Misunderstood

Today I feel misunderstood. That’s the word that keeps coming back to me, so that’s what I’m writing about.

I’ve been flaring for about a month and a half now. Not every day, and that’s part of what makes it so hard. It hits one day, leaves me alone for two, and then comes right back. I never know when it’s coming.

My ears ring and buzz. Some days everything sounds muffled, like I’m listening from underwater, and I honestly feel like I’m losing my hearing. My neck feels completely off. My joints hurt. I’m exhausted in that coming-down-with-the-flu way, except the flu never actually shows up. It just sits there.

And most of the time, I look completely fine.

Looking fine and feeling crappy

That’s the part I’m so tired of. Looking fine on the outside and feeling crappy on the inside. I don’t complain all the time. But today I want to.

My husband is amazing. He usually gets it, because he sees what I live with every single day. But even when someone loves you and sees you, it’s hard for them to understand that you’re not okay when you look okay. Today wasn’t one of the days he got it, and that stung.

I’m tired of explaining myself. I’m tired of sitting in front of doctors, describing what I feel, and hearing “no, that’s not part of your disease.” I walk out wondering if I’m explaining it wrong. Maybe I am. Or maybe they just don’t know enough yet.

FMF, NLRP12, and not knowing which one it is

When I got diagnosed, people understood FMF a little better. NLRP12 is so rare that almost nobody knows what it is. And here’s my biggest problem: I don’t know which one is causing most of what I’m going through.

My medication is mostly for FMF. There really isn’t a medication for NLRP12. So I’m treating one thing and still living with something nobody can fully explain to me.

I do want to give credit where it’s due. I haven’t had a fever in a very long time, and I’m pretty sure the colchicine is the reason. That’s fabulous, and I’m grateful for it. But no fever doesn’t mean no flares.

Taking care of everyone

On the bad days, I still feel like I have to take control of everything. Even when I’m just fucking out of it.

I always feel like I have to take care of everything and help everyone. Some days I love it. It’s my family. It’s my friends. I want to be a contributor to my little ecosystem. And some days I just don’t want to. I don’t want to be the strong one. I don’t want to complain either. I don’t know how to hold both.

I have a therapist, and he has helped me so much. But I see him once a week, and bad days don’t wait for appointments. Days like today, I just can’t navigate it.

Not giving up, just tired

I know I have to pick myself up. I know I have to keep going, and I will. But sometimes I think, I can’t do this anymore. It’s so hard. I’m not giving up. I’m tired of living this way, and I needed a place to sit and say that out loud.

Because I love so much about my life. My husband. My family. My friends. This blog. All the great new friends I’ve made on social media. I love sharing my real, everyday life with you, including the parts that aren’t pretty.

So if you’re having one of these days too, the kind where you look fine and feel anything but, you can come here and vent. Drop it in the comments or in the group. I get it. I truly get it.