Wednesday, March 21, 2018

The 120 Day Cycle of Blood. Pro's and Con's list of Iron Intake and Side Effects. The Crisis Point Of Low Ferritin/Anemia.

*My blog patterns show that during transitional months or generally around this time, my output of blog posts are higher. It's how I cope I suppose... This post is another addition to my fellow Low Ferritin sufferers. You often search my blog for posts. I hope this adds some validation, knowledge or fellowship to your journey.*

The 120 Day Cycle of Blood:

My Internist warned me the last time we talked in January about the 120 day cycle of blood. With all my reading I actually did not know this important fact. He said, " I know you are trying to convince me that you could take less iron. I understand quality of life issues and we will try it your way. But I can almost guarantee you that around April you will be back in my office needing to be hospitalized. I am continually surprised at your resilience this way, but the body has it's cycles. Would you PLEASE consider the iron infusions (I talk about why that is the last resort HERE.) If not, I could see you needing an emergency blood transfusion by summer."

To which I argued some more about my plans ect. and he replied, "The body has 120 day cycle of blood. Your blood work is ok right now in terms of Hemoglobin you are borderline and not considered Anemic by ONE Point. For the first time in over a year. But your Ferritin fell to a 5, and it is not finished falling. That is an unacceptable way to live. It is tough on your whole system. And THIS is the good news. You are benefiting from the iron input you quit mid November. Around the 120 day mark from the last time you were regularly taking large amounts of iron, you will feel a drastic difference. If I took blood work then you would be considered Anemic and you would probably be at a 2 for Ferritin again. Now let's talk infusions..."

I will readily admit that I did not listen fully. I DID tuck that information away to see how it would pan out. I tend to test what is told to me.
He was right.
He did allow me to propose a reasonable ish plan of moderate iron intake and not to be re tested until the Summer. He smiled at one point and said, "I really do admire the way you live your life. I like how you tell me honestly that you won't do something. Most people lie to me and then just don't take the pills. At least you tell me when you have not. I appreciate your honesty and the fact that you regularly walk on your treadmill, are conscious of your diet, and try to live life to the fullest while having this issue. But at the same time, you can not just ignore it. You can't keep running on fumes. Basically you are the car and you fuelled up years ago, and your car has managed to chug along but it's going to quit eventually. Are you prepared for that? The only thing that would save it at the point would be a blood transfusion if we are lucky and catch it. How do you feel about that?"

Honestly, at the time I felt like I was beating it- I was Superwoman. The iron was in my system from November but I wasn't suffering the quality of life side effects of the pills. For the first time in a year I felt strong. My workouts were regular and I could do more in a week than usual. I began to read again. I could sing. I was sleeping regularly long hours again. Life was pretty good. So I thought maybe my life was turning around. Thus, I stubbornly stuck to my plan.

About a week ago I hit the 120 day mark. My life fell apart almost over night. I could not make it through a work out without all my muscles seizing up. I was no longer sleeping through the night or getting more than 3 hours of sleep. My pain levels went up. I was panicky because I could not seem to catch a breath. My limbs were constantly frozen and my nail beds were purple and cold. My hair was falling out in large, alarming lumps. Stairs were once again my enemy. I was asking my children to grab me things because it took too much energy to get up. It was almost like black magic. Immediately I was different and each day the quality went down a little more.

And of course, it didn't really click until last night. I thought it was because my cycle was late. I blamed it all on women's issues. But my cycle has not been late since November. Being late was also something that happened when I am lower on iron. For the last few days, I was dizzy and out of breath. Yesterday it was so scary, I took a large dose of iron at supper and a couple hours later I felt, if I stayed in bed, that I had a little burst of oxygen. I felt like I was hooked up to one of those lovely nose masks at the hospital. I was craving Coca Cola (I have not consumed sodas or pop in over a decade besides club soda so this was unusual) and rocks. And then it all clicked.

Low iron also causes insomnia ironically. A sufferer can be 'organ weary' exhausted, and still not be able to sleep. I have to admit, that was the main reason I first considered iron transfusions. I read some stories where women said that for the first time in years, they slept through the night. I was desperate for that...but then in November things started to improve so I thought...maybe? Maybe this is the end of a phase?

Low ferritin is NOT a phase. It is cyclical to a point. For someone who can be intelligent, I can also be pretty dumb. It's annoying that I convinced myself of this.

The Negative Symptoms of Taking Iron:
*These symptoms are different for everyone and depend on dosage too. These symptoms are what I experienced on a regular high dosage after charting for commonalities. Many of these are proven on multiple medical resources. This is the Pros and Cons list I gave to my doctor.*

Upsides of Iron:
- Helps the bone weary tired (minimally but definitely helps with breathlessness.)
-Less out of breath after taking it awhile
-Prevents heart attack and stroke apparently
-Less hair loss after time on it
-Slight memory improvement after awhile
-The obvious point of storing Ferritin and getting Hemoglobin to "normal" levels.
-My nail beds stop being purple most of the time.

Downsides of Iron:

- Can grow unknown cancer or add to risks later in life
- Aids in bowel disease/ Can help trigger later bowel diseases.
-Causes Bowel Inflammation (this is a real problem that messes with life.)
-Constipation and Bloating ( to the point of needing outside help. NOT FUN.)
-Panicky feelings at first and suppressed feelings…happens each time. I am either numb, panicky or angry on iron ( maybe due to liver processing) but it is real and it is frustrating. Whenever I am off for a few days I get back to a "normal" range of emotion. This has also been proven on multiple iron forums for many women.
-My family admits I am crankier on iron. This is also due to the sensory overload causing an over run system from all the side effects.
-Stomach pain.
-"Pregnancy like hunger." Or "Diabetic Hunger" pains. High doses of Iron make me DESPERATE for food when it is time to eat. The stomach is more inflamed and hunger pains are more pronounced. I was diabetic during one of my pregnancies. That drop in blood sugar felt similar to what it feels like around mealtime after taking large amounts of iron.
-Gut and liver pains.
-Fatigue (of a different kind from all the symptoms.)
-Insomnia! (This point you can't win either way. The ONLY time when this is not an issue for me is when I am in a 120 day cycle benefiting from previous iron consumption but not currently taking iron. Then, and only then, I get semi regularly, satisfying sleeps.)
- Vivid dreams and nightmares that disturb my sleep which go away after a few weeks off iron.
-Remembering to take it is a problem and stress due to executive functioning which is draining.
-Blurry eyes (that are fine off of iron.)
- Unpleasant taste (metallic.)
- Headaches that ease up when I am off iron unless I am very low and then headaches are a problem anyway due to the lack of oxygen. Really you can't win with some of these points.
-WEIGHT GAIN. The last three times I have tested this - it takes 3 weeks OFF of iron and I do nothing different and I start to lose weight. Happens every time. But I need to get to the three week mark and not take it all to get to this point. And I only lose about five pounds total after.

                                                             The Crisis and Fall Out:

As you can see, I feel better overall off of iron therapy, until my levels fall so low that I'm desperate again for the iron. Off of the pills I have a better quality of life but then eventually my iron drops and my quality of life falls again anyway. I have written multiple posts about this in my Low Ferritin label. THIS post explains the constant Catch 22.

