June 2014 - another random late night

I have taken a series of baby steps forward followed by giant steps backwards for many months now.  Today, I can say, I did have markedly less pain.  It feels like one extra baby step got snuck in.  But to do this, I am literally not leaving my house more than twice a week.  Sometimes, only once a week.  I do not expose myself to many other people, or even to the weather.  

There is a huge sense of loss in the fact that it is now June and I realize that last year by this time, Tim and I geocached every weekend, dozens of caches at a time.  Now, I am nowhere near being able to tolerate or enjoy that.  I rode the MITS bus to a farmers-market at least every other week.  That would be just misery this year.

I sort of feel stunned by the hugeness of the grief of it.  Everything I am missing.  everything that I choose not to expose myself to because of negative consequences.  And for me, memories of negative consequences seem to stick around longer too.  Maybe I have fewer opportunities for delightful positive ones to fill in the memory picture so the negative ones seem bigger than they are. 

I continue to really struggle with anger and sadness.  How I hate not being able to do things I want to do.  Like walk the dog, make a new recipe, scrub my kitchen floor.  Not outrageous things.  Not roller coasters.  Just regular, run of the mill life.  Out of my grasp.  

I am more symptomatic and for longer now than I have been for a few years.  I did have a sort of remission of symptoms in 2008 when I finished college and got married and went to grad school.  Maybe this year is the opposite balance of that year.  I am sitting the year out at home instead of doing really anything.  

I do not think I will grow old.  I think my body, as sensitive as it is, will be done long before then.  I don't think it will be able to handle what I have and the frailties of old age as well.  It is actually sort of relieving to realize that. I am desperate for relief.  I never thought I'd actually reflect on that topic in that way but, you start to wonder just how much pain a human being can tolerate day after day before the brain just says, OK, we're done now.  Lots of people get tortured very severely and survive. But, I don't have any hope that the torture will end.  Just that it might ease up for a bit.  I will just have to hold on to that bit of hope.  

Here's hoping for another baby step forward tomorrow.

May 2014... On being me late one night

I think we are all made of such widely varying characteristic s that it really can take many many years of practice and experiences to be who we were created to be.  There is an ideal balance.  It is elusive though.  And sometimes can only be realized during or after hardship.  This is ironic because in our civilized society we try as hard as we can to stave off hardships, despite the fact that they are growth opportunities. 

My anniversary was last month.  No one else knows the date nor would I have anyone else remember it with me.   I still always recognize march 13 almost like the anniversary of the death of a very close loved one.  I have been plugging away for 9 years now.

My illness affects me more severely than any other person I've ever met with the same affliction.  I seem to be made of two minds, or segments.  Deep inside physically , I'm like a porcelain doll, delicate, fragile, needing specific care and gentle handling.  Psychologically, I'm like G. I. Joe barbie.  Strong, tough, ready.   But eventually my physical limitations naturally reflect in my mind and soul and I end up having to re-examine what it is to be me.  I have to embrace the delicate and fragile parts, despite the fact that I don't want to.

Like everybody else, I cannot know what purpose my specific life serves in His grand plan but, I want to play my part as fully and lovingly and mindfully as possible.  Many times I am unable to be who I want to be.  I am unable to speak the way I want to speak or to physically do things I want, even need, to do.  The greatest faith is to know that these times too serve a purpose for Him and He means me to be on this path.

One of the greatest frustrations of my severe fibromyalgia is that other people in my world don't have any idea what life is like for me.  What I endure is uniquely my own.  If someone breaks a bone, has a cast or surgery, chances are that they know someone or at least of someone who knows exactly what that feels like.   When people, have flu, or strep, others can relate exactly since they maybe had it last year or in the last few.  But, the only people I know who share my illness, I met purposefully after the onset of my disease.  Before it, I never heard the word before.

