EVERTHING

[gdomaracki]

The more i learn about this illness, the more i die inside. My hopes and dreams of enjoying my life are being crushed. And i almost don't see a purpose living like this. For goodness sakes, im ONLY 19 years old. I had my whole life ahead of me~ and now its G O N E!!!! Worst of all, how am i supposed to find someone to marry and have kids when i can't even take care of myself. I don't want to drag anyone down to the **** that i'm now living in. i feel like this is some sort of punishment~that i don't deserve. knowing that im never going to get better makes me not want to do this anymore. i just want to give UP!!!

[MightyMouse]

Sorry you feel so badly...

but you should know life isn't gone. It's just different. Personally, my life is very happy and fulfilling despite having this stuff since birth. 41 years and I wouldn't give up a single moment.

I strongly suggest you get help, such as a counselor who is accostomed to treating people with long-term illness/chronic illness. Depression doesn't typically go away without help of some sort, either therapy, medication or both.

nina

[dawn]

If this was from a viral onset or happened suddenly I wouldn't worry. Most recover within 2 years. I don't know your history. But Mayo clinic and the NDRF conference doctors feel this way. I think I have had POTS since I was born!!!!!!!!!!!!! I worked full time until I was 48. I had a year off when I was 37 and diagnosed. At age 50, this is the first time I feel like I don't have the fight for this illness anymore. My life was hard when I was younger, but I had a vision. I had 2 difficult pregnancies, went to nursing school and basically just pushed myself to my goals. Don't give up, fire up and get mad. Don't allow this illness to take away your dreams. Draw a line in the sand and say NO MORE, then go for it. I fainted, I vomited, I dealt with extreme anxiety all my life. It is surprising what we can do when we just say no, I will not let these symptoms rule me.

Dawn

[Michelle Sawicki]

Ditto what Nina said. I'm very happy with my life, and I feel A LOT better now than when I first got sick and was bedridden. Living with a chronic illness can be a huge adjustment though, and I second the counseling advice.

Michelle

[MomtoGiuliana]

No--there is no reason for you to expect that you are never going to get better and that you will have continued disabling illness the rest of your life. Yes, you may need to make adjustments, no you do not need to give up ANY dreams. I think I have had POTS since my early 20's. I was bedridden at age 33-34. Now at 37 I am working again, I have a beautiful daughter, a loving husband. Last summer I hiked in the Rocky Mountains. POTS did not end any of my hopes and dreams. There are medications available that are likely to help you improve--as well as other things you can do--exercise, increased fluid intake, etc.

Counseling may be helpful for you--I also encourage you to pursue that.

Take care,

Katherine

[Jacquie802]

Hey, with POTS there are alot of ups and downs. Why do you say you are never going to get better? Have your docs told you that?? If not, then don't think that is the deal. When I was first diagnosed with POTS my arrhythmia was bothering me more, then I got it fixed and I was fine for a few months. My POTS got worse as time went on, but I have no reason to believe I am not going to get better. The POTS came on suddenly, the docs aren't sure if a viral infection caused it or what. I know sometimes it is hard, but you need to try and keep a positive attitude. If you keep thinking you "can't" do things, then soon you are going to believe that you really can't. You just need to change the way you do things a bit, and yes some things you may not be able to do now, but unless your docs say you aren't going to get better, then believe that you are and that you can do all the things you want to do some day (hopefully soon ).

Jacquie

[Ernie]

HI,

I agree that you should have councelling to help you deal with living with a chronic illness.

[morgan617]

My life could be Dawn's. I have been sick since the day I was born, have 2 great kids, my 25th anniversary is next month, I was a nurse for 29 years. There are good periods and really bad ones.

My son is 24 and got arthritis at 11. He has inflammatory bowel disease, hyperparathyroidism, migraines and takes about 24 pills a day. He worries about getting married and having kids too. But there isn't a day that he feels life isn't worth living.

He takes antidepressants and gets counseling as needed to cope. This junk is not fair, no matter how old you are, or when it started. We all have days where we wonder how we can go on, but we just do.

I think the majority of us are in therapy and I don't think anyone would say they don't benefit from it. Some times we let it go till we can't even think to ask for help. If you don't have a therapist to help you cope, then I highly recommend one. You will feel better. morgan

[d4g7]

Hey Blondie,

I'm sorry to hear that you are having such a hard time - I also have had days where I can't see the point of it all, but then I tend to feel better the next day etc.

I find I get extremely depressed when I am symptomatic.

I see a Psychologist either once a week, or once a fortnight. He is well versed in POTS, and it's great to be able to vent, and say exactly what is annoying you about this condition - and they are helpful, as they can offer solutions, or even if it's get to validate your feelings etc.

If you get a good one - you can normally call them on their mobile if you need to - I've done this only once before when I was so ill and so despirate for someone to understand me. I called him, and he came to my house. As a side note - I've been seeing him so long, and had similar upbringings that he only charges me for every second visit, and that's at a highly discounted rate - It's well worth the money.

I try to not think POTS will be with me forever, although, I know when you are ill, it can feel like it will last forever.

