Lyme is Like a Box of Chocolates

I've been putting off blogging lately. Partly because I can't figure out what to say, and partly because I keep waiting for better things to happen. I want to have good things to report, not just for myself, but for all of you who helped me get my treatment.

Right now marks three months since my initial Lymestop visits - the time when patients are told that we should start feeling more normal. I honestly don't remember what normal feels like, but I do know that I'm definitely not there yet.

Over the last few weeks, though, I have been seeing very small improvements. The kind of changes that happen so subtly, you barely notice them. For instance, my blogging always used to occur at the 3-4am hour, when I woke up in too much pain to continue fighting sleep. That actually hasn't happened in a few months! Now granted, I'm still taking 3-4 sleep aids every night. I'm still waking up several times in a lot of pain. And the first thing I do when I get out of bed in the morning is reach for my tramadol. But the pain is not so excrutiating that I have to get out of bed right then to take more pills. I'm also able to fall back asleep pretty easily, which never used to happen.

So yeah, I'm holding on to these small improvements for dear life.

Those of you reading this who have Lyme, know exactly what I mean when I say you never know what you're going to get with this disease. Day to day, hour to hour, things change - sometimes drastically. And even though it happens so often, I still need to constantly remind myself of that. Before, it was that I needed to remember that my lowest of lows weren't bound to last forever. But now, I'm finding myself having to remember that just because I have a good day, doesn't mean the next day will be the same.

For example, last weekend I spent the morning putting our Christmas decorations away, because I felt "ok" enough to do it. With Lyme, you need to take advantage of any "ok" moment you get! I like to think that one perk of having a chronic illness is that you can use it as a good excuse for waiting until the middle of January to put away the Christmas cheer. ;) I was able to power through, but as soon as I was done, my body completely crashed. I couldn't move off the couch for several hours. It's a feeling I can't even explain - like when you're trying to run in a dream but your body feels like lead or like you're stuck in the mud.

This is how my energy has been going lately overall. I have a little more to get through my days, but once the work day is over, or once I do one activity during the weekend, I'm donzo. However, I have been able to cook dinner more frequently once I get home from work, which for a while there was never happening at all. I don't even know how much money we've spent on take-out. Baby steps.

My pain levels have been similar in this way as well. I'm still in pain almost all of the time. But there have been days where it's not as intense. Earlier this week I noticed that I went an entire afternoon without having to take any pain meds. But then the next day I had a high stress day at work, and my night was spent writhing in some of my worst pain I had in a while. I used to not even be able to stand more than a minute without tons of pain. For a few days last week, I stood over 10 minutes without pain! But then this week, I was back to normal.

It's unfortunate that stress plays such a big role in my debilitation, and that the next 5 months will be my most stressful of the year. Needless to say, I was amongst the millions who had hoped we would beat the odds and win that Powerball a few weeks ago. As much as I like my job, not working would make a world of difference in my healing process.

Last weekend we spent a day up in Seattle. We walked well over 5 miles, when usually, half a mile is unheard of for me. I even climbed a buttload of stairs from the waterfront to Pikes Market. Man it felt good to have tired and sore legs from exercise, rather than from nothing at all! And even though I had horrible stomach pain all day, I went through most of it without back and body pain! It wasn't until we were almost back to our car that I felt like I could barely take another step. ;) And, well, the car ride home was a different story all together. The stabbing stomach pain nearly had me doubled over all day, but I think I'd gladly take that over the other pain, any day. The next day, my body felt like I had been hit by a truck, but it was worth it to feel alive again for a day. Baby steps.

Then there are my sinuses. A lot of you can relate to these symptoms lately with all the bugs going around - the headache, sore throat, congestion, nausea. You'd think I would be used to it after dealing with it every day for 3+ years. But this alone can really drag me down.

Just a week ago I was thinking that this chronic mold was one thing that just wasn't going to get better. And then on Monday, all of a sudden I could breathe again. That feeling of having a rock stuck between my eyes was gone. I was elated! But all it took was exposure to the world to knock me back into reality again. One sniff of perfume, smoke, or car exhaust is all it takes. And the west-side wetness doesn't help either. Back to doing the neti pot at least 3 times a day. TMI alert here, but I have been blowing out a LOT of black mold. It's disgusting, but I also love seeing it, because it means my body is getting rid of that nasty stuff! Hopefully this means that one day I will be mold free. Although I kind of have a feeling it won't happen until we move somewhere drier. Fingers crossed.

Aside from my pain and sleep meds, I haven't taken any supplements since Christmas. It's an odd feeling, after downing handfuls of the stuff at least twice a day for 8 years. It almost feels like I'm doing something wrong. This post-treatment thing is a little confusing for me, because Dr. S. didn't give me any direction for taking more after my follow up appointment. Yet I know plenty of people who have done Lymestop and are still treating with pills - some even with antibiotics.

I've said this before, but it'd really be nice if there was a cut and dry method for reaching remission. The amount of "answers" I see online every day are overwhelming as hell. It really makes you question whether or not what you're doing is right. Just this morning I saw 3 articles on facebook claiming new ways to kill the bacteria - cannabis, bee venom and stevia. Stevia?? Really?! I think the world is really starting to catch on that us Lymies will try nearly anything to get better.

Still, I feel like I was led to Lymestop for a reason. Even though I feel far from normal yet, these miniscule improvements are giving me hope that I will get there one day. It could be that I'll be one of those patients that take up to a year to get well, but really, what's another year in the grand scheme of things? Even though, you know, we were ready to start a family like yesterday.