Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

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Putting on Our Oxygen Masks First

Put on your oxygen mask first.  I’ve been told this a lot.  It’s not advice I’ve really taken to heart nor truly understood, and I’m not the first mother or caregiver to admit that.  At least I’m pretty sure I’m not.  It isn’t because I’m a martyr.  I’m not.  That was my mother.  “I’ll just sit over here while everyone has a good time over there! I won’t have a good time! I’ll cry! I’ll be sure to look like I just ate a lemon, too!”

Our mothers.  They do have an influence on us and how we parent particularly if we are women.  I am who I am as a woman and mother, in part, because of who my mother is.  I see that so clearly now.  The epiphany hit me while we were decorating our Christmas tree oddly enough.  Grace and Milly chose the Christmas-themed movie again.  Last year, they chose “Elf”.  This year, they chose “Home Alone 2”.  My husband groaned at that, but I think it’s a funny movie.  I happen to like the pratfalls and the chemistry between Joe Pesci and Daniel Stern.  As we watched the plot unfold, once again seeing young Kevin get left behind but this time at the airport, I remembered my mother.  It wasn’t a painful memory.  Just a reappearance of forgotten facts.  My mother left me at the airport when I was about seven years-old except, unlike Kevin’s parents, she did it on purpose.

It was a strange thing to ponder.  The juxtaposition of experiences wasn’t lost on me.  Remembering my mother’s behavior and my childhood predicament in the midst of decorating the Christmas tree with my own family was surreal.  As a child, I recall thinking that it was normal for my mother to do odd things, and I never thought much of it.  She dropped me off at the airport on a Friday afternoon and simply left me there.  She had “plans” i.e. It was Friday night in 1979.  Let your imagination run wild, and you’d probably land on the right thing when it comes to my mother in the 70s.  I was supposed to take a flight to a tiny airport near Louisiana where my father lived only the flight was cancelled, and I was alone and essentially abandoned at the airport.  She never stayed to see to it that I actually boarded a flight that took off.  I was at the airport until the wee hours of the morning hanging out with the flight attendants in their “room”.  I remember that they smoked and talked about dating, handsome pilots, and sex.  It was the 70s after all.  My father was forced to drive two hours to retrieve me because my mother was unavailable after she left me at the airport.  He finally arrived at almost 3 AM.

All this is to say that it occurred to me in a tangible way that my mother was an irresponsible party girl who simply abandoned her young child at one of the largest airports in the United States so that she could go out and get drunk and get laid.  I’ve always known that on some level, but I really understood that on Friday night.  And, I’ve spent a huge portion of my life not being like her. Defining myself in terms of being her opposite. Where she spent her entire life only putting on her own oxygen mask, even stealing everyone else’s, I have spent my life making sure everyone else had theirs at the expense of myself, in part, to prove to myself and others that I am nothing like her.

This is the root of my caretaking.  Not caregiving.  Caretaking.  Why discuss this? I’m talking about this because it’s December 1.  For many, the advent of the holiday season is the beginning of the most stressful time of year.  We caretake by spending too much money on everyone at the expense of our own financial health.  Guilty! We do too much, never saying no, because we don’t want to hurt anyone’s feelings.  We stay up far too late baking, preparing, decorating, and making sure that everyone else has a meaningful holiday even though we might feel like we’re going to collapse.  We feel as if we’re responsible for everything even though we’re not, but when you’re a caregiver you are responsible for a lot.  This is a triggering experience because it can bleed into old caretaking habits and beliefs like, “I’m responsible for you and your happiness.” So, we put on everyone else’s oxygen mask and become too exhausted to put on our own.

Some people get an emotional charge from doing this.  They need to feel needed.  It gives them a sense of worth.  Me? That was never my thing.  I tend to feel cloistered.  I needed to know that I wasn’t her, and, at the same time, she parentified me.  I was forced into that caretaking role at a very young age.  Children of alcoholics will be familiar with this dynamic.  The best thing you can do for yourself and your family is a personal, fearless inventory and be honest.  Is this familiar?

Do you find yourself always concerned about other people’s needs? Do you feel that your needs don’t really count? Do you feel as though you have to take care of other people’s feelings, but no one seems to care about yours? Are you surrounded by people who need you? Is your self-worth dependent on being needed?

Do you go out of your way to make sure that you don’t cause anyone discomfort? Do you find yourself trying to help someone with an addiction, but you just enable them to continue? Do you believe that you know better than other people how they should run their lives?

