causal awareness

I struggle every day with a human phenomenon known as blame, and I know others do, too, so I'm going to go through a thought process with a list. Some of the list applies to me or other people I know in real life, others I know across social medias, and still others I've read on blogs or in articles. I'll make this simple.

YOU did not cause your cancer. You might live in a body that is genetically and environmentally more prone to cancers, but your actions are not to blame for you being born in that body. There are plenty of people who never get cancers even though they do all the things that can contribute to cancers, and there are people who get cancers even though they do everything right to avoid them. We cannot see our body coding and the actual factors that actually trigger a group of cells to start skewing into madness, so how can YOU be to blame? That being said, yes, there are things we can do to limit the possibilities of aggravating cancer eruptions, and there are more things we can do to heal and restrict them. But never for a second believe that YOU caused your cancer.

YOU did not cause your arthritic condition. Choose one, there are so many kinds of inflammatory arthritic conditions on this earth. You might live in a body that responds incorrectly to information feedback, and it hurts, but you are not to blame for that pain you live with, the pain that makes everything hard, the pain that no one else understands. There are lots of people around us who can be as active as they want with their bodies and never elicit a self defeating inflammatory response. Good for them! But we cannot recode our bodies to stop responding incorrectly, so how can that be your fault? That being said, yes, there are things we can do to hold that response down, to stay functional, and to manage pain. But never for a second believe YOU caused or deserve your fibromyalgia, your achy joints, your severe spinal pain, your nasty headaches. NO ONE deserves pain like that, and you are fantastically brave living through it.

YOU did not cause your diabetes. A family could be genetically riddled with it, and one person gets skipped and can eat bags of candy without ever having a glucose spike. So hard not to be jealous of that, especially on holidays and other get togethers where people eat whatever they want without a care in the world. Logically, if we could cause our own diabetes, the entire human population would probably have died off by now, right? Our choices are not what causes an epic fail in our digestive system to process a major portion of our food. That being said, yes, you can make it worse by ignoring it, you can make it better by paying attention to it, and you can learn to live a long healthy life with it. And then there are some people who do everything right and still have a horrible time with it. NEVER feel guilty for having diabetes. Diabetes is no one's fault.

YOU did not cause your child's genetic defect. Spina bifida, cystic fibrosis, Down's, cerebral palsy, insert long list of genetic problems at birth with a variety of reasons for happening. Scientists find out why, medical experts look for ways to avoid them, but you did not bring that on your child through any fault of your own. We are innocent to the mysteries of the universe, and we do our best with who we are and what we have, and ironically, it might not even matter if you come from poverty or wealth for these things to happen. They simply happen, and we learn a great deal about ourselves learning to love and help special people with extra needs. That being said, we can now ask- Where would we be without this compassion in the world, and I daresay the extra drive to find out how our bodies function and thrive? Others who proclaim judgment being expressed are much further away from learning compassion and will take longer to understand what is missing from their lives. Simply nixing the problem has a way of backfiring, as we can see through history. People become harder and meaner when they weed out the weak, which casts long shadows on notions of spirituality. Some even suggest the weak are here for us to learn to be better. NEVER believe your child (or you, if you are an adult living with a genetic defect), is your fault.

YOU did not cause your mental illness. Brain chemicals are much more complex frontier than digestive chemicals, and neural synapses and miles of nerve pathways are more intricate than nearly anything else that is scientifically studied. This mystery of consciousness and awareness being possible on a physical plane is still so overwhelming that we still don't know what to do with it, so it's easier to make slots for behaviors, like a fishing tackle box. This goes here, that goes there, and if you don't fit a slot, then woe be to ye. We are finding out it doesn't work that way. Everyone's consciousness swims through a sea of chemical interactions, and some wade through sludges that make getting through a day very hard. Who in the world even wants that? And then the medical experiments- we haven't come that far from institutions and lobotomies, and now controversies over raising generations of medicated children. No, you didn't cause any of it. We're all swimming in this chemical sea, and so much is easily masked with drugs and alcohol in attempts to deal with something we still don't understand is happening. That being said, yes, opening our eyes to learning new cognitive concepts is the first step, and choosing to learn how to live better with our chemical imbalances is sometimes preferable to self doubt, self loathing, and self harm, but YOU didn't bring this upon yourself.

YOU did not cause the bad weather happening to you and your people. Droughts, hurricanes, earthquakes, flooding, fires, meteor hit, lightning strikes, hail damage, tornadoes, wind sheer, avalanches, and all the resulting illnesses, crop failures, transportation problems, famines, injuries, deaths- all are just part of living on this planet. You are not to blame for where you live and your behavior didn't cause a deity to mass torment everyone around you. Sooner or later one area or another will go through a massive tragedy, and that is when we find out how kind and generous the rest of the world can be. That being said, yes, we can take steps to make surviving catastrophic events more probable. We are working on early warning systems, better travel in some places, programs to help those in need of rescue, and for those who can afford it, insurance plans to hopefully make rebuilding easier. NEVER EVER *EVER* think the world is terrible for everyone because a handful of people deserve punishment, because it doesn't make sense for any God who is rooting for humans even slightly to be meaner than we are, seriously.

I could go on in many other ways. I'm not even going to touch being born into religions, political regions, skin colors, and especially orientations (which I personally think are as varied as everything else we live with in our bodies), but you can see how none of us cause our own circumstances that we are born into. There is no reason to blame ourselves for what we must live with, and no reason to hate others for what they cannot help and didn't choose. NONE OF US GOT TO CHOOSE WHO WE ARE. Anyone who thinks they can judge another from where they sit very simply just wasn't born into a different body, different family, different place on this earth.

There is this thing that happens inside of people when other people judge. We turn it into self loathing and self harm and then feel frustrated and angry back at the world for our self blame. We don't mean to make things worse, but hating ourselves and other people based on what other people say or think doesn't help ANY of us at all. Fear and sadness drive us into dark places, and allowing ourselves to be driven into ways of thinking that we abhor is super fail. We can believe what we want to.

I believe we live on a really tough planet in fragile bodies and most of us are really really scared because bad things keep happening and we feel like there's no hope sometimes. Yes, but that's only one side of the coin we call awareness. I also believe we live on the most beautiful planet in our galaxy in awesome bodies that teach us what being real heroes is all about, and WE are the hope we are looking for.

Be excellent to each other, never give up (never surrender!), and go be awesome. I love you guys.

looking outward when looking inward backfires

I started this 13 days ago and then forgot about it.

I was recently asked on twitter "do you go through the 'why me' why do i have to deal with this rubbish stages?" and I replied "very rarely, bcuz it destroys me & I ruin everything". More recently than that I was part of a discussion about the whole "it's not fair" point of view about an entirely different situation. The first situation was about being trapped in crap bodies, the second was a relative deprivation kind of thing where someone else is setting the rules in your head for what life should look like.

I have so many stories about the unfairness of life, but I think the fastest way to get where I'm going today is to ask where in the world the idea of stuff being fair even comes from. I have seen absolutely nothing in my lifetime that suggests there is such a thing in human existence, and no idea more destructive to relationships, self esteem, and point blank survival.

I don't need to bring all my stuff up again, or that one of the ways I handle embracing my own stuff is by noticing others who are handling even more with good grace and modeling on them. There's really no comparison between my daily pain level and someone's face being 3/4 burned off, or a baby born with a genetic terminal illness or having very early cancer. There is no winning the suck contest between any of us, because life on this earth sucks anyway, and the only reason we drift away from that is because some of us have developed enough of a financial cushion to distract us from worse, unless our personal pain is so immediate that even that means nothing.

I don't know how other people live daily with the thought in their heads that life isn't fair and why me. Since I was a very small child I have never survived a 'poor me' day without something catastrophic happening, one of the earliest I can remember is actually overdosing as a toddler after my mother ignored me doing something else. I have never in my entire life thought 'life is wonderful' or 'I love life', but I'm very thankful to say that I have developed an "I'm so grateful I got to be here and see and learn this" attitude.

I'll never make a sales pitch for life on this planet being anything less than grueling, and that goes for every single person born here. Sooner or later, we all hit that spot where life sucks so bad in some way that we feel inconsolably sorry for ourselves. You can be any age in any socioeconomic status in any country and still feel so lost in despair and ennui that none of the rest matters. You can be top of the heap or part of the trash at the bottom and feel that exact thing, because this is an inevitable human emotion we all go through sometime or another before we die.

