Friday, September 28, 2012

Wanted - Clean Pee

It feels like we live our life on a knife’s edge, balancing between our new normal of nominal and normal health issues with the accompanying low levels of anxiety and the jacked up concern and hyper vigilance   associated with very real, persistent infections.  

Oh yeah, it’s hyperbole to use the knife’s edge imagery but I’m living this and I can be hyperbolic if I want to….”It’s my party and I’ll exaggerate if I want to…”

Today, balancing on that knife’s edge, Marty has one more in a series of urinary tract infections.  We had evaded this particular malady for several months only to have fought it four or five times over the most recent months.  

Urinary tract infections scare me, for a lot of reasons.  For someone in Marty’s condition they can be really debilitating.  It makes her tired, weak and at times a bit confused, in other words they make her sick.  All of the infections that are somewhat omnipresent to the chronically are disconcerting but UTI’s are sneaky, hard to discover and can be deadly if not treated properly.  That’s not hyperbole. 

It’s a catalyst that moves us back to a time where I obsessed daily over Marty’s health and the potential for catastrophic illness.  That seems like a life time ago.  Then a sequence of events brings dark days, fears and the reality of chronic illness back to the forefront of our lives. 

We have been to get the advice of Great and Wise a couple of times and I am reminded, every time we darken his door, every time he kisses Marty’s cheek, every time he offers wisdom and comfort, how fortunate we are to have access to outstanding, compassionate  medical care.  Marty would not be here without it.

In our most recent trip I asked Great and Wise about the potential cause of the UTIs, if he could tell from the type of bacteria identified if it was a hygiene issue, maybe we are doing something wrong.  Something has changed and we need to cover all of our bases.

His response, “Almost all UTIs are hygiene issues, they just are.” 

I’m sure he is right, I’m pretty sure he right in Marty’s case, I’m pretty sure he’s right when you think about how the female body is constructed, so wonderfully tantalizing, so inefficient, so susceptible to bacteria.  The whole hygiene issue is much worse with someone who has suffered the strokes Marty has.  It’s a problem.

The hygiene thing is a pretty delicate subject and to preserve some of Marty’s dignity I have intentionally avoided pulling the curtain back on that part of our life.  But, to quote my delicate bride, “the dignity train left the station a long time ago.”

Since the 2nd stroke Marty has been incontinent.  It’s something I know she hates but she just plain and simply deals with the indignity of having people care for her in that way and accepts the process for what it is, a necessary evil.

Everyone who cares for Marty, all of her caregivers, me, we work at doing our jobs with respect for her and her privacy.  For Marty and me, well, we try to find some humor in the whole process.  I have learned a lot more about things, down there; than I ever thought I would need to know.  It’s one of those deals where if I knew then what I know now I would know a little bit better where the right buttons are on that mysterious female body.  Anyway…we joke, we laugh, she laughs and promises she would do the same for me if it ever came to it.

Part of the UTI problem is the same issue with any medical problem Marty may have, she can’t self-diagnose and she can’t really help me with the diagnosis.  She doesn’t really know she is sick; UTIs can be sneaky like that, especially for someone who is compromised in anyway.  It’s only when we notice other symptoms, lethargy, confusion, smell, that we know something is amiss.  Then we have to figure out a way to get a clean urine sample.

We have found a couple of ways to achieve our goal of clean pee, but any clean urine sample, regardless of how much or how little, is hard won.  I have found a couple of things on the medical equipment market that allow us, with a little work, some scissors, glue and a sense of humor to do the trick.   We have all of that plus a medical support system that allows us to drop off a sample in the ubiquitous grocery bag at any time.

Right now Marty Jean is on antibiotics, again.  We know which antibiotic because Great and Wise told us the right one based on the cultures.  That’s the good part.  I worry about Marty always taking antibiotics, I worry that sometime it won’t work or that we will miss something and will wait too late or we will have to go the hospital because the antibiotic is no longer effective.  Those are just a few of the bad parts.

We will continue to search for reasons Marty is now getting these recurrent infections.  The caregivers are all aware of the need for care in hygiene, I’m aware of the importance of caring for Marty properly.  We will figure it out, just like we always have.  

I worry, that’s my end of it.  I worry about the knife’s edge and which side our life will fall on any particular day.  Marty’s end is a lot harder; she has to suffer through real indignities that most of us would never accept.  

Being sick is hard, it’s not for the faint of heart or easily embarrassed.  It’s what we have to endure; it’s what the people who love us do for us when we can no longer do for ourselves.  It’s the very real dirty part of life.

Friday, September 21, 2012

Out of Rhythm with Life

It’s all about rhythm baby.  It’s about the rhythmic, every day ebb and flow of life, it’s about being in the stream, the every day, everything happening around you life.  When you are in it, getting up, driving to work, coming home from work, you got life’s rhythm with the masses.  When you are out of rhythm, when you are out of the mainstream it’s like dancing alone.

When you are chronically ill or caring for the chronically ill you develop your own rhythm, too often separate and apart from the rest of the world.  You become internal, everything focused on the care and feeding inside the home.  Most of your time is spent dealing with what is happening in a very narrow spectrum of life, the person you are helping.

It’s hard to integrate into the ebb and flow of life when you become so single minded and all of your focus is so internal.  I, we, Marty and I don’t live in the regular world, we don’t experience the world in the same way we once did, we have missed much of life outside of our home and immediate circle.

Being out of that flow is isolating.  You see the world moving past you, you see other people living a life you wanted, you see other people living a full and healthy life and you can't help but be a bit envious.  When you are sick, when you are caring for someone who is sick, when you are out of rhythm with the rest of the world, it can be lonely.  

The cure to that isolation, that loneliness is simple, getting out into the world, doing things, talking to people, participating.  Easier said than done, easier thought than completed.

