Loss

Death seems to have hit my life in a spider-webby sort of way.  Or it has this summer, anyway.  I lost a member of my family of origin, the first member of that family to pass, and the closest person to me who has died. In addition to that death, I am aware that 4 people I know, 3 very well and 1 as an acquaintance, have lost dear animal companions.  Further, an online friend lost her mother suddenly.  My mom reports that Monica's husband's aunt passed last week.  (Monica is my dear sister who now guards me as an angel and began that job on 7/12/15.)  And yesterday, my brand new friend told me that she was visited by the police and a pastor who informed her that her mother had been found on the floor in her Florida condo.  She couldn't reach her mom on the phone on Thursday and started to get worried.  And for good reason.  Her mother had indeed died alone in her bedroom.    So, if we are arranging these angels now, we have 4 people and 4 animals in the span of about 3 weeks.  For me, that is a lot of loss.  Now, obviously I will not grieve for the folks I never met, nor the animals, but it does make my heart hurt a little.  And my heart is very beaten up from the loss of my baby sister.  I actually wish that I didn't care quite so much about anyone else's loss, the tangential ones but, I do.  And that is part of me.  I know how sad those people are.  I know how frustrated they feel and how unfair the situation became.  And I feel it.  Some of it is quite close to me.  I find myself praying for comfort so often that I have begun feeling selfish during my "prayer conversations".  I force myself to focus on some issues or events or people eliciting my gratitude.  I can do that, fairly easily, after I instruct myself.  But, forcing it is unusual for me.  I love being mainly thankful and not so wanting from our Lord.  I won't beat myself up too much about it, remembering that I have to walk through this grieving valley and He wants to comfort me, its not a special treat or something.  It is wrapped up in the combo package that is His love for me.  But, it does feel uncomfortable.  And in a few days, I will physically face everyone in the world who loved my sister, all of us grieving our individual lost relationships with her.  I feel stable at home here now, writing about her and reflecting.  But, when I see the pain on the faces of my parents, that is when I know I will need the Lord the most.  It is easy to sit here and tell myself that she simply finished her journey.  But, it will take some time before I can look at a photograph of her and not weep.



Grateful that she was loaned to a family in which I belonged.

Wow, what a fog

Now, under what's considered normal circumstances for me, fog is something that I adapt to without much hardship anymore.  In the beginning,  the mental fogginess of fibro was truly scary because I remember wondering if I'd had a stroke or something.  But now, I just know to take necessary measures to keep myself safe from injury and I try to minimize whatever stimulation I can so as to not get even more confused.  It no longer really alarms me, it just is what it is.  It is debilitating so much at times that I did give up driving.  So, that's a lot.

Here is how yesterday's fog compares to my regular fog fare.  First, know that I am grieving right now.  I am losing a sibling.  She is not yet gone from this world, but I have said goodbye and I find myself sobbing spontaneously wherever I am, doing whatever activity I happen to be engaged with.  The loss of her will be the closest person to me to be lost and it does feel surreal.   Yesterday, I left my stove on for 4 hours.  Yup.  No, not a gas stove, so no flame.  Just burned up a teapot. ( I have a kind that doesn't whistle.)  I would say that in regular fog I sort of swim through brownie-like batter (might as well have yummy descriptions, right?) mentally.  So, ok imagine that.  Now, I find myself sludging through a pot of yesterdays breakfast oatmeal still in the pot on the stove.  There is a whisper of moisture for me to try to grab on and swim/push myself through but, really, after only one step, I'm so exhausted that I could literally sleep.  Oh, and also, in the brand new spot, I now have no idea why I'm there nor how to navigate anywhere else.

I was speaking with a woman at our insurance company the other day, and for maybe only the second or third time in my 10 years with this, Tim came over and just gently took the phone from me and took care of the conversation and issue.  I simply could not be understood, not by the woman on the other end, nor even by him, and he even speaks Marie-fog (well, he doesn't speak it so much as he is fluent in understanding it).

