How Do You Cope?

[bmahaney214]

I'm 16 and have been suffering for two years. Sometimes I just get so frusterated! I feel like I'm loosing "some of the beat years" of my life. I feel so alone somedays, I feel like no one, except others with POTS, can understand what were going through. I have 4 siblings and they get frusterated because I need more attention sometimes, or I need special treatment sometimes. We go through a lot everyday. When I wake up, instead of being able to go to school and worry about social problems, I have to worry about what kind of day it will be, a good or bad one, and weather I'll be able to do anything at all. I had to stop attending school. I've barely left my house in three months. Now I'm starting to even fear going out and not feel well. I hate all this!

Up until now I've kept these feelings to myself, I've felt like aknowledging my saddness, frustation, and fear wouldn't solve anything. Now I just want to know how all of you get past these feelings, or if you have.

I've typed this on my sisters iPod so please excuse any typing mistakes or errors as it is hard to write long messages on here.

[sue1234]

All I can say, Brynne, is I can empathize with you. I know what it's like to be pretty much homebound. BUT, I am 51, and I didn't get POTS until I was 46ish. So, I can only imagine how alone you feel at your age. There are other kids on here who have the same issues, and hopefully they'll chime in to give you their perspective and someone who can understand what teens go through with the isolation.

[RockiesGirl]

Brynne:

I'm so sorry you are going through this. I can imagine at 16 how difficult it would be. I am 39 and was diagnosed this year, but the worst symptoms have been in the last few years. I think I have had some form of it all my life and can sympathize with not being able to go anywhere and do the things you love. All that I can say is hopefully you will 'grow' out of it or you can get on some Meds that will help it be bearable.

We are always listening if you want to vent ;o) Try and have a good weekend!!

[misstraci]

I'm sorry Brynne! I know the feelings you're having and going through, except instead of not being able to attend school, I've been having trouble attneding work. I know it's different, but it is similar. I have good and bad days, however the good are like 10% and the bad 90%. You never know until you wake up and then even then, each moment and hour can change at the drop of a hat. My heart does go out to you because like you say, you are in one of the best times of your life. I am 27 and instead of being able to enjoy my young adult life and my baby like others my age are doing, i'm having to have help with the miniscule things and hoping i can get through each day, etc.

so, i wish I could help you or give awesome advice but I guess i'm moreso saying i can relate and don't feel alone because we understand you and part of what it's like. and i do have all those feelings you have and to deal, i just remind myself that yes things suck for me but at the same time, they could always be worse! Also, suround myself with things and people I love

[roxie]

Hi Brynne, I wish I could give you an answer but I

dont have one. I do emphasize with you how feel though. Ive had POTS since I was 12 & it's rough, you feel like everyone is passing you by and all you can do is get out of bed in the morning. Actually just before I read your post i was thinking "these should be some of the best years of my life" and I'm 25.

My best advice is to cry when you need to. Use the little energy you have on things you love. Do you best to keep good friends around you. And if you have someone you trust don't be afraid to talk to them about it. A lot of times talking honestly & crying with someone really does help.

((hugs))

[songcanary]

Bananas,

I totally agree with your advice. My husband ended up with an acute hospital visit when I was just beginning to feel better. The stress set me back big time. Weakness, nausea etc. My wonderful neighbor (who is 80 yrs old BTW) came over and assured me that he would understand if I only visited once a day. Which is what I did. And he more than understood.

It made a lot of difference to have my neighbor listen to me and give me such good advice. So I hope you have someone you can confide in. I did not realize how helpful she would be, and now I thank her every day for that visit. Hugs to you.

[firewatcher]

Brynne,

I am a life-long POTSy. I've had POTS for as long as I can remember. I am almost 40 now, and I can tell you honestly that it will get both better and worse. I remember in school having teachers tell me to "hustle my butt around that track," or that I was just lazy or out of shape. I was mis-diagnosed with "growing pains," asthma and attention seeking behavior. I didn't have a diagnosis till I was 37, so for most of my life I believed them and thought that all this was simply from not trying hard enough. It was a huge relief when I finally had an answer to all the crazy stuff my body routinely goes through.