If you have the Caretaking Pattern, you are caring and compassionate toward others, but often at the expense of your own needs or desires. If you have this pattern strongly, you will find yourself constantly taking care of others, financially, logistically, and emotionally. At some level, though, your caring comes with some strings attached. You have a deep desire to be appreciated for all that you give to others, rather than giving without concern about what you get back. You may hope that people will like you or not leave you in return for your efforts.

You may take pride in being a “mind reader.” With a strong Caretaking Pattern, you get a lift from providing assistance that you believe people need, even before they ask for it. You may frequently give too much help, and often at the expense of taking care of yourself. You may regularly be the last person to leave a party even when you’re exhausted because you’re always helping the host tidy up. You may believe that all of your giving to others is building up a pool of help and favors that you can call upon someday. Or you may believe that by reading the minds of your loved ones, you will be able to expect them to do the same for you—that they will know and deliver the support you want without you ever having to ask.

Some level of the desire to help others is natural and healthy. We are, after all, social beings who need interpersonal support to get along in the world. But if you find yourself regularly sacrificing your own comfort for the sake of helping someone else—for instance, if you give up a therapeutic massage appointment because your sister “just has to have your opinion” on a new couch she’s buying—you very likely have the Caretaking Pattern.

In fact, your Caretaking part may assume that other people aren’t as capable of taking care of themselves as you are. You might believe that you “know better” when it comes to what would be good for someone else. Unless this person is a small child, though, it is unlikely that your perception of someone else’s needs is more valid than their own.

For a variety of reasons, you may not have received feedback from others that your Caretaking is a problem. If you have the Caretaking Pattern, you probably attract people who may, on some level, like being taken care of or who become dependent on you. If you have a Caretaking Pattern, you may have people in your life whom you believe would suffer if you were to stop caretaking them, and you may have a sense of enjoying “being needed.”

The key to knowing if you have the Caretaking Pattern is to look at how often you are meeting your own needs. If you are always putting yourself last, if you are tired and feel as though you are responsible for making sure other people are okay emotionally, logistically, or financially, you have the Caretaking Pattern.

False Belief of the Caretaking Pattern: I am responsible for other people’s feelings. I must do what I can to make them happy and keep them from feeling pain or discomfort. (from Beyond Caretaking)

Be good to yourself this holiday season and put on your oxygen mask first.  If that idea is foreign to you, makes you feel guilty, or even causes you to think something like, “I can’t do that! What about ______?”, then explore those responses.  Develop some curiosity around why your needs are secondary to everyone else’s.  I know what drives me.  It takes time to learn new habits even when you know what you should be doing.  The ‘doing’ is the hard part.  Let this be a gift to yourself and consequently those you love.  The gifts of personal responsibility, respect for boundaries, and autonomy are three of the best things that you can offer someone.  In turn, you are left with a sense of freedom, a sense of self, and personal empowerment.  The result? Peace within our relationships.  Whatever your belief system, peace is one of the primary blessings of the holiday season.  It is one of the wishes that everyone passes on to another during this time of year.

Shalom.  Peace.  Pax vobiscum.  Peace on Earth.  Good will towards men.

May that be true for you as we all find our way through the din of the holidays.  May you make your peace as you put on your oxygen mask first.

Shalom…

Resources:

Beyond Caretaking: Balancing Giving with Self-Care by Jay Earley PhD

Dr. Earley’s website

Stop Caretaking the Borderline of Narcissist: How to End the Drama and Get on with Life by Margalis Fjelstad

 

Using Your Blue Mind

 

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I came across this book while reading a recent issue of Psychology Today.  By the way, Psychology Today is a great magazine.  You might not agree with everything going on in modern psychology, but there is usually a gem in every issue–even a tiny one.  Like this book recommendation.

The Washington Post reviewed it recently, and the last time I checked it was #12 on the New York Times list of best selling science books.  Not too shabby.  So, what did the Post have to say about Nichols’ book?

