Today, the border of darkness

I have an overwhelming feeling of apathy today.  I don't like that.  I have felt it before and I know which road that sometimes leads me down.  A dark road.  A road that convinces my subconscious to bully me into accepting blame and undoes any belief I have in myself.  The really troubling thing is that on that depressing road, there are just a few ways off of it.  We all know there is obviously a permanent solution to that depressing road.  I am not interested at all in a permanent solution because I KNOW my problem is temporary.  The other ways off the road are medications, which I already take, and cognitive therapy, which I already engage in.  I would not call my mood today depressed, but, it is on the border, closer to depressed than not, and I am uncomfortable with it because, I am already being treated for it.  This could mean maybe my medicine needs to be adjusted.  Maybe I need to increase the frequency of  my psychologist visits.  Or maybe it is just due to hormones, in which case, I may feel better in a few days.  I wish I could know.

I face so many unknowns.  I realize everyone does but, I face them from an angle of the underdog, as it were.  I don't have independence.  I don't always have benefit of my own mind, my own brain.  I don't have control over when I will be overtaken by symptoms so severe that they steal my speech from me.  I have no idea when or where this will happen.  I have tried over the nine and a half years to figure out when and why and where but, I just end up frustrated.  I do control what I can.  I understand some of the stimuli in our world which are triggers for me.  But, I have internal chemical triggers too, which I cannot control or predict.  Also, there is just the weather.

I envy folks who feel capable.  I remember that feeling and looking back, it really is complete freedom.  Like taking flight.  You can do for yourself whatever you need.  You can also do for others so as to fuel relationships which are sustainable.  I would never have thought that at just 45, I am not capable anymore.  Rather, I'm not as capable as I was, or as I'd like to be, or  as capable as most other 45 year old women.    Yes, I am more capable than some but today, I want to allow myself to focus on what I have lost.  I think I don't do that enough.  I force myself to look to the optimistic angle, knowing things could always be worse for me.  But, I also need to acknowledge the reality of who I am now.  I need to recognize and honor what is lost.  How profound the loss is, and, for all anybody knows, how permanent.  I am quite young to have lost so much.  The loss took place when I was 36.  That is not very much of capable adulthood.  Not enough.

I envy folks who can look forward in their lives.  They have events which will happen that will be milestones.  I do not.  I will not retire.  I will not watch a child go to college.  I will not watch a son or daughter get married.  I will not hold a grandchild.  And these cannot be hoped for.  They are given facts.  I hope instead for things and environments for those I love dearly, not for myself.  I hope my siblings can all retire, happily, at an appropriate age, and with health.  I hope my nieces and nephew find love, real respectful, life-changing love.  I hope my spouse has a fulfilled life.  (This nags at me today since I am feeling downish.  I know by the fact of being married to me, his life is limited, too.  He professes that he is happy and content and I believe he is.  But, I cannot help but wonder what kind of man he would be with an able wife.)  I hope my parents keep their health and their minds for as long as God wants them with us.  I hope no one I love comes down with a catastrophic disease.    I wish I could say that I hope for a cure for my illness but, in truth, that is too terrifying to do.  It opens my heart too wide and I just cannot bear it.  I think I have had just one too many heartbreaks than to wish for that.  What I do hope for, for myself, is never to become seriously depressed again.

So, it is clear why I am a bit bothered today.  This is the opposite of what I would like to feel.  I don't really feel sad or angry, I just feel, well nothing.  Many days, I'm so full of gratitude, love, joy, delight, that to have a day where I feel none of those and in fact cannot make myself smile, that is a marked mood change.   I will take steps today to really measure and observe how I am emotionally and I will try to truly understand what is going on.  Maybe I really am just lonely.  I have told Tim several times this week in the evenings or afternoons how glad I was that he was home from work.  Loneliness is a killer.  I can be alone.  I can do that with the best of them.  But I, like everybody else, am a social animal.  I crave contact with others.  And I don't have enough.  I live with a constant deficit.  Maybe the deficit is continually there because of how much I limit myself and my exposure to potential triggers of horrible physical symptoms, maybe not.  Maybe it is just really hard to be on the other side of a meaningful friendship with me.  I don't know.  I can't stand in those shoes, though I wish I could, just so I could understand.  

