I feel like I was blowing smoke up my own ass in that last post. I’m tired all the time. I’ve been going to the gym two or three times a week, but Adam broke his foot, so keeping that up will be a challenge.
I’m tired of constantly beating myself up or thinking I’m not doing a good enough job. The kid’s healthy and happy. The house may never be clean again, and if I’m able to see friends ever, that’s a good thing.
If I can find curtains (forget the lofty goal of making them), I’ll be happy.
If I keep singing to my son, I’ll be happy.
If I manage to roll up a character for a play-by-post D&D Game or just jump into playing Brikwars, I’ll be happy.
But I can’t do everything all at once. And that’s fine. I’m playing the long game, and all it takes to win is to not give up.
In It For The Parking 
Rachael, you are doing great! A new mother never has enough hours in the day or enough energy. As Grandma would say to me… “the house will always be there and keeping it clean is only temporary.” What matters about your post most to me is that you realized that you have evolved and that over time you have taken your seizures and fatigue and incorporated them into your way of being. The seizures and fatigue are no longer the sole focus. You have adjusted and you manage them as part of your day like needing to take a nap or eat, etc.
You are right. You have lofty goals. You can’t do it all at once. Roman wasn’t built in a day… but what you are saying in your post is that over time, you will incorporate things that you love to do with your music and art, etc. into your life again. No pressure. Just a realization and a desire to incorporate these things into your life, again. Henry is too young for you to pressure yourself on being a good role model. He wants your attention, love, warmth, patience and praise. You are giving him all that and more. As he grows up his needs will change which will free you up to do more of the things you love. You will come up with a healthy balance. You can incorporate one or two things you love to do on a weekly basis. It will all come together. You will see.
I love you tremendously and am very proud of you!
Thanks, Mom. I really appreciate it. I’m mopey as hell right now. Hopefully, I’ll feel better later.
I read your story, and feel for you. I too have MS. I’ve had it for 18 years. I too had horrible side effects with tecfida. You might want to try LDN, it might work for you. Bests wishes for you and your family.
Thanks, Maria. I’ve read up on it. My neurologist doesn’t think it would be helpful for me. Right now, I’m not on any DMD and am doing better than I have in years.