I wrote this over a year ago… and it’s still true. I feel despair often, but I am still here… trying and overcoming everyday that I don’t give-in to the “suicide” disease CRPS. Hope is a powerful thing and Love that much more. I want to thank all the people in my life that haven’t given-up on me. And, just know that I love you.
I have hidden my illnesses as much as possible. I have pretended to be fine when I am not. I can see it in your face, that you don’t want to hear about my symptoms and struggles, so I say I’m fine. I’m fine.
And, I get angry. You not only don’t want to hear about it, but you also think that if I’m with you and look good on the outside that I must be good, period.
You don’t understand, and I certainly can’t make you. I just want to tell people I have M.S., Parkinson’s, or maybe even Cancer—then you would be careful with me. I seems that because you haven’t heard of what I have, it doesn’t exist.
I don’t want your pity, but I do need your fellowship. I am having a hard time getting to church, or going to the store. There are so many things I used to take for granted. Like walking, taking a shower, or sleeping through the night.
I tried connecting with people who share these illnesses, but it is hard to get sick people to do anything together, especially to go anywhere on a specific day or time. The illnesses are just too unpredictable. The logistics fall apart.
I have had a very hard time trying to cope every day.
I have tried to hold it all in, and can’t anymore. I have performed the “normal person” routine when asked to go somewhere or do something, only to find myself in bed for days afterward. I get so desperate to be with you, so when the opportunity arises I say yes. I walk as fast as you and as far as you, only to suffer for it later. I try to stay upbeat and encouraging to you, and I get emotionally spent.
It’s not your fault. It’s mine. My question: How does one live with debilitating illnesses, and still find or function with some quality of life?
I know this is all terribly negative, but it is the truth. I had more hope when I was first diagnosed. I had to or I surely would have lost it. I tried to fake it ‘til I make it, but I am tired. It’s not just you, it’s my family too. Shoot, even I don’t buy it when I was fine a minute ago, but can’t complete a sentence now.
And, I am afraid. This decline is frightening. Every time I get a new medication, or must take more tests, or get a new diagnosis as things get worse… it is hard even for me to believe. WTHeck!? If I had just one thing that I can own and deal with… But, it is constantly changing. It is surreal.
Well, above it all, I am sorry I lied to you.♥
Aha! Jana 