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Update On My Health 2022

2019

In 2019 I was bedridden, couldn’t speak, was dependent on a feeding tube and PICC line for food and fluids, couldn’t tolerate any human presence in my room without earmuffs and a towel over my eyes, couldn’t use a computer or phone, couldn’t write by hand, couldn’t communicate in any way because the human connection it created made me crash. I had to use wadded up paper towels placed on certain things to try to draw attention to them and hope my caregivers would guess while I held still with earmuffs on and a towel over my eyes, which often took hours and made me so, so sick. I couldn’t move for most of the day, having to lie perfectly still without moving a muscle or I would crash. I was sensitive to sounds outside, especially talking even from the neighbors. I could go on but I think many of you know my history well enough already and get the idea.

2020

I started Abilify in 2020 and after 3 months I was able to listen to music for the first time in 7 years. This was the first sign of improvement. Soon I could use my phone to write down a lot of the things I had been thinking about over the years. I wrote long emails to Tracie White about my life and ideas I had about ME/CFS and what it was like to be so severe. She was able to use some of this in her book "The Puzzle Solver/Waiting For Superman", but not all of it, I have used some in later Facebook posts myself. Soon I could use a computer again, and communicate even more freely, sending texts to my sister and then family and caregivers. I discovered I could use my phone to photograph and have been photographing ever since. And for the last 6 months or so, I’ve been able to let people into my room and gesture with them without Ativan if it is about something important so that it generates adrenaline in me to protect me. I can’t just have someone come in to say hi for example. There has to be a necessity there. (see my post "Necessity and Energy" for a longer description of this pattern: www.whitneydafoe.com/mecfs/?post=necessity-and-energy). I can have my caregiver come in once a day to bring me all my daily necessities like refill my food bag and hookup a new saline bag, etc without a towel or earmuffs and I can listen to her talk and respond with gestures with no Ativan. Again, only because it’s a necessary trip into my room.

The first year after starting Abilify I had mental energy to work on things in bed all day without really needing to rest mentally. I soon had so much extra mental energy I came up with things to make just to have fun making things. I made my sister 2 websites for her future events/design business that she can’t even use right now because she just had 2 babies and COVID was preventing any kind of events. But I did it for the fun of making them. I started all kinds of projects, started photographing again, created an Instagram page, I redid my photography website with an ME/CFS blog which took hours and hours of work. And many more projects. I even started working on the foundations of a business making headphones by hand. You can read more about my headphone work and business on my website here: www.rhythmdevilsaudio.com

2022

I have accepted the fact that starting last summer in 2021 I started getting worse again. It has been slow, but I am now much worse than I was last summer. I have slowly lost more and more of this mental energy. I currently can only work on one thing per day on a good day. Like writing this, and this wears me out and I have to just lay down and listen to music the rest of the day. I’m specifically writing this first thing in the morning so I don’t get worn out before i can do it. And I can feel myself wearing thinner as I write this. The bright light I woke up with is fading. It’s really sad and challenging for me to get better and start all these projects and then get worse and not be able to see them through. I feel frustrated most of the time these days, wanting so badly to be able to work on things even if I’m stuck here in bed. Sometimes I want to scream at the heavens: "is it not enough to keep me bedridden??!! Can I not find some kind of life here in bed??!!!" But this is ME/CFS.

Already after writing this much, I feel the need to lie back down and rest. Which makes me want to cry.

But what I haven’t lost is the lowering of my sensitivity, which is still such a blessing. I can still have my caregiver come in without earmuffs or a towel over my eyes and I don’t have to hold still. If I’m not feeling too bad and my parents need to tell me something, they can sometimes come in too. If I’m not feeling too bad, my sister and her kids can come in for like 15 minutes and visit without Ativan. I’m usually asleep when they’re here though as my sleep schedule is rotating and has nothing to do with the sun or the moon.

So my brain/mind is much, much worse than it was a year ago, and cannot sustain working on things or sometimes cannot at all. Which is devastating for me. But my sensitivity has remained lower which makes my life easier and makes things easier on my caregivers as well.

I don’t know if Abilify has worn off, or what to do about it. I don’t have the energy to read what others are doing in the Abilify Facebook group. I just hope something else will come along soon and allow me to continue working on projects from bed at least. I was actually pretty happy in a way in 2020 during that year of mental activity despite having such a severely restricted life still. I mean I missed the world and other people and my life, but I got excited about working on things and felt a kind of satisfaction about my life from working on them.

The Last Month

I got an infection in my bloodstream from bacteria getting into my PICC line about a month ago and it made me worse and I still haven’t recovered from it despite clearing the infection. I now mostly can’t do anything, and spend the day watching simple TV shows or just listening to calm music on my side. I bought a special pillow that has a hole in the middle of it so I can lie on my side listening to music with iems in my ears (iems are like earbuds but better sound quality). I either don’t sleep, or I sleep for 24 hours. And my mind is in such terrible shape. I have about 12 projects I’m really excited to work on and I cant work on any of them. It’s so sad for me because I’m so inspired to work on these projects. ME/CFS advocacy projects, art projects, and the business that I spent the last 2 years building up making headphones (www.rhythmdevilsaudio.com) and is just now getting attention from the public as I am having to pull away from it because I simply can’t do it. I can’t even keep up with the emails from people interested in buying my headphones.

I spend most of my time feeling completely overwhelmed by all the things I want to be working on but cannot even engage with. They sit in front of me like mirages, seen but constantly fading and unreachable.

I’m still grateful for the improvements I have made since before Abilify, but I’m devastated by loosing so much all over again.

So that’s where I am now. Lots of uncertainty about where this is heading because my mental energy and clarity seems to be decreasing steadily. But I am still much better than I was in 2019 and remain ever hopeful of new treatments and a cure on the horizon.

I just thought I should share, since my story is so public. Getting better and then worse again is something a lot of us have faced and it is absolutely devastating for all of us.

ps.
Please do not respond to this in comments or private messages to me with health suggestions. My father knows every prominent ME/CFS doctor in the world, and I honestly just do not listen to health advice from other patients. I know you're just trying to help and I am grateful for that spirit but it’s not worth my time and energy. "Have you tried…" I stop reading right there. ;) There’s only so much I can read and some obscure herb or magical healer isn’t one of the things I want to hear about. With respect. The only exception in this case might be if someone has had Abilify stop working and got it to work again. I would like to hear about that.

We have all experienced these improvements and then relapses or declines over the years of having ME/CFS. Let’s all try to breath out a bit of the burden and expectations we place on ourselves to perform or produce and let ourselves just be sick. Sometimes that’s the best we can do. Right now, that’s the best I can do. And I’m really struggling to accept that.

love,
Whitney

   

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