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.

Feeling Brand New

Went to bed last night feeling a bit down and disappointed.  Spent my dreams in a trapped state, unable to change them or emerge from them regardless of waking and returning to sleep.  Slept too long and felt sluggish after waking.  THEN immediately did 90 minutes of yoga and FELT BRAND NEW!!! 
Mood is happy, disappointment is a memory, trapped is fiction.  Just lovely to be able to choose to do an activity that I CAN do which will enrich my life so much.

Have happy days!!

Cousin-blog

A place to share my collection of the recipes which have saved me and my lil' head.  
triggerfree.blogspot.com  We can call it our cousin-blog.  :)

Practicing what I know

I have been struggling for a couple of weeks with feeling lonely and forgotten.  During this winter, most of my friends and neighbors have been ill at some point and, I have kept a distance in order to preserve my health.  But, the result has been that I really only have interaction with my husband and on the phone.  I did not want to recognize the loneliness becuase it reeked of self-pity to me and I was ashamed of it.  But the fact is that what I feel is the TRUTH of me.  It is information that I can use to take an informed step.  I attached the self-pity label to it, no one else did that.  Finally yesterday, I shared these feelings with 2 people.  They discussed it with me briefly so that I knew I had been heard and understood.  No solutions were found.  But, I feel SO much better today.  I know my soul works this way but I forgot. 

Just in recognizing and, more importantly, validating what I felt, the isolation and loneliness, I was able to handle it.  It became something I could work with and mold instead of something hanging over me out of reach and menacing.  It helped me deeply to speak of it and own it.  Last night's dream was of me, with my current condition, as the most important person in a huge crowd of people.  Admired and cherished by them all.  Many went to personal trouble and sacrifice to help and protect me.  None tried to fix me, they just endeavored to make my life easier in the face of the fibro.  I woke with a smile on my face.  I dreamed myself as I am.  Loved by many and far from forgotten.  And so today, I reflect on practicing this validation of what I feel, whatever it is.  Only then can it be held and owned and dealt with.  And learned from. 

My mood is far better today.  I am still here by myself, no one is calling, but I am at peace and not missing people.  I am far from self-pity.  I am grateful for the insight and my huge list of blessings.  All because I admitted something that is normal.  Loneliness is normal. 

Forgetting the symptoms. Victory and Defeats.

It is, of course, a biological necessity that we, as humans, forget physiscal pain.  We can remember easily heartbreak.  Also, mental and spiritual pain.  But, not physical pain.  We forget it so that the species can multiply.  This is the victory for us.  The victory that keeps our species afloat. 

I have had very light and manageable symptoms for several consecutive months.  Some fraction of this is due to action I have taken.  The rest is out of my control. 

Yesterday, I could barely walk and had to resort to using my wheelchair for the first time in about 3 months.  The pain I felt seemed brand new, like I had never felt it before.  Like something new must be wrong.  This is the defeat.  I am forced to remember that this pain is my NORMAL.  I am guided by the Holy Spirit to thank God for the few months of relative relief and assured that I know how to carry this burden.  Of course, I don't want to.  But, that is neither here nor there.  And so, I go through my day that day trying not to feel confused about what is occurring.  My moments of clarity are just that, brief 5 second intervals every few hours where I can wonder what has happened to me today.  But, the clarity is gone long before I can verbalize my distress over it.  My brain is coated with a very thick layer of vanilla frosting.  Impenetrable.  I can't get through it to the info I know is there. 

I'm relatively proud of myself about halfway through the day because I have not let the pain change my mood much.  This really is a victory.  And here is another defeat.  Other people, people close to me who know about my health, ask why I'm in pain that day.  As if the months of lighter symptoms mean a cure or some healing or something.  As if I did something to bring on the layer of frosting on my brain.  As if there is always going to be an explanation for every time I can't walk.  It is incredibly frustrating and distressing to feel like I have to explain to others, who aren't living in pain, what is going on in my body.  The simple facts are that medical science doesn't really know what is going on in my body, so how am I supposed to answer the WHY question?  Yes, it is true that I do try very hard to control what I can control in my lifestlye, diet, associations, household chemicals, emotional support, etc.  I try VERY hard to prevent symptoms from on-setting and especially from getting bad enough that I want to turn to tranquilizers to get through the rest of the day.  But, I am not able to control all of what happens in me.  And on days when I can barely think clearly enough to brush my own teeth, to have a relative say, why Marie, what's going on?  is infuriating. 

So, today, when symptoms are lessened a bit and I am thinking, I pray that the Lord helps me to inform folks that I have not brought this on myself and it is important not to imply such a thing, especially at a time when it would be so easy for me to turn to self-pity and depression.  The things to be saying to me on those days are, you have gotten through so many of these days so beautifully.  Let's say a quick prayer that tomorrow is a bit better for you.  Anything like that.  But, don't ask for an explanation.  I don't have one and I don't know if I ever will.  I'm not sure how to get this message out to them.  I'm not sure they will even listen or care.  But, it is a way for me to advocate for my own welfare, my self-care.  I need to figure out how to help them know that just because I haven't complained for a few months does not mean I'm now well.  I truly do try to make the most of every second that I feel relief from pain but, I should not be put in a position to explain myself when pain returns.  JMHO.  It's demoralizing. 

Grateful to God that this too, will pass.  A distressing situation.  Sometimes constant pain seems like it would be preferable in that it would be easier for others to understand me.  But I would never wish that, not on anyone.  God understands me.  My husband, too.  A very small handful of others.  That is enough. 

New Year Progress

Went to a consult with a new GYN yesterday.  Upon walking in the offices, I smelled the air freshener.  It was a Scentsy.  Historically, this would have caused an almost instant migraine, chased me out of the building and probably cancelled the appt and searched for a new doc.  Yesterday, I was able to really observe my progress in symptom control.  Not only did I wait for the appt, the exam room I went to is the one that the Scentsy was in.  The smell was so strong.  Naturally I had a headache.  But not a migraine yet.  I was able to converse with my new doc, btw, one of the best I've ever seen, and then wait another 45 min in the lobby again for my bus to come.  Of course, I was wearing my sunglasses and nibbling on my foods to try and keep symptoms under some semblance of control.   At home, the smell was deep in my clothes, in my hair, and on my skin.  It was intense.  Previously, this would probably have led me to vomit and then bed with unimaginable pain.  But yesterday, I was able to stay awake and enjoy some time with my family.  Yes, I had to change and bathe, and wash my hair and use sunglasses and cold packs on my head all evening.  But, I still got to be with them.  A heart so full of gratitude.  I am going to call the doc offices and suggest they tone down the smell somehow.  After feeling so long like I have been robbed of so much, it is fantastic to now see that my embracing a hard change empowered me to be able to get some of my time back. 

Remember that wherever you are in your journey, later, you will have moved to a different place.  I see now that coping is not as hard for me as I remember it being in the past.  I am better at it.  More practice.