When I actually counted the days down and realized what was happening to me last night, I went into a trance. I put my headphones on and traced the sun patterns on a lamp that was sitting next to me. Repetitively. I didn't realize tears were streaming down my face until I looked up and my whole family was surrounding me. It probably did not help that I was listening to the song, "Where do Broken Hearts Go." Ha. I took my headphones off and explained what was wrong. My son said, "I heard you working out and you sounded horrible. I wanted to tell you to stop. So guys we will have to take turns doing mommy's dishes because it will kill her." My husband added, "Maybe you should stop working out? If you have to drink coffee just to get through treadmill time and you are out of breath, maybe it's not for you right now?" That is when my face crumpled and I full out sobbed. My daughter crooned, "Oh no, I hate it when mommy cries. Mommy and (her brother) when they cry are heartbreaking because they rarely full out cry and it seems so...well just heartbreaking..."

They were all sweetly consoling me. If you have had chronic illness you probably understand why I cried. It is that moment when you feel like life is going good, you've "got this", you finally feel capable. And then it all comes crashing down.

I had gone on the treadmill every day, without fail, other than a few times of sickness, since October. I forced myself to do at least 20 minutes on days that I felt like I could not take another step. I felt accomplished for this discipline. It also improved my mood, blood pressure, and felt like I was doing SOMETHING. To think of giving up the one time of day I felt accomplished, happy and good, was asking a lot. I think I will still walk 20 minutes every day instead of 40 but I will have to keep my pace below 2.4. That is when I get out of breath now, so that will have to be my limit. That is devastating enough. Obviously if I get to the point I have been at before, I won't even be able to do that. I am hoping not to get there. But it seems like it could be inevitable.

I was also crying because I HATE being helpless and in a Catch 22. Those are the worst. I am dreading the next few months. I have to take large amounts of iron again to feel better in 120 days. I have to feel terrible AND suffer the side effects of the pills and not feel the results for months. That is not something I am good at. Yet, I also feel I have no choice. I hate feeling like I have zero choices. But, at the same time, I have to remind myself I DID benefit for January and February, and I did technically choose it.

"Some nights I stay up, cashing in my bad luck, some nights I call it a draw. Some nights I wish my lips could build a castle, some nights I wish they'd just fall off..." I guess I had a couple months of goodness. Sometimes it's a draw...while others, well, it could be worse. Yet, that does not negate the struggle. I will admit to nights re- researching into Iron Transfusions but I just can not see myself doing that without being unconscious and having someone else choose it for me. It's one of those irreconcilable moments we all face in some regards...

I had one book left in a series I was reading...and five days ago I quit reading. That isn't coincidence. When my iron falls, I can barely concentrate on things. I lose interest in most pursuits. I go to "survival" mode. At the time, I wondered what was happening because I NEVER quit the last book in a series I love. In fact, I gobble up books that I enjoy, and especially can not wait to read the ending. I stopped playing 'Snitch' at lunch time with my family. I just sat in the corner of the couch and stared off into space. Again, I blamed it on a severe cycle of hormones. But, now that the pieces are together, within context, everything ties into my blood. If I do end up getting my cycle, that will also worsen my state due to the heavy amounts I tend to bleed. So yay. It is all looking so good right now.

That was sarcasm. To which I have also had a lot of lately. Soon I will not have energy for that either. I know how this goes. I have been here before. (Again, see the bottom label for more.) All I can do in these moments is hold on tightly to what I DO have. Gratitude mixed with reality. I need to face up to reality and do what I need to do to survive my predicament and be the best I can be within reasonable choices, but I also need to remind myself to be grateful for what I have and what is in my life. Beginning with this guy...

I have been there for him, and he has been there for me. I tend to be his rock emotionally and he is mine physically. He likes it when I need him (for some reason.) When my iron is low, he tends to step up his energy level. I am lucky "I'm in love with my best friend. Lucky to have been where I have been...Lucky to be coming home again...Lucky we're in love in every way...You (he) make (s) it easier when life get's hard."

Some people go through this alone. If you are one of those people, please try to find support. Ultimately, know that perhaps hospitalization is a good route. I have managed to avoid it BECAUSE of my support system and my large aversion to hospitals in general...but if you do not have anyone, these times are serious, and perhaps you should consider options that are opposite of mine. Please remember that this is not medical advice but my own experiences in this realm of Chronic Disease. Some of my choices have sucked. Others I am quite proud of. Most have equalled out to neutral (benefits and downsides either way.) In other words, don't make my choices if they do not feel right to you. Find your own way...and hang in there. That is what I'm telling myself, "This too shall pass. It's all a cycle. Try to embrace what you can, choose the better options, grieve what you need to, and BE whom you are AT THIS MOMENT. That is all you can really do."

Songs mentioned: Where do Broken Hearts Go?- Whitney Housten

Some Nights- Fun

Lucky- Colbie Caillat and Jason Mraz

Monday, March 19, 2018

My Canadian "Spring." How I Cope and Keep My Sanity In the Dreary Months. Coffee, The "Unwritten" Perspective, Music and Other Mechanisms.

 Spring has "officially" arrived! Er...Our version anyway. Our Springtime signature sign is that there are patches of brown peeking through the snow. Doesn't it look so welcoming?!? When I viewed this photo, I realized why sometimes people think Canadians live in a "Frozen Desert."
"Canadian man, at your service from the land of the chill. If I can't warm you, baby nobody will...A genuine Canadian man. Strong and free. That's the true north and baby that's me...Well, it's hush hush, while we mush mush, on my dog sled made for two. It's cold outside, but OH! What a ride! to the warmth of my Igloo... Canadian Man, That's me, the icebreaker supreme, Forget your American dream, and wake up to Canadian Man.."- Paul Brandt (*1- This song was played for my Husband's pictures on my Wedding slide show.)

Canadian Weather can be summed up in the eerily accurate pin below. I have used my winter jacket in the summer and I generally don't put it away with the Seasonal changes. We have had snow in July. I think the only month I have yet to see snow is August. But I'm sure we have had that too... On the flip side, sometimes in the winter, I don't need a jacket, but the next day I require a toque, mittens and the cold care works. Our weather is part crazy in a endearing way (like how I think of myself) and quite crazy in a frustrating way (like how most others think of me!) Yet, in all of it's chaos...I still love where I live. I am explaining my weather specifically because I get blog traffic from all over the world...except my home country. I'm perhaps redundant to Canadians? Eh, oh well...
Recently, our snow was beginning to melt, hope was on the horizon, and then we had enough snow to do this:
I captioned it, "Do you want to build a snowman? (*2) P.S. You're welcome- for getting that song in your head:)" And my husband cleverly commentated, "Yes, I want to build a snowman and then I want to blow it up. So sick of the snow." Yes, yes, most of us seasoned Northerners also want to vent our aggression to our current predicament. Usually we have a few Chinooks to break up the winter, but this year the cold lasted far too long. In some ways the excuse to bury into comfort is welcome, but when there is green elsewhere, flowers blooming, and pictures of people in flip flops, it is tough not to want something that is NOT given. 

