Hardest Thing You Have Ever Dealt With?

[icesktr189]

Okay this is pretty random and I should probably stop thinking too much at night when I am bored but...

Do you think having dysautonomia is the hardest thing you have ever experienced? I see all my friends talking about how hard it is to raise children, to make a marriage last, and go to college..ect. However, I really feel like nothing even compares to dealing with this illness, like they are not even on the same wave length. Now dont get me wrong, I think being a mother can be very challenging sometimes, but I personally think it would be 100 percent easier to have 15 children, than to deal with POTS every day. This is kind of like when people complain about a simple cold and we go through this all day, everyday.

I guess I just really miss the care free life and regret how much I took for granted.

[Lemons2lemonade]

Yes it is. And I went to college, have gone 3 days before without sleep and worked 85 hours a week-- 56 of those being from 10-6 in the morning (same week I didn't sleep for 3 days, was working back to back shifts). I have run many long distance races from 5k to a 10k that was literally straight up a steep hill for 7.4 miles. And none of those things even come close to this. As for marriage and children, imagine life for people who have those things with pots--those people deserve an infinite high five.

[icesktr189]

Exactly!

I take care of my daughter everyday with POTS and still dont complain half as much as some other normal people do with children. I understand that they dont know what it is like to have a chronic condition that is disabiling, but it is hard to watch how easy some people have it and take it for such granted. I had people tell me that because I became a mom at a young age that it would ruin my future, but POTS did that way before I even had a child. I didnt drop out of college or quit my job because of my daughter, I did because of POTS. I know that I would be going to school and working right now if I didnt have this, and that is what makes it so hard.

[Lemons2lemonade]

I know what you mean. It really gets me when people I know or who are on Facebook complain about having a cold and how.miserable they are. I never complain about this around other people and most of my friends don't even know I have it. Imagine what these people would be like with pots! Not trying to toot my own horn here, but I'm kinda glad I got it rather than some other people I know. They would be in a mental institution by now. Not to be all religious but I think god gave this to me because he knew I could handle it--well at least to a certain extent And that kinda makes me happy

[jenglynn]

I have been through a lot of difficult things in life... growing up in an abusive home, drug addict parents, (POTS symptoms young but not disabling until recently), abusive marriage to first husband who was a compulsive gambler, made the decision to divorce him after a 10 year marriage with four children ages 2-8 years old, being a single mom with very little help to four small children not feeling well (realize now that my symptoms were probably just starting to get worse) marrying my second husband who is wonderful but we have SIX kids between us and the amount of effort it took initially to "blend" our family was emotional, exhausting, heart breaking, wonderful, horrible, heart warming, terrible, you name it.... it was hard but amazing now that five years later we have these kids who don't even remember that they aren't "real" siblings. I can probably name 100 other things that were hard.

