Salt

I love it when there is a simple answer to a ginormous problem.  It feels miraculous.  Maybe as close to a miracle as I will experience in my life.  (Although I will admit that during my 14 month remission of symptoms, I felt overjoyed most of the time.)  Before I began taking one of the drugs prescribed to me in 2005 to see if it would help, I think I had maybe 4 migraines in my life.  I remember one very clearly.  It came on because of hunger.  I wasn't seeing a neurologist then and was otherwise healthy, so because it wasn't a ginormous problem, I didn't feel any real suffering from it.  Well, after the drug Neurontin, gabapentin is the generic equivalent, it is the second most debilitating of all my symptoms.  I was only on it for a one month trial.  During that one month, I had a migraine almost every day.  It was September and of the 30 days, at least 24 of them were spent in splitting pain so unbearable as to put me in bed, all day, each time.  I called the doctor twice during the month saying, this side effect is too much, and like all the other months, he asked me to please stay with it for at least one month.  He said that my body might still adjust, adapt to the medicine.  Hang in there, he said.  He was one of the more compassionate doctors I had.  He was working with me in trying to find a medicine, an anti-seizure medicine, that would calm my nerves down.  So, we tried several.  I would titrate up, stay on it for a month if I could, and then titrate back off.  I think I did that for eight months or so.  This was one of those experiments.  And it changed my life.  I think it changed the face of the condition I live in, as well.  Now, this is just me speaking but, I think it has rewired the trigger for migraines to be so low and easily sprung, that I get them so often and so severely that they are one of the worst culprits of my fibro.  It's interesting because I know others who have fibro and don't suffer migraines.  Also, I know some folks who swear by their Neurontin.  It's crazy how we are each a feat of miraculous, supreme, exquisite human engineering.  So, it has been one constant battle to stay on top of my headaches.  In fact, I find them more debilitating than the physical pain.  I am on two preventative medicines, and have one rescue med that works most of the time.  But, some don't get caught and I still am left with an axe in my head and, well, etc.....

I stumbled upon something online which has already helped 3 times in 2 days.  Salt.  Specifically, pink Himalayan sea salt.  That kind of sea salt has a very high concentration of some certain minerals not found anywhere else and, they cure a migraine headache.  To think that something as simple as a teaspoon of salt in water with lemon can be my medicine, it is a miraculous feat.  It makes full sense to me, because every time I feel one coming on, I crave salty Tostitos.  I must need it.  My lil' inside Marie knows it. A remedy exists that is not put out by a pharmeceutical laboratory, does not have any side effects, is not expensive, feels wholesome, on which I can now count.  So, I will continue to take my prevention meds.  But, when I feel one coming, I will get to my salt and water as fast as I can.  And now, I have a backup med if the salt doesn't work.  I have a plan A AND a plan B.  How sweet is that?  Super delicious yummo sweetness.

I have true gratitude that the internet and all its many "do this, it will cure you" sites guided me to one that WORKS.  Gratitude for a plan B.

True escape for three hours

Maybe I shouldn't call it escape.  Maybe it was more like a vacation.  My life is not a prison to return to, but an interesting and challenging combo of environments and blessings which can, without a break, feel overwhelming at times.  I went to my first ever knitting circle this morning.  These ladies meet once a month about half an hour away from me.  Here is one of the most lovely things about the group.  None of them knew me.  No one asked how I'd been feeling.  No one said, oh it must be the weather.  I used my cane and took things slow when I did need to walk but, there was no questioning whatsoever (it would have been rude, really) about my health.  I got to pretend to be a regular gal.  For 3 whole hours.  There were 13 of us at the end of the time and we all just chatted about books, movies, what projects we're working on, the traffic somewhere, home schooling, food, husbands, etc.  Normal things.  It was not a support group.  It was a group of friends.  They were happy to have me there.  It is the usual thing to leave the morning with more yarn than you arrived with.  Somehow, donations of yarn are made to the lady who runs the group and passed along to whomever, and I brought a huge bag of yarn home with me.  Ladies were throwing finished 9x9 squares across the table to each other for specific blankets.  Holding up the little pink sweaters for admiration.  Taking note of which author one of them said was fabulous and which TV show to look for on Netflix.  Also, I think I was the only one who didn't bring food to share.  There was a plethora of desserts, salads, coffees, fruits to be had.  The word fibromyalgia did not come up.  No one talked about any of their own problems.  Just shared the experience of enjoying the company of those who love to do what they do.