I feel like I'm an old person, reflecting on the times in my life when I was vital and capable.  Just 15 years over the age of 21.  So those few years are all I dream about at night, those specific environments.  All I have to remember.   That is not to say that I haven't done anything meaningful since the onset of this illness, I have, and I'm proud.  But, it would be a lie to say I don't feel forgotten.  Almost what I imagine it would be like to be in a nursing home, just sort of left behind, while the rest of the capable world gets on with what they are looking forward to.

I want to snap out of this apathy and so I pray that I will.  Lord, please let Your Holy Spirit fill me and comfort me.  Help me look toward you when I crave looking toward some earthly situation.  Help me feel fulfilled in knowing how precisely special you created me.  Help me know I am fulfilling a purpose unknown to me but critical in Your plan.  Help me to smile again.  Amen.

Thanks Mike!

I giant THANK YOU VERY MUCH to my admirable and considerate brother Mike who challenged those who know me to donate to fibromyalgia research.  The good solid cry elicited by reading your words in support of us fibromites was needed and now I am left feeling more peaceful.  I had whined previously in the week on facebook about how, being grateful that I don't have something worse, God forbid ALS, I do hope that someday there will be an ice bucket or some challenge for us.   I was jealous.   We need research too.  And Mike answered the call, the prayer.  Bring awareness.  Tell people.  This disease is apples and oranges from ALS and yet, the Marie I was in 2005, is dead.  I have grieved her loss and I do still.  The new Marie lives, copes, adapts but, this illness shut down much of what was my identity.  And I do not exaggerate when I say that I cannot imagine that it will never go away.  I can't think that way.  The depression involved is debilitating.  I don't think much past the next few weeks.    I don't plan much.  I don't hope for much.  I do have a great handful of medical professionals guiding me through life, and I am blessed with a small but solid support system.  I am blessed in so many ways but, I also have awoken in the morning, and been sorry that I did.  Facing pain is hard.  Really hard.

I am looking forward now to the first big vacation since my onset in 2005.  We always just go to families homes and spend time with loved ones or staycations.  I have been fearful about how I would  fare in different situations, different sleeping arrangements, different diet, temperatures, etc.  But, now, finally, 9 years in I am no longer afraid.  It is true that the cruise is a giant unknown but, I choose to have curiosity instead of worry.  I don't know for sure that I won't be able to constantly feel the boat engine.  I mean, I can feel the electricity inside the wall next to me so, you'd think a ginormous engine may bother me.  I don't know for sure that I will adapt in a timely enough manner to the temperature of the Pacific northwest and the Alaska coast that I will be able to enjoy the environment.  I don't know that all the other ladies on the ship might not be bathed in migraine-triggering perfumes when it is dinner time.  I just don't know.  But, I have made the decision not to be afraid anymore.  We have never been on a cruise, and frankly neither of us ever imagined needing a passport but, in a couple weeks, we will be off.  And I am so excited.  Not worried, just wondering how I will problem solve.  So when I wrote above that I don't plan much, this cruise, planned 6 months before, is new.  It is a risk.  It involves some hope.  Some faith.

