I’m not going to mention current events in my country.
This is a series about traveling…
Traveling in interesting ways.
The ADHD is strong in this one:
If a thing is interesting, it is ever so much more bearable.
If I were to travel, I would like to bring my pet.
I hear some of you shouting, “Why, you insufferable loon? Don’t you have enough to deal with??” (Sorry, Mom.)
For one thing, I like her company; for another, she keeps me on schedule and is really good at “body-doubling”, or hanging around to help me focus on a task. She literally holds the yarn while I crochet, and tracks the loose bits of thread when I’m sewing. Cats are supposed to be interfering, but she’s genuinely helpful.
Also… Traveling with a pet definitely makes this more interesting.
Chapter 1: pet passport
I was going to start with the effort to find a vet to make her travel certification happen. I’m not up to that right now.
Chapter 2: Trip planning
I’ve been reading up on alllllllll the aspects of this trip for a long time. Years, really, but most recently for about 3 weeks. It takes some noodling around just to find out if it’s impossible or just kinda weird.
In case it isn’t obvious, I’m okay with weird. Impossible takes a little longer.
Aspects to understand for planning a trip like this:
– The only way to get to my target continent is by air.
– Some airlines are pet-friendly.
– Some airlines that are pet-friendly for domestic flights somehow refuse to carry animals at all on international flights.
– Some airlines that are willing to carry animals on international flights, don’t allow them in the cabin. From my experiences before, I absolutely, flatly refuse to send a cat in the hold, regardless of the airline’s reputation. Never again.
– Am I overthinking/ over-explaining? I think I am.
Point is, there are all these layers and layers of information to dig through. I had to keep on digging through possibilities, then peel back the incompatible options, until everything finally got very simple.
Cats are not supposed to be in a carrier for more than about 7.5 hours. So, all I really had to do was get her from my airport to an airport less than 8 hours away; 3 to choose from. Flights within that other continent are all within that time frame, so the crossing was all that mattered.
Still with me? Good.
Flying into one of these 3 cities puts me at the heart of the high-speed rail line, something I’ve been coveting a ride on since it was first mooted roughly half a century ago.
At the other end of that high-speed rail line is a ferry ride, a 16-hour journey over one of the most adorable seas in the world, to an island that entrances me.
The total cost of the train and ferry (even with the pet) comes out to less than half the cost of another darned multi-leg plane trip *without* the pet, eating bad food, too far up to enjoy the scenery, and breathing other peoples’ air.
In short, if I were to organize such a trip, we’d have 3 modes of transport over 40 hours, lungfuls of fresh air, and moonlight on the Mediterranean to welcome me home.
I might love it. I might hate it and never want to do any of that again. Doesn’t matter from here… because it’s interesting, it’s affordable, and I want to give it a shot.
I’ve been chewing over something for awhile and recently realized that it might be time to apply that much mercy to myself. It’s a more coherent, whole way of thinking about what I discussed in some panic in my previous post.
Complex chronic spoonies tend to drive ourselves hard because we really have no option (the exhausting, but relevant, internal chorus of “adapt or die, figure it out or eff off, push through or give up, fight or fall” is inescapable) but does it need to be so ubiquitous?
A lot of these posts have been oriented on finding light through the cracks, on putting life itself into center stage somehow. I think I’m cooking up a new way of doing that.
The most basic of basics
Many years ago, when I was working as an emergency nurse, I realized that (despite the hype & excitement) our job was fundamentally simple: give people another chance to get “it” right.
Whether “it” was keeping up with their meds, staying off of whatever was poisoning them, choosing better company, finding the healing path that worked for them – whatever. There are fewer “its” than their are people working on them, which is why we are never the only one with our struggles.
That made more sense inside my head. Sorry.
People wind up in the ER because something bad happened, and usually human ignorance, stupidity, or violence was involved.
That’s not about blame. People don’t always get to choose their company or can’t always bear to be alive without some kind of buffer between them and their situations. Even if they did do something colossally daft (like the rich kids who decided to cut out the middlemen and drive 350 miles to buy their drugs from the distributor; 4 came down, 1 eventually went back), it’s not right to require mistakes to be terminal if they don’t have to be.
Of course people with heart disease should take their meds even when they feel fine, and get periodic blood tests to show that it’s working. Of course people with diabetes should keep an eye on their blood sugar and stay on their meds. Of course primary care when you first get symptoms is better than going to the ER when you start to fall to pieces… but it’s awfully hard to find a primary doctor these days.
Life is complicated and increasingly expensive. ER work really shows that.
Anyway, I saw our job not as holding back the sea with a broom (as some do), but as giving individual people a chance to figure out how to do things better. Lift properly. Drive sensibly. Stay off the hard stuff. Find an appropriate doctor who’ll listen – and then talk with them.
Nobody likes to be told, so reciting these mantras to them doesn’t often make sense. Oddly enough, it can be a lot more meaningful when you’re meeting their worried gaze as you administer the medication or fit their c-collar or go over the x-rays with them. Or tape and dress the wounds in their wrists.
There is so much we don’t control… sometimes we just have to remember what we could control, and how to put that in reach. It’s not easy, but it’s often very simple. When the universe is dropping its big hammer, where do I need to be when it lands? Under it? Or can I get off to one side? What will I have to let go of in order to get out of the way? Is it worth it?
The answers to this aren’t always obvious, and “worth it” to some is not the same “worth it” as for others.
What that looked like in practice
We had a lot of repeat customers. Some of them I wound up zipping into body bags, because what it took to get out from under the universe’s hammer was either too far out of reach or not ultimately worth the effort of letting go of what they were clinging to. They mostly didn’t want to die, but it wound up being too hard to do what it took to live.
I’ve got to respect that. It’s not for me to judge.
Some of them I saw come back just for ordinary bump-and-owie stuff, showing me the healing scars (inward or outward) of their old struggles. There are no words for the sense of sunrise I felt on seeing them. It made the rest worth doing.
It was all their work… but it was up to us to give them another chance to get it right.
My chance
I absolutely love to work. Being useful and productive is the bomb! If it weren’t so important to me… well, I probably would not have come down with CRPS, which stemmed from relentless overuse injuries in my case. I could not take a break to save my life. Whatever it was, I had to jump in with both feet, arms flailing and shouting “incomiiiiing!”
I imagine I could be pretty tiresome that way. Belated apologies to my friends and colleagues along the way!
I’ve been wrestling – for years (how embarrassing) – with recognizing that having fun… recreating… seeking diversion instead of merely a change of work… I’m not even sure how to put it… but that loose, apparently useless, seemingly non-productive use of my time, is really good for me.