Do you see the problem?  It does not bode well for one's safety when one is so stuck, so surrounded by the inability to even recognize the familiar.  No, it is more the lack of understanding outside stimuli in any sequential way.  Puzzle pieces do not fit.  None of them.  At all.  In fact, I've got about 10 pieces each from about 50 different puzzles to try to get some coherent understanding of my immediate future from.  I can do something tangible.  I can physically crochet.  But I cannot talk about what I'm making or why.    I can physically get food out of the refrigerator.  But I cannot figure out what to eat among that food.  There are just random containers of stuff sitting on the counter.
I can call a loved one with a specific fact in mind to convey, and I am only successful if I write it down on paper and read it.  Yesterday's oatmeal is just not a place you want to find yourself.

I'm a pretty decisive personality.  Historically sometimes, too much so.  I decide to act, and then there is no going gently, I act.  I am used to that kind of behavior and I'm good at it.  Now, I find myself  walking, and then standing in a room with no idea why and still unable to decide what to do about it.  I stand there just looking around that room for who knows how long.  Should I stay there?  Leave?  What's up with this room?  Anything good going on in here?  Why does it even exist?

I know fog during grief is common.  I also know that for me, fog is one of my regular fibro symptoms.  But, for the measure of grief I now bear, the fog will be deeper and darker than ever before.  And I predict it will last a long time.  I will miss my sister for the rest of my days, even though she is not yet quite gone.

Brain damage

Well, I just read an article with so much validated research that I know it is proven.  So, there is no question of its truth.  Here is the point.  Fibromyalgia causes brain damage in people who have it.

               Researchers found that in people with chronic pain, a front region of the cortex associated with emotion fails to deactivate when it should. It's stuck on full throttle, wearing out neurons and altering their connections.

http://www.sciencedaily.com/releases/2008/02/080205171755.htm

Now, that is quite a depressing thing to read.  How can it not be?  They've proven that as much as it sucks living through the pain, doing so actually damages my brain.  Hmmmm you say.  Why bother to keep showing up?  I know that sounds drastic, and I am by no means near that kind of thinking but, come on, it is high time that the world stop judging or assessing "what we are going through" because frankly, they are going to come up short every time.  For one thing, every time, my brain will be damaged a bit more.  Also, how could anyone feel what's inside the very private vessel that is me?  Impossible.    

Think about that one line for just a moment.  "Stuck on full throttle."  So the first thing that comes to my mind is a car.  A car stuck on full throttle is a disaster waiting to happen.  What else has throttles, maybe an elevator?  Well, the floors are going to stop up there somewhere or down there somewhere.  How about even my electric toothbrush?  It will burn out and I'm imagining smoke will be involved if it stayed stuck on full force.  Here is the point - anything stuck on full throttle will end abruptly, permanently and probably very messily.  I cannot think of a single exception.  Nothing, not any man made device or machine, nor any animal I know of can sustain being "stuck on full throttle".  It hands my mortality to me on a plate.  Huge questions arise about how damaged my brain will be when I'm 55 or 65.  After all, medicine cannot treat the root causes yet at all.  They are just now figuring out how it effects us.  It is quite a thing to read about a disease you live with.

So, how to bring this knowledge into my soul cohesively?  How to embrace the damage to my brain which is happening every single second of my life.  There is an answer.  Just give it to Him.  There is nothing else I can possibly do.  If I am to enjoy any of the life I'm given by Christ's sacrifice, I have to also let Him help me carry this burden.  To try to carry it alone, that would be suicide.  And, for those of you who know me very well, you know I do not use that word lightly.  I would never.  

Today I pray for folks with pain like mine who are not close to the Lord.  I pray that they can find their way to Him, that they are guided in His direction and develop a "besties" relationship with Him.  Without Him, how could I actually face each day?  Really?  I mean, full throttle always?  Come on.

Thankful that I was raised in deep faith which comforts and nourishes me during all the moments of my life.  Even, and especially during the brain damaging ones.  

Have happy, happy days.

May

It's not that this month is uneventful, I am just having trouble grouping everything that's happening into their proper sections and figuring a way to write about them.