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Love and twitches

It's 4:48 am.  I woke at almost exactly 3:30 screaming.  This has only happened a handful of times in my life and only two or three times since I've lived with Tim.  He came to me from his room, 4 rooms away, to see that I was OK.  Then he climbed into bed with me and held me and chatted with me about whatever TV we watched last night or how much we got the cat to eat or whatever for about 10 minutes.   I apologized for waking him and he said he was already awake but, I'm not so sure.  With a long body pillow in between us, he held me.  I have to sleep naked, I require it.  I cannot bear to have anything touching my skin except socks and mittens/gloves.  In addition, I cannot bear to be touched by him, or have his skin next to mine while I am trying to sleep.  It just doesn't work.  I am too sensitive to the stimulation that my body and brain cannot relax.  He gets this.  So, for about 5 minutes or so we just lay there together, him holding me, me feeling blessed that my husband would come to my "rescue", knowing that I am loved and truly cared for.  He gets up at 4 am to start his day, so for the last 10 minutes or so, he was sort of dozing off, snoozing a bit.  This is when the real trouble starts for me.  My sensitive brain goes into hyper drive.  Even light snuffles sound like the loudest snores, and the twitches, don't get me started. As he falls asleep, probably as do many thousands of normal functioning bodies, he twitches during that light phase before he gets to deep sleep.  And it makes me crazy.  CRAZY crazy.  I simply cannot tolerate it.  But, I knew his internal clock would get him up and into the bath at 4 am and that for 10 minutes I would make myself  tolerate it.  I would lie next to this man who rescued me and subdue all my reflexive reactions to get away from the stimulation and just be grateful.  Grateful for the twitches because, should I outlive him, I will surely never feel them again.  Grateful that someone in this world so loves me as to rush to my aid across the entire house in the middle of the night.   It was a long 10 minutes of gratitude but, I endured.  Mind over matter works but it has limits.  After all, it was only 10 minutes, and I would not have asked him to leave, I would have just put on a robe and wandered out to the couch or something.  But, after he kissed me goodbye for the day and left at 4am, I was suddenly so aware of how alone I spend my nights.  I so miss not being able to share a bed with him.  Not being able to snuggle.  We are naturally limited in our intimacy as any couple is when one has a chronic illness.  But, we have learned to adapt and cope creatively with that as best we can.  It is just the day to day intimacy of how lovely it would be to wake up with him that I don't have.  The fact that I cannot lie in his arms comfortably, naked, for more than like 15 seconds, is a loss.  I would not even hear him if he had such a nightmare and called out in the night.  I have to have this white noise machine 2 feet from my head on loud to block out any and all extraneous sounds or a simple car passing would wake me.  And so, I am aware again, from another angle, how our relationship is affected by this illness.  In the spirit of trying to give thanks in all things, I am thankful that the roles are not reversed because he so loves how the cat curls up to sleep with him, while I cannot have it.  I am thankful he gets that affection and that he deeply understands that my hypersensitivity is not my choice.  It is my wiring.  I have no more control over it than I do which hormones will be released when.  I can endure discomfort for a short while, as I proved this morning but, after doing so, I am wide awake, and my very precious sleep is cut short by a few hours.  This will prove to be problematic later today.  I have a doctors appointment this morning which means waiting for and riding the bus to and from.  Also, being in crowded noisy waiting rooms, and lots of fluorescent lighting.  And finally, when I get home, it will be lunchtime and immediately nap time.  By the time I wake, he will be home from work.  Hopefully, and this is really hoping, my nap will be restorative enough that I can enjoy at least a few hours awake with him before I have to turn in for the night.  Just love and twitches.  Such is life.  Reminds me to pray the Serenity prayer.

Have happy days!

So glad for wheels

Well, the good news is abundant.  I was able to take a short walk with Oscar on 8/12 and again today.  Got home not feeling completely spent.  Did the kitchen chores I like to have done for the day.  Got my bath in.  Feel quite dizzy now, and thankfully, there is a chair here with wheels in which to convey my pretty self around so I do not fall.  I am unusually dizzy.  Not alarmed yet but, just aware.  Will eat something smallish and then go back to bed for my nap.  And, Vlad seems to be happy, as well.

Have happy days!

It's later, after the nap.  Vlad is awake and unsatisfied with his lot in life.  I feel different today.  Something is off.  I am just as dizzy now as I was before nap time.  Super grateful for my wheelchair and the knowledge that I probably won't get hurt.  Something is different.

