medical and mental health update

Dare I say that I feel good? I certainly don't want to jinx myself, but it has been such a relief to be mostly pain-free the last three weeks. The heavy body feeling has worn off and now I can even take 1/4 of a tegretol during the day if I have breakthrough pain without falling over in slumber. I'm sleeping great during the night. I mean, I just go lay down and I am out. I'm still waking up at 5 am, maybe not as wide-awake as I once was at 5 am, but it doesn't take me long to shake off the sleepiness. 

I have my early morning routine that I like to keep, but afterwards you can generally find me dancing in my kitchen around 7 am. I will tell you that if I appreciate one thing from covid (aside from feeling absolutely fearless) I also enjoy the ability to go to sleep without my mind thinking about a million things at once. I guess there is a bit of bliss in having an empty brain. I am completely off wellbutrin and I have been dreaming again, and even remembering them. They aren't as vivid as they used to be, and I'm dreaming of people and things from a loooooooong time ago, but man, dreaming again makes me feel more like my old self. I always loved sleeping and dreaming. Not being able to dream felt like just one more thing that was taken from me. 

I don't know if I mentioned this, but the psychiatrist was the one who suggested I break up the tegretol into pieces if it was too strong. Apparently it is also a mood stabilizer for people with bipolar disorder. I am prone to hormonal mood swings, but this month, nada. I think Peppy was even a little surprised when my period hit because I wasn't irrational. And because I'm taking tegretol for the constant nerve pain in my face, it also helped the nerve pain I feel during PMS. During PMS it was often like every single nerve in my spine was radiating, but this month that was gone. Peppy asked on day two (generally my worst PMS day,) "You don't feel bad?" And I had to think about it a minute and I could honestly tell him no, I didn't. I think maybe I'm just so overwhelmingly thrilled to not feel the constant pain I have felt for over a year.

I always felt the trigeminal nerve radiating in the background, but when an attack hit, I really and truly wanted to die thinking about feeling like this for the rest of my life. Our extended family is well-intentioned, but it is so very hard explaining an invisible ailment, especially something that you have never heard of before. People were wanting me to commit to plans months from now, and that's a hard thing to do when you never know when your face is going to have a bad flare up, because when that happens I legitimately had to cancel everything. When it flares up it is almost like I have a stroke, because I slur my words, I'm clumsy, I can't spell or think. So I basically stopped committing to anything that was over a few days away, and I know some people in the family thought I was exaggerating or even making it up. I hope they never have to deal with anything like this. I wouldn't wish it on anyone. Not even Donald Trump or any of the Joe Bidens.

I feel like I have gotten a part of my life back. I have literally cried so many happy tears the last few weeks. I had forgotten what it felt like to not constantly be in pain. I usually go through a box of 5 icy hot patches a week, and I still have the same box (with a patch and half left) that I bought three weeks ago. 

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Imagine a year of feeling every single one of those nerves constantly lighting up and migrating all over your face. When it goes behind your eyes you get nausea and your eye begins to spasm. When it goes near your ear your jaw tightens up. When it goes up your forehead you get migraines and nausea. You never know when or what is going to cause it to flare up. Your teeth feel like you have cavities all the time and you constantly feel like your nerves are being electrocuted or that you are being repeatedly stabbed. Imagine trying to think, or even stand upright, during the middle of one of these attacks. Imagine knowing this is progressive and that this is your future until you die. Super exciting, right? 

What about the focalin? Well, I'm glad you asked. I ended up taking more of it this month than I had planned, because when I first started taking the tegretol I basically took the focalin to offset the sleepiness so that I wouldn't be passed out on the couch all day long. Due to that, I didn't feel any extra energy from the stimulant. If anything, it just brought me back to my baseline. But! I did notice that for the first time in my entire life I have been able to pay attention to the entire sermon at church. Generally I go in with good intentions, but my attention span prior to covid was that of a fruit fly. After covid? It was nonexistent. I sat in awe that first night that I could pay attention to the entire sermon. It was surreal and insane to me. I couldn't believe it. 

Clearly I have no trouble going to sleep at night. The focalin hasn't done anything to my appetite and I'm sure if I asked Peppy each day he would have no idea if I had taken a pill or not because I'm not climbing the walls or talking 100 mph. I go back to the doctor on Wednesday and the two things I've noticed that I can tell her were the ability to hyperfocus when someone is talking instead of tuning them out after 30 seconds, and also how it doesn't seem like wading through sand just getting up and doing something.

Unfortunately the extra dopamine has not inspired me to be creative again. I truly believe this is one of the areas in my brain that covid dimmed and will just never return, and that absolutely blows. But after a lifetime of zoning out and being unable to just get off the couch and go, it is amazing to be able to do these things. I am not a lazy sloth, and I have nothing to feel guilty about, I am just working with a brain that fights against me. I recently heard ADD being compared to erectile dysfunction of the brain. Having no penis I cannot confirm or deny this. I can say that people with ED want to have sex and can't, and there are often things that I want to do and my brain says that I cannot. So I guess I can see the parallel there. 

This is the most like the old me I have felt since I can remember. I'm going to appreciate it and enjoy it and not take these pain-free days for granted. My hair has started falling out in large quantities again. But you take the good, you take the bad, you take them both and there you have....the facts of life.