Lately I feel like I have been a crappy friend.
I forget to text back. I read Facebook messages meaning to reply later and then don’t. I have voicemails on my phone from days ago that I have yet to press the button “call back”.
I’m sorry. I’m really really sorry.
Things have been building up for me this fall and going to New York City to meet with my neurologist and a CRPS specialist really took things to another level.
I know things are not right in my body by how it absolutely miserable it feels day in and day out but I just still wasn’t quite expecting to learn that I now have perfusion on both sides of my frontal lobe, that my nerve damage is worse in ALL areas of my body that we regularly test, that my POTS still isn’t any better. I have gone downhill so much this year that I really shouldn’t be shocked every time we run these tests and scans but I am.
I feel like I am running out of treatment options and it scares me. My case is complicated as my doctors continually tell me and its frustrating to not know how to untangle everything that is going on inside me.
The whole chicken and the egg deal if you will.
I had the CRPS first and then the Lyme came roaring into center stage where my attention has lay for several years and now here this year the CRPS snatches back the curtains and says “No no me first”. All the dumb stuff that is tangled in with everything else: the hypothyroidism, the POTs, the mysterious chronic nausea, the hyper mobility. Chronic illness is much like a play in that you will have your main characters (diseases) but many bit players come too, side effects of larger issues that all join hands and waltz together.
We came home to more really bad crappy scary news. I spent most of last week in a daze. Treading water in the ocean of my mind. Feeling like the world was over before I had even opened my eyes. Laying awake until 4 because everything hurts so much and my brain decides to join in and run me through every possible nightmare.
Some days I just want to listen to what other people are doing it their lives.
I don’t want to talk about whats happening in mine. Tell me every mundane thing that you are doing. If you have a problem, let me help you solve it. Let’s talk about anything other than how right now, in this very moment, my health is rapidly changing before my very eyes and I don’t know where the pause button is.
And then some days I am very ashamed to admit but it is very hard to hear about what other’s are doing.
The lives they lead, the achievements and the successes. On hard days I feel like I watch the world from my living room window with my wheelchair waiting and this desperate hungry jealousy swoops in. I want what others have but it isn’t for me. At least not now. The kids I though we would have, the business I thought I could build and maintain, the physical hobbies I had that I continually pushed to be faster and stronger. You can tell me you had a bad day at work and all I can think “God I miss working.”
Some days I am just so jealous that other people can go for a walk and I can’t. Just to even go for a drive by myself.
This jealousy is ugly and nasty and feels so unlike me.
I am trying to be kind to myself and say “Who wouldn’t be jealous? Who wouldn’t want a more normal life?” Everyone I know who is chronically ill wants what others who aren’t sick have. The ability to do what you want when you want, the ability to use your body however you want without second guessing or tentative fears of what nasty pain is around the corner.
So much uncertainty, so much unknown.
Sometimes I just get into this space where I feel like no one understands though. That I am on my own inside this body feelings things that are incredibly painful and no one else feels it. People tell me to not give up hope and I want to say “You aren’t going through this, I am. Don’t tell me what to do or how to process this. Talk to me when you are 4 years deep and everything keeps going downhill.”
Its not always a good place to be, this nasty headspace of mine. I try to not reside there very often. Lately its been more challenging to not sit in that place and stew and stew and stew.
So if I haven’t called you back, I promise I will. It isn’t you.