““Blue Mind” is a fascinating study of the emotional, behavioral, psychological and physical connections that keep humans so enchanted with water. Nichols examines seas and oceans, lakes and rivers, even swimming pools and the contents of our bathtubs in a study that is both highly readable and rooted in real research. He is a marine biologist whose passion for our planet’s water goes far beyond the classroom. He urges us to get closer to water, not only for our own sake but for the environment and a healthier future for us all. The blue mind of the book’s title refers to the neurological, psychological and emotional changes our brains experience when we are close to water. Nichols draws on science and art, hard data and anecdote, and plenty of experience, to explain our blue mind in detail. Not just what it is, but how we can enter into this state and — perhaps most important — why we should do so…The benefits of nurturing our blue mind go beyond just feeling good. Our blue mind is up against two other common states, as Nichols explains: red mind (stressed, anxious, overactive yet underproductive) and gray mind (numb, lethargic, demotivated and unsatisfied). Red and gray mind states are products of our modern lifestyles, habits and choices. Blue mind is a natural state that we all instinctively know but that many of us have forgotten…Ultimately, Nichols suggests that being close to water can make us not only happier, calmer and more emotionally healthy, but also more successful in life, relationships and even business. By tapping into an evolutionary urge that lies dormant in us all, we can access a powerful mental capacity for greatness. It’s something we all have the ability to do. This book shows us how to recognize it, stop ignoring it and tune in to it.” (Nicola Joyce, Washington Post)

Well, that’s interesting.  I grew up near water.  I have always lived near water.  I have always said that I could not live in a place where there was no water, and I never have.  I was even a competitive swimmer.  I can relate to the points raised in this book.  But, I wanted to make this premise more accessible.  I live in lake country, and living on and around lakes defines the culture of my state.  Many people live with lakes in their backyards.  We are not those people.   We live in an urban environment.  How could I bring the water here? Macro to micro as it were?

I decided to pick a place of high conflict in our house and add a source of water–the dining room table.  Everyone gathers at the dining room table to do homework, crafts, and eat.  It’s the place to be, and it’s the place to be contrary and persnickety in our house apparently.  Oh the arguments that have started in this space.  Rather than continue to henpeck everyone for arguing, I wondered if I could discourage cantankerous moods by adding more peace? Something like ‘Be the change that you want to see’? Make the space more beautiful.  More lovely.  And, of course, add a source of water and find out if Nichols’ notion was worth anything in a home environment.  The spas, hotels, and high end restaurants certainly take advantage of the idea of the blue mind.  Could I?

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i added a rock fountain to a rather inconspicuous corner.  It’s not a loud fountain.  One has to be quiet to hear it, but that might be the point.  So, what happened?

Doireann sauntered in as she does and commented, “I like that.  It’s very Zen.”  She started spending more time at the dining room table.  Eadaoin is very high affect so she squealed with delight.  “Ooooh! A fountain! Pretty!” She sat directly next to it when she ate.  Grace commented as well.  “I like this very much.  It’s peaceful. ”  Milly wasn’t sure about it because it was different.  What I did notice was that when someone started to argue, another girl said, “Hey, we should stop.  Mom went to all this trouble to make it peaceful in here.  We should respect the peace.”

Did you catch that? “We should respect the peace.”  I didn’t tell them to do that.  Somehow adding a new element–a source of water–into the room changed the environment enough that the girls responded in such a way that they wanted to maintain the atmospheric change.  They wanted to behave in a way that would promote peace–at least in that space.  They also enjoyed the effect that the changed atmosphere had on them.  That’s significant.

It’s not easy to get kids to take ownership of their own home environments, but when it happens it’s a big deal.  In any case, I recommend Nichols’ book to you as well as perhaps introducing a small source of water into your own home.  It’s not a big investment, but it might produce huge dividends.

Living The Dream

Life is a strange, circuitous road sometimes full of detours, cul-de-sacs, pit stops, and unexpected turns.  Just when you think that you know where you’re going, something happens.  The car breaks down.  The road is closed.  You find out that Google Maps was wrong, all wrong! You should have taken that left turn at Albuquerque.

Sometimes you just have to go with the flow even if you don’t like where the flow is going.

I always think I’m going with the flow until the flow fights me.  It is then that I realize that I’m trying so very hard to push the river.  That seldom works out.  Have you ever tried to push a river? You drown.  So, I metaphorically relaxed into the circumstantial flow and went with it as much as I could.  This is not me.  I fight.  I push.  I fix.  I am the embodiment of ambition at times.  I have to be.  It’s how you get things done.  It’s impossible to care for a child on the schizophrenia spectrum with no ambition while compensating for a spouse who is completely avoidant.

It isn’t sustainable.  This is what my therapist told me last winter.  I would not be able to sustain that level of energy expenditure or a relationship longterm.  My response? I have to.  If I don’t, then who will?

