I was going back through some old symptom notes in preparation for an article I’m writing. What I found was truly scary and depressing. It’s amazing how we can distance ourselves from our worst memories. It’s hard to believe that this was my life… day in and day out… for years. If you can even call it a life. It feels like a horrible dream.
I might regret being this vulnerable, but for now, I’ve decided to share a sampling here. The rest of the notes were just more of the same, over and over and over again. Most were written by Brett. Some were written by me. Keep in mind that I lived this life primarily from bed. I did not attend the prayer meetings I mentioned. When I talk about being out with my family, that means I left my bed to sit in the living room. I did go out for appointments. Sometimes I was well enough to shop for craft supplies, usually in my wheelchair.
This is where I would be without mold avoidance. This is where I was under the care of the top Lyme Disease specialists in the country. This is why I do what I do. This is why I grin so joyously at the Grand Canyon. My face is sunburned, my hair is dirty and I barely slept because I was shivering in our tent that night. But I’m happy. I’m happy because I’m finally at home in my own body.
A sampling of some bad days…
8.20.13 – Tuesday
Weird feelings again: burning sensations, numbness, vibrating under the skin, enormous head pressure, horrible headache that comes in waves, thinking problems, lots of achiness, twitching muscles, air hunger, etc. Neck pain has been really bad, she says, some of the worst she’s had.
11.30.14 – Sunday
Horrible night of pain, screaming and crying, moaning and groaning, etc. Finally took half a Percocet tablet and it helped. In the morning she didn’t feel better at all though. Pain continued. Decided to take Tramadol instead. Seems to help. Makes pain bearable. She still hasn’t gotten over the cold. And hasn’t had any kind of consistent good sleep for the last month. Good nights here and there, but never more than two good nights in a row.
01.06.15 – Tuesday
Woke up with a horrible pain attack — Level 7 pain. Brett and Ramona were sitting in the living room together when Brett heard Ana moaning and crying, so they ran in together and Brett started getting Ana’s heating pad and went to heat her rice bag — and Ramona, knew just what she was supposed to do. She jumped right up on the bed and laid down on Ana’s chest, just the way we have her do when Ana needs comfort. And she stayed right there for a long time and it really cheered Ana up.
Heating pads helped with the pain attack some, and the bath really helped with Epsom Salts.
Ana had a better time during the middle of the day when she was crocheting and listening to her book.
02.13 – 02.15.15 – Friday – Sunday
Big, long panic attack in the evening on Friday.
Saturday was horrible. I had a really bad pain attack. Level 9 pain attack (back spasm). Worst episode since I can remember. Bath helped some. But I was anxious and over-stimulated afterward. Then I had a panic attack in the afternoon by myself.
Woke up in a ton of pain again on Sunday. Honestly the mornings are just terrible every day. I wake up and I don’t think I can make it through the day. And the nights are horrible too, because I get so anxious and then I feel scared of sleeping, because I have nightmares and I just know I’m going to wake up and have to repeat the process.
Today (Sunday) we watched a movie with my family and I was out there a long time and I got really overstimulated. I’ve just felt gross and blah all day. I feel yucky and the malaise is overwhelming. I feel sick, not just in pain. I feel sick.
For whatever reason, I just hate eating. And I get stressed when I have to eat, because it feels so overwhelming
2.28.15 – Saturday
I didn’t realize how overstimulated I was getting (partly the fault of all the movies and partly the fault of all the people downstairs). The stimulation attack got worse even with blocking out the noises and everything and it got my skin all itchy and tickly and I had to take all my clothes off, wear a mask, put on ear muffs, and then my pain rocketed sky-high.
And I went to bed really late because I felt so awful and it took really long to settle. Brett was really sweet and rubbed my feet even though it was late at night.
The good days don’t sound all that wonderful…
10.27.13 – Sunday
Ana has hope because the Fentanyl Patches are working and we are going to see Dr. Bransfield. Her pain was good again today, but she felt a little more achy than yesterday.
Today was a bad good day. Ana was so fatigued she slept almost all day really deeply.
Pretty big emotional episode over Brett and the family leaving to go see Brian Reagan. Also a lot obsessive thoughts and irrational fears during the evening.
01.28.15 – Wednesday
This was a really good day. First day Ana felt like her pain was finally stabilizing.
Massage appointment, which really helped once more.
Surprise Chipotle lunch date in the car! Ana was really hungry and I had the bag of Chipotle waiting on her seat in the car and she was so excited. She was so happy she kept saying, “YUUUUMMM!!!!” even before she had eaten anything. We ate it together in the car, right outside Mama Goose and Ithaca Made. And it was a really nice time together and Ana was really happy the whole way home. Hooray!
02.03.15 – Tuesday
Lots of pain in the morning and early afternoon.
I felt cheerful today and more mental energy. I wrote some things to a lady who has Lyme and I answered a bunch of short Facebook messages. Leading up to the prayer meeting I was messaging the lady on Facebook about Lyme Disease, but then my brain got really foggy and I had to tell her I needed to stop.
Started having weird feelings and anxiety (and mild panics, hyperventilation, etc.) right when people were arriving for prayer meeting. Turned into mild out-of-body feelings again, disassociation, brain fog, etc. Sounds were freaking me out. I also had to take off all my clothes and lay on the soft blankets because of the overstimulation. Took Lamictal a little early again and it really helped.
I got gloomy again in the evening. And I’ve been having involuntary jerking whenever I relax or stop doing something and try laying still for awhile, the seizure activity starts.
02.06.15 – Friday
Made chocolate with Brett. I’ve been more active — but I almost feel like it’s a way to channel my stress and my pain. It’s sort of restless activity. I’m just very very stressed. The best thing that happened today was watching a documentary with Jason about dogs.
I really just feel like I’m running, running, running away from my mind and my body — like all my symptoms are chasing me and I just have to find things to do all the time so I don’t lose it and start crying too much or lose it and need too much help.
02.18.15 – Wednesday
Horrible back spasm again in the morning that made Ana feel like her body was torturing her. And it was just so sad and terrible. It eventually calmed down after two Epsom Salt baths. It seemed like it may have taken longer to calm down than the others. It lasted around an hour.
We had a great time together at Sew Green before Ana’s massage appointment, buying buttons and ribbon. Really fun time.
Later in the day Ana started feeling really yucky and awful like her brain was filled with peanut butter and her spine was stuffed with cotton balls. And she had to keep kicking her legs or else her spine would be too tickly. And she felt disconnected from reality and really miserable and nauseous and all her muscles were nauseous too. And her headache was horrible and really bad too. Worst in a month or more.
My days couldn’t be more different now. I sleep easily and peacefully. I wake up with energy. I sweep the house. I sit down to read. I do the laundry outside in 102 degree weather. The worst pain I have is a sunburn. I can’t even remember the last time I took something to reduce pain. I cook my own meals and enjoy eating them too. Conversations and music are pleasant again. I take our two dogs on long walks up and down steep hills. I laugh a lot and make up silly songs. There’s really nothing like being at home in your own body.