First, could I just say how fantastically GRATEFUL I am that my health is standing up to these last 3 tornado warning evenings without quality of life loss.  I've been able to be not only up and around, but not at all unhappy or more than medium discomfort.  This has never been the case for me before when there is severe weather.  Once, it actually robbed me of the ability to think of words to ask for help, which is quite scary, let me assure you.  Tonight and tomorrow are supposed to be more of this same kind of weather.  Its already rainy and stormy here, which began this morning, and I still feel decent.  Not in a wheelchair.  Not reaching for medicine.  Not in tears.  Basically, just LOVING LIFE.

Okay, now that that is covered, I think I can cover some other stuff without minimalizing my current situation.  I had a super lovely vacation recently with a dear relative.  I reached out to her during the time several weeks back when I felt so utterly lonely and she set this trip up for us.  Such a beautiful gift, these puzzle pieces that make up our hearts.  I now have a fantastic friend in her, as well.  I hope she feels the same.  It was a much needed change of scenery for me.  And, at the end, there was a little "brain injury" mishap on my part but, the concussion seems to have healed now and I've managed not to get another while symptoms were still on the burner.  Apparently, as long as you don't sustain another until the first one has had 7-10 days to heal, or you have no more symptoms, your brain heals from them without problem.  So says the ER doctor.

Also, a lovely bit about sustaining the "brain injury" is that I was entirely bed bound for about 2.5 days and I only got out with help to sit in my wheelchair and then have to be pushed and have help getting onto the toilet.  So, needless to say, my spouse was vital in my care.  And, we managed.  I can't remember having anyone at my beck and call like that before.  We have walkie talkies which were put into use, only because I just hate yelling.  I hate hearing it and I hate doing it.  He brought food.  He moved heating pads and brought warmer socks.  He kept the animals in food and water. And, I have to say I was honestly tempted to continue feeling "brain injured" longer than I was because, I really just wanted another day or so of the hand-maiden stuff.  When it came right down to it though, I've been up doing stuff, taking medicine, alternating with rest for several days.  It feels like horrible karma to take advantage of a caregiver for even an afternoon.  Folks who care for the sick are often changed by it psychologically and I'd not want that on my conscience.

Enrolled as a Wellness Advocate for doTerra essential oils.  I've done this really as just a partnership for my little pendants.  That way I can sell folks little samples of different oils and they don't have to dish out like $30 for a small bottle of oil, just to find out that it is not the one which works for them, or their family.  The direction that our health care system is heading frankly scares me and I want to keep as many chemicals as possible outside of my house and body.  The scents of nature are powerful.  Last night, I found that my mood changed about an hour before bed.  I couldn't figure out why, either.  Nothing had happened to cause it yet, I was in a bit of a funk.  I used two drops of a blend called Elevation on the insides of my wrists, like I would for perfume.  It smelled very good at the time I applied it.  But as it was absorbed by the pores of my skin and my personal chemistry mixed with it, IT   SMELLED   DELICIOUS.   Like, I wanted to just lick my arms, delicious.   It is hard to be in a funk when you think you are completely YUMMY.

A few folks in my world are struggling with symptoms of illness these days, and I witness some of these and hear about others.  It is truly a helpless feeling to watch loved ones suffer.  Growth is hard.  That's why when kids have growing feelings, those are called pains.  I think most all illnesses which are chronic (and these I'm referring to are) must be grieved, like any important loss.  And one of the steps of grieving is acceptance which is sometimes confused with resignation.  Resignation to me has the ring of surrender.  I am laying down now.  Just go on and run me over.  But acceptance, that means, okay, I get that things will be different, but, I'm not going to stop living.  I will figure out how to live differently.  I can still go on a cruise to Alaska, even though I have to do it differently.  I can still hope to see the Grand Canyon someday.  I can still offer compassion to others.

This is from my Minute Meditations and it struck me as so so true today that I want to share it.

In this life you now perceive great value and beauty in things that formerly you turned away from: poverty, suffering, even illness. You now understand that in the poor and lonely you behold the face of Christ. And in difficulties such as illness you see the means for you to do as Christ bade you: to take up your cross and follow him all the way to heaven.

I was one of those people who perceived value in beauty.  In abundance.  Now, I am the other kind of person.  Frankly, I wouldn't change it for anything.  It so delights me that I have tears.

In deep gratitude that I know myself.  

