Push Yourself Harder! Go! Go! Go!

A lot of people are under the assumption that I can do a lot despite my disability; that getting things accomplished is a matter of mind over matter. This is not the case by any stretch of the imagination.

It's something I'm confused about, and need professional help with, but the more "willful" I get when trying something I'm having trouble with, the greater the problem I have conducting that task.

Two examples immediately jump to mind. The first is when I'm walking upstairs during an episode. If I'm having a hard time from the get-go moving my feet, intence focus and willfulness results it decreased ability to walk. It normally follows with a bad episode later, most likely a seizure. Another example is during my vocal tremors and paralysis, the harder I try and communicate vocally, the worse I get. 

Many people have told me that I just need to exercise. Take walks, do yoga, stretch, and push myself hard because it's the only way to get better. Although I can agree in exercise being good, I think pushing my body is counterproductive. (It certainly doesn't help that I don't know how not to take my body and push its limits) there are a few examples of this.

Grocery shopping is a great example. Shopping is physically exhausting. I start out fine, but as the putting progresses, I get worse. I have trouble walking more and more, and the tremors start on esrnest. By the time I get home I'm bad enough to have a full on seizure.

Christmas I caved into the pressure and I stretched, and I walked, and then I went shopping. I  started seizing in the middle of the parking lot. I couldn't even make it to the car.

The harder I try to work my body, the worse the seizures and movements get. They, in themselves, could be considered an intense workout that lasts 30 minutes to an hour. Imagine sprinting for that long while lifting weights. That's what it feels like. They strain my joints and muscles. To top it off my brain feels disconnected, fuzzy, and hurts after. Focus flies out the window for the next 24-48 hours. 

It is for this reason I feel as though I need to wait for a professional experianced In my disability to exercise to help me find the balance between exercise and pushing myself.

It's for this reason I'm really tired of people telling me I need to push myself harder to exercise. I've always enjoyed exercise, and I do agree I need it. Telling me I need it is redundant and annoying. I know my body. I'm learning what makes me worse. People who aren't medical professionals, and not me. People who don't understand what I am going through telling me to push harder frustrate the hell out of me. "No excuses," one said to me "just get it done. Everyday, get it done." 

I'm so bored of my house, of my phone, of video games. People seem to think I don't want to get out and exercise. I would kill to ride my bike. If I could I would be out helping Joe woodwork or cleaning my house. If I could I'd be walking to the places close by. I love being outside. I love being productive and doing things. I'm not being lazy. I'm trying not to get worse.

On my good days, I do try. I stretch, and I try to do more around the house. I get out of my chair. I go out and walk. Those days aren't as frequent as people think.  

But ranting aside, I do need to figure out a way to exercise when going up and down stairs is enough to cause a seizure sometimes. It's not easy, but I have dedicated some time to finding a solution. Soon I will hopefully have a personal trainer to help me too.

Don't Panic

In May I wrote what I thought a badass was. Rereading it today it nearly made me cry. In the past months I have been in and out of hospitals, hoping that I would wake up and my body would be my own again. It's not, and it won't be for a year or more. But that's the good news. I can go back to a mostly normal life eventually...there are many who are not so fortunate.

I should start over. I have been diagnosed with Conversion Disorder and Psycogynic Non-Epeleptic Seizures. Conversion Disorder  is caused when the paths in the part of the brain called the insula get mixed up. The insula controls emotions and movement. With CD the pathways of emotion and movement get crossed thus creating a conversion from emotion into uncontrollable movements or paraysis. This is normally triggered by a tramatic event, (Lord knows I've had my share of trama) or prolonged periods of stress, depression, and/or anxiety without proper coping mechanisms (seems like me). Psychogenic Non-Epeleptic Seizures are seizures that are caused by psychological stimuli, but don't produce brainwave patterns different than normal. Epileptic seizures affect the brain electrically producing unique brainwave patterns. They have different causes, but the results are the same. 

CD and PNES are not conscious conditions. I have no control. The only control I have is simply focus on breathing and Don't Panic (which is helpful advice for all situations). I have to repeat this because some people have a hard time understanding that I can not will myself out of this. I do not controll my symptoms. 

Because symptoms vary wildly among those with my condition, I'll be helpful and break down my symptoms. First, I'm tired all the time. I sleep 12 or more hours a day. I use the term sleep loosely. Most of my time in bed is spent dealing with mycolonic jerks (muscle twitches or spasms) or twitches in my left arm, leg, face, head, and torso. I also suffer from tremors ( shaking) in any of the aforementioned areas. This doesn't just happen when I try to sleep, but all the time. My joints feel the strain, and are a instantly in pain. Sometimes my joints and muscles hurt for no good reason. I can't concentrate on anything. Reading, something I once held as essentail as breathing, is a painful struggle. I can't remember half the words I've read. Writing is just as bad. My head is fuzzy and I can't focus. Although I can try to power through, the results are substandard at best. I get vocal tremors as well as paralysis. I scream, grunt, humm, and whimper for no reason. When I talk I have no control on inflection, tone, pitch, or volume. Sometimes I sing my words, sometimes I screach them. Sometime my voice leaves me altogether and I can't even whisper words. Walking is hard. My legs and hips are like spaghetti I have many symptoms. Headaches, nausea, and more, but those are the main ones.

(Silver lining: although I haven't lost much weight, I have lost 2 inches around my waist. I bet I can do so many sit-ups now!)