It lowers my stress levels. It reduces my pain. It raises my spirits. I don’t know if it gives me back any of my lost abilities, because I find it incredibly hard to do and have never been able to hang onto the easy-going vibe long enough to find out.
What with one thing and another (I’m an American living stateside in January of 2025; IYKYK) I have a powerful inward pull to go somewhere glorious – and affordable, thank you very much – and simply muck about enjoying the diversions. Play tourist for once in my life. Soak up pretty colors and different sounds. Be warm every single day.
And, if I get bored or don’t like it well enough, simply go somewhere else.
At this point, a lot of places are more affordable than the U.S. (more on that later) and, for all the challenges of travel in this body, I do plan on doing nothing but recover and enjoy myself for a good while afterward.
…It’s a weird idea, honestly.
Good thing I’m used to maintaining and cultivating relationships via the internet, after a quarter century of having to do so. It makes love more portable.
It’s still a weird idea. Wherever I go, I still bring myself along, and I know I’ll have to leave my compulsiveness behind with my snowboots. That’s unnatural, but I’ll learn.
Learning to let go of that deep attachment to being productive and useful is not the same as not being productive and useful – but it could give me time and space to heal my much-clobbered systems.
That might be the point.
Rest and play is widely regarded as essential. I think that’s the “it” that I need to work on getting right. Get out from under the falling hammer of overdriving a broken system.
Without descending into the morass of modern U. S. history and politics, let’s just say that I’d like the first months – up to half a year – of the new regime to happen with me being somewhere bearable, where good produce is a lot cheaper and the medical care both stable and affordable.
None of this is likely here, where my food prices rose about 30% during the harvest season and there is much loose talk and planned chaos around Medicare and the dole (which I depend on to stay alive) – not to mention the cost of everything rising by 15-60%.
The pundits and those who follow them tell me not to worry, because there are rules and procedures “they” have to follow.
Given the Mump track records regarding rules and procedures, all I can do is smile sweetly so as not to worry my loved ones, and let my mental gears turn more quietly.
Hot tip #1: a tariff is a tax. These get passed on to the consumers, not sucked up by the companies from countries exporting to us.
Hot tip #2: as we’ve seen so clearly over the past 5 years, industries don’t just raise costs in line with their own expenses, but jack them up to see just how much the market will bear. Given a captive market, this has gotten really ugly. Remember eggs last year? The sub-prime lending fiasco leading to the 2008-9 crash? Yeah, it’s an established pattern.
So anyway… here I am: if I stay in one place, I’ll be wrestling hard with un-meetable expenses (my dietary needs are simple, but not cheap) and a constantly-cycling urge to run away. That’s neither stable, healthy, nor fun. Been there, did that, threw away the t-shirt.
I didn’t grow up in one place, or even one country. I’m not mentally stuck here, and I don’t believe I have to put up with the scrambling anxiety or insufferable expenses to come as the Mump Regime and its trail of chaos gets itself through the initial reality-checks.
I’ve been toying with the idea that it’s healthful and good to be warm, stable, and happy. That takes adjusting to, because so much of what makes me feel anchored to the world is about work. I love to be productive. It makes me feel superbly grounded to be useful/helpful to others. This is very compelling… but as far as my daily choices go, doesn’t have a lot to do with being warm, stable, and happy.
It does have to do with abusing my eyes and attention with falling down back-lit rabbit-holes and trying to turn the swarms of information floating around in my brain into streams of relevant words, pertinent to the question I’ve just read.
But I’ve got serious limits and, as it turns out, I am much more useful and productive after I’ve been taking really good care of myself and playing and recreating and being happy outdoors – a lot.
This doesn’t sound like computer-gazing, which is how most of my work happens.
This focus on making myself happy is a weird concept, and I’m still working out a lot of the details. I mean, not even details – I haven’t settled on where to start; even my departure date is unfixed. Getting the right people in to keep my place clean & warm while I’m gone is kind of a big deal too. I’m not prepared to move and won’t sacrifice my sweet little home – not until I’ve got a much better offer in hand, anyway!
Anything could happen. I’m trying to keep breathing properly as I say that.
American Thanksgiving is the 4th Thursday in November. I had a gift that day – a difficult one, but I’ve been unwrapping it and wondering ever since.
My phone (which has my i.d. and my bank cards in it, and it provides my only internet access) disappeared on Wednesday evening.
While this is momentous for anyone these days, I have a disease-specific reason for being harrowed by it:
I listen to audiobooks to drown out my brain’s ongoing response to the ongoing pain, wonky signaling, and that disconcerting imbalance between what I need and what I have or can get to keep my environment safer for my body. To me, it sounds like screaming; I’ve heard others describe it other ways, as crunchiness or a kind of rattling wobble or other experiences entirely. My sensory processing apparatus decided that it’s a constant, ongoing scream from someone too upset to be the least bit self-conscious. Audiobooks and internet rabbit-holes are fantastic ways to manage this, partly by drowning out the internally-generated sound by the external one that I want to hear, and partly with the power of distraction.
Pain, reasonable & irreconcilable anxiety about how I’m going to get through anything from this day to the next chapter in my life, and the occasional neurological crumping (when my cognition shuts down and my coordination goes to hell, so I can’t make ideas or hold things) … all of these are best addressed by comfort and distraction. For me, books and memes and contact with absent friends are all good for that.
For Thanksgiving – when everything is shut aaaaaaaall day – I had none of that.
I just need a moment to process this.
It was a sad day. I couldn’t make or receive any of the usual holiday calls with people I love. I couldn’t go out to eat, and the previous evening I’d had to put back all the holiday food I had in my cart and get only what I could pay for in the cash I had on hand.
I had the sweetest visit from 2 friends (I explained why I had nothing to feed them with) who made it their mission to check on me twice daily until I was en-phoned again, and that helped me get through several hours much better.
Apart from that, I had little to do but hear the screaming, and wonder what I would do next year in a country that has voted for unprecedented chaos that, on the showing so far, is liable to shatter a large part of what makes it possible for me to live. The litany starts off like this: “The level of daily chaos to come is unbearable to think about. Every time I read up on the latest plans or appointments, it gets worse.” Not good for dysautonomia, among other things.
At the end of the day, I began to apply a bit of cognition to this experience (as you do) and realized something important…
The screaming was a whole lot quieter than it used to be; than it was, say, a year ago.
