The Nerdist Wayfarer

(This update follows 4 previous posts called The Nerdist Way 10-3-12Team Nerd 11-1-12The Nerdist Wimp 1-1-13, and The Nerdist Score- ‘aspie spoonie Lexx fan on a mission’ assessment 10-31-13.)

Chris Hardwick published The Nerdist Way: How to Reach the Next Level (In Real Life) on 11-1-11. I remember him talking about it, I remember being first in line for it at my local library and still having to wait for 3 months for interlibrary loan, and I remember finally being able to read it. I couldn’t renew it because so many other people had it on hold at the libary, so I played the musical book game, getting back in line on hold every time I turned it in. A year later I finally had a little extra money and bought two copies, one for myself and one for my daughter and her husband.

I asked to be referred to a psychologist in 2007 specifically to work on public interaction after failing dismally at maintaining what could have been a very lucrative public friendship. He diagnosed me with Asperger’s and depression and assessed my GAF score at 51-60, wondering how I’d been able to get a college degree and actually hold jobs. He didn’t think my social anxiety was as severe as I thought it was, despite my having shut down all social media and ignoring the internet for an entire year. I’m also not a phone person, and he worked pretty hard with me on staying in touch with family. During all this time he watched me plunge through complete disability and helped me focus on a holistic approach to my physical and mental health during a pretty miserable couple of years. In 2011 a doctor finally diagnosed me with diabetes (on top of my already severe fibromyalgia and lupus flare ups), and once I figured out that what I was eating kept me from healing, I figured out how to turned my life around and have been getting healthier.

One vital thing further changed my outlook for my future- yep, the Nerdist book. It’s hard to figure out a direction when you can’t even do the things you enjoy for distraction, but Chris outlined his path out of his abyss, and I basically followed it. I’d read self help books before, not one of them worked at all. Chris has a completely new and fresh perspective on how not only to survive but to thrive, no matter how bad the problem is. My own problems include a very glitchy brain, so when he said my kind of people are geniuses spinning wheels and what we need is direction, I was all over that book.

I’m one of those smarty pants that tested in the top 3 percentile in high school, got over 30 on my ACT, and dumbfounded professors with my GRE scores going into grad school, but I also experienced epic brain fail between a couple of nasty viral infections and regular autoimmune flare ups, continual high pain levels coupled with handfuls of meds, and diabetes making it all worse. My brain fog was so bad that it became part of my complete disability. Using my brain on the internet became akin to crawling like a worm on the ground trying to get somewhere. Trying to keep any kind of direction going in my life besides not screwing my day up going to an appointment on the wrong day was pretty dismal. I had no direction at all, couldn’t see a way forward, and felt so utterly useless that I don’t know how I even lived. My psychologist told me perhaps my Asperger’s cushioned me against the possibilities of suicide, alcoholism, and divorce, because most women my age become wrapped up in those three biggies, even without overwhelming chronic illness egging it on, but I was nowhere near being a happy camper. I was the glum soul writing lengthy posts on why happiness doesn’t exist.

Then he watched Chris Hardwick’s book change my life.

My psychologist ‘turned me loose’ several months ago. He thinks I’m doing so well that I don’t even need to check in. My psychiatrist has told me he’s cool with me not being on any kind of head meds. I’ve worked very hard to survive depression without meds, and I have to say it’s not easy convincing a psychiatrist, so that was a big win. My doctor is thrilled that I’m off the xanax and vicodin other doctors had me on for years. I was just as addicted as any Hollywood actor flushing their life down a toilet, but I had an excuse, right? Wrong. I decided I’d rather not go down a toilet and disappear. My neurologist says I’m still healing from years ago trigeminal damage during a nasty car wreck and I will keep healing as long as I control my diabetes. My physical therapists have got me mobilized, not just up walking around but doing full spinal core strength, which has been very challenging, but you know what? It’s awesome being able to shop for my own groceries. It’s wonderful not needing help in and out of a shower. It’s marvelous being able to control my pain levels with movement.

