It seems like forever ago that we were in Idaho for treatment, but really it's only been 2 1/2 weeks. I kept reading and hearing that the first 6-7 weeks would be difficult, but I obviously underestimated what people meant by this. I figured, "every day is already a challenge, so how could it be much different?" As those that are closest to me know (especially my husband), I don't often like to admit when I'm wrong. But, wow, was I ever.
My plan was to start work the day after we got back. I made it half a day, was out the rest of the week, and a majority of the following week. Now everyone is different - I've heard that some people have been able to work right away, and some people have taken up to 6 weeks off. Of course it's important to remember that everybody handles the treatment differently.
This is something I want to stress because so many people have asked me when I can expect to get better, as if there is a cut and dry date I can look forward to (and well, others even seem to think that I must be all better now that I've had the treatment). The real answer is, I just don't know how long it will take. There are so many factors to consider, such as the quantity of infections and other issues in the body, where the infections are, and how long you've have had them. Based on these things, and the results of the muscle testing, the doctor creates a personalized protocol - and then it's all about how your own immune system deals with eliminating those toxins.
It's difficult to explain to people who don't have Lyme what these few weeks have been like. The best I can do is tell you to think about having your worst flu, along with your most intense pain, and a horrible sinus infection all rolled into one fun little ball.
The worst for me has been my tiredness and lack of energy. I know that most of are you are thinking you know what I'm talking about. The thing is, I know what a normal energyless day feels like, and this is nothing even close. My body feels so heavy and so sucked dry of life that I have a hard time even lifting my water glass to my mouth. I only get up off the couch to go the bathroom, and that's when I absolutely can't wait any longer. I feel like all I want to do is sleep, yet when night comes around, I'm up until 3 or 4am - as if my body is avoiding sleep like it's the plague. I'm remembering now, how the doctor kept mentioning just how tired my body was testing, and I was thinking, "I feel tired, but not THAT bad?" Well I think my body is finally allowing me to feel just how fatigued it's really been all these years.
Of course I have all the other "flu-like" symptoms, nausea, dizziness, stomach problems, weakness etc. But I'm pretty used to all that. I've even had plenty of days with sweating and chills before too. But I've never sweated this much for this long. I'm constantly changing my drenched clothes (which takes a lot of energy by the way!) Gross, but true.
It probably goes without saying that my pain has been worse too - for the first week my pain meds were barely even touching it. I had a follow-up phone call with my Seattle Lyme doc who decided, NOW OF ALL TIMES, that he'd like to send me to a pain management specialist 2 hours away, instead of continuing to dole out these pain meds. Even when I told him about my diagnosis, and that I'm quite sure the pain is from Lyme. I'm sure the thought and stress of no longer having the one thing that helps me get through my day isn't helping. It's not like I want to be on these meds, but I really need the help until I get to a point when I'm feeling better,
The other challenge has been my fungal sinus infection. This is the one thing that I noticed a positive change with right away after treatment, even through the first week we were home. In fact, the first time I stepped out of the house after a whole week of being an invalid, for a short walk to the mailbox, I told my husband how nice it was to not be consumed with the pain in my head - that I actually hadn't thought about it all week! But all it took was a trip back to work, out in the world full of pollutants, to get back to my normal. And every day back it's gotten even worse. Piercing pain behind the eyes, throbbing head, sore throat, you get the picture.
So yes, I have made it to work part time this week - and it's been great feeling some semblance of normalcy. I started to believe that I was getting over the miserable hump and on my way to healing. But I should know more than anyone that one decent day doesn't mean jack squat. Yesterday I woke up feeling just as bad as I had last week. And this is how Lyme goes. One day, or even one moment, you feel ok, and the next you're flat on your back.
Even now as I write this, I feel ok. Earlier today, I got up to take my pills and make breakfast, and I blacked out and got so lightheaded and nauseous that I had to beeline for the couch. Moving was not an option. This has happened a lot, and usually has me down for the count for hours at a minimum. That walk I was finally able to take last Saturday? It made my whole body feel like I was sore and bruised - like I had been hit by a car, or had slaved away a whole day in the gym. There are so many things like this that I just can't put into words to describe. I'm reading all this back to myself and it really doesn't even sound nearly as bad as it really is.
As you can imagine, weeks of laying on the couch can get a little depressing as well. Even though I'm hopeful that this treatment is the answer to my prayers, it's difficult not to feel like these symptoms are never going to end when I'm in the middle of it all. I had to miss out on my husband's birthday dinner, and felt especially lonely that night, but am glad he got to get out and enjoy time with his family. The next day was Halloween, and as fun as it was to see Facebook blow up with fun costume pictures, it was an obvious reminder of things I can't do, and the kidless, event-less life that we've been leading for so long.
Three months (when people start feeling better after treatment, on average) seems like a long ways away, but I'm not giving up hope. I know it's going to get worse before it gets better. And with everything the doctor found, I have a LOT of toxins to eliminate from this body. It will be a long, hard road, but I'm looking forward to seeing that light at the end of the tunnel.