I have written before HERE and HERE about how Canada's crazy weather builds resilience. There is a stark beauty, a cold, aloof sort of dangerous moodiness that is unique in it's presentation, even though other countries also can get vast fluctuations. Canada is definitely seasonal. 
We enjoy a lot of bright sun. Sometimes the sun is too bright, when it bounces off the reflective snow. I wear sunglasses more in the Winter months. But I LOVE this about where I live although sometimes it makes sense that there is not a massive take over of our country. Who wants cold, drastic weather for more than half a year?  (Apparently I do.) The days I find the toughest, are when the fog or clouds cover the sky and it becomes gray. I can not handle the dreariness. The sun is my fuel. The unusual, regular amounts of fog have been dampening to the spirits. Near the end of February I felt like I was going a little crazy. I craved Spring like a PMS need for chocolate. The song from State Fair kept ringing in my brain, "I'm as restless as a willow in a windstorm, I'm as jumpy as a puppet on a string. I'd say that I have Spring fever. But I know it isn't Spring. I am starry eyed and vaguely discontented. Like a Nightingale without a song to sing...I haven't seen a crocus or a rose bud or a robin on the might as well be Spring."- Rogers and Hammerstein. (*3- This song was my favourite "restless" song as a pre teen. I sang it wistfully out my window. I adored this musical. Ha- Yea, I was not nerdy at all.)

There were weeks in February when the sun rarely shined. I started to feel like Gollum and his counterpart Smeagal. I was having conversations with myself that probably were not healthy. One side of myself was trying it's best to be positive and grateful, while the other side was aggressive, moody and depressed. Before I began descending more into this grim fantasy, I decided that I needed to take action. If we were lucky, Spring would come near the end of April ( in the sense of green grass and blooms), but most likely it would be near the end of May. Which meant that I had at least 2-3 more months of white or brown and a general lack of colour to endure. During that week in February I made a decision. I was going to try my best, to not just get through the season, but embrace it. I decided to view it through the lens of "Pretend this is an all year winter. How would you live if this was your only Season and this was your ONLY story?" I jotted a few coping mechanisms down and used them as a guide, and then I chose to wake up every morning and be intentional.

My ENFJ daughter teaches me a lot about being open, joyful and "poppy." When we watched the movie "Trolls" and then the seasons of Trolls on Netflix, our family was blown away by how Poppy reflects the disposition of our delightful girl. If she is 'Poppy' - I am 'Branch.' Each time I hear the Season's theme song- I smile; "Live it up! Every day you wake up singing. Turn it up! The party's just beginning. All together you and me. Hair in the air. We' re a family. We've got everything we need.  Hair in the air- cuz we're proud to be. Celebrating who we are. Yea, we made it through the dark. Harmony is everywhere..." - (*4) Trolls Seasons Theme

My daughter starts her day singing and brings harmony quite literally. She has alarms and playlists for going to bed, working out, doing chores, doing school work, and waking up. I don't think she is ever not surrounded by music. She is worse than I am. Which is saying a lot, because I have a song for every few sentences I hear or utter. During the day, at home, I will often burst into song, when certain phrases are said or when things pop into my head. I communicate more in song than any other medium. She is louder, brighter, and caters toward more of the poppy genre, but she has taken my gift and multiplied it. Sometimes it drives my husband nuts when he walks in from work and the music is blasting. And I will admit to moments of slight irritation if I have had to listen to the Hairspray soundtrack one more time. But I also understand that music IS a language, communication, and coping mechanism all rolled into a melodious cacophony. We all have our preferences. I decided that I could afford to adapt more of her happiness strategies when the outer world looks bleak. I bought the lame Trolls song...and realized it wasn't so lame, because it made me smile and think of ridiculous happy moments and my "party beach" daughter who blossoms even in the winter snows.

Music has been my first comfort. On days that I forget to put some tunes on or get too lazy to find a playlist to suit my mood, I realize that my psyche takes a hit. I have also discovered that I need to move every day. I love having a treadmill because the weather never stops me from taking at least a half hour brisk walk. I also don't suffer injuries (Ok, I admit I still do but I get LESS injuries on the treadmill.) Where we live, the danger is real. Signs are on hospitals and on buildings to "Watch your step" or to "Beware of slips and trips." I am klutzy anyway, and a leisurely stroll or outdoor workout is not for me in the best of times. Thus, I watch Glee or blast my tunes while I strut on the Treadmill. Without fail, the Glee rendition of "We Are Young" (*5) gives me pep in my step every time. I love the background, the simplicity, the connections between characters and the harmonies.

To cope with colder times, I have also been intentional about food. I am always counting calories and eating healthy due to my chronic conditions and general inability to lose weight, but I make sure that I choose warmth on cold days. I also allow myself, within reasonable amounts, the comforts of home baking occasionally. It is amazing how a chewy, gluten free donut, fresh from my mother's oven, can lift the spirits. I also began building up my low tolerance to coffee in the mornings. Sometimes I can not handle even a cup, but I can now drink a mug of delightful coffee before lunch. This has given me a surprising amount of resilience. I get now why some people have dubbed it "the nectar of the gods." It truly has some mental benefits. "Coffee time, my dreamy friend, Let's listen to some jazz and rhyme, and have a cup of coffee...Greeting time, the music box is beatin' time, it's good ol' fashioned meeting time...Let's drink a cup of coffee."- Natalie Cole ( *6) It is important to note that I do NOT drink coffee every day nor do I consume on an empty stomach (See HERE and for a little article on coffee. And THIS one for a brief menstrual cycle and coffee.)  Vitamin D has also benefited, probably more than song worthy coffee.
I keep reminding myself the summer will come and bring it's own set of problems. Perspective is everything. I have had to ask myself, "What does this season give that other seasons do not?" I have decided to build my days and weeks around what the season GIVES.

I love the lyrics from Natasha Bedingfield's Unwritten (*7) because of the possibility and perspective depicted:
"I am unwritten. Can't read my mind. I'm undefined. I'm just beginning, the pen's in my hand. Ending unplanned. Staring at the blank page before you, let the sun illuminate the words that you can't find..."

What if every day I woke up thinking that it's my day to write on the pages of my life? What if I picture myself as a glorious, sun dappled piece of paper but that I also get to be the ink filled pen? I love the thought of the sun illuminating the words that can not be music.

"No one else can speak the words on your lips. Drench yourself in words unspoken. Live your life with arms wide open. Today is where your book begins...the rest is still unwritten..."(*7)
Obviously, like most good lyrics, this can be taken as both philosophical and literal. For the literal, I often will cope with harsh weather and the doldrums by writing. 'Drenching myself in words unspoken.'  No one else can write exactly what I write (well, without plagiarizing) nor speak the way I speak. That is an incredible DAILY gift! What freedom which enables me to live with my arms wide open to possibilities. A beautiful sentiment.

Another positive about a cold season, is the concept of hibernation. Winter gives a fresh cold and an excuse to be inward. It provides a bit of insulation before the long bursts of dramatic energy that is summer. Our Summers are often spent providing, being outside, and preparing for Winter. A prolonged Winter season can mean more downtime indoors (This Canadian gal does not love her skating, sledding nor snowboarding. But I would still consider myself "a Northern girl. Strong and Free. With Four strong winds to carry me." (*8) but hey, maybe another positive for your lists?)

"I break tradition, sometimes my tries, are outside the lines. We've been conditioned to not make mistakes, but I can't live that way..."- Unwritten. (*7)

Sometimes I allow my sassy nature to come out of it's shell during the long winters. Since I am engaging naturally with less people, I explore the mistakes within myself and allow for more exploration of my gifts, strengths and weaknesses. I am happy to announce that I regularly make mistakes. Many of them I feel guilty for but then I learn to embrace them and the cycle begins again...and it's beautiful in it's own way. Winter protects a bit of this mode.