Because I took Chris Hardwick’s book very seriously (follow my story in the posts I linked at the top of this post), I am also rebuilding my ‘web empire’. This hasn’t been easy, either. I’ve been taking very tiny steps, but since Chris coached me how to set goals and then list out the steps to reach those goals, I have been able to build what looks like a lot of work. I have been able to find purpose and joy in what I’m doing, and now I consider this my ‘job’. I work every day, I love my work, and one day my work might even pay off, but for now, I’m very satisfied that over the last two years I have come out of a wretched black hole of hopelessness and spread my wings. I no longer feel like a dismal failure face planting on the couch every day. I no longer feel sad and angry.

It’s been two years since I wrote my first post about how The Nerdist Way has helped me change my wreck of a life into a more enjoyable day by day experience that I feel good about. I can’t recommend this book enough, especially if you feel stuck and don’t know what to do next. If you have trepidations about any part of that book, please read back through my series about it, and be patient with yourself. I know exactly how hard it is, and I’m here to tell you it’s all worth it. You don’t have to croak off alone curled up on a couch because you’re hitting dead ends with doctors and jobs and despair. If you need more convincing, check out my other blogs and follow me, not just surviving depression and chronic illness, but thriving.

Spaz– my spoonie blog

PinkyGuerrero– my personal blog

Lexxperience– my fandom blog

Surveypalooza– my distraction blog

Aspienado– my aspie/work blog

DuckLordsOfTheSith– my pet chickens blog

And you can always find me on facebook and twitter.

And very definitely click this pic to get the book.

 

 

Embracing the Squirrel

Imagine if someone told you for every good day you have the rest of your life, you would have three bad ones. Every week you would have only two good days. Every month you would have only eight good days. Every year you would have only 96 good days, the equivalent of about three months.

Now imagine that you don’t get to choose when you have the good days. You don’t get to count on the good days coming on a regular schedule. You don’t get to know how many good days you might get before you have bad days again. You can’t plan anything in your life without knowing your plans won’t fall through or be ruined at a moment’s notice because there is nothing you can do to keep the bad days from showing up.

Imagine living like this for most of your life. Imagine what a drag you might seem to your friends and family. Imagine what it must be like for other people to have to listen to your complaints for most of their lives. Imagine the burden you would feel like on everyone around you because you not being able to keep up means you drag them down, as well. Imagine raising kids through all this. Imagine missing years of school activities and family get togethers because of this. Imagine disappearing from general society because you can’t bear the drag you’ve become on the people around you.

Let’s start over.

Imagine if someone told you that your existence on this earth would change lives in a variety of ways. Every week you would have an opportunity to do something crucial in someone else’s life, every month you could change history, and every year you would be loved for being there when no one else was.

Now imagine missing all those opportunities because you had to be at work, or because you were in a bar drinking with your friends, or because you were able to spend all your money on shopping and eating out.

Imagine the rest of your life being filled with people who were so glad you showed up for five minutes in their lives in the middle of the night, so thankful someone out there said exactly the right thing when they needed it most, so grateful someone else had the time to notice they were having a bad day, too. Imagine being thanked for your kindness when all you did was log onto your computer.

Imagine.

You aren’t a drag just because you are stuck. Free your mind. Create the world you dream inside you. Share what makes you feel happy. Find others who help you laugh.

Imagine finding out at the end of your life how powerful you were in other people’s lives.

Preparing for Flares.  Yeah, it’s depressing, but you know what? I like the person I’ve become.

The Nerdist Score- ‘aspie spoonie Lexx fan on a mission’ assessment

It’s been a little over a year since I came out about my real life and wrote my article about how Chris Hardwick’s The Nerdist Way got me started down the right path to evil villain success, following that up through the winter and spring with a couple of assessments about the progress I was making. Over the summer I got scattered in the impending Xanga relaunch wind, but now it’s time to see where I’m at.

