Frustrated

[Stace915]

Usually I deal with living with a chronic illness pretty well, but after missing an entire week of work and being in bed for 6 days straight so exhausted and fatigued that I could barely lift my head I am really having trouble staying optimistic.

It has been a little over 3 years of this nonsense. I have had some months where I feel "ok" and then some where I think I am going to die because I feel so terrible but lately I can't help but dwell on the negative and the things that I am not able to do in my life. My best friend just got married and I think being a part of her wedding really upset me, I tried to dance at her wedding and of course got so lightheaded and my bp was so low that I had to sit down right away and basically layed with my head down on the table chugging water until I felt semi normal again. I can't help but think that if I get married I won't be able to dance at my own wedding, I won't be able to stand for pictures, I won't be able to go on a honeymoon to the beautiful tropical island that I have always dreamed of because I can't tolerate the heat. I KNOW that there are people out there who are a lot worse off than I am, and I should be thankful for what I have and that I don't have a life threatening illness etc... but I am sick of people saying that I could improve and look how much I have improved all ready since I was diagnosed.

The truth is yes I have improved and I have also regressed and its been an ongoing pattern... and although it would be wonderful to improve more than I have I honestly don't think its going to happen and for once I just want someone to be honest with and say, you know what you're right- chances are you won't get any better and it *****! Plain and simple it ***** and its not fair!!!! At 27 years old I shouldn't need handicap parking and miss weeks of work at a time and have to worry about having enough money to pay for my medication, I shouldn't have to worry that me not feeling well limits my boyfriend or family and friends from doing things that they want to do because I don't feel up to it. I shouldn't have to worry that I can't have a child because there is a 25% chance of me passing on this stupid illness we all call POT's and a chance of me also passing on Ehler Danlos syndrome. If I have all of these issues at 27, I can't even imagine what I will be like at 60, 70 or 80. IT'S NOT FAIR!!! I want to spend my summer enjoying the nice weather, and do one of my favorite things, laying on the beach and not make plans all time and with the stipulation-- as long as I feel up to it. I don't want people to say find new things that you like to do, and tell me that they understand how I feel when I say I am exhausted because truth is very few people actually understand. I don't want to hear "well at least you look good" one more time, I know its meant to be a nice thing but it makes me want to scream!!! I want to be able to not worry that an hour air plane ride is going to make me feel so awful that I need to sleep for days after to recover!

Again yes I realize that I am lucky to be alive and not be as sick as I could be, but you know what now that I have realized that and have a better appreciation for life, isn't it time for me to get better and get on with my life???? I am having such a hard time understanding what I did wrong do deserve this and why anyone of you on here has to deal with this, yes what doesn't kill you makes you stronger but you know what, at this point I am strong enough. I don't want to play anymore.. I surrender and throw up my white flag, I do not want to deal with any of this anymore, I want it to go away. I want to trade my poor health in for that of a healthy 27 year old!

Before someone asks, no I don't see a therapist and I have no interest in it. I just needed to vent to people that would actually understand. Thanks for listening (reading) my rant!! I hope this finds everyone in good spirits and health

[pat57]

I heard that.

Pat57 is me, born in 57, and there isn't a day that goes by that I don't realize how lucky I am that I functioned at a normal rate til around the age of 40, by then

I had my children (although one was just 4) and a husband who paid the mortgage for the 4-5 years that I couldn't work.

I was lucky.............

[Maxine]

Like Pat57 I functioned at a normal rate until age 41. I was born in 59 and felt fairly decent until Dec. of 2000---(D-Day), the day that life as I knew it died. I had some minor problems in the 80s and 90s with what I thought back then were panic attacks. In 1990 I went on a beta blocker, and I still take it. However, my only symptoms up until Dec. of 2000 were tachycardia, and occasional adreneline rushes, and mild chronic fatigue.

In Dec. 2000 I crashed. I feel bad for you younger folks who are getting robbed early, but maybe you'll have a better chance of getting to a more functional state. It's hard to tell, as this disorder in not predictable, and if you have EDs, or some other health issues, it makes things more difficult.

I DO see a therapist on and off for all the things that I have been robbed of, and for the continuous ignorance, and unethical treatment I still get sometimes from doctors. I go every month to six weeks to help me keep my head screwed on straight.

I worked until April 2001---(but I was off for a month in March of that year). I was very, very sick, and couldn't get out of bed. When I went back to work in april, I couldn't function, and my GM signed a lay off slip. (That's a story for another day)---as his boss was trying to get rid of me since I got sick thinking the chemical fumes that seeped into the front office may have made me sick. NO QUESTION-----IT WAS A TRIGGER.

After surgery on my cervical spine in 2002, I felt a little better, and I went back to school for a year so I could change course from a commercial collections manager/office mgr., to medical coding and billing. However, while going to interviews in late 2003, and 2004 I was getting tired just from that. I finally decided to file for disability in 2004, and received it 3 years later.

Your young, and if you have good doctors, and good management of both your POTS and EDS you could do OK.

