I'd like to apologize in advance. I am extraordinarily tired, but I will try my best to write coherently.
Yesterday, Gus and I went to his cousin's wedding, an hour and a half away. It was quite a challenging day for me, and really showed the new symptoms I'm developing. I used my wheelchair and my Aspen collar the whole day to try to help me last as long as possible.
First, I took my pills in the morning, as I always do. Unfortunately, as has been happening lately, I had a lot of trouble getting them down. Already, I have to arch my back, pull my head back, and lower my chin to my chest to get big pills down. (I don't take any huge horse pills.) Even while doing all of these things, I have been having trouble swallowing pills. Sometimes, they come back up, sometimes they kind of go back and forth, and now, sometimes I actually gag and vomit several pills back up. I drink copious amounts of water in between pills. It seems that now, I have to add a little bit of food in between to encourage the pills to go down, in addition to the large amounts of water I drink.
Next, at the wedding ceremony itself, I had one of my new "sleeping" spells. I became extraordinarily tired, and basically fell asleep. The only difference, I could still hear what people were saying. I just didn't have the ability to react. Gus discovered a neat little trick. He guessed that I could hear them talking about me, and asked me to move a finger if he was correct. I didn't know if I could, but he was right. I could move a finger! So, we've developed a new way of dealing with this, which is choosing one finger to mean yes and another to mean no. This way, I can still communicate a little while I'm "sleeping". The only question is, how to deal with these spells. Salt pills don't seem to be the answer anymore. Yesterday, I think the Provigil helped, followed by a lot of water to get the Provigil working sooner.
After the Provigil kicked in, I started trying to wake myself up by squeezing my hands and feet, trying to pump the blood back to my brain. The best thing was when Gus squeezed my legs, which were not circulating much blood, based on how cold they were. He just kept squeezing them, pretty forcefully. I had decreased sensation in my legs. He thought he was hurting me, but I could barely even feel it. After a couple minutes, this really seemed to help send the blood back to my brain. I know that there are support hose for this, but in the heat, I promise that overheating causes just as much stress.
After the ceremony, we were the last ones to leave. We made it out to the car, where I was able to rest in the back seat for a bit. Then, we went with Gus' sisters and nephew to Subway, where I was able to eat and take more meds. I was feeling pretty well at this point, compared to the rest of the day.
So we went to the reception, expecting to be able to stay an hour or two. Unfortunately, there was another problem. The band, which included multiple horns, were all using microphones, amplifying the sound to a completely intolerable level. Of course, I did my very best to be polite and ignore it. Unfortunately, my brain just couldn't take it. I started having a very interesting reaction. The upper half of my body starting convulsing. After I couldn't control it anymore, I begged Gus to get me out of there. We found a couch in the hall, where I let the convulsions go for a couple minutes, without trying to stop them. I've had this reaction a few times before, but never this severe. I certainly never deal well with too much noise or lights or activity. I have the same reaction to being startled, too. I'm not sure the name for it, but I know that it is an autonomic reaction to the brain being overwhelmed. It's not a real seizure, but similar. After I stopped convulsing, I was completed exhausted and hypersensitive. Even the flash of a camera felt like an attack. My whole body felt like it was being attacked. My nerves were on edge. At that point, we gave up on the rest of the night, because we knew the music would last throughout the evening.
We drove home, a little frustrated with my failing body. I was completely exhausted and zoned out for the rest of the night. I slept fine last night, but I'm still exhausted now.
I'm glad we were able to go to most of the day, but as always, I feel guilty for causing problems.
I find that these symptoms are really hard for people to understand. When the symptom is a headache or nausea, everyone can relate, because they've all experienced it at some point. When the symptom is falling partially asleep or going into convulsions, but not having a real seizure, it's a lot harder to explain. The easiest thing is to say that the "sleeping" spells are similar to narcolepsy, and the convulsions are similar to a seizure.
Today, I will be resting until it's time for the piano recital. I will have to find a way to be awake/alert for that time. Then, it's a week off!!! I'm so glad I gave myself this week off. My body is truly exhausted. The real problem is, after a week off, how will I ever convince myself to return to work?
I have gotten started on getting all of the necessary pieces together for Dr. Menezes. I'm still very torn about whether or not I could let another doctor operate on me. But, I'm at least going to get his opinion, if he's willing to see me.
