Energy and Fatigue

Let’s face it the seizures suck, but most of my battle has been with fatigue. It’s the first warning sign that a seizure could easily be triggered. I explain fatigue this way…if a lion started chasing me and I was tired, I could still run. If I were fatigued, even if a lion was chasing me I could not run. I started taking these supplements a couple weeks ago and I’ve noticed a big difference in my energy levels. I just worked a 7.5 hour day with a 15 min break, came home and did laundry, cooked dinner and ate a big meal…and I still have energy. I’m tired, but I’m not fatigued. I also started working at a health food store and I get discounts of food and lunch…so I’ve been eating super healthy, local, organic, raw foods. I think it’s making a difference. I did hit a “wall” a couple hours before my shift was up, the place was slammed and I thought, “uh oh, just breathe.” Perfect recipe for a seizure, but I pulled through. What? Crazy. Just like I would have before I got sick. 

Note: my app keeps crashing when I try to attach the photo of the supplements. They are called “Energize & Balance” Brenda Watson’s Vital Woman, Renew Life. I am familiar with all the ingredients except the last four. The ingredients are:

  • Yerba Mate
  • Korean Ginseng 
  • Ashwagandha root
  • Green Trea Extract
  • Rhidiola Root
  • Gotu Kola 
  • Cayenne
  • Bitter Orange extract
  • Banaba leaf
  • Quercetin
  • Horsetail
  • Protease 8,000 HUT
  • Protease, Acid Stable 30 SAPU
  • Amylase 1,000 DU
  • Lipase 150 FIP

No Visible Bruises: Domestic Violence and Traumatic Brain Injury

This is a very informative article about how abuse cases are handled in emergency rooms and with police. It’s normal to do a CT scan and watch for symptoms that include headaches and seizures from, say a sports related injury, but not common to do the same with a women who might come in who had been attacked and strangled.

“What researchers have learned from combat soldiers and football players and car-accident victims is only now making its way into the domestic-violence community: that the poor recall, the recanting, the changing details, along with other markers, like anxiety, hyper-vigilance, and headaches, can all be signs of Traumatic Brain Injury…“We’re really good now … if a kid comes in with an athletic injury, or someone’s been in a car accident, about working people up for post-concussive syndrome,” Campbell says. Such symptoms include vision and hearing problems, seizures, ringing ears, memory loss, headaches, and blacking out. “But somehow, we’re not as good with victims” of domestic violence, she says. “We’re not saying, ‘O.K., did you lose consciousness for those bruises? Have you had prior strangulations and/or head injuries?’ So we need to do a better job of applying that protocol to abused women.”

Read The Full Article Here

 

Addiction and Psychogenic Seizures

Ooo, interesting TED talk about addiction.
My yoga teacher has a very different approach to addiction, from the Yoga Sutras it talks about attachments and aversions. Everyone has them so everyone is kind of like, a little addict but we all have a different drug of choice. My drug of choice is to get sick, I just start seizing, it’s a way my body shuts down so I don’t have to feel pain. But I think addiction is an attachment to something usually in the future that we find sweet and comforting. Aversion is usually something from the past that we will do anything to not have to feel again, in extreme forms PTSD.
My yoga teacher says the key to severing attachments and aversions to past and future are staying compassionate to self and being extremely CURIOUS. You say, “isn’t it interesting that I ______________.” so interesting. And you make friends with that “negative” part of you, and you say, “Hello, I love you. Even if you are scared and make me seize.”

Fatigue and PNES

I have a hard time explaining my fatigue to family and friends. While I may not have a seizure every day, the fatigue is there everyday. I say, “It’s not like being tired, if I were just tired and a lion started chasing me, I could still jump up and run. When I am fatigued, I would not be able to jump up and run.”

It doesn’t leave much room for spontaneity. I have a new man in my life, and he called me recently at night and said, “come up to see me!” and I tried to explain that I‘d used up all my energy for the day. He didn’t understand and was hurt at first, until I gave him some reading material on PNES.

I liked this article. It’s about people with lupus, but I really resonated about how I have to schedule my days out. “People with lupus have to parcel out their daily activities and tasks because they often aren’t able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my ‘spoon theory’ with family and friends as they ask me how many spoons I have left…”

http://www.butyoudontlooksick.com/articles/pain_description/

Post EMDR

Just a quick update on the situation post EMDR. I finished the EMDR on March 5th. I think I was still “processing” a lot the few weeks after that because I had a few bad seizures the next week. At first I was really disappointed because I thought the therapy “didn’t work”. I changed my thinking on that because it DID radically shift my perception of myself from feeling worthless and fearful to feeling whole, supported, loved and WORTHY. My depression has never been better, and I feel very positive about life.

After that first week after the EMDR I had a nice three week streak with no seizures where I even had a yoga teacher training weekend without even one! This was a small miracle in my book. There were a few times I felt one coming but instead I would think, “why do I need to seize right now?” and the answer would come. Usually I was trying to avoid a difficult emotion. So instead I would let the emotion come out, have a good cry, and then feel better.

In April I had 5 seizures ranging from small to medium and currently I’ve only had one small one in the last 4 weeks. When I’ve gone this long without a seizure I begin to see positive effects trickle down into my body. I have less fatigue, more energy and I need less sleep. The one negative is I have more headaches. My chiropractor explained it this way. That my electrical pathways tend to get “mixed up” or “crossed” which causes the headaches and migraines. the seizures are like hitting reset on a computer, and resets all the electrical pathways. She is having me take a LOT of magnesium to see if this will help keep the electrical pathways from getting crossed in the first place. We will see.

