Over the past three years, I have gotten used to adjusting my life in order to accommodate my head problem. My condition, which my doctor has named “chronic postmeningitis headache,” has a unique personality and changes in character and intensity from day to day, hour to hour and yes, sometimes minute to minute. That means I never know what the day will bring, but always hope for the best. This of course includes the ongoing attitude of “dust yourself off and try again, try again,” but there are times, and especially lately that it’s getting increasingly difficult to “try again.” But, what are the other options? Do nothing?
One of my favorite blogs on the old chronic headache issue is called The Daily Headache written by a woman named Kerrie Smyres. Today, she made a post that hit the spot with me in a significant way. The post entitled, “Trying Again After Migraine Cancels Plans” reads like the story of my life. If I had to count how many times I’ve had to cancel due to my head pain I would be busy for a couple of days. I call it head pain because it’s not a typical headache but I’ve been told that based on my description of it, something I call a “cotton ball” head, that it has migraine-like features. It is a really strange type of sensation that it very difficult to describe and I think calling it a headache does not do it justice. I won’t go into gory details, but when it transforms into its worst, I can’t function. Sure, I can walk and talk and maybe even smile and look as though I am “normal.” But, inside that’s another story.
I can relate to this post about canceling because not only have I had to cancel such things as classes that I’ve signed up like a Danish language class and photography class. I’ve also had to cancel coffee dates, lunches, brunches, dinners, Christmas parties, Birthday parties, etc. I even had to get up and leave in the middle of a Birthday party because I simply could not tolerate it. I can’t even say how many times I’ve had the full intention of going somewhere and after getting ready to the point of even having my coat on that I stop and have a heart to heart with myself and acknowledge that I am in no shape to go anywhere.
The sad thing is that as a result of all this canceling, it makes it difficult to build and keep close relationships going with friends and family. People don’t really want to be around someone that is in constant pain and can’t enjoy themselves fully as a result. So, what is the answer? To hibernate? As Kerrie puts it, “Hibernating is way too easy — I know because I’ve been doing it the last few months. I miss being in the world. I probably won’t make all the classes I sign up for, but at least I’ll try. How else can I be sure to enjoy the good parts of life?”
She also goes on to ask others to share their losses as a result of having a chronic headache problem and send them to her as a way to deal with loss and grief. I could consider this, but if I did it, I’d definitely need a box of Kleenex next to me. One last thing she mentioned that I couldn’t have said better is, “Headaches steal so much of your life. The list is long, but includes jobs, relationships, having children, self-respect, ambition and identity.” I am sorry to say that this is the sad truth.
I guess we all deal with things differently and the longer time goes on, you should get better at coping and managing your life with a condition such as this. I feel like I am getting better at it, but I can’t help but feel that as time goes by, it gets harder instead of easier. But the key is is to keep on keeping on. And to keep trying. Stops and starts, that’s just how it is for me right now. I don’t know if it will be this way forever, but it’s something I must learn to get used to otherwise the disappointments become too overwhelming.
I have signed up for a new class though, it’s a “Course in Danish Culture” at the University of Copenhagen. I’ll try to attend as many of the two hour lectures held once a week as I can but if I can’t, it’s OK, as long as I keep trying.
Thanks Kerrie for your post. It put into words what I’ve been feeling for a long time.