Last year, it was a lot quieter than when I first moved in here, right before the Pandemic. That was a tough time and the screaming was so loud I had to play the audiobooks and dvds at a fairly ridiculous volume to get the benefit. (The neighbor knocked on my wall a couple of times.) That volume might be partly why I now have ongoing tinnitus, a ringing in my ears that’s always at a different pitch and volume from the inward screaming. Clearly, my brain decided not to confuse the two.
Also, I noticed that my mind had actually recovered some ebb and flow!
There were times of day where it was natural to fix things, other times for doing something creative, times to sit and be quiet and times to move around and chat with the cats…
Natural texture and dimension in my mental activity, which the constant audiobooks had smoothed out and neutralized since they came back until that day of enforced quiet.
To the able-bodied and -minded, this is perfectly natural. It didn’t used to be for me. I had 10 or 12 alarms set throughout each day to tell me exactly when to do each kind of activity, because that mental texture had been quite, quite lost.
I got through 2 nights and a day without any alarms. I survived, and I also realized that alarms are jarring.
Who knew??
It turns out that my slowly-healing autonomic system has finally agreed with me that a stable diurnal schedule is a good thing to do, so I wake up within the same half-hour every day, without needing to be kicked awake by a series of 3-4 alarms.
The phone climbed out of its hiding place the next day. (Of course, I had already thoroughly checked there.) I canceled almost all of the alarms, except the one for feeding the cat.
I can make a short list for each day and get through it by riding those mental waves – and being kind if I can’t get them done at the very time that I wish to. It seems that being kind to myself knocks down a number of stress-related barriers.
I’m still digesting this new experience of the world. It’ll probably continue evolving over some time to come.
It’s not exactly normal to have such a significant level of recovery when you’re close to pushing 60 and sitting on 25 years of pain-related neurological disruption, including 20 years of dysautonomia.
So yeah, it was a sad day and not an easy one, but what a gift it turned out to contain!
I needed such a gift. My life is about to change drastically, and it’s up to me to work out which path to take through it. None of them are easy, but some could be more rewarding than others.
Can’t wait to see, not only how I’ll screw up, but what I’ll learn from it!
I’m going to try something new, as I navigate this tricky shift in life: asking for input and advice from people outside my head and its rabbit-warrens of associated ideas.
I know, wild idea… and for that reason alone, probably worth trying.
I’ve seen more than the usual amount of material about having hope, lately.
I see why, of course. Many people view hope as an incentive to carry on when things are going badly and they can’t change that.
So, hope serves as a forward path or guiding light, a way to keep going when you’re not sure you’re going to wind up anywhere good.
Speaking as a long-term survivor of a pretty rotten condition, I certainly understand the value of that!
The point, I’d say, is the forward path itself, the guiding light that gives us the idea of having something positive to go for, when the usual ideas and activities don’t work or make things worse.
Hope is one way, but not the only way. Sometimes hope is counterproductive, and if you’re convinced that hope is the only way to keep going, that can be a real downer.
To me, hope is like a pretty lie: I’d like to believe it, but there’s no logical support for the hopeful ideas that, for instance, I could attain full remission and be able to work to support myself again, that the Atlantic circulation will strengthen again and stave off total disaster, or that my country could look forward to a survivably rational government in the new year.
And yet, some people cherish those hopes in themselves, and who am I to persuade them otherwise? Their futures are for them to envision. I’ve got to deal with my own, and that’s plenty!
My own sense of a forward path is something I have a hard time articulating…
It depends partly on the deep sense of history I grew up with, 10,000 years of the ebb and flow of human vanity, decency, terror, greed, and stunning insights.
I’ve read notes and letters from people burying their entire families in the Black Plague… between king and lord of warring states… Spanish merchants discussing trading alliances along the Great Lakes in North America in the mid-1300s, very hush-hush… Gilgamesh and his passionate grief for Enkidu… love songs from every age and between every gender… desperate missives from ancient Romans fleeing the fall of their government to families who never answered them, or told them there simply wasn’t enough to go around and still keep everyone else in their accustomed style and comfort.
Whatever we suffer, we are not alone in it. We are one more part of a very long course of events, and every problem has been faced before. It’s up to us to find the best solution for this particular version at this moment in time – and we have this great depth of information about how it has been faced before.
We are never alone in our terror, betrayal, or pain. Somehow, that helps me.
Another part is that – another lesson from history – there is a future worth having, if you can stay alive long enough and do what it takes to increase your odds.
This alone has gotten me through some things that should have been terminal: I had to see what the future worth getting to would be. So far, it’s been a fantastic outcome, relatively speaking. Well worth getting to!
The last thing, which is the hardest to explain although it’s the easiest to notice, is my stubborn idea that it’s my job to hew my best and truest path through this life – do my best while being honest about my capacity, be guided by my humane ethos, keep the long view, and don’t let the misery of my circumstances decide how I’m going to face them. That job belongs to my will. It has had a lot of practice.
Sounds really noble or something. It sure doesn’t feel noble! It feels messy and rebellious and defiant, most of the time. It requires me to disrupt expectations about how women, who are middle-aged women, who are white middle-aged women, who are white middle-aged women who originated from upper-middle social strata and good education… should behave. In short, people who are supposed to have options and protections and resources that I haven’t even been able to dream of for a very long time.
That’s what I felt I should have been. It’s a useless “should”, but a gluey one.
For all that I’m pretty cheerful (especially with the morning sun on my face, like now), I don’t have much truck with “hope”, because it feels like placing too much weight in an imaginary basket. I can bank on my diligence, curiosity, and determination, though. They aren’t imaginary at all; this blog reminds me of that.
I think that every one of us has to find the forward path or guiding thought that works for us individually in our own ways.
We’ve each got to play to our own strengths, and do our best to keep the deep-dyed “should” phrases in their place.
Sometimes hope is just another “should”, and it’s okay to set it aside for other motivators. You’re still whole without it.
Maybe it helps to know that the Darwinian statement, “survival of the fittest,” does not mean those who have the strongest minds or the healthiest bodies – despite the narrow libertarian/right-wingy assumptions and the hunter-gatherer-based ideas of cost/benefit.
It means “those most able to adapt to fit the new environment” and that, dear reader, means us: the disabled and neurodivergent are the OG adapters to strange environments, the fittest to figure out how to handle the increasingly worrying future.
One way or another, this era in history – with its uncertainties, intensity, and rising waves of change – is ours. Like it or not.
Collectively, we can do this. Individually, as ever, it’s an open question – but let’s find out.
