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Apr 07, 2016 3:10 AM

Been away from keyboard and really away from world. Lately none of my meds are helping, this weekend is fun packed with driving 8 hours to see the inlaws. Forgive me but I wouldn't care if I were left home like the kid on home alone!
My moods and pain are horrible, I'm trying to push through to Monday when I'm admitted to hospital for 7-10 days for ketamine infusions! I'm hanging out and hoping it is as effective as the last time! I'm also just looking forward to the rest and no one whinging at me that I'm either not resting enough or not doing enough.
I just sometimes want to crawl in bed and pull the covers over me while pretending I'm not here... Bring on Netflix in a hospital bed and a few good books!
❤️💚 to you all.

Apr 07, 2016 7:07 AM

Ask afw, I too have to retreat much of the time. I totally get what you're feeling. I can't get my file to understand that I just need my space with no phone calls worrying every second. (Does that sound bad?)
I love my mom so much, but she focuses on nothing but the negative and I need positive, uplifting words. She has become so negative lately that within just a few minutes of our phone conversations, she's crying with worry over me,and literally everything bad that's going on in our family and the world! I can't stand it!! My husband and kids on the other hand are very understanding.
There are times when I have to shut everyone and everything completely out or I just plummet and my pain increases to immeasurable levels.
Honey, you have to take care of YOU! Don't feel guilty for that. If you must, tell your nursing staff to post a "no visitors "sign on your door. Take care and God bless you!

Apr 07, 2016 7:09 AM

Just noticed the type-os. Kickpainsbutt! Sorry. I meant to ask what afk afw meant, lol

Apr 07, 2016 7:37 AM

Kickpainsbutt, some times I wish I could go into the hospital for some R&R if that makes sense...with a No Visitor sign on the door not that I think it will be needed. I would like to be fixed though. I am praying that your results are not only as effective but even more effective as before. I agree with Sleepyingbeauty you need to take care of you without guilt. And how are you Sleepyingbeauty? Blessings to you both!

Apr 07, 2016 9:03 AM

Kickspainsbutt, I hope you have as little pain as possible from the trip. I know it won't be easy, been there. Try and stop at least every 2 hours to get out and stretch your joints. I agree with Sleepingbeauty & MySistersKeeper; take care of you. If you need solo time at the hospital then ask for no visitors. Hugs & prayers this treatment will be more effective and last much longer! 🙂💕🙏🌼

Apr 07, 2016 9:16 AM

Mysisterskeeper, Thanks, I've had a few "decent" days. Pain level has backed off during the day hours for the last 3 days. Nights are still a battle, but I'm grateful to be able to get some much needed grocery shopping and odd and ends taken care of during the day. I go on the 14th to my hematologist at Vanderbilt Hospital. I hope we can begin. To connect the dots for what's going on with the crazy nerve pain. Funny thing g is, now that I'm taking the Aptiom in place of the gabapenten, I haven't had one of those paralyzing episodes. Hmmmmm....makes me wonder. I hope you're doing better. God speed to pain free my friend.

Apr 09, 2016 1:13 AM

Thank you for the kind words and handy info re the no visitors sign will be good to shut off for at least a day here and there while I'm here...
Sleeping beauty away from keyboard / away from world. Was being lazy, sorry!
I hope things are going well with all of you. I've survived a day and a half so far so only a day and a half to go... We have stopped every hour or under and we stopped for a good amount of time at least an hour each time! So that's been good. My inlaws have been very considerate of my pain and checking on me a lot which is sometimes annoying but it's great to be around caring people.
Much love hugs and prayers with you all ❤️😘❤️

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