There is a voice I hear in my head on bad days. It comes from real life experience, from being friends with people who got me stuck in a very bad situation, and a baby was starving to death the entire time. It was 10 months old and still not sitting up, and its crying had become so weak that it was more like a faint wispy whisper. Every time I feel sorry for myself or bad for humanity, I hear that. I hear utter hopelessness with no comfort. I hear no one to save us, and no way to save ourselves. I hear the saddest thing our universe has ever produced or hosted, and if I dwell, I have a very bad day.

I don't talk much about some of the things I've seen, some of the places I've been or the people I've met. I've watched a few people wilt around me and fade away, even with help all around and people all but begging them to reach out. There is a place inside us that we don't come back from if we don't kick and fight, and we can't always do that. We might truly want help, but we become helpless to let help help us. I went there one day, and the only thing that saved me was a fading thought of please do this for me because I can't hold on any more.

~~~~~~~~~~~~

I must have gotten a phone call or something. I was about to tell you another quick story.

When I was in high school, I begged my mom to get me to a psychiatrist. I was a high IQ student failing most of my classes, avoiding people, even committing real sabotage and getting into fights my mom (and the rest of the world) never found out about. I went so deep into my head that I felt like I was watching myself, and the longer I stayed in the back of my head, the easier it was not to surface and feel anything. After a few months of that, a tiny thought got through to me that maybe this wasn't a good idea, and I started trying to push my way back out again, back to my face, back to in the moment feeling stuff, but by then it was so hard and I was so out of practice even trying that I almost had a very tiny panic attack about it- except I couldn't even feel myself having a panic attack.

I can barely even describe that moment, when you know it's time to do something and that failing to act NOW is the very big difference between two very different futures. I could not make myself care. And it wasn't just ennui or the blehs. I was so stuck in the back of my head that I realized I might never care about anything ever again, and as I realized that, I saw a picture of people feeding an unresponsive me, limp and letting food sit in my mouth, staring at nothing, and wasting away but for the service of others over a body and soul I had abandoned.

I didn't like that picture. I grew up hating hugs and any other contact, hating being told what to do, hating that no one listened to me, hating that other people got to make the rules and make my life miserable, hating that no one cared what I cared about or thought about or how I felt. The worst possible hell I could imagine was other people actually touching me, putting food in my mouth I didn't want, putting clothes on me I hated, and not being able to stop any of that because I wasn't there. As incredible as it sounds, my one last salvation in my last moments in this world before I completely shut down was HATE. But I couldn't boil up enough hate to take action. I couldn't even feel a whisper of enough hate to push back against that picture and reject it. That was the moment I knew I wouldn't experience waking up the next morning, because I'd be so deep in my head I'd never consciously know the world around me again. The reality of that moment is so real that NOW it terrifies me how close I came to letting go of being.

What could I do? I couldn't save myself. I couldn't care enough to tell anyone. I couldn't see a way out of my own hell. I watched myself keep slipping away into a nothingness until I was laying in my bed barely hanging on to staying awake as long as possible, because I believed if I let myself fall asleep I would be lost forever. As the last of my mental fingertips finally slipped off the tiny mental ledge I was barely mentally holding onto, I thought to anyone who could hear my thoughts at all, "Please hang onto me because I can't any more", and that was the last thing I remember about that night as the last of me slipped away into nothing. I don't even remember dreaming or waking up in the night.

The next morning I popped awake like no time had passed, but all the time had changed, the world had changed. I was back in my face again, right up front feeling EVERYTHING after months and months of nothing. I sat up fully awake, feeling myself breathe, looking at every little thing in my bedroom, feeling the floor on my feet. When I walked into the kitchen I heard my mother sing out "Good morning!" and smelled bacon cooking. I hadn't smelled food in months. And I said good morning back to her. I don't think I'd ever done that in my life. I was actually glad to be able to say good morning, and I enjoyed my breakfast. I remember so many details from that day- the weather, the bus ride, all the smells and noise, not being angry or meh in school, just feeling everything. Just feeling me feeling everything.

I've never shared that story anywhere before online. I brought it up with my psychologist a couple of years or so ago, and it's part of my delayed response disorder, or postponement of affect, which is part of my neurological processing to begin with because autism spectrum, but likely also a result of emotional and psychological trauma. Basically, I am really super good at dissociating.

I'm not the sort of person who automatically throws problems at God and then thanks God for whatever while I'm suffering other stuff because I'm 'supposed' to. That's dumb. Thanks to my extremely religious parents, I grew up believing I'm not worthy, I'm here to suffer in order to learn, and that suffering is good because it is later rewarded, so shut up and suffer in silence, or at least gracefully. Worse, anything psychological was seen as government invented hokey used to brainwash and control people, so you can imagine I NEVER got the help I needed as an autism spectrum child being raised by really weird parents with such tight blinders on that the holes they peeked through were like pinpricks, and they defined everything in their worlds through what they could gather from the light coming through the pinpricks.

Meanwhile, I was the kid questioning the blinders and constantly tearing them off my face and seeing horrors and atrocities that I swear are as ugly as the alt world views we were supposed to be against, and some of them were pretty immediate, and some of that was inflicted on my poor body. I've been emotionally traumatized nearly from birth and grew up so broken that a psychologist suggested that a disorder called narcissism might have been what actually saved me from the self destruction of anorexia, self medicating, self harming, and suicide. Thank God for my weird brain, huh? THANK GOD FOR MY WEIRD BRAIN. God gave me a brain that survived all that.

I believe that part of the praying process is about focusing what we need into future problem solving, and that the unconscious parts of ourselves respond to that. I'm not into faith healing, because I think that's a real chain yanker, but it actually does work for some people and I have my own stories about it myself. I don't think whether it works or not is a judgement from God about our worthiness or whatever. I do think that our brains are very powerful tools and that when we focus (keeping in mind that religions are pretty much about focusing our thoughts), we create a direction and a goal. When we consciously acknowledge and make a statement to ourselves about what we want, our brains are tools that help us solve the problems we are having. It may not always be clear or quick, but at least once we are focused, we are in the right place for positive change.

There's this thing called pyschoneuroimmunology that is a holistic approach to health of the whole being. This is NOT a will of the mind heals thing. This is seeing the whole person, physically, emotionally, spiriturally, cognitively, and how all these interrelate into how we process out our stuff. We express our stresses in so many ways, and stresses include everything. Life on this planet is stress. How we see and feel and react to and work around all our stresses affects everything we do going forward from each moment. In my own case, and many times throughout my life, I've survived a lot of really awful things because I wanted to. Even when I felt my most helpless, I was able to consciously choose to want to be aware of my moments.

Mental illness is tough, chronic illnesses suck, injuries and emotional traumas inflict us from all sides. Why do I still want to be here? I'm past child bearing, so it has nothing to do with surviving to pass on my genes. I'm in and out of various levels of misery every single day, so it has nothing to do with actually enjoying experiencing anything in this body, so that rules out personal greed and selfishness seducing me. I'm very tired a lot, but I'm still driven to share everything I can before I can't any more, and I don't want to leave until I've done what I'm here for. That's kind of vague, but I think whatever inside me thinks it's here for must know something I don't, and it might be as simple as being the person who's in the right place at the right moment for someone else having a really stupid day, and that person is meant to go on to do something really cool, who knows. We are all important.

Anyway, back to the 'why me' thing. Do I ever ask why me?, and I don't because the second I even look at the unfairness, all the crap I've survived already overwhelms me again- addictions to alcohol and medications, not being able to do things other people take for granted, days/weeks/months so full of bitterness and sadness I don't even know how I didn't really kill anyone, years of unfairness living around people who take so much for granted and shrug me off and even use me like a servant on my worst days, all the judgment inflicted on me as a child, the never feeling loved or forgiven for being born on this planet- omg, how can I even go there? If I get caught in the life isn't fair trap and actually believe it enough to feel sorry for myself, will I wind up in jail? Plowing a car off a bridge?

