Last week I knew it was time to start treatment again. I have been allowed the option to have two or three weeks off, but my body always seems to tell me when. I guess you can say it is a damned if you do, damned if you don’t sort of thing. I have a little glimmer of blue skies after the herxes calm down, but the bugs begin to have a party again, and all my symptoms come rolling back full force.
The first day of my protocol, I did surprisingly well. I had my usual loopy feeling, but I was okay. By the evening however, everything turned upside down, and it has been like that ever since. It has been an incredibly miserable week. Physically, emotionally, it has been completely draining. It has been rugged.
As much as I try to suck it up and at least go out to dinner with Dave on Saturday nights, it was another stay at home night. I always feel like he is disappointed, because it is “Dave and Kimmie” time. Even though we are still together at home, it really isn’t the same as going out together and doing something, since we stay at home every day of the week. Does that kind of make sense? It always leaves me feeling guilty…. even though I probably shouldn’t. Although I am a “mind over matter” believer, I know my limits. And so it was take out and a Steven King movie, since it was Halloween night.
All week, I have been so blurry, disoriented, lightheaded, and my legs don’t seem to want to work. This morning, I nearly fell reaching for my boots, pulling out my back yet again, and the muscles where my achilles tendon is in my left leg. Sometimes, it is just way better to fall. After all, I would have fell into a pile of shoes, sandals that I haven’t taken care of yet as I have not accepted winter is coming, and boots. That would have been much less painful than trying to save myself.
In the office, I have been in my own little world. Luckily, things have slowed down a bit this time of year. I have at least formed a check list of things to do on my desk… accomplishing tasks on the list and checking them off is another story. But I have a list. Haha. My week has basically consisted of ticking and dry heaving at work, as this treatment seems to be a doozy on me. I have spend afternoons and evenings jerking on the couch, and slurring my words.
Note to self: Do not ever cook corned beef in the crock pot, or boil cabbage (well.. Dave did, he has taken over a lot this week), when you are nauseated. The smell would not leave my nose. For the entire afternoon and night, I had that awful feeling in the pit of my stomach like there is a bunch of rocks, and that lump in your throat that you could throw up at any moment. I opted for my own greasy gluten free mac and cheese to coat my stomach that night. It helped for awhile, but after a few hours everything came back even worse.
When I first started to get really sick, I would always tend to forget where I was going while I was driving. I had a sticky note system. It worked pretty well. “Store”, “Bank”, “Home”. I would forget where I was planning on going, but a truly terrifying feeling is completely forgetting where you are, what direction you are headed, where you are going. Nothing was familiar. I began to panic. After a bit, I recognized a lumberyard and knew where I was, and that I had just left work. I just might have to o back to my sticky mode method again, so I at least know where I left from if I am in that situation again.
That day, I knew I had to stop at the bank and see if some scripts were ready at the pharmacy, but just sat in my car in the parking lot. The building seemed daunting to me. Although it is in I guess you would call a little plaza, if I am thinking of the right word, and it is right next to each other, I just couldn’t do it. Every time this happens, it makes me incredibly sad. And so I drove straight home, let my dogs out, and prayed they wouldn’t bug me for dinner early because all I wanted to do is sleep.
And there is my favorite, Flagyl days. It is like my body knows it is coming, and automatically wants to reject it. My pill was in my mouth, along with another antibiotic, and I could feel it dissolving. That beyond disgusting, metallic taste. My throat just wouldn’t let me swallow it.
Instead, my body decided it would be awesome and I began to throw up. It dribbled down my chin as I was trying to hold it in. I didn’t know what to do. I needed to take these pills, I had already taken my seizure meds, and I was afraid if I tried again without knowing exactly how much had dissolved or what would come up, if I would overdose or something if I took them again. Or lose my much needed seizure meds… AHHH!! What do I do??!!!! I did what I thought I needed to do. Swallow. Ewwwwwwwwwwww. That was beyond disgusting.
I always hate bomb day, the day I take everything under the sun, but always look forward to the silver linings, and that is Chinese food. For the first time ever, the thought of Chinese food made me sick. Even envisioning the white box with the red Chinese writing made me want to hurl. No Chinese on bomb day.
The second line of treatment hasn’t been a whole lot better. My hands and feet are freezing and purple, my stomach has been in stabbing pain. Although my legs are so numb, I at least know they are still working as I have made a zillion trips to the bathroom. I think I am having a major Candida issue, which might be why I am having stomach pain and bathroom issues. I can also tell when I need to get rid of yeast in my stomach and intestines by foods I crave. I am a chips and dip sort of girl. All I have wanted is candy, soda, ice cream. Things that I never have. I think some intense detox is needed for this upcoming break.
Yesterday I had a complete mental breakdown. I lost it. I bawled my eyes out at work, and up until I finally fell asleep at night, I kept tearing up. I felt so sick. My mind got the best of me. I felt at a complete loss of what to do. Something isn’t right and I know it. What it is, I am not sure. So many people have been sick for so long, much longer than me I realize, but I also have seen people that have made remarkable improvements in far less time that have started even after myself.
It makes me jealous to see these people have lives. Function. I know you can’t compare, every case is unique and it is like comparing apples to oranges, but I wondered if I am on the right path.
I was angry. I was no longer feeling like a warrior. I no longer felt brave, and certainly not very positive. I wanted to give up. Not in general, as I kind of can’t at this point, the point of no return, and I am not a quitter, but wondered if it was best to stop until my appointment in December.
It is hard for someone to really understand this unless they are in the exact spot. There is no black and white with Lyme treatment. I don’t know if the treatment is hitting me so hard, or if the treatment is as well as in general I am backsliding. Like I said, no black and white. I have spoken with someone with a similar treatment, a little less aggressive but very close, and she was also incredibly sick during this. She gave me some hope though, that after it was over she made remarkable improvements.
I have had a lot of advice, and I truly value a lot of opinions from those who know and have been there. I have decided to set these thoughts aside right now. My mind has been all over the place. Ugh.
I suppose everyone is allowed to have a day like this. Just cry. Let it out. I am not like that though. I am positive and hopeful. I am not sure what was going on. Maybe it wasn’t really a mental breakdown. Maybe the bugs were going apeshit and getting the best of me.
Today is the last day of treatment for this round of treatment. Halle friggin lujah. I woke up refreshed mentally (pretty Babesia sweaty too) and to my usual self, and although I haven’t really thought of a game plan (I see Dr S tomorrow for an appointment so maybe I will get his thoughts… I really think I might just need a huge cleanse at the moment, and I will go from there), I have done better today than I have been. Spacey, raccoon eyed.. Miss Butterfingers at work, but a pretty big improvement. I at least feel more alive than I have this entire round.
As I said, it is my last day. I have had so many tears from everything being nothing short of hell, but today I can’t help smiling. I pulled through. I lived to tell the tale. All I can hope for is that I have some blue skies coming my way. I could really use it. I think there will be. No, I know there will be. That is the only attitude you can really have, believing so hard that your dreams come true.