Not Getting Me Down

Have you ever woken up and felt like it was one of those days you’d love to just stay under the covers and spend the day in bed? For people with Syringomyelia, I think that happens every day. For the past several months I have wanted to stay in bed all day because the headaches and back pain are always present. Some days are better than others and some nights are, too.

The last few days have been what I call my migraine days. I realized that my syrinx causes me to have a headache constantly (have had the same one for 2 straight months) and a migraine around every three days. This week was better because I only had a migraine for 2 of those days. Unfortunately, there’s really not much I can do for these headaches or migraines. I think I’ve tried every remedy for them for the last 15 years and each failed. I’ve had the migraines since I was 13; however, in the last several months they have intensified and become more frequent. The good news is that I have learned to live and function with them. This is a feat that many have a hard time believing. I’ve had people question whether I actually have migraines because I can go through a normal day at work and deal with the nauseous feeling, sensitivity to light and sound and the absolute torture of the stabbing pain where most people couldn’t. It isn’t the best feeling in the world to be called a liar, but I have to move through this because I won’t let the symptoms or naysayers get me down.

Last night I had foot spasms, another of the symptoms for this disorder. That was the first time I couldn’t just push through the pain. There I was in the hallway stopped dead in my tracks writhing in pain. My daughter (5 years old) stopped and stared at me and consoled me as I grasp onto the doorway trying to get a bit of relief. I have tried so hard to shield the kids from this as much as possible but when you’re in pain it’s hard to do effectively. I’m blessed to have such great children and a supportive family who have really stepped up and helped me through this struggle.

I want to share that today my back doesn’t hurt nearly as bad as it did yesterday, my headache is only a dull annoyance and my feet have not yet had a spasm today…all great news. I plan to get out there and celebrate the day with my kids and live my life just as I would have had I not been diagnosed. I do realize that I have some limitations, but I’ll deal with them as they come because the most important thing to remember is that I can’t let this get me down. My kids won’t be little much longer and I plan to enjoy every day I have with them.