Random Thoughts With No Sleep

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.  😘

Something to Capture Your Heart

First, let me make it clear that I am not a professional musician.  While I do have some training, I have neither the six-year BFA and MFA required, nor the patience with vacillating paychecks.  But each one of us needs something that captures our heart and nourishes us, and for me that is singing. Five years ago, I decided to join the volunteer summer choir at our church.  I hadn’t trained or sung seriously in the twenty-one years since I had been pregnant with our younger daughter.  I figured that summer choir was a good way to sort of get my hand back in.

So I showed up and sang almost every Sunday that summer of 2005.  In August, Olga, our pastoral care priest, suggested that I audition for the regular choirs.  I resisted.  I gave her all the reasons why I couldn’t.  I had fibromyalgia and was stretching it just to work full time.  I couldn’t possibly commit to singing every Sunday.  I hadn’t sung seriously in twenty-one years and was very, very out of practice.  I didn’t have time.  I didn’t have the stamina.  And for goodness sake, if you knew ahead of time you were going to be absent, you had to fill out an absence form.  What if I got sick? And I probably gave her several more excuses that I can no longer remember.  Olga is very tenacious. She let it drop for a few weeks, and then brought it up again.  Both times, she said,  “Hannah, I’ve watched you every Sunday.  You are so happy when you sing.  You need to audition.  At least go talk to the choir director, because I think some of your preconceptions are not necessarily true.”  So I reluctantly agreed to go talk to James.  After all, I wasn’t committing to actually auditioning.

I went home and that evening, mentioned at the dinner table that Olga really was bugging me to audition. Our younger daughter was home, and both she and my husband immediately said that they thought that Olga was right, and I should.  They wouldn’t listen to my excuses either.  For them I even added the very real concern that I hadn’t auditioned for anything in over twenty years and I was a lousy vocal sight-reader. And the level of musicianship required?  I mean, these choirs sing Mozart masses on Christmas Eve. I figured I couldn’t possibly pass the audition for any choir that sang full works with a Köchel number.  Oh, and on top of everything else, vocal auditions terrify me.  Acting auditions?  No sweat.  Not only am I a natural ham, but I have had only minimal training in theater, and thus hardly any of my ego is involved.  And I would never dream of auditioning for an acting position at a semi professional level.  But vocal auditions? I have been known to be so nervous that all I could produce was a tiny, mousy, unfocused tone.  I also don’t have a lot of confidence in my voice.  I measure myself against professional classical singers.  Ridiculous, I know, since I have had probably less than 1% of the training they have had.  But there’s my perfectionism again.  And I care desperately about singing.

I called our older daughter in New York.  First, let me say that even though she had only met Olga after she had graduated from college and was living and working in New York, she has a deep and abiding respect for Olga’s perception of things.  To this day, if she is trying to get me to do something that she knows would be good for me, and I am resisting, she will frequently say in a no-nonsense tone, “I think you should go talk to Olga about this.”  Secondly, my husband and our two children are my biggest cheerleaders, frequently having far more confidence in my abilities than I do myself.  Our older daughter said something to the effect of, “Olga is telling you to audition because you are so obviously happy when you sing?  Go for it. You’ll be fine.”

Well, you can see that my excuses had about as much affect on my family as they did on our pastoral care priest.  And my husband absolutely agreed that I was happier when I sang.  I’d sung in the early years of our marriage, and now he was watching me sing again. He said I was not just happier while I was singing, but just happier period.  I asked him if he would mind the time commitment involved. He said that he figured it was a good trade.  While it was true that he would see me less, I was happier when I was singing, and he thought that would be good all ’round.

So one Sunday after the summer choir had sung for the 11:00 service, I talked with our choir director. It turns out that Olga was right (Sigh. She usually is.) and I had several misconceptions about how the two adult choirs worked.  First, and perhaps most importantly for me, I wouldn’t be committed to sing every Sunday.  On weeks you were scheduled to perform, the total time commitment was approximately 7 hours. Other weeks only required 11/2 – 2 hours. Dress rehearsals before major performances were an additional 3 hours, usually on a Saturday.  And if you were sick, you could phone in your absence to the choir hot line.

That all actually sounded manageable to me.  At least manageable enough to try.  I truly am scared of vocal auditions, however, and I am not naturally a courageous person.  But singing is something that reaches deep inside of me and helps me feel whole and complete. It is hard work, but for me it is also healing. I had to take a deep breath to steady my nerves before I asked James, “How do I put myself on the ‘I would like to audition please’ list?”

Zebra’s Child

I am a zebra.  Not a horse, although for years my doctors thought I was.  Nope.  I’m a zebra. You know what doctors are told in med school;  “When you hear hoof beats, think horses, not zebras.”  In other words, if something is wrong, don’t think of all the unusual things it might be. It almost always is the obvious one.  Well, let me tell you, a zebra’s whuffle is not at all like a horse’s neigh. But a lot of times doctors think it is.  For those of us with rare forms of immune deficiency, our doctors slowly learn that with us, they do need to think “zebras.”

Disclosure: I am a perfectionist.  I am also, not surprisingly, moderately OCD and have an anxiety disorder.  That means I try to control lots of aspects of my life and environment in order to lower my anxiety.  Oh, and the little matter of my immune deficiency?  That means that there is a huge aspect of my life over which I have very little control.  Which drives me crazy.  And which is why I sometimes feel not only like a zebra, but a zebra’s child as well; there are times when, just like a child, I have so little control over what happens to me.

Further disclosure:  My biggest coping strategy is denial. I’m not kidding.  Not watching movies, or reading books or eating chocolate, although those do all have their place in my bag of tricks. But I truly think that if I just ignore a problem, and keep living my life the way I’ve been living it, the problem will go away.  Thinking that way is not a little problem, it’s a big problem if you have a Primary Immune Deficiency. Living the way I used to live, with all the activities, working too long and too hard, not enough sleep, etc. only makes me more and more seriously ill.  And, unfortunately, my health won’t improve unless I think about it and deal with it, which is the last thing I want to do.  Dealing with it is admitting that there is a problem.

So.  I have Common Variable Immune Deficiency (CVID), which affects only 1 in 25,000 – 50,000 people, and is life threatening. The gamma globulin treatments that keep me alive involve my getting hooked up to an IV for a day and a half once every three weeks. (I don’t have to spend the night, I just go back the next day.)  Now, ask me how I can regularly get those treatments and still be in denial? A day and a half every three weeks?????  Well…… ummmm….. That’s a really good question.  All I can say is that you have no idea how truly great my powers of denial are.  I could probably enter a competition titled something like  “How far has denial carried you in your life?” and have a good chance of winning.  Or at least making it to the finals.

Unfortunately, as those of you with an immune deficiency know, denial can only carry you so far before you crash and burn. In my case, somewhat spectacularly.