Last year around this time I had come through eight weeks of physical therapy for severe lower back pain and extensive nerve involvement affecting various functions and was starting to regularly visit a fitness center to build core strength. I started out on a NuStep barely pulling about ten minutes at work level 2 or 3. Seriously, that was all I could do, but after several years of severe illness and consequent weakness and immobility, that was actually pretty good. Over the winter and spring I managed to increase my workload and workout length and add a couple of machines, even through a lupus flare up. I did another eight weeks of physical therapy through the spring and added more workout machines, and then sixteen more weeks through end of summer and early fall where we were able to identify how I trigger waves of severe fibro lasting several days using certain machines, even at the lightest workloads and a handful of reps, so I was told NOT to use those machines (my muscle tone is quite excellent, thanks to the continual kinetic working out the fibromyalgia puts me through, so I’ve been commanded to stay focused on core strength, flexibility, and mobility). At present I am able to pull 20 minutes on a NuStep at workload 5 or 6 (depending on how I’m feeling) doing 20 more steps per minute than I could several months ago, and afterward tool around town running errands, carry in groceries, and then work on easy chores through the rest of my day. I never dreamed I’d be this capable again. I still have a time limit with the chronic fatigue before I hit my wall, so I’m still pretty limited to driving only as necessary. Once I hit my wall, my brain falls out and I make very poor decisions in traffic (any aspie and spoonie would know that driving in inclement weather or in the darkness decreases the time I have left till I splat all over that wall). On days I stay home I can easily brisk walk for about 30 minutes now, which is sweet since 4 years ago I was having to use a motor cart to get my shopping done because I could barely walk at all.

In the meantime, I’ve been perplexing several doctors with an all new thing going on, which I finally talked about at spaz: Agrajag. It’s still going on, very weird, but I’m hoping that the ‘numbness’ I feel nearly all over my body sometimes now (starts with my head) is just my nervous system going through a sort of shock from my pain level being so drastically lowered, because all anyone can agree on at present is dysesthesia, which I try not to think about as terrifying, given CNS lupus (but I have to keep in mind all the occipital, trigeminal, and cervical nerve damage I’ve been through, so this might actually be ‘normal’. I honestly haven’t known what normal feels like since I rolled the car when I was 19.) I still get pretty good pain levels that some people would probably think is a ten on the pain scale (the pain scale is objective and relative, this isn’t a contest!), but it’s so much nicer than my nervous system continuously screaming at me that I’m almost happy about it and don’t mind much. Still, it’s very ‘unnerving’.

The problem with this new sensation stuff is that I can trigger these numby sensations a little too easily by working out too much without enough rest in between. I hit a big wall this week, so I’ve got to back off again and let it all settle back down, because the last thing I want is an inflammation flare up in my brain (vasculitis caused by lupus flare, the brain is Nerve Central, as it were). I may be in the best health of my adult life now as a 30 year lupus survivor, but that doesn’t mean I can do whatever I please and get away with it, and I sure don’t want to find out the hard way! Now that I’m having more energy, it’s hard reigning myself in on days I feel more fantastic than usual.

So right now I’m staying focused on plenty of rest and water, good nutrition, yes I take vitamins and a magnesium supplement (no herbal supplements, I have allergic reactions to too many things, sorry), and staying busy with fun stuff so I won’t feel depressed with thinking about this weird numby stuff. There’s no reason right now to think this is a bad thing (it’s been going on for months with nothing getting worse), and I’m actually very thrilled I passed a treadmill stress test with flying colors earlier this month. Even the cardiologist couldn’t believe it given my age and medical history, so THANK YOU CHRIS HARDWICK.

In other assessment, my Lexx blogging has come to a standstill while I wait to see where the Xanga dust settles (as they call it) before I put more work into it, and my first book launch timetable has undergone a schedule revamp because the blogs are a mess, and with holidays coming and cold weather spiking a few problems for me, I’m just rolling with what comes. It’s helping a great deal that SnarkAlec Radio is keeping me on a schedule of sorts. I’m the kind of person who needs a schedule from an outside source to keep my own stuff on track better, helps me pace myself mentally and physically. It’s also helping a LOT to have twitter buddies so I don’t sink into an emotional lethargy being a hermit. If you’re struggling with disability and feeling a little lost, I really recommend getting a twitter account so you can feel like you’re part of the world in real time.