She predicted I would become ill.  She predicted that my marriage would fall apart.  She was right.  In the midst of all these revelations, however, I think I can almost feel gratitude.  It had to stop.  What fills in the gap then?  The overcompensation had to end to be sure, but what does one do with that information? Life has a way of forcing solutions sometimes.

Eadaoin’s therapist called me yesterday.  She is referring Milly to the crisis stabilization program.  Jane will be back in our house again.  Both Grace and Eadaoin have used that program in the past.  It allows for immediate in-home access to mental health services and a fast track to psychiatric services.

Milly has an anxiety disorder in addition to an autism spectrum disorder and sensory processing disorder.  She is not doing well.  She has been writing me letters daily expressing her anxious thoughts and waking up in the morning saying, “Sometimes I wonder if it would be easier to die so that I wouldn’t have to feel so anxious.”  Grace has been picking fights with Milly daily because she can’t self-direct.  Grace really needs day programming in the summer, but there is none.  Summer is unpleasant in our house.  We have a lot of mental health needs, and I can’t cover it all alone.  So, I do a lot of behavior management, and Milly is losing her ability to cope with Grace’s behavior.  I don’t blame her.  There are days I’m there as well.

During this phone call, Eadaoin’s therapist was honest.  She indicated that it was time to throw a lot of resources at our family, in part, because I had been the sole therapist and case manager for too long, and we needed support.  I didn’t have to manage a child with schizophrenia, a child with autism, and a teen with a mood disorder on my own in addition to a new health diagnosis.  She kindly mentioned my husband as well.  “You are not alone in this.”

I want to believe that.  These past few years have been indescribably difficult, and they didn’t have to be as hard as they were.  Had I had a partner in this, the journey would have been far more meaningful and so much less isolating, but, at the same time, I’ve shared this with friends.  Bonds have been formed indeed.  Unfortunately, they have not been formed with the right person.  We deepen our connections with others through ordeal.  We also lose those connections through ordeal.  It all depends on what happens during those trials.  Do we draw near or isolate? Life is predictable, however, in that it will always provide us with opportunities to try again.  Circumstances are always fresh with ordeals, great and small.  We will always have another chance to try again and put into practice what we learned.

Such is the case presently.  I have another chance to practice self-care.  My husband has another chance to practice being a partner.  I begin another little jaunt with a bit of a limp because I have a flair for the dramatic.  Next Monday, I have the profound pleasure of having a local anesthetic injected into my right hip joint.  It sounds terribly exciting, I know.  You are all lining up behind me to experience what is sure to be some kind of euphoric bliss.  Should, as my Scandinavian orthopedic surgeon said, the angels sing and I feel no hip pain after said injection, I have to have hip surgery! Clearly, I am the female equivalent of Rip Van Winkle.  I have aged thirty years in six months since I have a hip injury and no clear idea as to how I achieved it.

So, in the name of self-care, I have already lined up someone to clean my house because I really have lain in bed and dreamed that my whole house was clean.  As Doireann said yesterday after I received my estimate, “I feel like this is your wet dream, Mom.  Having someone come and clean your house.  Yeah, you should totally do this.”

It is my wet dream! So, I’m starting there.  My husband has his first intake appointment ever on Thursday (Mwahahahahahahahha!) with his new therapist.  Milly will be getting some much needed services.  Eadaoin is still chipping away at DBT.  Grace is immersed in her services.  Doireann is processing her life experiences, and, apparently, I will be reaching the heights of pleasure while watching someone else clean my house while I wait to find out the fate of my hip.

I’d say that’s a typical summer for us…

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Mis Ojos!

I was sitting in my neurologist’s office last Thursday.  Rachel, her nurse practitioner, was seeing me that day.  I was there to discuss weaning off the calcium-channel blockers that were prescribed to put an end to those dreadful cluster headaches.  Verapamil worked! The cluster headaches stopped, and the drug also reduced my migraine headaches by about 75%! The thought of taking on yet another prescription, however, seemed annoying.  Between Grace and me, we could run a pharmacy out of our home.

My doc was also not satisfied with the MRI results or the ophthalmologist’s notes on the suspected optic neuritis.  I’m going to call him Dr. Charisma for the sake of irony.  My neurologist, therefore, decided to order a blood panel in the form of seven vials of blood being tapped from my arm.  The lab results hadn’t come back yet when I was in the doctor’s office on Thursday so I was put through my neurological paces by Rachel–the drunk walk, the interrogation, etc.