I don't know if I can accurately articulate just how badly I needed a vacation like this one today.  I needed to be around some people who don't know me.  Who take me in for just a bit socially, and who didn't delve deep enough that any bit of the conversation had to do with me or my health.  They asked me to return just based on what small parts of me I showed them.  I got to feel like a regular woman.  I have forgotten what that feels like.  Now that I'm home, I don't feel that way anymore as I cannot even walk from the car through the garage to the door without help.  Not regular help from my cane, either.  I had my cane and it was not anywhere near enough.  Tim had to bear most of my weight to get me inside to the wheelchair.  The small miracle of those 3 hours of normalcy is not lost on me.  I hold huge gratitude for it.

Grateful for the courage it took to reach out and put myself in such an unknown situation alone.  Grateful that it was worth the risk.  Grateful to Tim who taxis me around without complaint.  Grateful that I have something on my calendar to look forward to.  Grateful there is something on my calendar at all, besides doctors appointments.

A Beautiful Day For A Dog Walk

I went for a walk today.  With the dog.  Just me and the dog.  I understand that doesn't sound like much of an accomplishment but, it is one to me.  I'm proud.  I think it has been a year since I've done that.  I've experienced changes in my limitations that I've adapted to and but being alone anywhere in the world with said limitations is cause for acute awareness.  It is a beautiful day.  Maybe in the 50s or high 60s.  Clear blue sky.  Gorgeous.  A bit of breeze.  I miss being out in the sunshine.  I have missed walking Oscar but, he can still be tuggy and the instability was not a combo I was willing to take on.  So, this morning I became fed up with the overload of dog energy in the backyard in the form of barking that I just threw up my hands and said, ok, we're going.  I used his martingale collar which helps him with tugging but, I also put his backpack on him which we haven't used since he was 1, back in 2012.  I hoped, and it happened this way, that the unusual feeling of the backpack would be more puzzling to him than the confidence he'd have to pull away to smell things.  I started out from the house with 1 lb. in each side of the pack.  He really wouldn't abide that.  We got just a few houses away and I realized I would do more coaxing than walking so, we went back and I took the cans of beans out, leaving the backpack empty.  Upon this action, he was willing to walk.  Also, we walked in the street, which I usually don't do either.  If we are on the sidewalk, he tugs to smell things.  I know the pulling is a result of poor training but, that's where I'm at.

So, in gratitude for the courage to push my body and trust myself and my preparation, and for the peaceful quiet now that O is asleep, feeling fatigued but better than upon waking.

Have happy days!

