Another Venting Post... Sorry!

[icesktr189]

Ahhh I just need to get this out of my system before I burst, and I thought this would be a good place

I have tons and I mean TONS of friends who are pregnant right now. I love seeing all their little updates on ultrasounds and everything like that, but if I hear one more complain about how hard pregnancy is I am going to flip.

Dont get me wrong, pregnancy is not fun (been there, done that) but seriously most act like its the end of the world! I try to keep my POTS illness to myself but I randomly post status updates on facebook every once in awhile. However, there are many women who are constantly complaining about how tired they are or how nauseous they are. I hear "Oh I have been nauseous for almost 4 weeks now!". Seriously, I have been nauseaous for almost 4 years now.

Yeah I know that this is not fair because most have not experienced a chronic illness, but I would give ANYTHING to just be sick with pregnancy related issues at this point. I thought pregnancy was a walk in the park compared to dysautonomia.

I even had one girl tell me that you wouldnt believe how tired she was from being pregnant. Well actually, I bet your bottom dollar I do. If you cant tell, I have some resentment built up. Of course I am taking all this out on wrong people, but its just been such a fricken hard month and its so hard to not have most of my friends understand what I am going through. I just get tired of hearing how horrible their lives are when I would give anything to have that

Sorry for the incrediable childish post and no offense to any pregnant women I am happy for all them, just really hard right now.

[misstraci]

Vent away! Anytime.

I think it's perfectly normal to feel this way, I know I do. It's just irritating that we live day in, day out with such debilitating symptoms yet some people have no idea, they don't get it, or we just don't complain and talk it about all the time. When someone around me has the sniffles/head cold or something like that and they are acting like such a baby about it, I feel like slapping them sometimes seriously. waaa waaaa waaa you poor thing!!!! But I totally understand your frustration and why you feel the way you do and also, no offense to pregnant people (been there, done that also) some are really annoying and thats all they talk about, I am so happy for you and your new adventure but I don't need to hear about it every single day, blah.

Dani, I hope you are feeling better today!

[hilbiligrl]

dani~

I dont you need to apologize for anything. These same thoughts go through my head as i read fb statuses myself. Yes, the nausea one, hit the nail on the head for me. NOTHING, and i mean NOTHING helps my nausea and vomiting... it is every day..... all day long...... sometimes i can't move, sometimes im bent over from it... sometimes its so bad that i could croak..... we've tried all meds, nothing works for me..... and mine, like yours, has been going on for a good 4 years..... i remember, when i could work, having to lay in the floor of CVS pharmacy (i was a pharm tech for a few years, while studying pharmacy).... i would have to literally lay in the floor for an hour at times at work due to the severe nausea.... i would be in tears and everyone, including myself, was like, 'what on earth is wrong with you?'.... and of course, at that time, i had no idea what disease i had been battling for many years.

I've needed to vent for a long time. Im sick 24/7...... it's so unbearable at times that i want to explode. I read on fb too where a few posted how tired they were..... and im thinkging..... you have no clue as to how severe exhaustion can be with this disease and it's my number 1 symptom that is ever present and im always fighting. Every hour is a battle and im so exhausted. I want to do a million things and can't even accomplish one due to being so sick.

But, i do try to be nice and understand others are sick too and our disease is very unfathomable to others who don't have it. Honestly, who would truly understand how sick we are, how sick we get, how horrible this all is, if they don't have it? I want to jump in my truck and go.... work..... do things with my kids....... but i can't...... 2 years into a deep potshole of small remissions of maybe 2 days here, a week there..... a few weeks here.... and i still can't come to grips with all of this.

Sigh...... makes your whole understanding of life and God quiet distorted sometimes......

hope you feel better dani..... i sure feel your frustration tenfold, as every day is a frustration. I used to be hopeful of the good days, but then i have a few and then its like a cruel teasing joke after a day of few of good days, to wake up to the aweful sickness again and im like 'oh yea, i forgot i was sick, i forgot i only have a day or two of good days'.... it's like a 4x4 being slammed in the face.... and im reminded again of how sick i am, and nothing can seem to be done. yet, i am still thankful for those good days...... on those good days, i am shocked at all the little things that im able to do, that people never think about.... such as standing in line, grocery shopping, going out with my children......

i better shut up or i'll babble on forever.....

peace be with you dani..... we all need it in so many ways.

much love to everyone

tennille

[Brye]

I had a similar moment recently and had to really focus on being sympathetic. It was just an innocent FB post and this particular person was complaining about having to take a medicine for 10 WHOLE DAYS, and to top it off, EVERY 12 HOURS. Seriously!!!

Brye

[sue1234]

I so understand you all. On top of feeling that way about others, THEN there's the guilt of feeling that way about others!!!

