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!

And the Next Chapter Begins

Our family has moved house.  We've been here 4 days now.  The layout of the house complemented by it's mature backyard trees allows me to actually enjoy looking out windows, something I haven't been able to enjoy doing since I got sick.  I don't tolerate unfiltered, glaring sunlight.  Here, I have a view of my lovely landscaped backyard all day which doesn't even show me she sky unless I go out onto the patio.  Every bit of light is filtered before it gets to me.  To me, enjoying the backyard view is like the most beautiful garden ever.  I didn't even realize how much I missed seeing grass and trees and flowers.  Our home is very near a large lake, so there is a breeze often.  Yesterday I could sit out in the afternoon even though it was 90 degrees because I was in such deep shade and there was a breeze.  It was, it is lovely.  I continue to feel very, very blessed.

I am going to try to take my time unpacking and do it at a pace I can handle rather than the pace I'd like to do it at, the let's just get it done pace.

Oscar and Evy are adapting well.  Kitty hasn't missed litterboxes yet.  The yard is chock full of birds and squirrels, which is new for him but, he is actually much quieter here than at the previous house.

I have ventured out for only one dog walk, which I did in the chair.  We didn't go very far, maybe 15 minutes away from home, and turned around.  I do look forward to a time when I am more ambulatory, and my legs are more reliable so I can walk him through the new neighborhood without anxiety about how long I'll last and if I'll make it back home.  It is a gorgeous neighborhood, to me.

I spent the first day alone here checking and re-locking the doors multiple times.  I didn't do it as much the second day, and today I haven't done it at all.  It is a larger house and quite spread out, so, I do think it will take me some time to feel settled here.

I look forward to finding a new pilates class.  I look forward to getting my own transportation independence, but that will take a little more than a month.  Forms must be filled out by a doctor, and a new doctor must be found , etc.

Many new opportunities exist for us.  New church, possibility, new knitting circle, possibility, new library stuff to do, possibility. I know the Lord will continue to be with me and strengthen me when I feel humanly weak.

My spouse is happy at his new job and even happier with his new commute.  He said last evening that he enjoyed the train ride, he could close his eyes and relax.

Such gratitude for the transition so far.  Such thankfulness for the support and prayers of those who love us.  Gratitude that even headaches continue to be manageable even when they grow to migraine level.  I am no longer disabled by the severity of them.

Have happy, happy days
Marie

The Root, and the Incident

This will be short because I am profoundly weak.  Too weak to really sit up for long and type.  Two pieces of big news.  I found out that I have a MTHFR genetic mutation, and that is the reason I have fibromyalgia.  Nothing I did.  Nothing I didn't do.  Nothing I'm responsible for.  Nothing I brought on myself.  Just in my DNA, as is brown hair and German, and many other things.  Not nearly enough mental energy now to begin explaining it.  But, I would have gotten this no matter what I did.

Second, this morning I had to be rescued by a stranger, again.  I haven't been at the mercy of the world for some years now but, it happened today and it has shaken me.  I was walking the dog, using my cane, and simply underestimated my ability.  I sat down on the sidewalk twice for short rests.  On the third time, I knew I wouldn't be getting back up.  An older man walking his dog found me lying on the sidewalk and walked back to my house (only 5 houses up the hill, I could see it) to get my husband, whose cell phone was off.  I can't fully explain how vulnerable a position that is.  I might as well have been a newborn, except that I could communicate.  I was too weak to stand when Tim got there.  Have been since, about 3 hours ago.  Had a small cry, got support from a friend.  It's upsetting, needing to rely on strangers.  For any who wonder how God gives his provisions for us, it is in these people who step up and help.  It is not in money or power or security.  It is in service to those in need.

Gratitude that I listened to my body closely enough and did not allow it to fall and become injured.  Further gratitude for those who care for me, even if it is only for 5 minutes this morning.  Thank you Lord.

Have happy days.
M

Feeling good in May

I don't have much complaining to do this morning.  T is back at work, satisfied with his new job.  The commute time is a bear but, it is doable for the next month.  He takes a train for most of it, so it isn't a stressful commute, at least.  I am enjoying my quiet house and my time with myself and God.  Also, the critters.  Slowly and surely packing my house up.  Poor Oscar, who grew up in this house from a puppy, knows something is up, but doesn't know what.  I've taken all the curtains down and washed and packed them.  Yesterday, he just sat in the living room and watched me and let out a bark about every 2 minutes.  "Um, why are you doing that?  What's going on and does it include me?"  All day he asked this. Well, he did take a break for nap time, which I'm grateful for.  I've been getting up at 6ish to spend some time with T in the mornings before he goes in, so nap time is again a must in my day.  It feels good to have a schedule again.

Trying to help him out further by mowing the lawn.  It is something he can do in 30 minutes.  So, yesterday morning, it took me at least 30 minutes to do the front and one side.  Today, in another half hour or so when the dew is dry, I'll tackle the backyard and the other side.  It is pretty hard on my body, taking in all that vibration.  Feels like I've stuck all my fingers in electric sockets.  One of those things that I have to forcibly take my mind off how it feels and focus on doing the actual task, or I would never be able to endure it.

