MS Fatigue will make you PAY

This morning I'm using my cane around the house. I never use my cane around the house. Why? Because I live in a tiny house with one narrow hallway. I can usually balance myself  on walls and counters. Those aren't enough today. It's because MS fatigue is making me pay.

I had a good day yesterday. I walked my son to and from school. The extra walk for school, I was sure would hit me, but I did more than that. I also walked to find the owners of two lost dogs that wound up in my back yard. I even managed to find them! While I felt fine with all the walking and some housework, MS was keeping its own tally of my actions.

The alarm rang across the room this morning. I felt it right away. A feeling like my forehead was full of lead. I had to struggle to sit up, leaning on my bedside table. The alarm still demanded my attention. I gazed through the darkness toward the sound and wondered if I could develop telekinesis. Nope. Dear wife slept right through it and I envied her that. But then, she hasn't been feeling well lately. I had to use the bed for support as I shifted to the end and used the window sill to support me in standing. Next I had to manage two steps to the dresser without throwing myself on the floor. My knees rebelled the moment I went to stand, so this was like jumping a ravine.

Deep breath and shove off. And I made it. My knees wanted to buckle but I held on to the top of the dresser. I reached out and fumbled with the alarm clock. Finally silence. I stayed there for a couple of minutes, catching my breath from a small journey across a room that healthy people totally take for granted. Now I just had to make it 15 feet to the bed room door with nothing to support me. Oh, there's a set of plastic shelves, but I would just pull those over. If you could have seen me, you would have thought I shambled like a zombie from the Walking Dead. Still, I made it and leaned on the door or wall to take a micro-break before heading out to wake my son for school.

Mornings are always tough and off balance, but after a day of actual physical activity, it's always worse. MS, makes you pay for it. Sometimes for days. I'm glad it's Friday and everyone can sleep in tomorrow! Even then, when I get up, it's slow and easy or crash. My wife had to take kiddo to school as I can barely walk even with my coffee in me. But then, life doesn't stop for MS. My kitchen is a disaster area and I'm wearing my last pair of clean underwear. I will have to manage at least a couple of things today.

That's what Multiple Sclerosis does to you. It gives you a day of doing things really well, and then relapses you into uselessness for anywhere up to several days. You don't just get tired for the night, your body malfunctions for a lot longer in response to physical fatigue. That's what it's like. Try to imagine if you can. As food for thought, I leave you with a little ditty by Jethro Tull:

Lyrics:

My first and last time with you
and we had some fun.
wenT walking through the trees, yeah!
And then I kissed you once.
Oh I want to see you soon
but I wonder how.
It was a new day yesterday
but it's an old day now.

Spent a long time looking
for a game to play.
My luck should be so bad now
to turn out this way.
Oh I had to leave today
just when I thought I'd found you.
It was a new day yesterday
But it's an old day now.

Knowing yourself: warning of sensory overload

Stock photos

As promised, I'm going to dig into more of how a sensory/stress overload actually feels and how I work to stay ahead of them.

I mentioned in my last post that there is a prickly sensation in the back of my neck that is one warning. Another, if I'm paying attention to myself, is that I become less of a generally pleasant person to be around. I may experience feelings of anger that have no apparent trigger. I don't like feeling this way, so I've learned to recognize it most times. If I'm sick, I may need help seeing it. But then, who is pleasant when they're sick?

Trigger factors:

Stress: If a lot of things are a stressing me out, I have to be more mindful.

Heat: Thanks to my MS, heat is a threat. I can't be out in direct high  heat for a very long time. It wears me down fast and leads to other triggers.

Exhaustion: The more tired I am the more at risk I am. It's important to pace myself. But I am a stubborn man at times. It's not easy losing your independence to MS or any other condition.

Signs:

Snappy disposition: If I'm getting cranky it's a sign.

Dizziness: Vertigo is not my friend. It's a sign that I'm overloaded.

Tilting vision: My view actually tilts on a weird slant to the right and happens with bursts of dizziness.

Extra tremors: The more I'm having, the more careful I need to be, but I have tremors for multiple reasons, so I have to watch for tremors that come with the rest of the issues here.

Rapid breathing: Also comes with an accelerated pulse rate that I can actually feel in my neck.

Loss of coordination: Unable to grasp things properly, dropping things, and extra stumbling beyond what I normally have with MS.

How it feels. I get hot. Really hot. Hot to the touch even. I lose cognitive function and get confused. Nothing I see, feel or hear seems right or makes sense. Fight or flight is being triggered with no physical threat apparent. My only hope is to get somewhere dark and cool.

I use a fan for two purposes. One is temperature and the other is to dull my other senses, like my crazy hearing. White noise from a fan is very helpful. I use the same to sleep at night.

People who suffer from sensory overload have a tough job/responsibility in controlling it before it controls them. In its full grip, it's a blind rage like no other where nothing makes any cognitive sense any more. Everything is closing in on you. Everything; every color, every sound, every sensation on your skin, every light, EVERYTHING.

