A friend from grad school and I reconnected via Facebook a couple weeks ago. She lives in Northern, CA near the Oregon border. We'd lost touch for various reasons (writing a dissertation and doing demanding post-doctoral residency at a large HMO in addition to managing a private practice will do that).
She emailed me Tuesday because she was going to be in the area the following day and wanted to know if I wanted to get together. That makes two visitors in one week's time. Something that would have been impossible 2.5 years ago and one visitor alone would have resulted in at least a 2 week crash.
Last week my friend and I sat and talked for 4 hours. It was great! One of my favorite things is having conversations. I love the process. I thoroughly enjoy getting to know people because I have an innate curiosity about almost everything. It's nice to get back in touch with that feeling again.
I got up the next day with only mild lingering effects. I went out and ran errands, did a lot of gardening, and was still able to do my research.
I thought about how impossible that would have been in 2010. Not only was it impossible but I gave up hope of ever having any sort of life. I had sort of resigned myself to simply surviving each day rather than living it.
The first 4 years of my illness were at the severe level. At times speaking above a whisper felt like too much.
I tried all the treatments out there except for stem cells, Rituxan, gcMAF, and Ampligen. All of them. I spent countless thousands of dollars. My entire life savings went towards treatments with little to show at the time.
After 7 months on Valcyte I tried Valtrex with no results. then Famvir with no results. I tried LDN but it only exacerbated the neurological stuff. I did Cheney's stem cell protocol in preparations for stem cell treatment, did Cell Signaling Factors (a la Cheney), Live Cell therapy injections, treated lyme, babesia, B12 injections, methyl B12 injections, the methylation protocol, and so on.
In 2008 my CFS doctor wrote this letter for me when I was in the reconsideration stage of the SSDI process.
In 2009-2010 (til September) I was pretty much bedbound. I was unable to talk on the phone for any length of time without crashing. If I had a medical appointment I would have to take a shower two days prior to the appointment to allow myself enough time just to recover from the shower. I needed help with showers even.
My bed was maybe 10-15 feet from the bathroom. I'd be able to get up from bed walk a few steps before needing to take a break. Many, many times I'd have to lie down right on the floor so as not to faint. Or I'd make it to the bathroom but would feel so faint while going to the bathroom that at times I had to stop and lay down immediately.
I could no longer go into stores without feeling as if I would faint.
I was having frequent staph infections on my big toes. I had a total of 5 staph infections resulting in minor surgery to remove part of the toenail. I had to have this surgery done twice on each big toe (getting shots between ones toes hurts).
When we went to look at houses to purchase I'd have to lay down in the back of the car to travel the 35 minutes. Looking at houses and remaining upright were challenging at best.
We bought a house and moved in September 2010. I decided to give Valtrex a try again because I was feeling so bad physically and was desperate for any improvement in functioning. I had little hope.
We moved on September 15. The day before I started Valtrex.
I noticed an improvement in mood upon moving. I also noticed a significant increase in back pain which I now understand as my body's expression of the inflammation process. I had back surgery in 2006 to remove a large herniation that was compressing nerves (so there's a history of back problems).
I saw an orthopedic surgeon who prescribed physical therapy to see if that would help. Physical therapy? I thought to myself. I was pretty certain I wouldn't be able to attend PT twice a week.
Not only was I able to attend physical therapy twice a week but I noticed a significant reduction in PEM (one of my most disabling symptoms at the time).
There were other improvements as well. At the time I thought Valtrex was the reason I improved.
In November 2011 my relationship (domestic partnership) ended so I went and stayed with my sister and her family for the next 6 1/2 months.
I had even more improvement. Suddenly I found myself doing their laundry as a way of saying thanks. This is a busy, active family so each week I'd wash and fold ten loads of laundry (plus my own). Not only was I able to do laundry but I was walking my dog Chelsea (who sadly died a couple months ago), plus interacting socially on a regular basis.
Given the amount of stress I was under I should have been doing a lot worse. But I was on antivirals and antibiotics. I continued to believe they were the reason for my improvement.
At least I thought so until I moved.
I moved to El Cerrito in May of 2012. I found out I was living in a building that was water damaged. The previous tenant had complained (and subsequently moved) because of mold. Another tenant in the small complex had recently died of kidney failure (he was on dialysis).
Within a few months time I noticed my functioning starting to decline. By December I had a significant increase in symptoms as well as muscle weakness in both legs. I noticed the muscle weakness was much worse in my apartment.
I started feeling woozy again. I noticed my ability to be in stores reduced. Doing errands became difficult. I was no longer able to walk Chelsea like I should. I became worried I was on the road to becoming bedbound again.
The only thing that changed was that I had moved. My treatment remained the same.