LIFE ISN'T FAIR BECAUSE I'M WINNING. Y'all can suck it. I have problems galore in so many directions, but my favorite one is the frickin' narcissism, and whoever has a problem with that will curl up and die out of self pity long before I do. I am NOT going down that 'why me' path because IT'S A LIE.

If you are having a very bad rotten day, you are the one with the finger that dials a phone or types on a keyboard. YOU are the one who can find your focus. What do you want? Ask yourself this every single day- What do I want? Get specific. Look at all the ways it might be possible to get what you want. Write it down somewhere, tell someone about it, or wear one of those string bracelets that reminds us of something. Think about it. NO, don't think about killing someone, that kind of stuff backfires. But if you need escape or change or help from someone, define it, own it, make it into words, and then make the words into a series of steps that turn into actions. It starts with "I want" or "I need" or "Help me".

I absolutely do not want to blow anyone off. I'm pretty sure part of my own survival is having the kind of baditude where I figure if life is going to suck anyway, may as well try doing what I want to anyway, within reasonable boundaries because I know my limitations. I don't have to feel happy or validated before I go have a kick ass time hanging around a Hallmark store admiring cool stuff, even if I can't afford it. I still *like* it. I still like seeing what other people do and create and share. I like seeing the world turn.

I may not be able to empathize well with people having 'why me' days, but that doesn't mean I haven't walked that path and beaten it with a great big stick. I really do feel bad for people who have a hard time pulling out of the low parts of the roller coaster, and I know not everyone has that fight in them to go out kicking and screaming like I do, but I will totally vouch for it being sucky hard. I think I'm just more prone to spontaneous over reacting and that terrifies me a little. Me having a 'why me' day would NOT end well. I wouldn't be on twitter letting anyone know, as it were. I know it sounds weird, but my biggest trigger is people responding to me sharing, and it's become really obvious everywhere I go that I don't encourage comments even when they are 100% positive, and THAT, guys, is why I don't ask "Why me?" I wind up blowing up the internet and stuff.

when I'm alone with my demons- pain spikes, PTSD, and anxiety attacks

I've been talking about some of this stuff on Pinky blog, but this one is super long and just needs to go back over here.

So last Friday morning was the MRI bright and early, and as per my monthly epic fail quota, I missed calendar syncing it on all the calendars around my house, so good thing I actually compulsively opened my pocket planner for a quick confirmation, prompting an abrupt charge out the door just in the nick of time.

~Blood-y-HELL~ blogger just took it upon itself to try publishing this already. wtf, dude, I'm not done yet.

>=l

Ok, so anyway, squeaked into my MRI right on the dot, thanx to @bonenado's awesome driving skillz, and then listened to 50s music for 20 minutes.

Reality check 1- The ear plugs did NOT say latex free on the package, and there's no way I can lay through that noise going way past full blown autie sensory overload, so I calculated that I could get through 20 minutes of ear plugs on the zyrtec I'd taken and then start slamming benadryl afterward if I came out with my cheeks all red and puffing up, so going in the tube first thing with anxiety on top of the claustrophobia, rightonrighton. I'd taken a whole xanax, thank goodness. I did take benadryl afterward, but had very little in the way of skin reaction. This is a big deal since I have to wash my hands after I put on my athletic shoes, and the last time I was in a shoe store I wound up in ER and the last time I had shea butter in PT my entire back turned a nasty neon pink. Latex allergies are super real, and it's everywhere. Anyhoo, I choose 50s music because the songs are shorter and I can count them. I figure 10 songs max, this time it took 8. Aspienado does a lot of counting during medical testing. The countdown is the only thing that keeps me from pushing that little button. Oh, and I no longer do contrast. I once had contrast reaction in the tube, and they didn't pull me out while I was begging to be pulled out. Yeah, what's the point of telling a claustrophobic there's a button if they ignore it during an actual reaction. My skin was on fire from head to toe like I was really burning, and by the time they got me out of there I was a weepy mess. I am so very lucky that reaction wasn't worse. Back in 2008 I was ignored, well, nowadays they are required to put a reaction disclaimer in every room where you change into your little gown. I don't do gadol any more, thanx. Anyway, you can see that only added to the overall anxiety problems, right?

Reality check 2- Laying rock still for 20 minutes in an uncomfortable position under duress triggers fantastic pain spikes for several days, no matter how much sedation you're on. Fibro blows up and then goes into full spasm lock mode, nerve trunks and nerve centers light up like it's Black Friday, and there is absolutely nothing any more I can take to make any of it stop or even slow down. I just have to grit my teeth and keep myself distracted and busy till it all calms down again. A simple 20 minute MRI can affect me for days.

I've talked about anxiety and PTSD, and y'all know I'm home alone 12 hours a day, so I thought Hey, why not share how I deal with this? Because I'm not popping pills and calling people, right? So this is Aspienado's tutorial on how I get through a major anxiety spike, like I'm having this morning.

There are nerve centers in your back under your shoulder blades that can trigger upward and wreak havoc, sometimes resulting in nasty headaches or wild lightning pain spikes shooting around your torso in various ways. I've learned over many years that the worst of this lasts about 20 minutes for me and then starts ebbing, so once it kicks up to the top notch, I just hafta get through 20 minutes and then coast down during the rest of it, which can take anywhere from another 20 minutes to several hours. BUT, that first 20 minutes is pure hell, thanks to a big chemical dump on my nervous system.

I used to go to ER. During that first 20 minutes I mimic every symptom of heart attack and stroke, and I've been through the whole EKG, CT, x-ray, holter monitor so many times that I finally decided the only way I might ever be able to tell if I'm really having one is whether I'm still able to easily breathe, so that's the first thing I do, take a deep breath and ignore the pain spikes that rip around my ribcage, because fibro of the chest wall is a real thing and can be easily confused with other real things like pleurisy, which is also exquisitely painful. (Don't ignore this part in case you have a blood clot in your lung, women on birth control, especially smokers, are high risk for that.) So I'm breathing ok, I can walk without gasping, so the next thing I do is get a big drink of water and make sure I've taken my pills correctly for the day. Hydration is pretty awesome, and missing pills can get pretty stupid.

After that, if I'm still walking around breathing ok without any dizziness or something else taking me down, I go through all the motions of getting ready for work, like I used to do in the old days. It's amazing how focusing on obsessing over brushing and flossing your teeth can actually help get you through part of that nasty anxiety attack. It's not only useful and healthy, but after the anxiety comes down you have fresh breath. Hey, I'm not laughing, this is really real for me. I brush my teeth a LOT, and guess what- I don't get cavities, and I've only ever had one root canal in my whole life. (Imagine the anxiety that'll save you at the dentist!) I'm not saying brushing your teeth saves anything if you're genetically inclined for something like receding gums (that's a real thing), but it's still useful. And you can think of other things instead of thinking about dying while you brush your teeth, like how you never see actors with less than glossy teeth, and then you wonder what sort of regime they must go through every single day to always have such clean looking teeth. By the time I'm done drinking my glass of water and checking my pills and brushing my teeth, I've made it through at least 4 minutes of the worst part of the anxiety attack. If you're not taking that long, go back and floss! Doing a crap job won't make the anxiety attack any shorter.

Next is clean clothes. Just strip off, start all over with deodorant and a washcloth and fresh clothes, and then brush your hair. I can't do makeup because allergic (thank you nuts and citrus and the word 'bright' in cosmetic sales), so sometimes if it's really bad I look for weird little hairs to tweeze or something. If I find myself getting lost in that, I know I'll be fine, but sometimes it's just really bad and I can't stand there and have to keep moving.

So after that is getting shoes on, even if I'm not going anywhere. I get my shoes on, make sure my bugout bag and epipurse are stocked, and if I'm not doing any worse by then, I start walking mini laps around my house. I have one of those houses where you can walk from room to room around in a circle back to where you were, so that's my racetrack. If the anxiety is still spiking, I hafta kinda hold myself back a bit so I won't load more heart work on, because anxiety is already stressing cardiovascular, right? But a steady walk usually helps. Sometimes just 5 or 10 minutes of relaxed walking does the trick, and while I walk I can continue to assess how I'm doing or distract myself thinking about other stuff. Sometimes I pick up the house while I walk the racetrack, start a load of laundry or a load dishes soaking, and I've actually been known to come out of anxiety attacks with a cleaner house. Srsly, all the time, guys. I live like this. It is getting better over time, but for a number of years it was pure hell nearly every single day.