Vlad my pet migraine

Many folks have never had a migraine headache.  Some folks have only had a couple in their lives.  For me, I have a pet migraine which I would like to fully describe and introduce y'all to.  His name is Vlad.  I once saw a show on the history channel about Vlad the Impaler in some Slavic nation who used to put the heads of his own people on spikes around his castle.  That feels like about the right amount of evil I wish his name connotation to have.

So, Vlad chose me.  I did not pick him. With my dog, I went to the place where the dogs were and then my specific dog did come and sit on my foot and claim me as his.  And the cat, we chose her specifically.  Vlad wandered into my life one day with a ball and chain and I could simply not outrun him.  This description of him will sound fantastical but, I assure you it is as real a description as I can write about the facts and how they unfold.  In my imagination, if I had to draw Vlad, he'd be like a Gila monster.  Now some think those are cool or cute but, Vlad is mutated.  He is a color that makes you gag.  Whatever that color is for you.  For me, its a yellowish brownish greenish hue.  His skin looks like a cross between a decomposing fish and a cat with mange.  It is a disturbing sight.  And he varies in size, unlike any other organism I've ever seen.  There are times when he's probably only 10 pounds, other times when he's easily 200 lbs.  And times when he's weightless.

Here is a description of our day.  He is clamped to me permanently.  We both know this.  It is my job to keep him satisfied.  When Vlad is happy, everyone is happy.  He lives in an invisible backpack I wear at all times and he is weightless when he is happy.  As he feels dissatisfaction, he grows weight and bulk.  Sometimes this happens slowly, but, I have known it to happen in under 2 minutes as well.

Many varied things could upset his zen.  Too much light, too much noise, too much hunger or thirst, too much of some food additive, too many hours of being awake, weird strong smells,  some random color blue, whatever.  Some of it is predictable, some is just not.  I have studied the species Vlad belongs to and I try very hard to please him.  I really do.  I wear sunglasses inside my home about half my waking hours.  I keep the temperature at 70 degrees and pay the electricity to do that.  He will not tolerate even 72 without letting me know his displeasure.  I do not emerge from the doors of my home without a large brim hat on my head.  No matter the season.  This sometimes makes me look like a freak, I know, or a homeless woman, but, really at the cost of keeping Vlad happy, I will pay a very hefty fine.

So, here is how it unfolds when Vlad becomes dissatisfied.  Let's say, I am 30 minutes past due for something new in my belly.  Vlad becomes visible and he's maybe the size of  a beagle. (Rarely ever does he reveal himself in smaller more manageable forms, like say, lizard-sized.  It has happened but it is the exception, not the rule.  Vlad is a diva, all about drama.) Big enough for me to do something about IMMEDIATELY.  This action involves several things.  First, I reach for my migraine medicine.  I take Frova which is a triptan and is what is called an acute medicine, meant to stop Vlad from growing further.  (I also take other preventative medicine daily to keep Vlad satisfied.  He's a propanolol junkie.  My blood apparently is more appealing when its thinner.)  I take one 2.5 mg Frova with 2 Aleve, and I have these 3 pills on my person at all times, unless I have had to leave my house in such a terrible brain fog that I have not replaced my supply.  This is a disaster.  Vlad wins.  More about that later.

So I've taken the pills, Vlad has gotten from a beagle sized Gila monster to a pony sized Gila monster in a matter of about 20 minutes  OR, the medicine has indeed aborted the migraine and Vlad is chased back into his invisible backpack.  Even if the latter happens, I still wear my sunglasses for a while just to make sure Vlad is OK if he sticks his head back out.  Let's talk about when the acute medicine fails.  This happens more often than it used to for me, and also, I am very aware of what's called rebound headaches.  If you take the acute medicine so often, you begin to have a headache only because you haven't taken it that day.  I have gotten into this cycle before and the only way out is to suffer some days of Vladzilla.  Not something I am ever wanting to face again.  So, I am careful about my medicine and try to not take it more than 3 days in a row.  Also, the insurance company only gives me 9 pills for my month supply.  That is an awful high expectation that I can keep Vlad satisfied, if you ask me.  But I digress.

