Going To Hades Just For Thinking About This . . .

[Elfie]

As mentioned in the topic segment, I am probably going bad bad places just for thinking about this. However, I figured that if there ever was a place where people might understand, or at least kindly set me straight, it would be here.

We've been very lucky in my family and group of friends to have very few people deal with serious health issues. I've had family with orthopedic problems (bad hips, bad backs, old injuries-- not to say that these can't be painful and limiting) but only a handful of people with serious medical problems otherwise. For the most part those that have/had issues were elderly and often the issues were related in some way to lifestyle choices (former smokers with cancer or COPD, overweight family members or family members with poor diets or drinking problems developing type II diabetes-- not that that somehow makes them "deserving" or anything). I have one cousin that had very severe asthma as a child (now he is almost an adult and has no issues) and have had several friends with juvenile diabetes. Most of my relatives and many family friends died in their 70s or 80s rather suddenly of old age/natural causes or in accidents. We don't have family or close friends with non-fatal chronic illness for the most part either. However, my family and friends tend to be very caring with a lot of sympathy and always willing to take care of one another.

Prior to ever reading studies or statements comparing POTS/dysautonomia patients' quality of life to that of patients with CHF, COPD, and kidney disease patients needing dialysis, I remember visiting family members with COPD, lung cancer, and uncontrolled diabetes/kidney function issues. I listened to their complaints about shortness of breath, dizziness, memory impairment, heat intolerance, cold hands and feet, not being able to stand or walk to do things, fatigue, ect and really feeling like I could relate--- at least better than anyone else in the room, despite being 40 years younger. Of course, I never thought anything of it because "how dare I compare myself-- POTS isn't FATAL."

Then I went into heart failure. Luckily today my heart seems to be undamaged by the episode and I'm not currently being treated beyond attempts to keep my heart rate down and blood pressure up so my heart isn't working so hard. I can very clearly state that POTS and CHF are a lot alike-- in fact, I didn't even realize symptom-wise that something was going on. It was the sudden weight gain that lead my doc and I to discover that it wasn't just more POTS fun. Of course, one episode definitely increases my chances of CHF developing again (or becoming symptomatic depending how you see it) and having heart damage or dying from it compared to other POTS patients. That said, I'm still being told that I'm lucky and POTS (even my POTS) isn't FATAL.

After that episode my treatment/improvement with meds and lifestyle changes pretty much plateaued, but I did read up on studies that compared quality of life and symptoms of POTS to other conditions.

My grandfather suddenly became ill and was hospitalized for a bacterial lung infection. He did not have directives, but became ill enough that his sons (mostly my father) had to make medical decisions for him. He was on a ventilator, but doctors said he had a good chance of recovery. However, his kidneys were damaged by the harsh antibiotics. The week prior he'd been up, hiking around the mountains with his 18-year old grandson. My father called me up to ask me what he should do about grandpa. I was shocked, but did my best to support and advise him. It about floored me when I got a call saying that he and his brothers had taken grandpa of the ventilator because they didn't want his quality of life to suffer . . . having to be on hemodialysis because of reduced kidney function.

Of course, at the time I was more worried about family members and grieving my grandfather, but looking back it kind of amazes me.

Shortly after this, a dear close aunt who had been suffering with COPD for some time passed away. All I heard from family and at the funeral was how good it was that she had passed because of her long suffering and poor quality of life. I remember sitting in her hospital room shortly before she passed (they thought things were improving and she would be going home soon) and being to sick to visit and laying down in the corner (yuck!) while she sat up talking with family for hours.

I've also had family and friends tell me that they would rather kill themselves (and family members that have ignored warning signs and refused treatment for conditions) rather than deal with a reduced quality of life that they've seen loved ones struggle with, even before the patients reached end-stage and were house or bed bound, ect.