Maybe inside the bell curve

Since my world these days is much quieter than it used to be, I have more space in my brain for thinking.  I have had the desire to write for several days, but not taken the effort to sit down and let myself actually do it.  Then, I began to wonder why I want to write.  Who is reading this stuff?  What does anybody care if I had to start taking magnesium again.  And it came to me while I was pureeing butternut squash for a pie that it is a craft.  A form of expression, like music and dance.  I have that creative, lets call it a gene, but  I don't know if that's anywhere near correct or not.  I have had the desire to express whatever is in me for as long as I can produce memories.  I have rocks which I colored with crayons when I was probably 5 or 6.  I have a ribbon I won at a local art show as a child.  Music was always all around me.  Always.  I can't remember ever going to the church we attended as a child and not singing in the choir with my parents and my brother.  I just do stuff, expressive stuff.  I guess the question now is what am I trying to express.  Well, isn't that the question of every life on this globe?  Today alone, there are probably 4 or 5 people in the homes of recently deceased loved ones who were also creative and expressive.  My money is on the fact that there are notebooks upon notebooks of writing.  Canvases stacked and paintbrushes all over.  Or guitars.  How many guitars does one person need, really?  If they were recorded for posterity's sake, we get to enjoy their gene too.  People with the gene do stuff because they are called to do it.  I am one of them.  I have no idea if anybody reads my words save one beloved aunt, one sibling, and one good friend.  Maybe they are the only 3 and maybe they even only do it occasionally.  But, in fact, I just write for me now.  It is the way I express that gene.  It is my outlet.  I don't really know how the quality of my "prose" measures against any real writer but, I do know this.  It flows naturally out of me as if it were carbon dioxide.    And it helps me to clear out something in my head akin to cobwebs, which is always feels nice.  Exactly like getting into a bed with clean sheets.

I sent some of my writing to an uncle who is not virtually connected to the world, hoping it would not be too depressing for him.  That last bit was specifically instructed by my mother.  I didn't sift through to find any depressing parts to omit.  It is what it is.  If some of it strikes him as sad, that's OK.  Let him express that feeling.  Why are we trying to protect other people from feeling stuff that's hard?  That's the only time we grow, when we burst through something that was difficult to get through.  Otherwise, we're surfing along in our life journey, and it's only in the stumbling that we get our scabby knees and scars of wisdom.

My plan to omit extraneous chemicals in the form of all those vitamins and supplements has worked.  Also, I have very minimal exposure time to audio during my day.  I am not feeling so foggy as I had been and during the last month I didn't have any back sliding into it.  I let myself listen to some audio book while I'm washing dishes only or while I'm falling asleep.  No other times.  I have not turned the morning news on for 3 weeks or more.  When I sit down to watch something recorded on TV, I watch it and do nothing else.  Then, I turn it off.  I really only spend my mornings alone.  Tim goes into work each day before 5am, I get up about 8 am.  I do household things as much as I can in that time, bathe, cook, at 11:30 or 12, I've got to eat again.  After lunch, I go nap.  Skipping naps is a mistake I have made more than once and I am determined to finally learn the lesson. Nap from 12-3pm  So, he comes home from his workday while I am napping and I wake up to him here, ready and waiting to share his day with me.  So, my afternoons and evenings, I am not alone.  Which is lovely.  But, the affect of omitting others voices from my home, no TV on in the background or music, does leave me feeling a bit lonelier in my mornings.  Maybe I'm still getting used to it.

No one could write a list of blessings longer than mine.  Truly, I believe that.  And, this journey and my scabby knees have shaped me into who I am, and she rocks, by the way.  I function, in the few hours that I am awake and out of my bed, a little bit within the normal section of the bell curve currently.  Now, if I were to decrease the sleep to what is within the bell curve for others, the house of cards would surely fall.  But, just having days like today, where there was nothing that I felt I suffered from, it feels like there may just be some magic around us.

Have happy days!

~M  

PS:  You know who you are; I used poor judgement in my actions last week and I will not make the mistake again.  I love you and the others.

Decisions, decisions

January 11, 2015

Some of you who know me well, will agree that I am quite decisive.  I rarely debate something in my head or with another person once I already have a plan of action I want to take.  Now, if I am without any plan, I will seek advice.  But, this decisiveness and call to immediate action has been with me for as long as I know.  Also, I rarely second guess myself.  If things went wrong, well, they went wrong and if I'm to blame then I apologize and try to correct what I can correct and move back into the present moment.

