The game of let’s pretend started early.
Back when I was first diagnosed with NDPH (8.5 years ago), my doctor was so lighthearted and optimistic that I walked out of his office thinking I was just a few pills away from relief. Pure fantasy.
Six years later, I was diagnosed with Lyme, and all I received was a phone call from the office nurse letting me know that I needed to pick up my prescription and take my meds for the next few weeks and all would be just fine. Science fiction.
Both doctors (and many others along the way) have been dishonest with me. They left out some very important information about both diagnoses. It wasn’t until much later that a neurologist told me the truth: sometimes NDPH never goes away. And sometimes it does. I wasn’t until I did my own research that I discovered that when Lyme isn’t treated immediately and aggressively that a person may have to continue fighting some symptoms forever.
I’ve been quiet here for a while now. I haven’t been sharing my journey, mostly because I haven’t had any desire whatsoever to take a honest look at how I’m feeling.
It’s been 3 years since my Lyme diagnosis. At this moment, my head hurts like hell. I can’t keep track of how bad I’ve been feeling because my brain is cloudy and forgetful all the time. I’m exhausted. And if I were to let myself go there (which I won’t) I could be absolutely hopeless.
I have no idea what to do next. I was better for a time, but slowly it all came back.
I know that I am lucky. The simple fact that I’ve had a break from the pain at all makes me lucky. I know many or most of you have not had that much needed break, but having it, getting your life back only to have it slowly slip away again…
It’s hard too.
I have nothing to say about treatment options. I have no idea what I will do next.
I’m not giving up. I’m trying to be optimistic. But I also have to stop pretending that I’m just fine, even if the only place I can admit that I am a total mess is here, on the blog.
Time and pain have both taught me to keep quiet and pretend that all is well. To the rest of the world, I’m going about my business. I’m getting ready for the holidays, I’m buying Christmas presents for my girls. I get up in the morning and push through the day and no one is really the wiser.
I don’t want to be that person who can’t manage work or social events because of pain (but I am). I don’t want people to know how hard it is. I don’t want to deal with their looks of sympathy before they turn away.
So now you know.
I’m still struggling to keep the pain from impacting my life. And it feels like I’m loosing the battle. I wonder, if I stop pretending that I’m okay, will things get worse?
Do you pretend that NDPH is just a bump in the road? A minor inconvenience? Or are you totally honest with yourself and others?