Tuesday, April 15, 2014

Living with a chronic illness - the other side of the coin.

I'd like to start out by saying that this post isn't going to be a bitchfest.  It's simply my experience and my feelings and I want to put them out there.  I'm crabby as all hell for some reason tonight, so I'm going to write until I feel better.  Might as well kill two birds with one stone.

I was diagnosed with asthma when I was 8 or 9 years old.  The diagnosis came after years of multiple rounds with bronchitis and pneumonia.  The medication for my asthma (yes, there was only ONE option at the time) tasted like black licorice (kill me please), and there were times my parents had to physically hold me down to get the medicine in me so I could keep breathing.  The medicine treated the acute symptoms (wheezing, gasping for air) and there were no options for prevention. This meant that if I ran around and played as hard as the other kids, my face would turn beet red, I would start to sweat profusely, and I'd start to wheeze and not be able to catch my breath.  Most people thought I got that way just because I was overweight and made snide comments about me needing to get into better shape.

Once you've had a full-blown asthma attack, you are scared to death of having another one.  As your lungs tighten up, you feel like you are trying to gasp for air through one of those little coffee stirrer straws while someone stands on your chest.  It is TERRIFYING.  Then comes the trip to the emergency room that you know your parents can't afford, and then the dreaded shot of adrenaline (again, treatment options were very limited in the early to mid 1980s) that made you shake uncontrollably.  Once you've had one attack, you start to avoid any and all activities that could possibly put you in the position to have another one.  I went from chubby kid to chubby kid who couldn't/wouldn't participate in physical activities, so she only got chubbier.  Then I moved into my teens and early 20s and dealt with a host of mental illnesses, a few of which were chronic in nature.  I'm also a recovering alcoholic.  All of these medical issues require me to take daily steps to minimize the impact the illnesses have on my daily life.  I am one of the lucky ones.  As long as I do what I'm supposed to do, the impact is minimal and sporadic.  However, if I DON'T do what I need to do, things can go downhill VERY quickly.

I was married for 10 years to a man with chronic illnesses.  He was bipolar, depressed, and diabetic.  Again, if he did what he was supposed to do, the impact on his (and our) life was minimal.  Unfortunately, over the years, he did less and less to take care of himself.  Basic personal hygiene went out the window first.  2 years without cutting one's hair or beard is one thing, but 3 months without brushing one's teeth is another.  I found doctors and psychiatrists and psychologists for him. I made appointments and reminded him when and where to go.  He started missing more and more appointments.  He stopped working so I pushed through his application for disability.  I had to keep juggling everything so I could keep raising our 2 young daughters.  I had to apply for childcare assistance because he was not fit to care for them and I couldn't afford full-time day care.  When he laid on the living room floor for three days, not eating and not taking his medication, and only getting up to use the bathroom, I had him hospitalized.  That was the first of a series of stays in the HaHa-Hilton. 

Early on, each time he was released, I would get my hopes up that now he'd get back on track and things would get better.  As he began to say things like, "Life is easier when I'm in the hospital.  They bring me all of my meals, give me a set schedule to follow, and only expect me to keep my room and clean and shower" I knew we were still going down hill.  This is where my compassion began to wear thin.  I was trying to work, raise 2 daughters (while trying to explain to them what was happening to their dad as best I could at their level of understanding), keep my husband from killing himself, and keep my own well-being in check, and now, NOW he has the audacity to tell me he'd rather live in the psych ward because the real world is too stressful?!?!?!?  If you would have asked me the question, I would have told you that I wholeheartedly believed he was doing this TO us.  To  ME.  His refusal to take part in his own life felt like a full-frontal assault to me.

I spent a couple of years living in a very surreal limbo.  I was trying to protect everyone from the truth about what was happening at home and I was trying to protect him from himself.  One day I realized I was just waiting for one of us to die so I could finally be rid of the life I was stuck in.  That is an awful realization to have.  What did I do?  I stayed.  I kept working and kept arranging doctors and appointments and caretakers for the kids and made is life as stress-free as possible.  Why?  Because it was my wifely duty.  It was for my children's well-being.  It was because I'm a loyal and stubborn and I don't like to lose.  But then came the day that I always knew was coming.  The day when I had to stop the madness.  After one more hospitalization, after one more talk with the girls about what was going on with daddy, after crying myself to sleep one more night, I was done.  When the girls looked at me with tears in their eyes and asked, "Mommy, why can't we make daddy happy?  Are we not good enough?" I knew that I was failing them.  All of the cushioning and balancing and explaining wasn't cutting it.  I was allowing my children to be hurt and that was unacceptable to me.  That night I asked him to move out and I filed for divorce 2 weeks later.

I wish I could say that was the end of the saga.  Unfortunately the next year was a string of psych wards, disappearances, a suicide attempt (on his part), and me trying to piece together a new normal for myself and my girls.  Eventually he started getting better.  In a few days it will be 3 years since the divorce was finalized.  In the last 18 months, he has made a new life for himself.  Once again, I can trust him to care for the girls when they are with them.  He is even dating again.  Most of the time I am happy for him, but I still have resentments that pop up. I was finally able to give him an analogy that he understood.  I told him I feel like I survived the tsunami, but FEMA came in and built HER (the girlfriend) the new house.  It's not that I'm jealous of her, per se, and I certainly don't want him back.  I think somewhere in the back of my head, I'm still waiting for my prize.  Some sort of award or recognition for living through that shit and not completely losing myself or my children in the process.  I know, I know, this is real life and there's no prize for being a responsible grownup.  I get it.  I'm just telling you how my mind works sometimes.

I am not unsympathetic to the plight of the chronically ill.  In fact, here are two GREAT articles on that very subject.    15 Things not to say to someone with a chronic illness or invisible illness and The Spoon Theory  Seriously, they're worth reading.  Looking back, I now know that he wasn't sick AT me.  He wasn't PURPOSELY trying to ruin our family.  I accept MY part in it all.  I understand that coddling him only slowed down his descent to the bottom and had I let him fall faster, the pain wouldn't have been so prolonged.

I guess the reason I wrote this is 3-fold. 
1. To get me out of my foul mood,
2. To let others know that if you are living with someone who is chronically ill, you are not alone.  There are others out there who have lived through it and came out the other end, and
3. If YOU have a chronic illness and are dealing with seeming unsympathetic spouses, this might help you understand what they might be feeling.

I know everyone's situation is different, but I truly believe there's help for everyone if we just ask.