Today was a good day. =) It is 5 pm and I have only had about 8 attacks so far. That is so much progress for me!
I'm up to about 1 good 1/2 day a week. Every time I think I've figured it out (the right formula of medication schedules, alternative medicines and practises, the right food, etc), I'm thrown a curve ball and have 3 bad days.
The only thing I know is that these two things ALWAYS make it worse by several days:
1) Less than 10 hours of sleep
2) Talking too much (or anything requiring moving my face too much)
a) I used to notice right away that the burning, stabbing, punching, pulling, stinging would increase as I spoke, but I always hurt. It just was the intensity that increased. I didn't notice a difference day to day. But, as my meds have been increased to full dose I can tell that simply talking too much one day makes the next 2-3 days horrible. I pay for it more than just in the moment.
Just like after every MS exacerbation, I had to relearn what my body can and can't handle. It takes some time but eventually I find patterns and adjust. Sometimes doing too much physically was worth it even if it meant my fatigue, nausea, dizziness, pain, and strength for the next 3 days or week would be out of control. I could also plan for something and rest much more in anticipation of an event. It didn't always work, but it did seem to help more often than not. With ANESTHESIA DOLOROSA, however, the pain is more than I can bear most times so my body is ruling my decisions these days more than ever before. And the patterns have been much more difficult to nail down.
It took me a long time before I could find any good that came from this anesthesia dolorosa and bad surgery. BUT, I finally figured out one!!! The pains are a great reminder to take my health seriously. I HAVE to say, "No," when normally I would push myself until I crashed. I can't skip even one dose of any of my meds. I get frantic now when I get low on most of my medications. I have 'back ups' in my purse just in case. But, I'm more cognizant of what I eat, how much I sleep, and where I put my energy. I literally don't take one thing for granted that my body does now. Breathing, talking, heart beating (my heart rate continues to be too high because I'm constantly in pain), intestines, feeling, seeing, hearing, talking, voice box, ---everything! So, I guess that's TWO good things from all of this. In time I'm pretty sure I can think of a third.
I say with great CAUTIOUS optimism that I am learning to live with anesthesia dolorosa and trigeminal neuralgia. Ever since I returned from my brother's wedding I have regressed considerably. This was especially frustrating and depressing because I worried that already my body was adjusting to the anti seizure meds just like all the times before. I cried that I didn't know if I was strong enough or if I could handle the greater increase in pain again so soon.
THEN I REALIZED...improvement I hadn't noticed before!! When I cried, as long as it was during the day and my many meds were on schedule, it DIDN'T FEEL LIKE ACID RUNNING DOWN my face. WHAT???? At the moment the pains were so bad that I felt like there were no improvements and only digression. But, I was THRILLED.
Here are the other improvements that have happened:
Week 11:
- (Only during the day and if meds are on schedule)--crying feels like crying. No more acid. I can wipe away the tears if I catch them before they hit my cheek.
- Lips burn less (still always burn, but the level has decreased during the day)
- The tips of two teeth I can feel now on my right side (one top, one bottom)
- The sensation of bugs crawling under my skin is now happening on my worst spot (by my mouth/chin-close to the incision spot). When I touch it or accidentally brush it, it feels like there is a hair there that won't go away. But, I'm thinking that means healing is happening. Granted, I have spots on my body that it feels like that no matter what and have never gone away without anti-seizure meds, but it's just what I'm gonna believe. =)
- My depression is lifting some.
- It is less obvious that I twitch and wince now. I cry out or moan a lot less-usually just at night when it's unbearable. If you see me out, you can't really tell the pain in my face. I have learned to also hold back so that you can't tell the increase in pain as I talk. Just like when I was in my first year of college and learned how to look normal when my vision and hearing would go away! Or when I was about to throw up, couldn't walk well, got too dizzy, or anything, I learned to adapt and look like I was okay.
I can't believe my luck! Night time is still very difficult for me. But, I felt so much like a normal person today for about 2 hours!
I just recently started seeing a chiropractor and have been seeing a massage therapist. I think these things have helped me greatly. I used to feel SO incredibly GUILTY for going! I'm so used to not spending money on me-not for Walmart moisturizer, not for clothes, not even doctor's recommendations. But now we have enough to meet my needs and I cannot even believe it. Sure, it doesn't solve all my issues. But I have a reduction to some extent to some of my pain. This is the biggest blessing I've had in 3 years. I still feel somewhat guilty, but I feel more alive and human. So, even if it is just for half a day, once a week, it is SUCH a tremendous blessing in my life!!!
Thank you to those of you who MADE it possible!!!
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