sitting with it all

I tried to paint a picture,
Of how I really feel.
But I could not find the colors,
To make it all seem real.
-Bear Peterson

T says we should talk about it. I don’t know what to talk about. I feel tired. I told him I need to sit with it for awhile, bring it closer and have the ability to push it away if I need to. Internalize it and think about how I really feel. He says that’s a good idea but to always remember that whatever I feel, it’s okay.

He wanted to know if I’d read much about lupus. I said a little bit, but I also told him that if you read too much it can be a little too overwhelming. He told me he read up on it a little bit as well because he didn’t know too much about it, but wanted to know more.

Then he asked how many people I’ve told about it. ‘Not too many’ was my reply. He asked me if I told my mother. I did. He wanted to know her response. ‘Am I allowed to tell anyone?’ was her first question. ‘No’ was all I said. I don’t know why she would have a need to tell everyone. She didn’t ask how I was feeling about it or anything that had to do with me, just whether or not she could go and tell the world. I told her I might book off work and go for a drive. She told me to make sure I didn’t drive off a cliff. I just wanted a little bit of support from my mother. Not sarcastic comments about going off and killing myself. T told me he wishes I had someone growing up, who I would have been able to talk to. He said it would make things feel so much different.

Besides the mental part of it all, I’ve found some of the things that have been happening the last couple of weeks to be incredibly frustrating. Yesterday I woke up and it hurt to walk to the shower. Things kept slipping out of my hands because I couldn’t grip onto anything and I dropped a jar of jam as I was taking it out of the fridge. Today the weather has changed and my elbows and hands are really sore and it hurts to walk. I’m supposed to go to a BBQ but I think I might have to back out. I’d rather have a bubble bath, put on warm pjs and watch a movie.

I’m finding the medication side effects along with the discomfort make it hard to enjoy things. If I don’t take my meds at just the right time, I end up with horrible pains in my stomach. It gives me headaches and my skin itches. I’m hoping the side effects get better over time because I’d really like to be able to stop taking ibuprofen as it’s absolutely awful on your stomach. The problem is, I most likely won’t even know if it’s working until about 3-6 months after starting it (that’s what the pharmacist told me anyways). So for now I’m still taking tons of ibuprofen, this new med (Plaquenil) and Tylenol when needed. Ugggghhh….I hate taking pills!!

So, how do I feel about it? I can definitely say it’s not just one thing. And it’s never just one thing at a time. I have a hard time pinpointing what I feel. I think I need to push it away for a short time and just sit with it a little bit longer.