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Surprise Improvement

I’ve been told that some of you are questioning how I could be pantomiming the last couple posts or think clearly enough to come up with them.

First of all, I’ve been thinking about things I wanted to say to this community and to the world for years and years. I planned to get better (hah!) and start a blog or Facebook page or something similar. I’ve had ideas written loosely in my mind for a long time (many more than I’ve managed to post to my page so far). And ever since I decided to start this page I have spent the majority of my moments of clarity putting my thoughts to words, then rehearsing those words everyday over and over again so I remember them on Ativan day. Then I spend literally hours pantomiming to a very kind neighbor named Adriana who I discovered has an uncanny ability to decipher my gestures and I’m able to communicate much faster. She used to be a teacher and she thought that might be why. She would stay up until 1 or 2 in the morning with me. Then she would type everything up and send the posts to my sister Ashley with notes about when to post them.

However, I’ve recently experienced what I am very hesitant to call an improvement. I have been stuck in the same pattern and routine, slowly getting worse for so long it felt dangerous to tell anyone about it. I’m sure you have all experienced minor improvements and you don’t know for sure what caused it or even the full nature of it at first and you cautiously start taking advantage of it and doing more and then it goes away and you go back to how you were before or worse. The worst period of this whole illness for me happened right after an upswing that I took advantage of and did too much. Actually, being filmed in the movie "Unrest" was the final straw. I could feel that I needed some calm days because I had just had to communicate a lot of changes to my routine due to changes to my stomach (gastroparesis). But the film crew was only in the area then and I felt it was important to let myself be filmed because no one sees severely ill ME/CFS patients and we exist. This turned out to be too much and I really crashed afterwards, just headed off a cliff into a state of incapacity that is for another post to describe.

I also haven’t really been able to wrap my head around the nature of the improvement. Because most things have stayed the same. It’s as if a tiny part of my brain improved a little and everything else stayed the same. When I’m first injected with a huge syringe full of liquid food mixed with meds and then my J-tube is hooked up to the pump connected to a big bag of liquid food and supplements it’s very uncomfortable/painful. Later in the day, while my liquid food continues to pump, it becomes less painful and is only uncomfortable. I think after some time my GI tract starts moving reluctantly and it gets less sensitive.

At this point I am able to release what I can only describe as adrenaline, which helps all of my symptoms. I become less sensitive to my surroundings and am able to do more. All my improvements in the past have been the same - the ability to release adrenaline which helps everything and all those improvements have been fleeting. (I know, you’re going to say I should do less- that would be my advice too but easier said than done.) I discovered I could use my phone a little and cautiously started writing. I’ve built this up and can write more now. It’s been really amazing. I’ve written messages to loved ones that I had (during previous upswings) scribbled abbreviated versions of on note cards and attached to my WILL which I keep right next to my bed. Not out of negativity but because it comforts me to know I’m ready for the worst. But I’ve gotten to write these messages myself and reconnect with a number of people from my past before moderate-severe ME/CFS or before ME/CFS entirely (mostly ex-girlfriends whom I still love). I got to reconnect with Stephanie Land who wrote an essay about me/us that I posted here and you may have read.

This adrenaline is temporary though. It wears off and I return to the way I was before. In the morning I’m the same as before. So I think it’s dependent on food and meds, one of which is klonapin but that’s not the cause I’ve been on that for 3 or 4 years now. It’s some other unknown.

I’ve actually been able to write the last few posts here myself. I’ve obviously also consulted with both Ron and Janet to get all the facts straight for a couple posts (while on Ativan) and had my sister Ashley forward them my final draft to fact check as I really didn’t want to disseminate false information. If you’re wondering how a severe ME/CFS patient could get all that information correct, I couldn’t.

I didn’t tell anyone about the improvement, I felt like (and still do actually) it would go away if I told anyone. It’s really hard for me to feel connected to people and in the past I’ve wound up unable to do things after becoming connected to people. My mother knew some things had changed but didn’t know I had been able to write until just recently. Only my sister Ashley knew and the people I wrote to of course (and I told them not to tell anyone).

I decided I needed to make it public because my life is so public and I don’t want to be seen as deceiving anyone. But it’s really hard for me to tolerate others knowing about this.

The improvement is probably fleeting, and right now it’s caused some changes to my routine that make it unsustainable. We’ll see what happens. I’m so glad I got to reach out to the most important people to me and basically just tell them how much I love them. It’s been a long time. One girl only heard from me about 7 years ago and all I could manage to do was tear a heart shape out of a piece of paper, take a picture of it and email it to her. One ex-girlfriend has gotten married to an old college friend of mine who is a great guy which makes me really happy for her and they just had a baby. Again I’m super happy for them but also can’t help but think about how much of my life I’ve lost and how close that was to being me marrying her and now having a child. But while she lived an entire life I’ve spent all that time in bed half alive fighting to hold onto the other half.

It’s also felt amazing and kind of overwhelming to be more connected with the world. And to write my own thoughts down to share. Which still exhausts me and I’m still pushing myself to do it. But I can’t help myself.

There are two possible culprits for whatever this is because I changed two things at the same time right before I first noticed changes. The first is increasing Cortef from 10mg to 15mg per day. It is connected to adrenaline so some might argue that it’s responsible but I’ve increased from 10-15 twice in the past and actually preferred 10. The second possibility is Abilify, which I’d already been taking for quite some time, slowly increasing the dose but I upped it to the final highest recommended therapeutic dose for ME/CFS - 2.0mg at this same time. This is a rather experimental treatment but deemed harmless by my doctors so I tried it. At much higher doses it’s an "anti-psychotic" (I don’t really like that term) drug but at this super low dose it decreases inflammation in the brain among other things - there’s something to do with raising dopamine levels incrementally as well which I haven’t inquired about much. I would not recommended experimentIng with it unsupervised because of this post.

There are other possibilities of course- the Buddhas, maybe the Medicine Buddha, the Great Spirit, Jesus, Allah, the old bearded white guy in the sky and of course the never explainable illness called ME/CFS.

No matter what happens I will always keep fighting for you in whatever way I can. Most of my energy goes to trying to leverage my situation into something that could help raise awareness and funding. I’ve always wanted to fight for a cause I believed in. In my dreams I used my camera but in a way I’m getting to live part of that dream in the midst of this nightmare.

[I took the photograph attached to this post, showing my J-tube feeding tube going into my stomach]




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