Just Me

The ramblings of no one extraordinary

Loss, Grief… and Hope — April 9, 2019

Loss, Grief… and Hope

What do you do when you’ve grieved the death of something? When you’ve spent years getting over that fact that you’ve lost something? When you have finally gotten over the fact that it’s never coming back, and you’ve successfully moved on?

What do you do if there’s suddenly a possibility that that thing could come back?


As a child, I was super active. I was always climbing trees and exploring forests. I played on the basketball and volleyball teams at my school, I ran track, and I was the only girl on the middle-school baseball team. I was just as good, if not better, than the boys.

I wanted to join an actual baseball team, and the only reason I didn’t was because at the time my parents were assistant pastors, and baseball games would have been on Sundays.

I was a 12 year old who woke up early and went for runs in the morning.

I craved it. I loved it. It was just a part of my life.

 

But then I was diagnosed with cancer. I was told that chemo would be hard. That it would take a toll on my body. But if I could bare with it, if I could fight through it and make it to the other side, that I could go right back to my life.

I remember those words: “… Back to your life…”

It was those words that I stuck to. Those words that helped me get through it.

I spent 2 years with zero energy, lying down, too sick and weak to move. I lost almost all my muscle mass. But that was part of the deal. I was weak, and had almost no muscle left, but I would be able to work back up to where I was before.

 

But in January of 2012, I was diagnosed with Osteonecrosis, or Bone Death.

One of the steroids I had been on as part of the chemo regimen, had been killing the bones in my joints. It had affected my shoulder, my elbow and both of my knees.

My doctors stopped that steroid as soon as the Bone Death was diagnosed. But it would take two years for the steroid to wear off, and for what was left of my bones to re-harden. But what had died and collapsed would never regrow. (short of a miracle)

But probably the most traumatic part of this particular ordeal, was that the doctor I saw about this condition, said I should be in a wheel chair for the rest of my life. That any impact  could seriously injure me, and that I was looking at a life of replacements and inactivity. And that any chance I had had about returning to an active lifestyle was dead.

Imagine, if you can, being a 14 year old, going through cancer. And then the one thing you have been holding on to this whole time, the one thing keeping you going, has just been violently ripped out from under you.

What are you supposed to do? How are you supposed to take that? How are you supposed to move on from that?

 

Thankfully we switched from a geriatric doctor to a pediatric doctor. Who realized that young people don’t want a sedentary life. But I still needed to be careful. That I was probably looking at replacements in the future. But that I still had a lot of life left to live, and I should live it how I wanted to.

But that didn’t change the fact that any impact would still injure my joints. That I would need replacements in  the future, and it was only a matter of sooner versus later. It didn’t change the fact that I still was not allowed to run.

 

I spent YEARS getting over all of this. I gave up hope that I would ever be active again. I avoided thinking about it and escaped into Netflix.

I hated it. I hated being weak. I hated feeling weak. And that turned into a hatred for exercising. I hated feeling how little I could do, how short a time I could last, how little energy I had. So I avoided exercising at all costs. It just wouldn’t be in my life anymore.

I went to counselling, and processed and grieved the loss. I moved past it.

And in that time, I instead turned towards art. (And that was and is still a whole journey upon itself.)

I lost activity, but I gained creativity.

I still go to therapy pretty regularly. There was the whole situation with burning-out, and rediscovering myself. I’m currently making my way through Julia Cameron’s book, The Artist’s Way.

 

But now I’m dealing with something new.

Something is making it’s way up from the depths of everything I have pushed down and buried. Something is aching to be felt again. Something in me is yearning for movement, and resistance, and energy, and strength. Something in me is pleading, begging to be active again.

And I don’t know what to do with this. I’ve spent so long grieving that part of my life. I’ve avoided thinking about it so much, I’ve put so much effort into finding another avenue for my energies.

And I just don’t know what to do. Part of me still hates exercising because it makes me feel my weakness. But I don’t know how long that part of me will remain resisting. 

 

But my biggest struggle with all this is, how can you dare to hope for something that you’ve grieved and gotten over? How can I fulfill this yearning? How can I do this? Do I dare? Do I dare hope to be active again?

I’m scared that if I let myself hope again, if I let activity back into my life, I will just get let down again.

That something I do will break me and that I will just end up in pain for the rest of my life, or stuck in a wheelchair. That if I let this back into my life, that it will just be ripped away again.

I’m terrified that if I start exercising, that I will get those bursts of energy I used to get as a kid, bursts of energy that were only satiated by immediately, as fast as I could, sprinting! And that I won’t be able to act on them.

