Random Thoughts

[HopeSprings]

Ever have moments of clarity where you're sort of removed from this whole thing and you realize how INSANE this is? You know most of the time I'm just IN IT, racing heart, racing mind, dizzy, out of it, tired, just trying to function WITH the symptoms. I've just gotten used to it I guess (kicking and screaming all the way of course). But I had a very calm moment yesterday -as if I were looking in from the outside on my own situation and was like, wow, this is really crazy, normal people don't live like this - there has to be a way out. This really is not normal guys. Can anyone think of another disorder like this that causes SUCH extreme debilitating symptoms, but doesn't kill you? What IS this thing?

[sue1234]

I so understand. I've had POTS for five years, and for the first four it altered my life alot, but my mental energy was there. This year, I am trying to make it to whoever I need to get to to rule out some of the more obscure causes of POTS, and for the first time in 5 years, I'm starting to feel worn by it all. The doctors have contributed heavily to that feeling. I'm tired of being ignored, told to take an anti-depressant, and just plain given no follow-ups. That is what has really dampened my spirit. To know that we have the best health care in the world, the most highly trained physicians, and they are too busy to spend any thinking time with you. They are overbooked and insurance dictates what they can say to you or do for you.

I know, it is crazy. I absolutely hate not having an explanation for this. Something in my body got turned on, and I want to find out what that was and turn it off.

I also have a huge issue with low blood sugar, and yesterday I had a bad one. They are coming without hardly any warning anymore. I told my husband that if I pass out, to tell the hospital they have to check for a list of things---check blood sugar and cortisol right away. If I need any unexpected surgery, to be sure and tell them to monitor my blood sugar and cortisol, and remember, I have what could be a pheo on my adrenal gland, so let the anesthesiologist know! It's crazy.

I spend hours trying to wake up, trying to prevent low blood sugars, trying to get through the POTS lightheadedness while I shower and FINALLY when evening gets here and I begin to feel my "best", I can't wind down to go to sleep. All of this is so hard to manage, that I have a hard time enjoying any family social things. It is just too draining. But, a few times a year I feel alot better and do socialize, but not often.

I miss normal life. I would settle for a not-so-normal-but-functioning life, but I am actually wearing down. In the beginning, the doctor visits were lined up, with the next option looming. After 5 years and a boatload of doctors, my options are almost dwindled to nothing.

[lieze]

I am so there with you.

I feel like Alice in Wonderland.

[Sallysblooms]

I have had CFS for 20 years and POTS for 2 1/2. Before that, I had to have a vestibular (balance nerve) cut because a virus had destroyed it. Verigo constantly. Head surgery, terrible. SO, I have had problems for 30 years. POTS was a sad thing because I had gotten so much better with my CFS, then POW, POTS TIME....

I have improved enough to enjoy my life even if it is inside my home most of the time. I have a great family and hubby so I am blessed. I have been SO much worse so I am as ok as I can be with the way I am right now.

This is all crazy when you think of normal people, but I always remember how many people are as ill or much worse that I am. It is never easy though. I pray for all of us every night. Sally

[misstraci]

that is funny you write this because i've been really down and sad today but on top of that, i've been angry. i'm mad because i don't want to live like this anymore. everyday is such a struggle for me and besides my immediate family and few others, no one has any idea. its kind of like i'm living a lie or something. they see "me" but they don't know me, they have no idea that i struggle just to stand up, to walk around, to breathe, etc etc. Everyone around me is planning their careers and families and such and I am just taking one moment at a time praying that I can make it through, wishing that I felt even half way human. I am sick of POTS and I haven't had it half as long as most of you. I want my life back I hate walking around feeling like i'm going to pass out 24/7, its not normal.

[Lovebug]

O-M-G.....Naomi, I'm soooooo glad you started this topic as I came here tonight to pose a question to everyone. Given the obscure nature of this illness (and especially what causes it) are any of you reminded of how the HIV/AIDS epidemic was in the beginning where none of the doctors knew much about it and it was a big unknown? Well, I feel that way about Dysautonomia except they haven't figured it out and don't seem to care if it is on the forefront in the medical community. I realize that AIDS is deadly but even Dr. Nancy Klimas (world renowned doctor of CFS/HIV with over 20 years of experience) has stated that the debilitating nature of CFS (which I happen to think is a part of Dys) is the most severe she has ever seen, including her HIV patients. DOH: she said she'd rather have HIV than CFS!