Since my new mentality, I have indulged in reading more books guilt free (!) to both my kids and self. I started reading Rick Roirdon books. Since I am well versed in myths, I found the books highly enjoyable and am now currently caught up on everything he has ever written. Our family has binge watched shows that we will not always have time for during the Summer. We are almost done "Crash Course World History." Our discussions after have been insightful and fun. I recently learned "Snitch" and I love winning at our regular lunchtime routine.

"Deep in December, it's nice to remember, although you know, the snow will follow. Deep in December it's nice to remember, without a hurt, the heart is hollow. Deep in December it's nice to remember, the fire of September that made you mellow. Deep in December, our hearts SHOULD remember, then follow."-(*9)

Sometimes, a girl has to wistfully dream. I lurk on Spring Pinterest or Flower boards. I disappear into images that are opposite of where I live on occasion. Because imagination can comfort. "Try to remember the kind of September, when life was slow and oh so mellow. Try to remember the kind of September when grass was green and grain so yellow... Try to remember when life was so tender that no one wept except the willow. Try to remember when life was so tender that dreams were kept beside your pillow. Try to remember when life was so tender that love was an ember about to billow. Try to remember and if you remember then follow..."- Josh Groban/ Fantasticks.(*9)

A friend in the States commentated to me recently, "Your house is like a conservatory on the inside, lush and full of colour, plant life and almost like an indoor garden. My home is lush on the outside with greenery all year long and infusions of colours but indoors I have stark walls and minimal decor. We are opposite." In short, that is the biggest way I cope. My home is currently growing oranges, limes, aloe vera, and flowering plants. My other plant life thrives because of our general copious amounts of sun, even on  -45 Celcius days. Thank goodness that seems to have ended! The number one reason I thrive inside, is because I have tried to make our inner home reflect the outdoors in all four seasons, as much as I can while being comfortable. We have bare, white winter trees to hang jewellery, Autumn palette colours, Spring buds, and numerous summer plants (97 was our last count.) Our home was like this before the trendy plant movement, and will be if plants ever (gardens forbid) go out. The furnace or fires are always running, so the fresh oxygen every few feet serves our well being.

 "Release your inhabitations... No one else can do it for you, only you can let it in..."(*7)

When I am desperately clinging to my sanity, I commit (another) social norm "no no." Yes, I release my inhibitions and play...dun dun dun... Christmas music. This is saved only for desperation because otherwise it's effectiveness would be rendered neutral, but I have, in my lifetime, probably listened to Christmas during each month of the year. Christmas songs are my childhood candy. They are like worship songs to believers. I know that many of the lyrics I probably disagree with in theory, but I still love them. Just like I still love me some Amy Grant or Michael W. Smith occasionally. I can re interpret most lyrics, but the ones I can not, still are played at Christmas. I am traditional like that. The songs bring me back to when I truly believed in magic. I DID believe there was a Santa and I loved the concept of Jack Frost tickling my nose because it often seemed he just took a chunk off my skin and left me frostbite. I liked the cute baby in a manger and sparkly stars. Jolly St. Nick and happy christmas trees shimmering beget some of my calmest memories. Beyond joy, goodwill or gifts, Christmas music calms me down. I had a childhood that was full of unknown sensory overload. Christmas was the only time that some of the sensory suited me. Thus, when I am at my darkest, I turn on Nat King Cole's "Chestnuts Roasting on a Open Fire/ The Christmas Song." (*10 and home video clip below) Last week, I had to blast it on the record player while watching my kids frolicked in the snow...and I was able to breathe again.

Today IS where your book begins. Again and Again. On this first day of Spring, what are you going to write in your story? How do you cope with the Seasons of life?

(*1)Canadian Man- Paul Brandt

(*2) Do You Want to Build a Snowman- Frozen

(*3)May as Well be Spring- State Fair/ Rogers and Hammerstein.

(*4) Trolls Netflix Theme Song

(*5) We are Young- Glee ( I think this is better then the original...Sorry Fun)

(*6) Coffee Time- Natalie Cole

(*7) Unwritten- Natasha Beddingfield

(*8) Northern Girl- Terri Clark

(*9) Try to Remember- Josh Groban/ Fantasticks

 (*10) The Christmas Song- Nat King Cole

Thursday, March 15, 2018

Explaining the phrase; "INFJ; If I Cut you Off- Chances Are You Handed Me the Scissors." A Blog Post on INFJ Boundaries/ Fairness/ Accessibility and Relationships .

The first time I read the quote" If I cut you off- chances are you handed me the scissors," I felt like some of my previous relationships were summed up in a nutshell. INFJ's have a high tolerance for conflict resolution and harmony, until suddenly, all it takes is one (seemingly) tiny moment to make them break. See THIS post for more. 

I love to creatively engage in solo material. I make home videos, set to music, instead of large photo albums for my children to look back on. I also share these with a few people in my life. I don't have Facebook or any other social media, besides this blog, for them to have access to. I am VERY private and keep my settings protected with a password.  If I have let a person into my inner life by sending blog posts via email or videos, I do not expect every single one to be read with glee or viewed, but yes, I DO expect occasional feedback or appreciation for my accessibility that was given. 

Accessibility, No Easy Roads to the INFJ, An Instagram Example:

"You'd have to understand how accessible I'm not, to really appreciate how accessible I am to you. Everyone's access isn't granted." The beauty or quirkiness (depending on perspective) of INFJ personality type is that they are protective of their personal spaces. INFJ's can be 'over the top' giving in their relationships, but they also are not easily accessible. They will SEEM open in public and perhaps come across as an easy acquaintance on first meeting, but it takes a lot of time for someone to be granted in their inner circle.

"INFJ - I closed off all easy roads leading to me. But I'm reachable if you're wiling to go the extra mile." 

As an INFJ, I have had an Instagram account where I only allowed 23 people to witness my life. I constantly rejected requests. I used Instagram personally, like a mini blog, to talk about struggles or triumphs in the caption under the picture. Over time 23 people was too many. So I cut my list down. It was more about the way I work in the world and not a hate action towards the people I cut. Beforehand I also wrote a post asking anyone who did not feel completely comfortable with how I use Instagram to stop following me with no hard feelings. Three people, including my cousin, dropped off. Eventually my list went down to 14 people. I would have been comfortable with about 9, but at the same time, I was grateful for the 14 who gave to me as much as I gave to them. I knew they were people who would not give my information away and would also leave occasional feedback or share their experiences. I value this reciprocal sharing in the forums that maximize my language. When people actually honour the way I communicate with loyalty, occasional feedback or reaching out once a month to check in one of my favourite spaces, I am also aware of going the extra mile for them. I will honour their reciprocity to the best of my ability.

Maybe it sounds harsh to other personality types? But it is important to know the larger context of an INFJ, which you can find HERE.  INFJ's also struggle with their own continual guilt patterns. Melissa wrote HERE, "The INFJ mind is very good at coming up with reasons we should feel guilty. Our Introverted Intuition seeks out patterns in our own behaviour. Our Extroverted Feeling picks up on how we make others feel and evaluates our actions in light of how people “should” be. Our Introverted Thinking is quite happy to analyze our faults to death. And that pesky Extroverted Sensing adds even more guilt by whispering that all this shouldn’t matter and we could just go have fun."

INFJ's Do Not Just Give Their Time to Anyone:

INFJ's are complex, private, contradictory, highly empathetic but boundary minded, and require a ton of space. Which is why, when an INFJ actually DOES take the time to check in via email, text, video, blog post or whichever medium they regularly feel comfortable with, IT MATTERS. You should know they don't just do this with anyone. If you are on their "list" you MUST have done something in the past to traverse through a few of their initial layers. Their inner circle may just be 6 people, but their secondary circle or even last circle is an honorary place to be. 

