Living With Common Variable Immune Deficiency and It's Autoimmune Friends
My body’s progress toward healing and infusion recovery is slow but steady. It’s complicated by the fact that I’m still not sleeping well at night. Don’t know whether it’s the heat or just that I’m unsettled. At any rate, one of my solutions when I don’t feel well is to look for beauty. We had to go out for groceries this afternoon, and I saw these flowers along the way. Capturing them on film definitely lifted my spirits.
I’m still doing not much other than sleeping, which is exactly what my body needs. I can’t always sleep when I most need to because my sleep cycle is one more part of my body that doesn’t always function quite the way it should. So I am extremely grateful that Wednesday/Thursday’s infusions have balanced that out a little and has enabled me to get some much needed rest. Such is the miracle of adequate gamma globulin levels that the bottom of my left foot is already completely healed, and my right foot is doing it’s best to heal as well. This right foot is a little trickier because every time I walk on it the split opens up again, so it’s going to take a little longer. But with the infusion of gamma globulin, I know it will indeed heal with time.
The weather is a little cooler today, which is a welcome relief. The sinking sun this time of day is shining through leaves and flowers, transforming their ordinary beauty into incandescent light. All will be well.
Well, the medication to help me sleep has finally completely washed out of my system. I thought it had all disappeared a few weeks ago, but obviously it hadn’t. How do I know? Because then I was able to sleep some nights, and now I can’t. I doze in fits and starts, and probably only sleep solidly for a few hours. And without deep sleep, my blood pressure goes up, as does my anxiety and my Obsessive Compulsive Disorder.
In the 80’s, we were at the height of the drug awareness campaigns in the schools. The counselor at my school had this poster on her door: This is your brain (cue picture of a profile of a head with a brain inside with the little squiggles representing the folds in the gray matter), then below it, This is your brain on drugs (cue a picture of a fried egg in a skillet. Totally fried.).
Well, I don’t have a picture, but this is what my brain looks like as a result of very little sleep over a couple of weeks:
💭 There is not a thought inside the thought bubble because I can’t fit them all in that tiny space. Even though they are short. And random: I should think of a post to write. Gotta write a post. No, wait, I need to sleep. Can’t. Oh well, should tidy up at least the front room. Won’t take long. Will feel better if I do. No, gotta sleep. Can’t. Post. Post. Has to be perfect or no one will like it. Walk dog. Read. Can’t concentrate. Walking will make both the dog and I feel better. No. No energy. Walking will give me energy. Poor dog. Write post. Can’t think of anything. Just sit down and type. Just want to relax. Nap. Rats, doesn’t work. Sleep??? Please? What if I can’t think of anything to say? What if I’m just boring and no one wants to read. Gotta be funny. Can’t be funny today. Can’t think. What if I never have any ideas again. Sleep?? Pleeeaaasse? Dagnabbit.
My brain is really more chaotic than that, and I wish I could make it funnier. But in saner moments I realize that half of what makes this writing business work, perhaps more than half, is just showing up. Just writing every day, and slowly, hopefully, getting better at this.
When I started this blog, I thought that every post should have some deep meaningful content. That didn’t work out so well in terms of frequent posting; I would just get frozen for weeks or months at a time, especially since even thinking was more than I could usually manage. And then I’d take days just to write and rewrite one post.
When I came back to the blog this time, I told myself that I would just write whatever was on my mind that day, and get in the habit of posting almost every day. And then go from there. And hopefully both the blog and I would grow. I hope that I am, at least occasionally, writing things that are relevant to you guys as well. I’m trying to give a snapshot of what living with CVID (and various other complicating conditions) is like, so that you others out there do not feel so alone. And if I write about trying to live as normal a life as I can, then that helps me continue to try to do just that.
Do any of you have topics that you would like me to write about? Or thoughts of your own to share? I’d love to hear your suggestions and requests. Please don’t be shy. Leave a comment or send me an email.
And it’s an 8 hour infusion day. Please send your good thoughts. 😘
Zebra's Child 