Some changes to your lifestyle can make all the difference - do only things that you can do. If you need rest, go and have a rest.

There are still so many wonderful things you can do, and we all just have to accept that there are certain things we can't do. I know for myself, it's the feeling of now not be able to do something, like climb Mt. Everest - I would have never done it anyway, but now I know I can't (if that makes any sense).

Take care of yourself, and every now and then, take time to stand back and gain some perspective. Reward yourself for your accomplishments, no matter how small.

Believe me, this dreadful feeling won't be with you forever.

All the best.

Daniel

[gdomaracki]

Thank you everyone for your advice. I think I just need to vent and until i can get health insurance, this is the only place too. Especially because you all understand, and its only been a week since I was diagnosed. Thank u all again!

[shelby]

I feel your pain. I got sick at 17, two weeks before my senior year of high school. Lost everything, my friends who thought I was crazy, my fiance, then another one. Thought I would be stuck in the suck rut forever. I finally had a break down which lead me to a psych. and then to a doctor who shed light on my situation. I urge you not to let your depression get that bad.

It is hard, but for me that was 7 years ago, can't believe that when I think about it. I am back in college, met a man who loves me for me, he had a harder time when I got better then when I was sick. There are men out there who dispite all of this will look past it all to find who you truly are. I know, I had to go through all the bad ones to find this one. Don't give up. My psych said to me once "if people who are going through what you when through aren't going crazy, there is something wrong". It is just nice finding the right counselor to talk to. Sometimes talking to friends just doesn't help, and sometimes it is the best thing. Hope things get better soon.

Shelby

[OCsunshine]

Blondie,

Please don't feel hopeless! Like many others have already posted, we live with this condition every day and our lives are full of hope and wonderful-ness!

I became ill suddenly at age 13, and I am now 25. Like you, I also wondered if I'd ever be able to find a spouse who would deal with this chronic illness, if I could ever pursue my occupational dreams (working with disabled children), and if I could ever feel 'normal' again and have a real life!

Well today I have a wonderful and loving and supportive and ADORABLE husband! I get to help disabled children on a part-time, no-stress basis. And I do have a real life- am active in my church and my husband and I help lead our youth group.

My life is very fulfilling and BECAUSE I have this disease it is even MORE fulfilling! I never take health for granted. When I feel well, I enjoy each day to its fullest! I don't complain a lot because I know that even when I think I have things horribly bad, I turn on the news and see a ton of other people that have it MUCH worse than I have it.

And because of getting this illness, I now have much more compassion for people with chronic illnesses. I am not quick to judge- I am quick to get educated and understand. I love having this extra circle of 'friends' that are JUST LIKE ME!

So things will get better... keep posting on this site... and get a counselor that can help you talk stuff out.

With care and concern and HOPE!

-Rachel

[Guest Mary from OH]

Blondie-

You're right!! Your ARE 19 years old!!! Pull yourself up by your bootstraps, find out what you need to do to help yourself feel better!! What is your current level of funtioning? Are you taking any daily meds? Are you drinking lots of water and/or gatorade? Are you using lots of salt? What about compression hose? Are you educated about POTS and seeing an electrophysiologist that specializes in POTS?

If you don't know the answers to the about questions, then young lady, you have some homework to do!!

Take charge of your health!! Don't let it take charge of you!!

There are many things you CAN to to help yourself feel better. And yes, you will have good days and bad days. We all do!! So does the rest of the world!!

Welcome and dig in and don't let the "shock" of being diagnosed take over your life!! You are woman, let me hear you roar!!!

[Wufflebear]

I too have had autonomic problems since I was very little (like 3 or 4 years old.) It is VERY hard. I was bedridden from age 16-18! I wondered if I would ever find a husband and have children and have a job and feel worthwile...

I did. I pushed myself. I decided that since this is chronic (btw I did not have a diagnosis till I was 31) obviously and I was going to win. I have to give myself lots of slack sometimes. I have to be easy on myself. Ie: I am not a work a-holic, but then that is ok with me.

I now have a husband and a little girl and live in a house overlooking the ocean on the oregon coast (I always dreamed of that) and I have a job that is programming/teaching etc , which I also always wanted.

It is still hard and I still have it, but it will be ok.

Get more help if you feel you need it ok? And just know that IT WILL BE OK!!!

[Kitsakatsa]

Let's talk romance!!

I can see your point on the "no one in sight to marry" point. I didn't want to get married because I was having so much fun being single, going to school (I have 2 master's degrees!) and working good jobs with money. I had a fun social life.

Then I decided that it was time to find someone and BAM! Pots! So I hear you on that. But things get better. YOU ARE SO YOUNG! I am much better than I was 2 years ago and 2 years seems like an eternity, but it is really just time that you get to spend on yourself.

My social life has tamed down quite a bit, but I still have one. It may have delayed finding someone to marry by a few years, but I am extremely proud of myself for handling this illness and I will end up being a happier and more capable person when I find my husband- even if I still have POTS.

You will find yourself changing for the better, my dear. Someone once said "pretend that you will find the love of your life at age 30. Live your life to its fullest until that day". What will you do?