The Circles of an INFJ/ Earning a Place in the Inner Circles:

To put this into perspective I will try to give a fluid yet concrete example. This is simply a brief picture of what this looks like for an INFJ, but it's a little black and white;
Let's say there are about 10 circles that ripple out from my INFJ rock skipping over the waters of life. Anything outside of the ten is the rest of the world, brief acquaintances and obligatory grocery store hello type of relationships. The tenth circle is reserved for light acquaintances, and from there it goes inward. My first circle would involve my husband and children. Second circle would be my bestie- close to my first circle. Third circle is larger with about 15 people who have proven over and over that they deserve to be there. They get some of my secret forms of communication and occasional access to my first and second circle information. Sometimes a person CAN move out from my third circle to my tenth or one of the others, but it takes a lot of neglect on their part to get there. 4th circle can involve some extended family members but I would say that would be mostly my 7th circle. I send videos to a combination of people that are involved from circle one to circle 8. I feel this is generous and also inclusive. Just because I have not talked to an aunt in over two years, does not mean that I will not include her on my list, because the nostalgia of how she shaped me puts her in circle 8. 

Again, that example is a little too black and white, but it does shed light on how inaccessible INFJ's actually are. A balanced INFJ will not be a particularly social one. I do know INFJ's who are surrounded by people. I used to be one of those in my twenties. This is because INFJ's do love the CONCEPT of people and wish to help the world. But boundaries are their balancing core, and many INFJ's struggle with implementing them. Once an INFJ learns about boundaries, they can come off as selfish to those they used to give to. But they have realized the truth that it is less important to have a large circle of people and more important to have a few true friends. 

Years ago, I would give my time weekly to a group of friends. I gave my attention that could have been given to my children, my stuff which at the time was limited, gave heartfelt notes, and actively tried to speak the language of each woman in my circle. Some took advantage of this and became angry when I stopped giving this attention due to illness and a difference in priorities. I understood that it would feel like a betrayal, and in some cases I explained. But generally explanations made it worse. When I found out that one of these close friends did not like reading the emails or blogs I sent, but yet she told me, "I value talking to you and want to hear all about your life." Well, that didn't fly with me. She knew me well enough, and I stated in previous conversations over the years, that I expressed best in writing. I gave her a window to my life, via those written words, which is how I shared the deepest parts, more than in conversation. Thus, I realized we were speaking different languages, and when I stopped going over the top to speak hers, she didn't bother meeting me HALF WAY. I knew, without a doubt that for years I had met her on her turf a quarter of the way beyond the half way point. I stretched myself past what I found natural, FOR HER. But that was never considered enough. As soon as I stopped she became resentful. She thought I was asking too much. I was asking for a basic level of equalization. I don't resent her expectations and realize they were partially my fault, but it was time to let go and cut that tie a bit.

Her expectation of me being a certain way is akin to telling someone you love them, when you never listen to them or value the way they are in the world. That is not love. A relative once said to my husband, "I love you." My husband told me later, "That is not love. What they mean is that they think they love me. But if they actually had love towards me, they would not require me to fit into their sliver of being and judge me harshly if my personality moves beyond that. They would allow me to be myself while being beautifully their own. They would disagree sometimes, of course, but they would not hold me to a false version of self. Telling someone you love them, when you give no effort to speak in their love languages, feels intrusive and unkind. It becomes more about you than about them. That is not true love."

I understand equalization means different things to different people. Also life can not be 50/50 even in relationships. My husband and I have a healthy relationship, but through out the years one of us will try harder than the other. We take turns being the stronger or weaker one...but we also try to meet half way as much as we possibly can. Friendships are varied and have lesser expectations. But they do become a problem if for a decade, one person is always reaching above the 80 percent mark while the other person is comfortable giving 20.

"INFJ- I still love the people I have loved, even if I cross the street to avoid them." 

To many, my above statements could be perceived as bitterness. I laugh at this because, as the few in my inner circle of people can attest to, I am the LEAST resentful person. First, I barely have a memory to hold on to transgressions in detail, though I will remember the emotions involved. Second, I realize that every person that has wounded me deeply or moved from an inner circle to an outer one, is still a person that I LOVE. How can that be?

INFJ's are quite connective. Even with our Doorslam, we think on the person who has abused or misused our trust, and we still see their good points. We almost ALWAYS, without many exceptions, UNDERSTAND why a person does what they do or how they are who they are. This is because of our perspective taking driver and gut intuition. Which makes it hard to hate anyone. Even most criminals. A fact that baffles other personality types. How can someone who has such ethical, perfectionistic tendencies, stick up for or explain a hardened criminal? We are contradictory in our natures but it is because of our understanding that we can not hate for long. 

We can become angry. It is also true, that at our core we are sensitive and mushy. We can occasionally Door slam (which is different from subtly cutting someone off. A Doorslam is usually permanent. Cutting someone off is more of a distance mechanism with the ability to re consider if approaches change or life changes.) But most often, we will simply move someone to an outer circle with as much kindness as possible. It is only when they continue to demand more, that we start to shut our door. I have crossed the street to avoid people. I dislike chit chat in general, and some people wounded too much without even realizing, to give a conversation to. But I know that I also love them. I will forever appreciate their previous roles in my life. Whether they were a tough lesson to learn or someone who just drifted naturally away. I believe in giving dues and I know that each person is worthy and contributed to whom I am today in small ways.

Time Boundaries/ Graciousness, and Selectivity;
If I invite a person over, it does not come lightly. I understand busyness, especially in today's world. I avidly protect my time. But I also believe, if someone is valued, they will be given time occasionally. It's about priorities. I have a limit and can recognize when I am not a priority. If I try to accommodate someone at least three times, move my schedule around to get together with them, after multiple cancellations, or if they continually come an hour late or do not text me till hours after they were supposed to arrive...I will reach my limit of graciousness. I may try two or three more times, within a year, to invite them over, but if the same patterns happen again, I will cut my losses. I will not bother anymore. Obviously, my time is not important to them on a larger level which is ok, but then I can apply the same rules... or they do not deem getting together as a priority. That is an allowable boundary on their part, but it is also okay for me to be more selective in the future.

My husband often teases that I have exceptionally high standards for the closest people in my life. This is true. But part of this is because I am quite happy alone for the most part. I love being a hermit and if I give my time, it is usually some sort of sacrifice. I hold myself to even higher standards. Yet, I also know the pitfalls of perfectionism. I make sure I am accepting of my flaws and others. I tend to give more, in the ways that I can, then I take. I also know I am a handful. I am ok with that and admire the people who accept whom I am within reason. I try to stretch myself too...

The INFJ Need for Protection Instead of Validation:
It may seem that I am looking for constant validation. If that were true I would have 1000 followers on Instagram or promote my blog in larger ways. I would accept anyone who asked for my attention. I would send my emails to the more than 100 addresses in my book. I would take the offers of blog promotion or guest blogs. I would be phoning people or continually inviting them over. "INFJ's are far less interested in validation and are more interested in protection. They don't need you to agree with them, they need to know you're not going to hurt them, even if the fear of hurt is deeply unconscious." When it comes down to it, I simply am looking for people who will value and protect my space or personality with all it's weaknesses and strengths, and allow me to do the same back.