You find that change, small evolutionary changes are always happening in all of your old established groups.  When you are out of the loop and you aren’t living that change you get left behind, like you somehow missed the rapture and nobody told you.  It’s like a new complicated version of software has been introduced everywhere and you are still using version 1.0.

When you try and reintegrate into the familiar, those things you used to live, the changes that occurred without you makes everything and everyone unfamiliar; the unseen changes emphasize that you are out of sync with life.  It makes it a little intimidating to try and integrate back into life.

Personally  I love people, I love to chat,  and I love to listen to people;  but my view of life, my day-to-day experiences have become so narrow and restricted I’m not sure how well I relate anymore and I’m not confident in my ability to be, well, interesting.  I find getting back in the world daunting and a little frightening because I’m not sure of myself or my ability to relate anymore.

As a result, Marty and I do a lot more solo stuff and avoid too many things.  I know we need to be about more, involved more, it’s just hard to commit to take that step, to take that chance.  The fear of rejection, the fear of standing alone in a corner while the world keeps moving is , at times, too much to overcome.

Over the years Marty has helped me to understand why I do some of the things I do, why I feel some of the things I feel.  It’s a perk, most of the time, of being married to a very self-aware psychologist.  She taught me to look inward and figure out why I act the way I do.

I don’t particularly like what I see; I don’t particularly like the role of the home bound, introspective introvert.  I liked it better when we, emphasize the word we, were engaged, involved and participating in life.  If felt better to be a part of things and not on the outside looking in, and it always inspired confidence in me that if I was ever relegated to the corner watching that Marty would be beside me and I wasn’t watching alone.  I’m not good at alone.

It’s why I thank God for family, the comfort and the confidence of family.  It’s what makes family such an important aspect of recovery and life for the ill.  Family, on the whole, will always take you, will always talk to you and will always be interested in what you do, what you can say and how your life is rotating around the axis. 

Isolation, its part of the life, its part of our life.  Its part of the life of the chronically ill and those that care for the chronically ill to feel like life, friends and opportunities are passing them by.  There are just too many parts of that life, our life, that create barriers to participating in the flow.  

It requires courage, confidence, energy and time to break the cycle we create.  Breaking the inertia of the isolation requires strength and energy.  I’m working on it; I’m trying to overcome this, this one more barrier to normalcy.

It’s important to me, it’s important to Marty.

Friday, September 14, 2012

A Lesson from My Older Sister

One of my basic life philosophies in life is to accept responsibility for myself and how I feel.  I’m a great believer in individual accountability and being responsible for your own stuff, check with my children, it’s a mantra.  To me, you abdicate control when it’s someone else’s fault that you feel bad.

My brother-in-law, my political alter-ego, the best debate in the house, has been sick; he has been in the hospital for multiple days, sick, dog sick, filled with nausea sick, feeling terrible.  My sister, the elder of my siblings, you know, the bossy one, has been camped with him at the hospital each and every day for going on three weeks.  What he is going through is awful, what she is doing is truly God’s work and requires blessings.

The brother-in-law finally recovered to the point he could have surgery to remove his gall bladder which was the evil culprit in this drama.  He is feeling better and starting the slow, one day at a time road to recovery.

I have been back and forth a bit with my sister, texting; the 21st century way to extend concern and get updates.  A recent text,  “…it’s amazing how much better I feel when her feels better….”.  From my elder, mostly wiser I sister, truer words, etc...

If you live with someone long enough, if you love with someone long enough they become such an integral part of your being you hurt when they hurt, you feel success when they succeed, you feel better when they feel better.  Your worry for them when they are broken is real and their victories are shared victories.

I know this because I worry to the point of obsession when Marty is “off her feed”.  When she laughs, when she smiles, the sun shines for both of us.

Yes, this stands in direct contradiction to one of my life’s philosophies, you must be responsible for you own feelings, so much for basic life philosophies…

It feels like Marty and I have always been hyper-linked in some form or fashion, never more than when she had the strokes, never more than when she lay in a coma, never more than when she was deathly ill, never more than when she was hurting.  

In spite of the years since the strokes, in spite of the months of improved health and well being, in spite of our shared experience at this new normal, it’s still the same.  To ask me how I’m doing, you should ask first how Marty is doing.  

I’m really not the self-sacrificing, self-effacing type, the type of guy who empathizes to the point of paralysis; I’m just not that guy.  I do have empathy; I can sympathize, and then move on with my life.  This is more than empathizing, understanding another’s pain, this is a step up born from a symbiotic relationship Marty and I have developed.

If Marty is feeling bad, if she is off just enough for my prying eyes to notice, if she is a tad bit hinky (southern colloquialism)  if she is sick or on the verge of sick, I’m just as hinky.  The worry, the tension, the anxiety come flooding back and all of the sudden I’m there, too focused, too worried about her.  I’m not sick, just obsessed.

I don’t know how to separate myself; I don’t know how to kick in an objective view of things and not feel worse when she feels bad or feel better when she is feeling good.  Even with all of our experience with this illness, with all of the time and angst spent dealing with health crises I can’t seem to divorce myself from how Marty is doing.  My sense of well being is captive to the life and health of another.

It’s one of the unintended consequences of being a caregiver, or a spouse, or a parent, or one of many things where you love and care unconditionally about someone else.  When you do, you just can’t help but become part of who they are and how they feel.

I am always surprised I find myself so intimately linked to another person.  I’m not sure why it’s so surprising, I’ve been with Marty, supporting her, being supported by her, most of my life, certainly all of my adult life. 
It’s so counter-intuitive to one of my mantras, “don’t let someone else dictate how you feel.”

Big talk.  I’m clearly still learning.