And so, I am very, very alone in my struggle.  Maybe struggle is the wrong word.  Maybe fight is a better word but, to look at me day to day, I fear you would not think I'm much of a fighter.  Fighting implies strength, enthusiasm, endurance, courage.  I face most days with courage, but also with physical weakness, severe fatigue, confusion and foggy headed.  Dr L helps me bear out this aloneness by reminding me that Christ was utterly alone in the garden of Gethsemane.   Of His 3 friends there, none could stay awake and pray with him or comfort him even though he was clearly distressed and in need of company.  He was abandoned by them to fight His fight alone.  And He prayed that the cup be taken from Him.  I have prayed for that too.  I don't want THIS life.  He also prayed that The Fathers will be done.  And, in His footsteps, I have prayed that also.  Living in such isolation with more active people all around me is sometimes so bittersweet.   I am genuinely happy to see love and delight in the world.  Yet, I can participate in so little of life's joys without very high physical costs that it is hard not to feel anger.  So, I now allow myself to feel it more than I used to.  It would be so much easier if I could blame a specific source, but there is none.  So, sometimes I pretend there is one (the one varies depending on the day or whatever) in the privacy of my home and beat pillows, cuss like a sailor, and slap counter tops with oven-mitts.

I am glad for the fact that I usually over prepare for my needs instead of under preparing.  Yesterday, for the first time in some years, I found myself without my wheelchair and unable to walk.  The doctor performed an unplanned biopsy during a routine visit.  Even though I walked in fine with pokey, (my sweet quad-footed, yarn-bombed cane) I could not walk out without help.  This can have the effect of being demoralizing if I let it.  So, I have to focus on the fact that I gave those people a real chance to help someone in true need and remember from my pre-illness years how good and gratifying it feels to be able to do that.  It will be a while before I go out without my wheelchair again.  My strength can desert me before you can count to 20.  It has many times.   And when it goes, because my brain is responding to pain signals, so does some of my cognition.   This is why I do not drive.  Let me tell you what a hard thing it is to give up driving under the age of 50.

Dr L is helping me understand some of my dreams so I can really get down to how I am thinking and dealing with this illness in my subconscious mind.  There is so much grieving to do.  There will always be.  I have lost almost everything that makes a person independent from others.  I have lost pride in work well done.  I have lost hopes and dreams for myself.  I have lost my identity, my understanding of myself. 

And so, I am now working on becoming me.

Birth of FB page

Created a FaceBook page for parts of this blog.  Hope to reach more folks who have to live with this monster.  Have lofty plans to input journal entries from early, undiagnosed years.  Haven't gotten to that yet.  The next thing on my list today is NAP.  

Post by Coping Marie Style.

Committed to writing

Today, a friend of mine asked me if I ever thought about writing a biography or something.   She thought it would be interesting to read.  She is maybe the 15th person to ask or suggest such a thing during the 9 years since I first became ill.  The way that this day unfolded for me has me understanding that God means for me to do some writing.  I have such a ginormous amount to express and this is such a great outlet.  Who really cares if no one ever reads it?  I will write pretending someone finds something helpful or encouraging or ... beneficial in some way.

About an hour ago I had the longest, hardest, wracking sob-fest I've had in a couple of years.  All pure grief for myself.  No tears for anyone else or their situation.  This was about 45 minutes of just inconsolable-ness all in grieving what I have lost.  I needed it fiercely.  I don't grieve or cry nearly enough.  I do feel quite better now.  The interesting part is that it was triggered by a Disney movie.  Brave.  A movie, if you haven't seen it, about the relationship of a mother and daughter and the growing and changing they go through together.  On the surface, not something to really bring on such waterworks as I had.  But, here's the lowdown on the previous events of my day.

I had breakfast with my sweet neighbor families who I love and I got to meet my newest neighbor, 4 week old Knox, for the first time.  I held him twice.  He still smells like new baby.  His sweet head still feels like warm fuzz.  At the time I was holding him, I was appreciating him sort of superficially, to medium, not deep in my gut.  I was under such sensory battle to be part of conversations with friends, which I am sorely missing and need more now than I have in a long while.  Happy, healthy children, young ones were only some of the background noise for my brain to process.  There was also a whole other conversation going on across the room, which always sort of throws me off.  My brain seems to not be able to remember which voice it is supposed to be listening to and I literally get lost.  Anyway, like I said, I certainly appreciated him in his presence.