Knowing that it was NOT just "in my head," finding this forum and talking to a therapist have been the three most helpful things that I have found to cope. Don't keep things to yourself! Have your parents find someone for you to talk to, because they have a hard time coping with this too.

Learn to forgive yourself and find someone to talk to. Keep posting and feel better (and if you don't feel better, allow yourself to feel bad.)

[yogini]

Have you joined dyna kids? Maybe it'd help you talk to others your age to learn about how they cope.

[icesktr189]

I too was diagnosed in my teens. It is really hard to be so young and trying to find yourself, while dealing with all this. The two best things I do for myself mentally is therapy and having hobbies.

Even if your not depressed or anxious, it is nice to have someone giving you their undivided attention.

Try to keep busy. I love my netflicks and really get involved with tv shows that I look forward to every week. It keepa my mood up to have something to look forward to, no matter how small it is.

Also make sure you take a mental break. I LOVE this site and everyone, but.if I notice myself going on too much out becoming too obsessive,i take a break from it all.

Just remember your life is not.over. It may feel like it somedays, but you can still do stuff, just a little differently

[Chrissy]

Hi,

I was diagnosed when I was 18, 6 months after being completely healthy or so I thought. I had big dreams and goals for my life and everything was on the right path to making them come true. Then shortly after christmas I got my first symptom, then another, then 2 pages worth of symptom summaries. The doctor looked me in the eye and said, "There is no cure, its either gonna stay the same or get much worse and I have never seen a progression as rapid or intense as yours", my parents went into debt trying to full fill some of the things on my to do list that required some sort of energy or stamina like snowboarding before I was too sick to do it. But I was young and stubborn and believed I was still going to make those goals come true. It may take longer and I may have to adjust the plan alittle, but I will achieve it even if I die trying. I soon learned it wasn't as easy as I thought, I had no idea that I would have no support from doctors or how fast I would decline. It wasn't long before I had to quit home schooling and didn't make it through my first GED class, it has been a long time since I could get past the first 3 pages of a chapter book before my mind goes blank, and I used to be a creative genius writing multiple storylines at one time now I go crazy cause the creativity is overwhelming me, but I can't get it onto paper. It's not fair to get sick before you get a chance to start a life. The hardest part for me was watching my parents sink into a depression. I will be 24 next month and still try to stay positive. Some things that help: A playlist in my ipod with inspirational songs from every genre(send me a personal message for a list of songs), a scrapbook of "I will..." with pictures of what I want out of life (finish school, career goals, lose weight, a family someday, a better house with a maid to help with what I can't do, places I'd like to visit, things I'd like to learn to do), I also scatter reminders of why I can't give up around the house like my two young nieces who I helped raise, but mostly I just surround myself with postive people and funny stuff. If you're laughing its harder to be sad. Also I have a lot of faith that something good will come out of this experience someday. You can't compare yourself to the "normal" people which is really hard when you have siblings that get to have a normal life, just be the best you can be and keep reaching for what you want. One thing to keep in mind, there is an article out there that says if you get POTS at a young age there is a good chance you will outgrow it by 25. Not sure if its true but it could happen. I knew someone who's symptoms got better around there 18th birthday. I hope this helps.

[maggie]

I really doesn't matter what age one gets this disorder, what matters is what you do from here. We all go through the grieving process for all that we have lost and that's normal. Once that step has been completed it is up to us the person to determine our lives. I have come to accept my disability and the things I can no longer do that I once could. Now my complete focus is not on what I can't do, but what I can. Since being active is no longer available I decided what can I do sitting. I have been listening to music at night to help me relax and sleep. While laying in my bed I thought to myself I can sit at a keyboard even though I have never in my life played anything musical, now when I have all the time in the world is the time to begin. I told my husband my plan and the very next day we were out buying me a digital piano. You can find these very reasonable now. Then I starting call around for teachers who would be willing to give me lessons, knowing that there are days that I just won't be able to make a lesson. You will find many teachers out there who are willing to help someone in need, I find all you need to do is swallow your pride and ask. Now I play my keyboard for hours. I don't care how long it takes me learn a song, I have the time and I have come to love music and now being actually to play it is so rewarding. I have been able to exercise some and so now instead of riding my recumbent bike I take dance lessons! Yes, for a person who has never danced in my life I am now dancing. It may be only for 15 minutes some days or 30 minutes another, I find this ten times more fun then riding that bike! My advise to you is to begin to dream again only in a different way. These are only examples that I have decided to try, think of all the other outlets there are out there just waiting to be discovered, there's painting, drawing, writing,and so many other opportunties waiting. Don't spend another day dwelling on the lose start dwelling on the possibilities.

