Post-PANDAS Plans

I need to get a life.

No, really. I'm all about PANDAS and Lyme, Lyme and PANDAS. Get me on a good day and I can talk your ear off about it all. Well, you already know that if you're reading my blog. I have to practically stuff wool in my mouth when I'm in the vicinity of non-PANS people.

It's too much. We've been living with this for years now. Some days are great, others are as hellish as you can get. Why me? I have no freakin' idea. I do wonder what kind of dreadful things I must have done in a past life, or if re-incarnation doesn't exist, if this is a type of hell. Because when my kid doesn't want to live anymore, that's what it feels like.

What happened to the days of performing on stage, of romance, of trips overseas? Those were filled with joy, excitement, plans, adventure, happiness. And who says those days are done? (Well, we're out of money, but we're still living in our house, so being unable to travel to the UK for a long weekend is really a first-world problem when we are paying for some of the best doctors for our kids, right?)

Doesn't the definition of craziness include doing the same thing over and over again, expecting that you'll get a different result? 

So, it's time to break out of my internet habit of support groups. It's time to break free from my book addiction. It's time for me to start working again on my creative writing. Easy to say (write here) and harder to do.

Ever since going on doxycycline, I've had much less brain fog. I still fatigue but in a different way. My brain says it's ready to move on, to make some positive changes to show for these years. The wrinkles around my eyes are here to stay (hey, can't afford a plastic surgeon!) and I'll never see my 30s again. 

It's also wintery, blustery cold and I can't bicycle on ice-covered roads. Nor do I want to. It takes every ounce of strength to get out and walk a few miles with a great friend (who, by the way, puts up with all my PANS-ish chatter.) 

When my kids were babies, I'd take my PowerBook and go to Starbucks to write on the weekends. Nowadays, thanks to being tired, I spend a lot of time on my bed, messaging with friends, pinning articles onto PANSlife on FB, admin-ing some groups (and that's not that difficult.) I can do more. I need to do more. My life is not fulfilling enough. 

I need a diversion--out of PANDAS hell and into something special. Sure, if I had time and money and energy--Lyme does zap my energy--I'd take all kinds of classes and lessons. I'd travel and eat gluten in Italy and France again! But that's so not happening. My travel for the last couple of years has been through my books--adventures in faraway lands and times. 

It's time to do more for myself. Ideas? I usually feel great when I'm with friends, some of whom I haven't seen as much because of these diseases. I still want to write a book someday--and see it published--hardcover! I need to do fun exercise. I like to wander the streets of NYC.

So...looking for cheap ideas. Alternate dreams to fulfill. Because it's time to pick up and get myself going again.

Comments

[Lisa Hart]

Great blog! I SO feel this way. You know what's cheap and makes you feel like you're on a quick fun vacation? A zumba class. I was totally into it before my daughter got sick. And I miss it every single day. I got back there one day last month, and I smiled for days. The energy, the music, the smiles, the NO PANDAS allowed b/c you're trying to just not fall over. Just a thought..and a goal for me as well.

[Julie]

Lisa,

You are an amazing writer! I just discovered your blogs and I love your writing! And I so, so get what you mean by the life you used to have- the one that involved biking, travel, eating at fabulous restaurants, dancing, singing, etc......and it can be so sad to think about what PANDAS/PANS has taken from us and from our children. Have you thought about putting an outline together and taking some of the blogs you've already written, plus a few more to make a book that will help PANDAS/PANS families?

I'm a mom with two kiddos with PANDAS, one with PANDAS/Lyme and reading your blogs is like a breath of fresh air....sounds trite, but to have someone so amazingly articulate what I'm feeling, what I've SAID and felt is great! Keep writing! Your hard-cover book could very easily be a compilation of your wonderful blogs!

My husband has written a few books and I'd love to connect you with some self-publishers and could recommend a good editor as well.