What this means is my life as I knew it is on hold as I've lost most of my Independance. I need help bathing. I often can't do stairs on my own, lifting heavy things is not even an option. I can't do anything but minor housework and it leaves me exhausted. I can't go to work or school. I legally can't drive. My hobbies: crafting, larping, and going out with friends is all not an option any more.

The good news is people do get better from this. Though I have yet to discover in my research how much better people can get, I know that they regain much of their functionality.

Normal therepies for CD and PNES are physical therapy, psychological therapy, anti depressants and anti anxiety meds, and help from the neurologist. Yoga and meditation have also proven effective therapies. 

Now, had I any insurance and an income this would all be easily achieved, but I had to give up both my job and school, which was the major part of my identity. Because I have no income I have lost my insurance. Getting disability and medicaid in my state is a lengthy process. One which I've started, but don't know when or if I will complete it. It could take years. This, however, is a story for another day. The point being I do not have money to throw at this disability. 

That being said, I have not remained useless. On top of trying to get on top of disability and medicaid, I've been looking into yoga teachers and meditation studios. I'm waiting for a reference for a neuropsychologist from my neurologist, and I'm learning ASL to communicate during those periods of vocal paralysis.

But even with all my efforts I am not the same person I was in May when I wrote what it is to be a badass, and the goals to become one. So I'm now going to rewrite these goals to something achievable for me in the coming year. As I do this, the blog will gain a new slant of dealing with disability in context of badassitude...or is that badassitude in context of my disability. Either way I'm going to keep trying. Fall seven times. Stand up eight.

Physical:

• They are fit, healthy, and strong

Eat more power foods. Do yoga. Go for walks. Don't push too hard. It's not a race. It's a period of rehabilitation.

• They have their own personal style

I have this one covered. I love footed pjs. Since I don't leave the house much, that is my style.

• They know how to fight

Every day is a fight to not give up. This is the best I can do for this one.

• They work with any physical impairments

Little did I know when I wrote this list just how drastic my imparements would become. 

I will not let this disability stop me from going out. I will not be embarrassed by things I can't controll.

• They are clean, and hygienic 

I will be getting a new toothbrush and a bench to use in the bathroom soon. My goal is to eventually be able to bathe daily, and brush my teeth 2x a day.

Intellectual:

• They have varied knowledge

I'm learning Sign Language and Spanish. I'm also learning more about my disability. I try to stay up on the research.

• They know of other badasses

I've become a part of a CD support group online. They are all badasses. I'm also researching other disabilities, and the people who have them because they are badasses

• They are well read

Putting this one off until I get better. The best I can do is read the articles on cd and hope I retain some of the information.

• They know a verity of etiquette and protocol and the time and place to use each

I need to write thank you notes. That's the only etiquette I care to deal with.

• They have an adventurous spirit

Adventuring is on hold till I'm better. The most adventurous I'll get is going out of the house for food with friends.

• They listen more or as much as they speak

Ha! Easy to do with my vocal tremors and paralysis.

• They are creative spirits

My blog will become my creativity. I'll try and write poetry, but focus on writing is hard (this took 4 days to write)

Social:

• They are leaders

As I become better versed in my disability, I can help people with the same problem find a way to cope. I can do this through this blog as well as my support group.

• They are independent

Find tools to aid in Independance. My Walker, and shower stool are among my first steps.

• They have an unusual hobby

All I have right now is video games. I need to look into producing a stream on twitch tv.

• They are keenly aware of the plight of their fellow man.

More so now than ever. 

• They are humanitarians

I will try to do one nice thing a month for a stranger.

• They have a willingness (not an outright desire) to defy conventions to stand up for those who cannot.

I might need to cut back on this. The stress causes me health problems. This one is put on hold till I feel better.

• They actually DO things and don't just talk about them.

When it comes to a cure, do more. Don't let the disability stand in the way of getting better.

Personal:

• They have their own moral code, which they strictly abide by.

After I figure out my triggers, restructure and write out my moral code.

• They stand up for themselves as they do others.

I don't face much adversity sitting at home. I try to avoid it on the Internet. It makes me worse. This is something to develop once I heal.

• They know their limits and attempt to overcome them.

Although I can't overcome my limits through willpower, I can try and get control of my life by following the treatments my doctor perscribes.

• They have a mindfulness and inner-peace.

Meditate daily. 

• They listen to their inner voice.

My inner voice got me into this mess. I need to listen to the professional voices for a while while my inner voice gets its shit together.

• They are okay with being alone.

I've learned this one quite well. There in nothing more isolating than a disability. I never thought I'd feel so isolated. I've grown okay with it. It's being with people now that's difficult. So I need to redefine my social self now that I have this disability.

• They are organized with their time and space

I should start by remembering what day of the week it is. Perhaps try and make a loose schedule to follow, body willing.

• They normally have a vice that may negate one or two of the above.

I've given up caffine, cigarettes, alcohol, and social outings. If I give up any more vices I will be unable to cope with my life.

My saving grace throughout all this has been humor and finding the good in the bad. I do not deal well with sympathy. It makes me angry. Jokes and optimism. That's what I like to see from people. It makes me feel like I'm still human.

I am willing to answer questions about my condition. What I truly don't like is suggestions. People who have not studied this condition, who do not understand it giving unsolicited advice. I understand that people are just trying to be helpful, but I'll ask when I need help.