I’m already so terrified of hurting myself, that if I fall, my whole body suddenly, and violently tenses, just anticipating the impact. It’s such a strong PTSD reaction, that my brain shuts off, and I black out the whole fall. I just suddenly end up on the floor, absolutely exhausted and in pain. (This is how I broke my foot falling down 1 stair)


So what am I supposed to do?

I’m trying. I’m starting slow. I can walk, and I can do push-ups on a counter, and I can do sit ups.

But how far do I dare let myself go?

How do you let something back into your life that you’ve already grieved and let go?

I Burnt Out — April 3, 2019

I Burnt Out

You’ve heard of burn out, right? Like, when people work too much and then they end up super exhausted until they take an intentional break, right?

Well, not quite.

See, I burnt-out last year, and I’m still recovering.

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I am Autistic, and I have a hard time with emotions. Always have, probably always will. So going through something like cancer, where you need to deal with a whole array of emotions about a whole bunch of different things (hair loss at 13, poisonous chemotherapy, strong steroids, fighting for your life, etc…) was understandably difficult for me. But to add a cherry to the top of that sundae, I was also attempting to stay caught up with all my school work. So, my brain decided that it couldn’t deal with the physical symptoms, And the emotional issues, AND the mental strain of trying to will myself to fight to live, AND to think about homework; so it decided to shut a few things off and exist on autopilot for a while.

I spent the better part of the two years going through chemotherapy, and for a few years after, with no emotions, and with a safeguard installed in my brain to help me get by. I got through, probably almost 8 years, just by existing, just by surviving, just going through the motions; but not really living.

Only essential systems remained on, and the rest were shut off, and were just not available to me.

Do you know how lonely it is when you can’t feel anything? When you can’t emotionally connect with anything, at all? (Besides the fact that I was an un-diagnosed Aspie who would have had a hard time connecting emotionally anyways.)

But, I thought I was doing ok. I was pulling my grades back up, and I was doing alright with the whole “re-entering society”  thing.

So I went on with graduating highschool, and working on my plans for post-secondary. I put in just enough effort into my schoolwork that I was getting high B’s-low A’s. I am smart after all, so I could afford to do the whole start-to-finish-the-night-before-the-assignment-is-due type of thing. And I got away with it. My memory was amazing. I could remember every thought I had, plus a bunch of random information for other people (like where they put something down, or if they had an event coming up, or their schedules), plus an entire crammed chapter’s worth of information for a test the next day. I spent my nights in bed running through prospected budgets and life plans and lists, so many lists. I needed to move on with my life, and figure out what to do with my future. And I needed to do it right then.

I learned to read my body for when I was pushing myself too hard. I could only go for so long before I worked myself too hard, and my immune system gave out. I would work myself into getting sick! But I would take a day to be sick, and stay home and sleep and rest. And then the next day I was ready to get back into the swing of things.


I was eventually diagnosed with PTSD, anxiety, and depression. And when I started taking meds, I realized that I had actually been EXHAUSTED. I hadn’t realized that my brain was working overtime to fight against an onslaught of intrusive thoughts of possible sicknesses, injuries or accidents. My fight-or-flight response was hooked up to a hairpin-trigger, and my whole body was so tense so much of the time; just anticipating, waiting for something, anything, to happen.

So I started taking meds, and I felt a shift in my energy levels. I had more energy to draw on than I had had for a while. I understood now that while I was better, I was still running on less energy than most people; because even with meds, I still fought against PTSD and intrusive thoughts. But I suddenly had more access to my brain, more space to crunch more numbers, to memorize future expense costs, to extrapolate and analyze and plan and theorize and calculate.

I had pushed myself getting back into “normal life”. I had to build up the energy to get back to going to school 5 full days a week. I got my grades back up, I had graduated highschool on time, with honours. So I figured I needed a break. I took the 6 months after graduating off, and did a whole lot of nothing. But I ended up spending the too much time on my phone or iPad, and I was falling into a funk. So my parents pushed me to get a job.


I worked at a grocery store for a while. Then I worked at a new business for an aunt, where I helped train new employees, opened and closed the store, and towards the end, I was responsible for the front counter AND the kitchen all by myself 2 evenings a week. I has also stated taking college classes, so in all I was working and schooling about 50-60 hours per week. Can you believe, that became too strenuous.

Right then I was offered a new receptionist job. So I went back to working part-time at the grocery store and part-time receptionist-ing.


The receptionist job was amazing! After a few weeks of part-time training and proving myself, I was brought on full time. I was tasked with scanning all the paper files onto their computer, and with writing the training manual. The whole thing was computers and systems and spreadsheets and reports!

But once we rolled around to the one year mark, the whole job changed. They now had a job description and a completed training manual, so they didn’t need me to be hyper-administrative, hyper-analytical anymore. Now they needed me to paste a smile on my face, add a spring to my step, and play the part of the peppy, extrovert receptionist!