“You have the most sordid neurological history of anyone I’ve ever met.”

“I’ve always been a high achiever.”

“Are you still smelling the burning smell?”

“Like now?” (I have to give my clinicians a hard time every now and again)

“No, not now.  Recently though?”

“Nope.  Although I will say that I have a greater empathy for my daughter.  Olfactory auras smell real.  I was convinced that something was on fire.  I had my entire family searching the house for something that was burning.  I felt very foolish when I realized that it was just an aura.”

“Your daughter? Oh, right.  She has….”

“…a schizophrenia spectrum disorder.  Sometimes she hallucinates.  You know, experiences things that are not real.  After we realized that I was having an olfactory aura, Grace patted me on the knee and said, ‘Don’t worry, Mom.  It happens to me all the time.'”

Rachel stared at me in stunned silence.

“Oh, come on now, Rachel! You’ve gotta lighten up! This is my normal! If you can’t laugh at this stuff, then what? You have to find the funny!”

She did manage to lighten up on Friday when she called me with my lab results.

“Hey, it’s Rachel! I have your monster lab results!” Then, she was quiet.  “Was that too much? After your visit yesterday I thought I could give humor a try.”

I did laugh when she said that.  Look at the NP from my neurologist’s office trying to be funny while delivering test results.  Aaaaaw….

“So, every test was normal except for your ANA.  Those titers were too high for even a false positive.  You are going to the rheumatologist.  We’ll set up a referral.”

Oh boy! So, I don’t have MS! I have…something else.  Hmph.

I felt a little low after Rachel’s call so I decided to give up the ghost and get my eyes examined.  I don’t know why I decided to do that.  It may be that I realized that something was indeed not right in my body, and I needed to stop avoiding the truth.  Also, I really can’t see well.  It all just happened at once.  A month ago I could see quite well.  Currently, I am wearing two pairs of glasses at once in order to see the words on the computer screen, and I still can’t focus well.  I think that means that I need an eye exam.  Grace went with me.  During my eye exam, the doctor stopped, patted my knee, and said with an empathetic sigh, “Your eyes just gave up.”

My eyes just gave up?

“Your eyes just gave up.  They have been trying so hard to focus and do the work of seeing that they finally just stopped trying.  They didn’t have the proper support in the way of the right prescription.  You are going to leave here with a much stronger prescription and…bifocals.”

BIFOCALS!

I don’t know if it was the stress or if I just have a problem, but I started laughing.  I laughed so hard that I nearly fell out of the exam chair.

I tend to think in terms of metaphors.  I am currently unable to focus on anything and subsequently see properly because my eyes gave up.  They lacked the proper support.  I needed a new prescription.

Doesn’t that just feel a bit too much like life? It doesn’t matter who you are or what you’re dealing with; you need the proper supports in place in order to flourish.    We’re supposed to have our eyes checked annually.  I haven’t had my mine checked since 2009.  Why? Well, I put myself at the bottom of the list as do many mothers.  The needs of our husbands and children come before our needs.  I hear many women say, “Oh, I’m fine.  I don’t have time for ________.  I’ll get my mammogram next year.  I’ll get my pap smear later.  I’ll take care of _________ after my kids get their glasses.  They need their glasses more than I need mine.”  I want to ask a question.  Who is going to replace us when we have ignored our own needs so long that we’ve ignored ourselves into a corner?

I really hate to admit it, but that’s what I’ve done.  If I examine myself, then I can come up with some reasons that I’ve neglected to look after myself.  None of them are great, but they’re reasons.  My husband is the same way.  His reasons are about as legitimate as mine.  Not very.  And now my health is very much on the line.  It’s not just about chronic migraines or fibromyalgia.  It’s something else.  It’s an autoimmune problem.  Could this have been prevented? I don’t know, but I can tell you that I would not be wearing two pairs of eyeglasses to see had I taken better care of my eyes.  That is preventable.

I know that it’s difficult to take care of ourselves when we are caregiving, but I encourage you to put in the time and make your own health a priority so that you can ensure that you will continue to be a healthy presence in the lives of those you love.  You can’t care for your loved ones if you aren’t there.  Learn from my mistakes.

Know what I mean?

P.S.

Do any of you see a rheumatologist? What qualities do you look for in a good rheumatologist? Conversely, what qualities do you look for in a bad one?