It takes years to decades to come close to controlling it completely. Some are luckier with it than others, of course. Many never completely control it.

What seems to be a problem out in the public still today, is that this is a real medical condition. It really affects people. Once in a while, I get the chance to educate someone. We can only hope to keep educating and getting the news out that these situations are real.

If you are suffering from sensory disorders, it falls to you to have a home protocol where you can escape and destress.

If your child has a sensory disorder, it falls to you to teach your child how to develop the same home protocols. Fortunately, there are tons of tip sites and assistance growing on the internet every day. I posted links to a couple of sites on my last entry.

Remember, you are not alone. It's real. And there are more of us out there, than most people realize.

How did I get here?

At times I find myself reflecting on what I survived and how I got here. Memories don't like to stay away, but then sometimes it's important to remember. It's important to remember that I survived this long for a reason. Bigger and badder events have tried to take me down. They failed. Why should current events be any different?

Not that anything really bad is happening right now. I've had a few difficulties in recent days and struggling with MS has been nothing less than frustrating.

Yesterday I wanted to bag up some of the leaves that have been in my yard for months. I managed to pull off a bag and a half before nearly reaching collapse stage. I was furious; mostly at myself. How weak it seems that I can't bag some stupid leaves. Yes, they were wet and rotting, therefore heavier. Yes, it was 84 degrees outside and MS hates heat. But still, I wanted the work done. I still want the work done. Oh, I did also use the push mower to do the front yard (by push I mean no engine) which is a staircase of tree roots. I probably should have stopped there.

I remembered that I used to be a soldier. I used to do 50 pushups at a time. I can do 20 now, but it wipes me out for hours. I went to basic training in South Carolina where we marched in 90+ degree heat. Now I can hardly tolerate just standing in 90 degree heat.

But I'm still breathing and functioning. I'm still doing a lot of things that defy the odds. I've lived my life doing this. I've been put down and kicked while down and still got back up. So maybe I need a check list that reminds me?

Abusive alcoholic/drug addict stepmother: Survived.
Severe and violent bullying through school years: Survived
Run away from home and become a street urchin child: Survived
30 years of chaos and loss because I didn't know I had Asperger's: Survived

All that and managed to stay away from drugs, alcohol and crime. So I have a lot to be thankful and for and a lot that didn't take me down in the first place.

I know I can only hold back MS so much. I know I can only keep doing my artwork for so long. I just need to remember how I got here and what's important today. Bit by bit and piece by piece is how I have to do things. That's just the reality of it.

So maybe sometimes, the musings over the past can reflect on the present. It all depends on how I utilize those memories. Or something like that.

Throw the spaghetti!

It's been a tough MS week over here. When I make spaghetti, I break the strands in half. Normally that's no problem for me, but last night I lost my grip and threw them all over the stove top. A couple caught fire and I went into panic mode. This triggered the beginning of a sensory overload because of the sudden stress and panic. Normally such an accident would be hilarious, but I wasn't seeing that at the time. My wife came to my rescue and helped me pick up all the noodles like a game of pickup sticks. Dinner wasn't ruined and we got on fine. If it weren't for a stark hatred of MS, I might of felt like laughing later, because it had to be just a little bit funny. I have these days once in a while where I go from dropping something, to immediately tripping over it, than standing up and bumping my head on a cabinet door. If anyone saw me, they wouldn't be able to help themselves in laughing. I wouldn't be feeling it though.

Several days have been rocky like this so far. Today, not so bad. I'm inking new artwork and pushing forward in my projects.

That's just how it works. It  grabs you and throws you down and you struggle to get up for a day or few. You utter some choice words as you spill and drop things or throw them all over the room because you flinched weird. It's hard to see the slapstick comedy of such accidents when they feel more like an insult from your medical condition. But there it is.

Tough MS days also come hand in hand with depression. Your enthusiasm is about as active as a dead fish. That's been mine the past couple of days. I recognize it too. I know it's happening and I'm open to admit it during the course. And I feel bad because it rubs off on others and makes the day sad for everyone. So I have an internal wrestling match, trying to cough up a chuckle or two. Sometimes it works, but it feels fake to me. And it is.

What can you do when you are having a low MS time? Not much. Ride it out. Get an extra nap in. Take a walk if you can. Watch funny movies. All the basic tools against depression as you wait for the MS tide to go back out again. When you do feel better, you best take advantage of it. Try to do those projects that you've had to put off for days on end.

Finally, you have to remember that it's not your fault. You have MS and it's a rotten demon to live with. You didn't ask for it or invite to live with you. It pushed its way through the door on its own. Keep your chin up and keep fighting the good fight.

Multiple Sclerosis: What you don't see

I saw this image today on Facebook from MSstation and knew what I would be writing about today. First, let me tell you that MSstation is an educational group page on living with MS. If you live with MS and you are on Facebook, check them out. On this infographic there is a list of what we live with in MS.

