Independence and Connotation

So, since I am unable to do much of what has lately filled my time, I find myself thinking, and consequently, I guess I will put my thoughts down here.  For better or worse. 

In the bathtub just now, I was reflecting on independence.  A word that is commonly used with it is fierce.  But after having it and losing it repeatedly, I see that the word fierce is just place-holding for the word pride.  People! are proud of themselves when they accomplish stuff.  "Look Mom, see how high I can swing!"  Its ingrained in us from super young that its a good, advantageous, and desirable to be able to do things ourselves, and to need help is a weakness.  And to ask for help, that's more than just a little lame.  No one wants to ask for help.  Not at any age.  Kids fail in school because they didn't ask for help and no one noticed that help was needed.  Folks fail at jobs because help was needed but fear of weakness was greater.  Marriages fail because therapy is seen to be asking for help.  Elderly folks fall because they won't use a cane when they get unstable.  That's what we've gotta get around.  I need a lot of help again in life.  For a long time, I didn't, but now I do again.  I can't drive myself anywhere.  I can't take a load of laundry out of the wash.   I can't pick up a full gallon of milk.  I mean, I could do all those things, if I didn't care about myself or my safety, or the safety of others.  Physically, its possible for me to drive.  I can sit there and turn the car on, and get going down the street.  But, I am physically unable to grip the steering wheel properly, which, I think we can all agree is a ginormous problem in itself.  And I'm unable to move my foot rapidly enough, or have strength enough in my leg to use the brake at the necessary time.   Also, I can take a load of laundry out of the washer physically.  It might sublux my shoulder, elbow, or any part of my wrist  and hand to do it.  And even if I manage not to injure a joint, it is incredibly painful to go through those motions.  I physically require rest after doing the task.  The same with milk.  I can lift it, but the agony I force myself to endure in doing so, instead of asking for help, feels like disrespect to myself and my situation and my needs.  So, I'm not defiant in the face of my dependence.  It is what is, right now.  And I have HUGE respect for myself and all I have survived and endured to live to see this very day.  So, I will ask for help whenever, wherever, and often.  Because the fierce was let go years ago.  Because the pride has forever fallen away.  And very importantly, because people in the world want to help.  By giving them the opportunity, I give them a chance to do a good thing.  And 2 other folks might see that good thing.  And those 2 folks might post on social media about the good thing.  And then, by asking for help, I have made a positive ripple.  Which empowers me.  Needing help doesn't equate weakness.  It is strength that asks for assistance.  It is wisdom which recognizes limits and seeks aide.  I'm empowered by my dependence.  It would be lovely to not have had to ask Tim to bring my wheelchair from my bedroom to the kitchen where I was on the floor, but I needed it.  And he did it.  And however he felt about doing it for me, I know he was glad to help me up off the floor.  And I hold no shame with it.  I think fierceness needs to apply to protection of our self-respect, rather than our independence. 

My .02 today.
May you all feel as blessed as you actually are. 
Marie

Dramatic Morning

And just like that, everything changes dramatically.  Again.  All it took was organ music.  Hours later, I still cannot walk.  Searing pain, all over.  Fuzzy thinking.  Freezing cold, everywhere.  It’s been so long, the best part of a year and a half, since pain like this has been with me.  I was trying to untangle it on the way home from church and explain the sensation to Tim.  I compared it to a bell being rung, and more importantly to the subsequent sensation of ringing that lingers.  That’s what I feel in my bones.  It feels like my skeleton, all of it, is ringing, or buzzing, or something like that.  He said the organ must have hit “Marie’s resonance frequency”. Lol.  

It makes some sense in my head because, my connective tissues are looser than they should be, therefore, my skeleton is not held together tightly.  But instead, I am loosely constructed.  So, I vibrate more.  And the more I vibrate, the more my nervous system is stimulated, and the more subsequent pain.  Which is why I have brought my cane out and why I will be using my wheelchair for the unforeseeable future.  My sweet T brought my laptop to my bedroom for me, so I could capture these thoughts.  I can’t even walk while holding it.  Which means no driving.  Which means no volunteering with babies.  Which means no handling unknown dogs at the shelter.  Which means setting no cat traps.  So, today, I’ve lost a lot. 