During all this, I'm usually dealing with random nasty pain spiking out from the nerve center under my left shoulder blade, damage that goes back to a bad car accident and virtually unreachable in physical therapy. I have a special stretch I can do for a particular muscle that runs underneath, but beyond that, it's all a waiting game. Laying still in an MRI for 20 minutes really sucks to trigger that nerve center for several days, and this morning (3rd day out) is hopefully the last big gasp before it lets go in there. There's nothing like a pain spike to trigger an anxiety attack, and when your pain is unfocused and vague and running along nerve pathways, it's really difficult to tell whether it's something immediately life threatening. Stay off WebMD while you're spiking pain through anxiety attacks. When in doubt, just call 9-1-1. You won't be able to tell if your anxiety attack is ebbing if you keep triggering it with more fear. Just saying. Years of experience here.

My pain spikes travel along nerve pathways, and the word for it feeling like lightning is Lhermitte's. I still have no evidence of MS (they've been checking for years) and a rheumatologist once told me I perfectly described Lyme (I tested positive as a carrier and it's known to neurologically affect people for years, but my doctors still ignore it as causative of anything current), but I did get a solid Lhermitte's notation from a pain specialist in a surgical center several years ago. (A couple of people I know who've had shingles say it sounds like I've lived in continual shingles-like pain most of my adult life, so there you go if you need context.) I go through stringent medical assessment every little bit, and so far the best we can do is 'pain disorder' along with fibromyalgia, although I did finally get a trigeminal neuralgia note in my history, which I'm pretty sure started with being thrown out of a vehicle. Anyway, I'm always very glad they never find any hard evidence for why the pain spikes happen, but that doesn't make it less real, and my medical team in the Mercy system is very sweet to help me find ways to handle living like this.

Anyway, the point is that it doesn't take much to trigger pain and stress, and then it doesn't take much for those to trigger anxiety attacks and PTSD, and then it's all about getting through that horrible surge of fight of flight gripping you when a bunch of chemicals very suddenly dump into your bloodstream without any warning. One thing I've learned to do is check my blood sugar. You'd be surprised how often anxiety attacks follow on the heels of a glucose spike when you're diabetic. I'm not saying glucose spikes cause anxiety attacks, just saying a carby meal can sure make them worse if you are prone to them and have diabetes. Lots of experience here. Don't eat a bunch of sweets for breakfast, ok? Eat proteins and healthy fats so your body can work through that anxiety attack more efficiently.

During the anxiety attack your blood pressure can go nuts, too, and I've learned to NOT check it, because it'll be scary and then go even higher. My highest recorded is 230/115 or something like that. I know someone who's gone higher. If your blood pressure popping freaks you out, you can call 9-1-1 and they'll get you on oxygen and sometimes IV, spray nitro under your tongue, and by the time you get to ER it'll already be coming down if there's nothing else going on besides the anxiety attack. I've done this so many times. Local ambulance noted I'm a frequent flyer several years ago, and as insurance and medicare really don't like picking up that tab, I am doing better and better about getting through these nasty 'panic attacks' all by myself because I'd rather spend what little money I have on food and tech and stuff. Remember, I'm home alone 12 hours a day, and I'm way out of town. Most of my neighbors (I have 3 close by) are gone during the day. It's up to me to learn how to deal with my stuff. Yes, I have actually learned how to prioritize having anxiety attacks so I don't have to deal with the added fear and guilt that comes with how much money they cost, although some people do the opposite and drop dead at home because they don't think it's worth finding out nothing's wrong, so don't be dumb about it, ok? There really are people out there going to ER every day during bad PTSD months and others that eventually get found alone in their houses, so- moderation. You don't have to assume something is wrong or not wrong, all you have to do is NOTICE THE PATTERN.

It takes time. Keep notes. Look at the clock, notice how you feel, write it down, look back at the clock in a couple minutes, notice how you feel again, write it down, and do this every time you have an anxiety attack. It didn't take more than 5 of them for me to realize I actually have a pattern. Some people have different patterns. After noting my pattern- 20 minutes of hell followed by 2 to 4 hours of misery but lessening fear- I began noting events leading up to the anxiety attacks going off. I have figured out several trigger events, and that some of them aren't even true anxiety attacks! Some of it was actually food reactions, imagine that. Stop eating something, fewer anxiety attacks. I can't eat a lot of potatoes. I hold back on them anyway because I'm diabetic, but guess what- people with latex allergies are supposed to be weary of potatoes. Wild, huh? So if I eat a half a baked potato once a week, I usually eat one of those chewable children's benadryls with it (I also take a zyrtec once a day), and I don't seem to have that problem. Sometimes I need a little benadryl when I eat a big salad. During peak allergy seasons, my higher histamine levels seem to make me more food reactive, and if I'm not paying attention, it feels like I'm having an anxiety attack, when really it's a food irritation.

And then there are stress triggers. I'm extremely triggerable. I avoid so much stuff to avoid either weeping all day or going into massive anxiety attacks, including entire radio stations, most of the facebook and twitter people I follow, nearly everything related to news updates, pretty much anything that triggers me emotionally. (This was way worse on muscle relaxers and other meds that can affect mood. Getting slowly cleaned off meds helped me a LOT with the continual trigger thing. Please remember I did this under supervision from my doctor and a psychologist, and then it had to be approved by a psychiatrist, which took another year. Supervision is key. Be honest with your medical team and trust them to really help you.) Once an emotional trigger hits me, I just toss off the rest of the day, because I generally don't recover from that kind of trigger, and if I don't want to wind up having anxiety attacks, I have to just ignore everything and everyone and stay busy writing or cleaning my house or whatever. Nowadays it's minecraft, thank goodness. We've all noticed it's getting worse as I get older, and I think it has everything to do with progressive nervous system something going on, because I've been dealing with nervous system problems since my 20s. Call it Lyme or fibro or whatevs, I don't care. There's no cure coming and since it's apparently affecting my brain, all my plans going forward revolve around crash control, every single day, any given moment. I'm "brain training". My number one goal is even if everything else fails, including memory, I want to be pleasant enough for my family to handle being around me, so I'm doing my best to brain train every day toward less negativity, less automatic reaction kind of stuff, more blowing off what I don't get right way, letting go of control issues, learning the ways of automated politeness, anything that will stave off regrets with my loved ones.

My mom went down smiling. She was so brain trained from childhood to keep that mask on that 5 years of nursing home staff never had a real clue just how much pain she was in, because she would only cry for us. I'm very different from her, masks come clattering off and I fight for what I need, especially if the world isn't making sense. I'm looking for the happy medium nowadays, learning how to trust other people to take care of things and look out for me. I was often left to my own emotional and even physical survival as a child, so trust is a huge thing for me to learn.

I think there are lots of people out there like me, caught in between the old timers and the younger hipster gen, and we're confused how to be ourselves and be honest without becoming the legendary crabby old person. We don't want to become what others mock. We watch ourselves losing who we were, not sure who we still are sometimes, knowing we're still important but not sure what to do with it.

Well, this is what you do with it. Share what you've learned. Other people still need us to see how to handle the scary stuff. Getting older and surviving crap isn't a joke, and there are other people following us that want to know they're going to be ok going down this road, too, and there's not a soul on this earth who won't.

You're going to be ok. Go brush your teeth when you're scared. Think about how you never see your fave celebrity with sticky teeth and how it would be cool to have lots of money to blow getting mouth swag. Or something else if that's not your thing.

mean is how I show my love

There's a new policy agreement I had to sign before my physical therapy assessment this time. They have so many no-shows and cancellations that they're losing a substantial amount of money flow, and THAT, my friends, is why insurance is so stupidly high. Don't blame it all on poor people and ERs. Blame the people who have insurance and medicare who are purposely noncompliant with care plans.

Physical therapy is hard work. It's not for the faint of heart. I've been there- in and out of wheelchairs, using a cane, needing a driver and assistance in and out of the shower, and help getting dressed. I know exactly what it feels like to be a burden and spiral down a black hole of hopelessness. I'm such a good friend with pain that I actually miss it when it's gone, because I almost get high off of it, even without meds.

It's so easy to take the whiny way out. I hurt. Yeah, join the club. I have a headache. My worst headache lasted 6 weeks and I got at most ten minutes of sleep at a time that entire time, because it was so bad I couldn't even lay down, so I hear ya. It's hard. So is having babies, and that's not stopping anybody. I can't do it. Then curl up and die, you big baby.