I’m profoundly curious. (Take that however you want, LOL)
When I was an inch from dying, around 12-14 years ago, when there was nothing left of anything I thought made up my life… I found, down there at the bottom of everything that had been, this relentless creature who had to know how the story would go. I could not allow death to overtake me because I’d never know. So I lived – on pure willpower for a while, but then things started to change and get better & better.
This came up in my Pain Psychology appointment today, following on from the “new pain doc” appointment I’d had the day before. I’ve had 4 pain specialists in 9 years, and (thanks to extended litigation) around 19 in the past 20. Since much more than my life depends on my pain docs, and I have no control over the situation, this is harrowing, every single time.
My medical PTSD is a main focus of my pain psychology treatment, which is how this came up for discussion.
My curiosity is clearly more fundamental than my reflexes and primal needs, so, “Let’s figure out how to use it to interrupt some primally-driven anxieties.” Today’s quote from Kylie Steinhilber, PhD, my pain psychologist. From this, we discussed 2 further insights:
Being inquisitive is about holding an empty mind/heart in the present: pure now, with an open eye to the unknown future.
Trauma responses are about having emotional context and re-experiencing that history, thinking (“knowing”) it will go this way or that way based on what’s happened before.
I’ve never realized that quite so clearly.
If this had been a rough “new pain doc” visit, I could go to the open & curious state of, “so that’s what’s here/now. I wonder where it will go?” – instead of falling into the misery and grim anxiety of “knowing” what it will be like based on prior experience.
Note to self:
BE CURIOUS about where the story will go! That is rational, even though it doesn’t come with a plan.
Prior experience matters, but it’s a lot better for me to stay open and inquisitive and be with what’s going on now. More options, less antipathy between us, and that opens up communication – which improves outcomes, even in a crap situation.
Serendipity was my brain’s home base pre-injury, & it likely still is. It’s OK to go there and hang on when things get uncertain.
I’m in the 20% of humans who thrive through a serendipitous approach, although it drives more linear people (the 80%) up a tree, because it looks crazy to them & sometimes makes them want to reach for a net – or a straight-jacket.
When I use their (the 80%’s) linear approach (which I’m technically good at; mad skillz), the best I can do is mediocrity, if that. It doesn’t work well, no matter how careful the planning and research I put into it. Makes no sense, but that’s how it goes.
Chaos and WTFery are going to find me. I’m one of those people that things happen to. No, that’s not logical, but accepting it is rational. Interesting distinction between logic and reason there.
I see my mental job as learning – over & over – how to ride the metaphorical wild horses, not keep trying to dodge their flinty hooves as they run over my well-plotted garden.
20% of humans are like this. We’re not alone, just unusual.
Note to self:
I CAN TRUST MYSELF to know how to go and when to stop. Truly.
Cf. my “15% overdo recovery time” note in my personal pain rating scale. I really do know what it means to overdo by 15%, and why it’s harder to recover from than 10%. *That’s* evidence of a high level of insight & self-management. I can perceive it accurately when I loosen my grip on “tha Plan” and listen to myself.
I said to myself, “Self…
“LET the inner story that ‘everything will go wrong’ BE WRONG.”
Some moments suck anyway, but they pass a whole lot faster when I stay curious and open and let things go differently than expected.
All that said… I am simply over the moon with delight that this “new pain doc” visit was such a good one and that I feel safe at last in that part of the system! That frees up a ton of energy, now and ongoing. The relief is stupendous.
The resident (training) physician remarked, unprompted and naturally, “After all, you are the expert in your own body.”
Hearing that from a doctor is a show-stopper. As one friend & compatriot said, “I’d be less surprised if a unicorn came to your door and told you you’d won the lottery.”
I headed to psychotherapy after texting, “I’m on my way. I’ll see you in person today, barring the unexpected”
I was feeling a bit cautious, because a couple hours before, the thought had come to me, “when things get hectic, trust your training.”
What training? Was I about to have a series of intrusive thoughts harking back to the times I’ve had to file restraining orders, one of which magically disappeared and I had to flee the area – right before Christmas? I hoped not. Martial arts training has certainly come in handy, but come on…
No, no intrusive thoughts, but I did wonder which set of training I should have in mind.
A few miles down the interstate, I saw a pickup truck stopped dead, and a sedan facing it.
People were only just getting out of the truck. I put my flashers on and pulled in behind.
I definitely trust my training in this kind of situation. I put my anxiety to one side and sailed in.
The only person to worry about was a littlie in the back of the sedan. Had spontaneous pulse – a good one – and respirations. He could speak, to the limit of saying, “I want my Mommy” (sound of heart-strings tearing), so I checked his spine at his neck. It was there, but not quite right. Once he could speak more, he told me his neck hurt where I touched it (I’d been holding his head & neck stable since I felt it). As I told the fire department medic later, “on me, it’d be a chiropractic adjustment. On a littlie that age, I’m not sure.” He nodded and sent his buddy in with a pediatric cervical collar.
Littlie’s mother was on the phone the whole time with him. So much love swirling around in that car. I told the Dad that I noticed it, and that it’s healing.
At each stage – or rather, just before the next round of excitement – I explained to Littlie that there would be more people, highly trained people who really cared about him being okay. Let him know roughly what to expect at each stage. Coached him to go along with things as well as he could. When the fireman asked him to squeeze his finger, he squeezed my hand instead (sound of heart melting).
I could see most of my words going over his head (as expected), but I could also see the sense of reason and structure calming his exhausted and shocky brain so he could tune in a little more.
I grew up in a musical household, so naturally I hummed pretty little made-up tunes and it visibly calmed him – and possibly his parents too, a little.
I’ve been working on learning how to stabilize a shocky system for 25 years, on top of my trauma nursing work. I’m only a patient – and a nerd – but still, I have lots of good training. I trusted my training in that, too.
I gave his mother my number right before the fire department and EMTs rolled up. I think it was a training day, because there were 7 or 8 more people there, one of them a cheerful charming know-it-all (every team needs one of those) who got the best responses out of Littlie.
I let the kid know I had to go but his Mommy would stay on the phone with him and he’d be cared for by these really nice people. Told his Mom I loved her kid and he was terrific (sound of heart-strings pulling).
Once his c-collar was on (definitely a training day; I helped get it positioned and sealed correctly in the end) and they had the gurney ready, I realized I had to stand up. After perching my crippled butt by one hip on a steel door frame for half an hour. In front of people. Specifically, a total of 9 or 10 fit, athletic slabs of beef (-cake) no less than 10 years younger than me, and most of them half my age.
This was not going to be great for the ego, but I knew I could get a laugh out of it.
