Rollercoaster Life: The Good, The Bad, and The Spoonie (04/11/2017)

This entry is part 14 of 14 in the series Periodic Updates

Life, Our Universe, and Pets:

To start with – an accidental coffee mishap this morning might make this a bit more scattershot than usual.  If so, I apologize.

We keep two Keurigs in the house, as the single cup brewing helped a ton with our widely varying approaches to sleep. Our coffee Keurig decided to become the Machine of Weird Intermittent Error (-3) yesterday, and we were unable to fix it.  Keurig was amazing about it, as they always have been, but it meant that when I went to make my first cup of caffeine this morning, it told me NO!

This meant remembering other methods of creating coffee. I pulled out the percolator, but could not remember how much coffee to use.  I checked in with Mister Tea.  He was also not awake enough to truly remember how much.  In the end we guessed.  The end result was coffee that was strong enough I had to add more sugar. Whether there was more caffeine or not, there was at least a psychosomatic effect.  I have felt a bit more frenetic this morning.

With that disclaimer – on to the original ideas for the post:

Life continues to be interesting, some parts good, some parts a blend of good and bad, and some parts …  unnervingly awful.

In the awful category, we are going to be setting up a GoFundMe (or something along those lines) soonish. We are trying a few last ditch options for the worst of the reasons why before setting one up. With luck, it will “only” be for needed medical care and help with training a service puppy. Without luck…  Well, there will be a more complete post regarding it when the bridge is crossed.

Additionally in that category is the ongoing nightmare of tinnitus that Mister Tea has been experiencing. Since January he has had a near constant old-tv-tube noise going on inside his head, and the volume has been rising steadily. He will have brief periods of respite, and times where the volume lessens, but overall the situation has been deteriorating. Given the way imagining what he describes makes me twitch, he has been handling it extraordinarily well – but it has complicated his capacity to handle his proper job, as well as spiked his general anxiety levels. He’s had a couple suggestions for mitigation that help some, though not enough, and no real indication of a fix in sight. There are some tests planned (including a brainscan), more for his migraines than for the tinnitus, but it does play a part. Good thoughts and wished luck would be appreciated.

In the blended category – I’ve been trying a new experiment regarding pain management. There’s been an interesting set of lessons learned, and a relatively steep curve to the learning connected to some of them.

It’s been quite a long time since I have attempted mitigating pain with anything where I have numbers that give me data regarding my pain levels and situation. Having them has been more than mildly disconcerting. There’s a part of my mind that loves to harangue me about weakness – and implies that there’s nothing actually wrong, I’m not actually in that much pain, and that I need to stop giving myself any sort of leeway and just deal with it.

Apparently that part of my mind is very wrong. Intensely wrong. And the doctors who have warned me that the sort of pain I experience on a daily basis is dangerous were right.

This is positive, on a level, as it means I am taking steps to quiet that part of my mind, and working to take steps to take my pain a bit more seriously.

It is also terrifying and uncomfortable. I’d leaned more towards agreeing with the “I’m just weak” premise than I had realized, and shifting that is taking work. On a level, believing it was all inside my head made it easier to face, because it made it my fault – if that makes any sense at all.

Additionally, I’ve usually aimed for ‘taking the edge off’ of pain.  Easing things just enough that I could function, and only bothering when things were shutting down because the pain was that intense.  At Mister Tea’s urging, I’m working on doing more than that. And I have learned that it takes very little time for your body to lose acclimatization to pain.

When I get the timing on things wrong and life starts to head back to normal, my body panics.

My.  Body.  Panics.

Not my intellect. I will be sitting there, and inside my head there is a dialog explaining why things feel so awful, and pointing out that it is nothing we haven’t dealt with before, and my body only hears Charlie-Brown-Grownup sounds as it tears off in a “oh-no-we’re-gonna-die-this-is-so-awful” anxiety tear.

Frustrating.  Creates a temptation to quit the experimentation with pain management, and just ride out the days until things return to normal and I re-acclimate. Which is a terribly bad idea, given how untenable the situation was becoming, but still quite tempting.

