Oh I love love love school holidays!
On school holidays our girl doesn’t feel she’s missing out on things her friends are doing (school!) or somehow letting the side down by not doing what every other 12 year old is doing (school!).
Right now I can see her through the kitchen window working with a friend on an experiment involving turning a glass full of water and covered with a piece of cardboard upside down. Her younger brother is filming them. Ooops, didn’t work that time and water everywhere! Much chuckling.
I haven’t seen her this sparkly for over a week so it feels great. Her friend is here for a scheduled 2 hour visit to make up for our girl not getting to her party last weekend. Birthday parties are pretty difficult as so much energy everywhere = exhaustion. We’ve worked out a tactic whereby I take her for the last 45 minutes so she can give a present and sing happy birthday. Works well mostly but just didn’t get to this last one.
This last crash seems to have gone almost as long as the post 7km walk at Uluru back in August. Today our girl got back on the exercise bike for the first time since last Wednesday and did 10 minutes. (Back down from the 15 that may have caused the crash) Her heart rate shot up to 130 at one point but only very briefly, the rest of the time it hovered between 100 and 112…..weird huh?!
I have yet to check out the monitor for myself..which I will do tonight…to rule out that it’s the monitor not working properly rather than her heart! I suspect all my experienced CFS bloggers out there are thinking ‘no that’s a perfectly normal OI result’! At least we appear to have found a heart rate monitor that fits! Thanks everyone for your suggestions. In the end I just fiddled around with one of the ones we had. Provided it works on the control group (me!) tonight we’re set.
Same as previously she also records a 110+ heart rate after a shower. I did that one manually hence the approximation. It’s weird feeling her little pulse beating so desperately after such a minor activity.
Aaah water glass upside down experiment has worked and been recorded for posterity. Learnings? If friend gets thirsty and drinks the water the experiment doesn’t work! Hehe!
Hope you’re having a good day too!
parentingcfs 
I smiled just reading your post because I sooooo get it. School adds so much pressure to an already difficult life. My son broke down in tears last night because he finally went back to school for 1 day, then crashed hugely in the evening. He was just sobbing because he’s missing out on so much and so desperately just wants to be a normal kid.
Anyway, reading about your daughter and her friend made me smile, as well as your word, “sparkly” because I know just what you mean by that.
Before I started OI medication (beta blockers), my heart rate would go up above 130 when I showered. Showering is a double-whammy OI activity – not only standing up but also in a warm environment. Heat can bring on terrible OI episodes (it dilates the blood vessels), so encourage your daughter to keep her showers short and warm-ish, not too hot.
Glad to hear the heart rate monitor is helping. Once you get familiar with her own ups and downs and what activities affect her HR, she won’t even need to wear it as much. It really helps to define limits, and I’m glad you’re using it as a gauge to help determine how much exercise she can tolerate without crashing. That should help to assuage your concerns about the exercise therapy, right?
Thanks for the smiles – I needed them today!
Sue
I’m glad you enjoyed my post Sue and I’m so sorry there was sobbing at your place. How you cope feeling unwell yourself is amazing. The smiles we get from other people’s good days helps get us all through this I think.
Here they seem quite big on kids with CFS choosing their favourite subject/s when they hit high school and just doing them. So we have a friend who is just at school for English and lunchtimes. Monday he has no English but sometimes goes just for lunchtime. Do you have a similar set up with your school? I need to write a post on my thoughts about schooling…even though I’m trying to live in the moment rather than plan!
Yes the heart rate monitor will definitely help with my GET concerns.
Hope today is a better day for you. Glad I could repay with smiles a tiny bit of the knowledge you’ve gifted me. : )
It’s so wonderful to hear about the good days. You really have to celebrate those moments, don’t you? I just wanted to mention that Sara has been taking Florinef with much success. Her cardiologist wanted her to adopt the water/salt regime prior to taking Florinef. Sara explained that she had already been consuming mass quantities of salt and water, so her doctor prescribed the Florinef. It helped her almost immediately! She feels like the Florinef allows her to stay on her feet longer and seems to reduce (a little) some of the other symptoms. Sara also uses a fingertip heart rate monitor. This or the ring monitor may fit your daughter. We purchased the monitor from Hammacher Schlemmer.
http://www.hammacher.com/Search/Default.aspx?query=heart%20rate%20monitor
May your daughter (and you!) have many more of the good days!
Jen
Thanks for leaving a comment again Jen and for letting me know about Florinef. It’s great for my husband to see all this anecdotal evidence (as well as me) because he doesn’t have as much time to read as I do and he is rapidly coming around to the Florinef theory now.
I also really appreciate the fingertip monitor info and leaving the website link. I’d been thinking there must be an easier way…..!
Best wishes
I’m glad she is having some good days. They are so refreshing! Stay diligent! My prayers ae with you!!
Thanks for this and for dropping by Keena. Wishing you many good days.
So great to catch up on how it is going for you. I miss you guys and know exactly what you are talking about in terms of Harriet sparkling. It seems to me, Annie, that you are being an amazing mother and doing everything you possibly can, so just remember that and don’t be hard on yourself (though I can imagine the psychological warfare you must play with yourself in your own head – hard to avoid!). See you soon! Love Sarah.
Thanks for reading the blog Sarah! Looking forward to seeing you. x