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The Ups And Downs....i Feel Like My Insides Are Being Torn Out

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Hi Everyone,

I had been having some pretty good days, since I got my wheelchair, and I started to feel like I was getting "better". So when I woke up yesterday, and felt great (for me), I took on a big outdoor project. I built a firepit in my backyard. There was a lot of work to it, and I did get real dizzy, and almost (only almost, yay!) fainted 3 times. But I would lay down, and rest, then would feel good again, and go again. Well everyone was thrilled with the outcome of the project, except my body. I just thought "that's ok...after a good nights sleep I will feel good again in the morning!" WRONG! So there was a fair that we had planned on going to see, and we went. I used my scooter, which helped a lot, but I just feel so awful. I had more plans for the day, but they have been cancelled, because I can't get up without my body feeling like the insides are going to drop out. Everything hurts 10 times what it normally does. My legs feel like I can't move them, for the muscle pain, and everything is moving under me. I have fallen down more times then I care to admit today. I feel like I need a forklift to get my body even to turn over. It is just so darn depressing. I don't mean to wine, I know everyone else here hurts too, but I sure would like to just be normal again. I was thinking I wasted the money on the wheelchair, because I felt better. Now I am thinking the reason I felt better was because of the wheelchair.

Does anyone get this super heavy feeling especially of my insides like they weigh a lot, and are going to just rip out of me. One day I expect to stand up, and find my guts on the floor!!!

Thanks for letting me vent this. Just feel so frusterated!


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Oh Suzy, I'm afraid you overdid things! Although I bet you'll enjoy your new firepit this summer! :lol: When I overdo things, I feel like my body has been run over by a steamroller. Remember in high school chemistry learning about ATP (the little molecule that supplies energy to our cells)? It feels like during the exertion, I use up 99% of my ATP. So either an hour later or a day later, I crash and it feels like I don't even have enough energy to breathe. And yes, every muscle hurts!

For me, that's okay if there's something I REALLY want to do. I just know I'll pay for it, and I make sure to have time to crash later.... :) Janie

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Hi Janie,

Thank you so much. Yes we have already had a fire in it both nights, and cooked out both nights, so it is going to be a great source of enjoyment. Luckily I have some outdoor furniture that I can lay on, and that is where I enjoyed the fire from. That is exactly what I mean. I feel like my cells have nothing left to keep them going. It just gets so depressing not to be able to do the things I'd like to do. I have always been the type of person who enjoys projects like this. I guess that is what I forgot to do is give myself time to rest after I was done. Thanks for your support.

Suzy :)

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I'm so sorry that you're hurting so much. It's so hard to start ourselves from overdoing things when we're having an 'up' day. Of course we want to take advantage of it! One of the true frustrations of our disease. I do think with time that you learn more about what your personal limits are and how to save up energy. A friend of mine who also suffers from this disease has described our energy levels as 'spoons'. You start out each day with a certain number of spoons (energy; ie ATP) and you need to determine how many 'spoons' certain activities will take and how to know when you're close to being out of 'spoons'. I like the analogy.

Here's a huge hug and lots of positive energy!


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OH YESSS!!! Hey I think you overdid it too..but its sooo disapointing and frustrating isn't it?

I am sorry I did not see your post earlier. I was just feeling so bad myself and went onto this forum to vent myself. I was looking forward to a work gettogether and I woke up feeling so bad..BP/HR and symptoms all over the map. THIS was my chance to socialize with folks at work..to bond with the one giving the baby shower (for a RN co worker) as she and I were not as close. THis was my chance!! I drove my fruit tray and gifts over to an RN that lives close by....went back home to rest..and I just started to cry!!

I dont have anyone else to help me. Even though I am not as bad as most here..and of course YOU..but I do know what it feels like to have something to look forward too and just cannot make it. It doesnt' start out this way..it just happens. At least its my day off. I need to rest so I can work tomorrow.

Hang in there..glad you can at least enjoy the fruits of your labor!!


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about 3-4 years ago before dx i would have the same feeling as if my insides were going to fall out of me. thank goodness it hasn't happened in a while.

i remember it was when i was standing alot. are you ,OI? i am, that's why i ask.

us dysies with OI have to watch that over doing it. of course, i am the kettle calling the pot black. i can give it just don't heed it myself.

take a good long rest and drink plenty of water. i know duh. :) like you don't know that.

hey, i get rip roarin mad when i can't do what i want cause of this stuff.

hang in there. and i hope you do start to feel better!!!!!!!!!!

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Thank you all so much for the support. I'm just in tears here, because no one else would really get this, but other potsies, and I am just so happy to have cyber friends like all of you.

Jana, thanks so much for the hug, and understanding. I know the spoon story. I have been on that site. I love the story. just wish I could figure out that just because I don't feel bad for a day doesn't mean I have endless spoons :) ! Either figure it out, or accept it!

Jan, I'm so sorry you are having a hard time with this too. It is so hard, and I have cried through so many things I have wanted to do. Like last summer my husband was taking my kids fishing, and I tried so hard to go. In fact they drove me all the way out to the lake, and I was only able to stay there for one hour, and they had to drive me all the way home. I was heart broken. I hope you can make it to the next thing that you want to.

firewoman, Yes, my diagnoses (well one of them anyways) was OI. I hate the feeling like my insides are trying to fall out. It just feels so heavy, and awful. Nothing works on me when I feel this way. I can't eat, or drink even water. I used to feel like it around the clock, that was when I was almost completly bed bound. I'm not glad that you have felt that way, but I am relived that I am not alone. Thank you for sharing that with me. (Oh...I get mad too. I get mad at being sick...like that will help!!! Ha Ha!)

Hugs, and thanks!


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