But, it’s all just a chapter.  I don’t know how long this one will be.  But, another change will come again.  So, all is not lost.  Just some.  And not forever.  Just for a while.  I might regain function tomorrow.  Or not until June.  Or not until 2022.  But it is possible.  Because with God, all things are possible.  And if I am anything in this life, I am with God. 

I have been, and continue to be, so very, very blessed.

Life Can Be More Than Descendants

I have had this on my mind for a little bit now.    It is because I am so well, physically, mentally, socially, etc that I want to address this now.  Mostly, I hope that by writing it, I can make more sense of it and get it off my chest, where it now lies.

My own life is not lessened by the fact that I never had children.  My funeral will be less crowded, surely, but that does not mean I am less loved or that the impact I had was less meaningful or important.  I don't get to have anybody I raised return to me during the year, at holidays, or call me on my birthday, celebrating me.  I don't have grand-mothering to look forward to.   And I am ok with it because I have to be.  It is what is.  So, I accept it. 

The only social media I'm on anymore is FaceBook, and I've left most of the support groups I used to spend time and energy within.  So, my information is coming from other healthy folks, folks who don't live with illness every day.  And, what I interpret is that being a parent generally validates a life, and without that experience, many have no idea how they would carry on.  This is so insulting to me.

It is lovely that any one of our lives reach so far and wide that churches fill for funerals, but, that doesn't mean her life is better in the eyes of Our Lord than mine is.  I will fill a few rows, maybe.  That's just how my life has unfolded.  My journey.  Circumstances prevented me from touching the lives of others as I might have for over half of my life.    And now, at age 50, I just want to say, I count.  Even though I'm not a mother.  My life counts.  Even though my progeny will not fill any pews in any churches at the time of my death.

Maybe "the most important thing you ever did" shouldn't be raising a child.  Maybe it should be focusing on one's own emotional and mental health enough so a maladapted and emotionally stunted child doesn't get raised.

I'm blessed this year in ways I couldn't have dared to hope for.  I feel well.  I've discovered adaptations and management techniques that have kept me feeling this way for most of the last year, which is a record since 2005.  Holidays can be a difficult time when everyone who we're related to and love isn't present to celebrate with us.   I think we all feel the sting of love turned to grief especially at this time of year.    But, if you know folks like me in your world, maybe speak a bit less about how your life would be meaningless without your child.    Because my life is without one.  And I am equally meaningful in the only eyes that matter.  His eyes. 

May you all be blessed,
Marie

And she ran....

Well not really running, running.  Not like trying to save myself from a bear.  Just three mini-steps above speed walking, but, still firmly in the jogging category.   

It happened this morning, completely spontaneously.  I didn't work towards it.  It wasn't a goal.  I just listened to my body speak, and it said "let's run, let's play".  So I did.  I had both dogs and I broke into my run so often and for so long that my little dog got worn out.  She's got short Corgi legs.    And it was thrilling.     Ab.So.Lutely. Thrilling.

Three years ago in November,  I'd frequently walk my dogs from my wheelchair, clipping their leashes to the chair.  We'd pretend they were sled dogs, lol.  I'd sing Jingle Bells at the top of my lungs and make up dog-related lyrics.  Two years ago in November, I couldn't even leave my bedroom because of the multi-month migraine that struck.   Last year, I walked a half-marathon.  This year, I ran.  And, it's not over.  There's still 11 days left for all the fabulousness. 