Suffice it to say, that did not go over well. I did try for a bit, I really did. For a whole year that job had been the perfect fit for me. But to be the person they now needed, I had to put all of my energy, and I mean, ALL OF MY ENERGY into acting. None of what they wanted came easily to me. I had to change my attitude, my expressions, the way I held myself, the way I talked, the energy with which I did everything. It was actually because of all of this that I discovered that I was autistic. And the energy that I had to put into this job now was leaving me so depleted that I was becoming very depressed. The only problem was that I was actually doing a really good job at acting, and my boss had no idea how much I was actually struggling.


I didn’t quit that job by saying that it was killing me, but I did quit that job. Instead I said that I was leaving with enough time for them to train someone else over the summer, in enough time before the office manager left for a while; and so that I could go back to school.

It was learning that I was autistic, and talking to our family’s autism behaviour consultant that I came to BI work in the summer of 2016. My natural mannerisms and temperament work very well with autistic kids, it turns out. I’ve gone through a handful of families before landing on the main 2 or 3 that I work for now still.


I did go back to school that fall, but only for one semester. I didn’t continue because I still didn’t know what I wanted to do for a career, and I didn’t want to just mindlessly spend money if I didn’t have a plan.

I spent the next 2 years hopping around, working for a few different families.

It was now almost 8 years since the whole journey began. I was diagnosed in June 2010, and it was coming up to June 2018. I had dabbled with counselling and therapy a bit in the time in between, but I was now feeling ready to really work on stuff. I felt like everything around me was settling down quite nicely, and it would be nice to be able to feel things again. Turns out my brain had a similar idea.


The best way for me to describe it, would be: like a box. Like there was a box in my mind where I could put everything. Like, EVERYHTING. Remember back towards the beginning when I said I could even remember stuff for other people? This was the mechanism my brain put in place to help me survive returning to civilization. This was my fallback when I was tired, or exhausted, or cramming for an exam for the next day. I got by, by remembering everything. I could put everything in this box and it would keep it available for me to call upon whenever I needed it. But, at the bottom of this box, were all of the original thoughts, emotions and traumas from going through cancer and treatment. So I was actually just cramming more and more stuff into this box; relying on it to get me through life. For 8 years I had been stuffing this box full. And my brain gave me one good day; one day to organize and plan and meal prep… before quitting on me. Honestly.


 

It was a Sunday. I had gotten up that morning, and went to church. After church I felt like I had a ton of energy, and I wanted to use it. So I stopped by Staples and grabbed some flash cards and file folders and a couple other things. Probably bought some new pens, because, why not. (I’ve inherited my mom’s pen addiction… Thanks mom) I went home and spent the afternoon writing out recipes, planning meals, scheduling, invoicing, planning my summer, budgeting…

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And then right about 4 or 5 o’clock, my brain broke. The box broke, and my brain short-circuited. I was suddenly, violently, done. Just done. I had no thoughts, no emotions, no energy, no motivation. Nothing.

I couldn’t even remain sitting. I sank to the floor. I closed my eyes.

 

I was burnt out.

 


I had been doing so good. I had been going to counselling and dealing with the trauma. I had moved out into my own place. I was doing the whole adult thing. I had thought I was living. I thought I was past just existing. But suddenly, everything I had been relying on to get through the day, all my fallback systems and safety nets and my brain box, all of it was just gone. The box had shattered, and what remained of the box was suspended like dust in the vast emptiness that now was my mind.

I couldn’t remember anything. I couldn’t hold onto my thoughts. I couldn’t remember words. I couldn’t pay attention to any one thing for more than a few minutes.

And I had no energy. None. I had maybe 5 spoons per day.

But the world keeps turning, doesn’t it. I had to keep working. I could get up and get ready for and go to work. But in return, I could not cook meals, or clean the dishes, or shower, or do the laundry, or go shopping, or talk to people…


It’s tough when burn-out is so close to depression. When your mother and sister have intimate knowledge of depression and depressive slumps. When they push you to exercise and go for walks and just push out of it.

But you can’t. Because it’s not just depression. It’s different. It’s not just a chemical imbalance. I’ve been depressed. I’ve had depressive slumps. And this was not that. Using your last spoon to go for a walk will not raise your mood and give you spoons in return; you’ll just end up more tired and out of spoons, but ultimately in the same place.


I’ve spent this past year dealing with more trauma and shit, than I had in all the years prior. I’ve worked on so much, and I’ve had so many breakthroughs, simply because my brain can’t hold onto them anymore. I’ve re-balanced my work-life balance. I started focusing on becoming creative again. I’ve had highs and lows. I’ve had spurts of time where I feel like I’m almost whole again; not the same me that I used to be, but maybe even a better me. And I’ve had lengths of time where I’m back to not having enough spoons again. But all in all, I believe I’m slowly climbing back to the top. I’m figuring life out, AGAIN.