That's me talking to my head. I have said all the things everyone else has said. And then I kicked my butt and slammed my head into a wall and GOT TO WORK. I got pissed off enough to get up and do something about my whining.

It was hard believing I could do this. Every morning I had to actually literally SAY "I can do this." Sometimes it was just a whisper in my mind while I cried. Sometimes it was a hopeless defiant shout in the dark. But many times I really did say it out loud on my way in to physical therapy.

Yesterday was hard. I'm in a better place than I've been in years, but it was still hard getting through another assessment and core review. I'm not out of the woods. I can't just flop my body into a chair and pop pain pills when I sit too long. I can't be lazy without backsliding into more pain and disability and eventually major surgery. Yes, I can ask them to turn the pain off and risk paralysis and sepsis and a whole list of other possibilities in a 50/50 gamble, because that's what surgical pain management is. It doesn't fix anything. It actually harms the body even more so you just can't feel it. There's no guarantee how long it'll last, and once it's done you can't go back and undo it. I know too many people this has backfired on. It's way too easy to skip ahead to the last resort and then hear the horror stories- multiple procedures melting down into meth addiction trying to handle pain that simply can't be killed off. Procedures that went well but then catastrophic fail happened after a blood clot in the spine, making the disability so much worse than it was before. Pain being replaced with maddening numbness. Asking someone to cauterize a nerve is such a leap of faith, I can't imagine doing that unless I was ready to commit suicide anyway. My psychologist told me a few times I'm a cynic. That's putting it mildly. I look at it like this- if a surgeon tells me he won't do pain control on me even in radiology with a needle because my history contraindicates success (nice of him to be honest), then I'm going to find another way to live like this.

There is this wonderful program in place to help people who are sinking into quagmires of pain and disability. It's called physical therapy. It's there for just about everyone- medicare is very supportive, and most insurance plans will take the brunt of the cost. All it takes is a person telling their doctor they'd like some help with a specific pain- how to move correctly, how to strengthen that area, how to become more functional around the house. I can say from experience that it's like working miracles, but it takes participation. You can get a whole team of people in on it, and they'll all tell you the same thing- pain shots, PT, and even surgery all work better with regular stretching and exercise, and good nutrition and hydration. You wanna heal? Cut the crap. You don't make a car run better pouring sugar in the gas tank. You don't stick a cigarette in your dog's mouth. You don't give babies beer bottles. You don't pick a fantasy football player who doesn't make the workouts. The logic is sound. All we have to do is apply it.

Several years ago I made a decision. Do I want to LIVE? If I don't save myself, no one else has to. Get out there and GET TO WORK. It made differences nothing else ever did.

I went through a little backsliding the last 8 months, so I'm back in GET TO WORK mode. I'm slapping myself to get up and MOVE, I'm plugging my ears and singing lalalalala when my head whines that this is too hard, I'm gritting my teeth and psyching up and telling myself that actors and professional athletes are where they are because they were willing to work for it. There is nothing in this world saying a writer doesn't need that kind of one on one physical training, as well. Sitting in a chair writing words isn't easy. Anyone who thinks it's easy is an idiot.

I know I sound mean. Sometimes you gotta get mean if you wanna stick around longer for your family. Whining my way to an early grave is unacceptable to me. I've got things to do, people to meet, a world to change...

things that have dramatically impacted my depression and anxiety levels

I know this is going to sound crazy, but I'm a long-time depression survivor, and this is trew.

1- The sudden wheat allergy last year that had me in clinic and 2 ER visits and put me on prednisone for 17 days was a godsend. There's a rumor going around that wheat might be a big culprit in depression. After being completely wheat free for nearly a year now, I can totally vouch for that. I have no idea if it's related to the big Monsanto GMO wheat monopoly thing, but there seems to be some science developing behind it. The severe brain fog I lived with for years is mostly gone, although I still hit walls and have glitchy moments, my memory is getting better again, and my ability to deal with spontaneity and change (I have Aspergers) is getting better again. I don't seem to need as much shutdown time, and I seem more able to steer it now instead of caving to it. I'm not saying the original brain fail was caused by wheat, just that nerve healing (the brain is nerve central) seems to be going a lot faster without it.

2- Regular zyrtec is making it possible for me to drive without delayed PTSD Tourette's behaviors, like tapping my steering wheel because I'm afraid to touch it, or not being able to stop blinking while I drive. I've discussed these anxiety behaviors with a psychologist, because they go back years. I've been rolling down all the windows in the coldest winters over severe claustrophobia while I'm driving, to the point of even pulling out of heavy traffic so I can exit my car before I have a meltdown. I've tried all kinds of meds (highway patrol has driven me home 'drunk' on meds in years past), and all kinds of behavior modification techniques, as you can imagine. (I trigger easily, thanks to being thrown out of a violently flipping vehicle, so it's amazing I drive at all, especially with the pain levels I've had through the years.) Last year I was COMMANDED to stay on zyrtec since my food reactions were going ridiculously more out of control, and I discovered that zyrtec crosses the brain barrier differently than other antihistamines and a regular dose has a very calming effect on me without making me sleepy. I've been able to drive like a normal person and have gotten through a whole winter and a very rainy spring and summer without having to emergency call family to talk me through driving home or constantly send update pix of where I am to facebook or twitter. After seeing such a huge change, I have to wonder how much of my severe anxiety had more to do with a continual overwhelming barrage of histamine reactions than anything. This is not true for everyone.
Cetirizine: actions on neurotransmitter receptors
The Zyrtec Effect
But this may be why it works for me. That's right, they're discovering anxiety (in some people) might be related to histamine over reaction.
Fibromyalgia Trial Shows Promise…For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM and ME/CFS

3- ASTYM treatments in physical therapy coupled with regular chiropractic adjustments have lowered the screaming pain levels on my nervous system more than anything else I've tried in years (and I've tried everything but surgery) and considering I've actually asked a dentist to do root canals on healthy teeth and sometimes think it would be lovely if someone would just severe my spinal cord in at least two places and put me in a wheelchair, my whole life turned around over this very simple technique. Lowering the pain levels dramatically lowered the stress on my nervous system, and that has made dealing with anxiety and depression much easier. There is nothing lovelier than physical therapy where you get one on one personal touch through massage and strength training, which has done me so much more good than medications. At first it was hard because I can't bear to be touched (super aspie + pain syndrome), but over time it became a real life saver. To give you context, it took four years to break through the nasty pain just under my skull because the scar tissue had grown so thick and was creating so much pressure and swelling around my cervical nerves that I couldn't even look up at the stars for years without nearly passing out. The scar tissue was the key- microfissure and slowly rebuild new more elastic tissues, and it works best with regular stretches and exercise. I'm actually sleeping nearly through the night now, after many years of not sleeping more than 2-4 hours through the night, even heavily medicated. More sleep and less pain eases anxiety levels.

I actually owned one of these.

4- I've noticed letting my glucose levels slip up (I'm diabetic) has an almost immediate effect on whether I go into a depression plunge, which is easily masked with meds and distractions that keep me from connecting those dots. Since I don't control with meds (my doctor pulled me off over med intolerance), I must be vigilant and aware of exactly what I'm eating all the time. Since I'm no longer on head meds, I've been able to see how immediate and drastic something as simple as snacking on a couple of cookies is when I haven't had any other food in several hours. My worst anxiety attacks used to come on mid-morning, and after I found out I'm diabetic, it was easy to see the pattern after a typical carby breakfast of cereal, pancakes, french toast, etc. If I don't want to blow the rest of my day on a sugar spike induced anxiety attack and then down a depression hole as my brain and body fold up trying to deal with that, I steer widely clear of anything carby before noon, and only sparingly the rest of the day. I wrote a post a few years ago, Holidays with Diabetes- Easier than You Think, in which I show how a person can still continue to have sweets all day in very small amounts as long as they avoid carb loading, but I've noticed since then that eating like that is like teasing depression all day long until it blows up into anxiety, so I've stopped doing it. If all you had to do to control your anxiety and depression was stop drinking soda and eating donuts and cake and french fries, would you do it? I've lost a sweet amount of weight over it, so I really don't miss 'comfort food' any more.