Now I have a friend who is struggling with cystic fibrosis. I'm not extremely close to him, but he is the long-term honey of one of my very best friends and is very close friends with another very close friend. He is a lung transplant survivor who did so well post-transplant that he was able to return to a incredibly active job and runs and hikes/participates in adventure sports on his time off. My understanding is that he went from fairly healthy lung-function wise to being on the transplant list and receiving a transplant fairly quickly by CF and transplant standards. Neither of my friends knew him before the transplant (it was more than 5 years ago), so they mostly know the healthy him. Of course, when he gets sick he can get really ill, and he gets more colds and infections than most because of immuno-suppression. However, I think it is considerably easier for healthy people to understand someone being short of breath, dizzy, and extra tired when they are sick with colds and chest infections which most people have experience with. He has had a few more infections than normal lately and is having a hard time recovering from his last one and there is fear he may be rejecting his transplant. Even though obviously I have no idea what he is facing, we relate symptom-wise each time he gets like this. Of course, we are all incredibly concerned for him, me as much if not more than most (CF was part of the curriculum on genetic illness that I studied in school, so my relationship with this surprisingly fit friend isn't my first/only knowledge source about the disease.I absolutely don't want to see this friend suffer, pass away, or undergo the long transplantation waiting and recovery process again. He is a sweetheart of a man and I often joke that we could just put his nervous system and heart in my body and create a fully-functioning person since we have similar senses of humor and somewhat opposing strengths-- the two of us would make somebody very lucky. LOL ). All my friends are very concerned not only about his long-term prognosis, but how he is feeling.

I'm really grateful everyday that I don't have something fatal. I'm not trying to compare my life to someone suffering from cancer or on their deathbed.

I do still feel confused though. My family and friends have made it clear that they don't believe that suffering or living with a reduced quality of life is worth it. Obviously they weren't thinking about me when they said these things, but it is a bit mind-blowing considering how I feel on a day-to-day basis and the studies that compare quality of life. On the other hand, people have made it abundantly clear that their expectations of me don't change-- because POTS is not FATAL. Even when I was being tested for heart failure again because my fatigue, shortness of breath, and hair loss (the unique/worsening symptoms from the last time I went into CHF) I'm still getting phone calls about how tired and stressed out so-and-so is.

I don't know how to feel about this.

I'm not saying that I'm not thankful and very lucky that POTS isn't going to kill me.

However, I am probably going to **** for thinking about this . . .

[Katybug]

Elfie,

I don't think you are going to ****. Actually, its interesting that you post this tonight because I am watching the move made bout Jack Kovorkian's life. It's all about the question of quality of life (obviously to the extreme.) I just don't think most people understand how debilitating POTS can be, partially because it is rare and unknown by most people,and, partially because our symptoms are not always visible. We often look like healthy people, so if people don't see the bad times they can't even begin to understand.

I think the biggest life lesson I have learned from POTS is that it really doesn't matter what other people think or how they feel about me or my illness, it is only through self-acceptance and kindness that I will get through this.

Here's to finding a better quality of life!

Katie

[issie]

I have nearly died two times and thought my life was over. But, I will sit and listen to people complain about a cold that they think is going to "kill" them - in silence. People are so wrapped up in their own world "universe" that they really don't think about any other people and their suffering. Unfortunately, it's us with chronic illness that do think of others. Some people seem to be very self involved and not able to see past the "world" that they have created around them. I think that us with chronic illness have learned to expand our "worlds" and have opened our eyes up to people and things around us. In many ways - we're better off than they are - we have a sense of others and are not so focused on ourselves that we can't have EMPATHY and COMPASSION for others.

I sense that in you and it makes you a beautiful person. You are very special and have a caring heart. Don't worry that those around you don't notice it - those of us with our eyes "OPEN" see you as you truly are. Hang In There! It's a tough world and you make the darkness a little brighter.

Issie

[Katybug]

issie,

Amen to what you said! I sometimes hear other stories on this forum or from my friends and think how much worse it could be and am often in awe of others who suffer much worse.