 

But last year, I burnt out. And I’m still recovering.

My Attempt at Explaining Spoon Theory — March 29, 2019

My Attempt at Explaining Spoon Theory

Think about your day. What is everything that you do in a day? Try to remember every little thing you do.

You get up, maybe you shower. You’ll have to dry your hair. Brush your teeth, brush your hair, deodorant. Get dressed. Maybe you eat breakfast, maybe you skip it. You probably have a cup of coffee or tea on your way to work. You do your work and interact with your coworkers. Maybe you run out to grab something for lunch. You work for the rest of the day. You might need to stop by the grocery store to pick up a few things. Ideally you make yourself dinner. Maybe you have to deal with a pet. You throw your dirty dishes in the dishwasher. You decide if you want to just chill at home, maybe you could tidy up the place. Maybe you had plans to go out. At the end of the night, you clean your face, brush your teeth, change into pajamas, and head to bed.

Why would I have just made you go through every little detail of your day?

Well, do it this way now:

Everything now costs units. Each task will cost you different amounts of units. Go through your day and keep track of how many units you use by the end of the day.

 

Wake up and heave yourself out of bed  –  1 units

Shower  –  2 units

Dry shampoo and a messy bun –  1 units

Teeth and deodorant –  1 units

Put on Make-up –  1 units

Pick today’s outfit –  1 units

Get dressed – comfy –  1 units

Get dressed – business formal –  2 units

Feed a Pet –  1 units

Walk pet –  2 units

Make and eat breakfast so you can take your meds –  2 units

Grab coffee/tea prepared the night before –  1 units

Make coffee/tea –  2 units

Make lunch to bring to work –  2 units

Grab Leftovers for lunch –  1 units

Drive to work –  1 units

Transit to work –  2 units

Do your Job –  5 units

Interact with chatty Coworkers –  2 units

Brought Lunch –  1 units

Run out to grab lunch –  2 units

Remember to take meds & vitamins –  1 units

Drive Home –  1 units

Transit Home –  2 units

Stop on the way to pick up groceries –  2 units

Feed a Pet –  1 units

Walk pet –  3 units

Go to the gym –  3 units

Make yourself dinner –  1 units

Clean up the dishes –  1 units

Order Dinner –  1 units

Eat Dinner and Take meds –  1 units

Set up coffee/tea for tomorrow –  1 units

Pack Lunch for tomorrow –  1 units

Set out tomorrow’s clothes –  1 units

Tidy Apartment –  2 units

Do some laundry –  1 units

Call a friend –  1 units

Put on Make-up –  1 units

Host a friend –  1 units

Drive to friend’s house –  1 units

Hang out with friend –  1 units

Drive home from friend’s house  –  1 units

Stay in and watch a movie –  1 units

Brush teeth –  1 units

Take quick shower –  1 units

Wash face –  1 units

Put on Pajamas –  1 units

Get a good night’s sleep –  1 units

 

How was that? Did you have to go up and down the list a couple times to decide which tasks to chose? How many units does your day “cost”?

Ok, now imagine you only have 25 units available per day. If you have anxiety or depression, you have one less unit to begin with. Try it, see if you can do it. It is possible, it just requires some serious thought and planning. If you really need to, you can borrow units from tomorrow, but then you have that many fewer units to work with tomorrow.

 

Now replace “units” with “spoons”, and you get the Spoon Theory. It’s a metaphor used by “Spoonies” to help describe how they live their life.

We can come up with ways to limit spending spoons: dry shampoo, hats, fast food delivery, a freezer full of easy to make meals, a pantry full of snacks, doing a lot of prep the night before, setting a million alarms for the next morning. Sometimes in order to limit the number of spoons we use, we forgo some tasks entirely and end up with a sink full of dirty dishes; a large pile of dirty clothes; a drawer in the fridge with weeks old leftovers. Sometimes we need to cancel plans with friends, or call in sick from work. It requires a lot of effort and planning, it does.

The number of spoons we start with is different for everyone, and sometimes different tasks cost different amounts of spoons between people. But it’s a widely accepted metaphor those of us with low energy or a chronic or invisible illness.

 

So next time you’re wondering why your friend has to cancel on you again, or why someone can’t just text or phone you back, or why that one friend never comes out with the group ever; maybe consider that they just might not be able to. Maybe consider just taking that friend out for coffee, or getting together at someone’s house to just hang out. Chances are they want to see you, they just need to do it using less spoons.

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