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Poor little me

Mar 10, 2016 5:24 AM

So I went to a concert the other night! First time going out in forever.. Low and behold... Nothing fits me so had nothing to wear... Normally I would cancel as the anxiety would set in but I pushed and pushed as these sort of country stars don't come to Australia often (his and Florida Georgia lines first time in Aus). So I put on my prettiest face and a dress that makes me look even bigger than I am but at least it was thin flowy and cool (was 36c at night)... I get there and by the time I get into the arena I'm broken...๐Ÿ˜ข half way through ๐Ÿ˜ญ๐Ÿ˜ญbawling my eyes out as the pain was horrible๐Ÿ˜ญ๐Ÿ˜ญ we leave the concert and it took me a good 45 minutes to get to the car with the stopping and resting (normally a 10 minute if that walk). So while my sisters are drinking and having a great time I couldn't shake the feeling and thoughts of "why am I even here" I guess I'm still coming to terms with it. I just needed to get home to my meds and as I was the only one sober I needed to wait until we were home. I cried and cried myself to sleep. I guess I'm still not ready to forget my old life. To add insult to injury I went and watched my sister fill in for my old netball team! Gosh I was sooooo jealous! I keep holding hope that one day I will get back there!
I feel horrible as I feel like I make everyone else have a bad time because I'm there adding a weight!

Mar 10, 2016 5:44 AM

I kept doing this to myself so that I could hang out with my 'friends' that never came over but always went out together but I realized I needed to set more strict limits and now we don't talk anymore. It shows you the people who will always be there for you through thick and thin and those who just want an able bodied friend to go out with. I'm sorry you didn't get to stay,, I know it's a horrible feeling having to leave early especially if you have to make other people leave too because then you end up feeling guilty or at least I do.

Mar 10, 2016 7:48 AM

KickPainsButt, you will never forget your precious life or how your life was. It's a fact that is hard to deal with. I went to therapy and learned that I had to treat this as a loss and mourn as if grieving for a lost loved one. This way I could heal and move forward into what is now my new "normal". Now, that being said, it's not an easy thing to do and it's also something you have to do in your own time. We all grieve differently and are able to move on in different lengths of time. It really is all a process. And there are days that you take two steps back even though you've moved ahead. It's ok. You need to pay close attention to your body, your limits, your strengths (and you DO have them), and figure out what your triggers are, take breaks and know that when you have a day where you can't then you can't.. No harm, no foul. You need to take care of you. If you're having a bad day, connect with the community and chat, listen to your favorite music, color, sing, whatever to give you a distraction. Read a book, chat on the phone. It's ok to cry, I've done it many times. But make room for laughter. You'll be amazed at how much better you'll feel if you laugh with a friend. I wish you all the very best that your life has to offer. I know it's hard but only WE have the power to either go into the pit and become out illnesses or to fight and struggle and live our lives on our terms. Sending you supportive, gentle {{{{Hugs}}}} and prayers that you are able to find your way. ๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป๐Ÿ˜Š

Mar 10, 2016 9:36 AM

Beautifully put AlwayzInpain, and Meganblondie!! Kickpainsbutt, I relate to your every word. I have put on weight because of the medication I am on. If it don't stretch I can not wear it! And my appetite has decreased significantly. I have come to the place that in my mind I map out where I have to go... If it is too far / too much walking I just rule it out no matter how badly I want to go. One my sister isn't as kind as yours. My sister would have been yelling and screaming at me for even trying it. I do have a fold up cane, I have a rollator, and walker.... Depending on how prideful I am I refuse to use any of the devices. I am sure you looked beautiful in your dress! I admire you for trying. You have strength and determination I don't have at times. I too think of all the things I use to do, see others doing that I think I should still be able to do but can't because of this dreadful illness. My Bucket List before my illness is long... I haven't given up that I will be able to complete it ...one day. Maybe I am torching myself that I won't let go and grieve my past physical life. I am praying for you too!