[tachyfor50years]

Dear Elfie,

I read your post with tears, I had to dry them now and then. I really know what you are talking about, as I mentioned in another thread, half

of our suffurings come from mistreatment and cruelty of people especially from medical professionals and their (police power) !

I am thinking of all our sad stories, I wish if somebody can make a movie (a very powerful one) from them.

You're in my Comforting Thoughts... Wishing You Comfort and sending You Cheer )

Brightly Warm Blessings to You hun.

[HopeSprings]

I think your feelings are perfectly normal and I'll take it one step further... there have been times when I have thought, if I have to live like this, I don't want to live. There have been many nights I have gone to bed hoping that I wouldn't wake up in the morning. I hope this is not perceived as being "dramatic" - these are real feelings and I've wanted to talk about it before, but was afraid to. I would never harm myself because my children (and other loved ones) would be so hurt, but sometimes when your brain is scrambling to find of a way out of this miserable situation, that's where your thoughts go. Has anyone else felt this way at times? I KNOW things could be worse - there are worse illnesses, but this one is pretty darn bad too. Anyway, I think your feelings are normal for people dealing with debilitating chronic illness and you are certainly not going anywhere bad for having them.

[bellgirl]

Everything that you say, we have all thought about at one time or another. I believe that the most important reason for living is to be an encourager and support for others who are hurting, no matter what their circumstances. Everyone in this life, experiences some sort of pain, whether it be physical, emotional, spiritual, and we don't always know the struggles they endure either. It sounds as if you have been there for friends and family, supporting them, whenever and whatever they are going through, and that's commendable. I have given up on worrying what other people think, because it really doesn't matter, anyway...God knows our hearts, and the rest is loving others in the best way that we can, and praying constantly...

[issie]

I think when I'm having a REALLY bad flare - I have a fleeting moment of just let me go to sleep and not wake up - but, since I have been on the edge of death a couple of times and have experienced the peacefulness that being in that state brings - I no longer fear death. It's living that is hard - not death. So, if someone passes away and goes to sleep in death - it's no longer a struggle for that person. (The Bible doesn't support a burning H***, and I don't believe that God would put a person into a place of torture - because, he is a loving God and just doesn't do those things. Some religions have created this idea to scare people into living better lives - that hasn't helped. And, like I said a God who is all loving - doesn't do that. (If you want to know more of my thoughts on the Bible and what I just said PM me.) Whether or not I continue to live and struggle in this imperfect body of mine or not - either way I hope that when I do take my last breath that what I have experienced in life will have helped others and made their lives a little more bearable.

But, yeah Naomi - to answer your question - I think we all have fleeting thoughts at one time or another - that we are tired of the struggle. But, really none of us want to die - we just want our situation to change.

Issie

[skiberthoud]

Issie said it so well: We don't want to die - we just want our situation to change. We were created with the desire to live - we are meant to live...just not this way

And, Elfie, I think you are justified in your feelings. It's hard to keep positive all the time. We all have our moments. Chronic illness is something that can only be appreciated by those experiencing it. I feel so badly for all those times when I was well and would have a hard time having an equal amount of sympathy for those with chronic illnesses, especially those hard to see ones that we know so well, and those with "more serious" diseases. I also think that when people make comments about quality of life, those comments are relative. There is usually some good in any situation (there can be exceptions I guess) and we just have to see it. We all have heard or seen something that made us think, "I could never do that or never live that way" but if we were living it we would see the good and be greatful for what we had. So perhaps when we hear those comments about quality of life we need to put a filter on them. They may not be in our shoes and not understand that their words can confuse and hurt us, but it's really out of ignorance they are spoken, because when it really comes right down to it, they probably wouldn't really want to die if they had the same quality of life as us, they would just want it to change, like we do. After all, there are those who can barely communicate and are dependent on others for most things, and they still find joy in things. They think life is worth it! And that's because that's how we are wired. The desire to keep living is normal...the illness and suffering is not!