I still have really big plans. I’m contracted for two books to start with, have several more in the queue, have discussed a podcast idea with several people, and of course I still intend to build the largest Lexx film study on the internet. Takes time. As you can imagine I really don’t watch a lot of TV, but my fave shows right now are It’s Always Sunny in Philadelphia, Continuum, Once Upon a Time, Key and Peele, Strangest Weather On Earth, The Big Bang Theory, Tosh.0, and I’m waiting for the Doctor Who 50th Anniversary. Scott watches all the rest- The Walking Dead, Hell on Wheels, Revolution, Arrow, Grimm, Defiance, Marvel’s Agents of S.H.I.E.L.D.The Tomorrow People, Sleepy Hollow, and I’m sure I missed a couple. We both watch Person of Interest, Falling Skies, and Under The Dome. Scott’s shows are stacking up in the DVR because he works around the clock and watches only an hour of TV on weeknights most of the time. I’m sure we’ll catch up over the holidays, unless he gets lost in Legend of Zelda again. And through it all I’m still filling up my stack of spirals.

Oh yeah, one more assessment. I haven’t been able to read very well since 2004 when a virus first hit my brain and screwed up more nerve stuff with my eyes, but this month I flew through a novel in about 3 days flat for the first time in years without getting eye strain, and last night I drove home in the dark without getting nasty shooting pains through my eyes every time light hit them. I’ve noticed I’m more easily reading black and white on my monitor, too, so this is icing on my assessment cake. There was a time I thought I’d be going blind (not that uncommon with lupus) and even prayed to if only the pain would go away.

So in spite of how this all looks, I’m having a truly fabulous year, I’m enjoying so much more than I use to be able to, and I’m looking forward (pleasepleaseplease) to more improvement over the coming year. I think the key to it all is holistic health and psychoneuroimmunology, which I’ve been working real hard on. Years on pills never made me better, it only jacked me up enough to keep me working till I crashed completely. I think the question is How badly do I want to feel better? What am I willing to do to feel better? What kind of commitment am I willing to make? This year has been a real grind, 32 weeks of vigorous deep tissue therapy, getting my workouts in at the very least once a week but usually 3 times a week no matter how rough I feel or what the weather is like (I have to commute to a fitness center, I’m way out of town), keeping my shopping done so I’ll have good food to eat instead of junk, and definitely making myself do something nice or useful every single day for someone else. Feeling good about being here on this earth is crucial, and I have to work at it every day, it doesn’t come easily to me.

So where will I be this time next year? I’m *hoping* I’ve got the publishing ball rolling and my blogs all fixed by then. I have no idea if I’ll make any money, but who cares! Main thing is I’ll be splatting my brain all over you guys, a sport I truly love and get joy from. My long term goal is to make it to Ireland someday. Need the money and need the health. Working on it.  

I love this guy.  This song cracks me up because I used to be so medicated I was as wasted as anybody can get all the time. I’m clean now, no meds. At all. I’m biwinning!

And for the MerLexxians, thanx for stopping by!  Everybody knows when my twitter feed fills up with Bradley I’m getting through a rough day, may as well enjoy it!

This continues at The Nerdist Wayfarer.

winning the suck contest

This week Sept 9-15, 2013 is National Chronic Illness Awareness Week. Actually, I think it’s worldwide. And I think it’s being called Invisible Illness Awareness Week now –> http://invisibleillnessweek.com/

I have a special blog called spaz at http://jankita.blogspot.com/ for my ‘drag’ posts. I don’t write a whole lot of those for the public, but when I do, I make sure they don’t suck to read.

pill phobia at its finest –> http://jankita.blogspot.com/2011/03/pill-phobia-at-its-finest.html

blinking in the light –> http://jankita.blogspot.com/2012/07/blinking-in-light.html

walking in the air –> http://jankita.blogspot.com/2012/08/walking-in-air.html

I like it dark –> http://jankita.blogspot.com/2012/12/i-like-it-dark.html

I’m blue –> http://jankita.blogspot.com/2012/12/im-blue.html

aspie overload –> http://jankita.blogspot.com/2013/09/aspie-overload.html

I know it’s hard. Believe me, I KNOW.