I fully understand your need to vent, and keep venting away----this is what the forum is for. Pace yourself, and don't take anyone's you know what. You do what it takes to make YOUR world spin better. I didn't do this, and worried about what everyone was thinking. Sure I still let it get me sometimes, but as a wiser human being I'm learning to take care of myself better. If you avoid the things that stress you the most it helps avoid those potsy crashes.

I hope things improve for you, and I pray your able to live life to the fullest possible while dealing with two chronic illnesses.

HUGS,

Maxine :0)

[firewatcher]

Let it out. Everyone here knows pain. It is NOT fair, and it never will be, but if venting makes it better, do it. I will listen, empathize and offer what I can, as will everyone else here. We are here for you, just don't give up hope! Tie that knot at the end of your rope and swing...if you do it upside down, all the blood will rush to your head and you'll feel better!

Much support.

Jennifer

[mom4cem]

I'm now 42. Think I've had this off and on since I was about 17. It has waxed and waned over the years, different diagnosis but in 2004 I became worse. I mean new and forceful symptoms came on. Tachy seeming out of nowhere, exercise intolerance, foggy head, lightheaded and so on. I still wonder what the future holds. I have a husband who is good to me and understanding and 3 kids with which each one I had symptoms but not as bad as I was going to get later.

It's stinks to have to find the upside of this all, it sometimes is very hard to see but I do enjoy the days that I feel semi-normal. I've gotten past the point of wishing this all to go away, takes up even more energy. So I try to make the most of the semi-norm days, keep plugging along with work when I can and try not let it rob me of everything. If I gave up, it certainly would take everything else away.

I would try to not let it rob me of the thoughts of marriage and children. One step at a time. Even if your significant other has to hold you while you dance at your wedding for your song, for me at least, it would be better then never having tried to dance at all.

Hang in there.

[momofsara]

I totally can understand where you are coming from. Sara is 29 and has become almost bedfast in the last 6 months. Her condition has declined to the degree that she doesnt leave the house except to go for doctor appts. She also is so frustrated and actually angry at times. She vents to me often and feels as you do --that its just not fair to have all this going on and to miss out on so much of life at such a young age. We also had to leave early from her best friends wedding several months ago--her friend said she would want Sara for her matron of honor, but wasnt sure she would even be able to attend the wedding. So she was excluded.....We had to leave at the start of the reception because of her continuing pre-syncope..... She didnt want to create a stir by fainting .. So by all means, let it out and know that we here will understand and not judge you. This is the best place for someone dealing with the problems of the dysautonomia monster. Anyways, just wanted to add my 2 cents worth. Heres hoping for a better day for you and also hoping for some brighter happenings in your life.... Gentle hugs and caring thoughts------- Susan

[Stace915]

Thanks everyone, I am TRYING to stay positive and praying that the good days out weight the bad.

[hollie]

I, along with everyone else here, understand what you're going thru! I too find that venting here helps. I have few people I can vent to in my "real life". My husband will listen without complaint when I need, but I don't want to burden him too much. He's had to work about 75 hours a week since I can't work full time anymore. I'm home with our kids and they're sometimes more work than actually going to work. Then he gets home and the house is a mess because I'm too tired to clean up after the kids. He didn't sign up for this either! I'm only 29, so I feel like I've got a long way to go in life too. I wonder almost daily what my life will be like in 5 years, 20 years, etc. I've had the same "it's not fair" attitude from time to time. My attitude is (trying) to get better and most days it's working to some extent. Yesterday was a bad day for me. It was about 90 degrees out and humid. I wanted to do absolutely nothing but had a list a mile ling of things to do - none of which got done.

Anyway... vent all you want - I wont think poorly of you or your attitude. Sometimes we all just have to get it out. This forum is my therapist! And it helps me almost daily! We will be much more sympathetic than a therapist anyway! Take one day at a time and try not to dwell in the future too long. The past is over... the future is unknown... and now... it's a present!!

Here's to the ventors and the venties....

Hollie

[Radha]

i totally and completely understand your feelings, so so often i ask myself ok, i have learned all i am going to learn, enough is enough, i have been sick since i was 15 and i am now 32! i have never dated, never learned to drive, never had a job, never done anything! and i only slowly getting worse as time goes by, whatever you are feeling, you have every right to feel, this is so so unfair and there is no logical explanation for why we have to suffer so much, so i try hard not to dwell on the whys because it will just drive you deeper into the depression and despair, just know that we are here and understand, and i really hope you get some relief soon

Radha

[sheba]

Totally understand......

[StaceyYount]

I sooooooooooo hear what you are saying!! I got sick 2 months after I got married and all my friends got married after me or had the kids or have jobs or have and can do thingssssssss so many things I wanted to do and somedays it just makes me crazy!

It is soooooo hard I know and I just wanted to say you are not alone! I just try and get through those times let myself mourn and eventually I will get back to my hope and day to day living.

Hang in there! I hear you and sooooo soooooo understand! Sending you support!!

Stacey