When a migraine really takes hold of me, it’s time for a day with no light and no sound.
Take my medication and try to sleep. Oh but the pain, sleep just will not come. A tiny bit of light maybe? Oh no, not yet.
I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence. I don’t have to worry about sounds sending me into an abyss of pain. My room is cloaked in darkness. I do have to have nightlights, they all point to the floor, showing as little light as possible. If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light. There are TWO main reasons:
First, I cannot walk in the dark. Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down. Walking in the dark, is simply not something I can do. I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s. I remember being told I was just thought to be a little off. I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.
Second, I cannot hear in the dark. Let me explain. The only way I can hear…really hear anything, is with may cochlear implants. If I don’t have them on, I can’t hear. I have to see to hear. I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know. That’s the only way I can communicate. Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.
After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief. No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off! The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7. Remarkably, this amount of pain I can deal with fairly well. Don’t get me wrong, I’m not bragging that I can take the pain…Oh no! This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level. I don’t complain until it hits a 5, and only then because I know it will be getting worse. At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches. I never want to have rebound headaches! Before I knew about rebound headaches I took too much medication. I hurt, I took something, that’s the way it works right? But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication. It’s strange. I know I’m not giving sound medical rationale about this, but that’s the way I think of it.
I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F. The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it). Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more. I’ve had so many migraines and vertigo taking the stairs is just too risky.)
I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.
Why is the Botox not working? I have no idea. It normally takes a week for it to kick in, but it’s been over a week. I hope this doesn’t mean that this treatment has stopped working for me. I’m not sure what we’d do next.
Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living. Understand?
If you have times like this, what do you do? How do you start to feel useful again? I feel it’s been so long since I’ve really been useful. So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want. Living like this is torture. I want to be able to cook and clean. Work in my studio. Have a Garden. But, it’s just too much on this body and mind of mine. I say figure out something small, but I’m out of suggestions. If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless. Thank you all for giving me that gift.
I apologize that the pain is talking so much today. May tomorrow be a more pain-free and steady day.