It's been a lovely fall.  I am back to volunteering weekly at Children's Health as a pal for any patient who is alone.  Last Thursday was all babies.   I have begun volunteering on behalf of animals now, as well.  Twice a week I dedicate time to their cause.  Monday nights, I help the Trap-Neuter-Release program in my town by going out to feral colonies and setting traps and helping take the kitties in to be sterilized the next morning.  On Friday mornings, I assist the photographer at the shelter, interacting with dogs who need to be photographed.  I usually stay at the shelter for another hour or more after pictures are done, walking dogs, and socializing with cats.  Some Saturdays I go back and spend another hour of so with them.   I'm enjoying it and feeling that I really am helping those creatures on the days I'm there. 

I was inducted into an order at my church last week.  To be included after so long involuntarily excluded, there are few words to express the depth of that value.   To be known, after being so isolated and unknown, a gift. 

I'm taking greater care of my emotional health.  Really making firm boundaries about what I allow in my world.  This only causes me to be healthier and feel better.  There is no negative to emotional self-care.  Some would argue this point.  Boundaries can be built for many reasons, but generally not amidst poor physical and/or mental health.  Now that I'm not suffering and struggling daily, I can, and have chosen to take care of myself.  Of my heart.

It is a joy to be able to report such a life here.  I have long ended my posts with gratitude.  The thing I'm most thankful for today is my faith.  Faith in the Lord, the He will see me through.  That some way, some how, He will provide.  And faith that He hears my prayers for each of the many very helpless and vulnerable lives I visit every week, human and animal.  And faith that prayers for me are heard.  And faith to be free from worry and fret.  To be free to know that I will do what I can, and the rest, I will pray about.  And that is enough. 

Have Happy Days!

One Random Night and my Faith

Have been feeling well and high-functioning for months. Many months. Have taken on additional volunteer duties, and enjoying my quality of life.

Here's how severely pure adrenaline from my own system can affect me. Drove myself to a meeting at church yesterday in the evening. (It's only a 17 minute drive on Sunday morning, when Tim drives us. But I drove myself yesterday, which means that I avoid the interstate, and it took all of 45 minutes, in drizzly, dark fog.) My hands, wrists, arms ached from holding onto the wheel. That drive was very stressful. Then I sat in the church which is cavernous, as churches tend to be, and all the voices chatting just roared as if they were, I don't even know what. I had to put my fingers in my ears until the meeting began. I sat in so much pain, thinking all the while, "I can't believe I've gotten myself into this situation AGAIN. I'm in too much pain to drive myself home. I'm nearly in too much pain to walk to my car. All the years of coping, adapting, learning, etc, and here I am AGAIN, a victim of this. I should have just stayed home where I'm safe." BUT IT WASN'T TRUE. It was temporary weakness, my doubt in myself, bullying me into believing that I would not be safe. And safety is about faith. I prayed while I sat there, listening to the questions and answers about where to walk during service, and when. I asked for His provision. I asked to be granted safety getting home. I breathed deeply. I rubbed my sore body to encourage as much circulation as I could. Thankfully, a migraine hadn't been triggered. I got up and was first out the door when we were released. You'd think that meant I got to my car quickly. But it didn't. A gentleman even came and gave me his arm, quite kindly, helping me finish getting myself to my car, as it was clear I was struggling to walk. I knew that I had to sit for a while. I had to have patience, let the stillness and quiet of my car try to calm all the adrenaline loose in my bloodstream. In a good deal of pain, both hands really struggled to grip the wheel. Then I remembered that I have safely navigated these shores before. I have been "at the mercy of my body" many times, and never has He forsaken my safety. He gives me enough mental clarity to care for myself or ask for help, and I have not suffered more from having this happen outside home. Its just terrifying. And then, the terrifying adds to the mix of chemicals in the blood. Adding to the pain response.