So I used both arms and every available leg (which was slightly less than 2) to lever myself upward, saying, “I’m an *oooold* trauma nurse” by way of cover, and squirmed through the kindly, protective testosteronic press and into fresh air.
I signed off with everybody and retreated to my comfy car.
I called my psychotherapist and said, “Remember what I said about ‘barring the unexpected?’…”
We had a phone session once I was safely off on a side street and in a proper parking space. She was full of commentary about how I applied those psych skills and met psychosocial and informational needs appropriately, as well as the nursey stuff. So yeah, that was good…
… because my brain was churning constantly about every single moment and thought and decision for an entire hour. Looking for a fault. Looking for something I’d missed or where my training had lapsed or been forgotten. Cycling through, over and over, looking for any lapse.
This used to be how I improved my skills – look for errors, even tiny ones, and figure out how to prevent or avoid them in future. Now, it’s just my ADHD brain torturing me.
And computer says Nope. Failed to suck. I’m pretty sure I failed to suck. That’s a relief.
I’ve been thinking about it pretty much nonstop, but rather than worrying myself woolly, I got an organizing thing for my car and picked up some food. Both of these are calming, grounding things, perfect for pulling my adrenaline out of the stratosphere.
Then I crawled home and had fresh corn and gluten-free carrot cake for dinner. It’s good to have a little sweetness when your body is still convinced the world is full of excoriation.
I’ve had no calls from them and I don’t expect one. They’ve got to be absolutely wrung out regardless of how things went. The kid comes first, and then comes their own care and self-management.
They don’t have to think of me ever again: I know how shocking and painful it could be to revisit the moment.
I’d love to know. I hope like crazy that the kid came out of it OK. I never got to follow up with patients when I was a nurse (because confidentiality), and I’d sure appreciate it if this family wanted to give me a heads-up just to soothe that old itch.
All that being said, I want all you non-nurses to know that they don’t owe me one word of contact or one moment of concern. I was in the right place at the right time with the right training, and I trusted my training. That’s what we do.
They have the hard part: figuring out next steps with a shook-up and possibly injured Littlie who was going home early because he was already ill.
That kid was having a rotten day.
I sure hope it got better.
Forestalling future problems
I don’t have a jump-kit for my car. That could be a problem in the future. I was lucky this time because all I needed was my brain, arms, hands, and voice.
It’s probably the 6th or 7th accident I’ve stopped at and I really do know what’s needed at the roadside – and it isn’t much. I used to get confused by the fact that I didn’t have a stethoscope, oxygen on tap, i.v. gear, and All Tha Meds. Once I’m on scene, though, it gets very easy.
Any blood or, indeed, anything wet? Nitrile gloves, packed up in pairs and stowed in a closed outer pocket to keep them clean & dry and easy to get on.
Heaven forbid, does anybody need CPR? This very rarely happens, but when it does, I don’t want to have to dig for the needful. I physically can’t do chest compressions (though I can coach any able-bodied person properly) but I can darned well use a mask with a one-way valve as if I’ve had years of practice. Years. You don’t have to have that (the training has shifted away from doing rescue breathing) but I feel that I do.
Pressure dressing? Kerlix. Sling? Kerlix. Wound cleaning? Kerlix makes a great sponge. Wound wrap? Kerlix. Piece of clean water-resistant paper to slap over a bubbling wound? Wrapping off a Kerlix.
So, plenty of Kerlix.
Road rash? Plenty of saline rinse (and a Kerlix) then a petroleum dressing to stabilize the damage until the ER can do a better job.
And possibly most essential: disinfectant cleansing towels, individually wrapped and big enough to grab. Those get used before if there’s time, during if the patient wants cleaning up, and definitely afterwards.
Because allergies & neurological reactivity, I stick with ethyl alcohol 70%.
Secure the mess. A gallon-sized zip bag or 2 for garbage and wrappings. Having a garbage bag is one of the things that separates rescuers from ego-trippers.
Oh, did I say that out loud? Sorry. I don’t want anyone not to stop & help… I just wish that, if they’re going to the effort of bringing gear, they could pick up a bit. Seeing blood and mess is not good for survivors & passers-by.
I got all these online for about $10 each, and also got a clear bag (with outside pockets) to put the kit in.
I’ll keep backstock at home.
What I don’t carry
Blood pressure readings, stethoscopes, and pulse oximetry are at-home and in-hospital concerns: we want to know if what we’re doing is working over time and refine our understanding of the body’sfunctional state.
In the field, the main issue is not whether the patient has rales or a murmur, but whether the lungs and heart are keeping them alive – a much simpler, larger-grained issue.
So, these tools might be nice to have, but for a noodle-noggin like me, they’re an added complication and a bunch of expensive equipment to lose at the scene.
In the field,
You need to keep pulse and respirations going,
the spine stable,
make sure the inside stuff stays inside
and in place,
and (as much as possible) the outside stuff stays out – or at least doesn’t move much where it’s inside the person.
And that, ladies and gentlebeings, is Advanced First Aid and Basic Life Support in a nutshell. You’re welcome 😊 Now go get that training… please?
Poems don’t need me to write them, but sometimes I need to write something that sure isn’t prose. This is today’s poetical offering on the altar of, “it wasn’t ever in the script, but this is life, and it’s kinda cool.”
Odd legacies
Dinosaur footprints & petroglyphs..
Ancient cousins were marveling,
And it took ’til now to find their signs!
Some legacies don’t appear for
Eeeeeee
eeeeee
eeeeeons
But still send shivers up spinal tracts.
Some legacies (like genes) vanish. No trace.
30 years ago, I hoped to be
That Writer whose words were indelible,
Lifting sore hearts, harboring sore minds
Against the casual brutality
Of any age. Documenting software
Cured that, as each season’s work was irrelevant
In days. I still hoped, ached, tried…
But now, I feel that my legacy is written in the flow of blood through hearts –
Ephemeral, but going on forever.
Perhaps an heir of mind will scratch
Petroglyphs near footprints
For others to find in nine thousand years
And send shivers up spinal tracts.
I wrote the start of this for a fellow spoonie today and realized it’s a good starting point for a subject most people find overwhelming: reading medical science when you’re starting off as a non-scientist.
The article I cite first is a good example to start with, because it’s written well and has passages of clear English to work with. So…
I suggest reading the abstract and introduction. After that, just skim the first sentence of each paragraph, since (in science writing) that tells you what the paragraph is about.
If the first sentence makes no sense, skip that paragraph.