Add to that the complications brought on by allergies and the continuing saga of the pinched nerve(s?) and the sleep dep associated with new puppy and…  it’s been a balancing act.

Which brings us to the good. I’d mentioned in the last updates post that we would hopefully be welcoming a new furry family member – and we have.

Meet Raubahn.

 

He is an amazing puppy, and I am not just saying that due to my own bias.  Most of the people who have met him since his arrival concur whole-heartedly.

He is the calmest puppy I have ever interacted with, and seems to have missed the memo that he should only be able to manage his bladder for a number of hours equal to his age. (The first week or so was a bit dicey, but he has slept through the night three nights running now.)  He also prefers chewing on things he should actually be chewing on.  We do have to correct him occasionally, but nothing has been lost or eaten yet. In two weeks of teething puppy life, that’s fairly spectacular. (Yes, I knocked on wood after typing that.)

He is taking the basics fairly well, and relatively swiftly, so we have high hopes for his ability to eventually help me with iffy legs and PTSD. It will be really nice to have assistance with getting to a comfortable place when my legs turn off – rather than either dragging myself or just settling where I fall and enjoying licks and snuggles until I can move again.

There are many more things I could tell you about Raubahn, and how he and Dulce and the cats are integrating – but as this is already getting long, I think I will peel that out into another post.

Social Media and the Internet:  From SHINY! to the RNG hates me

Everything is shiny here.

Well, everything I feel like speaking to, anyway. Politics continue to be a quagmire of terror, loathing, and depression – with occasional hillocks of hope or sanity appearing…  but I have entirely too many good things to talk about to wallow in said quagmire.

A bit back I was introduced to the concept of bullet journaling by one of the lovelies I follow on Twitter. At first I was quite disturbed by the idea of it, but I made myself take a step back and actually analyze what a journal of that sort could do for me…  and decided to give it a go.

Interestingly, the most useful result so far has been having a physical representation of what I have actually accomplished in a given day. I can get incredibly work/task focused and always have a drastically long list of things that Must Be Done. Prior to the bullet journal experiment, I usually ended each day feeling like a failure. I was only properly aware of all the things I had not managed to do, and didn’t bother to track what had actually been done. Now I am being forced to acknowledge that progress occurs, even on the days I feel made of fail, and may make some progress towards “realistic expectations” of myself, as a result. (I can practically hear Mister Tea saying, “I’m not holding my breath” or “I’ll believe it when I see it” with more than a hint of long-suffering.)

It has also been useful for keeping track of the myriad ideas/tasks/lists/projects/etc… even when I am having the sort of pain day where short term memory doesn’t manage to write to long-term. (Yes, this is an actual problem that can occur. It is maddening.)

From the same source came the idea of #spoonieway – taking the book “The Artist’s Way” and working through it, with a group of spoonies.  The idea being that it will be less difficult to press forward, or find motivation when there are others who understand the problems presented by chronic illness working on it at the same time.

I feel like all those birds should be carrying sheafs of spoons…

So far, it has been quite successful, and I have scribbled just for fun for the first time in years.

Interestingly, it is a book I have tried to work through a couple of times on my own, and always set aside. It was neat to have it pop up in my twitter-feed as an idea, as it allowed me to say “yes,” and step back into work I have wanted to finish for years.

Even beyond the premise of ‘The Artist’s Way,’ the interactions have been very helpful. Shared experiences, challenges understood, obstacles grokked…  it’s been wonderful.

The morning pages that are an intrinsic part of it have also helped a lot. I forget sometimes how healthy journaling is for me.  It gives me a place to sort through frustration and anxiety, depression and angst – getting things down on paper and discussing them with myself helps to keep them from slow-cooking in my head until they reach dire repercussions critical mass. It is something I have always known I should really be giving myself the time for, but generally have a long list of reasons that I can’t.

Having a reason connected to other people to do so may have set me back on a path of proper self-care in this area.