Numbness and Tingling sensations are both listed and they go hand in hand. I can't sit in one position for long or my legs will give me hell. It feels like circulatory problems. According to tests, my circulation is fine. It's the MS.

Tinnitus: ringing in the ears. I don't get this one as often, but I have it about once a month.

Trigeminal Neuralgia: There's a fun one to say. It's a nerve condition that causes shooting pains in the face. I get what feels like cramps around my ears and into my jaw.

Speech and Swallowing difficulties: Oh yes. I bite myself while trying to talk and mess up words into gibberish. I also have esophageal spasms throughout the day. They make it look like I'm choking, but I'm not. They can cause actual choking if I'm trying to eat.

Optic Neuritis-Diplopia and Nystagmus: In order they are inflammation of the optic nerve, double vision and involuntary eye movements. My vision used to be awesome and it still kind of is; except when I can't focus my vision. Because this happen intermittently, glasses won't help. So my vision can come and go. May have my regular awesome vision one day, blurry the next.

Depression. Who wouldn't get depressed? I've dealt with depression all my life. This explains a lot.

Bladder Control. I definitely have to go more than I used to. I also have a stretched bladder due to my career before being disabled. Basically, I was too busy with emergencies to stop for bathroom breaks. But that's another story.

Tremors. The bane of an artist. My handwriting was never good, but it's horrid now. I used to able to write letters, but now they must be typed. I have to make a lot of adjustments for my artwork. The finer the detail I try to draw, the more it will just be a wavy mess.

Restless Leg Syndrome. My legs will kick or just shudder. Tough MS days always make this worse.

Insomnia. I definitely get sleepless nights. This can be made worse by fatigue that takes me down during the day and messes up my sleep cycle.

Nocturia. Overnight waking up to urinate. Like sleep problems weren't already an issue.

Constipation. Nuff said.

The MS 'hug'. It feels like you have a vice around your ribs and your being crushed. Mostly I just get a cramp on one side of my ribs, but it's pretty painful.

Balance issues/stumbles/trips/falls: There's a T-shirt out there that says: I'm not drunk, I have MS. Get the idea?

Dizziness/vertigo: This can be triggered by nearly anything. Sitting up, standing up, bending over, kneeling, or a jolt of physical exertion. It's hard hitting and the landscape looks and feels like it's tilting sideways for me.

Headaches and migraines. Hand in hand with everything else that happens at head level.

Cognitive Issues. I have trouble finding words and get confused over nothing at times.

Debilitating fatigue. Anything can exhaust me for no visible reason. Basic household chores have to be done in parts to make it through my day. Fatigue makes all the other problems act up worse.

A couple I'm adding:

Joint failure: Particularly in my knees. It's like having someone tap you behind them to make you dip. I've fallen a couple of times as a result. I also drop things or miss when I reach for something and smash my hand into something.

Susceptible to temperature and barometric pressure: Moderate temps are fine. Heat will sap energy fast and cold just makes everything tighten up.

Every single thing your body does is dependent on your nervous system. Without your nerves, your heart will not beat, your lungs will not breathe, your organs will not process and ultimately you will die. That's why it's important to slow the process of MS any way possible. I have injections for this and there are new medications being worked on even now.

So, for all you see on the surface, there is a war going on underneath.

How Multiple Sclerosis affects my artwork

Recently a very cool friend of mine received the honor of an article in the Daily Light paper about how MS affected his music and ability to play. You can check it out HERE. I am so proud of my friend, Chris and all he's accomplished on explaining MS to people and raising awareness. It's an inspiration to me.

Now I'd like to share an online quote directed at me some time back.

"I don't think your condition is an excuse for bad artwork."

As many of you know, I'm the creator/writer/artist for my own universe of characters called, Galaxy Zento. To suggest my artwork is perfect would be a lie. I'm not perfect and I do my best with what I have left. The person who made that comment had no idea what they were talking about. So let me explain what it takes for an artist to put out awesome artwork.

Knowledge of form, good hand eye coordination and cognitive ability to transfer and translate from mind to paper. Seems simple right? Now lets look at that MS does to a person.

It destroys your freaking nerves. So hand coordination is shaky at best. If you look close enough at my work, you will notice that all my lines are wavy. All of them. Circle? Wavy circle. Oval? Wavy oval. Arms? Musculature? All with little waves everywhere. I can correct some on digital but even there I have to do what my messed up system allows if I ever want anyone to see it (this year).

Cognitive function is a mess. It's like trying to strain your thoughts through a colander or sifting mechanism and then make sense of the resulting mess. What I try to see in my mind and translate, is a fog. So I'm literally making up details as I go. Sometimes I can see it in my head really well. Other times, I can't see my character's faces. Try to figure THAT out. I get basic forms and basic shapes, then I have to muddle my through to make them work.

Now I tell myself that I simply have to own my own style and never give up. But it's not always that easy. There's so much of the story to tell and I don't know how much time I have to tell it. I'm racing against a clock of unknown time. It's headed for a point that I won't be able to draw a stick figure.