5- And that leads to small meals. Over time as I've fine tuned my metabolic and chemical default states, I've noticed that even when I watch the carbs, I feel much better through the night when I don't fill up on snacks in general before I go to bed. I've spent years waking up to full blown anxiety out of a dead sleep, and that lately seems to have gotten better all by itself just by not eating after 6 p.m. They say don't eat for a few hours before bed to avoid heartburn and GERD, but it also works for other problems, too. I've been through severe GERD, which can be dulled by continually eating or even just drinking milk, but when you add diabetes to that mix, you can get full blown heart racing in the middle of the night, and then doctors increase your blood pressure meds and put you on more anxiety pills, and as time goes on and on, you become high risk for sleep apnea and dying in your sleep from medication overdosing.
Anti-anxiety drugs, sleeping pills linked to risk of death
Popular sleep medications associated with increased risk of death
Anxiety attacks in your sleep are your body kicking in keeping you alive. If you are having anxiety attacks in your sleep, the fastest and most drastic change you can make is to stop eating before bed.

There are a lot of people on the webs describing their lives with some pretty nasty sounding anxiety and scary depression. I've been there. Years and years of it. I've been a pharmaceutical guinea pig, I know the walk in clinics and ERs like I know my own house, and my family is so good at automatically watching out for my triggers that I feel like I've really dragged their lives down sometimes. My body has become so over sensitive and hyper aware of every little bitty change inside and out that I only feel safe in my own home, and living like this is ridiculous. This has nothing to do with will power and mental illness, but living in a body that can't calm down because I've trained it for so many years to stay in fight or flight response. Well, it's starting to calm down now, and I'm loving it.

I discovered all these things accidentally. I don't think doctors have a big picture yet, but they're working on it. I grew up on homeopathy, and guys, it doesn't work. It's just training your nervous self to compulsively pop more pills or whatever. Discovering I'm allergic to chamomile tea was an eye opener, most people don't even think of that. Anyway, if you want to feel better, get better, have more control over the pain and depression and anxiety blowing up and shutting down your lives, do these things-

-Get a glucose meter and use it religiously if you are diabetic.
-Find a good chiropractor, AND talk to your doctor about physical therapy for the pains that ail you.
-Take advantage of your medicare (it pays for PT) and insurance (they pay, too, somewhat grudgingly, but beats having surgery, which should always be a last resort unless it's a medical emergency).
-Stop lying to yourself about it's ok if you have this bag of chips or that pint of ice cream.
-Reconsider using meds to slap bandaids over what you can be fixing yourself. I don't know about other diabetics, but I get nasty headaches when my high blood sugar comes down too fast, and since I'm allergic to tylenol, I monitor my carbs instead of popping pills.

And the biggest part of making a new Plan is
-TELL SOMEONE. Get other people in on the changes you're trying to make. You don't have a safety net if you don't tell anyone what you're doing. Or keep a journal, write it down, blog it, vlog it, share your experiments, then look back a year later and see if anything has improved.

There is no such thing as instant success. My brain crash was in 2004, my body crashed in 2007 between a slipped disc and a nasty CMV infection on top of undiagnosed diabetes. I made a PLAN in 2008-2009 because I honestly felt like I was dying and nothing was helping, and my life really started turning around in 2011. I finally broke free last year, healthiest I've been in over a decade, able to take care of myself and do my own shopping, control my own problems, but it took a plan with a set of long range goals, a team that included doctors, chiropractor, and psychologist, and my determination that I didn't want to die yet. I was so miserable and my life sucked so bad, and now it's all a nightmare I woke up from.

I was there. Fat, crippled, ugly, and a really scattered mess. Don't blow off what I'm saying.

If you knew you could save your life and be boinging around feeling good ten years down the road, would you do it?

Stop eating that crap. Decide what you want. Make a Plan. Write it down. Set goals. Tell someone. Create a team. Start a new habit of living better one small step at a time. In ten years you will feel better and look better and be glad you're still alive. Even if you still live with depression and anxiety, you might find it easing up because your body is doing better.

Most of all, stop kicking yourself. Doesn't matter over what. Self defeat is the fastest way to sink.

If you are also struggling with alcoholism, I wrote this.

on a scale of ten

Full Metal Pinky

I'm one of those people who doesn't easily identify with a user friendly pain scale. It was invented as a communication tool for patients undergoing medical assessment, and it's actually quite sophisticated in its rules of use.

click to see pic bigger

My challenge communicating my pain level comes in part from enduring so much pain for so many years that even I will assess myself in the 0-5 range on a good day if I'm not doing anything that aggravates it into a more immediate problem. Attempting to communicate that to every doctor I see with a hope that anyone else can help me learn to communicate my own pain better to someone who isn't in my body quickly becomes a dismal jaunt into futility, and aspie me often wants to shut down and not even discuss pain level so we can just move things along. My biggest challenge is communicating relative pain to someone who hasn't lived with continual nerve pain for more than three decades.

Why is this important? When  a person functioning with a nerve injury has a change in pain level that seems microscopic to anyone else (7.5 jumps to 8, for example), it might monumentally affect function around one's home. That doesn't necessarily mean we must jump into new prescriptions or pain shots or surgeries. What it means is that whereas I was coping with a string of bad days, I suddenly started dropping eggs on the floor or something because an arm got so bad I couldn't force it to keep doing stuff, or I started stumbling while I walk because I'm having trouble lifting my leg high enough to move my foot forward. Reporting changes doesn't mean I'm looking for handouts and fixits. I was so relieved to finally figure out how to verbalize "help me find a way to live with this better without me accidentally triggering it and making it worse instead of throwing another prescription at me", which translated to physical therapy and two years of wonderful relief and improvement.

Sadly, once that much improvement is reached in physical therapy, measured as range of motion improvements in mobility and strength level improvements in endurance, there is no 'need' to continue, and people like me can find themselves left hanging short of further improvement because health insurance isn't about personal training. If I want more I must cough up the cash. I can use what I've been taught and maintain at home, but trying to keep pulling $1800 a year out of insurance for preventive care to hold back an elective $50,000+ surgery and all its own months of therapy afterward is unacceptable to them. Next step is pain clinic, with not much more than a 50% hope that a very restricted amount of steroid shots will be helpful and stacks of horror stories in the search engines from people who suffered further nerve damage because of the shots. Lumbar Epidural Steroid Injections for Low Back Pain and Sciatica


Because I've lived with so much for so long and have made it through some really rough years to some much better ones without succumbing to shots and surgeries, I know that the subject of pain relief is very relative and subjective, and that making a mission of seeking pain relief can sometimes backfire. I've chatted with a number of people about their spinal surgeries. Some say it was the best thing they ever did. Some wind up on meth trying to handle even worse pain afterward because nothing else works. Some live with irritating tingling and numbness instead of pain, or develop new mobility challenges like limping. A few wind up back in surgeries for complications, and one person I know of wound up paralyzed and so messed up that years of therapies and consequential surgeries haven't improved his life.

Since I have held out this long enduring what others might never believe they could endure, I feel that caving to pain shots and surgery will be more about genuinely rescuing me from ultimate life threatening damage or actual screaming sobbing pain with me curled up on a floor unable to function without assistance than simply just making my pain go away. By the time surgery arrives, I intend to be thrilled if I wind up paralyzed, as long as the pain is gone. Can you imagine how thrilling that would be for me to never have to feel that pain again? I can see me reaching a level where I'd gladly trade the use of my legs if it really meant that, but I know better- life in a wheelchair isn't a breeze by a long shot, and there can be other complications from increased immobility.


Life is pain. Anyone saying different is selling something. I learned that from The Princess Bride. In that movie the pain scale goes up to 50. If I'm somewhere in the upper 30's, I tell people I'm feeling rough. As I cross into the 40's I might say I'm feeling terrible, and as it hits 45 I'm using the word wicked to describe my pain. If I'm using the word nasty to describe pain, I'm at a 48 on the threshold of 50 and about as close to blacking out or throwing up as it comes. A two or three day nasty level is fairly unbearable, but I once did six straight weeks of 48-50 that allowed me to sleep only ten minutes at a time, and only sitting up holding my head up with my fingertips in specific places. Brain scans were fine, no big problems popping up on the neck radar. MRIs are wonderful for assuring me I don't have scary stuff going on, but they don't show you anything about having an odd viral infection hitting a Lymie right in the ol' nervous system. After getting through that one, everything else I go through seems milder by comparison, even though someone else might find my daily pain level, that I would shrug off at a 3 on a 'good' day, intolerable. (I keep saying I'm holding out for an opium patch.)