The advent of new puppy is also attached to the internet – in a slightly-but-not-really roundabout sort of way. The woman who brought Raubahn to me was someone I met through the Facebook of a good friend from high school – she seemed quite sane and interesting in the comments she left on his statuses, so I decided to risk “New Human” and sent a friend request.

I will likely never cease to be glad that I did, or glad that she responded positively.

The internet: sometimes there is treasure, and sometimes disaster strikes.

The internet is sometimes a brilliant Cave of Wonders (that doesn’t actually collapse on your head.)  (Most of the time.)

Teas, Cocoas, and Coffees (Oh My!)

Most of the work here has been the behind-the-scenes sort that you don’t see much about. (Although I did get around to listing our new rooibos chai – Red Son Chai.)

We’ve been focused on getting things named, making labels,getting photos taken, batch-sizing blends, etc…  All the work that is required to get a tea to the point where it can be unleashed upon the world.

I’ve learned that Mister Tea should continue to take our photos. I manage decently, but not with anywhere near the skill and precision.

We did finally do some experimentation with grinding down cinnamon for one of our projects. We’ve wanted to create a cinnamon cocoa for quite some time, and having learned that we could simply use ground cinnamon gave us hope. However, it turns out that our spice grinder doesn’t create a fine enough powder for our purposes. Next step towards cinnamon cocoa will require waiting until our next supply order – where I will acquire some cinnamon powder, and then we shall continue our experimentation.

There will be several more new tea posts, so watch this space for details.

Entertainment:  The Final Frontier

We’ve had a number of fun excursions to one of our favorite local shops:  Pen & Pad. For people who love to write, it is a wonderful candy store.

Pens of all types and kinds, inks in a rainbow of colours, and journals and stationary that will make you melt, if you’ve the right slant for that sort of thing.

Mister Tea reconnected with one of his oldest friends a bit back, and among the things she and I share – is a love of pens, specifically fountain pens.

One of our excursions to Pen & Pad was specifically to introduce her to it, as it had escaped her notice prior. (She lives in one of the more far-flung sections of Albuquerque, while we actually live within walking distance of the glorious temptation that is Pen & Pad.)

I think she both loves us for the introduction and winces because of it.

On one of the other excursions she enabled Mister Tea’s first real fountain pen. It seems as if he has fallen prey to the bug that is good writing tools. Time will tell if he ends up collecting inks, borrowing mine, or sticking with cartridges.

Pen & Pad was where I picked up my first Lamy Safari. Prior to that pen I had always assumed that fountain pens would be incredibly fragile – things that you had to treat with the same kind of extravagant caution you would a harp – and thus things I should never touch.

My first Safari cured me of these assumptions.

It went through the wash several times, got run over by my Jeep at least twice…  what finally killed it was exuberant puppy teething.  (Not Raubahn – it was Domino who ate that particular pen.)  Learned recently that I may be able to replace the part that was chewed.  Planning on remembering to take that old soldier pen to Pen & Pad to see if that is the case on our next excursion.

One of the days we managed to meet up with this friend started with a lunch, continued with some pen and ink happiness, and ended with a spur-of-the-moment tabletop RPG. We started an interesting story together, the three of us, and I am hoping we manage to make time to continue it soon. I love tabletop role-playing games. When at their best, they are an exercise in shared story-telling.  The GM is the primary author, of course, but your players create their own threads, and choose which of the things you spin out in front of them to pursue – sometimes expanding sections of your world you hadn’t originally intended on building into brilliant additions to the whole.

Far and beyond the best part of our relaxation and fun times since the last updates post was finally being able to meet my friend, Kristina. (Mother of Danes, Saver of Lives, Wrangler of Puppies (Human and Canine), Magnet for Lost Furry Critters, Reader of Books, and…  the dear and cherished friend who brought Raubahn to us. There’s been mention of her in prior updates posts, as well as in the post about our Ravendane Chai.)