If you follow the link about and go through the albums, you can see differences in the pictures that show days that my poor head wasn't quite up to the job at hand. Sometimes I come up with good looking stuff, sometimes I don't and I have a lot of  trouble fixing it.

"Just find an artist." I do have someone on board, but please don't say this to me. I don't have up front funds and it dismisses the fact that this is a huge piece of myself that's fading decades before it should.

So, as you view the artwork of Galaxy Zento, know that every success is dedicated to others like myself (especially youth). Someday, I may have artists who put in because they believe in my reasons and can fall in love with the characters, but until then (and even after) I will continue this fight.

Bringing the blog back to life

It's time to bring back Wildeman's Words! I'm going to be doing some very special works here. It will be a variation of the things I work with and causes I believe in. It's all going to be interesting without a doubt, so I hope you'll be watching.

About those causes. Just what are they? Well, if this is your first time on this blog and you don't really know me, I'm DJ Wilde (author, artist). I have Asperger's Syndrome (no I don't care if its not in thediagnosis manual anymore) Multiple Sclerosis, and a Traumatic Brain Injury. Life is a challenge on the best of days, but I press on and that's an important message I want to convey. Now, I am also the parent of a child with autism (he's 12 as I write this). I grew up without any of the supports you see today and without diagnosis. So those things are extremely important to me, especially for my son. I also want to see more of our autistic youth get the support they need. When someone with autism does something awesome, you may well find it here. Support news? Yep. And every once in a while a rant on some wrongdoing to someone.

As an independent author and artist kicking off his own universe, I'm bound to mention that here. But there's also Galaxy Zento, the blog to consider. I'll be doing articles on independent comic or fantasy artists. People who's work I admire and want to share. Being and independent isn't easy. It's hard to get word out. I'm willing to give some word. Independent authors? Them too! Especially if they have anything to do with the causes above.

So there will be a cool mix coming in the next few days. Tune in!

Chris Cox Rox on Multiple Sclerosis and YOU can help!

I was just about to go and work on an art piece I have scheduled when I saw that an online friend needs a hand. This isn't just any online friend by the way. This is Chris Cox.

What? You want to know who that is? He's the lead singer of Mudd Farm, but that's not all. Oh, you think this is just some Youtube band going for glory? You're wrong there, buddy. He's done been there and back again. He's been rocking the stage since before 1993.






He was even on MTV!



So he's not some wannabe or just some ranter online. He's the real deal. And he's gotten the moral support of people every bit as real if not moreso...

Yeah, Dee Snyder as in Twisted Sister fame from the 80's. Don't tell me you don't know who that is! Oh fine;



If that's still not enough to convince you, check out his page where he has tons of supporters doing this:

Now that's moral support!

So what does Chris have to do with MS? Well, in 2006 he was diagnosed with this nerve eating disease. I know how he feels because I have it too. Since then, well, check THIS.

Chris wants to make a documentary about living with MS to educate others. He's currently running a Kickstarter campaign to raise the needed funding. Now I just wish I had the capital to help him out like deserved, but I don't. So I'm doing this. You may further as why I'm kickin this blog article off the way I am. Well let me tell you about something else, something I stand against.

Seems like some people on Facebook still have twitchy spam fingers. Rather than drop someone from their page and just walk away, they have to call down the FB Police to have his freedom of speech messed with. So I'm posting this because I want you to see that Chris Cox is totally for real.

He could be doing a lot worse than something as positive as this. He's doing something right and I'm standing up for it right here and now. YOU can help. Tell people about his rocking Kickstarter campaign or toss a few bucks in yourself. You'll be supporting an education that really does ROCK.

Living with MS is no picnic and way too many people don't understand. They prove they're lack of understanding by telling us to go be mushroom people, sitting in the corner, sucking up our benefits; just to get out of their way. They prove this by then saying, "Hey you don't LOOK sick"! The misjudgment and stigma are hurtful and degrading. It's time for it to stop. Here's another tidbit for those of you who just want people like Chris and me to shut up; by today's statistics you have a whopping 50% chance of being just as disabled as me by my age. I'm 43 as I write this, so good luck to you.

And it's not just MS that we need to show some respect to, there's more that wind up leading to Parkinson's, Alzheimer's, and then there's Autism, and way more. The numbers are growing, and it's time to start caring.

So rock with Chris Cox and be a hero. Help spread the word. It's not spam, it's a worthwhile project and way better than just sitting around waiting to die. What would you do? Never give up, people, never give up. Now come on and let's get the word around.

With a special message for autism

It's finally available; my second book. It's a collection of 12 short stories that will make you laugh, gasp and wonder. While I need to advertise my book, this time there is something special I've added.

At the end of this book is a special note from the Author (me) regarding living with Autism, Aspergers, MS and other conditions. We are such kin in our comparable medical issues that it felt right to be inclusive.

