Reply to Feeling so blue...How to live with DD's chronic illness?

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[quote=Anonymous]A PP here. There's been some great suggestions here. Do not forsake vacations. You can make them work.  We have learned to be very creative about stuff because we are having to think outside the box all the time with these infections.  You can do the same - it just takes practice and you are probably doing it already with the illness.

Definitely make/take time for yourself to get away from it all - I'm back to walking along the river/riding a bike as much as possible when I can get away - just little things can make a difference - like getting up earlier in the morning for private time.  You just have to have a break. Thank God for internet groups - they have been so helpful for information and support - I just try to make sure I don't get bogged down with them.

I think most of us would agree, it is devastating and not having any kind of normal takes a huge toll. We have literally been googling medical emergencies to determine if we head to the ER for breathing issues. Ugh.  I'm sure others here are in a similar position with situations changing minute to minute out of the blue.

Our DK's attitude has helped us a lot because DK says "I'm just not going to allow this to rule my life". DK is pulling us along - partly because DK probably doesn't realize the full extent of what a lifelong battle this will be and it likely will hold him back from some personal goals.  Also we really do take the good days for all they are worth.  I hope your DD does have some better days.  It is SO hard to see our DKs suffering like they do.

Has your DD tried alternative therapies like acupuncture?  We have found some that have made a difference with our situation.  Again - thinking outside the box.

Good luck OP.

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