Another part of this equation is that INFJ's can sense people's moods. Even over the phone. We know when we are being lied to but we won't say anything because we value each person's journey. We understand that if there is a lie, there is a reason that is not for us to explore, unless it is one of our first circle people. Thus, healthy INFJ's cannot be surrounded by a bunch of people. They will absorb too much moodiness and human emotion. They need ample downtime to decompress from the best of situations. Thus the strong boundaries.

If we cut a person off, they have inevitably handed us the scissors. We will think through all the reasons why we should allow a person to stay. We will consider the differences in personality, upbringing, environment ect. But then all of a sudden, there will come a moment where we realize "They just handed me the scissors." Usually it is significantly small compared to the many moments that were larger leading up to that moment.

The Final Straws, 'Once Upon A Time' and 'This Is Us' Analogy:

An frivolous example of this, would be my usual T.V. shows. Sometimes I get into a show that I regularly watch, only to be let down week after week. Yet, I stick it out, hoping for redemption. In some cases, I am glad I stuck it out. For instance with Glee or Once Upon a Time. But in other cases, there comes an episode where I find my final straw. This happened with "The Fosters" and "This is Us." With the Fosters, the drama became too dramatic over time and crime centered. With "This is Us" I began feeling manipulated by the writers in the second season, frustrated that the story lines were becoming less about comfort during hard times, and more about giving sad stories constantly. My final straw was the Second Season Finale. After some digging, I found THIS article which I was in agreement with. Next year I will not be tuning in regularly, although I may binge watch on Netflix and see if it redeems itself later. "This is Us" writers handed me the scissors, after a continual push of emotion, and a lack of the counselling aspect that was present in Season One. Of course, in writing, shows and in people, there is a natural level of maximizing moments, adding music to push emotion, or using words to make a statement. But there is that fine line, when suddenly the natural magic of creativity becomes control.

I cut the cord with shows, and I cut the ties with people if I feel like I am being controlled in some way or manipulated to tolerate what I normally would not, I will "rebel." "Controlling an INFJ will lead to mutiny in all it's forms."

The Natural Ebb and Flow of Relationships:
In life, there are natural years when we become closer to certain friends, and life takes us on another path, and we re join each other later, or walk away. This is normal. I allow for that ebb and flow. Most INFJ's are quite understanding about different moments, or years in life. I have had a friend since I was 12 who has had years of being close to me, and years when we text maybe twice. She is still in my closer circles. I still share information with her to keep her up to date. Because the years have proven that we come back to each other, over and over, in various ways, she is an honorary member of my closer circles. We both are Introverts and we value our space. Yet, we also love deep topics. She has spent New Years and Christmases with our family, but then gone years with barely any contact. It's how we roll. I have never considered her a person who has handed me scissors. I knew when she was struggling and needing space. I knew that when she had boyfriends she would not keep in much contact. That's normal. She knew when I had young children that I would be too wasted to give much time. She knew when I was dealing with my husband's depression that I could not give anything outside of the home. We are considerate of each other. We also know, on a deep level, that we pull the magic out of each other enough and not the madness. We make each other better for the most part. That matters. So you see, handing me the scissors is way more complex than a season of drifting or occasional neglect or normal mistakes.
No Need to Explain:

I used to try to give more explanations to people of why they were cut out of my life. In rare occasions, I will still try to extend a kind explanation if I sense that a person is in a vulnerable state but they are still too toxic to be in my space. In this circumstance I want to cause the least damage. But mostly, I have realized explanations make things worse. Distance is best. Luckily, chronic illness has come in handy for this. I use it as a legitimate excuse. Which it is. It's a truthful way of cutting out people with the least amount of damage. I honestly do have less energy, even as an INFJ with my time because of chronic illness. My time is even more valuable. Thus, if people are handing me scissors I can put them off and if an explanation is asked, I now simply say, "With chronic illness I just can't give the way I used to." And I can't. Even to the people who have deserved every bit of my attention. If I can give - they earned first rights. 

"If other people do not understand our behaviour- so what? Their request that we must do only what they understand is an attempt to dictate to us. If this is being "irrational" or "antisocial" in their eyes, so be it. Mostly they resent our freedom and our courage to be ourselves. We owe nobody an explanation or an accounting, as long as our acts do not hurt or infringe on them. How many lives have been ruined by this need to explain, which usually implies that the explanation be understood. Ie Approved. Let your deeds be judged and from your deeds, your real intentions, but know that a free person owes an explanation only to himself- to his reason and conscience and the few who may have a justified claim to explanation."- Anonymous

The few that have a claim to justified explanations, deserve them. The rest, just require space. The same rule applies to self. I make sure, if I am making claims on someone, that I am in a justified position to do so. Sometimes I make the mistake of assumption. In those circumstance, it will take me awhile to adjust to my new role, but I will adjust. That's life.

The True INFJ need In Relationships- Protection and Home:

At our core, INFJ's reveal ourselves in layers. If we sense a flinch to whom we are, we seal off access to that part of our soul. Sometimes we give multiple chances, others we are done off the bat. We are open to people, in the sense that we are open to humanity. We give advice and most of our conversations can seem deep. But to truly share our inner lives, our quirkiness, our dark sense of humour, our odd connections and secret loves of need to feel like HOME. Home involves, first and foremost, an element of safety. 

Ten Actions that May Cause an INFJ to Get out the Proverbial Scissors:
If you handed the scissors to an INFJ you most likely did one or more of these ten actions (although these vary from person to person but these ARE ten attributes most INFJ's agree upon):
1.) You Bullied. Or you pushed an agenda they can't get behind, over and over.
2.) You spoke harshly over and over about those they love.
3.) You asked for more than you gave, over and over again, in most areas of life.
4.) You dissed something that was a core of who they are. For myself, if someone completely disregards a subject I am passionate on, this will help lead to a cut off. I don't mind if they disagree but if they hate on something I love regularly, even though they know it's important to me, that becomes a problem. Like my unreasonable love of Glee, or my Autism diagnosis or engagement with personality types ect. There are some things I share that are core to whom I am, and if it is met with derision more than once that is not friendship, it's an acquaintance.
5.) Judgment. Whether spiritual, religious, racial, ect or any form of intolerance or cruelty. We will not tolerate this well, on a regular basis, even if it impersonal. A contradiction I know.
6.) A requirement to be the same and not allow for quirkiness or individuality.
7.) A non consideration of the sacrifices or time. Constant complaining or an inability to even partially understand differences. In short- Ignorance.
8.) Lack of individual freedom.
9.) Inability to understand intuition or receive guidance.
10.) A general lack of respect for time given or gifts given and then judgments made without the slightest consideration of reciprocity or equality on a sliding scale. But we see you are capable of respect, equality or reciprocity and know it is not because of a lack of understanding. Social status climbers especially can be guilty of this and we will cut off a tie quickly if we feel we are being used.

The Benefits of an INFJ Friendship/ Fairness and Contradictions:
Most INFJ's make valuable, loyal, quirky, insightful and dedicated friends. They will give honesty where it is lacking, compassion when it is needed, kindness even though they are not given the same level back, firmness when a boundary is required, intuition and guidance for core moments, and an interesting perspective on life.

INFJ's are not easily acquired in friendship or in life. They may have a few high standards, but they apply these fairly to themselves. If they cut you off, you can be guaranteed they thought of your position in depth. They applied understanding and knew what would be your defences if you spoke for yourself. They probably gave a few hours of fair consideration. They probably even gave some unwarranted chances. Or maybe they simply had enough? We all have our limits, INFJ's are usually clear about their boundaries within behaviour. If they withdrew, you probably crossed one.