If you can figure out the first sentence, glance at the rest of the paragraph to see if there’s any more to glean. If not, move on..
It’s a skill
Reading science is a skill, and skills take time to master. That’s expected! Share what you glean with your doctor and ask them to help you understand it better.
Honestly — this isn’t to puff myself up, it’s just the nature of patients to dis themselves, so hear me out — if you can read my stuff and make out half of it, you are plenty smart and literate enough to start reading science. It’s just work and time, and the time will pass whatever we do, and the work will get easier with time. We just have to take care of ourselves and pick our time, when we’re chronically ill.
Using the right amount of honey
Doctors might give you attitude about comparing your Google search to their medical degree, but that’s not what you’re doing: you’re studying up on your condition, which is wise, and you’re expanding your info base on this thing that has imposed on your life, which is survival.
So, feel free to correct them sweetly, and don’t be afraid to pour some admiration on them if it helps them to re-focus on your information-gap.
The point is not who knows more overall. That’s not in question. When you talk to your doctor, you’re talking to someone who had to memorize, for instance, the Krebs cycle (here’s a partial explanation: https://www.medschoolcoach.com/the-krebs-cycle-mcat-biochemistry/) — so, yes, they have a depth and nuance of knowledge that’s nearly impossible to replicate without going to medical school.
They like having that acknowledged, because they take a lot of painful flak for not knowing everything about everybody’s illnesses all the time, and they need to know that you know what an effort they made to be able to work as a doctor.
So, it’s good to acknowledge that enormous effort.
Then they are usually able to hear you when you clarify that you’re not arguing with them, you’re trying to improve your understanding of this thing that affects you so profoundly. You trust them to help because of their knowledge.
Trust. Help. Knowledge.
These are keywords because they are core professional values for most doctors.
They’re important to acknowledge, and great to invoke and rely on.
That said… if you can’t rely on these characteristics in your doctor, even after you tell them that that’s what you need, then it might be time to find another doctor if you can. These core values are far more important than whether a doctor has good social skills or a good handshake.
When all is said and done, guess who has to live (or not) with the outcomes? It’s you. While the doctor is the subject-matter expert on the medical info around your condition, you are the subject-matter expert on being in your body and dealing with the fallout. There’s a degree of respect that should go both ways, though modern practice makes that hard.
The key to reading science is realizing — or at least, going ahead as if — you’re perfectly capable, and just need to practice. Science is written by humans, and you’re a human too.
1. You are a perfectly sensible person. If you’re reading this, you know how to read (or access translations from) English; also, you have access to a whole world of dictionaries. MedlinePlus is especially helpful in explaining concepts and helping us learn to read medical stuff.
2. Not all scientists can write well in English, and none of them write in English all the time. That’s okay. They went to school for a long time to get extra vocabulary and learn to do what they do; good for them. They’re still people, and they have to write in English at least some of the time. That’s where you can come in.
3. You can read the English just fine. Trust yourself and take time. With practice, you can learn more lingo over time, and get better at reading more science.
Just work from what you can understand now, and let that grow over time. You’ve got this.
Choosing credible sources
While you’re learning to read science, start where you can and work from there. As you get more confident and your understanding grows, you’ll learn to be choosier.
The gold standard for science info
When learning how to assess science, you’ll hear a lot about placebo-controlled, double-blind studies and that method is often important. This method of science gives us more reliable statistical probabilities about whether something will work in a certain situation. The statistical probabilities become reliable when several thousand people (“subjects”) have been tested, probably over many different studies.
With rare diseases, this is obviously pretty unlikely, so we have to work with less scientific certainty. C’est la vie.
Statistical probabilities have more limited value for patients than doctors, because we’re individuals, not pooled data. There used to be a phrase used in medical school: “Statistics mean nothing in the case of the individual.” This has gone by the wayside a bit, but it’s still true.
We may have to cast our nets further afield, because we’re looking for clues that might help us, personally. Be aware when you’re doing that, and put those science reports in your mental “hmm, maybe” folder.
I showed a case study that had a marvelous impact to one of my best doctors. He said to me, “If I could put that effect in a bottle, I would. It worked for that person, and we have no idea why. We do know that it doesn’t work for all these other people. Everybody’s different. Figuring out how to apply one thing to help a lot of people is our holy grail!” Lloyd Saberski, MD.
And that’s why doctors rely on the pooled data gathered from the scientific method. They want to help as many people as possible with each thing they try. Otherwise they fear they’ll spend too much time chasing rainbows.
We patients have to find our own rainbows, just as we have to count on our doctors to keep an eye on what’s statistically worth trying. It really is teamwork, and we both need to do our jobs.
What’s peer review?
Before you give a study to your doctor, it’s worth checking if it’s from a peer-reviewed journal. Don’t expect them to put too much stock in it otherwise.
Peer review means that other people in related fields have checked it over for sanity and validity. This is important for us patients, as well as the doctors who rely on the information.
You can Google whether the journal your article was first published in is a peer-reviewed journal. JAMA, BMJ, and the Lancet are all reliably peer-reviewed.
The value of literature reviews
Then, after a fair amount of studies have been done on a topic, there’s usually a literature review. This is when a qualified scientist takes a close look at all the studies, throws out the ones that were badly designed or poorly run (because bad technique creates bad data. “Garbage in, garbage out”) and writes an overview of what the current good science says.
They also discuss the strengths and weaknesses in the data, and suggest where future science funding could go, in light of the science so far.
Literature reviews are wonderful places to improve your knowledge of your disease/condition, expand your vocabulary, and get a lot better at understanding what goes into the science on your condition in the first place.
For instance, it used to be widely believed that most people with Complex Regional Pain Syndrome had had traumatic childhoods. (“Blame the parents” LOL.) There was a literature review done on about 30 years’ worth of studies, and it turned out that almost all of them were so badly-designed, poorly run, and calculated with so much bias, that nearly all of the studies had to be thrown out!
This taught me very important lessons:
– Just because most people say it, doesn’t mean it’s right, even if they should know better. This is an excellent attitude to have while reading science.
– Methods matter. You’ll learn over time how to sense whether the methods used are appropriate to the topic studied. The wrong method can lead to truly bogus results. The method has to fit the material.
– People lose their minds when they think about pain, as well as when they think about childhood trauma. In practical terms, this means I have to approach all normal (non-CRPS) people’s reasoning about my condition (which is characterized by relentless agony which a non-CRPS’d brain cannot even conceive of) with compassionate criticism. They do not know what it’s like, nor how to live with that pain and still think rationally. They’re not able to know. I don’t want them in a position where they do know, because that’ll mean their lives are as battered as mine is.