[Katybug]

Naomi -

I don't generally feel like not waking up, but, when I was taking the Topomax and it made me so sick, I had several nights when I thought, "If its going to be like this from now on, plese let me go to sleep and not wake up." I was bed-ridden for several weeks at that point and once I was completely off the medicine, I was surely glad I did wake up each morning. But, I think it is normal to have the thought when your body is being really dysfunctional. I was in a constant state of feeling like I was having a heart attack and a stroke even while laying there in bed not moving. I could even see the concern on 2 of my doctor's faces when they saw me during that period of time. These are the times I force myself to think, one minute, one hour, one day at a time, I'll make it out of this thing. Just know you're not alone in this.

Katie

[sue1234]

"I'm really grateful everyday that I don't have something fatal. I'm not trying to compare my life to someone suffering from cancer or on their deathbed."

I agree on this, BUT, and this may sound strange, at least people with cancer know what they are up against. It irks me to no end why POTS hit me all the sudden when life was just going great. And, then it greatly irks me that doctors haven't figured it out yet. If I can't be cured, then I want to know that. But, if there is hope out there for a cure, I want to know THAT very much! I know that right know medicine is only offering band-aids, so I just keep looking for the research that might be steering in the direction of a cure through understanding the cause.

This has really shifted my life in a direction where the "sweating the small stuff" means nothing to me, but appreciating the small stuff means EVERYTHING to me. I have been able to go deeper into "me" and really find that I understand more of life's mysteries. I was religious, but not anymore. I would consider myself more spiritual now, and from that angle I've gained a greater perspective of life. That seems to sustain me in my journey. But, I still want to know the mystery of POTS!!

[HopeSprings]

Naomi -

I don't generally feel like not waking up, but, when I was taking the Topomax and it made me so sick, I had several nights when I thought, "If its going to be like this from now on, plese let me go to sleep and not wake up." Katie

Not to totally change the subject, but I had a HORRIBLE reaction to Topomax too. Some Dr. decided I probably had some migraine disorder and gave me that poison (I'm sure it helps some people, but it was poison to me.) Felt like I was having a stroke too - so scary.

"I'm really grateful everyday that I don't have something fatal. I'm not trying to compare my life to someone suffering from cancer or on their deathbed."

I agree on this, BUT, and this may sound strange, at least people with cancer know what they are up against. I still want to know the mystery of POTS!!

Yes, one of the hardest parts is the uncertainty of it all. Maybe things will get better, maybe they'll get worse, maybe answers will be found in our lifetime, maybe not. Today I feel like I can make it, tomorrow it feels like I'm going to die. Who knows about next week. Where's the problem stemming from... The brain, the heart, the endocrine system, the nerves, the kidneys, the blood vessels, the spine, the stomach, an infection? - nobody really knows. I think having more definitive answers would make it easier to deal with.

[Libby]

If you're going to ****, save me a seat because I'll be right behind you. It really is interesting how so many of us get a 'suck it up and deal' attitude from family and friends.

In a way, I wonder if I'm better able to tolerate the symptoms because I've been forced to do it without complaining for so long. The nurse who did my ttt first suggested it to me, telling me that by then most people would have passed out (or would be begging her to put the table down), but I just said "Oh, there goes my vision."

She thought the reason I remained conscious (sort of) and calm was because I had had so much practice not passing out. I was never really allowed to let my symptoms inconvenience anyone (but me haha). And I'm pretty sure it was the years of not-complaining that kept me nice and civil, because I know that I really, really did want that table to go down.

[Lemons2lemonade]

This is probably pretty radical but I just lost a family member last week. It got me to thinking that death is designed to prevent us from living through an eternity in pain ( how miserable would that be?!) But at the same time, I feel like even though pots isn't fatal, I'm slowly being tortured with no end in sight.