If you put up with their quirks, mistakes and neurosis, it is a guarantee that they will repay you in spades. Either in loyalty, gifts, unusual advice or creating beautiful safe places. You know that you are valued if they include you in their process. They do not do this with just anyone. You KNOW you are loved if they text you occasionally first, invite you over occasionally or take time in some way or form at least a few times a year.

My husband stated on a recent drive home, "I will never be as fair as you in relationships. I will never have as high standards either so I guess we balance each other out, but you are fair even when we fight. I know you consider me as much as yourself. Being fair is a gift you give, but life is not always fair, which I know you know, and I guess makes it even more valuable that you strive to give fairness where you can. If you are calling me on a behaviour, as much as I cringe or hate it, I know deep down you are most likely right and have given a lot of thought to bringing it up." When he says statements like that, he provides even more reasons, that in his case, proverbial scissors do not even exist. There would only be one exception when they would surface, but otherwise, they are not even an option. Some relationships need to thrive on dedication. A contradiction? Perhaps...

Song Choice: Girl on Fire- Naya Rivera Glee

Tuesday, March 13, 2018

About Rare Sensory Deprivation In Autism. AKA Robot Mode. About Inclusion Pressure.

This was originally supposed to be part of the Sensory Link Blog Hop. It is hosted by the Sensory Spectrum and the Jenny Evolution. Unfortunately, my link and html codes are bing wonky and caused my blog to host pictures on the wrong side and my font went crazy. I had to re type this post. Here are two post links involved this month:

I have explained sensory overload in posts or aspects of sensory sickness, but there is another side of the sensory coin. Our family has dubbed it 'Sensory Deprivation Robot Mode.' My children have had lesser versions of it. This mode can be accidental or intentional. I can cause myself to go into this mode when something requires my full attention or when I am enjoying myself or when there is an emergency that pulls at my focus. Usually four factors have to be involved to access this automatic pilot of mine.

4 Factors that Help me Engage in This Mode  (when I intentionally wish for it by CHOICE) Are:

1.) Having an activity that lines up in my obsessive interests which requires a chunk of time. For myself, decorating, writing, making videos, deep cleaning ect. fit into this requirement. There are also activities like shopping that I do not enjoy, where I force myself to shut down a bit to get it done. This is another form that is less fun, but enables me to do the job efficiently for short periods of time.

2.) I need at least enough sleep to muster up this obsessive state in the first place.

3.) I require a stable stomach. I am not able to do many activities if my gut is off.

4.) Sleep and my wake up routine need sufficient honouring. I need to be able to wake after a decent time.  THIS ARTICLE  states that some people need their sleep in the morning. I am one of those people.

If these 4 points are met, I am able to shut down my extra sensory for SHORT periods, to an extent, or more accurately, my body just shuts down on it's own when I am in an activity that is obsessive. I now try to recognize it and make it work for me.

An Example of Going into Sensory Robot Mode:

Last spring, I helped set up a new shop a drive from where I lived. I had always wanted a shop of my own, but after the experience, even though it had it's moments, that desire has been squelched. I witnessed and aided with inventory, wholesale merchandise, vendor finding, setting up and moving product and shop design under a minimal budget.

On the morning of opening night I arrived to find the shop in disarray. The shop was located in two large garages opening to the outdoor space. One garage was stuffed while the other had not even been set up. Because I had ended up in ER the day before due to an allergy to some soaps, I had to leave a team of volunteers, who tried their best but were not gifted in this area. I had six hours to set up BOTH shops in a way that worked. Because of my allergy, I wore surgical gloves and my body was covered from head to toe. There was no air conditioning. Red sand blew in on the cement floor when a light, desert ish, breeze would pick up. People were sweating amongst the Hoodoos in tanks and shorts. The arid wind blowing across the sandy coulees created quite the dry heat. And I was dressed for pre winter.

Luckily, I had my children, mother and aunt to aid me. I began immediately barking out orders due to the time crunch. Items still had to be priced, entered in inventory and set up. I delegated, then entered my own world of quick efficiency, because my team was doing what I asked. I did not surface until my mother forced me to eat at 2:40 after the team had eaten and brought me back something. I had not gone to the bathroom, eaten or drank much at all (which is a mistake that I seem to always make.) I quickly wolfed down my food in an air conditioned car, because my mother forced me to, and then I was back at work. Both stores were set up 15 minutes before they were opened.

My aunt called me a "Tornado." My husband says I am a whirling dervish when I know what needs to be done. I am quick and don't stop moving until I am FULLY finished the task at hand. "Ain't nothing gonna break my stride...Oh know, I got to keep on moving!" (*1)

Looking back in the car ride home, I realized I had not registered the plus thirty Celsius temperature that was accentuated in the Valley. I didn't realize my shirt was soaked or that I was overheated. Which is an unfortunate aspect of this Sensory Mode. I began to feel all the muscles I had used. I felt thirst and my inner organs rebelling. I felt the exhaustion of Anemia/ Lyme and the Mono I was fighting at the time. I had pleasant thoughts of a fluffy bed in a dark, cool room and a dripping IV (well, only the thought of instant hydration and not the actual IV process.) My legs were trembling and my hands visibly shook. I could not even open my own water bottle.

After I have shut off my sensory process, and it all comes tumbling back later, it can be amusing to go from incredible feats to the sudden inability to open a container. It blows my mind, so I can not imagine how it must look to anyone who witnesses the process. I must look like I am acting. (*2) My voice went from raspy to an inability to speak. I couldn't recall exactly what I had done but I knew it was good considering what I had to work with. I knew the next day I would not be able to get out of bed. I would need to crash.

Crashing involves regulating my body temperature by crawling into bed with no sensory stimuli. No TV or any noises are allowed. It involves a dark room with silence. Sometimes, after an hour with no sensory stimuli, I can chat or watch a show. I am often in pain or feel like I am coming down with the flu, if I have stretched myself in a temperature de regulating way. At the time, I was unaware of these factors. I just had a job to get done.

I prefer entering this mode on purpose for something less demanding, like writing, or decorating for short spurts. But sometimes life requires me to shut down just to get through. Which I dislike, and I try not to do often, or sometimes do not even realize I am entering this mode, until way later. My family has learned to help bring me awareness because at times it can be dangerous for prolonged periods. If I enter this mode intentionally, I usually set a timer or tell another person so that I will be pulled out of the activity at a reasonable time...because I could probably forgo the bathroom all day...which isn't something that is good.

Sensory Deprivation Robot Mode Summary:

This mode is when my brain, intentionally or unintentionally, ignores the sensory stimuli it is normally overwhelmed with. It is like I have pressed a button and become the opposite of what I usually am. If it's intentional, I have to pace myself. I can only sustain this for a few days at the very most, but afterwards I am typically sick, if it involves being physical or out of my home.

Those who witness this process are often perplexed. My husband realized long ago, that if I intentionally enter this mode, it is important to honour it. Even if I seem unreasonable to a degree. Sometimes, it is nice for me to get a lot done, in a short amount of time, and not be overloaded with the usual stimuli. I like looking back at what I accomplished without some of the usual human need components getting in the way. I know from feedback, that I can do in a day, what some people do in a week in this mode. It's like a superhero button on my functioning, when it's a choice. My husband calls it part of my 'Athena Mode.' I like feeling capable sometimes because often capability is not my forte in the physical realm...due to Dyspraxia and Chronic Illness. Sometimes it is nice to occasionally succeed in area perceived as weak.