The day she was driving out here was surreal. There was this amazing thing that was going to happen, and it didn’t seem possible that it was actually happening, and I spent a large chunk of the day wondering if I was hallucinating or dreaming.

There was, of course, the worry that is probably fairly common when finally meeting someone face to face that you initially met via the internet – that everything will somehow be made of fail and you will lose this friendship that means so much to you.

The worries were unfounded, and she was just as nifty a human being in person as she has been online, if not even more so – and the only thing that really changed was the depth of the sadness that she lives so far away.  (It got deeper.  Quite a bit deeper.)

The time she was able to be here was far too short, and the distance is pretty ridiculous.  It was a lovely weekend, and I definitely hope to be able to visit with her again someday. (Or miraculously end up living closer.  Or have transporter technology happen.  Or…. something…)

Last Cutscene

When I first started sketching notes together for this post, the scribble for this section was “Life and Rollercoasters.”

The initial focus for that thought was specifically attached to chronic illness – the way your good days feel miraculous, being given a bit of yourself back, even if only for a short term loan – while the bad days…  are a similar level of awful. The kind of awful where you are playing spoonie-games like “Is it time to go to the ER yet?” and “New symptom or something ignorable?” and “Damnit! I thought the pain scale was 1 to 10!”

However, the more I thought about it, the more I realized that concept can apply to life overall.

At least in mine, my luck seems to come in really good and really horrid. It has also sometimes felt like there was a payment due for all the good things that occurred.

Some of that may be the definitely-not-rose-coloured lens PTSD adds to my worldview, but I doubt I am the only person who feels that way.

I think some of this comes from living in a culture that is so centered on both what people deserve and on what they can buy.  When you live somewhere that seems to work off of a “for profit” model – it can seep into your head.  An author I follow on Twitter had a wonderful thread on this mentality in America – healthcare, prisons….  and also on the (usually) unspoken lie that if you are poor or sick, you deserve it – because of some moral choice, or moral lack.  Even if you follow all the rules, the resonance is still that it is somehow your fault.  And it is insidious. (The thread happened on March 9th.  I definitely suggest following her, finding it, and reading it.)

My guess is that it is that resonance, that underlying thread is a part of what makes me worry when good things happen – that sense that there will inevitably be something horrid (likely sooner rather than later) to pay back that good fortune – because I, of course, am certainly not deserving of such things.

Because I am broken, physically, and I must have done something to deserve that, right?  It makes me a drain on the people who care about me, and on society generally, which makes me an awful person….  Right?

Because even with all the intervening years between me and the traumas that caused my PTSD, it still causes issues with my interactions with people and the world.  This makes me ‘difficult’, and causes a need to give me “special treatment” in certain situations.  This is unfair, and makes me a drain on the people who care about me, and on society generally, which makes me an awful person…  Right?

Because I have not managed to pull my bootstraps hard enough to become one of the… more successful and financially unworried people.  Which makes me part of the problem with things like Medicare and (at some points in my life) – food stamps – and other programs that help people.  Which makes me an awful person gaming the system…  Right?

I guess what this chunk of words boils down to is:

Try to pay attention to your reactions to the bad things that occur in your life. Watch for the (even bare whispers of the) assumptions that you deserve them, that there is something about you, something you did, something you caused that brought them about.

It is highly unlikely to be true.

And if you can stop blaming yourself for things you can’t control, life will probably be a little less stressful and a little less disheartening and a little less dark.

Best of luck.

Just as important when speaking to yourself.

Series Navigation<< The Undying Cold, Medical Roulettes, and the Hope/Terror Balancing Act
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2 Replies to “Rollercoaster Life: The Good, The Bad, and The Spoonie (04/11/2017)”

  1. Omg, it is so, so hard, the constant struggle between, “If I’m in pain constantly, it’s probably serious,” and “Nah, I’m just a big ol’ wuss.” Currently working on that, as well.

    • I wish you luck with it.
      *smiles wryly*
      And am always willing to chat about the challenge of the whole mess, if you need.

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