What To Do...

[ladyt]

hi..

I been strugeling whit this thing called dysatonomia for so many many years. And i have concluded that for me the worst is not the syndrom/illnes it selv that is worst its the consecvenses of it. And right now I am in a place where i feel that my options are bad. Its not that everthing is dark, because its not. in so many ways I still enjoy life. And I am greatfull for the good things. But that havnt prevented me from crying a lot this last couple of days.

My selfesteem and confidence is draining away. I am so lonly, and i think my friends are ust so not much that anymore. And my inlaws, well i think they beliv there son/brother could do a lot better. My partner is a wonderfull person, but gon a lot. And a feel bad for being such a sickly litle creature, preventing him from having the life his friends are having.

Its one thing that I am seldom invited anymore, i so seldome can go. but I try to have difrent type of events at home, a bitt hard when no one turns up. maby its my ditry home that scarse them away..

And then when u are finnely invited some where u have to turn it down because u cant go. i dont know, i gess life is hard one everyone, and one should count ones blessings. i gess i dont feel that bleessed right know. I am very solution oriented, but i am out of idees.

and the ironic in all is that i like to be alone, i do. but its too much. I have to much time to my self. I ust whant to feel equal, whanted and liked. maby that to much to ask for. i dont now how to fix this. I dont whant to become the stange sick one, the one pittied, the usless one. i feel overwhelmed (sorry my spelling is soo bad).

I always said what does not kill u make u stronger, i am not sure anymore. i dont whant to be bitter and pittie my self. ust like i dont whant the pittie of other, i ust whant to feel whanted. My friends and surandings are so bissy bissy, i am not in that way. they know, it feels like that make me a looser.

i dont know if any of this made any seense at all . and if anyone read this, soory for the blues.

[juliegee]

(((((Casper))))) I'm so sorry things are rough right now. If you're able to be out at all, consider volunteering for an organization. Aside from the work I do for a self-owned business, I volunteer a lot. My measly little 4 hours of volunteering wears me out for the day, but it's so wonderful to feel like my work is necessary and makes a difference. I also meet some really great people. Sick babies often need holding, underpriveleged kid's need loving, even rescued cats and dogs need interaction. Check out all of the options that are available in your area. Seeing the needs of others always takes me outside of myself and helps me see the bigger picture.

If you can't be out at all, seek support groups like this one. Some of my online friends have become very important to me & definately help chase away the blues.

Even though you're not 100% healthy, YOU have so much to offer. You know, us potsy's don't have a monopoly on suffering. Everyone bears a cross of some sort. Try to tune in to others' obstacles and, I promise, you won't feel so alone.

We value and care about you here, Casper.

Hugs-

Julie

[lloppyllama]

Wow, I am so sorry that you are feeling so unloved and lonely right now. Everyone feels that way sometimes, but when you are sick it is definitely magnified.

It is very hard to count your blessings when you feel like you dont have many at all to count. I try to look at being sick as a blessing. For me there are religious aspects that is have factored into it, and with God helping me along the way, I dont feel nearly as alone, and I do feel blessed to be "cursed" with this illness. I dont want to be "preaching" to you, because if you dont have the same views as me...its probably not going to be appreciated....but I just like to look at this burden as the cross that we are meant to carry, and so I want to carry it well, as God's reward for me in heaven will be much greater. That is just how I deal with it, take from it what you will.

As for actually getting people to care more perhaps. Maybe you could get in touch with some older friends or relatives who wont be so busy...and talk to them through the mail. Nothing super deep or painful to talk about, but just friendly reminders to say that you care about each other and that your in each other's thoughts.

As for your husband, maybe you could talk to him about this. I dont know how your relationship is with him, and how comfortable you are with speaking to him about things such as this, but I think that if he knew you were so lonely, perhaps he could try and be there more, even though he is so busy, or when he is at work, that he could just call you over his lunch break to say hey quick, and let you know that he is thinking of you.

I hope things start to be better for you soon! If you ever need someone to talk to, feel free to PM me, I would be happy to respond, because I do care!

Good luck, you'll be in my thoughts.

Love,

Mary

[runningshoe]

Casper

I could have written much of what you wrote. I understand how you feel and I am still pretty functional (compared to some, I don't know too much about your situation). I think pots wears away at your selfconfidence because you are always second guessing yourself (is everyone feeling too hot/dizzy/cold/lightheaded etc. or is it just me?) or preparing for the worst (where is the closest chair/glass of water/salty snack/ride home etc). Pots has taken away something intangible for me that I am still trying to find a way to bring back. In the actual moment, when a pots symptom appears, it is a reminder that I am ultimately not in control. It is hard to live for the moment, be in the now, when the moment seems to be forever changing and dictated by which part of your body is not cooperating. I think life is more meaningful when you can through yourself into things and lose yourself. I can't do that anymore because I am constantly reminded of my body and its limits. I am surrounded by friends and family and still can feel very lonely. I wish I could meet some of you and we could laugh and cry knowing that the people around us really know what we are feeling.

Casper, a better day is coming. Hang in there. Cry if you have to. I let myself be sad but when I am able I list all the things in my head that I am thankful for. It helps me to remain grateful. Some days it is just too hard to do that but I try to just ride that out. Sending you healing wishes!

[pat57]

I think Macks mom is on the mark. You could get a military penpal or a prision penpal. You can make a huge differance in someones life.

Wishing you Gods speed finding your fulfillment.