My mother texted later that evening;
"Your aunt said that after Tornado K the store looks great. She said she was amazed, flabbergasted, appalled and in awe that you got all that done. Using her words. She said maybe it is good thing you are sick because who knows how you would be if you were not. She asked me, 'Can you imagine? She is a tornado! Talk about amazing. She could conquer the world if she wasn't sick.' Needless to say, she was impressed with everything you did. She said she was stunned you got it all done. She said that was so much work, especially when a person is sick."

I was happy she noticed. I have been sick since I can remember. Coupled with sensory overload and multiple disabilities life can get tricky. Plus, I had Mono at the time. In my life, I have good days, normal days and more often than not, very bad weeks. There are many factors that play into the normal day to day but for a person with said conditions, these factors should be multiplied by ten at least. Thus, I have always had the mentality that if I feel good, I should savour it, do what I enjoy and occasionally I chose to embark on something that is a huge undertaking. At other times, I shut off to survive. I prefer the choice factor.

I used to make the mistake of entering this type of zone a few times a week. School required me to be in this mode almost every day. It is a wonder I did not skip as much school as I did. After school, it was a NEED for me to have at least an hour of chill time alone in my room, decompressing and healing with music, sprawled on my floor entering a dream like state. This mode should not be a regular routine. For one, it can be dangerous if a person is unaware, but for another it still requires payment later. I prefer the lower versions of this mode that are simply "being in the zone" but in a safer environment, like my home, where I can engage in changing a room around, writing or making a video creatively without too much damage. Even if I do disappear into my own world for hours. In this case it is sort of like being lost in a book.

When I am in these zones, bodily awareness does shut off. Thus, my husband will often ask, "Have you eaten today? Drank? Gone to the bathroom?" I barely acknowledge him, and he tells me he leaves and comes back 15 minutes later with the same gentle encouragement to take a break. For myself only a few seconds have passed in my mind. He also is aware of my body temperature. I will not notice, even if I am actually in pain from being frozen, that I am cold. Or if I do, it will be a nagging feeling in the back of my head that I have no idea what to do about, until my husband puts a blanket on me and exclaims, "Babe, you are like ice. At least put on this sweater." I will look up blankly, apparently with eyes unfocused, murmur, "ok thanks," and get back to my work. His chuckle will barely register in my brain as he walks away, but later, looking back, I will remember and register that detail. When I am out of the zone, I become appreciative of his gestures. My daughter has told me, " Mom, I know that the only way to get your attention during these longer blocks of time  is to either play music you like or be extremely nice and talk an octave higher while playing with your hair or gently rubbing your arm. Then you will look like you suddenly came out of a trance. You will be surprised I am standing there and ask how long I have been waiting. I find it funny." (I do not do this if there is an emergency requiring my attention.)

My family generally respects the time I spend in 'Deprivation Mode.' They know I will get cranky if I am pulled out too soon. They know that everything I have deprived myself of WILL catch up to me, so they do keep an eye on extreme behaviour, but allow me to do what I need to do. They also realize I will have a 'useless' recovery phase but what I do during DM more than makes up for that. My son has told me he likes it when I am in recovery because we can chat, read or watch TV together.

When I do show up, in a way that requires a lot of energy, I want people to recognize the feat. I want the world to know that just because I am disabled or sick on many days, that it does not mean I can not occasionally show up and accomplish what most would do in a work week, in one day. Hubby hates it when I say, "Ok Time to work!" This was especially handy when we were doing Renos. He knows what I can do in a short time span, will require him to step up his game, and I will still beat him, time wise. However, he does the day to day work I could NEVER keep up with. His job would be my death and I would cry within in hour.

In Summary:

The day after setting up shop, I could not remember details of the previous existence. I recalled a few shelves I re arranged. I remembered the comments to my amazing children of, "Where did you learn to work like that?" And they replied, "When mommy gets in this mode, we know we are required to be fast, efficient and give our best. She will reward us. We know to take breaks." I remind them before a big task, to take bathroom and drink breaks. They are not supposed to even ask, just to go fill their needs, because I may not respond. I think that is another reason why the early years, of them being under six, was so hard because I could not do this. I had to force myself to be hyper aware just to be a present parent. It was exhausting and demanding and not my natural way of being. Now beyond six we have found our groove for all our varied needs. They know on big chore day, grocery shopping, or seasonal changes (which usually take a few days of moving furniture and product in our house while deep cleaning) that they are required to help without complaint. They know they will be rewarded somehow. They tuck in through the storm because the more I am interrupted, the longer it will take and the crankier I will get.

Occasionally, I appreciate 'Robot Mode' because of what I can look back on and see accomplished. It feels like it makes up for the days I can not do much of anything. If I am unaware I entered the state, until I look back later, I can feel guilty or upset. But when it is a choice, unlike most sensory overload, the intentional deprivation can be a nice break. I may not hear my body's needs during this time but sometimes that is a welcome relief. I am constantly in dialogue with my body's overdrive, exhaustive, unique needs. It is nice to be able to shut this down while I get something I want to do, done. For a few hours I will feel almost 'normal' in what I can do in comparison to our unbalanced "get er done" culture.

I believe my way of being teaches different lessons. I perceive different truths by being limited in some tasks. I make differing life choices because of this. As Temple Grandin says, "Different not less." My experiences are valid, worthy and most of the time, I would not trade them in. There are occasions that I am appreciative of the word 'capable' in a physical sense, but I don't want the word 'capable' to become something that equalizes me to the rest of the world. It would be too hard. That is not inclusion or equality. It is having a high standard that makes those with disabilities feel even more pressure and inability or inner stress. I don't want the same opportunities. I want the ability to be ME, and have it recognized as legitimate and equal in the way that it is different. That is how many people feel on the scale, but those who advocate for us with the best intentions, often forget. I also feel, that 'Robot Mode' helps me break my own moulds of being, and it stretches, and grows me. It reminds me that I am not fully limited in every area. Sometimes I break the rules of Being Autistic or Normal or 'Being' one way or another. That is ok. It's healthy to have a perspective taking experience.

I am curious if any other Autistics who are not SPD, and regularly have sensory overload, also experience this? Most people have moments when they can be 'other worldly machines' on occasion. This is simply magnified for me. I need these moments, in balance, to feel the full scope of who I am.
For more on Sensory Overload:

(*2)- I am a good actress but ONLY when it comes to pretending to be normal in short circumstances or pretending to be healthy. It is the only kind of "pretend" I do, because I believe in authenticity and truth too. The exception to this is my harmony driver in my INFJ personality. If a situation requires harmony for me to chameleon or become "normal" for short situations to make everyone comfortable or to take the pressure of explaining, off of myself or family, I will do this. I DO pretend for most extended family events, suppers, and get togethers to a degree. I am still quirky but I restrain myself about 70 percent. I do not feel this is wrong because I know who I am and what my limitations are. I also have safe places where I can be 100 percent myself regularly. Different circumstances require different aspects of self. I also know that this is just another side of me that I am tapping into. Yes, it takes a lot of effort, but I will not explain myself unless it is in writing or a situation deeply requires that measure.

Song Choice: Break My Stride- Matthew Wilder (*1),  Fox on the Run- Sweet