It means a lot to me to inspire others, especially our youth, with my work. I know, not everyone can do the same things, but we can all do something to enrich ourselves. As I've said before, I'm not talking about going out and getting some back breaking job when you may be unable to serve on an employed position. I'm talking about doing something just because you enjoy it and it's good for you.

I grew up without anyone knowing that I had/have Asperger's Syndrome and Bipolar disorder (yes you can have both). In my age and demographics it wasn't even a consideration. So I was never tested for it. I was only tested for my IQ. Being ahead on IQ and considered a borderline child genius (yes, I was) didn't help with the severe bullying in Jr. High. I went home bloody at least twice a week. I had to hide that too. I had to clean myself up somewhere on the two mile walk home from school so my Step-Mother wouldn't know. Why? Because she abused me too. I fought back a couple of times and wound up with police at my door and more trouble than it was worth.

My Stepmother only knew how to scream and yell while downing one beer after another. I could tell you more about her daily manner, but I'm afraid it would trigger some of you. Suffice to say, I wound up having my own PTSD from the things she did.

So I left home at age 14, wound up in another state and then out of school at 10th grade. I had to join Job Corps and get my GED to make my way forward in life.

Despite all these things, I carried myself forward. I had jobs and relationships. I got married (thought not always for the right reasons) and now have four wonderful kids. Let me just say that those kids have made anything that went bad in my past relationships worth it 100x over.

Now, I get to add Multiple Sclerosis to the mix. My knees don't want to hold me up most days so I have to us a four pod cane. I get dizzy spells and exhaustion at ridiculous times and often without getting much done. I have to pace myself around my household chores and I'm losing the coordination in my hands (as well as the rest of my body). I walk into freaking walls, people. Not fun.

But now I write and do my illustrations (in spite of my hands) and refuse to give up. My son needs to know, that just because Dad is on a cane, doens't mean he's helpless or can't do anything. On top of that, I want others to know that they can do things too.  I make my heroes and write my stories that have been in my head since childhood. But now I do them with a new purpose. And I'm not going to stop.

If you or your kids wonder what they can become because of their conditions and difficulties, please share my story with them. And I'm not the only one out there who can do this either.

And you don't have to be some prodigy that gets famous, okay? Do it because it enriches you and makes you feel the power of accomplishment. If that's reading a hundred books a year, do it. Shooting baskets and learning sports, do it. Just do it.

I plan on sharing this often, so I apologize in advance for anyone that offends. For the rest of what I do, visit GalaxyZento.Blogspot.com or my Facebook page under the same name. Free reading for GZ Legends and lots of illustrations that I do, no matter what my head and  hands are doing to me. I know there are a lot of you out there who can relate.

So, what are you doing to do?

You will always be criticized

In an effort to make a positive from a negative; lemonade from lemons, I write this. Recently I posted this message for my Galaxy Zento page of heroes that I write about and draw.

With your help and sharing, my project to inspire others with my Galaxy Zento project has been growing, slowly, but growing. I know it can grow more. The simple truth is, the more people who click like on Galaxy Zento, the more people it will reach. The more who share it with its message the more likely that will happen. I have a modest goal that I would like to reach by the end of next month. I would like the page to reach 1000 "likes". Can you help? Do you know anyone who loves original content, characters, and stories? How about practicing artists? Anyone who just wants to practice their art skills and get posted as a guest artist? As I'm preparing to post GZ Legends 50 (a milestone post!) I want to spread the word. I want people to know that you can still do what you love, or find something to love doing even with disabilities. You can still grow as a person. You can still inspire others. I will always support autism education and projects that help people grow as human beings. You can help me make this grow. What do you say folks? Its not enough that I share to you, when you share it reaches your people. So, give it a twitter and give it a share. Let others know that a guy with multiple conditions is striving to inspire. This week, I go to see my second oldest daughter graduate. So there will be some delays on other postings. A great time for your help. Love you all! Be blessed and inspired.


I also posted this:


So I posted a very special message on my wall. You know, growing up with Asperger's or any similar condition is not easy. I grew up with no support system because no one knew what was up with me. They didn't know what was "wrong" with me. Now that I grew up through that, I want to use any success I have to inspire others (especially my son as most you know, has Asperger's/autism). I want to give back for every step forward I make. So I hope you'll visit my page and check out what I'm doing. My goal is to get my project page Galaxy Zento and its heroes up to 1000 likes in the next month. You can have a livable life. You can do great things. It will get better. Let the inspiration carry on.

On the same day that I posted that second message I was accused of doing what I do, solely for personal gain. 

On that I will say that if personal gain was all I wanted, you wouldn't be able to go to the Galaxy Zento blogspot and read my stories for free (now up to part 49 of an ongoing story). I wouldn't bother scheduling to talk to college classes about what it's like to grow up with or have autism. I wouldn't bother. I wouldn't make videos, I wouldn't do anything but say "buy my book". That would be it and that would be all. No, I want all my success to do something more. Those who don't believe me will just have to wait and see. 