Another stressful drive home, and couldn't string any words together to Tim upon arrival. I felt defeated but, clearly reality showed that I was not. I was home. Safe. Nothing amiss. But there was still pain to deal with and all that goes with it. Took my nighttime meds and did my nighttime therapy, and went to bed, my mind not in a good place. Had nightmares about not being able to live independently, not having resources I need, not being heard, not being valued, being in danger..... etc. And I realized this upon rising, all those issues I nightmared about, equal a lack of something. But, if I have real and true faith, not just surface faith, but the deep stuff, I cannot fear those "lacks of", not really. I will know, as a result of my faith, that some provision will be made for me. Something I have not thought of will be put in my path to guide me through. I sat at the meeting in fear, talking myself down from a great deal of anxiety response to pain. But, here I am the next morning with nothing at all amiss. I think physiologically reacting to pain response is inherent. And I know that my body dumps adrenaline into my blood at remarkable levels, which I cannot filter and process. That being said, it is quite easy to convince myself that if I would have stayed home, it would have been prevented. And it likely would have. But I would have been excluded. The only way to become known is to show up. And not to worry about the state of my being upon my arrival. I won't have an isolated life again. I've had that and I take responsibility that inclusion is up to me. And coping with my body and its many responses to environment is up to me. But they don't have to be separate. It is difficult, often, but it is worth it, being included. It's not my fault I have to deal with this. It is my responsibility to deal with it, thought. That makes me empowered, not a victim of it.

May you be blessed,

Marie

Adventures on Hold Indefinitely

12/25/18

Well, I have been in relapse mode for 3 solid days now.  I know that doesn’t seem like long but, goodness how I miss my brain.  Just a few days ago, on the 21^st, it was my 50^th birthday, and I can remember being at what felt like the height of all my abilities in my life.  I was more physically active and stronger than I’ve been in so long.  I was sharper and able to quickly solve problems and was mentally fearless.  This quality began to return in September but came into its fullness in October.  I was functioning at 100% of myself.  I think, anyway.    But now, I think I’m at about 50%, maybe that.  I’m in constant pain.  Different areas.  Different kinds of pain.  Stuff that’s hard to treat.  Palliative only goes so far.  And its enough pain that sleeping meds are required again.  I’d been really enjoying sleeping with the melatonin spray only.  I’m not driving again.  Dependent, relying on others.  I’m not able to lift all the things in the kitchen to make a dinner.  I’m not able to have the same kinds of conversations with anyone that I had just 4 days ago.  I had to call pasta “that noodlley food with sauce” tonight in chatting with Tim about the grocery list.  I have very limited vocabulary, and very long waits to use even my primitive words.  And I’m not sad about any of those things recurring.  Here’s what I’m likely to become sad about.  (Thank goodness I am still on my anti-depressant, even though I tried to get my doc to let me come off it in October.  He said, wait until the holidays are over. )  I have a new volunteer position as a Patient Pal at Children’s Hospital.  I go to the rooms of children and babies who don’t have anyone to be with them and I keep them company.  I hold and soothe babies.  I play games with children.  I chat to and sing to them.  I can’t do this job with this kind of brain power limitation.  I will have to stop until I have proper problem solving skills again so that it will be safe for me to be alone with of a tiny sick human.  Even for 45 minutes.  This is a loss.  I worked to gain it, and its something I hadn’t strived for or achieved before.  And now, it is snatched from me.  No more babies.  No more Thursday outings on the train.  No more adventures.  It isn’t safe.  It isn’t prudent.  I got to do it only 3 times.  Once as a shadow, and twice in my own shifts.  I think I will get to do it again someday but, I have no idea when.  But, I’ve decided to just allow myself to feel sad about losing this thing that I love.  That’s my process.  My grief.  You cannot know how exciting it was to ride on a train and spend a day with several other people, trying to spread some of your cheer and hope, after having been fairly home-bound for so, so long.  Now, I return to that dependence.  To having constant pain as my companion.  I’m honestly almost ready to ask for my right lower leg to just be chopped off already.  It hurts that bad.  It’s humbling.  But, I feel proud of how many good things I did in my good days.  I began a huge EDS Awareness project, and have a group of folks who can pick up my slack in the work now that I’m making big mistakes.  I joined myself and my spouse in a church.  (That’s a weird sentence structure, lol.)  I made sure every person I care about heard from me, even if only through a message, and of my love for them.  I will be able to pick this up someday.  I don’t know when.  And I miss my other vibrant, dancing, smart self.  She is a joy.  She is confident as hell.  She is fearless.  She doesn’t not smile, no matter what.  She is curious about herself and her feelings and her motivations.  She tries.  She tries hard because she had the spoon plethora to do so.  Now, a spoon shortage again.  Please let me survive with a smile. 

