Wake-up metaphor

I woke up today with this metaphor on my mind.  Not sure if it was dream-related or not, but an hour later, the metaphor still has the ring of truth so, I thought I'd write.
Life now, as opposed to life before fibro, is like flying without any autopilot or co-pilot.  (Not that I've ever flown anything, lol.)  If I'm the pilot of a plane, a jet, under normal circumstances, I have help.  I have a copilot for another set of eyes, and I have autopilot to help in other instances.  But now, imagine this, I am flying the ginormous aircraft full of life without either.  This is what it is like to have fibro, and to live with it.  I want and need help just to get through the task.  In my case, my task is just moving myself through and functioning at a basic level in my day.  It is actually more than a full-time job to do this task.  I need so much care, and I am so limited by being alone with it (alone, like the pilot, no one else informed to help with the task) that it overwhelms what my human body is capable of.  Now, I am not alone in life.  I am happily married and partnered to someone who actually does give a damn.  I have a priceless family of origin who treasure me, but none who are geographically close.  I have a handful of friends and other family members who love me, but none who can , nor would I want them to, drop what they are doing in their lives to help me get through a day.  But, THAT IS WHAT I NEED.  no, not need, want.  THAT IS WHAT I WANT.  I feel so not up to the task that it may as well be Mt. Everest.  No exaggeration.  Some days, the only way I think I'll survive is because I've survived so many already.  Honestly.  It's that bad.  So the lesson is this:  I must take care of myself because I have no copilot nor autopilot.  If I shy away from the task, the plane will crash.  Life on the plane will be lost.  I am ultimately and entirely responsible for life on the plane.  There isn't anyone else to turn to, no one else to lean on.  Just me.  And, I am SOOOOO limited.  The only way to get through the day is to let the limitations shine.  I know on the surface, that seems like embracing victim-hood, but it isn't.  I'm choosing not to be a victim.  I'm choosing reality.  I'm choosing not to use my precious energy fighting against what isn't winnable.  I'm choosing to save it for a purpose of a higher priority, like, getting myself fed.  If I wasted my energy fighting about "oh, poor me, I don't wanna live like this, it isn't fair, so much pain, woe is me..." then that takes energy, and quite possibly, the exact amount of energy I could have used to feed myself lunch.  I am alone in the cockpit.  Yes, that is my only job.  Flying the 747-Marie.  Waking up and getting through each day.  I don't have any autopilot I can turn on so that I can go work at another job.  I don't have that extra set of eyes, ears, hands, to propel me through the world without thinking.  Every single thing my body does takes a toll.  Now, no not all days are this bad, but today is, yesterday was.  I had to go yesterday and have a secondary screening mammogram which was incredibly painful.  And it began a very immediate and steep decline of everything for me.  I, the pilot, fell into like a mental stupor by the time my bus arrived to take me home.  After the 45 minute very bumpy ride, it took every bit out of me to unlock my door, get inside, lock it, and roll down the hall to crawl into my bed.  I didn't wake until after 4 pm.  More than 4 hours later.  Didn't eat, which for me is akin to flying the 747 literally without fuel.  But, my body was too limited.  I couldn't refuel.  Couldn't.  So, I had to let the limitations have their way.  And, somehow, I did survive the day, although if you'd have asked me yesterday, I'd have said it could go either way.  Last night I slept 13 hours and I still crave going back to bed, which I will very soon.  I'm not a victim though.  I'm a survivor.  I woke up today.  I am able to keep the plane in the air.  Somehow.  I still fly.  Holy crap it's not easy, but I am in flight.  For those who don't live like I do, imagine how much easier it would be to fly with another person, and a computer program standing by to assist you at your beck and call.  Now imagine you grow used to having those there, to rely on them.  Now, imagine they are gone.  And you have the entire bloody plane on your own.  Against the vastness of the sky.

Anyway, that is my metaphor today.  I don't live in any fear simply because right now, fear would take more energy than I've got, lol.  But honestly, I have learned that fear isn't real.  And I live in reality.  The reality that is my body, my responsibility alone.  My life, to fill with riches, or to let starve.  I WANT TO LIVE.

Grateful today that yesterday's tests revealed nothing troubling.
May you have happy, happy days.  Choose to fly your plane.

Six Weeks at Chaha

So, its been about six weeks since the move.  I continue to look for the good everywhere.  I do have many of the same struggles here as I've had everywhere.  The limitations I face with my symptoms are no less limiting here.

