Hello everyone, I've responded to a few posts on here and PM board but I am mainly a lurker. I have a question that's really starting to make me doubt my sanity. I feel like I worry so much about getting a flareup that I am losing out on my life. My pain and sleep is not being well managed at the time which I know is part of it. My example is we are leaving on vacation tomorrow which involves 2.5 hours of driving tomorrow, 3.5 on Saturday (as well as an outdoor family reunion in 100 degree temps and I do not handle heat well) The last vacation we had I ended up in the ER because the flair was so bad and in my chest, my doctor wanted me to go to make sure I wasn't having a heart attack. Needless to say I am a nervous wreck about this vacation and something similiar happening. Am I the only one who feels this way?
hope i am not missing you as you leave. forget about the flare up possibility. if you are going to have fun go have it and deal with the flare if it comes. getting excited can throw your body off so try not to be.
i never allow myself to get excited about anything. the energy goes too fast if i do. i save it for when the event happens. yes, it takes some of the fun out of it but it's worth it to have fun in the moment.
stop and stretch often. have fun!!!!
p.s. you are not crazy! giggle.
Last edited by bluelakelady; 07-06-2012 at 07:26 AM.
The Following User Says Thank You to bluelakelady For This Useful Post: Prettyinpink81 (07-06-2012)
Thanks for the response. I guess the main thing that is worrying me is my fiancee will not be able to join us until Sunday night so its me with 2 small children. I have my parents to help out but they are getting older so I don't want to put too much responsibility on them. I've been googling some tips on doing a lot of driving and how to tolerate heat (I have a feeling the family is going to think I am anti social as I will be sitting inside enjoying the AC but I figured that beats heat exhaustion. This darn disease drives me crazy at times, my last appointment my doctor wanted to up the dose of my painkillers and I declined but I think its time to bite the bullet so I can at least try to enjoy the rest of the summer
the way i see it the meds are there for when i want to have fun. i don't like taking them as often as my docs would like.
a cold towell around your neck for quick trips outside to visit helps. travel during nap time if you can so the kids will crash out. oh, and as a grandma i can tell you we are never too old to entertain our grandbabies. we may get too sick or weak but never too old. giggle.
have fun. you will do great. and quit setting yourself up for stress. it will go the way it goes. relax and go with the flow as best you can.
Hi pink, as always blue has some good suggestions. Here are a few of my thoughts.
I think you first need to get control of your sleep. Even if it means taking melatonin or benedryl at first. Once you get good sleep it'll help with a few things. Pain, energy and your whole thought process.
Stop obsessing over the fear of triggering a flare up, that stress alone could cause you to flare. What I find handy to clear the mind when it goes into overdrive is taking deep slow controlled breaths. Focus on your breathing and feel the stress of traveling slip away.
I'm sure this is to late and you're already on the road, hope you found/find a way to enjoy yourself.
oerfect advise ladies. I agree 100 %. We have to live, and live outside of a cocoon for as much as possible. if that time comes, OK. But don't impose it on yourself out of fear that it will happen. Hope the trip is good. I hate it if I can't make it on a family trip, and then I hear about how great it was. Don't tell me that!! Lol.
Thanks everyone for the responses. I was only able to stay at the reunion for an hour or so due to the temp being 100 degrees but my parents kept the kids so I had a peaceful drive the rest of the way to the shore. I am trying my best to relax and it certainly helps feeling the sea breeze and listening to the seagulls. I do take melatonin for sleep but I've become immune to it so I plan on trying something else and I decided for the sake of enjoying myself to take the pain meds as prescribed as opposed to trying to tough it out.