Therefore, every word they say has to be filtered through my awareness of how their minds get lit up by unreason, when they think about my pain. This, believe it or not, is perfectly natural. (Look up “amygdala hijack” for background on this mechanism.)
I survive because I’ve learned to substantially displace or ignore one of the most powerful primitive signals in the human body. That isn’t natural, and nor should it be.
These scientists mean well, without question. However, their logic is necessarily fractured when thinking about this, because they lack my tools for facing it. I need to dig into their data and methods before I can buy into their conclusions.
That’s good to know!
The conclusion of that literature review? CRPSers are likely (not guaranteed) to have had relatively eventful lives. Whether the events were traumatic or wonderful wasn’t relevant to our probability of developing CRPS.
In other words, we live in interesting times!
Where to find science to read
Google pubmed, and you’ll find the National Library of Medicine (NLM) division of the National Institutes of Health (NIH). This is a searchable science library which hosts articles from all around the world, in whatever language they were published in plus English. You can search any valid medical term — for instance, use the full name of your disease rather than its initials, for better results:
Here, you can see that I typed out “complex regional pain syndromes” instead of CRPS.
Some of them have full articles that are free to read (look for “Full Text Link”) …
The square brackets around the title tell you it originated in another language. The note under the title tells you which one. Good science is done all over the world. I’m glad we can access so much of it!This image shows what pops up when you touch the Full Text Link button.This is the original site that published this paper. As you can see, it’s in German here, but an English translation is also printed below the German version. For better or worse, English is the world language for science and medicine. I feel lucky being born into an English-speaking family, because it’s tough to learn. All those synonyms… and the crazy spelling!
…But most will show only the abstract, that is, the high-level overview of what the study is about. For our purposes, that’s the most important thing, so it gives you something useful to work with.
The interface gives you options for saving, sending, and citing the articles.
Touch the “…” button to get this helpful menu. If you get a free account with the NLM, you can use these to help you keep your studies organized and accessible.
To use these, just touch or click the one you want. They do exactly what they say they will.
If you touch one of the menu options that requires them to store the info on their side — like “Collections”, “Bibiography”, or “Citation Manager”– it will give you what you need to sign in (if you already have an account) and, at the very bottom, the option to “Sign up”:
The site is very helpful; just slow down and let yourself look at one thing at a time.
Once you feel more self-assured, try out Google Scholar. It’s smaller in some fields and generally less selective, but that can be good. I suggest saving it for later only because it’s got fewer guard-rails. We’re all different, though, and you might find that easier.
These two libraries aren’t identical. They do overlap.
A word about MeSH terms
MeSH stands for Medical Subject Heading. It’s a curated list of specific terms used in the National Institutes of Health materials. This kind of consistency is necessary when organizing a stupendous medical database like the National Library of Medicine.
MeSH terms are listed at the bottom of each article. If that article was useful, you can click the MeSH terms to have them saved to your PubMed search history:
I’ve circled the heading “MeSH Terms”, where it appears below other back-matter after the article.
Here’s a tip: when using their Search tool, don’t worry about capitalization, but be very particular about spaces and punctuation. Copy them exactly.
Using MeSH terms will improve your future searches, because it makes the most of the databases self-referencing mechanisms.
Trust your eyebrows
Best tool in your mental toolbox: when you’re reading sentences you know you do understand and, yet, you feel your eyebrows moving around on your forehead… that logic is not right.
The scientist might be misinformed, biased, pulling a fast one, or just plain wrong, but it doesn’t really matter which — that logic is not right. The underlying pattern-matching part of your brain can tell. That’s a primitive part of the brain and, when you’re paying attention to it, it’s extremely hard to fool!
Trust your eyebrows. If you want to, save the article and come back to it when you know more, so you can figure out where the problem is. I assure you, there is one. Your eyebrows don’t lie.
Feed your brain
Reading science is hard work and brains are big hungry things at the best of times. Feeding it right can be a huge help.
Meds & caffeine
If you’ve got attention problems, adjust your meds and caffeine to give you some extra focus when you’re reading science. It’s a lot more fun that way!
Smart produce
Green, blue, and purple foods are absolutely marvelous for brains — and pain. They feed the nerves, literally. I know you needed an excuse to eat more blackberries, blueberries, collard greens, and rocket salad, aw shucks.
I also know it’s not the cheapest stuff in the market. Explore your local options for farmer’s markets, roadside stands, produce sales, and organized assistance like EBT/food stamps and healthy-living programs giving more access to produce in the state, like they have in Massachusetts and California and other places.
This is a great opportunity to learn more about your condition and to bring what you’ve learned into your life (more on that later), and the upfront effort pays off so much in the end.
Body-safe phenylalanine
Obviously, if you’re prone to phenylketonuria, skip this part! IYK,YK.
Also, keep in mind that this can have an effect on some meds — sometimes giving them a boost, sometimes making things worse. Be sensible, do your due diligence, and study it up for yourself if you’re interested. Also, use your self-documentation skills: note what you do and what it does to you, change what needs to change, and take responsibility for the results of your choices. We are our own best caregivers.
I’m discussing the physiological activity of this thing with the weird name, and what I’ve found in my life and those closest to me. This isn’t any kind of assurance that it’ll do good for anyone else. Put it no further than “hmm, maybe” in your mental filing system and do your own further research to validate what I say and get an idea how it might work for you, yourself.
Basically, phenylalanine is a precursor to the “up” side of the neurotransmitter suite, dopamine and norepinephrine and even epinephrine (they all transform into each other as needed). These neurotransmitters carry messages among the parts of the brain involved in learning and memory. Taking in phenylalanine can have a truly astonishing effect on attention and memory WHEN you’ve got fundamental deficits, as do people with central and longstanding pain and some other conditions.
TL;DR — If it doesn’t make an obvious difference in less than an hour, you don’t need it.
I’ve trialed using aspartame, which went well for me. (Discussing my results with my doctor paved the way to including SNRIs in my med regime, to my considerable benefit.)
Food sources of phenylalanine
This is where hard cheese and smoked or processed meat shine. They’re rich natural sources of phenylalanine. They also have saturated fats which, in moderate doses, seem to help with pain and brain symptoms.
As a moderate part of a well-balanced diet, folks.
This hasn’t been well-studied; it’s one of those things you pick up after being involved with self-managed patients for over 30 years.
It doesn’t take much. I found that 2 or 3 bites of aged cheddar would absolutely light up my brain for 45 min to an hour and a half, depending on my deficit.
