As you can see from my last post, I’ve been in a pretty good frame of mind the last little while. I’m learning to cope with the fact that my life isn’t the same as it used to be, and I’m still able to enjoy the good moments that I have.
I get down on my situation every so often, usually at night when I’m lying in bed and have time to think. I’ve broken down about it a few times since leaving the hospital in January, but these are becoming less frequent.
Usually my negative thoughts are the “it’s not fair” type of thoughts. It’s not fair that I take care of myself and this happened to me. It’s not fair that my lupus affects my brain. It’s not fair that I’m tired all the time. It’s not fair that I have to pop 13 pills every morning and that they’re eventually gonna kill my liver and/or give me cancer.
I get bored of my “it’s not fair” thoughts because they’re so lame. When I’m being rational, I know that my life is still great. I have a supportive husband and good friends and family. But sometimes I just can’t help them. And I guess it’s okay to just have a good cry every so often anyway.
I had my first “setback” in over a month at bedtime last night. I haven’t talked about the brain problems that lupus causes me in this blog much, mostly because I don’t know how to describe them and I don’t know what to call them. But also because my drugs have been controlling the problems and they haven’t been on my mind much.
Probably the best way to describe them are to call them hallucinations, mostly of the auditory version. The sounds around me change and get amplified and distorted. I get extremely anxious and feel trapped and like I can’t control what’s happening around me.
I had my first hallucination since January last night while in bed. I’ve had them several times by now so I knew what was happening, but it was still extremely difficult to not freak out. I tried to deal with it in the dark for a few minutes but that was really scary for me, so I ended up getting out of bed, finding the light (which is a lot harder to do when this is happening than it sounds), and waking up my husband.
The entire episode lasted less than 10 minutes. They never last long. But they’re very scary and now I’m really disappointed that it happened. I don’t understand why it happened when I’m taking so much medication. Did the 5mg of prednisone that I cut out really cause this? And if so, does this mean that my other drugs aren’t controlling my disease?
I could talk a long time about the hallucinations I’ve had in the past and hope to never have again. One time I thought I had to pay my husband to use a towel to shower, and then I couldn’t understand how I was going to be able to afford to shower every day. Another few times I thought I destroyed the world because something impossible happened and WTF HOW DID THAT HAPPEN, OMG WE’RE GOING TO DIE.
Some of the worst ones were when I got consumed by certain thoughts and couldn’t think about anything else but also couldn’t talk about it. I remember one night all I could think about was coconut for 10 min. Messy coconut to be exact, whatever that means. It’s so messed up that even I can’t understand it now. But I remember telling my husband that I’m scared and all I can think about is coconut, but it took me like 5 full minutes to come up with the word coconut. I had a lot of blockages at the time when it came to communicating; sometimes the words couldn’t come to mind and I couldn’t explain what I was feeling.
All the hallucinations stopped when I increased my medication, the prednisone to be exact. My rheumatologist had wanted me to be on a higher dose anyway, so I increased it to 40mg and enjoyed 1.5 months without any episodes at all.
I really hope that last night was a one-off and that I can taper down like planned. It’s been great feeling like myself while on predisone the last month or so, but I’m so scared to stay on it long term and really want to get off it.