Okay, my title of today’s blog may be a bit of an exaggeration, but compared to the rest of the week, I am happy to say that I finished out strong, and felt pretty much like a rockstar.
I was pretty much couch bound this entire week, just getting what I had to get done at work, and heading straight home to lay down and rest, or take a nap. The house clutter was getting a bit ridiculous, and there were literal tumbleweeds of pet hair on my floors. It wasn’t even worth the hassle of showering, one, because I knew I would pass out, and secondly, I was a sweaty mess and would come out of the shower continuing to be a sweaty mess. Thanks Babesia! Ew, I know.
Gayle did a lot of detox work on me this week, and used epsom salts as well as some essential oils that I don’t seem to have a throat reaction to. Funny, how some Lyme patients swear by them, but most I cannot even be in the same room if a bottle is opened or my throat completely closes up. Peppermint, citruses, and lavender seem to be my safe ones.
Wednesday was the worst day for me. The first day of Flagyl. I woke up in the morning, and just getting out of bed and standing, my heart raced around 165 bpm. That’s pretty high for just standing. My blood pressure was normal however, at 116/63. I pressed my button, sending the hospital my very short information, but I have yet to send them the full download of my experience.
I just mentally haven’t been able to. Maybe next week. I know it will just leave me frustrated and enraged, as I will not be believed, there will be no answers, and my favorite one yet is repeatedly being told I am some sort of recreational drug user/alcoholic/party girl. News to me! *Rolls eyes* Like I said, I will wait to send them the information. I am not in a rush to be beaten when I am already down.
I did what I could for the work day, and had several errands I wanted to run: go to the bank, the post office, pick out cards for Father’s Day, graduations and birthdays, get gas since my car was running on fumes.
I pulled into the little plaza, took one look at it, and it seemed like miles and miles away. I was completely fogged and depersonalized, my arms felt like they were weighed down, and my legs were rubber. Yup… this isn’t happening today. I really wanted to get everything done, but I really know my limits, and I knew what would happen. I really didn’t feel like someone scraping me off the ground, or even worse, call 911. I should really have a Flava Flav clock-sized necklace that says NEVER CALL 911. Then maybe I would be up for more challenges on my own. People would probably think I was crazy though. I suppose at this point I am beginning to think that I am.
I drove home to something very familiar, tears building up in my eyes. And then they were flowing. Then came the panic attack. I couldn’t breathe, completely hyperventilating. My chest ached terribly. I ended up throwing up all over myself, and once that was all done, I had a seizure. My body and brain must have just got completely overwhelmed and overstimulated, as I really haven’t seized in a long time.
My mind was exhausted, and I was exhausted, so I did nothing for the rest of the day other than nod in and out of sleep. I was pretty scared that this was only my first day of Flaygyl. So what was bomb day going to be like? If I am handling something so poorly with a few other supplements and antibiotics, how am I going to be the following day, when I am taking more antibiotics, antimalarials, and herbals than one could dream of? !
Well.. I can tell you that everything changed, and I finished out strong. I needed this so much. I promised myself the day before that I would be able to accomplish everything I intended to do the day before, and guess what, I did. I accomplished that and more!
I ended up starting the day with a shower… for everyone’s sake including my own, took my piles of pills, tinctures, and some gross yellow chalky stuff you may know about 😉 , and off to work I went. I made it there a few hours, doing dub work like bank statements, but I ended up leaving work because I was beginning to get to the point of getting upset trying to figure something out, and I know when I get to that point there is no turning back and it is all downhill from there.
It can surely be very difficult to feel like your head is in the clouds when you are a bookkeeper. That’s for sure. So, instead of having a temper tantrum like a two year old, I called it quits for the day.
I then got ALL my errands done. I went to my bank to take out a bit of money, got the cards I needed, went to the store, got a gift card for a friend’s child who graduated sixth grade, dropped off the card and gift card and headed home. No tears this time!
Did I stop there? Nope!
I decided I still had some spoons left (Read the spoon theory if you haven’t, it is a must for those with chronic illness, or for those to try to understand it), and I went on a mini cleaning spree. I swept and vacuumed, put a load of laundry in, changed my bed, cleaned the sink and toilet, and kind of did a half-assed job dusting..but whatever. It is the thought that counts. WOW!
I didn’t go without having to take some breaks and dry heaving a little bit, but I finished everything. When I sat down and admired my much happier house (remember, a clean house is a happy house!), it put a huge smile on my face knowing that I did that. I accomplished so much when just a day earlier I was unable to do anything at all. And I did this all on an extremely heavy antibiotic protocol. Go me!
I was down to a few plastic spoons in the back of the silver wear drawer so I decided to have Dave get take out. If you know me at all, you know exactly what I got. CHINESE FOOD! It was my week one bomb day after all. I am very happy that I can say I had a better and more functional day. When you have days like I had the day before, no matter how positive or optimistic person you are, you certainly lose some of that good energy and it really beats you up.
Today I am on a little break from treatment. Usually, the days after bomb day are pretty brutal, but I am doing alright. I was a grumpy Gus at work, but I was feeling pretty overwhelmed with more and more tasks to be done getting thrown on my desk, and there was so much paperwork strewn about that you couldn’t even SEE my desk. One thing at a time people! I have been a bit foggy and fluish I guess you could say.
Now, I guess the last part of my week, and a message I want to give you all is something that was a challenge for me, and I did it. I needed a refill of one of my seizure meds and had to get that taken care of, but you know that horrid depression, paranoia, anxiety, hallucinations I was facing on Cipro, as well as being “floxed”? Floxed is a term for when Ciprofloxacin gets at your tendons.
If you missed a little bit about my mental state a few weeks ago, here is one of the articles I wrote : https://kimmiecakeskickslyme.wordpress.com/2015/06/03/june-part-1-two-brains/
This is a good lesson to all of you. I was really embarrassed, as there is such a stigma with any sort of mental issues, and I was almost treating it like it was my own fault even though I know it was either toxins, Bartonella itself, or brain swelling, but I called Dr J and told him about my foot, but was extremely concerned about my mental wellbeing and told him everything. I am also not one to complain. I am one of the last people to call a doctor about a concern. I suck it up (I usually get a lot of guff about this because apparently most of my “suck it ups” are “ummm… you belong in the ER” type situations). I am glad I didn’t this time.
It has been two very bad rounds like this. Although I pushed through, and I had that other part of my brain tell me that it will all pass and I will be okay, I knew I needed a break from taking this drug. I needed a replacement. Cipro has been one of the most beneficial drugs to me thus far, but I just can’t take it anymore. At least for now.
Imagine if I took this next round, or another, and DIDN’T have that part of my brain telling me it would all pass and to be strong through the storm? I made the right decision, and Dr J fully agreed I needed to immediately stop. When you are in that terrible state of mind, there is no telling what you will do, and all I can say is thank my lucky stars I had a bigger part of me pulling all my strength and having me hold on through the torture because it knew that it wasn’t me at all.
I am glad I set my ego aside. The feeling like I am whining or complaining. This was something that I really had to do, and next week I will be starting my replacement along with my other medications, Clindamycin. I took this antibiotic in IV form, we shall see how the oral form likes me. Either way, it HAS to be better than the mental issues I was dealing with.
If you know or think something isn’t right, tell your doctor. They do not know something is wrong unless you tell them. Be your own advocate. I did, and I am not afraid any longer.
Happy weekend everyone!