Every once in a while over the past year, I’d take out the camera and take one or two photos of something because I felt like I needed to – a birthday, a book cover for a post, or a quick selfie with the baby because he is my last child and once he is grown there ARE NO MORE. But most of the photos weren’t very good because the apathy was just too thick and I didn’t take enough pictures to get a good one.When I downloaded photos from my camera, I would have 3-6 new photos at a time. Today I downloaded 217 new photos. I’d taken them over the course of a week.

That’s no accident, because it’s been just over a week since I started taking low dose naltrexone (LDN). This is NOT an ad. I want to document what’s going on with me so when other people who are trying this route look on the internet, there will be one more place to go to get information.

LDN is taken at night, to coincide with your body’s endorphin production. The morning after I took it for the first time, I gradually came awake doing a silent full body scan and trying to figure out what on earth was going on. The pain, which is regularly a 6/10 pretty much everywhere, was basically gone.

The change was so drastic that my brain couldn’t compute. LDN starts with a tiny dose (1.5 mg. in my case) and you gradually taper up. So the results I got were immediate, and on the initial starting dose.

For years now, I’ve gotten maybe one good day a month, and sometimes less, but every day after I started the LDN was good. I still had some joint pain, but it was just a dull ache and barely noticeable compared to what it had been before. The acid burning feeling where my each of my bones meet was gone.

That first day, I walked nine miles. I kept walking every day after that, 3-4 miles a day. I cooked dinner twice. I started taking photos again. I ate lunch most days, which was unusual because I both had energy and motivation to do something other than graze at midday.

Every day that I woke up and still felt good was a miracle. Trying a nontraditional, low risk medication and having it actually work is amazing. It’s the first time in memory that I’ve had more than one good day in a row. There were eight. The only issue I had was lucid dreaming, which is a common side effect with LDN. It usually goes away after the first few weeks. “Lucid dreaming” brings to mind the vivid dreams I’ve always had in which I often had some agency in what would happen next, or a lack of fear because even though I was dreaming, I KNEW I was dreaming. Even when things got terrifying, that I knew I’d be OK.

LDN lucid dreaming was not like that for me. It would happen as I was drifting off. Suddenly my vision was filled with images of horrifying and weird violence. My family’s murdered bodies strewn across a room (Remember in Harry Potter when Mrs. Weasley sees her worst fear, and it’s the bodies of her family?). Horror flick stuff. Just for a few minutes before I was completely asleep.

It was like I was both awake and asleep, and it was the last thing I wanted to have in my head right before losing consciousness. It happened about three times the first week. The Chaplain was next to me two of the times, which was comforting. I fell asleep before he came to bed one night, and facing the scenes of terror alone left me shaken. Even so, it was a small price to pay for feeling amazing all day, every day.

Then Sunday night happened. I hadn’t sleep much Thursday night, not all all Friday night because I worked the night shift. I slept all day until 6 p.m. after my shift, but then didn’t sleep well that night (no surprise). By Sunday I hadn’t slept normally for four days.

How can you know which straw broke the camel’s back? Was it all the walking all week long that finally caught up with me? The terrible sleep over the weekend? Something else? But Sunday was my last good day.

Sunday night, I took one of my other meds, methotrexate. An hour later, I had a headache that wouldn’t go away.

I’m still learning the lingo, but methotrexate, or MTX, is a med I take once a week along with daily Celebrex for PsA, or Psoriatic Arthritis (this was a new diagnosis after years of my pain being called RA. I have switched back to RA along with getting a new doctor who listens to me.)

The Celebrex is an NSAID (they reduce inflammation, so it controls symptoms) and the methotrexate is a med that works on the disease process (which means it prevents further damage). Of all the meds my doctors have tried so far, MTX is the first medication I’ve taken that has caused negative side effects (other than the lucid dreaming LDN blood bath).

MTX causes nausea, kidney and low back pain, and headaches. Which is sort of ironic for a medication that is supposed to help with chronic pain. The internet has confirmed that the way I feel after I take it is not unique.

I anticipated it this week, and chugged as much water as I could before and after taking it, but I went to bed Sunday night with a terrific headache that wouldn’t be wooed by Tylenol, and woke up Monday with the familiar pain of burning joints.

The headache came back later that morning. By 10 a.m. I had taken a full spectrum CBD/THC gummy. I have never used those this early in the day, but I was miserable. I was on the sofa by noon and slept for three hours. It’s 8:30 p.m. and I haven’t moved.

It was my first bad day since starting the LDN.

According to the instructions that came with the LDN, I’m supposed to taper up to 3 mg on day 10. Until now, I’d been feeling so amazing, I was thinking, why increase the dose when I already feel great? Tonight, Day 11, I’ll be increasing to the 3 mg and seeing what happens. I don’t want more days like today.

Until Sunday night, I was looking forward to crowing about how I’d finally found a solution to my pain issues. The LDN didn’t help with fatigue – I took a nap basically every day after starting it, which is much more often than usual. But when I wasn’t asleep, I felt great – physically and mood-wise. It was night and day from the reality I’ve been living with.

Today, I’m feeling a bit mixed up. I’m grateful for my kids, who recognized things were off and let me rest. Grateful for the amazing weather this past week that allowed me to enjoy every moment of feeling good. I made hay while the sun shown, with my hands, with my camera, with my brain.

With so many good days in a row, I was both wary and cautiously optimistic – could this be it? Could I have found the thing that finally helped me feel OK again? Then today knocked me back down to the ground. What if there are a lot more days like this?

The Chaplain and I met for a moment in the kitchen tonight. It was one of the few times I left the sofa. We had a check-in about the day. Despite it being tough for both of us, we found ourselves expressing gratitude, and that is what I want to end with.

Today was really hard, but I’m thankful for a partner who jumps in to make dinner and do the dishes and supervise bedtime when I’m not up for it. I’m grateful for a supportive family and a quiet, damp day full of blooming things. I’m grateful that I was able to watch a show with my kids without my mind or body trying to tell me I needed to be doing something else instead. I’m grateful I’ve been able to photograph all the flowers and people this week, hem the shirts, make the baked ziti, so that on this day, when I managed to do literally nothing, I was able to accept it for what it was.