As you go forward in life, this is something you will have to remember to. Your best efforts, best intentions, and anything else you do will always be misunderstood or criticized by someone. Still, you must never give up. You must go on in spite of these people. Shut them out. One of these people will never have to be bothered by my posts again, because I blocked them. You don't have to block people, unless they are harassing you. But, you don't let them steer your life and ambitions. Don't let them mess with your goals because they don't understand you.

Look to history and see how many famous innovators ignored the criticisms and achieved great things for the world around them. 

Martin Luther King Jr. was told he couldn't do it.
Ghandi was told he couldn't do it.
Even Mother Theresa was told she couldn't do it. (Yes I know I'm not any of these people)

What do they have in common? None of them listened to the naysayers. Don't you listen to them either.

So what if my way involves selling some low cost books? Doesn't everyone have to do something in this world? Would I set a better example from my couch? 

I have yet to complain about my book sales, and I won't. The book is there and I would be stupid not to advertise it. I would be stupid not to try and take myself further in life. What kind of example would I set for my message if I did nothing? Writing a book was a great accomplishment for me and I refuse to let anyone come throw a big soggy blanket on it because I want to inspire others with my work. 

Also, I  never claimed to be some non-profit benefactor in this. I did say that I want to give back and that will continue to be my plan ever forward. As I said, those who don't believe me will just have to wait and see. They don't know me and their assumptions cast a shadow on them more than me.  That is how you must move forward too. 

So, want to write a book? Do it!
Want to ride a bike? Do it!
Want to take up golf? Do it!
Want to paint pictures? Do it!
Want to make videos about taking sledgehammers to wrecked cars? Well, yeah, do it!

And, if you do get paid for it, what would be wrong with that? I would call you lucky! Then, show others your success, especially if you have a disability! Let your accomplishment inspire others to live too! That's my goal!

Now.... what are you going to do?

Losing my coordination

This has been a morning of painful reminders. It feels like my entire  home conspires to beat me senseless. That's not true of course, but when you miss doorways for door frames, walk into walls, open cupboards and crack your knees on everything in sight, well, you get the idea. I feel like a bad comedy skit, and it's a painful one. If there's a way for me to have an accident, I 'll sure find it.

Half our laundry work is done in the kitchen, the washing that is. The dryer is out in our garage storage. It's just the way things are built. Anyway, with the help of a nice tile floor, I managed to step into an empty laundry basket that slid away with my foot. I'm not built to do the splits, let me tell you. That really hurt. It also hurt when I shut the bedroom door on myself.

This is one of the realities of an autoimmune disease/disorder (blast it, I had to stop typing for a few minutes because I couldn't get my fingers to type that last word!). It's more than a little frustrating.

Disorders and diseases that attack your nervous system, like autism and various auto immune disorders, destroy your coordination and balance. Autism isn't known for being progressive, but you change as you get older, believe that.

Children with autism have been found to have motor difficulties. It's why there are so many cases of handwriting problems (for one example). Delays in fine motor skills are not uncommon.

People with MS report problems with dropping things and severe coordination difficulties. It gets worse for any motor skills you don't use. One person who suffers the condition explained to me that basically, "if you don't use it, you lose it". So staying active as much as your condition will allow is important.

Things that help are exercise and motorskill practices. You can check with therapists for ideas on what you can safely do. It's amazing how the simple act of picking something up in your hand can be taken for granted, until you can't do it anymore.

There are no simple solutions, though well meaning folk will offer them.
"Just use a ruler for your straight lines, Dave."
Trust me, I do, but when neither of your hands will hold still, the ruler won't either.

I know I'm not the only one, that's why I'm sharing this today. Today has just been tougher than most. I know there are many people out there who suffer this and feel the same way.

Learning auto immune diseases

This new journey I've been on has given me a lot of reason to research and learn. I have gained a whole new insight to auto-immune diseases and what they do.

An auto-immune disease is a condition where your immune system starts to attack your organs or nervous system in various ways. Like with Autism, there is a wide spectrum of these conditions and they can be very hard to pin down and diagnose. This causes a lot of stress between doctors and patients. Some patients complain that doctors think it's all imagination.

Thanks to two MRI's we know this isn't my imagination, but that's the only comfort we have. Blood tests and a lumbar puncture haven't proven helpful. My research has shown me that it can take years for them to show up there depending on which one I'm dealing with.

I recently learned that some people with auto-immune disorders have to watch out for the common cold. I had thought this was only a problem for immune-suppressed conditions, but I've learned differently.

First, when your immune system is attacking all your organs, it compromises itself and ability to handle real threats. Now, this isn't a problem for me in that way. Instead I learned something else. A cold can still take me out.

I have a very strong and over-reacting immune system. Imagine someone driving a nail with a wrecking ball. Sure, nail goes but so does the building. That's my immune system. Imagine how much energy that drains out of you. Recently our household was down with the flu. Both wife and child had their upchuck moments but not me.  I barely have a cough, but I lost all energy and couldn't get anything done. I was down for a whole day.