And another thing....I don't "buy in" to the hype that this disease isn't deadly. Sure it isn't terminal, but no one can tell me this debilitating, (sometimes) humiliating, uncontrollable, and depressing illness does not have an overall affect on our longevity. Not to mention the fact that I "feel" like I'm dying everyday (even if I'm not). Truth be told, if I must live this way the rest of my life then I'm not quite sure how much longer I want to live. Some days are more good than bad but some days aren't. It's on those low days that I say to myself, "How much longer can I take this? I'm weary mentally and physically. I am tired of being a burden and I'm tired of people not able to understand what I'm going through".

BTW, I'm with Sally.....I pray for all of us every night! Hugs to all!

I realize the XMRV retrovirus has likely been disproven but at least she believes the severity of this:

[sue1234]

For some reason, I never cry. I mean, maybe once a year I do, but I just don't ever feel so down about anything that I cry.

Well, this thread did it! I reread everything, and just like MissTraci said, people have NO idea what we go through just to do normal things that before were subconcious. And I mean just taking a shower or trying to fix a sandwich. I am not one of the POTS people that can drive or work. I stay home everyday, by myself, and it gets old.

I feel like people think I am exxagerating my "illness". My husband and grown kids understand, but I am actually quite surprised by the lack of empathy from everyone else. Don't get me wrong--I would rather fit in a crowd than stand out. But, I find it odd because I live in a small town, that people REALLY reach out to the patients diagnosed with cancer. After being a "do-er" for mine and my husband's family for 20 years, and a fairly active community member, I find it disheartening that in five years only a handful of people have bothered to ask what happened to me. Makes you realize that all the friends you had were not really friends afterall.

I will stop! I'm officially on a rant and I'm going to quit.

[stacdliw]

For the past 8 months, I've been battling a daily pain disorder that neither my GI nor my neurologist knows what is causing it. I'm often beridden with the pain and housebound with the amount of oxycodone that I'm taking to relieve the pain.

However, I just told my brother tonight that I can handle this pain and many of the symptoms of my POTS, but it's the debilitating fatigue and brain fog of dyautonomia that affect me the most physically, emotionally and socially. I just can't explain it, but days when I soooo fatigued, my thinking processes are slowered, I feel depressed and unmotivated, and I could give a hoot about anything. Yet when I feel some energy, I'm no longer depressed, I laugh and make jokes (even about my condition), dig into the chores that have been neglected for days, weeks.... and most important, I feel myself again.

This summer has been bad. I've had more bad days than good ones. Here's hoping for a fabulous Fall!

[lgtaylor100]

I feel the same as the rest of you. I have been struggling with this disorder for 16 months now, 11 since I stopped working. So much of my life has been taken away. I liked working, now I can no longer do that. The fact that I recently was awarded disability helps financially but the fact that it was so easy to get makes me realize how really disabled I am. ( I was awarded it on appeal but by reevaluation, no hearing necessary.) I haven't had a good day since September, 2010. While I try to remain positive and find new activities that I can do at home, I still think often about my old life and how wonderful it was. I sometimes get out for an hour or two but come home exhausted. If I try to exercise very mildly, I pay for it the next day. I am not able to go places with my grandchildren, although I can visit for a few hours. My primary wants to put me in the hospital to figure out what is wrong with me. He doesn't believe that POTS is idiopathic and thinks something else is going on although he doesn't know what. I know that these hospital visits are frequently useless because once they know you have been diagnosed with dysautonomia they say all symptoms are indicative of that. My husband believes how sick I am, as does one of my daughters because she works in healthcare, but my other daughters and my mother do not get the seriousness and the debilitating nature of this, although the approval by social security disability does give credibility to my mom about what I am going through. One of my daughters still doesn't get it and thinks if I had a glass of wine every night that would solve everything. People have stopped calling. I agree with whoever said that those that have cancer get a lot of calls and attention, but people do not take this seriously. Well there is my rant. Thanks Naomi for starting this thread.I needed it.

[Katybug]

This thread really did come at just the right moment! Over the weekend, I found out while trying to pick up my prescriptions (you know...the ones that keep my blood volume up and my heart rate down...kind of, sometimes...) that my insurance company apparently made some sort of error and cancelled my prescription coverage. While they were being less than helpful in trying to fix the problem on Monday, I told the manager I was on the phone with that my illness causes me to have symptoms that feel like I am having a heart attack and a stroke all at the same time several times a day except I never die and it is made worse by stress. That finally made her become helpful and fix the problem and apologize. Then this morning, in the shower, I had an acute attack and my legs turned a shade of purple that just isn't human. I couldn't even feel a pulse in my neck but my heart was racing. I just didn't picture this being my life. I have had to spend the rest of the day on the couch and I'm pretty sure that eating will be out of the question today.