But BY FAR, the hardest thing I have EVER done is face this conition, every day with a courage I don't feel because I feel like I am failing everyone in my life. My children should not take care of me. That is MY job and MY job to take care of them. It breaks my heart to open my eyes after a syncope spell and see their faces over mine... and I wonder... how long do they have to stay strong? Is this changing who they are? The stress, the instability. The physical changes they have seen. The hospitalizations they've witnessed. The head traumas they've witnesses after bad syncopal spells (these are by far what worry me the most.). The uncertainty I feel because even with diagnosis, I am not improving. I thought Mayo would be the answer I was waiting for... especially after spending 2 weeks inpatient. I arrived home in even worse condition because their treatment was an epic failure (massive body rejection of IVIG infusions which has resulted in a ton of other health problems and not changed my original problems at all). Over a month in the hospital and I feel like I have taken ten steps back. NOW what? They are working on other options for me, but I can't receive any treatment until the IVIG is all out of my system... late March. And I go through the allergic reactions and rejection symptoms through that time. The whole process of trying to get diagnosed. Getting someone to listen initially. NOTHING about this condition is easy. No one understands it. I find myself explaining it over and over again to the point where I just want to print out papers with a definition because half the time I am so short of breath I can hardly talk. Every new doctor I see.. God Forbid he reads my chart in detail and does a little research on his own. I spend the majority of our appt. time doing HIS job and catching him up only to be told that there is really nothing he can do for me.. because this isn't his "specialty". So, Dani.. excellent question. This IS the hardest thing I have ever done (and a story for another time... but I once gave birth to my youngest child now 8 and perfectly healthy in a STAT C-section with NO anesthesia except local shots in my belly- because a small hospital and no anes. doc on staff and she needed to be out NOW so no time for anything but to cut her out- yes, that hurt but doesn't compare to this). From the very beginning of trying to get a diagnosis, to trying to get through the mornings, to trying to explain to family and friends, to trying to even GET to the doctor appts, to the syncope, and all the other horrible physical and mental and emotional symptoms, and the fear of never getting better, to being up all night almost every night my body is surging with adrenals that think nighttime is the time to play, to trying med after med hoping each time... MAYBE this one.... yet so far... none have been my answer. It goes on and on and we all understand it because while we all have our own battle that are individual NO ONE else can understand like we can because the ability to not control one's body is a concept you must KNOW to understand. I told my husband the other day.... DO you understand that I have this physically healthy body that COULD be capable of walking 10 miles, or shopping at the mall all day, or cooking dinner, or standing upright for more than 30 seconds but my brain controls the ability for my body to any of those things and because of that... I can't. Not because I don't want to. Or I am not trying hard enough. Or I have been too lazy. Because I just CANNOT DO IT. My brain is a complete maze of wires, nerves, and functions that NO ONE understands. Not my family doctor. Not any doctor at my home medical center. Not any doctor at

UW-Madison, not even the doctors at Mayo. Certainly not by me. The ONLY thing I know about my brain and body at this point is that I cannot rely on it. I cannot trust it. And it has betrayed me. When Mayo says they can't figure out what to do to fix the different diagnosis' that THEY gave me... WHAT DO I DO???? Live in bed forever? Is that my fate?

OMG.. Dani... I am so sorry. I took your post and turned it into my own venting, crazy diatribe full of my own frustration, confusion and feelings of being lost. Simple answer would have been... Yes... Autonomic Dysfunction/Failure/Neuropathy whatever they want to call it... or even POTS... is the hardest thing I've ever dealt with. And I am SOOOOO sorry that every one of you have to deal with it as well. I wish I could take it away and heal each and every one of us.

Jen

[Frugalmama]

This is definitely the hardest . Nothing else can even come close, as it didn't permeate my life to the same extent. Yes, having kids is hard (I had a 3.5 year old and a 20 month old when my youngest was born), but I would absolutely LOVE to get to parent them without POTS hanging over my head. I think this illness is so challenging because when I'm having acute symptoms (which happens every day), it makes me into a different person. Unless I'm lying down, I'm forgetful, rushed, impatient, and feel like I'm going to pass out - it is so hard to do anything when you're just trying to remain upright.

It's all about perspective, though. Most folks can't imagine what this is like because they've never experienced anything even close, and I'm happy for them that they haven't . But yes, I often have to pray through my bad attitude when I hear someone complain of something like a sprained ankle - but for that person, in that moment, it's a lot to deal with. On the plus side, think of the empathy we are gaining for other people

[puppylove]

Watching my Mom go through cancer was the hardest thing. But this is definitely second!

[julieph85]

Every day I look at other healthy moms with kids and I'm so jealous. Having pots with 2 toddlers and working full time and having RA brings me to the verge of insanity nearly everyday but some how I keep going. I agree with lemons, god won't give me more than I can handle and when I come out of this I will have an appreciation for standing that few normal people will ever have !

[songcanary]

I explained it this way to one of my doctors---that many illnesses can slow you up a bit, but dysautonomia takes you down like a cougar on a gazelle. He really liked that because now he has a good mental picture!

