Headache Diary Day 53: Friggin' Awful!

Okay, today is a terrible day. Well, in the sense that I slept in again and missed my morning dose for an even longer period. I simply cannot do this anymore. It is clear that I am going to have to become one of those regimented people that never sleeps in. This is very upsetting as I love a good long slumber, but I simply cannot have another day like today. I had to take my second dose about two hours early to even put a dint in this headache today that was caused because I did not get myself up in time to take my morning dose of Indomethacin. Worse than the headache, I let Cate (my darling 6 yr old) down today. I had had right side facial numbness and an odd sensation in my right hand and right foot all day. Even though I was feeling off, the headache was subsiding some and she was to go to a costume party that she has regularly attended the past few years. Kris needed to stay home and type so I was her transport. I had expressed the odd nature of my headache at various points of the day, but apparently had been too cryptic to make my concerns for going out clear to my wife and daughter. Kris got her ready, all costumed up, and I reluctantly attempted to take her to the party. I did not make it a 1/2 mile from the house before I became overwhelmed with everything being too bright and too loud. I got out of the car briefly at our local Post Office to pick up the mail and someone in the next parking lot over chirped their car locking device as they went into the local store. It honestly sounded like they hit it 7 or 8 times, but I know it was all just echo or my senses being off or something. On top of that, I got a good bit dizzy when I transitioned from the tinted windows of my car to the full light of day on my way into the Post Office. Needless to say, or possibly not as I do not know if anyone knows how I feel anymore, I could see no choice but to head immediately home. I am not sure if that was me being rational and knowing that I was in no condition to be out and about or if it was a panic reaction to the sensory free-for-all that I was experiencing. I feel like a total failure regardless. It is so frustrating that even when I think I have this under control with the knowledge that this is diagnostically HC and that I am on Indomethacin to treat it...it still manages to kick me in the teeth. People, myself included prior to 53 days ago, do not understand pain or those that suffer from it. I do not know how to explain it to adults let alone a 6 year old. I know Cate thinks her dad is Superman, as she should, but it is so painful on an emotional level to not be able to soldier on and put up the facade that I am made of steel. I fear that she will remember this day as the day I let her down, showed her my weakness, and I do not know who to speak to about it that would understand. Kristina tries, but I know it is frustrating to her as well as me that she has never experienced anything like this. I have difficulty dealing with the fact that this will likely last forever. By name alone Hemicrania Continua translates to "Hemi" (1/2) "Crania" (head) and "Continua" (continuous or permanent) headache. How do I explain that to people? How do I explain that I can be fine on my medicine for days on end and then have a day where I am useless? I am so stubborn that the thought of that last scenario alone angers me beyond belief. I do not want to miss anymore work than I have too, and I will already miss another day this week due to another follow-up with my neurologist. If I were one to believe in such things, I find myself worrying that I have somehow done something awful at some point and this is the universe getting even with me. I know that is unreasonable, but having a headache that I can only partially mask for a few hours at a time that will go on for the rest of my life also seems beyond reason. Ugh, I have spent too much time writing this diary for today...I am sure there are other things I need to be doing. Though, all I feel like doing is crashing in my chair and finding some Halloween Eve special do try to fall into and forget that my head is still slightly aching and that I let the most important little person on the planet down today. I have no idea if anyone is even reading this blog, but I have to put these things down somewhere. I find that the new me, Permanent Headache Man, is more frequently feeling nearly alone...with few people to talk to that aren't tired of not quite understanding what I am going through. It is clear that it is stressing the fabric of my family, my existence, and my psyche. I cannot allow any of those things to progress. I have to be the Superman that I wasn't for my darling 6 yr old, the hope for all humanity, again from this point forward. Wonder how I do that?