It is telling, all the stuff we surround ourselves with to make these boxes feel personal, like our homes.  I can observe my growth by seeing what I move from place to place.  I can let things go, or decide it's not time yet.  Thinking of so many lovely objects, for me it is okay if they are somewhere else, like a store or a museum, a place where I can go see them, but they don't crowd my space.  As I grow older, the less stuff I want around me.  My poor mind feels so sluggish sometimes, and I know one sure way to help it's clarity is to keep unnecessary items to a minimum.  That being said, I do have a sentimental heart.  Maybe the thing to do at my new house is to just unpack some of the stuff, or do it slowly instead of all at once.  It's just that I like looking at my stuff.  Even though I don't have a lot of it, what I do have, I've kept for a reason.  Maybe I'll just photograph some of it, that way I can have it in my memory, but not have to keep the actual things..... we'll see.

I took a big step the other day and sent in a sample for my DNA to be tested.  I am trying to find out if I have a specific gene mutation.  If I do, it is in fact the cause of my illness.  That is huge.  To uncover the reason I have fibromyalgia.  It is almost too big for me to take in because for so long I've just had to live with it, whatever the reason.  It is a genetic flaw that has to do with the body's ability to absorb folate.  It is called MTHFR mutation.  It is a defect in the fundamental chemistry of how our cells grow and work.  It can be blamed for many, many diseases, from heart disease, to thyroid cancer, to diabetes, to depression.  And, if I have it, which I think I do, it is why I have fibromyalgia.  If this turns out to be true, the personal relief for me, even though I didn't think I held myself responsible for getting sick, is going to be monumental.  I didn't realize it until I put it in the mailbox the other day.  But I thought, just out of nowhere, "this might not be my fault after all".  I still carry around the wonder about what I did to make this happen to me.  I still think back and wonder, maybe if I'd been more careful, if I hadn't fallen that day at work, if this, if that, I wouldn't have gotten sick.  I wouldn't have lost so much.  If I can blame it on a genetic building block at a cellular level, I will feel weightless.

The tragi piercings continue to keep my migraines at bay.  A sweeter sentence never was written.

Well I have delayed the lawn mowing project long enough.  Time to tackle.  I hope I can move after.

With such a grateful heart for all the abundance in my life, from clean water to proper sewage to my sweet provider with his horrid commute, I am happy.  My knee really hurts but, I am so happy.

Short update

We are moving to a town about 80 minutes east of where we now live.  Closing on the new house will happen sometime in the beginning of June, probably.  Move in later that month.  This will give hubby a very reasonable commute.  Bittersweet to leave this home of the last 5 years, the friends we've made here.
My migraines continue to be ABSENT!!!!!!!!!!!!!!  Oh Glorious Lord, thank you!  I wish I'd known about this piercing remedy long, long ago.  If you know anybody who suffers migraines, please advise that this helps.
I am in a renewed swamp of fibro fog and pain.  Neither feels as severe as they might be but, still difficult to live with.  And my home is in a state of being packed which is going to mean automatic stress for me for a while.
Grateful for new chapters and optimism.
Have happy days,
M

State of flux

I am feeling uneasy these days.  I'm not sure why but, I think it has to do with my spouse being home all the time while he finds new work.  Things feel out of sync.  Sleep is different, what I expect myself to do daily is different.  Different in a not positive way, too.  I think that once there is a job, a steady place to go for x hours each day, that will solve it for both of us.  He is starting to feel antsy.  And, I am just trying to keep it together.  I am craving some of my solitude again.  I don't know if solitude is actually the proper descriptor, since I always have the company of my critters, but you know what I mean.  I have grown to love my alone time.  Now, like everything on the planet, there can be too much of a good thing.  When that happens, I rouse myself and make a change.  I have just a few friends I keep contact with, and chat with a few people on the phone.  But, being with another person all the time, that is harder for me to get used to this time around.  Previously, I've been more adaptable.  Now, I just feel exhausted.  Exhausted doesn't go with the other issues I've got on my plate.  It's sort of like pouring a half cup of water on a lovely plate of food.  It turns something I recognize and know how to cope with into a mess I'm not sure how to handle.

My migraines are still under beautiful control.  I do still get a mild pressure headache mid-day most days but, it is so small and slow in building that my medicine works for it.   The bittersweet is that now that they are no longer plaguing me, I am spending days in my wheelchair again.  The pain in my body is blossoming and doing small things like folding a t-shirt are now again actually a pretty major task.  One set of problems seems to have been solved, only to make more room for the other set to rejuvenate.  So, I am frustrated.  Coping with that.

I'm thankful that I recognize the difficult position I'm in and I don't just lash out at those I love in my frustration.  I never want to be that person.    Thankful that I know, like everything, that this will pass.

Have happy days.