Syndrome

I have a syndrome. I don’t know which one. I just know that I have a collection of really difficult symptoms that strongly affect my life negatively and have put my whole life on hold.

I don’t have a pretty little box to put my symptoms in because I have not been diagnosed yet. Why? Because I am afraid. I know that my symptoms are real and how they feel inside to me. I know generally what I need to do when my symptoms come on, but the remedies make me look lazy and irresponsible and the people in my life challenge me and ask me to do things other than what I know I need to do in order to be more healthy. I feel lazy, shameful and irresponsible when I feel like “rest” is a need and not something I want. I typically succumb to what other people need me to do even if all they see is me lying around and finally getting up and doing something.

I know when I need to leave someplace.. when I can feel my resources waning. When my internal “gas gauge” has hit ‘E’ and I typically end up needing to stay well past that point. It causes me to feel panic about going anywhere or doing anything because I don’t feel like I have any control over the cut-off point.

I am so frustrated that I am bordering on the level of futility. I don’t know if I have chronic fatigue syndrome, fibromyalgia or some precursor to some awful disease.. low thyroid, anemia, or some gawdawful fatal thing I haven’t discovered yet, but what I have is real and I can’t make anybody I know (except those that also have a chronic syndrome) understand.

I have had blood panels ran already. I have an appointment for a sleep study and a huge packet of information to fill out for a pain management center.

I feel utterly and inexplicably alone and fatalistic.

People continue to (inadvertently) guilt and shame me for my inactivity and lack of desire to get up and join the party.. do more.. be more.. and do more for them. Constantly. People don’t understand my utter debilitating exhaustion even when I get a ‘full night sleep’. I realize I stand on the precipice of losing every single person in my life because of this collection of annoying symptoms that now run my life. I stand to lose my family, my career and all of my friends. And I struggle with guilt and shame over that too.

It is hard to be a (formerly??) enthusiastic, energetic, capable, go getter type of person who makes things happen and says ‘yes’ to everything who, for the last almost year or so, cannot seem to do anything at all. And when I push myself and do it anyhow.. I suffer for weeks following it.

If I had some horrible disease with a label or a visible disability would people understand better? Probably not. I suspect that those people struggle with guilt and shame too as they look back on what they used to be able to do and be.

I wouldn’t want to be in my life right now. I don’t want to be in my life right now. I wish I knew what I needed to do to make this all go away. What am I not doing.. what am I not eating, talking as a supplement.. what what what should I be doing differently do make this go away? People who have a syndrome tell me it never goes away and that makes me more depressed and fills me with more guilt and shame and dread over the inevitable loss of everyone and everything in my life.

I have nothing to say to make this sound hopeful or have any sort of point right now. I am just feeling fatalistic and filled with utter dread. And I am bone weary exhausted after 10 hours of sleep.