Maggoe

[bmahaney214]

All I can say is thank you to everyone!!

My problem *** talking to someone about everything is I don't want to burden them with my problems. I do have people to talk to and have before, but I feel if I keep complaining to them it will get anoying to listen to.

I know I shouldn't think that way but I do. Maybe I'll ask my parents to look for a therapist.

I really loved reading all your replys. Age doesn't matter, we are all suffering from the same thing, it's good to know there are people that understand.

As far as Dyna kids, no I haven't joined but have been thinking about it a lot lately.

With crying, I guess since I'm so vulnerable right now I feel like showing someone I cry will make me seem weaker. Again, I know I shouldn't think this way but I do. I cry alone, in the shower, when my siblings were at school, whenever no one would see me. I share a room so easier said then done. I know keeping everything in isn't good, and will only make me feel worse.

I don't really have hobbies, though multiple friends of mine have told me I should take one up. I don't know what to do. I read, I guess that could be considered a hobby. And I've been thinking of taking up writing. Maybe then I could get out some of my feelings.

I really appreciate hearing all your stories. Thank you so much for making me see I'm not alone. I will definately try to change my ways and tell people how I feel.

Again I typed this on an iPod so please excuse any errors.

Thank you -Brynne

[roxie]

Brynne, starting a journal to just let out all your thoughts and feelings may be very cathartic for you. You dont have to show it to anyone just keep it for yourself and your deep thoughts!

Also, I was a lot like you when I was a teenager in that I cried a lone, I cried in the bathroom, shower, falling asleep. Anywhere alone. I'm gettin better at being open about my struggles with people I trust but I still cry by myself too. I think sometimes you just have too.

[yogini]

You're right that healthy friends, no matter how great they are, may not want to listen to anyone complain all the time about being sick. You should definitely tell them a little. They might not understand even if they wanted to - even as adults many of us have trouble with our friends and family members not "getting it." That's why this forum is really great, but not a substitute for a real live person, of course! A good therapist could be helpful. It helped me a lot.

Netflix is also great when you're sick. I think I spent the first few months catching up on movies I always wanted to watch, then TV shows. A great way to lose yourself.

You seem pretty smart for 16, BTW!

[bmahaney214]

Thanks guys:)

I do have netflicks actually but having a big family not many opirtunities to watch anything, maybe I should show them this and say it's part if my treatment;)

and thank you, maybe POTS has made me age beyond my years..... My body certianly feels like it has!

[ladyt]

Hi Brynne

being young and dealing whit this is not easy. I have had pots always i think, but was diagnosed at 22. I was abel to go to shcool and even got a bacholr degree. But it was very hard, and had no idee about what was wrong whit me. The doc said it was all in my head. So i was told to pay no attension too my body from a very young age. So thats what i did, and i botled up my feelings too. During my last 7 years i have learned gradualy how to really deal whit my feelings and situations. Getting to griev is important. I had a mnth about two years ago. I cryed and cryed, and dived down into my feelings.

And now i try to have a good cry when needed, though crying doesnt really come that easy for me. Watching a sad movie can do the trick. I also write it down, i seldom keep it though, i burn it up or tear it up. I ust gett it out, as angry, childish, selfpitty etc as a need.

i dont really talk about it whit friends. I have on that understands my limitations (as well as she can), and thats comforting.

I have tryed to learn difrent things over the years. Like knitting. I miss my knitting (but i am having a year break cos of inflamations in my arms). Also embroiding and other small stuff. I whant to do some scarpbooking too. they main thing is to find somthing u like and are abel to do alilte at the time lying reclined.

Being in thouch whit others strugling whit the same can also be very comforting. For me the internett can bring alot of comfort, though i dont spent that much time on it.

At my worst times my ever growing dvd collections also makes things easyer.

i hope things will gett better for you soon. And seek comfort and joy where u can. Getting a few laughs are important when life so fare from what u whant.