I had wondered if I would have a strong emotional reaction to Knox when I met him because of how severe my symptoms are and have been for many months.  The answer is that I did not have one that anybody else saw, but, boy o boy did I ever have one.

After holding him, then struggling through my day as I recovered from all that stimulation, which I welcomed by the way, I then was asked casually about myself by a new hair stylist.  Describing myself was decidedly depressing.  I quickly turned the talk to anything else I could jump to.  That evening when we were settled in on couches and it was time to pick a movie for tonight, I picked Brave, not knowing really what it was about, only that there was a female redheaded archer by Disney.

Here is how God worked in my day to help me grieve, which I clearly need help to do.  I am constantly surrounded and reminded of loss in my life.  I have lost so much that I hesitate to even think of listing it all.  But, the single loss of never being a mother, never having a baby of my own to hold, to nurture, to love, and not having that child to have the subsequent relationship with, is colossal.  Monumental.  Gigantic.  Indescribable.  Just huge, superbly, horrifingly huge.  And I haven't grieved it or focused on it for quite some time, several years in fact.  But, boy I did today.  Also, I'm not entirely sure I want to see Knox again so soon.  I feel too fragile to face a 4 week old.  How sad is that on the scale? 8.5? 9?  Pretty high, I'm thinking.

It's bedtime now and what I feel left with is a feeling of gratitude.  I do not easily let myself grieve, just as I do not easily let myself access and express anger.  They are emotions I need to make some efforts express.  I know how important they are and that it is critical I not try to suppress them or deny myself their legitimate place in my world.  Still, its hard for me.  And so, my Lord, my Savior and Hero, stepped in and arranged my day so that I could genuinely, privately, grieve the horrible void I live with.  The void where a child should be.   My grief so desperately needed to be expressed.  He forced my hand and of course I heard Him.  Cry, Marie.  Just cry for a while.  This is not yours.  It was never yours and it never will be.  It is lovely and joyful and beautiful and you can never have it.  Cry for your loss.


And so I did.  And I need to mention crying often brings on a headache, but not this time.  This was pure grief.  Not complicated by any stressors of this world.  Not related to my health or any relationships or their issues, etc.  Just comforting my own spirit's sadness.  Pure.

I am going to make an effort to write at least twice a week.  Not really sure any of it will be worth reading but, I guess if even one person feels more normal or connected to the world because of it, that will be worth the typing.  I will go through the notebooks and journals I have kept since I became ill.  I will try to organize them such that they are introduced chronologically.  I want my experiences to make sense.  Or, maybe I could present them as flashback bits.  Who knows?  Maybe that's some of the good of the writing experience for me.  The unfolding of the road ahead.

Have a lovely evening.  If there is anyone around who you love, go tell them that you love them.  If there is no person around, know that you are held in the palms of the hands of Our Father and that His love for you is so great as to be not understandable by our measly human brains.  Feel the peace of that.

After tragedy....

I feel overwhelmed by what has happened in our country and the world this week.  First, it is late and I have already taken my nighttime meds so, this may get rambly.  Second, I can feel myself, my mood drooping down like a plant without enough water.  Third, I don't know what the answer is to sprout back to myself.

In West, TX, only about 75 miles from my home, a huge tragedy has occurred.  I want so desperately to help.  Even help only one person.  Yes, I'm praying for all.  But, I want to DO something.  I want to take action.  Prayer feels like not enough, although it is the ultimate, I know.  I feel uninvolved in my community and unable to assist when my heart wants to help.  Limited again by my situation.  I want to motivate groups to donate and find a person with a truck and drive down supplies.  I want to foster a displaced pet.  I want to HELP.  But, I'm not actually able.  It sucks.  One more thing in life that I have to come to terms with being denied. 

When I have good days, I am so bright and well spoken that I could easily organize gathering of household objects and clothes in my own neighborhood, gather them in my home and find a neighbor with a truck and pay for gas to haul down to the site.  Maybe bring home a temporary guest in the form of a homeless pet.  I would be all over that. 

But, it is not in the cards for me to get to participate that way.  I have to be satisfied in just praying for them and trying to do nice things for every person I encounter.  That will be my way of helping.  Trying to spread some cheer.  I feel inadequate tonight and like I don't have anything of any importance to contribute.  This feeling doesn't come over me often and I hate it.  I usually have quite high self esteem.  Not today.