It's about 40 minutes after I took the meds and the pony sized Vlad is now cow-sized.  He requires darkness, stillness, and quiet.  When I say requires, I mean that.  This is not what Vlad prefers, he is now big enough that he is holding my entire body hostage unless he gets these three needs met.  If ignored, he will make me vomit any food or water or medicine I've taken, and I have come close to passing out from not providing them.  Strength of every kind leaves me.  Knees buckle.  Speech goes.  The whole she-bang hits the fan.

So, now, I am providing Vlad his needs.  I am alone in my dark bedroom lying still with the ball of my hand pressing my third eye.  This seems to be an iota of relief.  Not sure why but, it is.  I sometimes lie with cold towels or wet cloths over my face or around my neck.  Mostly I just pray for passing out so I am not any longer awake for the suffering.  Vlad is now the size of that really big bear they have stuffed at the Cabela's store.  Maybe 15 feet tall or more.  But, don't imagine him as beautiful like the bear, he's still the Gila monster mutation with mange and dead scales.  It is a sight to behold, let me tell you.  And, now he is snacking on my skull and my brain.  Yes.  He Is.  Eating it and not in bear sized bites.  In dainty little tea-time sized bites.  Eating my brain.  While I am alive.  I pray to the Virgin Mary to just sleep.  Please let me sleep.  Most times, I wake up and Vlad has gone back to his backpack and life is again wonderful.  Sometimes, Vlad is still with me, but beagle sized again.  Or maybe even mouse-sized, but, he's out of his sanctuary which means my battle is already begun.  Since it's not a good idea to take more acute meds at this point, there's nothing for it but stay in darkness, coolness, stillness, quiet to keep him from growing.  He's already unhappy.  He's gonna grow.  This is not conjecture.  This is historical data.  The headache always progresses without  medication in my body.  But, I do still need to come out of my bedroom cave now and then to do stuff like feed myself and my animals when I'm alone here.  The dog still has got to go out.  So, life is not easy.  Not at all.

Now imagine this.  Vlad has been bear-sized for 2 days, no relief.  This makes him grow exponentially.  After 5 days Vlad becomes Vladzilla, and that is not a joke.  I am so overwhelmed by the sheer pain I am constantly in that I think I lapse into incoherence sometimes.  I can only bring myself to whisper, not even speak aloud.  I do not want to eat.  This has happened to me.  This is not fiction.

If you've ever talked with me about my pain, I will have told you that I'd take physical body pain any and every day over the migraines.  Now that you have met Vlad and know his true nature, and that he is tethered to me with a ball and chain thingy, you see, pain in my arms, hands, legs, back, it's all not so bad.  Yes, it is disabling.  No, I cannot drive.  No, I cannot work.  But, I do not want to die.  When Vladzilla is on me, eating my frontal lobe, I do.  I truly do want to die.  I would never do anything to cause that to happen because it is not for me to make that decision but, I have wanted it.  More than once.  And, I think I probably will want it again.  It is a natural human response to torture.  That is what migraine is.  Vlad the Torturer.  And I am only a human.

There is a shot to be had at emergency rooms which sometimes is effective in disrupting these marathon migraines but, even they do not always work and sometimes have powerful side-effects.  If your brain was being snacked on by a bear sized mutated Gila monster, now imagine vomiting until you dry heave.  That is worse than just being snacked on.  Yes?  Yes. Trust me, it is.

Dear Lord,  we pray for all the little Vlad's in creation that they make themselves known while they are manageable and do not drive people to madness.  We pray especially for those we love never to suffer this kind of head pain.  We pray for you to intervene when folks are thinking of permanently solving a temporary problem.  In you gentle hands, Amen.

