I'm not newly diagnosed, as I have been disabled by PAF for 2 years. I've lost all my friends around my age (I'm 26) I guess because they don't understand that I literally CANT CANT stay out late or shop, etc. It aches to be so alone, but I don't have the energy to try to get new friends.

My illness hit hard toward the middle of my undergrad studies and I'm trying to finish, just to prove I can. I failed because I can't have good attendance (my grades, however, were impeccable)and my school requires that for a passing grade. What if failure is the best I can do?
I can't hold a job, I can't keep friends, and no matter how hard I try, I'm failing.

When the dishes get done, my day is a success... this is no way to live! It just feels so pointless.

Jamernay,
You are not a failure, sometimes this takes a toll on you and NO ONE understands it. Your "friends" do not understand what this does to your body and they may be afraid for you and that is why they distance themselves. You are not alone, now that you have found this amazing site you have so many NEW friends that do understand what you are going throught and can be such a help to you. And you seem to have a strong faith in GOD and I do also believe that HE will help you "deal" with this too.

MAny have lost jobs also to this, for example, my hubby has tried to work thru almost the last 6 jobs that he has had, but his passing out has caused him to lose each one. After a fight with disability, he was finally approved. (He has had this since he was 27 & he is only 35).

Try not to be so hard on yourself and realize that you have a HUGE NEW FRIEND NETWORK here.

God Bless
Tammy

Jamernay,
So many are asking the same question. You already know the answer...or you would not have Psalm 73 attached to your signature!

I will pray for you now and hope life's trials don't seem as heavy for you. Peace,

Jamernay,
I also understand how you feel. This illness is so life-changing, and frustrating. I too have very little social life, since it's onset. My church life has been minimized down to Sundays only, and only if it's a good day for me. Going out just to have fun with friends also doesn't fly. I definately can't plan ahead and know for sure I'll be able to attend the event. I work from home with my husband, running a licensed daycare. I could not work outside the home. This works for me as long as I pace every day, and rest whenever I need to.
I have been so much less lonely, since I found this site. I believe that it was an answer to my prayer. If you ever need to talk, please PM me. I too can use another friend. I check my site at nap usually. 1-3 EST Take care & don't give up your faith. God is still in control. Let him use your illness as a way to reach others, it helps me to know that I'm living for Him regardless how bad I feel. You will be in my prayers. suzq

Hang in there please.. I am not as bad as you right now but that could change overnight. I have more good days than bad. But when and if that changes I know that you would cheer me on. Life is worth it. Even a limited life. Don't forget to pass that on.
PS. Thank you for sharing Psalm 73. It is so appropiate for us.

Celebrate those clean dish days gal! I am proud of myself when I make the bed(that has been moved into the living room because I kept falling down the stairs)and sometimes sweep the floor in one room. One day two weeks ago, I took a day off from making the bed and had a palm tree chain saw art that a friend gave me. I took the spray paint I had the most of---brilliant blue and sprayed it. It is standing by my neighbors horse pasture, but I can see it every time I look out. Its about 3 1/2' tall. It makes me smile. It did nothing but make the world a more colorful place, and it was all I did that day, but it brings pleasure every day.

Maybe some knock you down colors of plates???

Thanks, ya'll... for reminding me of what I already know, and for affirming that I'm not alone, I guess its just so easy to forget.
It still sucks, but thanks for helping me hang on to hope.

life is so hard with any type of Dysautonomia!!!!! I just wanted you to know you are not alone, I understand what you are going through. I think it is weird that people with cancer are accepted, and they don't know what casuses it. But, boy if you mention what we have, people don't believe. I too have lost so many friends... will you be an online friend?

la745773@mindspring.com your friend, Lynn

Sad isn't it, that this is my first time to this forum (having just been diagnosed) and this is the discussion thread that catches my eye. I've been asking myself the same question, and it helps SO MUCH to know I'm not alone. Thank you for all your encouraging comments. For better or worse, I'm still able to work, but that means I won't have time or energy to converse a lot with forum members. I definitely need friends who will listen and understand, though, so I'll be back. Blessings to you all.

No, it really is not worth it. Be prepared for a society who doesn't understand that though.

Spektre

quote:

Originally posted by jamernay:

When the dishes get done, my day is a success... this is no way to live! It just feels so pointless.

When I read that line, it reminded me of my mom and a line she used to say.

At the time, my mother was dying of end-stage renal failure. She had had diabetes for over 30 years and we all knew she was not getting better. At the time, I was a young mom pregnant with my 2nd child, and was constantly trying to make EVERYTHING perfect and keep EVERYTHING clean. I just wanted to be a good mom, like the one I had. Little did I know that in less than 10 years from then, I would be disabled myself.

Well, whenever my mom saw me running to and fro, she would shake her head and say "Dirt can't kill you, unless it falls on you." Can you tell she grew up on an island? lol.

I always laughed her off and went on cleaning. Hah! Ten years later, I would cry looking at all the things I couldn't do. The dishes were the least of it!

But that line sticks with me. I say it to myself every one and awhile. It reminds me of my mom (she passed away in 1995. She never got to see that 2nd grandchild. It is that child who now has POTS) and reminds me that it is alright to have dirty dishes and a less than spotless living room (why was that so important anyway?).

I have learned to appreciate what I can do when I can do it.

Hope that cheers a little.

Take care,

Judi

I am so sorry, your story sounds similar to mine accept I have been sick over 14 years, I lost my parents, uncles ,, aunts etc, they don't believe I am sick, crazy huh. I do have a devoted husband thank God for that. Please hang in there, I truly feel your pain, HAve you tried a church, my church is the only place I feel accepted and have friends, all the old ones are gone. email me if you would like la745773@mindspring,com Lynn