And also, another ugly and selfish truth is that I am so scared about my own safety if there were ever any emergency near me.  I would need to be cared for entirely.  I would be just as dependent as those nursing home folks were in West.  That is a humbling and depressing realization.  And it cannot be changed.  It is what it is.  I have to cope with it.  I am young enough and sometimes sharp minded enough to think of clear viable ways to contribute.  Yet, in the next few minutes, all that strength of relative youth and mental clarity are gone, just gone and I need to be cared for entirely.  It feels more than a bit cruel tonight. 

I added an extra 20 mg to my antidepressant dose today and indefinitely.  I have doc's permission to do that.  This thing has struck me hard.  Maybe becuase it's so close.  I'm not sure why.  Maybe because I'm so limited. 

Have a bad headache tonight that I know is due to the tension of my body and neck, not being able to relax. 

Dear Lord, help me to truly understand that prayer for others is enough from me.  You do not mean for me to overextend myself and risk my own health.  You guide me toward wanting to but, I must interpret the deep faith I have that you will intercede as I pray.  I have to find satisfaction in that even though it is difficult since I'm human and I want, I crave actions.  I will do kind acts in small ways in my own little world and pray that you help those small kindnesses to spread all the way to West.  I will commit to that.  You know my heart.  You know my true sadness as to what they feel.  I want to comfort.  I weep for others I do not know.  For their loss.  Gather us all in your mighty arms and comfort  as you carry us through this time.  Amen.

Accomplishments

I'm talking about small tasks of daily living here.  Not what pre-fibro Marie would consider actual accomplishments.  For example, getting a load of laundry through to the end so it is in the closet or folded in the drawer.  Going out on the bus to a doc appointment and making it back home.  Giving the dog and cat clean water and food. 

Blessedly, I no longer hold the bar for such activities higher than I can reach.  It is about an inch over.  An accomplishment is just finishing to my ability at that time.  It doesn't have to be pretty (we are not a magazine photoshoot), timely (not a newspaper), effecient, (not whatever needs effeciency), graceful, or even complete.  Today is laundry day.  Historically, I know that the amount of laundry my home makes can be done and finished in a day.  I have done it before, so I know this to be true.  Today, however, I will feel accomplished if I get some of it dried and out to the loveseat.  I have no plans whatsoever to complete it.  I don't even have plans to try folding anything.  I don't have any kind of goal.  I will just do what I can and be grateful for that accomplishment. 

I will not feel sorry for myself.

On Wednesday, I will board the bus with my lunch, go to my doctors appointments, I have two that day, and my goal will just be to get home in one piece.  Very low bar.  I have no aspirations to get home feeling comfortable or without a headache.  I don't even plan to be able to communicate very well to my psychologist.  I will just do what I can do.  The rest will be taken care of by God, if it is His will, or not.  I will accept the limitations I find with peace.  I will not be saddened by them or deterred in my accomplishing tasks.  Making it safely home is my goal for Wednesday.  I have handled crises in bad shape before, and it is not ideal but, somehow, I come to the other side.  He carries me.  Praise Him.

Hard days

Today is one of the days when sometimes I long for consistency.  Humans love consistency.  I crave being able to rely on my body but I can't.  I can rely on it for being unreliable.  Sometimes that is the hardest part.  Part of me longs to be at whatever plateau of health and just to stick there so I know what I'm capable of and can better predict what kinds of things I can comfortably do.  The other part of me, the grateful part, is truly thankful for the good days when I feel relatively well.  It's just hard to fully express how disappointing and distressing it is when the change happens.  And even now, eight years after the onset, I feel the need to try to explain the change to whomever speaks to me and asks.   

I'm missing worshiping with people.  I'm missing volunteering some time.  I'm missing my family.  Missing a lot right now.  Need to find a few things to smile about.  Science says that when we smile, it releases chemicals in our brains that make us happier.  Neurochemical transmitters are on the lookout for those smile muscles and go into action to turn the smile from a forced to a natural state.  Need to do some smiling now.