Recently, the decisiveness went wrong.  On Monday, I had such a completely clueless day that it frightened me.  I became convinced that I did not want to live in such a fog because I might indeed accidentally hurt myself, or burn my house down, or whatever.  In an effort at action in the face of "battle" I decided abruptly to stop taking everything I take which is not prescribed to me by my doctors.  That amounts to an entire hand full of vitamins and supplements.  I took only my meds.  Well, the fog has cleared in my head.  Although, I have no way to know if that is related to the fact.....

had to stop and am picking up later....

if it is related to the extra chemicals in the supplements being gone or if the extraneous stimulating sounds  are the key but, probably it is come combo of the two.  I am having many more clear headed days now than I had when I first began this entry.

Grateful for courage to decide.  And the ability to take it on the chin when the decision goes badly.

After the nap but, still deep in the fog

This entry will be an example of how deep in fog I am today.  I think I may be able to disgise it since I'm going to type slow.  Also, leaving spelling problems in.  I'm from the age when you spelled it right the first time and didn't rely on spell check.  Anyway, for some reason, my fibro fog is justy super thick today.  I mean, I could scoop it out like meringue in front of me.  Visibility is nothing, or maybe like 1 foot.  Tim just said to me "what did you do today/"  I replied "I fed them, and I did a couple loads of laundry and I did the dishes.  And I fed myself.  I nd I spent an awful lot of time wondering what to do.  It is so nice that he gets what that means.

Something I sort of discovered is thatI do have muscle memory in my arms, hands, and my hamstrings.  Here is how I know.  If I sit in my wheelchair and wheel myself to the other room I'm able to retain the thought of why I'm going there and what to do about it.  The action  of my arms and hands having something mechanical to do and the lack of risk on the part of my legs, I don't know why, but, I have noticed the effect 3 separate times.  If I walk into a room, its like I've nefer been there, but if I wheel in, that is so much easier on my mind that not only can I remember the reason, I also can get some steps done toward accomplishing the thing itself, if not the whole thing.  Its the memories in my muscles.  It has to be.  My mind is just addled.  Really.  So, I used to used my chair about 1/4 of the time, now I use it 3/4 of the time.  I can't think at all when I'm onmy feet.  Also, had another 2 events or incidenceds, whichever you like to call it where I fall/faint/go down today.  And the 4 that happened yesterday, T was home.  Two of them he was right beside me.  Today, I just paid attention to the precursor, which is a tinghling in my knees, and then thats it, legs no longer support weight and vision is grey on the way to black.

Very frustrating.
Closing with gratitude, I did get to napo for an hour and a half before O woke me.  I have a warm safe, place to nap, and provision for me to be so comfortable as I lnavigate my dense fog.  Also, gratitude that I don't try anything stupid like fire, or swimming, or lifting things, you know.  All the things that would put me into actual trouble.  My angels up there at least keeping me on the main highway.
Have happy days my friends.  I hope this non-corrected copy doesn't offend any.  It is how I think even now after my brain is at its freshest today.  Porridge> Oatmeal>

Two thoughts: A metaphor and a precaution

I have thought of two things I wanted to share here with you but, right now I can only remember one, and that is because in the middle of the night, I could jot it down with my snazzy stylus on my smart phone.  How fun is that?  Really.  Oh, and I just got the other one back.  First music.  Then canes.

