I hear ya! I'm getting better at saying thank you, no - when I don't really want to go somewhere or do something. That way I have more energy for the things I really do want to do. I also try to rest for a couple days prior to a big outing to charge my battery, and then also plan some recoup days following an event. That helps for sure, but I agree that the struggle is real. Hang in there!

One thing that helped my family was having them read 29 Gifts. The author has MS and it's her story about her diagnosis shortly after her wedding and her path to happiness with MS. It's a very moving story and helped my family understand some of my current and potentially future challenges. XX

I've been there, too. When first diagnosed, I did not want anyone to know outside my family and with 3 kids in school, I would just 'power through' and suffer for days after. It was hard to say no when you're used to being a volunteer and worked at home. Then I started meeting others with MS - another mom from my kid's soccer team, a mom at another child's school a teacher. I realized that I did not have to do it all - that I needed to concentrate on keeping myself as functional as possible. This meant letting go - of my image of being a super-mom, of too many tasks, of the fear of asking for help .

The first few times I said "No" was hard, but also a huge relief. As moms, we are used to taking care of others first. However, I found that integrating my care in with theirs, I was able to pick what was most important for me and my family - myself.

Sometimes it requires educating your family and friends about MS and what it does to you personally. Meeting others with MS was helpful as we learn from and commiserate with each other.

Thank you KTontherocks for your recommendation of 29 Gifts. I am reading it now and finding it moving as well. Wish I could write like that!

https://www.medhelp.org/posts/Multiple-Sclerosi...

How I explain it to others. This article uses lupus, but feel like it works for ms as well (and probably others).

My circle has shrunk incredibly so. Took me a while (years) to accept it. But I now realise that what I have left is QUALITY! And I love them all!

My circle is much smaller. I've got like 3 people who understand. The rest have drifted away. It sucks. But i find i really appreciate who i do have.