Have happy, happy days.

New venture

Officially launching the FaceBook site for my essential oil terra cotta pendants today.   Uploaded pics just last Friday and have sold 6 since then.  So, now I have photos of them each, and cards, the whole deal. Gratitude for the mental clarity to take this creativity into something that will at least pay for itself.  (Unlike my yarn art.)  Feel pretty delighted that it is raining now, and has several times this week and my symptoms are minimal.  Yes, that's what I said.  Minimal.  I can walk independently, speak coherently, all the stuff I sometimes lose.  So, I am trying to just enjoy it and not really focus on whatever it is I'm doing that's right.  After all, it could be due to nothing I have acted on at all.

Have happy days!

Since last time

Well, its been a bit since I've written.  I've had a few realizations since then.  Also, my symptoms weren't that bothersome for some time until about 3 days ago, so I used the time to do things at sites other than my computer.

For a bit, I crocheted since I was working on a charity drive and our goal was to do as many things as possible for whatever charity we personally chose.  I sent 12 hats and a dozen or so bracelets and necklaces to the Battered Women's Foundation of Fort Worth.  Then I got started on slippers for my sister and a hat & scarf set for my sister-in-law.  I love to work with my yarn.  I especially love when I find a pattern with a stitch that is soothing rhythmically and doesn't require a lot of counting.  I haven't been crocheting for very long and have only had individual instruction once so, I think I'm quite good, considering that.  But, when I have to carefully count specific stitches and gauge is critical, that's when mistakes are made, especially by folks like me.  Let's just say that one of Moni's slippers wasn't exactly the same color throughout.  Very, very, super close, but not exactly.  So, I call it a one-of-a-kind uniquely crafted piece of fiber art made for her very own foot.  (It's a handy thing being good with words.)  I am trying to improve, but not in any goal oriented way.  I can produce better results if it is all I'm doing but, then the book has to be turned off.  I can do it to music of course but, I'm sort of addicted to stories so, books are my thing to listen to.

Then I cooked for a bit and refilled my freezer with enough prepared stuff so that I don't scramble for dinner.  I know it shouldn't seem like I'd ever scramble for dinner since I'm home all day and can take my time choosing what to have or make but, not so.  I don't handle the last minute pressure of him being at home already and asking what's for dinner.  If I don't have an answer for that, it freaks me out a bit.  Also, I think because he doesn't cook, he doesn't get that raw meat (and really cooked meat, too) thawed in the microwave is less desirable than if it were left to thaw at room temperature.  Or, it is for me at least. Anyway, I usually take something out of the freezer and about half the time he doesn't feel like having that.  He never complains.  He is very happy eating something else.  But I am left feeling like I did it wrong.

Also, in the last month, I discovered I am an empath.  (I think there are people out there who would say this was "New Agey" and not a real thing, similar to psychics.)  It is not the same as being psychic.  It means the ability to feel is enhanced, which actually makes sense with my particular disability.  A friend brought this to my attention.  I had mixed feelings about this for a couple weeks and it was hard to come to terms with.  I didn't doubt it, when the books I got described types of people, I'm one of them.  There's no question.  So, the thing to do about it now is to make sure I continue to pay careful attention to whatever and whoever in the world has access to me, stimulation wise.  Its unhealthy for me to just wander through the world like most folks can.  I have to do things and go places with deliberation and purpose, or not go.  And, I have to choose folks to be in my world by their quality and peacefulness.  Since my world already involves so few people, it is likely that when my energy is depleted or changed for the negative, it is due mostly to environmental causes or to hanging on energies in the larger world around me, both of which I don't have control.  I will try to work on constructing any further mental barriers which could help separate me from feeling too much.

I spent some time making terra-cotta essential oil pendants this week.  It was a brand new creative endeavor for me and I LOVED it.  It was surprisingly delightful to sit there with clay and create.  I have posted them for sale.  The trouble is that if I do it for maybe 2 mornings about 2 hours each, I end up with a couple dozen pendants.  They are going to pile up quick at that rate.  Unless I find a Massage Envy who wants to put them on their front desks for sale, I doubt I will be able to get rid of them as quickly as I'd like to make them.