One pal of mine keeps meat jerky sticks on hand for study sessions. Aged cheese works better for me; jerky works better for them.
Now, unfortunately, mast cell activation problems have moved cheese and smoked meat out of my diet. When I need a brain boost, and it feels like cheese might help, I have to use a supplement instead.
Supplementing phenylalanine
It’s more measurable to use a supplement called DLPA, or d,l phenylalanine. It’s a blend of natural and manufactured forms of phenylalanine. One works better for pain and another for depression, but the blend seems well-tolerated and helps both. Phenylalanine suppresses certain inflammatory kinases and may help suppress pain at the spinal root (that is, right where the base of the peripheral nerve path comes out of the spine) as well as helping with mentation and cognition. (Sarcastic Sister notes: The recent science about it magically disappeared in the wake of the “war on pain meds” and I won’t pretend to understand why.)
There is a maximum recommended dose before it gets toxic, but if you’re seriously thinking about that, you’ll want to do your own studying, and might want to talk to your doctor about SNRI meds as a possibility. (The N is for norepinephrine, which phenylalanine supports.)
Why bother with learning how to read science?
Knowledge and understanding are the most powerful tools you can have for dealing with complex chronic health problems. It may or may not change what you have to deal with, but it certainly gives you more and wiser options about how to deal with it.
Even if you aren’t ready to start now, you can circle back around to this whenever you want. It’s attainable; you can do it. It’ll always be there (although individual articles and topics may come and go.)
The patients who learn the most and put that to work in their own lives, are the patients who most consistently beat the odds and have the best quality of life over time.
Therefore, better information leads to better living with complex chronic illness. My HIV patients taught me that 32 years ago at my first nursing job, and it’s truer than ever now.
Note: Nobody here says it’s easy. That said, our complex chronically ill lives are never easy.
Pretending that getting through the day is not, itself, almost a superhuman task is a disservice to our strength, so let’s just start off by recognizing that everything we do is really hard work.
Knowing that, I have found that the effort of learning and applying what we learn pays off a whole lot more than passively waiting to be saved and feeling rotten all the while — and still being wrecked & exhausted.
I can whole-heartedly recommend learning and figuring things out. It’s a winner.
My poor ol’ body has been carrying an unfair load for a long time. It does its very best, but the dice are loaded and, of course, aging intensifies all the problems and reduces all the healing mechanisms that keep it going.
Its experience as a physio-electro-mechanical system constantly in search of homeostasis – that is, a flexibly stable state — is seriously affected by the fact that it’s got these conditions which seem to think that homeostasis is a nice big target to shoot at and instability is fun. Woohoo!
I’m having what I suspect is a barrage of endocrine stuff which, among other things, makes my body’s pain and ability to adapt simply go phut.
CW: graphic descriptions of pain.
The bone pain triggered by walking is off the charts. Now I get one walk per week, it has to be less than 2 miles, I come home and go straight to sleep for 3-4 hours after, and have no attention or stamina the following day; I have to write off that time completely. My muscles and tendons feel like they’re filled with burning shards of glass. My leg bones feel like gelid columns of fire, like stiffened napalm, so that I’m half-afraid they’ll go squish and disintegrate under me, and who knows where that napalm would go if they did.
Honestly, that’s weird.
Activity is good. Moving is the secret of life.
Used to be.
My cycles still help at times. The recumbent trike, while it unloads my lower back beautifully, exacerbates my neck posture, which redounds into headaches for days. It also takes up a huge amount of space (it’s over a meter wide), so I have to stick to the wider paths and not try to use it in winter. However, it gave me back a lot of life last summer and fall. I had no idea what this year had in store for me, or honestly I’d have gotten something cheaper. Less safe, less comfortable (despite the neck thing), less of a joy to ride, because that trike is fantastic of its kind and fits like a glove… below the neck.
The cute retro bicycle? I didn’t sell it (though I probably should). I’ve been able to use it on some good days, but unfortunately I was still right about the road vibration on my spine and arms, and the pressure on my carpal tunnels. But it does fit into narrower spaces.
So, at this point, I have 3 modes of transport which used to work well, but this absolutely relentless business of being chronically ill has nearly, if not quite, taken them away.
Breathe, me. It’s just a problem.
It’s just a problem, and problems are meant to be solved.
I have a rowing machine which is currently my safest option for activity, although it doesn’t get me anywhere. It uses most of the body’s muscles, and I can tell because I can go for 6-8 minutes before I get sick and light-headed and the burning shards turn up. I’ve been trying to go up from 6 minutes without making myself sick, but my body can’t get past the 7.5-minute barrier without the spiculated pain all over and the desperate exhaustion for days. And yes, I incremented very slowly, but it just won’t work.
Weird. I cannot get used to that.
Time was I’d row for 20 minutes at “fit man” level, and go even longer in the water. I wanted to get a sea kayak and use it for transportation; I loved the motion of kayaking and could not imagine a better way to start or end the day. Middle-distance running (3 to 13 miles, depending on how much time I had) was a lot more affordable and accessible, so I did that instead. I was one of those annoying people who really enjoyed running.
I try not to think about that. These kinds of losses are about so much more than “hey, I could do this thing, yay me”; it’s more about how I fit into life and engaged with the world around me, about the tools I had available to help me through the hard times and illuminate the good ones. So much is out of reach.
That’s life.
Breathe, me.
I’ve got more specialist appointments crammed into the next few months than I’ve had in years; possibly ever. The science is a lot further along than it was when I was working as a nurse, thank goodness. The reason why I get heavier when I don’t eat enough is technically understood. The trouble lies in getting people to believe it and trust that I’m telling the truth.
It’s very weird to me to be disbelieved: I’m white, well-educated, have big blue honest eyes, and present info well. Now, as a fat middle-aged woman, apparently I’m inherently much less credible. Obviously, I must be kidding myself (if only!) and comfort eating (if only!) and clearly just being too lazy to work out (if only!)
I have no idea how that works, because you don’t get to middle age with significant illnesses by being stupid or incapable of self-care.
Breathe.
Keep breathing.
Problems are meant to be solved.
I’ve been thinking over solutions to the “how to be able to get things done outside the house” issue. I have partial solutions – all of them depending on others or on problematic systems.
For now, they’ll have to do. I’m glad I’ve got even them, of course. For all the towering cost of agony, uncertainty, and logistics, it beats having none.
Keep breathing.
I have a good home that I love. That’s one huge thing right, an unbearably difficult problem that has definitely been solved. From here, I’ll just have to figure out the rest.