So, having a super strong immune system can work against you. I'm still trying to learn what all I can do to keep myself going. Looks like more trial and error.

My neuro update

So, yesterday I made the hundred mile drive to Shreveport to see a neurologist about my MRI. It was a good visit. She listened to me, answered my questions, and formed a diagnosis plan.

We did a big blood draw for an auto-immune panel. This way, if it's not MS, we can see if it might be one of the other auto-immune diseases. It's not easy to diagnose these on just an MRI after all.

I will be scheduled for a new MRI for after the holiday to see if anything has changed. If nothing has changed, it's not likely MS. If it has changed, then it may be MS. If it's not conclusive a lumbar puncture is the next step.

I really felt good about this trip. I wasn't treated like it was all in my head or that I was a waste of time. I didn't feel like I was the next project on the conveyor belt. That alone was enough to make me feel like this trip was a step forward. So, the fact that this takes time and multiple tests is easier to accept.

My neurological journey

Conditions are deteriorating. Things that remind me of that happen more frequently now. In the beginning no one could find any proof of the damage in my brain. I've researched websites to include places like the Mayo clinic and found that it's not easy to find the proof sought. It has to be drastic to show up on MRI's without a dye contrast. I was unlucky enough to have doctors who wouldn't run an MRI with contrast unless I was flailing on the floor. That compounded getting diagnosis accurately.

I even saw two neurologists and both of them discounted and dismissed me. The second literally kicked me out of his office only because I have bipolar disorder. He wouldn't hear anything I had to say.

In the mean time, I've consistently and slowly been losing my balance. I wear out faster than ever, despite exercise. I have vertigo over simple and slight movements of my body or head. And my cranial nerves hate it when I try to lift something heavy, even if I'm physically strong enough to. I faint or have a fainting spell. Coughing is dangerous, it will knock me out. Sneezing causes nerves in my neck and shoulders to react and stun me. It's called a brachial stun, used by police officers to subdue unruly suspects. And the contused nerves in my forehead hurt a lot and often. All of this seems to go hand in hand with my sensory disorder and make it worse too. It's all be gradual, but I can definitely tell the difference.

Maybe my problem was how the doctors in the areas I lived did things. The first time I spoke about this to a doctor here in Louisiana he set me up with a contrasted MRI. It came back as quote: "unusual". To that I say THANK YOU, it proves I'm not crazy or imagining things. I've talked to lots of people who have gone through this in trying to track their health and take care of themselves. It's a diminishing and dehumanizing feeling when doctors won't listen to you. Then it's a Godsend when they do. Maybe, now that I have an updated MRI that actually shows something, I'll have better luck with the new neurologist next month. Yeah that's as soon as I can get in and I have to drive fifty miles too.

In the mean time, my short term memory is crud. My coordination is worse. Last night, I was having a bowl of chili. I went to get a spoonful and slammed my hand into the steaming hot mixture instead. It dumped on my lap and scalded my hand. I can't tell you how much that messes with my head when that kind of thing happens. Two days before that, I spent an entire day in what felt like a narcotic fog. No, I hadn't taken anything stronger than tylenol. I was useless for the whole day. I didn't hit my head, or get sick. I was just fogged beyond belief. I've had to catch myself on doorways, walls, and getting up out of a chair is treacherous.

As these things happen, I find myself saying "what the hell?" I'm only 41. Didn't I have enough to deal with in my autism and bipolar? Or maybe it's something more depreciating than bipolar ever was. What if the bipolar was MS all along? I don't know, but sure hope to find answers soon.

I do everything in short intervals, even this blog. It sits on my screen as I stop and rest my hands in between. It's a struggle I won't give up, even if I eventually have to have someone else type it. If I can get someone (ha ha on that). Well, I will post on my journey more as it happens. Till then, be well.

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Autism and stress

Question posed: What makes it so easy for people with autism to freak out?

On the surface, some may be offended at such a question. It's really a good opportunity to educate on what it can be like to live with autism or several other disorders that aren't plain to the naked eye. So, rather than get offended, I suggest sharing what stress levels are like for disorders of this kind.

First let's define stress in the psychological sense. First you may be interested to know that stress is a very subjective word and everyone has their own personal view of its definition. For the most part just about everyone understands that something irritating you is stressful and causes you "stress". There are positive and negative forms of stress as well. Everyone handles stress at least a little bit differently.

Another thing most people can agree on is that stress has its limits. You can only take so much of a "stressor" before you need to take a break. A good example of this is to think of exercise. Imagine picking up a five pound weight and bending your arm while lifting it. When you lift the weight you put stress on the muscles in your arm. The first time you lift it, may provide little stress. If you lift it a few more times, your arm may begin to get tired. The more you repeat the process of lifting and lowering the weight, the more difficult it becomes. This shows the limit of stress on those muscles. Eventually you will reach what is called "muscle failure" and you will have to put the weight down and let your arm rest.