Have happy happy days!

Frustrating nights

I hate that its 12:30am and I am awake and have bee since about 11pm.  At 7 pm my eyes hurt so bad I couldn't keep them open any longer so I took my meds and went to bed.  Got several good hours of sleep but, can't seem to get back.  And, for my particular set of super-powers, that is not good.  Very very not good. 

In the middle of reading 4 books right now and also doing 2 different crochet projects.  You'd think I wouldn't mind quiet idle time.  Books I'm reading on my own are A Serpent's Tooth by Craig Johnson (Walt Longmire series), and A Big Little Life by Dean Koontz.  I am listening to Odd Thomas by Dean Koontz.  Tim and I are reading together Pines by Blake Crouch.  I have a BUNCH more at bat so I read a bit every day and really enjoy it but, I want to be asleep and I'm frustrated.

My life involves MORE than its fair share of managing frustration.  I am better at it than I used to be.  But it sneaks up on you out of nowhere.  I know that is true of everyone, of every life.  That's why people lash out at each other, road rage, meltdowns, etc.  I, however, have an extremely particular set of super-powers, and once they, or even one of them is triggered, the whole world can change.  My view of it, my identity in it.  It's danger to me, it's fault for my condition.  And, most importantly, my brain's ability to process and communicate information.  Real cognitive delay.  Real physical debilitation.  Then I have to manage all these darn feelings that follow, like resentment, jealousy, fear, rage.  And frankly, you'd think after managing all that, I'd be tired enough to sleep through a night.  But alas, it is not to be this night.

Think I will read what Walt Longmire and Henry Standing Bear are up to now.  It is fun to read dialogue by Henry Standing Bear because he does not use contractions in his sentences.  :)

Happy nights!

We are Soul Vessels

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http://www.myfoxdfw.com/story/26188527/parents-use-professional-photographer


I saw these photos a few days ago and they have really stayed with me.  I am not a mother.  But, the strength of the love they felt for that child is something which brings me to tears.  The body was the vessel of her soul so, I think it is the loveliest thing possible to capture the image of that soul vessel.  Some will not agree and will turn away in distaste.  I say, how can you not see the love, the celebration that her soul was with them for all those months, even if in the womb?  Would that we all could feel the depth of blessing of children and celebrate all souls, even the ones in vessels which are old or infirm, disabled or injured.

So, my small epiphany from Monroe is this:  I am a living soul grateful for every single second.  The seconds which are joyful, full of laughter.  Those full of awe at my beautiful world.  Those which are so overwhelmingly painful I wish to sleep and not awaken.  Those which I do not know how I will go on in the face of the difficulty.  All of them.  This vessel is less beautiful than the one captured in those pictures, in my opinion but, it is the one I'm given and I will HONOR it.  It is His gift to me, along with so many other blessings.  It houses my soul and that, is the precious part of me.  Not my legs, not my nerve endings, not my sometimes functioning brain.  My soul.

I had no idea I was going to have a weepy day.  But, there it is.

Eating with Awe

For now, begin to look at your body and your soul with wonder. With every morsel you eat, do not presume to understand the mystery that you are. Instead be in awe of each moment of life that courses through your veins, of each breath you inhale and exhale.

-from Table of Plenty

Dear Lord, let me be aware of the beauty that is the creation of my body.  Let me be accepting of what I perceive to be imperfections or inconveniences.  Let me know that my view of myself is not your view of me, the only view that matters.  Others' views ceased mattering long, long ago.  Help me to be peaceful in this skin vessel you've provided for my soul.  Help me to understand that the incredible engineering involved in keeping it operational is beyond me, and beyond man in general, or there would be no illness.  Help me to surrender the youthful beauty it once held with grace and accept the new beauty that is ageing.  With every morsel I feed myself, let me feel your love for me.  Amen

On a similar "body maintenance" topic, I need a nap DESPERATELY.  Let's see if I can succeed.

Have happy happy days!!