[Lovebug]

I'm so sorry for everything all of us goes through. I am thankful that I still function and work. However, it is miserable. I recently got a handicap tag so on "CHF days" (those are the days I have Activity Intolerance) I can park close, walk less, & sit more. My coworkers couldn't believe that I had it but I really think they realize that if my doctor takes it seriously, they should too.....and we're all nurses!!!!! I have 2 dysautonomia T-shirts and I wear them as often as I can. I just wish there would be more awareness out there!

[icesktr189]

I have gotten to the point that I decided to start smoking again.

It was a very hard choice to make, but honestly I would rather live a happier decent but shortened life, than a long miserable one where I am constantly depressed with anxiety attacks. I dont feel like im living anymore, but just trying to survive each day.

[sue1234]

Dani, I just told my husband yesterday that I ought to go back to my bad habits of 20 years ago--smoking, diet colas, etc. I ate pretty decently, but did eat sugary foods, too. I told him at least I was fully functioning. I try and clean my life up, and I get POTS for it. I know smoking has something to do with acetylcholine, something that doesn't seem to work correctly in me. Do you know or remember what it does? Maybe I'm mistaken, but it seems there is some "benefit" to smoking regarding POTS.

I hear you on the quality vs. quantity.

[icesktr189]

I know its a potent vasoconstrictor. I felt SO much better smoking. I quit when I became pregnant and everything when bad quick. When I was twenty some weeks I was so tired of being dizzy that I took two puffs and instantly felt better. I dont know why it works so well, but I dont even care at this point haha. I think you just reach your breaking poiny, and if it means I can drive and live a somewhat decent life, then ill take it!

[Dizzysillyak]

I hear you're frustration ... I get so angry sometimes at how our medical profession isn't making progress at the rate of other industries. Cell phones, laptops and thin televisions are here because of intense competition to be better than the others. It would be great if the same could be said for the medical profession.

15 1/2 years of getting no where with traditional doctors is why I'm so convinced that functional (alternative + traditional) medicine is the way to go. I see an integrative doctor so I get the best of both worlds ...

My approach is a little different from most though because I'm always looking for the root cause of my symptoms. Diet first, because we are what we eat ... then supplements as needed. I was a computer programmer analyst so taking a top down / get to the root cause approach is natural for me. At one point in my life, I had a brain ... lol ...

tc ... d

[Stace915]

Feeling like Alice in Wonderland is a great way to explain it. I guess I am one of the lucky ones...at this point I am able to work full time and drive, I still have a lot of days that I am not up to driving, or working and still have episodes almost everyday.

A little while ago I tried to walk the dog with my boyfriend. We didn't walk very far but I kept complaining of the heat, he insisted as usual it wasn't that hot, it was my body. It took about 25 minutes for me to make it back to my house, and we didn't even walk a full block. I made it back and collapsed on the couch, drank a gallon of water and some pretzels and now I am feeling a little better, like I am back inside my body.

At work on Friday I went to a meeting that involved standing for an hour. I was not going to go, because I knew I couldn't stand up for that long but I didn't want to have to explain myself to everyone. I have a few co-workers who are aware of my medical issues so one of them stood next to me and kept finding places for me to at least lean against the wall. Well of course not even a quarter of the way into the meeting my heart was racing, I was drenched in sweat and having trouble breathing and my vision was blurry. My coworker saw that I was starting to go downhill and told me to get out of there asap and sit down. I snuck out the back got some ice water and sat down for a while. I eventually made it back to my desk and was wiped out, got a ride home from work and was asleep on the couch within minutes of getting home. All I kept thinking was, it's not fair...no one else has to worry about if they will be able to stay upright during this meeting. No one (other than the one coworker that I am so thankful for), has any idea that I am totally stressed and fighting my body to not faint. No one has any clue what I am going through! It's not fair, why do I have to have all this added stress and everyone else gets to stand up for an hour and not feel anything abnormal? It's kind of sad but sometimes I forget that things like standing or getting dressed in the morning doesn't affect everyone the way that it effects me.

Edited August 29, 2011 by corina
removed the quoting

[Sallysblooms]

SO many things are nutty about this. I have CFS also, POTS is often a part of it. POTS is CRAZY. My son and his wife were here and I kept asking them if they want an ottoman so they can put their FEET UP! HA, they didn't. Not EVERYONE needs that. I have mine up in my super fab recliner all the time.

Also, I keep telling my hubby when we go out to eat, etc. HOW does that person stand all day! That is impossible!

You know our bodies really are a miricale. Fighting gravity is HARD. We all know that.

[corina]

sallysblooms, you really made me smile! like you i'm always worried how people can stand that long, walk that long, can stay without a drink that long. and i'm almost forcing them to sit down when i think they are on their feet too long. amazing how we adjust to our own situation!

now that i'm doing better i worry less about others, which is more normal i think but reading what you wrote about the ottoman really made me think back and smile!

corina