Friday, May 4, 2012
It is nearly 7 months now that I have had a constant, 24/7 headache. It seems impossible to be true. But it is, and wishing it weren't so doesn't really help.
So I try not to go there.
Sometimes people say things like, "I don't know how you do it."
Well, that's easy. I have no choice.
I suppose I could curl up in a ball someplace, but lying on the couch watching Jerry Springer really isn't an option. I am not a fan of daytime TV, and lying down usually does not improve my head pain one tiny bit.
And to be honest, even kicking back in my own living room to get through bad days is not an option that makes any sense, because my mother's TV in the back of the house, is a dull roar that drives me fairly insane.
So, no, that's not a plan of action.
Keeping going is the only thing that works for me. Acting 'as if' everything is ok. Sometimes I just move a whole lot slower than usual for me, and I get a whole lot less done. And I squint. Probably making permanent furrows in my brow, which honestly, doesn't bother me one freaking bit at this point.
And I ask L a LOT, 'did I do this already?'
Trouble is, the rest of my body feels pretty good. I have no other big complaints. So trust me when I say that having this headache mess with my life on a continual basis makes me pretty angry at times. Angry and frustrated.
It would be easier, somehow, I think, if I knew WHY I was having this headache.
After months of MRI's, CAT scans, lab work, doctor's appointments, injections, etc, I still have no real answer, or at least nothing that makes any sense.
The probable answer is that I have a 'new daily persistent headache'.....yup, that's a diagnosis. And the reasons for it are many, and the treatment for it is obscure and sketchy. According to everything I read, it is likely to last 3-5 years. That would really suck, to lose the quality of these good years to a headache. Because you know I'm not getting any younger.
Oh, yes, I try to tell myself that it could be worse, that so many other people have much worse medical issues to deal with. And that works, to an extent.
But the pain between and behind my eyes is sometimes so intense, that any reasonable argument is lost, no matter how hard I try to accept it as the truth.
I get up every morning, with HH in tow, I prepare for the day. Sometimes early, like today, I sit on the couch with my cuppa tea, and tears come unbidden. Necessary you might say.
And always, I try to plan my day, create an agenda, purpose, distraction. And luckily, the studio is a busy place with lots of things that need to be done to pay the bills and make it work, so there is no lack of content to fill my hours.
That's how I do it. Somewhat desperately, at times.
Last week, the acupuncture seemed to help. This week, HH rages on unaffected by needles stuck in my body, oblivious to my despair. Bastard.
You can only imagine how I hate HH.
And how intent I am on living my life in spite of him. It's a "he".......how could it be otherwise??? I couldn't blame this on one of my own.
My one wish would be that there would be ONE doctor who would take this mystery on, who would orchestrate what I did next, what test, what procedure, what treatment I tried. Call him a lead investigator......that's what I want.
But of course, that doesn't happen. You go to your GP, he does what he does. It doesn't help. Then you are left to decide what you would like to try next. I have 30 years of nursing experience, which may or may not make any damn difference at all. What do lay people do, I ask you?? With no background at all? I'll tell you.......they are fair game for our medical system. That's what.
I have been asked if I would consider that maybe it is Chiari after all. And my answer to that is this:
One doctor said he thought it was Chiari. Two neurologists and one neurosurgeon said that was bull, and not even to be considered. Then there is the fact that I have had this all my life, why now? And why two months after my head injury?
And then there is the simple fact that if someone said it was Chiari, there is not much chance that I would ever agree to the surgery that fixes it. I have researched it along the way, and it is just too risky and too traumatic. I can function now, and after that surgery, maybe not so much.
Now that I have unloaded my grief and frustration on you, and probably bored you to tears, let me just say this.......I am so grateful that you listen, that you comment, that you support me on this roller coaster ride with HH. It does mean a lot to me, it really does.
Sometimes it feels that I always have someone to talk to about it, even now, at 7am, on a rainy Friday morning.
Thanks, for being out there.
Welcome to my world.