I ummed and ahhed about whether I was going to post this blog post today or if I was even going to write it. You see I thought it would be a bit too depressing for my blog, but then considered that it's part of my life and quite a significant part at the minute, so here it is.
Ive been really quite angry today. This has made me quiet with my children and withdrawn. I don't want to hurt anyone when I'm hurting.
It's the pain. Not just the pain, the exhaustion is pretty upsetting to be honest. The pain has been in my chest today. Round my left collar bone area. I'm tired and I'm hurting and I have an appointment in just over a week with the rheumatologist. A man who barely paid me any attention when I first went, yet managed to diagnose me with fibromyalgia. Now he's looking at me for ehlers danios syndrome at the request of my gp. This appointment is now playing on my mind
Will he pay any more attention than he did last time, will he even look up from his note pad to even see what I look like?
Will he listen to all the things I have to say or ask me the simple questions? Am I hypermobile and do I have pain? Yes to both, but eds comes with more and I have more to say. Yet I feel that I have to talk at a rate of knots just to say what I want to say before he looks up and sends me out the door.
If this eds I want to know. I want to know for me and I want to know for my son.
I don't want to be fobbed off anymore. But what if he doesn't fob me off. What if he says yes, it's EDS. I have my answer. Will I then give in to it? Use it as an excuse or will I be able to then get up and fight it and live my life? What will happen to my career?
I don't want this, but I don't want him to say its not either. If he says it's not he won't provide me with alternative answers. He will look at his notebook and say goodbye. Last time he gave me a leaflet and told me to look it up on the Internet!
Today I am tired of being tired. Sick of the sick. Its making me angry and frustrated. I don't enjoy feeling this way and I know others don't want to see me this way or read this and this makes me even more frustrated.
This is my today. Hopefully tomorrow will be better