[lil_kt]

Casper, i read your post & it was like reading about myself & how i've been feeling the last few months. I feel like i'm missing out on life & i feel like i'm ruining my partners aswell as his missing out on doing things because he stays with me, i understand the in-law thing aswell, i'm always worrying what they think of me & i worry they think i've ruined their sons life. They've never said it but i worry thats what they think. I get so down sometimes. My gp is sending me for some cognitive behavioural therapy to try & help me with having negative thoughts, fingers crossed it will help. Hope you are feeling better soon. xxx

[ladyt]

hi..

thnx for all uor respones. it is really nice to know that some one out there read my words. i would like to volentere, but i dont have the healt for it. I am hoping for a new entrenc to my home, so i can get more esy out (have ust got an elchair, but ust sitting in the garage for the time beeing.)

i know there is hope , i know we all have burdens. And I am really really greatfull for the fact that I live in a contry of peace and plenty. because i see the news , a lot of horible things are happing out there in the bigg world. I have been a positive being , if life servce u lemons make limonade etc. I still mostly are, but i am starting to find it harder to enjoy the litle stuff. I feel so on the outside, so lonly. I Have tryed to talked, invite etc. I gess i could be more pushy and ask directly for help. But i feel i do what I can i that department right know. my partner have been gone for 4 weeks now, but hes soon back. i dont whant to burden him to much, but we do talk.

The inlaws is , i dont know, they are so nice people. but the really healty ones, u know, the type of people that thinks that heavy peolpe ust are lazy.

i know hat this situation i have to find my way out, like all the others. i ust feel so alone in it. and i am stuck here in my own home. But i have found out, that when and if i can i would like to be a prison visitor. I never been in a real one. but i know the felling of prison because of this thing.

I am not belonging to any religion. but i do respect the ones that are, and understand that it can give great comfort. It is ust not for me. I have to turn to my self. I whant to grow , to gett stronger , to "find" myself. I dont whant to stop crying, stop feeling, ust be on the surface. i dont know.. i gess that is my real problem this days, i ust dont know..

I started to knitt, be on the computer, read(when abel), invite people, use a wheelchair, get a dog,try to be open, etc.. i have to turn this around, i know there are people that love me, they are ust bissy or and to fare away. And if some people dont see the true value in me (very person has a value, and i gess that include me), i gess that is there problem. Its ust for me to find away so that they cant hurt me as much.. And so be it that i spend most my days alone. that does not meen that i am a boring person (i dont do much either but so..?).

I cant do the things i love most, but i can do some stuff i have learned to like(like knitting). And when my brain is not all fogged up, i am of normal iq so..=).. and it is the lilte positiv stuff one have to hold on to. like a sudden phonecall from some one dear to u, even if all the whant to do is vent etc.

This got to be qouite long, and i gess all ower the place. Ust like i am at the time (and i am used to me so not like this)..=)

sorry folks.. i hope u all have somthing to hold on to, even when its dark.

that all

[lloppyllama]

Hey Casper,

I think you seem to be seeing the brighter side of things here, and I think you knew it and saw it before, but everyone needs to be sad, and hit a low point to be able to get to that "happy" place. I'm glad that it seems your at peace with all of this more so. Good luck, and never forget that we are all here for you, and do truly care!

Love,

Mary

[pat57]

http://positivepause.com/

[Alizee]

Hey Casper,

I am so sorry you are feeling so blue. You know POTS and other chronic illnesses that cripple the body are like a living death. Your body feels like it's shutting down but it somehow keeps on going. The majority of people don't believe you, Doctors might not believe you and your own family might not believe you're even sick, but there is someone who does. Not to preach at you either because I know that's highly annoying. Personally for me the only way I can deal with my chronic illnesses is knowing that there is a creator of the universe who loves me beyond comprehension, He has a plan for me. Just as He has a plan for you. Your life is very precious! I believe in Jesus Christ, referred to as Christianity but it's not a religion it's a relationship. Don't stop fighting that darkness you feel, I know it well and where it comes from. Feel free to PM me, if I don't respond right away I'm most likely in a bad flare

You're in my prayers,

Alizee

[ladyt]

hey every one thanx for taking the time to respond. It feels like i am on the way out of the sea of selfpitty and owerwhelming sorrow. It did hit me hard this time. I gess when cronical ill it somthimes fell like a contiually griving prosses, over the life and possibilitys that are out of reach.. And when it stack upp whit bad news it can trou one totaly of. This thime it was bad new from doc, a wedding (the brid is like a sisterfor me) i cant go to (because of the plane trip), and inviting to diffrent events her at home and nobody coming to either. and my boyfriend being so fare away. and the lonlyness i try so hard to fight in the ways possible for me, ust swallowad me..

When i was healty i would go for a run ore clean my home whan sad. now I can only but a brav face on or cry. I ust needed to cry a bitt longer and more than i have in the past. Yesterday, i put on a "sad" cd and cryed my eyes out. I had been crying of on for a couple of days ahead, (i griev by ruls normaly ). Yesterday i ust let me swallow by the wawe, and it finnely pushed me back on shore ( i hope, fells like it now).

And as sorry i am for all uf u having to strugggel whit this thing, i am happy to not be alone. Its so hard being around healthy people somthimes. well i gess thats a good thing being mostly a lone, i am not so much anymore, arond healty people that is..

sorry, i gess i am more me today, my wierd sencse of humor is back..

have a lovely day every one. and if our day is bad, i hope it turns soon. I am a bitt potsy now, so going to but er or another dvd on and ust spaceout...

[dezyrae2]

I often feel like this too but just remember there are people here for you and it will get better. Good luck and keep smiling.

[Megan]

Just wanted you to know that you're in my thoughts, and that I hope you find things (and people!) to fill your time.

Meg