Synopsis of Renewed Health - 2018

Whoo, I’m in a lot of pain today.  That whole sentence has different meaning this year than in the past 13 or so years. 

Historically, when seasons change, that puts me in a wheelchair for a bit.  I’ve been so sensitive to the barometric pressure fluctuation and temperature changes that I just sort of shut down.  I suffered, truly, when there was a thunderstorm.    I thought it was just par for the course.  I was wrong about that.    I’m hurting today as a result of the weather but, today, I can function.  I’m in pain, yes.  No wheelchair though, and not even a cane.  Just aches, pains.   I did take the day off from my long morning walk due to my pain and the rain combo.  And I’m in full compression.  But, I’m not in tears.  I’m not pulling my hair out.  I’m not praying for relief.  It’s not bad.  It’s annoying, and I don’t want it to get worse.  But I can live with it. 

It’s remarkable how I have changed the internal makeup of my body with a few therapeutic interventions that I stumbled onto.  I more than doubled my salt intake.  That allows me to be active.  I was exercise intolerant before, and it was because I couldn’t retain salt and wasn’t replenishing enough of it.   Of course, I didn’t know that.    I’d get dizzy, my vision would grey, I’d get wobbly, brain-foggy, weak.  All due to a too low blood-pressure, due to the fact that my cells don’t retain salt.  How can my brain work correctly if there’s not enough blood pumping to it?  Well now, I’ve got perfect blood pressure on a minimum of 9g of salt a day.  Every half hour, after the first hour, of sweaty exercise, I take another gram.  It’s THE recipe.  I can tolerate hours of sweaty exercise like this.  Because of this. 

Also, I have fully integrated my walking exercise into my life.  My personal distance record is 7 miles.  I reached that record in just 2 months of work.  I was tired at the end of it, but not unduly worn out.  I wouldn’t have wanted to continue.    I’m keeping joints stable while I walk.  Both knees are braced, and both feet have compression.  The sweat-wicking pants are compression too, and that’s great for circulation.  I’m detoxing in my sweat, which I hadn’t done for so many years.    I have confidence in my body again.  I can rely upon it.  It is more predictable, and stronger.  And my dedication to my exercise screams of self-love.   I’m devoted to having as good a life as I can have. 

Another big reason I’m feeling only annoyed by pain today is all the detoxing.  Some is happening through sweat, but most is happening through coffee enema.  This does sound fairly wacky, and it did to me too, the first time I heard about it.  It took me another year after that first hearing to consider actually doing it.  But, now I am absolutely convinced that it relieves my pain.  And the removal of so many toxins has lowered my sensitivity level.  Exposure to most stimuli that would’ve caused me pain before is now innocent at best, and annoying at worst.  I tolerate odors, though I do put on my peppermint mask when I’m in a car with a scent.  I tolerate sunshine and light bulbs, though I do usually wear my sunglasses.  I tolerate touch without pulling away.  I tolerate sound without feeling like I’m going to explode.  The suddenness of some loud dog barking at the front door doesn’t make me feel like I’m going to vomit.  A bumpy car ride is not something to be endured anymore.   The temperature in my home can be normal instead of cold.   I don’t use my weighted blanket to sleep anymore.  It feels too heavy now.   I can no longer hear buzzing of electricity in the walls.  I can sit in a busy, loud restaurant, and have a conversation with a friend.  All of this because I brought my sensitivity down.    I did this with coffee enemas.  They detoxed me.  I live without fear of migraine happening because I have a reliable treatment for headache pain in them.  This opens up my whole world.  I can socialize longer than I used to.  I can eat different things.  I can stay up a bit later.    I can walk in the daylight.    Anxiety-free.  Because I have an effective tool if my head starts to hurt.  And since my sensitivity is lowered, I don’t get migraines anymore that onset in 5 minutes or less.  Headaches begin small and build slowly over time.  Headaches are reasonable so that my migraine medicine works for me if I’m out of the house.  (I usually do carry an ice hat with me when I leave the house, just to stay comfortable, when one comes on.)  This has changed my life.  I’m not afraid to live because living might give me a migraine.  That’s a real fear.  I don’t have it anymore because of this treatment.  So, however wacky it seems, look at all it’s given me.  More than any medicine any physician ever prescribed.  Inflammation is down.  Keeping it down.  Some folks do this detoxing via sauna.  For me, this works beautifully.  I’m sticking with what works. 