[gertie]

I'm nearly 70 so I've experienced about everything except my own death. I've had Dysautonomia (disabling) for at least 25 years. As bad as all these symptoms are they don't compare to Meniere's disease or watching a family member suffer & die from a terminal illness. I'm not saying Dys/P.O.T.S. is not bad & it did ruin my life but there are things worse.

[sue1234]

**CLUE**! Another person has an inner ear problem!! Why are many of us having inner ear issues??

By the time my POTS hit, my youngest was beginning high school, so I didn't have to take care of young kids. I have to admit that having kids was really a breeze. After one, I went to work(part-time) when he was 10 days old because it was the first summer I could work as a nurse's aide after my first nursing clinical semester. I didn't want to lose out on my few weeks of getting practical experience on a floor before my next semester began.

I had kids while going to nursing school. I followed 3 kids on 3 different sports teams for many years. Nothing was challenging, it just flowed. Life had its ups and downs, but it was always manageable. Until POTS. The medical system has been daunting over these few years!! If only you could know when you are going to a new doctor that that doctor is not a thinker, you could save yourself time and money.

I had a FB friend post this a couple of nights ago:

"I was reflecting on my Walmart shopping trip and had a thought. Maybe if some of the people riding in scooters would WALK a little more, they might not need scooters! They don't realize it's a vicious cycle!!!!"

I HAD to quickly get off of FB before I said something that would make me look bitter and angry! I actually didn't know how to make an informative post, so I didn't make any. And, 11 of her friends "liked" her post!

I think that is the other hard part of POTS--dealing with looking just fine, yet being so incapacitated. Too many people thinking "what a hypochondriac" or "just lazy".

[Elfie]

I personally think POTS is so hard because it steals both the physical and mental ways we cope with everything else in life. I've been through the death of close family members (young and old) and other people I care about having horrible diseases like cancer. I don't have kids but I played caretaker to my younger sibling for most of his life because someone had to.

I find POTS difficult to deal with because the effect on my body has taken away parts of me. When I am angry or stressed I can't go work out my body by taking a run, hitting the heavy bag, lifting weights, or even dancing. When I've lost people I've cared deeply about, I can't cry and grieve and deal with it all at once-- I have to shut off my emotions and then go back and deal with it a little at a time, feeling that early loss and pain often and even years later to avoid putting myself into a terrible flare. When I see people around me struggling I cannot take care of them, physically-- or often even have the prescence of mind to comfort them on a mental or emotional level. My body cannot deal with the good physical stress of getting stronger, the good emotional stress of growing, the good mental stress of experiencing new things, my body can't take going on new adventures-- or take the stress of relieving the stress of others.

I am still a strong and intelligent person (POTS hasn't changed who I am on a fundamental level)-- but I rarely get to share my intelligence and strength with those I am close to, let alone the world. Because of both the physical, mental, and emotionally disabling aspects of POTS I feel completely trapped-- like a coma patient that still has all of the potential in the world, but all that potential is locked into a shell that keeps it from getting out.

[MomtoGiuliana]

I fight a lot internally with feeling like a weak person or even a failure bc of the things I have not done/given up/been afraid to do b/c of POTS. There are all the fairly minor things I cannot do--go on a strenuous hike with a group of good friends, run a community 5K, go out to the brewery in town and have a drink with neighbors, etc. I have a lot of sadness at times about not having a 2nd child. This has been hardest for me. It does not help when I actually get comments from family and friends, ranging from "all only children are spoiled" or whatever their (IMO) uninformed opinion is to "I don't want my life to turn out like yours" to "you're my only friend who only has one child". I am sure I read into these comments too much and take too much pain from them, but I find this the very hard too--that on top of making a really hard choice, I feel JUDGED for my choice; choice that I did not feel free to make, without most people truly understanding what I have gone through and face. (And truthfully, I find a lot of advantages to a one-child family, for the child. So it is not all bad!) But in summary the hardest thing in my life so far has been dealing with the unknown of POTS and having to make decisions based on limited information.

I've been fortunate that I have recovered greatly from severe disability. I am quite thankful for that.

