With this unusually warm March, we were able to go camping this weekend - just a brief 24-hour getaway, but it did us all a lot of good. It had been a full year since we'd had our pop-up camper out of the garage! That was partly due to being busy and mostly due to Jamie being so sick the past year. I wasn't sure if the camping weekend would be too much for him, but I really wanted to get him out of the house so he could enjoy this gorgeous weather. We went to Elk Neck State Park in Maryland, a beautiful park just 45 minutes from our home. Within an hour of setting up, Jamie smiled at me and said, "Mom, this is really lifting my spirits." That made all the work and all the worries worthwhile!
Jamie mostly took it easy and spent a lot of time reading - in the camper and in a lounge chair outside. I worried about him walking back and forth to the restroom (I know it's not much, but he hadn't even been out of the house in weeks) and I told him he could drive, but he managed OK.
On Sunday, we even took a little walk down to the beach along the Elk River. Craig and his friend had been building a raft all weekend, so we went to see it. Ken and I drove Jamie to the closest spot we could find to the trail, and he managed the short walk.
Jamie was worn out later on Sunday and Monday (but no school on Monday anyway), but he actually made it into school for 2 classes today - that is a huge accomplishment after weeks on the couch. I am hoping we have found the right balance to allow him to function. I have been frantically poring over his records, trying to figure our what helps and what hurts, and trying all sorts of new things. I backed down on his dose of Immunovir - I saw he did better at the start when he was only taking 2 pills a day, so we went back to that dose. And he started B6 and Spirulina, two supplements that are supposed to help with the horrible herx reaction he's been suffering from due to his Lyme, bartonella, and babesia treatment. We will see what tomorrow brings.
Meanwhile, we all enjoyed our little getaway (don't worry - we used lots of bug spray while in the woods!!). It was a nice reminder of one our favorite family activities, and we are all looking forward to spring break now.
So Happy for you guys - nothing like getting out of the house - you may want to research Liver support for your son's reaction - castor oil packs - is a really easy way to help the liver deal with the die off burden.
ReplyDeleteThanks, Heather! We are doing a LOT for liver support for Jamie - that's been our focus for months now. He takes NAC, milk thistle, SAMe, parsley & burbur drops, lemon water...but I hadn't heard of castor oil packs so I will look into that. Thanks!
DeleteSue
Oh! I'm so glad that all of you had such a lovely time camping!
ReplyDeleteAnd, I hope that Jamie continues to feel better and better!
Thanks, Sarah! he is wiped out this morning because he had trouble getting to sleep last night, but hopefully, he will bounce back quickly.
DeleteSue
I'm so glad you've managed to get a way for a weekend - it always lifts your spirits doesn't it! We are going away soon and I cannot wait, just a few days makes all the difference :)
ReplyDeleteI take a supplement called Acetyl-L-Carnitine and that really helps me with my cfs/me, I don’t know whether you’ve heard of it? :) http://ami-lou-theheartofme.blogspot.co.uk/2012/02/supplements-and-light-box.html - I wrote a short post about the supplements I take. Hope this helps a little :)
Hi, Ami-Lou -
DeleteYes, we have taken Acetyl-L-Carnitine for many years, though I didn't notice any difference with it. It's just one of those things we stay on because the research is so compelling.
I will go check out your blog post - I am always open to new ideas!
Sue
Hi, Glad you guys all got a change of scenery and Jamie did ok.
ReplyDeleteLove Leanne
Congrats for getting out! that's so good for the soul - I'm sure for all of you. I'm dying to get out no matter how sick I am once it warms up a bit here in the north...spring is early, but not quite what you've been getting in the south. I hope Jamie doesn't crash too bad from the outing.
ReplyDeleteUpnorth - I know you are dying to get out as well - I hope you will have the chance soon. Yes, being outdoors is soothing to my soul :)
DeleteSue
Sound like you had a great time! I'm worried that going camping with my family will make me more fatigued than normal and as I am starting college this year I'm nervous that going camping and being more fatigued will make me miss the first few days
ReplyDeleteHi, Caitlin - this is an older post, but yes, we always enjoy camping. For me and my older son (who has ME/CFS and Lyme and is also in college!), camping is a time to relax. I find I actually feel BETTER when we are out camping - no phone, no computer, no electronics - it is a time to just chill out a bit and slow down. Spend your camping trip with your family relaxing - reading a good book, enjoying the campfire - and be careful not to over-exert with hikes, etc. My son and I always bring folding lounge chairs along so we can lie down to read or sit around the campfire at night. I also find I go to sleep earlier when camping so that helps, too. Just take things slowly and don't over-exert and you should be fine. Will your family understand if you don't participate in all the active stuff?
DeleteBy the way, for more tips on managing college and how my son got well enough to do it, use the "Search this Blog" box in the left-hand column to search for other posts dealing with college.
Good luck!!
P.S. We have Facebook groups for teens/young adults with ME/CFS and related illnesses and also for Parents of sick kids - you can search for that post with the links, too, by searching for Facebook.