Continued chiropractic care is vital as well.  If I’m ever to be free of headaches, my neck curve must be eliminated, if not re-curved correctly.  Daily exercises to encourage this are ongoing.  It was this care that started me feeling well enough to introduce the other things I’m doing.  It was this care that began the snowball effect I’m loving right now. 

I reflect now upon the last 13 years or so and I understand that the only reason I feel so well now is that I have the correct diagnoses for my conditions.  For years, I couldn’t exercise because I felt like I’d pass out.  Well, that problem is eliminated knowing I need to take salt.  When pain occurs, I now understand what is most likely causing it.  This takes all the emotional reaction out of the picture.  I can just problem-solve.    The other day, I got up from a table at lunch with a friend, and I felt my left hip sublux.  That’s like a soft dislocation.  For a person with healthy ligaments and tendons, a dislocation would only happen after a blunt-force trauma because their joints are held together so tightly.  My connective tissue is too loose.  So, my joints can slip.  This is subluxation.  In the past, when I didn’t know what the hip pain was, I coddled it.  I used a wheelchair so I wouldn’t disturb it more.  I took the weight off it for many days.  Sudden events like this have left me on the floor of shops before.  But the other day, I felt it happen and I recognized it for what it was.  And I worked it back in most of the way.  I didn’t have a cane with me to help me walk, so I hobbled out of the place.  Ten minutes later, walking through Target, I felt like the joint was 90% stable again.  I was walking ok.  I had some pain in my hip and down my leg, but I was strong and could put weight on it just fine.  The next morning, I walked comfortably 5 miles.    You see, all the extra muscle I’ve built kept the joint from slipping as far out as it might have in the past.  And my confidence about my ability to handle the situation was also high.  And my pain tolerance is high because I’ve brought my inflammation and sensitivity down.   So, I handled something easily that previously would have floored me.  I was sore the next day but nothing more.  I know what happened.  I handled it.  No problems. 

Every human body is unique from every other in the details of its chemical balance, its strengths and weaknesses, its ability to express what it needs.  The key is to listen.   And a knowledge of what to listen for.  After I understood how much salt I needed if I intended to try to exercise, it was doable.  Now that I understand my knees are wobbly by their very nature, I support them so they can comfortably tolerate my activity.  An open mind is key.  If I’d been too small-minded to try detoxing via coffee enemas, I’d still be highly-sensitive. 

What I have, Ehlers-Danlos Syndrome isn’t curable.  But, I am living a quality of life now that I didn’t think was possible for me.  In fact, I never even hoped to drive again.  But last week, I drove myself to my nail salon and home.  That little nugget of independence regained, HUGE.  Now, I’m not out on big roads or interstates, and I may not regain confidence on that level ever, but, to be able to drive myself anywhere is a very big step. 

All my medical doctors I have been to since my improvement have said “keep doing what you’re doing”.  So, I will at least follow that “medical advice”, knowing that was what I’d intended to do anyway. 

UPDATE:  New personal distance record is 8 miles.  Done yesterday, 9/30/18.   All miles in daylight.  No sunglasses or hat.  Just me and the blissful sunshine.  My chiropractor had teary eyes when I told him and we celebrated it this morning.  “Your testimony makes me love my job” he said.