Coping with Anxiety Before a Concert with Health Challenges

Hi, I have had an illness for 32 years very similar to Crohn's disease, but CVS (cyclical vomiting syndrome). I can vomit for 3 to 4 days nonstop. Due to this, I lost loads of weight, got very poorly, and ended up with a perforated bowel; hence my twins, Reggie and Ronnie. They cut that much out. I am special and got two. I now have CKD 3a and am struggling with hydration and something called SMA because I am skinny. The artery in my stomach is not protected by any fat. I have a concert in March and am looking forward to it, but I am very anxious. Any advice, please? I am going to get a sunflower lanyard so I can give them a heads-up that I may need some help, but I don't know how to not be nervous. My son is coming, so I am not alone too. Thanks, any advice helps. xx

Hi K,

Wow... never heard of anyone having CVS for 32 years! That might be a record! Not sure I understand how CVS could cause a perforated bowel, but regardless, that sucks. By SMA, are you referring to spinal muscular atrophy... or something else? Hydration does sound like a challenge if you're vomiting continuously... as does eating. Do you get IV hydration at the hospital when this occurs? The Sunflower Lanyard is a good idea, and I guess it's more popular and recognized over on your side of the pond. Make sure you know where the nearest hospital is too... just in case. It's going to be hard not to be nervous, but try to make the best of it... and have a great time!

;O)

You have a few weeks to work with and build your confidence. Is it possible for you to go out most days? Start with short bus rides, even if only 1 stop, and go further as your confidence grows. Get off at a local supermarket or shopping center and have a walk around.

Wow, you have been through a lot. I have CKD 3a as well. The best thing for that is to carry a bottle of water with you everywhere you go. I am glad you have a support person going with you to your event. That should help because he might be able to spot problems even before you do. Have a backup plan, like if you don't feel good, how to get out of there fast. Maybe decide on a signal between you and your son that can show him you aren't doing well or feeling well.

Try to think positively as if things are going to go great. The power of positive thinking can be amazing.

Sma is superior mesenteric artery syndrome because I am so skinny apparently 😔 xx

My Ostomy Journey: April | Hollister

Thank you so much for your advice. Yes, it's a good idea to have a signal in case I do need to get out, and yes, I am positive thinking. I always have luck 😊 probably how I have survived xx 😊 x

Thank you, I will do xx. I do go to the supermarket and things; I just haven't been out in social circumstances.