On a scale of ten, my pain level today is fluctuating around the 8ish point range. I have moments where it drops into the 7s, other moments where 8.7 goes all 9.3 on me and I spend a hellish 15 minutes trying another trick I've been taught by someone who has a PhD in pain management. On weeks like this I get a lot of work done. I must move continually, distract myself continually, rotate through a pattern of up and about or resting, usually in 20 minute increments. If I don't want to throw up and go into throbbing headaches from the higher pain level, I must monitor everything I do, everything I eat, every move I make, and keep my brain racing full blast ahead of the pain.

I started slipping again over the last few weeks. Stuff got hard, depression sideswiped me, I lost my momentum, and stuff in my head got ugly. And then I found out I'm in new territory now. Things could get uglier. Harder. Dangerous... Time to brace for a loop in the ol' roller coaster.

I can do this. I've just gotta get my baditude back on.

controlled crash- holiday spoonie

It's been years since I've gotten through the Christmas season without being in some level of flare up. I usually get validation in the form of a speckled ANA and 80-90 SED in January or February and wind up on prednisone for a week to knock it back down. I've been doing this so long that I can feel about where I'm at day to day, and in order to avoid an ER trip at Christmas over a solid face plant from doing way too much, I have learned to readjust my days accordingly, slowing down more or letting go of something on the list, until I'm nearly down to a crawl, but still functioning.

I've spent a few Christmases completely nonfunctional and unable to even smile and get dressed without being a huge drag on everyone, so it was easier to hide in my house and cry and try to sleep through everything I was missing. I felt too ill to get into a car to go lay on someone else's couch, and I couldn't be nice on the phone if someone was handing me a million dollars. It's very hard to juggle all the extra social expectations on top of the extra demanding physical expectations the holidays bring. Yes, I've done it all- parent president of high school marching band, a variety of fundraisers, as much school support as I could handle while still working, and eventually had to bail on this and that until I was finally just missing everything. I followed all my doctors' instructions, including handfuls of pills, but nothing replaces rest, nutrition, and common sense. During holidays, all three of those fly right out the window.

Most of surviving holidays in flare up is about balance. People think they have to fulfill social obligations. I realized over time that other people would be shocked if they were asked to be supportive of social obligations if it meant risking their lives. Every time I go into flare up, I am risking my life when I do too much and start crashing. I have lived for years with flare ups, and they don't necessarily kill a person outright, but they do cause harm in the form of wear and tear on tissues, and a person must spend quality time rebuilding that shredded tissue if they want to live a good life. Inflammation from a flare up is hard on blood vessels, the lymph system, major organs (especially kidneys and eyes), and can affect the brain to the point of making terrible mistakes in traffic, and we all know how immediately life threatening that is.

Several big things happen in our bodies to keep our balance. Hormones regulate everything 24/7, special organs continually assess chemical and nutrient levels and send reports to the brain, and the constant feedback is how we stay in a good rhythm every day. We sleep, get up, eat, get busy, eat some more, enjoy something, and go back to sleep. When we get out of rhythm we don't feel well and get jet lagged and cranky. People who live with chronic illness of any kind get bumped out of rhythm very easily, the reports to the brain get a little frantic, the brain reacts with attempts to adjust this and adjust that, but when something isn't working very well to begin with, all kinds readjustment attempts can bump into each other, cascade into a mess, and then snowball out of control. Hormones and chemical levels on blood work look more like a first year programmer failing an exam than an experienced machine that evolved over millennia.

Someone with lupus and diabetes, like me, might feel really good one day. It's the holidays! This is fun! We go on an extra shopping trip, miss a meal, grab food on the fly, stay up late with friends, don't sleep well, feel gross and eat all wrong the next day, push ourselves to keep up, shove extra coffee into our systems, take extra pain pills, and before you know it, a couple of weeks of mistakes have crescendoed into the nasty realization that we are way off course and the only way to fix what's happening in our bodies is to stop everything right now and get back on track, or even get emergency medical intervention. Being exposed to flu or strep on top of all this can result in hospitalization for some spoonies. What a dismal way to spend Christmas.

I have learned to do a 'controlled burn' and a 'controlled crash'.

A controlled burn is like knowing you're going to wreck your day, so you pack for contingencies. I take a lunch box with my own food when I go shopping. I limit myself to only so many hours of activity and then GO HOME. I've noticed 4 hours is about my max, and assume the rest of the day is screwed, I don't try to cook or clean after I get home. If I'm stuck in and out of a car longer than 6 hours, I know I'm going to crash hard so I pre-plan my medication safety net. The key to pills is knowing they do not fix anything and don't give me super powers. They are a bandaid meant to transport me more comfortably to the end of my day, they are not meant to 'cure' or make my problems nonexistent. I have dearly paid for abusing medication to keep stubbornly plowing through life, and I'm on full disability now. I would have been smarter to let go of a few things on my list.

A controlled crash is more of a long-term plan. My holiday stress starts in November and goes for at least 8 weeks through New Year's. After that I'm pretty much in crisis and need intervention. If there were no holidays, the changing weather alone would still impact my life, so I can't just blame holidays. But because there are holidays, I know I'm going to destroy myself, and I know it could get really expensive and depressing to clean all the mess up with doctors and then being stuck at home. So since I know this, I can control just how messy it gets. I can keep plowing stubbornly through, or I can map out a plan with contingencies and loop counters for smaller fails. I can let go of lots of little things and make executive decisions to control my blood sugar and my fatigue level, or I can cast my cares to the wind and spelunk straight into hellish misery and subsequent regret.

We hear people addressing depression and self harm in the form of cutting and whatnot, but we don't hear a lot about depression and freaking ourselves out with blood sugar spikes in the 300s when we reach for the comfort food other people take for granted. And then, if we have autoimmune responses, the inflammation that a glucose spike causes can trigger a flare up, and here it comes, the joint pain, the aching all over, the nasty headache, the difficulty moving around and sleeping and keeping up. And then comes the regret or self pity while our brain chemicals freak out and depression knocks us flat. And then comes over medicating or drinking, waking up with either way too high or way too low glucose levels but we're too depressed and late for work to check, and then comes a nasty morning traffic accident. I know of two morning traffic deaths in the last year directly related to blood sugar levels, both of which left orphaned kids behind. That was NOT a controlled crash. Yeah, now you see what I mean by controlled crash.

Everybody's got something at Christmas. Some people have cancer, some have funerals to go to, some are homeless, whatever. It's normal to go through depression at holidays and feel bad, but we must realize that sooner or later, everyone goes through a really bad Christmas. Or several. My mom was airlifted to a hospital on Christmas day one year. One of my children was in a hospital several hundred miles away on another Christmas having emergency surgery. Other Christmases I've been too ill to shop or wrap presents. So before we start our controlled crash and burn plans, the first thing we must embrace is that part of the PLAN is to plan on depression. Allow time outs for depression.

Normal up and down depression is nature's way of telling us we need to slow down because we're doing too much and then kicking ourselves for not keeping up. Stop that! Plan out a picnic for your depression. Make it a regular date thing. Don't shove it off and pop a pain pill when you've got time to waste a couple of hours. Let go of the world and crash on your couch. A lot of little crashes beats a nasty big one every single time. I have noticed over a couple of years that allowing for normal depression swings has a very positive impact on my more severe clinical depression. Depression, for me, is a lifestyle, so I include that in my self care plan. The key to this working is to let go of all guilt. Guilt is a control mechanism that people and society use to force behaviors. I would never dream of making someone feel guilty if they didn't play the Christmas game right, because I can imagine them crying later if I ran over their feelings and forced mine on them. We see it happen all the time. We also think Christmas day is THE DAY to be with family. What about the other 364 days? Doi. That kind of thinking isn't worth your health, capiche? We love each other every day all year long. Let go of that silly guilt. Enjoy a couple of hours of down time.

-*-*-Side note to caretakers- I know you don't get down time. I was DPA for years for my disabled mother, and my sister raised a terminal child. Find a way to do nice things for yourself. It's ok to ask other people to help you do a controlled crash and burn once in awhile.-*-*-