[Maiysa]

Good question...Yes, the worst thing. But I'm adjusting.

[icesktr189]

Oh I am definently not talking about watching family members suffer or die...I meant things that can happen to YOU physically/emotionally. If anything happened to my daughter or family, I understand it would be worse than POTS anyday. I am more talking about any diseases or life events that specifically happened to you

[icesktr189]

I think that is also the problem with this disease, is there are so many ends of the spectrum. I know there are some people who just have their heart race a bit and can work, drive,ect with minimal symptoms....then there are others who are bed bound and completely disabled. So of course for some, this illness is not going to be as bad to one person, than it is to another.

For me, other than the deaths of family/friends, it is the hardest thing. It has just taken so much and the complete lack of knowlegde from doctors makes it worse. If more understood I really think it would be a lot more tolerable. I feel like everytime I talk to a doctor, they think I am lying or exaggerating my illness. Also the depression and anxiety that comes with this... I guess just having the mental and physical all together.

[hilbiligrl]

I've been through alot.... and id say alot more than 90% of folks out there in the normal world.... just like the rest of us in here who have been through more than most out there..... but this disease(s) by far is the hardest i've ever faced.... and i face it every day, every hour for going on 9 years or more now..... it will always be the hardest to deal with..... as it begats so many issues that can triple and quadruple in so many manifestations: i.e. home life, family, friends, children, relationships, work, mentally, physically, socially, financially, and so much more.... and that's not counting the effects it has on the body..... it affects us in ways that people can't even begin to fathom, or even try to imagine.......

i hate to judge other people's issues and problems but i always come back to the thought that no one has been through stuff like this, unless they have this....... they will never truly understand how hard this is.....

[MomtoGiuliana]

I agree, Dani, that this is very hard. I feel like since I appear physically healthy, people assume my deficiencies have to do with personal failures (eg, won't exercise enough, lacking in gumption/initiative). I think I even internalize this.

So true Tennille that no one will truly understand if they have not experienced this.

[lissy]

The hardest thing for me to deal with is; no-one believing how bad I feel and that everything I do is a challenge. I guess I'm lacking encouragement and acknowledgement of the tasks I can accomplish even if I am only able to do it because of pure mental determination.

Also with most of my time I am sitting and thinking about (If I was healthy) what would life be like....sometimes it makes me happy and really feel like I will have a chance to truly LIVE again:) and sometimes it makes me so sad.

[bellgirl]

Life is a gift, but we were never guaranteed an easy ride.... As a nurse years ago, especially of childhood cancer, I have to say that that was the worst situation I have ever experienced in my life; taking care of suffering and dying children!! I have been blessed with two wonderful children, who are relatively healthy, my faithful husband, who takes me to the doctor, (although he doesn't completely understand what I am going through), he tries:o). I have wonderful friends, although I can't always be with them; God is my rock through this; I could never have survived the last 13 years without Him. I have accepted my illness, but there are still days that I don't do very well with it; I try to be positive, because we have a choice every morning to see the sun shining, even if it is behind the clouds:o) Life is unpredictable, but we were never in control of it, even before we were sick, (even though we may have thought we were). I don't compare myself with others, because I am an individual, and God created me for a purpose! I wasn't really sick until my early forties, so in some ways, I had a pretty full life, before I became ill. As a nurse, I have to say that I was very frustrated with my doctors at first, knowing something was definitely wrong with me, and they couldn't help me. Then I stopped going at all, after a neurologist thought I was crazy, which was a big mistake on my part. A few years ago, I developed horrible vertigo, without being able to do anything during those episodes, except vomit and stay in bed; but now after finally finding the right doctors, medication, and Cpap machine, my life is so much better. I'm not cured; somedays I'm sad about that, because mentally and physically, I would have so much to offer others. But then I found the internet and this site, and it has helped me immensely, because I can still help to encourage others and offer medical knowledge. I am very grateful to have some cyber friends, who truly understand my situation completely, and I am very grateful for the support I am getting through others on the internet...Thanks, Kim

[HopeSprings]

I am still a strong and intelligent person (POTS hasn't changed who I am on a fundamental level)-- but I rarely get to share my intelligence and strength with those I am close to, let alone the world. Because of both the physical, mental, and emotionally disabling aspects of POTS I feel completely trapped-- like a coma patient that still has all of the potential in the world, but all that potential is locked into a shell that keeps it from getting out.