Mar 10, 2016 9:59 AM

Kickpainsbutt, At least you got to enjoy some before your body started getting angry with you. I always been a large person. I wish I could say it's because I love food, but I don't. I hate it.

Before I was diagnosed with hEDS, my other half and I would go geocaching almost every day. We went at least once a week. The last time we went was last summer. We hiked for about a mile. One lousy stinking mile. I was in agony. When we finally got home I cried from the pain. It was only a couple of years ago we would measure a good hike to a cache in miles, not a mile. I hate what my body is doing to me.

That being said, I try to find something funny every day. For example when my shoulder dislocated last week while I was sleeping, I decided that it was funny that it went out without me. It didn't even bother to invite me to go out with it! I mean how rude is that?

We have three very hilarious cats. The oldest one, Chubby, is blond and will be 12 years old at the end of this month. She used to weigh 15 pounds. Her vet told us to put her on a diet...She GAINED 3 pounds! We took her off the diet and she lost 2 of those three pounds. Go figure.

Our middle kitty is a feral rescue, Phantom is a tortoise shell kitty and will be 7 this spring. She hates people, but loves Rick and I. My great niece (just turned one on March 3rd) came to visit Monday and Phantom hissed at her.

Our youngest kitty, Sky will be 2 this spring. Phantom can't stand her, so of course Sky likes to pounce on her every chance she gets.

I hope my kitty tails give you a smile and a reprieve from the pain. :)

Mar 10, 2016 10:01 AM

Oh my gosh ScaryAnn I love geocaching! It's so cool to see what you find out there! My favorite place I've done it is west Texas. I really enjoy looking at beautiful geodes! I miss being able to do that stuff a lot!

Mar 10, 2016 10:08 AM

OMG!!! I love geodes and crystals!! I wish there was somewhere on the east coast I could go and dig for stuff!!

Mar 10, 2016 10:10 AM

meganblondie, we used to live for geocaching! I miss it so much! It's so hard to go though when your knee or ankle is out. At least when my shoulder is out I can throw the arm in a sling and away we go! Rick and I are ScaryAnn at geocaching.com you're welcome to look us up. :) We live in Western New York, so most of our finds are in NY. We used to be known for our tough hides. We had one hide that had more DNFs than finds. LOL (DNF = did not find) We had to archive it because Rick's back has gotten so bad he couldn't do maintenance on it anymore. It was half a mile hike uphill in the woods then down into a raven then you had to retrace your steps to get back out, or climb the ravine wall.

Mar 10, 2016 10:15 AM

Meganblondie I didn't know there were placed here in NY that you could do that!! What kind of stones and crystals do you find?

Mar 10, 2016 10:22 AM

Alwayz, You can find some beautiful crystals in Allegany State Park. But geocaching is like a game where someone hides a container with a log book in it. They get the coordinates where they hid it from a handheld GPS or smartphone, and then put the coordinates on a web site so that other people can find it. The finder writes there name and sometimes a short story about their adventure in the log book then goes home and logs their experience on the web site. It's awesome fun and all around the world. And some people do put geodes and crystals in the caches.

Mar 10, 2016 11:46 AM

Blue Quartz, Quartz crystal, Topaz, agate geodes, smokey Quartz and more!

Mar 10, 2016 12:32 PM

Kickspainsbutt, I'm sorry you had to leave the concert because of pain. It's good that you tried. Don't give up trying activities though. Maybe next time take some meds with you, and maybe your family could get the car and pick you up/drop you off at the doors. Start small & short at first, plan ahead and pace yourself, allowing for rest before & after. None of us can do everything we use to do, but we shouldn't give up living and trying to enjoy some of life. Hugs & prayers your pain will lessen soon. ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒผ

Mar 10, 2016 4:35 PM

Flappyslady, I'm with you!!! I will not give up fighting for what I love to do! I think after my hospital burst things will be a lot easier to manage! Fingers crossed it works again! My prayers are with u also! Much loveโค๏ธ

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