Probably lots of people before me have made this metaphor about pain and music or pain and sound, in general.  If you are in the presence of someone in pain, it is extremely hard to understand what they are feeling.  They cannot adequately communicate it.  They just can't.  Even if they had the incredible vocabulary to put it into words, the pain itself slams shut the file cabinet in the brain marked words and all they are left with is generalizations like aching, stabbing, burning.  I say this.  Think of pain as a symphony of instruments, hoping to not have one playing at the same time as another.  I have a low sort of thrumming pain in my arms right now which I imagine is what a very low note on a clarinet or flute sounds like.  Sort of melancholy.  My fingers, however, sound like a piccolo at its highest register.  In fact, I'm sure I would hurt less if they were gone.  And music is so fluid, like the nervous system is.  I could be at a medium level 5-6 pain which is burning but, if I say, imagine a saxophone blues number on high speed.  That gives a different metaphor.  Here are the sounds you don't want to hear.  Trumpets.  If the trumpets are blowing, I am generally unable to even spell my name.  I have been known to not understand what the word "left" meant.  Those damn trumpets.  And sometimes, trumpets play along with other instruments, just suddenly, for a measure or two, to keep me on my toes, there will be say 20 seconds of trumpets while I am just coping with my saxophone stuff.  The sciatic area would be trombones or tubas.  I think head pain is the absolute worst.  Of all the pain I have endured, migraine is the most debilitating.  Frankly, the only thing it could be is the snare drum with cymbals.  And being played rock style.  Like the drums are the highlight and everything else has gone quiet so every single sound wave of every hit travels into my brain blinding me with its sound. A deep depression is the sound of a wailing unending cello.  A heartbreaking sound.

The fibromyalgia pain syndrome feels very much like a song, really.  A never-ending song.  Yes, there are rests when things are silent, but, there are times when most of the instruments are playing their parts and doing so very well.  At those times, I can not get up and leave the symphony hall.  It is IN me.  I have no escape from it except that which I create through mindfulness, laughter, and faith.  Yes, with clarinets I can fall asleep.  Also with flutes.  But if a trumpet is playing, how, answer me that, how could I fall asleep?    Then in the morning, I have just a few notes off the xylophone or something or a very light brush of a cymbal.  Anyway, I am sure I'm not the first to denote this metaphor but, in case any of you wonder how we describe pain so differently, it is because it IS so different.  The Canon in D Minor, my favorite work ever, does not sound or feel like John Denver's Annie's Song and that does not feel or sound like something by Ozzy Osborne.

So, my second thing is that I have an issue I don't understand which is different about me from some others in my similar situation.  I gladly and willingly walk with a cane.  I almost always use a quad cane now instead of just the single.  I bought one the day I woke up with these symptoms and it has been part of my life since.  (Yes, there was once a remission at which time it was unnecessary.)  Also, I own 2 wheelchairs.  One lives in my house, one lives in our car.  Now I don't think of myself as having a fear of falling because I believe that these measures are the practical and prudent actions I can take to protect myself.  So, I move about at my pace, carefully and anybody who is bothered by my slowness should say a prayer of thanksgiving that they can walk without any pain.  But, many friends I have, do not use a cane.  I don't understand this.  I'm unsure if the condition is indeed affecting me in a more severe way than in others I know.  One thing medical science does know for sure about fibro is that no two of us are alike.  I am disabled by it and have been since its sudden onset on 3/15/05.Its possible that it may be vanity or stubbornness on their part.  Also, I have done much volunteer work in nursing homes and I know the truth is that generally, if people who cannot be very active fall and break a large bone or joint, they do get sent to a rehab/nursing home, if they can't be cared for in their own house.  Sometimes that is the first step in a long line of steps that keeps them in that nursing home for the remainder of their days.  They can be bleak places.  I want to remain as independent as I can possibly be for as long as I can be.  And sometimes it breaks my heart that I am dependent.  It is just grievous to need somebody else to do a small household activity for me.  But, also, it is what it is.  So, someday, I may need to face that kind of situation.  I want to have any stubbornness or vanity well behind me and get on with the business of living each day happily.  Further, why would I risk twisting an ankle or tearing a knee ligament and letting the trumpets play more and louder.  Foolishness, I say.

Grateful today for blogging right before lunch which includes:  This house, which is warm with gas, and comfortable with furniture.  It's feeling of safety from the alarm and the dog.  Clarity of my mind since, right now, only the piccolo in my fingers has a part.  The food I'm about to go choose for my lunch today and what I will take out for dinner tonight.  The bathtub I can fill with hot water and the soaps and shampoos of my choosing for use on my skin.  Every single bit of it.  Pure gratitude.  And for my faith which never wavers.  And my friends and family who buoy me in every storm.