[bkweavers]

To everyone, I CAN SOOOO RELATE! I'm the mother of a teen with POTS and I can't tell you how many times I felt like slapping someone when they would complain about the little things. Sometimes people would complain about having to run their teens to all their activities and I just wanted to say to them how blessed they were to have a healthy, active child! I myself suffer from neck and back pain and continuous migraines and I even stop myself from complaining too much after all my daughter has had to endure.

I can also relate to what you were saying about the pregnant friends. To this day, I get so sick of people complaining about being pregnant. My oldest daughter was born at 26 weeks and we nearly lost her. (She's the one with POTS.) When I was pregnant with my second daughter, I spent 5 months on bedrest. I loved being pregnant and yet, it was very hard to not be able to do anything. I knew it was only short term though and it was worth it to have a healthy, full-term baby. I loved getting big and pregnant!

Anyways, I think it's very good to vent and sometimes you just have to get it off your chest! This is a good place for it. Everyone on here has been there and struggles daily. People who have never been sick long-term just can't understand what it's like. I just wish those people would try a little more to put themselves in others shoes and have a little more compassion and understanding.

Brenda

[icesktr189]

Thanks everyone!!

I thought it would be better to vent it here, then accidently flip out and write one of them LOL. I have one friend who has migraines with her pregnancy, and she is seeing a neurologist. She constantly writes how hard it is goign to her OB and neurologist and how having two specialists is crazy. I have what like, 6 right now? I see them almost every week or at least every other week. It is just so hard to even try to feel sorry for them because of what we all go through everyday.

I also have the problem of comparing myself to normal people. I see status updates of how they took their two kids out to the store, came home and cleaned the whole house, baked a homemade dinner from scratch and still have the energy to go see a late night movie with their husbands. Im like, well I got out of bed today and took care of my daughter for four hours...felt completely horrible while doing it though.

I think that is what makes me feel so alone and aleinated. I cant relate at all to my friends anymore. Maybe I should find a different age group to relate with...hmmm any 90 year old wanting to hang out

teachr4k- Wow i am so sorry your daughter has to go through all that. That is the one thing I am VERY happy about is that I have it and my daughter does not have to suffer with it. You seem like such a great mom! I couldnt imagine having a baby at 26 weeks. I cant stand when woman say they want to deliver and they are only 30 weeks pregnant. I was miserable at the end, but I knew that my daughter had to stay in!

I hope everyone has a good week and keeps their spirits up!

[MomtoGiuliana]

I can so relate to what you are feeling. I was really sick w POTS during pregnancy and a year afterwards. Hearing anyone complain about this time period annoys me too. It's hard for me to understand how pregnancy can be difficult for anyone who is well, and I feel like they should be grateful that they are healthy! I know what you mean by feeling alienated. It's hard for healthy people to relate to the sick, at any age, but especially when young.

I think Facebook is a really difficult medium too, for good communication. People use it to show off the positive side of their lives, or to share only snippets of life...in any case, it may not really accurately portray all their true feelings, challenges, etc. I "hide" my annoying "friends" on FB--anyone who complains about petty things, judges others, boasts constantly--they are off my newsfeed!

[sylvan]

Hey Dani, I feel for you! As I just recently got pregnant, I found it very odd how people kept asking me, "Are you tired?" And the answer had to be that yes, I was tired, but I honestly couldn't tell a difference from before! Now a couple months down the line I can tell that the pregnancy appears to have shifted things down the bottom of the energy cycle: "good" days are like "medium" from before, and I can have "bad" days that I'm a notch more tired than I remember being consistently.

Another odd thing is how it's suddenly become "acceptable" to be tired/sick/etc. Just this week one of my bosses (the only one who knows as of yet) offered to spell me for part of a particularly arduous task coming up in a few weeks (we have two days of rapid-fire 15 min meetings from 8:30am-6pm with a short lunch break) if I thought I'd need it. My initial reaction was that why would I need help, as I've always done it before even though it's horribly exhuasting and I need to stash away snacks and put my head on my desk for most of the lunch break, and no one ever offered help before. Then I realised it was because I was pregnant, and I was expected to be tired! Oh.

I'm wavering between enjoying this new-found soliticousness for at least as long as the pregnancy lasts, or going on as I always have before out of principle's sake -- if chronic sufferers don't get help, acute ones shouldn't be especially entilted to it. (I wonder if that is part of it -- people can imagine being helpful for a limited period of time, but figure it's the person's responsibility if the issue will always be there? Maybe even subconsciously if they don't think that all out...)

[MomtoGiuliana]

Good point! People are comfortable with and understanding of what is "normal", not necessarily with what is more unusual (chronic illness).