I have had two bad “flashbacks”. That was kind of weird and super intense, but I didn’t seize so that’s a good thing. I think the flashbacks will become less intense over time.

Over all I am feeling more confident. So what if I have a little seizure once in a while, so long as I can live my life the way I want to.

Flashback

Trigger warning: graphic description of being triggered by abuse and choking.

This is the second flashback in a week. Both triggered by something I saw in a movie, that hit too close to home to what happened to me. But I haven’t had a seizure. The last flashback was almost a conscious choice. At one point my head started twitching to the left, which is a strong aura that tells me I am on the verge of seizing. Up until that point I had been trying to hold back the flood of overwhelming emotion that threaten to engulf me. So as a last ditch attempted to ward off the seizure, I stopped trying to hold back the flood and I let it over take me. So I didn’t have a seizure, but I was plunged into an emotional blackness.  I am writing this the morning after, I feel emotionally drained, but physically I am fine. If I had had a seizure instead, I would probably be emotionally AND physically drained.

I just happened to watch two movies within a week of each other what had strong content almost identical to my trauma? One movie was, I thought, a romantic comedy! Except in the movie they were grown women and I was a child. It’s a miracle I walked away.  I don’t believe in coincidence. The universe is testing me. It is showing me look, you are strong enough to walk through the fire. You can handle this. After all it’s only pain right? It’s only grief? It will lessen with time. These are emotions that have been trapped in my body for 23 years. I am honoring what I’ve survived by feeling what I was incapable of feeling or processing then. 

In the second paragraph you can see my memory is a little fractured as I remember my hands being in two different places.

It’s dark. I don’t know where I am, or when. I don’t care. All I care about is the pain. There is nothing else, just blackness and pain. I writhe in agony, micro movements inside of tended muscles, that keep my body balled in as small a shape as possible. The pain rips blackness through my heart, leaving an open wound that spreads to my stomach. I hear screaming, but it’s not me. I feel nauseated and want to throw up, I open my mouth but all that comes out is a broken cry, vocal vomit. Silence. Saliva slips past my open mouth that is held motionless in a soundless scream. Then I realize I’m not breathing. Breathe, Beka, breathe! The breath comes in ragged through my throat. I’m alive. I sob the breathe out, wailing voice. I’m alive. Breathe in again. I’m alive. The weeping sounds move with my breathing and have the rhythmic quality of a mewling babe. It sounds loud to me, but no one comes. After a time, I quiet down.

My hands are on tiles. I am in a strained, fetal position. I open my eyes. My vision of the tiles is framed by messy hair and the hood of a sweatshirt, pulled over my head. One hand grips the sweatshirt at my heart, the other arm is wrapped around my head, gripping the hood. That’s right, I’m in Angie’s bathroom. It doesn’t feel real. It’s 2015 and you’re in Angie’s bathroom.

5 minutes ago I was doing yoga on the bathroom floor. Feeling the cool floor against my hands, feeling my body tense into the postures. I flow into crow. Breathe in, breathe out. But I’m avoiding what I know is coming. My body begins to twitch. It’s coming either physically or emotionally. If I let it come out physically, I will have a seizure. And I will be sick from it for the next few days. The mentally healthier option is to, what I call, “what through the fire” let the emotions come. It’ll be over soon. I let my mind go. It is being called to the past, I stop holding it back. The present slips away. I curl into a ball of pain.

8 minutes ago I was splashing water on my face clinging to reality through tactile sensation.

10 minutes ago I was standing over the sink crying.

11 minutes ago I was sitting the on the toilet crying.

20 minutes ago I was watching a movie with two friends. There was a scenes where a woman is accidentally strangled to death my a man obsessed with her. He was just trying to keep her quiet, and keep her from screaming. He didn’t mean to kill her, he loved her. He’s manic. Like a panicking gorilla trying to handle a wounded sparrow. It was an accident. In the movie the woman dies. I say “he can’t give her CPR?” My friend says, “I think she is past saving.” I can’t believe she died.

I slowly push myself away from the tile, and stand up. I walk into the living room. I’m still somewhere else, I feel like I’m playing a video game, controlling my body remotely. I pick up my glass and walk into the kitchen and sit down on the floor, propped up by the cabinets. My friends both learn over from the couch to look at me. “Are you all right?” I shake my head no. “Seizure?” “Flashback.” “What can we do?” “Ask me questions.” They look puzzled for a minute then start asking about yoga. How long have I practiced? What’s my teachers name? What style? The answers come slow. I have to think about it. My brain is foggy and lost in time.

I don’t answer the last question. It doesn’t matter. Emotion rolls through my body, my stomach tenses and my face scrunches up as I grip my hair in my hands. Fat, hot tears roll down my face. My friends come over, sit with me on the floor and place a hand on either shoulder. For the most part, they let me cry. I’m grateful. I let myself cry. I look at my very dear friend through tears and snot and somehow get this seemingly important message to her, through my lips, “I didn’t die.” “What?” As if I am just realizing it myself. “I didn’t die. I should have died but I didn’t. I didn’t die.”

The crying is the catalyst that some how focuses time, space, soul and body. As I eventually stop crying I am relieved to see, reality has firmed up and I’m back, in my body, in Angie’s kitchen in 2015. I look at my friends and say, “Thanks for sitting on the floor with me.”