Search This Blog

Monday, April 8, 2013

Making the Best of It

This is a piece being written for a blog carnival for Rheumatoid Arthritis Warrior.  The request for this topic, at this time, is perfect.  It's about what we do to keep the disease from taking over our lives.

Many times, I have heard the words the following words: "I don't know how you are doing it.", "You are so [strong, amazing, etc]." and even, "an inspiration".  Wouldn't it be great if I believed I were just one of these.  I am not.  I am human.

Truth is, most likely I experienced an emotional breakdown just weeks, days or even hours before these kind and very well intended, but misplaced words of admiration were either spoken or written...for me.

Having rheumatoid arthritis,  There is no pretty way to say it.  There really are no pictures, words or a song to make look or sound any better.  It is what it is and it IS for the rest of my life.  This summer, I will turn 40.  As far as I am concerned and hope for, I have another 40 to go.  It is up to me how those next years will be spent; not RA.  Not for the most part.

I would be lying if I said I am not plagued with thoughts of all the things I would like to do and either cannot or cannot as easily any longer (Somehow, saying I cannot seems easier to swallow, say and write than, I can't).  It happened this absolutely glorious morning when I walked the kids out to the bus.  I glanced at the yard and for a moment remembered the person I was.  The person who would have got her kiddos on their way and then started at the yard work.  It is sad to know how I won't being doing that, again, this spring.  I think about the gardens and flower bed that will need to be worked and how I wish it was in our budget to revamp the entire yard to make it easier; for me and especially for my already overworked husband.  Even a few raised beds that I could tend to while standing would be so wonderful. This is just the outside of the house.  Inside, I am reminded daily of all that I cannot do as well or at all, any longer.  We have ideas and plans that would make life easier for me in the kitchen (you have no idea how much I would love drawers instead of cabinets for lowers.  Bending to find and then having to support with one hand while trying grab what is needed with one weak hand and safely stand again is tough!) and our laundry really needs to be moved upstairs.  There are unfinished projects that I, well, the Old I,  would have had done lickity  split!  Not to mention the day-to-day things that can sometimes feel like monumental tasks.  It's a lot.  And it can also be too much and really get this girl down.  So I have to work especially hard to make it all work.

I am a list girl.  I need a plan.  So, I make lists.  This goes beyond shopping and basic daily To-Do lists.  I have had to relinquish control of some tasks and to make me feel like every detail is being tended to, I have made out lists outlines for each room of the house.  They are in the process of being typed out, laminated and then filed (maybe in a binder, haven't decided on the best/easiest way for access and use yet) so that my family can easily help and know exactly what I need.  Believe it or not, they actually prefer this. They know what is expected and then can check-off what they have done as they go along.  What some people don't realize is that RA can make talking difficult.  ANY parent gets frustrated when they have to repeat themselves.  A parent with RA gets frustrated on a whole other level.  And I LOVE to talk!

I set smaller goals for myself.  Every day, I expect myself to wake up, make the bed and clear the sink, tables and counters (as well as getting the kids off to school).  If I get those things done, it is a good day. If I get more than that, well then!! Even better!

I play games, snuggle with and listen to my children.  It doesn't get much better than that.

As a family, we cook together. As the weather gets warmer, we spend a great deal of time outside from morning until well past dark.  We have a pool and gorgeous property to enjoy.  We also camp. I love to camp.  In the past few months, we have started spending much more time together, playing games and even sitting down every Sunday evening to watch a favorite TV program, Once Upon a Time.  I love these times.

When I am forced to sit and cannot type, hold a book or kindle, I really allow myself to watch something I enjoy.  I love the simplicity of classic television (Good Gravy!  Would someone please release Wagon Train, seasons 5 and up?) and movies.  Black and white television is wonderful therapy.  I love The Golden Girls, Perry Mason, Lucy and the Beave too.  It's all feel good for me.

I connect with friends and laugh.  I appreciate when they ask, but in general do not like to talk about how I am feeling.  So, for the most part, I like to keep it like it would be if I was "normal".  I live RA every minute of every day and I just want to feel like I used to.  I am so blessed with friends and family, it is crazy.  I don't know what I would do without them.  I love each and every one of you.

I stopped fighting (for the most part) when help is offered.  Truth is, I tell myself that it is for Jim, my wonderful husband.  When someone texts or calls to let me know they are out and ask what I need, I think of how much he will appreciate not having to run out.  We are so blessed.  The past week was rough.  In many ways.  The loss of a pet, I am not well and it was infusion week which means I am feeling pretty bad going in and exhausted coming out. We crumbled a bit, but were never allowed to fall.  So many hands cradled us.  There was help with yard work, shopping, technical, mechanical, errands, meals.    It was exactly what we needed when we needed it. Without ever having to ask. Even if I wanted to, I wouldn't have had the energy to fight all that was coming our way.

I say no.  It still stings when I do. But I have no choice.  Right now, my body is pushing hard for me to hold firm to NO.  I have to put my needs first.  As a woman and mother, this is not easy.

I am compliant with meds.  I research and ask questions.  This sounds simple.  But when I started this journey, I was not compliant.  I didn't understand what was happening.  I was in denial. I walked in and out of the doctors office and let them tell me what was going on.  Now, I tell them and we work together.

I have a good team of doctors.  Period.  This should be at the top of the list.

I look to others fighting this fight or any other fight.  It doesn't matter what you are fighting, it is how you choose to fight.

I try hard to block out any unnecessary crap.  My energy can't be wasted on it.  It just can't.

Lastly, I wake up every morning, put my feet to the floor and am thankful that I can stand, walk and live.  Nobody knows better than I do what I feel like at any given moment.  Or how hard things can be or are.  How many times I say to myself, "I can't do this anymore." and then do.  Or cry.  And then wipe the tears away and keep on.

Oh yeah, sometimes I cry.  This is hard.  RA is a daily fight.  A fight that will never go away.  That realization can be daunting on some days.  RA is full of ups and downs, discouragement, trials gains and losses.  What you could do yesterday, you can't today.  Nothing is simple.  I am going to have surgery soon (hysterectomy). I consider it a simple thing.  In reality, if you have RA and need surgery, it becomes anything but simple.  I will cry again.  And that is OK.  Plop anybody in my shoes for a day and I think they would cry too...and more :)

I tell myself that there is a reason I was blessed with RA.  It is not my place to ask why, but to accept it and make the best of it.  I am far from making the best of it entirely.  It has been more than three years and I have yet to have a good month.  If I am honest, I think I have yet to have a good week.  I am hopeful that my future "don't get me down" duties will include going for a nice walk.  That is it.  A nice walk.

Go big or go home doesn't apply here.  Thinking small produces the most positive results of all! At least for now ;)

No comments:

Post a Comment