The next thing to embrace in a controlled crash and burn is forgiveness. If you think something has to be perfect, imagine falling and getting a concussion and not being able to finish making something perfect. Was it worth it? I'm here to tell you nothing brings reality home like a good set of stitches with lots of blood soaking everything. If you think something can't get done without you, imagine this is the year you shock all your friends being the youngest person they know having a heart attack. The world won't stop just because you do. Stuff gets done whether it's you doing it or not. Want to be around to see it get done? TAKE A BREAK. And eat something healthy with magnesium in it. Magnesium deficiency is one of the first things they check for when they do ER tests for possible heart attack. Ask me how I know this. Forgive yourself for not being superman or superwoman, forgive others for not reaching your expectations, and chillax. Just because you didn't die yesterday stressing out doesn't mean you won't have a stroke today over the very same thing. My mom had hundreds of TIAs before the big strokes started. She was right side deficit for years from stress and uncontrolled diabetes.

The next thing to embrace for controlled crash and burn is limits. Set reasonable time limits, glucose level limits, activity limits, and stick to them. I don't know about you guys, but I find it really embarrassing to wind up in an ER on holidays. I feel like I'm ruining other people's Christmas and stressing them out more and I really don't like the extra attention. That alone is usually motivation enough for me to stay on track well enough not to super crash. I've never been hospitalized, even with all my stuff, which seems to amaze a few people. I grew up very independent, raised by a father who still doesn't believe in doctors, and people who see me going to doctors all the time without knowing my history don't have a clue how difficult it is for me to get out of my house and keep trying to find ways to solve my problems with medical intervention. I feel like a guinea pig, I've hated all the tests I've had to go through, I loathe the fear (I usually have to be sedated for a simple MRI), BUT I am very very good at living with autoimmune flare ups and diabetes because I know how everything in my body works. I've known too many people who shrugged odd pain or feelings off and found out later they were in advanced stages of cancer or having severe diabetes complications or suddenly having heart attacks that nearly killed them.

One of the best inventions on the planet is a little tiny flip spiral. You can buy those in packs. Every day I flip to a clean page, put the date at the top, and then write the time when I do glucose or blood pressure checks and every pill I take. Make it a habit. It very quickly becomes second nature, and then you start noticing things. Maybe those two pills shouldn't be taken together. Maybe glucose readings are better at certain times of day. Maybe that headache or anxiety attack or cranky feeling you get starts showing up about the same time every day, and you notice it seems to be happening within so long of certain meals or activities. Or every single weekend. Once you notice a pattern, you can control the pattern. It's very liberating not feeling hostage to chaotic cosmic whim, life going out of control again, freaking out in the wee hours over something. It's very empowering to experiment with data and results over time.

Hence, a huge part of my controlled crash is data entry in a tiny flip spiral. I can tell you that I've missed taking my thyroid pill two days in a row only twice in so many years and both times I was extremely miserable. That alone snowballed several days into a ridiculous debacle, because thyroid has huge impacts on sex hormones, blood pressure, and diabetes. The headaches were out of this world, my heart thumped real hard, and the fatigue crash was pretty scary, not even going to mention menopause symptoms going off the rails. Yeah, two days was all it took for me. And I know this definitively because if a pill is missing in the spiral, I didn't take it. This has been a crucial strategy for me because I had significant brain fail for several years and my short term memory was a joke. I could have caused myself serious harm taking my pills wrong, and many people do. Medical mistakes are more common than you think. Not all prescription pill deaths are Hollywood actors overdosing. Click this if you think I'm being too dramatic. Prescription Drug Overdose in the United States Yeah, don't want that kind of crash and burn, either. You're seeing more and more why I'm calling my way a 'controlled' crash and burn.

I use my little spiral to help me set limits. If I can see cause and consequence patterns, I can control outcomes. If I can see that my fasting blood sugar is over 100, I know better than to eat sweets for breakfast, which starts the cascade for a really bad day with a nasty headache later and feeling sluggish through the afternoon, grabbing more junk and coffee, and then not being able to sleep, which in turn starts the next day off negatively before I even get started. If I have several rough days in a row going off track, I know it'll take a couple more days to get control back, and if I feel a flare up coming on, I know I need to rearrange my schedule for the week or wind up going out of control and calling my doctor. I can glance back through my little spirals and easily spot the days and weeks that went out of control.

I live on this edge in my body every single day, where things can go out of control real fast. I plan my life meticulously. That sounds like a drag, but it's actually pretty easy when I follow a few little guidelines I've made for myself. Take breaks, set limits, forgive myself, and pay attention to what I'm doing to myself. The easiest way I have found to control the cascade is to count my carbs in the first place, faithfully take my thyroid pill, and assume I'll need breaks even if I think I'm feeling fantastic. For the most part this has worked really well, but I still make some pretty big mistakes.

So a couple of days ago I made eggnog. I know I have to stop at 1/2 a cup and no more for at least an hour, preferably two hours. I wasn't feeling well because I had overdone, my brain fell out, and without even thinking I drank 2 cups of eggnog within an hour and popped my one pain pill for the day (doctor ordered anti inflammatory), then fell asleep on the couch. An hour later I woke up in crisis, disoriented, brutishly nasty headache, blood pressure spiking 187/112, weird things happening like one of my arms being ice cold with nasty spiky nerve pain shooting out my blanched white fingertips while the other arm was hot and my hand was bright red like I had been badly sunburned. My pulse was fine and my arms worked fine, so this was more like a nervous system reaction to something, but it clearly didn't seem to be any kind of allergic reaction. I finally thought to check my blood sugar and couldn't believe how high it still was fours hours after the eggnog (I usually go back into the 90s within 2 hours, so I must've gone really high),so I didn't eat the rest of the day. I'm guessing the glucose spike triggered an autoimmune reaction in my nervous system. This is not a new thing with me. Two days of severe headache and other nerve pain later, I'm kind of feeling ok again but dragging like I ran a marathon. All because I drank some eggnog two days ago.

The rest of my Christmas holiday absolutely must be revised now to a more tightly controlled crash. I feel like I'm in flare up now, my energy level is almost nonexistent, and it's up to me to get my team (family) in on not letting me hit the wall now before Christmas. No extra surprise favors from gramma on top of what I've already mapped out, no more exciting hustle and bustle, the plan now is to coast and stay on track with small meals and lots of rest. NO GUILT.

It's easy to forget all this when I'm feeling pretty good. It's easy for my family to forget all this when they see me feeling pretty good. But I've been kinda cranky lately, which is my typical warning sign that epic fail is ahead. I have to remove myself from the game board immediately. I did pretty good this year getting stuff done up to this point, and I'm going to focus on that and not moan about what I didn't get done. Getting 'done' with stuff before holidays isn't worth risking our lives. Capiche?

I've had years of practice. It never gets easier. It never stops being scary. But at least it's not hopeless any more. It's no longer a crazy scary scream ride that I'm clinging wild eyed through. It's more like a merry go round I can step off of and watch from the sides. I don't have to feel sad about it, because I've learned I can still enjoy it while I take a break. I don't have to be involved to enjoy the holiday. I can be glad I'm still here to see it happen.

That, my friends, is a controlled crash and burn. It is my Christmas gift to you if it's still a big crazy ride for you and you are alone screaming through the night on the internet looking for answers and feeling like your Christmas is spiraling in flames. Take a deep breath and put 'tiny flip spiral' on your shopping list. You're about to change your life.

If you're still in the mood to keep reading, I found this forum convo very helpful.

Is Having Blood Sugar in the 400's Dangerous?

This one is more techy.

Lupus and Diabetes
"People with lupus or diabetes – or both – can improve overall health and relieve a number of symptoms just by making healthy choices. A plant-based diet with lots of vegetables, legumes, and plant oils is critical. Adequate rest is also important. And exercise is crucial, both to control weight and insulin levels and to increase energy and improve mood. A healthy diet and a commitment to a treatment plan will strengthen the body and help the immune system return to a state of balance – and will make the treatment plan itself more effective."

One more thing- I can't repeat enough what a difference getting more protein in my diet has done for my overall physical and emotional health. Your tissues cannot heal properly without adequate protein and you will always feel 'off'. Pills can't fix that.

Get that spiral!!! Good luck.