I completely relate to this - TRAPPED is the right world. I find POTS so challenging because of the combination of physical and "mental" symptoms. The memory problems, cognitive problems, focusing and perceptual problems etc. are even more challenging than some of the "physical" symptoms. I'd take the racing heart, the weakness and fatigue over the confusion and disorientation any day. My disorder hit in my mid 20's -so I don't feel like I really had a chance to live yet - so yes, this is without a doubt the hardest thing I have ever been faced with.

[yogini]

It is hard to quantify what is the "hardest" thing I have ever done. That being said, POTS has been very challenging because it is not well known and hard to treat, and bc I got it at an age when most people r healthy. And yes, most people I know cant begin to imagine what it is like to have POTS or any other chronic illness. And it is VERY painful to listen to them whine about the common cold. That being said, some don't have enough to eat or live in places where people are being raped and murdered all over the place. They would probably love to be in our shoes. So I am grateful where I am.

[Clairefmartin]

Exactly!

I take care of my daughter everyday with POTS and still dont complain half as much as some other normal people do with children. I understand that they dont know what it is like to have a chronic condition that is disabiling, but it is hard to watch how easy some people have it and take it for such granted. I had people tell me that because I became a mom at a young age that it would ruin my future, but POTS did that way before I even had a child. I didnt drop out of college or quit my job because of my daughter, I did because of POTS. I know that I would be going to school and working right now if I didnt have this, and that is what makes it so hard.

I just wrote an article on my blog about this exact thing - called a year spent in a room not complaining. that title about sums it up. i defriended all the annoying people on facebook who whine, and stopped following them on twitter. my blog post actually helped some of my family understand what was going on more because i finally let loose and explained how miserable it has been, and the constant struggle with "it could be worse" vs "this *****". I definitely try and keep in mind that i don't have cancer, I am not dying, i do not live in a hut in Africa in a draught ridden area, etc....

But that doesn't make it suck any less. I was in my early 20's when this hit, and worked around it for many years and continued to live life, but since it has truely become disabling its been surreal. I can not imagine being a child or teenager and dealing with this - i thank God I was a bit older and really admire those tough kids dealing with this.

Anyways, Venting is healthy I hope we all feel better soon.

[icesktr189]

It is hard to quantify what is the "hardest" thing I have ever done. That being said, POTS has been very challenging because it is not well known and hard to treat, and bc I got it at an age when most people r healthy. And yes, most people I know cant begin to imagine what it is like to have POTS or any other chronic illness. And it is VERY painful to listen to them whine about the common cold. That being said, some don't have enough to eat or live in places where people are being raped and murdered all over the place. They would probably love to be in our shoes. So I am grateful where I am.

I totally agree that life could be harder, but I personally have never experienced not having enough to eat or any of those terrible things, and I dont thnk most of my friends have either (thank god!)... so for me, it definently is the hardest thing I have ever experienced

[icesktr189]

Thats the thing... I know I could have it worse and I am so thankful for my family and friends, but it doesnt make it any less difficult. The fact of the matter is, is that without this condition a LOT of things would be better.... pretty much everything would be. Parenting, going to college,ect and actually ENJOYING it to the fullest because you are not having to think about what your body is doing every second of the day.

It just irks me when I see people complain that when they went out to dinner it wasnt the greatest, when some of us dont go out at all. I used to be just like that too before this, and i wish I would have not taken it for granted. I think i regret that the most.. I would have done more while I still had the chance.

Thanks for listening Its great to hear from everyone... I guess after this week of dealing with obnoxious doctors, I have about had it LOL