heathmcev Posted May 17, 2011 Report Share Posted May 17, 2011 Hi everyone! I would love some advice I know I can't be alone in how I'm feeling and need to know how others cope with limitations at certain times when expectations may be higher than usual...I'm away with my family on vacation (my parents have taken my brother & I to see where they want to retire) and I'm having a tough time. Not because they don't get what I'm dealing with - I'm extremely lucky in that they do! It's me. I decided that it's kind of like around Christmas time - how you know the holidays are going to be hard ahead of time because there's no way your body is going to let you do all of the things everyone else is able to - and you don't want to feel different or left out - but somehow no matter how well you pace yourself you still end up crashing and getting down about it (at least I do). This is how I feel. It's like I'm in this beautiful place and feel SO LUCKY to be here!! Yet I'm holding back tears much of the time (I actually did cry on the 1st day but that wasn't emotional so much as my body being in shock from exhaustion in getting here). My brain wants to explore and ride bikes and play golf and go shopping and my body won't even let me go for a short walk (btw, the weather's cool and breezy, so heat intolerance isn't a factor luckily!). Back home that's par for the course - but for whatever reason I'm having trouble translating that to where I am this week. I wish I could just settle in, find a way to be at peace, and go at my own pace - not feeling left out when my family is running in 10 directions.Coping skills anyone?? I want to enjoy myself and savor this rare change of scenery... I don't get away very often and want to make to most of it. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 17, 2011 Report Share Posted May 17, 2011 I'm sorry, I don't have great advice for this. Just wanted to let you know I completely empathize with you. Actually you deserve a lot of credit for going in the first place and trying to have a life. I've sworn off travel and it's sad because I have close family living in another state and I never get to see them unless they come to me. I would say to try to make this vacation your own. Do as much as you can, without pushing so hard, you crash. It's hard to accept our limitations, but you don't want to make yourself feel worse. So just try to go at your own pace and enjoy as much as you can. It's good that the people around you understand. Let's hope you will be better one day and can return to this spot and do all the things you want! Quote Link to comment Share on other sites More sharing options...
Magnesiumgirl Posted May 18, 2011 Report Share Posted May 18, 2011 I don't have any advice either! I'm so, so sorry you are having such a awful time To quote ~Naomi~ "Let's hope you will be better one day and can return to this spot and do all the things you want!" Quote Link to comment Share on other sites More sharing options...
heathmcev Posted May 18, 2011 Author Report Share Posted May 18, 2011 Thanks guys - your replies were especially great this morning when (just like at home) I couldn't get out of bed. i'm internalizing your words Naomi, about making this time my own. It's hard but I figure if I keep saying it, it'll kick in! I'm trying to soak in the change of scenery. Wish I had some sort of control over my struggle to be at peace with all this... Quote Link to comment Share on other sites More sharing options...
stacdliw Posted May 19, 2011 Report Share Posted May 19, 2011 I understand exactly how you feel! I am a huge Kentucky Wildcats fan and my eldest daughter, who lives 1200 miles from me, begged me to go to the Final Four in Houston. I had been quite ill the 2 months prior to the game with gastroparesis, POTS, and daily pain in the upper abdomen. At first, I didn't want to go, but then I thought, heck, I can be sick at home or sick in Houston spending time with my daughter and watching my beloved Wildcats in the Final Four.It wasn't easy. I was sick everyday and yes, I cried a couple of times when we had to rearrange our plans because of my health. The day after I got home from the trip, I slept 15 straight hours. Would I do it again-- heck yeah! I was a difficult trip, but at least I went and didn't miss out on things I would have done pre-POTS. Yes, there were many, many times when I just wanted to lay down and be sick, but with a little help from a lot of medication, I made it and along the way, I made a lot of memories. Unfortunately, one memory I wish I could forget was UK's loss to UConn!The one thing I've learned with POTS and vacations is that the vacation will be impacted by POTS. The bad news is that you don't know when or where, but a POTS relapse probably will happen. When I go on vacation, I just try to act smart by following a regiment will promote better POTS health, through medications, limited exercise, rest, etc... However, as we all know, a POTS relapse can occur regardless what one does. Thus, I make sure our vacation can be flexible. Last year, I slept in the car while my husband and daughter took a 3 mile hike. I use to enjoy long hikes; now, I can't say I even miss them since I feel so tired. Last year when we went to Arches National Park, I stayed in the motel while the family hiked during the day. I hiked in the evening and bought a camping stool that I could sit on whenever I got out of breath. Everyone had a great time!I refuse to allow POTS to stop my vacations. They'll just be a little different. Maybe not as active, with a few more breaks, but still a vacation! Quote Link to comment Share on other sites More sharing options...
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