I like my new home, I don't love it yet, but I do like it very much.  This neighborhood doesn't have the same community feeling as the one we left.  I've only met one neighbor, and that's because I walked over and forced myself on her while she was gardening out front.  I do wish some of the others would at least introduce themselves.  I miss that.  It was huge in helping me feel secure.

We've painted two rooms.  It will be a long, long process to freshen this house.  It is large.  We came from a house we sank money into and it was cosmetically lovely.  But, it isn't selling yet.  We won't sink money into this one until that happens, at the earliest.  We did replace the floors before we moved in because 1) they were carpet, no good for wheelchairs, and 2) they were 16 years old and shot.  Now, the entire house is tile, except for new carpet in the bedrooms.  It is much harder to clean for some reason.  This may be because we are still not wholly unpacked.  There are only a few boxes packed but, I don't feel all the way moved in still.  Pictures are lining the floor of the rooms instead of actually committed to wall space.

I've joined two social groups.  Well, one social and one support group.  One is a book club, which I enjoyed immensely.  The other is a fibromyalgia support group which is also a really good fit for me.  I've been to support groups before that I didn't fit with because they were at a different stage of their journey and it was harmful to me to sit and listen to "woe is me" for a couple hours.  This one has folks similar to me, just wanting to figure out how to live with this particular dance partner in the best possible way with the best possible quality of life.  I was not in good shape when I got there on Saturday afternoon.  After sitting there for 2 hours (the chairs were padded and comfy), I was shot for the rest of the day.  I'm sure it wasn't a record-breaking measure of pain, but it sure felt like it at the time.  I surrendered being "up" at 7 pm and took my night time meds and went to bed.  Things are very much the same this morning.  I did make myself "roll" with the dog since I haven't walked him for a few days.  But, the other room we were going to paint this weekend isn't happening.

I miss my few friends.  I haven't been able even to connect with them on the phone for a while, and I feel pretty alone here.  This is the first place I've ever lived where I don't have the luxury of driving myself around at all to explore things and get oriented with my new town.  So, I only go on the streets where we shop, or if  Uber is taking me to a doctors appointment.   And since the summer TX sunshine is so bold, I frequently have to ride around with my eyes closed so as to keep my migraines managed.  I am right down the street from a lovely large lake, but I don't know any more about it than what we saw when we first looked at the house.

Hopefully, I will be approved to ride the paratransit bus service soon.  The private ride services are great, I've used both Uber and Lyft.  There is always a driver within 10 minutes of my house and usually within about 5 of where my destination is.  And it is always a clean private ride home.  Courteous and kind professional drivers, a luxury.  But, as often as I go to doctors, expense is an issue.  One of my doctors is a $25 ride away.  One way.  That's what I pay for the doctor visit.  The bus will knock it down to $3.  There will be less convenience.  It will involve a large waiting window, and a non-private ride in a vehicle that is certainly more beat-up than the private Uber cars are, but, it is smarter.  I can read or crochet during the down time.  It doesn't feel right to waste the large price tag on something I can get cheaper, just because it is more convenient and more luxurious.  I am glad to know the services are available though.  If I get forgotten by the bus, which has happened in the past, I'll have a backup to call.

I have several family members right now who are struggling.  I pray a lot of the time.  I pray that they have relative health and sincere happiness.  We all have some struggle in our lives.  Something is "not easy" for all of us.  It is simply how we choose to tackle the obstacle which defines our lives, and the quality of our lives.  We can choose to put our head in the sand, to stop in our tracks never going forward, to fight the obstacle, to retreat, etc.  But, if we choose to confront it and creatively problem-solve, we can find solutions in the equation of how our life plus the obstacle will work.  Obstacles are learning opportunities.  Sometimes they are painful.  Most of the time, I feel like I am walking scar  tissue.  But, the key word there is walking.  I'm still here, still functioning.  I'd like to think I'm tougher since I have endured so much pain, but I'm not sure that's true.  What I am sure of is that I have survived it before.  Countless times.  So, when it comes on now, I remind myself of all the historical personal data which proves I can survive this obstacle.  That keeps me from panicking.  I can endure.  I've already done it before.  I know how.  Even if it doesn't feel like it, I have to trust that I do.

I'll close with my deep gratitude for yesterday's support group.  To be in a room with 18 others who are in the same boat as me is a humbling and life-affirming experience.  This is survivable.  I do have a lovely life and when I meet others who are surviving it also, it is a monumental comfort.  Maybe I'll meet a new friend there.  Thank you for these opportunities and for my mental space to engage in it.

Have happy, happy days!