In mental stress you deal with a similar style of limits, but different kinds of stressors. For example, think of your monthly bills. If you are having financial trouble or just on limited income, your monthly bills (electricity, phone, rent) may be a source of negative stress for you. Fear is another stressor, whether fear of losing your home, having your phone turned off. Fear may be of something real or imaginary.

One more thing that we can usually agree on is that, with enough stress applied, most things will break down in some fashion. That breakdown point is called a "stress limit". How many ways can you see stress limits in your day to day life?

Here's an idea; when you sit down to your next meal, pay attention to how you feel while you are eating. When you feel hungry, that is a stress. So, you eat your dinner and towards the end of it you start to feel full. Feeling full is a stress limit on your stomach. Whenever you breach a stress limit there is always a consequence. Overeating will make you feel bloated or sick, for example.

Now, lets consider another area of stressors. These are stressors that you face every day. They likely mean nothing to you at basic levels if you don't have a disorder. Environmental stressors, like odors, temperature, sounds, weather, traffic, and even other people bombard you every day. Your typical person learns to filter most of these out as they go about their daily routines. Even these stressors can be too much for you though. When you are tired and trying to sleep at night, you don't want to listen to your neighbors stereo rattling your windows.

So what are your stress limits? Well, consider your stress level through the day, like a weight scale. Take into account that all forms of stress add toward your personal limit. If you get enough rest and are of good health, you should start out your day with low stress and energy to move forward with. As you go through your day and handle work and various things that pop up in life, these will add in their own way. By the end of the day( which is different for everyone) you feel tired and need to rest for your next day. This can also change based on how much stress piles onto you in a short amount of time. That is the clincher.

With disorders like autism, PTSD, MS, Bipolar and various sensory issues, the limits to stress are not necessarily less. Instead, the senses and mental limits take on their full limit faster than with other people. In autism, the brain may not filter out all the stressors like typical person can do. Thanks to that, if you have autism, your stress limit in your senses may be maxed out before you even get your day started.

Having senses too high or low in sensitivity creates high demand on anyone. It makes your interactions and reaction with the world around you chaotic at best. That also creates frustration which adds to the stress and then you're even worse off than before. Then other people lose their patience with you (as you are likely also doing for yourself) and guess what? More stress! And, chill out doesn't work.

Improvement can be found in practice for some, but it depends entirely on the person and how strong their disorder is in them. Just like lifting that weight. If you do it every day or even just every other day, your ability will increase. You will be able to lift and lower more times before you have to stop. Some levels of our disorders will not allow for this. Take Multiple sclerosis for example. As a progressive condition, it takes away from what your body can tolerate or do. The practice may slow it down, but it it's strong enough, it will overcome your best efforts.

Because all stressors lend toward your full limit (yes some can be rested from in short periods), people with disorders reach lost limits much faster. Some are always at their full limit. If you were at your full limit on stress like that, you might find it easy to "freak" too.

Do you think?

So you're standing in line somewhere and feeling impatient. The line has been long and you're getting tired. Maybe someone ahead is working slow or someone else is getting confused. What ever the issue you know who it is and you have something to say:

"You disabled people should get out of the way and let a real person do the job." Or maybe you're more of this line of thought, "You disabled bums should get a job and get off my taxes." Either way, you consider them a waste of space and nothing but in your way. And that person heard you, and you wanted them to. They grit their teeth and shuffle on with what ever they were doing. They don't say anything back to you but someone certainly should.

Do you think?

Do you think, as a child, when the teacher asked them what they wanted to be that disabled was the first thing they said? Do you think they said it with a great big smile because they knew it would get in your way?

Do you think they enjoy not being able to do all the things they once enjoyed? Do you know them personally and know what made them that way?

Do you think that soldier who fought for freedom celebrated that shrapnel in his head? Do you think he feels like a success story as he now muddles through his day?

Do you think that guy in the wheelchair was hoping for a roadside bomb to amputate his legs? Do you think that anyone asks to be disabled when they say their bedtime prayers?

Do you think children with down syndrome and autism somehow planned it that way? Do you really think that person would rather be disabled than gainfully employed today?

Do you think they enjoy feeling worthless and unable to do normal things? Do you really think that being on the internet is the same as doing a full time job? Because, since they can move their fingers, that means they can be hired for anything. And who will you direct them to for this magical employment? Maybe it should be you.

Especially, do you think it really helps to hear the cold and callous words of someone like you who knows nothing of what they've been through? Do you think you're helping?

I didn't write this today because of anything recent that happened with me. I wrote it because of all the times I see scorn for the disabled and more for the fact that they want awareness. The truth of the matter is, if it weren't for the people who so flippantly throw their ideas out with callous disregard and lack of knowledge, there would be no need for awareness. If it weren't for people who think that the disabled should just rot in a room somewhere (like "you")there would be no need for the parades, walks and marathons.

So next time you see someone out for awareness with their flag held high. Remember when you scorn them, that you are the reason why.