Many people do not understand that when a person suffers from a chronic illness, they will have good days and bad days. The person living with a chronic illness may have a day that they feel well enough to go do something and not be at home in bed or “couchin’ it”, so the healthy person only sees that side of the spectrum. “Oh, he/she is better now.” Allllllll better! Good to go!
Nope. People just don’t get to see how terrible it is when you are sick as hell at home and struggling, or see how hard we are trying to pull it together in public so no one realizes we are falling apart. If you have been sick for a long time, you learn to hide it pretty darn well.
In the beginning of the week, I had a “drop” seizure and busted up my knee.
Other than my boo-boo, I was okay, just exhausted afterward, and thankful I didn’t hit my head, or fall on the puppy. I was a little annoyed however, as I haven’t really had any seizures for quite some time.
I am not sure of the cause, it was random with no trigger (light/sound/stress/overstimulation). Toxins? Bartonella having a party up in there? Maybe it was just a plain old “miss fire” in my brain. Who knows. Either way, I knew that this was just a bump, and remembered that there is always tomorrow, and knew it would be great. Positive thinking can make a big difference.
Here is a little more information about the many different types of seizures, as many are only familiar with grand mal seizures. Perhaps this information will be useful to you… remember, knowledge is power!
Later on this week, I went dress shopping with the ladies to pick out our bridesmaid dresses (Yes, I’m a bridesmaid,YAY!). And for the first time in 3 1/2 years, I went to a mall and walked a bit to go grab a bite to eat.
Now, I am not going to lie, I faked it that I was handling it well, but very quickly, I had rubber legs, numb feet, and began to get dizzy. Even just looking at the glass that you could see the first floor in this two story mall messed me up.
Once again, as I had mentioned above, people often only see good days and not the ugly, so it is assumed a lot of these things are easy and I can do all sorts of things on a regular basis. Thank the lord that I didn’t have some sort of embarrassing episode. Dave is usually with me, and usually has to carry my ass out of wherever I try to go.
I just didn’t want to say anything or be a pain in the ass. I did mention how hard escalators are for me, and my friend grabbed my arm to go up it, but we ended up just using the stairs instead. I got my workout on, that’s for sure! Other than that, I just wanted to do it. Feel like I have accomplished something.
I need to start doing these things again, even if I fail, if I want some normalcy again. It probably would have been much easier if I had my sunglasses on, but I didn’t end up bringing a pair since it was already nighttime.
Even on “baseline days”, I am never “good”. I haven’t been in years. Unless I am having an obvious tic, loopy, turn 50 shades of gray or white with giant bags under my eyes, it is pretty invisible.
But guess what everyone? I succeeded. No one had to drag me out of there. LOL I can say I have been to a mall recently. I went dress shopping. Other than not feeling so great, I had a fun time getting out of the house and doing something with the girls.
I was actually clear enough to do my business’s taxes the following day. I figured I would immediately crap out and be toast for the next several days after my little mall trip. I think it is kicking in with some of my other symptoms and syndromes now though. But that is okay. I feel pretty accomplished and positive.
I clearly seem to be making progress with this new protocol, and this is the week I will be adding in bio magnetic therapy, which I am beginning to feel really excited and optimistic about. Fingers crossed I will keep getting better, have more of these days that I can do something even if it is hard, and get my life back.
In the past day or two, the fogginess and tiredness have kicked in. I have had a few short naps even though my sleep schedule has improved greatly since bringing Olive home.
Just look at her! Don’t you want to squeeze and kiss that little face? By the way… that chair bite mark was from our older dog. She is innocent on that one.
I was doing really well with my POTS symptoms calming down, but with a lot of standing to let the pup out and walking, I have been getting dizzy and lightheaded, especially in the morning and at night. I have just been taking my Florinef and I have used my recumbent bike to try to get my legs “flowing” again.
I have still been having little annoying tics, like a quick body shutter and very easily losing my train of thought. Honestly, that is the least of my worries, and that doesn’t bother me. The tics do not physically hurt me, and hey, maybe whatever I was going to say wasn’t all that important, or I will remember it later on.
Even though I have had a few short naps, I am no longer taking 3-4 hour naps in the afternoon or evening and staying up until 1 or 2 in the morning. I am going to bed around 10. No new meds either!
I have been debating on when I should start my protocol again. Lately however, I have been making a lot of poor food choices. Pizza, my father-in-law’s famous stuffing, lots of Chinese food, a piece of coffee cake. My stomach hurts, even to the point I can’t sleep on it, so I think I am going to wait another week. Lots of gut healing, detox juices, some Diflucan. I want a fresh start when I go back into battle.
Now that I am all done my first round of treatment, I decided that I am going to tweak it. Yeah… I know this isn’t advised (I highly recommend you converse with your LLMD before making changes for your safety), but I could have a medical degree based off of experience. I am going to skip my artimisinin. At least that is just taking something out. I get really nauseated and I feel that is the culprit, and I already am a hot mess by the end of each week. Droopy faced and just about useless.
So, healing this week, starting my biomagnetic therapy, and I am just going to relax. At least try to… it is hard when you have to watch a puppy like a hawk. I’ll post an update on the biomagnetic therapy for you all! Happy Sunday.