrill of anything that got my adrenalin pumping.....and now......Im scared to go get a loaf of bread and lord forbid there is a line at check out...ill just get it later, breads overrated...wahhhhhhh....lol

Astounds me how much I have changed, some of it out of maturity in a good way but alot of it out of fear from not trusting my own ability anymore.

I think ur theory is brilliant. It is somewhat a side effect and I need to treat it as much and stop giving it power to predict my recovery. That is however much easier said then done at moments. lol

I think ur absolutely correct as others have mentioned our bodies are in flight mode with all these chemicals being out of proportion, but the way u said it makes since, u have to pin it to something, ie; the trip to the store etc...this is a helpful way of thinking about it to me and I thank u for what I couldnt articulate or connect in thought. =))

I apologize for my lack of grammar and spelling....I know its awful right now.... and

Sorry about the long replies to everyone, I know is a lot of rambling thoughts, but u all mean so much to me with ur replies I felt I wanted to respond to everyone individually because whether you know it or not ur thoughts and words have been priceless to me....Take care and big hugss =))