Hard Lessons from the Hard Days with RA

January 4, 2011 at 1:12 am (Uncategorized)

A few days ago, in the course of conversation, my husband said that he doesn’t really know what my life is like living with Rheumatoid Arthritis, even though he’s lived right beside me through the whole thing. I try too hard to protect him from what I’m feeling, what I’m experiencing on those bad days. 

I never thought about it that way.  I guess I always figured, who wants to really know the gory details. 

Why would anyone want to hear about the truly horrible, agonizing days?  I thought, ‘I’m not sure I would if the rolls were reversed.’  But I’ve been thinking and, yes, I would.  I don’t want my daughter to hide symptoms from me in her illness so why am I hiding these things from my husband.  So, I decided to put down some of my thoughts and experiences in my life with RA… but I’m not sure what exactly he (or anyone else, for that matter) would actually want to know.

The pain is a given.  Pain that is so invasive and pervasive that you really don’t have many moments truly without pain.  The doctor’s pain scale goes from 1-10 but doesn’t take into account the difference between the constant, deep, throbbing ache in which you wake up and go to sleep, pushing it to the back of your mind because you can’t force yourself out of bed if you don’t–and the sharp, take-your-breath-away pain of using your hands for such wild and crazy things as folding laundry, carrying dishes or trying to open a water bottle.  It doesn’t take into account the frustration of not being able to do simple things – things that other people do easily… like type this note.

Hand in hand with pain goes the stiffness and loss of coordination.  The inability to hold onto things or even close my hand into a fist.  The embarrassment of constantly dropping things at work or knocking things over.  The clumsiness that costs both in replacement dishes and heartbreak when it’s something sentimental and irreplaceable.  The sad fact is that I have a hard time putting on make up or shaving my legs because fine motor skills are simply beyond my ability on some days.

Then there’s the life-stealing, all consuming exhaustion.  The kind that makes some days a thousand hours long because you literally can not pull yourself out of bed.  The days where you have to sit down on the floor of the shower because you just can’t stand up any longer; or sit clutching the edge of the tub in a cold sweat fighting the nausea from trying to push your body to do more than it wants to allow you to do, even if it is as simple as blowdrying your hair or getting dressed.

Medication is a nightmare… and a blessing… and a nightmare.  In the five years since this almost constant flare-up, I’ve tried dozens of medications.  Some work for a while and then the side effects (everything from damaging my liver to 24-hour-a-day vomiting to migraine headaches) make it impossible to continue so we move on to the next thing to try.  This year, I had several months when my team of doctors and specialists seemed to find the elusive and exiting combination of medications to work in not only stopping the joint damage but also almost completely eliminating the pain.  Then winter hit and it was as if that five years of trying and finally succeeding in getting some part of ME back… well, it was all just thrown out the window.  Apparently this is vey common.  Many people with autoimmune disorders need a different medication regimen during the winter months. 

Doesn’t make it any easier to live with though.

That brings us to the emotional toll.  The frustration. The anger.  The fear… I guess all of it really stems from the fear.  What’s to come in the future?  If it’s this bad now, how will I survive 10 years – 20, 30, 40 years — further into the progression of the disease?  I mean, there is no cure.  It’s a degenerative disease and will only continue to get worse.  The things this disease has stolen from me are already more than I am willing to give up.  I’ve given up so much of the person I am to this disease: dates with my husband, events with my kids, my massage career, my goals to write daily often get pushed out for weeks at a time, my independence, the ability to do even the small things to care for my family.

But even more than what it has cost me, what breaks my heart is the cost to those that I love.  My husband not only has to be the primary breadwinner because I no longer can work full time, he also has to do the shopping because I can’t walk on concrete floors that long; he does the laundry because it hurts my hands to fold towels or jeans… even t-shirts; he does the dishes because I can’t hold onto dishes without dropping and breaking them; he does the cooking… well, who am I kidding?  He’s always done the cooking.  It’s not fair that he is required to do so much more than his share – but he does them willingly in hopes that it will bring enough relief to me that I can put aside the RA, the pain, the whole world of misery enough to enjoy the time we can spend together.  And sometimes I can. 

Sometimes I can’t.

And there’s the toll on my kids.  I know they worry about me.  It is not supposed to be that way – I’m supposed to worry about them, not the other way around.  It kills me that my younger kids don’t even really remember a time when I wasn’t sick.  It kills me to see the brief look of disappointment when I can’t do something with them.  It kills me even more that the look is quickly replaced with one of resignation, acceptance even.  It’s just the way it is… but it’s not the way it should be, not the way I want it to be.  I grew up with an ill parent.  I know how hard it is to live with.

I’ve always wanted to be the type of writer, the type of person who can inspire people.  I think that’s why I try to shield those who love me from what I can during the bad days of this illness.  I want them to be proud of me.  Proud of how I handle it, inspired that despite the hard times, I always did my best to make their lives as happy and perfect as they deserve. Not the life that I can actually give them.

But what that actually does is push them away from the life I’m actually living.  When I try to protect them by hiding the horrors from them, I end up having to deal with things by myself.  I get so much satisfaction in being there for them, that it never occurred to me that I’m depriving them of the satisfaction of being there for ME.

I’m going to try harder.  I don’t promise I won’t keep pushing myself too far – or trying to protect my loved ones from the hard things.  But I will try harder.

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