I wish I had great news to share with all of you about the past few days. I don’t have that great news for you unfortunately. At least I know that no matter what, there are always silver linings. Today at least has been a much better day than the past several that I have had. This was my huge silver lining.
My last post I know was kind of a Debbie downer, but I am sure a lot of you can relate. Although I never would want anyone to feel or go through what I have, it is nice to know that I am not alone during this journey.
The other day was downright terrible. I woke up with serious non-period period cramps, which was causing pelvic pain, lower back pain, and pain radiating down my thighs. It was so painful that I didn’t know if I was going to throw up or pass out. It will be a Halle-friggin-lujah moment when I finally get an answer to what is going with my body. It will happen sooner or later, and my fingers are crossed that my new gynecologist will figure it out.
I contemplated heavily writing this, but I feel I need to share everything and not hold back my story. After contemplation, I thought, why shouldn’t I share this? It is a part of me and how I feel, and none of it is on me. I cannot help the way I feel.
It was my Father-in-law’s birthday, so we headed there for dinner. I was still feeling sick and out of it from doing my office work, but decided to go over with Dave. We sat at the kitchen table and were talking. All of a sudden, I completely spaced out and was out of it, likely blankly staring at nothing.
An absence seizure is a brief lapse of awareness, sometimes with staring. It begins and ends rather quickly so many confuse it with daydreaming or not paying attention. They are caused by abnormal activity in one’s brain.
Right after I started coming to, a simple partial seizure then followed. I was still blank but was then aware, I could not speak, move, and everything was blurry. All I knew was that I had a hand waved at me, and across the room at me, and everyone was laughing. Laughing.
I know these seizures are exactly what had happened because of the overwhelming exhaustion that followed the episode.
Here is some more information about types of seizures! : https://kimmiecakeskickslyme.wordpress.com/2014/03/11/lyme-and-seizures/
It is embarrassing when something like this happens, and I could feel emotions of this filling within my body, almost like that feeling that your heart is broken inside from the laughing, but I chose to let it go. A big part of that was the completely exhaustion that left nothing left inside of me.
Usually people do not know when one is having a seizure and I know that is what happened.
But it was resonating on me yesterday and not only did it bring me back to my memories of people hurting me and making me embarrassed about my verbal and physical tics when they were far worse, occurring over and over all day and into the night, but I just plain thing it is wrong when you know when someone is sick and maybe there could have been a problem.
Just because I was not having a myoclonic or grand mal seizure, I feel laughing or waving your hand at me is still uncalled for, even if you really have no idea what was going on. As I have always been told growing up, if you are not laughing with someone (I clearly wasn’t laughing), you are laughing at them. Funny is when everyone is involved.
I had a huge blowout with Dave about this, and I know that it was not something done with malicious intent, as they didn’t know, they haven’t lived with me for the past two years so they do not have the knowledge about this, but Dave should have known better.
He knows I do not space out. Especially for any period of time and be unresponsive. Dave should have known better. We both didn’t see eye to eye on this issue, and my argument to him was “Are you a jerk, or are you an idiot?” He chose idiot. He said other than exhaustion he really didn’t know. Yes, I certainly was exhausted, so he did get that one small part of it right. I think either way being laughed at hurts. He just didn’t “get it” talking to him about it.
I allotted myself to be angry, sad and hurt for the day, but am now okay. It isn’t healthy to be angry, so I let it go.
When the exhaustion sets in from having seizures, I can easily sleep for 15 hours. I didn’t have that option as I had to work the following day. One does not know this level of exhaustion unless they have gone through parts of chronic illness or seizure disorders themselves. That sounds whiny I am sure, but this is beyond not getting a good nights sleep… for a few weeks straight. This truly makes you a zombie.
As soon as we got home I laid on the couch and closed my eyes, and my arms were flailing from the tics. Trying to go to bed, I had an anger episode with Dave, because I could not remember for the life of me if I took my seizure medications. He told me to just skip it and it would be no big deal. The seizures, the shaking, the sweating, the feeling like my head will explode is a big deal. There are many other consequences of not taking these types of medications and stopping cold turkey, but I have been lucky that I have never had any other issues during times I have forgotten to take my medications.
I did not want to risk feeling like that again, forgetting my meds. I yelled at him telling him I would rather overdose than feel like that again. Okay, I know that is far fetched and not true, but Lyme rage makes you just blurt things out.
I took my pills, again, or maybe not, and went to bed.
The following morning I hobbled around and hated how my body felt, as I didn’t get my “seizure sleep”. I talked to my Mom about my pain issues, the stress that no doctor has been able to help me yet, the previous night’s episode, everything and anything. Boom. Everything was out there in a full-on crying fest.
My Mom gave me a hug, which is one of those very rare things in my family (we love each other, we just aren’t verbal about it or “huggers”), and asked me if I wanted to go home. I declined as I really just wanted to do all of my work and go home.
As soon as I stepped into the office, there was information about a potential billing error and after finding the papers and checking them over and over, we found that it was THEIR mistake. Phew. I needed to not feel like a moron on top of how I was already feeling. Another silver lining.
I spent the rest of the day just trying to be okay and take some deep breaths. I know everything will be okay, I just wish it will come right now.
Today was a much better day, which has been wonderful. I never got my 15 hour “seizure sleep”, but I did get to sleep in today which I think helped tremendously. I got a lot of work done, and Dave and I even went to grab a bite to eat. Tonight we are having a little date night and will be watching movies. Simple and relaxing.
I have tomorrow off, which makes me ecstatic, as I want nothing more than to sit in my pajamas and waste the day doing absolutely nothing. I think I really need that right now. I am still going to be on my break from treatment next week, and I am really trying to figure out now if I am completely toxic still, or if my symptoms are all creeping back to me. I am not really sure, but at least today, even though I chose not to push it, was a much better day.