There are two ways to look at life- selfish vs. selfless. The biggest challenge I ever had was figuring out how to cut through all the overwhelming pain, fatigue, and brain melts to be kind to other people. It’s so easy to fall into the dark pit where you think because it all sucks for you that the rest of the world owes you and has to excuse you. Um, no they don’t. No one owes you anything, and there is no excuse for treating other people badly, no matter how crap your own life is. I don’t care how unfair life is, if all you can do on this planet is whine and moan and treat other people badly, you suck.

I had to face this. I had to own the fact that I suck. I had to accept that life is unfair. You cannot truly go on until you take these things into yourself and digest them down into something you can turn inside out into being someone other people actually want to be around. (That sentence was a handful.) No one wants to be around you when you suck. And no matter who you are, life will always feel unfair. You don’t get context until you go through stuff yourself, and any time something doesn’t go the way you want it to, it sucks. Simple formula.

There is no contest. I’m not out to win My Life Sux Worse So You Have To Be Nice To Me More Than I Have To Be Nice To You. But some people ante up like it’s a contest. We each have a headache, mine sux more than yours, ok but mine is on top of this bad day I’m having, and we go on and on building up these monuments to our bad days. You know what? There is nothing more depressing than trying to win the worst day contest. Just everything sux, let’s move on to another subject, ok?

I’ve had 30 years of life altering suck. But I noticed some people have way worse suck than I have. I may live with pain levels that would have other people thinking suicide, but I’ve never been in a fire. I’ve never lost my own child. I’ve not yet had cancer. Yeah I’ve gone through stuff, but there is no comparison between me and someone who has been in a fire and had reconstructive surgeries and still all scarred up. They have their own suck, I have mine. Same with any other pain, grief, and despair. Sooner or later, I don’t care who you are, your life will suck in ways that you never dreamed would ever happen to you. The sucky stuff opens our eyes and hearts and challenges our souls.

I wrote a sorta lengthy post on my bluejacky blog a few years ago called “Synchronicity, Suicide, and the Eyes” –> http://bluejacky.xanga.com/2008/07/23/synchronicity-suicide-and-the-eyes/ There comes a point where we ask ourselves if being here on this planet is more about us being worth the air we breathe. It’s important that we get past that yawning black cavern of self pity and see the light around us. Even with full blown suck, I’m so glad I got the chance to be here.

Chronic Illness or Invisible Illness Awareness Week, whatever you want to call it, I’m glad another group is ganging up on the public because there really does need to be more thought out there about stuff all around us that we might shrug off or take for granted. For instance, I have difficulty pulling or pushing doors open in public buildings, so I need the little handicap button thingy. One year I had a lot of difficulty moving quickly and got smashed in a door in a big beautiful bank because the button was so far away from the door that even an able bodied person without pain would have to walk quickly. It hurt real bad and I cried. It was mortifying and embarrassing and brought all the wrong kinds of attention. There is no dignity in being bruised up by an automatic door on a day you can barely keep it together in the first place to run your errands. So yes, I think Awareness Week is fab and helpful and whatever.

But I’m just saying that we’ll get more awareness if we aren’t hateful and crabby and snotty about it. It’s important to remember that we are ALL human, and that we ALL need to be kind and good at communicating. Maybe it’s not fair that some of us have to do it through a fuzzy static of crap, but other people will listen better if we can be cool about it.

It’s very hard sometimes to be nice when everything sux and it’s overwhelming your brain. I know other people can find me a little shocking on bad days. So my contribution to Invisible Illness Awareness Week is to beg the public to please not take me personally, please blow my crabbiness off when the suckiness is taking me down, please forgive me for seeming like a jerk when I react to something minor, please understand that underneath my reaction is my horrified recoil when I look at myself and then the overwhelming depression that I’m ugly when I suck. I want very much to be wonderful and sweet and for you to like me, but some days that feels almost impossible. So please love me anyway, even when I suck.