So, that's a quick catch up of life inside me.  I had some very down days not very long ago.  But, I floated up as the waters rose and felt better.  Had a couple lovely "play-dates" with other women friends, which I don't get to do often enough.  That was overdue.  And entirely enjoyed

I have decided I am going to try to describe my days differently to you.  Previously, I have used the words good and bad as descriptors for how I felt each day.  That's value based and sets me up for feeling some blame when all I did was wake up with severe symptoms.  So, I'm going to try out other things like "I'm not symptomatic today  or  Symptoms are severe now".  Maybe I could try "Life feels difficult today or A piece of cake day".  If I can remember to do that and retrain my thinking, I bet I would feel mentally better on days I'm currently calling "bad".   Today, by the way, is a difficult day so far.

Grateful today for plans to get away soon with a dear, dear loved one.  And deep gratitude that I floated back up when the waters rose.

Have happy, happy days.  They're the only days we get.  Don't waste them.

Definitely darker

There's a weird sort of thing that happens with my symptoms.  It is understandable from a birds-eye view but, I am not a bird.  I am having to live it.  So, its a bit harder to wrap my head around and sort of get the firm grip I need in order not to sink.  Here goes.  So, severe symptoms like pain, or migraine, or massive fatigue limit everything I do when they are present.  I adapt to include them into my life since I have no choice but to do so.  Part of adapting means that I am limited as to where I can go, the independent freedom to go when I want, and the energy of participating in some event.  So, as adaptation, I have learned not to make too many plans.  They are too frequently cancelled and/or changed.  I know that large groups of people cause an unhealthy reaction in my body, so again I avoid places where these groups might be.  I am extremely sensitive to certain vibrations and smells, and noises.  More things to avoid.  I don't drive because it isn't safe when I am symptomatic, and I live with unpredictable symptoms.   These changes make sense when symptoms are in place.  However, lately, the last few weeks, symptoms have not been overly bad.  I find myself left with what feels like a shell of a life.  Unfulfilled.  Lonely.  I have lost so much of what I'd want to be or do that when I can contribute or participate, the doors are already closed due to symptoms.  Even if I can go to a place where a lot of people are gathered, and it may be a bit noisy, maybe a neighborhood social event or whatever, I am left feeling like I don't belong there.  I've already adapted it out.  They don't know me and are so busy with the people they do know that they don't have time to get to know me.  It seems darker here, in this place.  This life that feels a bit like a shell today.  Sometimes, when I have been symptomatic, I can recall feeling like life is on hold.  Like I'm just waiting it out for "this" to pass so I can get back to..... to what?  Well, to doing nothing, really.  I did get some very sad news a couple days ago that I haven't yet processed emotionally, and certainly that has a component on how dark things look for me today.  My personal triangle remains the same.  If I'm not in pain, I am fatigued.  If I'm not fatigued, I have a migraine.  If I don't have a migraine, I'm depressed.  So, just finishing out the cycle with that last one.  It's a very scary one.  Physical pain is super easy for me to tolerate compared to pain in my heart and soul.  I know for SURE that that will pass.  This just feels bigger.  It feels like someone has taken a huge old moldy woolen blanket and thrown it over me and I can't find any corner to lift it and get light.  I'm trying to find an edge.  But, I keep dropping it or not being strong enough to lift it.  I have a lovely life.  Even as I type that, I find that I cannot smile about it.  Problem.  I have a spouse who is ideal for me and treasures me and, still not smiling at the monitor.  Problem.  I have the affection of two sweet animals.  Stone-faced as I sit here.  Problem.   I am grateful in theory for about a billion things in my world and yet, I feel empty.  I have adapted so many fulfilling things out of my life that now, when I am not fully symptomatic, I am left empty.  I am waiting for symptoms to come so I have something to do.  ??  Could that be possible?    What I have just written confuses me no end.  If you are confused as well, then I guess I made my point.  This whole thing is just so much NOT straightforward and I lack the mental energy necessary to connect the proposed dots.  I just do.  That is all.  Going to bed now.

Grateful for the bedtime yoga sequence that calms me and has improved my sleep cycle.    Thanks, Adriene.