I had the most remarkable lunch today. Well, the salmon sandwich was excellent, but I'm actually referring to the company. I coordinated a lunch with a bunch of moms in our local area who have kids with CFS, and it was so wonderful to get together with them all!
There were five of us today (I know of another three locally that I'll try to include next time). All of us live within an hour of here, and all of us have at least one teen with CFS and OI (and other assorted ailments like Lyme). Two of us have two kids with CFS. I had met the two moms who live closest to me before and knew the others from online, but none of them had ever met before.
It was so much fun! If it weren't for my nap, I think we could have talked all day long and never run out of things to say. It's such an amazing experience to be able to talk about what we're going through and have everyone present totally get it. We talked about doctors, treatments, school, family, and more. They are all strong, intelligent, caring, remarkable women. I feel blessed to have been able to meet them all, and we agreed we'll have to get together again soon.
I left there just feeling on top of the world. What a powerful feeling to connect with other people living with the exact same challenges as us. I can't wait for our next gathering!
P.S. I feel the same way about all the people I've met through blogging. Wouldn't it be amazing if we could all get together and have a little CFS bloggers convention (with cots set up all over the room and afternoon nap time, of course)?
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I wish, it would truly be amazing and good for you for organizing the lunch! Sounds like it was wonderful. Salmon sandwich? YUM.
ReplyDeleteThis is so great, Sue. It is sad that so many in your surrounding area have CFS and other illnesses, but it is super that you could connect and share.
ReplyDeleteMy question: why weren't there any dads there?
ReplyDeleteGood question, David! I guess they were all at work. It's usually the moms who stay home with the sick kids. But we did talk about getting the whole families together sometime!
ReplyDeleteSue
This is so wonderful, Sue. It must have been so great to share with people who are living in the same situation. I'm about 25 minutes from Sacramento and there's a CFS support group there that meets in the evenings. I'd love to go, but I can't even go out in my smaller town after the late afternoon. It's kind of a catch-22 for some CFSers...the idea of a support group where you have to leave the house.
ReplyDeleteBut, of course, not all the moms there had CFS. Were you the only one?
I'm very excited for you. Did you organize this? (You can see how excited I am -- so full of questions!)
Here's a google map where we can add our locations... flocking together all over the world!
ReplyDeletehttp://xmrv.me.uk/me-cfs-global-map.php
D.
You know this is a great idea. I wonder how one would go about find others with CFIDS in their areas. I actually can't think of one person I know with CFIDS here.
ReplyDeleteAwesome idea and what a great thing to do, Sue! Hats off to you!
Toni -
ReplyDeleteyes, I know what you mean. It took me years to finally gather up the energy (and find the time) to attend a support group meeting and when I did..no one was there! Turns out the 2 DE CFS support groups had both called it quits.
Yup, I was the only mom with CFS, but - of course - the others were very understanding of my limitations!
I did organize it. I had met two of the moms before - one was referred to me through Jamie's middle school, after he left, because the wonderful guidance counselor there gave them our name when she found out their son had CFS, too. One was referred to me through one of my best friends who's a vet, when the mom burst into tears during a vet appt because she was so stressed about what was going on with her daughter. One contacted me through my blog, and another I met through the Pediatric Network, a great online list for parents of kids with CFS/OI/Lyme. And there are 3 more I'd like to include next time - one I met at Craig's soccer game last fall, and it turned out that her daughter - who went to middle school with Jamie - has FM and lupus (and maybe Lyme). The other 2 cornered me at a friend's graduation party last summer when our mutual friend told them they should talk to me about their teen daughters' mysterious illnesses.
We are everywhere!!!
Sue
D -
ReplyDeleteThat map is so cool! I will definitely add myself to it. Thanks!
Dominique -
ReplyDeleteI haven't actually met any other local adults with CFS in person yet. I think it's very hard for us to find each other because most of us live a very isolated life and don't leave our homes much. When we do go out, you can't necessarily tell we're sick!
I have either e-mailed or talked on the phone with 4 other adults with CFS here in DE - maybe that should be my next project!
I started with the Moms with sick kids because some of them felt really desperate to meet someone else dealing with the same challenges.
I've discovered others with CFS locally through various sources - my blog, my doctors, or mutual friends. I've thought of putting an ad in the paper for a CFS meeting but haven't had the energy to undertake that yet!
Sue
Wow, Sue! This is so cool! I am really happy and excited for you and "the gang!"
ReplyDeleteGosh, now I want to find other families with teens with Aspergers, like my oldest has. We didn't even know until a few years ago. We were told it was Selective Mutism because she never spoke in school until she got into high school.
From little acorns, mightly oaks do grow!
ReplyDeleteWhat a super day!!! I live in the West Palm Beach area and only met two people with it years back. Both have moved now. I'm surprised in an area this big that there's no support group, no doctor treating it, or any way to find others.
ReplyDeleteMy voice and brain only last for about 40 minutes tops, though, so gatherings would be hard. I can manage an easy going person one on one.
That would be fantastic!
ReplyDeleteI have a pen pal that has CFS and is the same age as me. It makes such a difference when talking to someone who is going through the exact same thing. Much like our blogs!
Your post about kids made me wonder, are their any organizations in the US dedicated to young people with the disease? Someone recently pointed out a group to me in the UK called Association of Young people with ME (AYME - http://www.ayme.org.uk/). If there's not one here, someone should start one!
ReplyDeleteWhat a great post. So nice to find support. A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: http://endfatigue.com/. It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.
ReplyDelete