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MEESSHH SparkPoints: (90)
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10/18/14 5:55 P

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I usually see someone in a wheelchair when I get really down and try to boost self up - I feel down nearly every day because i can't eat drink poop burp, degas, sleep. I don't feel good don't sleep well everything makes me feel ick, and I don't have close friends to talk about my concerns and docs are not helpful. I feel I have no purpose to live with anxiety and health issues - yes they seem overwhelming!

Solutions for me that help: reach out for support - told coworker really down and he now checks on me, spend time with kids, continue to volunteer for purpose and social contact, act as if I feel ok, eat lots of sugar for energy, read online stories so not alone with struggles, chew gum for gurgly insides to calm self, call friends and text so feel less alone, go to work so see other people. Hope this helps!

BODHIAMI's Photo BODHIAMI Posts: 27
8/17/11 10:43 P

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Thank you for sharing your pain.... I have been feeling the same way.... I have no support and have children and a man-child who calls himself my husband who all depend on me.... I enjoyed the time I spent in the hospital because I was able to have someone take care of me for once... My body hurts, my guts hurt, and I am a food addict so I have to learn to cope in other ways but can never find the time to take care of myself.... I come on here and read so I don't feel alone....

"To thine own self be true."


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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
8/1/11 7:10 P

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I know my biggest problem is that I don't have a choice about it. When I can't get enough sleep because of horrible neighbors and/or insomnia, then the next day or next several days is just utter hell for me. Everything drives me crazy, everything makes me hate, everything makes me want to give up. Nothing I do helps me feel better that day. The only way I can find to get out of it is to sleep for most of a day, preferably knocked out with medication, and work my way back to some type of normal over the next few days to a week.

Of course, this is only being negative about myself and hating what is making everything worse. I fight to give something positive for others - a smile, a nice word, etc, though that tends to make me feel worse. I would avoid everyone for those days, but I have to work and taking a few days off a month isn't possible. When I come home if I try to let it out, I have terrible neighbors around me and a cat that can't stand loud noises. Crying doesn't help me feel better, it just gives me a serious headache. I want to have someone give me a hug and hold me, but there isn't anyone to do that. So instead I just stew in it all for hours or days until I can figure out how to find 10-15 hours to sleep it off.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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MOM2ACAT's Photo MOM2ACAT SparkPoints: (190,535)
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8/1/11 5:45 P

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One thing I have learned with both the GP and the cancer, is that being positive isn't a feeling you can force, and not feeling positive does not mean you are a failure. There are some days where I just have to have my own little "pity party", and allow myself to fully feel my bad feelings, and have a good cry. You got to let those feelings out and not keep them bottled in.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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DEEDSTER Posts: 29
7/31/11 8:16 P

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I'm not sure anyone can stay positive all the time with this condition. You just have to take the "good days" and be thankful for them and deal with the bad days one at a time, 'cause you never know when tomorrow might be a good day. I say when it gets to be too much, go ahead and get it out of your system. Scream, hit things (like pillows), have a good cry. Then go online. You are not alone. There are a lot of people with this condition out there and they are all supportive of one another. Some of them are really, really sick (j-tubes, g-tubes, IV nutrition). I am then thankful that it hasn't gotten that bad for me. I still feel sorry for myself, but not as often.

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
7/28/11 2:20 P

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Because I sure as heck can't be positive right now! (Feel free to post something without reading all this, because I'm in a pretty bad place right now and don't want to bring anyone else down!)



Every time my GP flares (like right now) and I can't get enough nutrients or calories, when my entire body is screaming for nourishment I can't give it, my stomach and intestines feel like I've been eating bricks or concrete, and I have a headache that makes it hard to concentrate or have one train of thought actually get to its destination, I lose any positivity I have. I just want to scream, hit things, destroy whatever caused it (in this case a psychopathic neighbor not letting me sleep at night), or just curl up in a corner and cry until I pass out. What makes this worse is I have to sit here at work, acting like I'm fine, while I fight back tears. I can't just go home - I have too much to do and not enough time to do it as it is.

I've found that going to get a massage can help my stomach start working again; unfortunately, I went last night and now my muscles are also in severe pain which is making me curl up my neck and back - which makes the pressure on my vagus nerve worse, not better. The masseuse I used to go to who helped incredibly is gone, and I can't seem to find anyone else that isn't too gentle, too firm, and knows how to release the areas that need to be released. So that hasn't helped me at all this time.

With the major lack of sleep I have been dealing with all week, the horrible pains throughout my body, and with a really intense headache that is making my vision blurry, I just have no capacity to be positive, be calm and relaxed, have any patience with anyone or anything, or even think that anything is worth the pain I am in. Plus doing everything in my life alone and without support, plus often having to fight everyone and everything just to survive makes me want to give in to the pain.

I just don't understand how some people can be positive through this stuff. I do everything I can to be positive when things 'aren't so bad' (which is still not good, not painless, and not 'normal') but as soon as this stuff hits me, it feels like I'm being tortured by life and I can't even be neutral.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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