Flair

Pain is usually a personal experience.  Everyone experiences it, describes it, and is affected by it differently.  Yet the "McGill Pain Index" is a medical tool that shows how even though the way you experience pain may be different than how someone else experiences pain some disorders have unifying key words to describe the pain.  This medical tool helps physican's understand and treat patients accordingly.  The McGill Pain Index rates RSD/CRPS/Causalgia the highest level of pain amoung chronic pain disorders and uses the comparsion of common acute medical problems.  This is a great medical tool but in the real world it means nothing.  Even amoung other RSD'ers the only word that means anything about our joined pain is FLAIR. 

I am going to do my best to explain what a Flair is and the effects of it has on RSD'ers.  Please bear with me.  The best way I can do this is to re-tell the story a recent flair, a sort of walk in my shoes if you will. 

April 13th - 14th, I had a busy weekend catching up on chores and playing with the kids.  That Monday morning I woke up and had to get the kids ready for school.  I was feeling energized which was a good thing considering my to-do list; laundry, coupons, groceries, dishes, cooking, and my regular Mommy duties.  After the kids were off to school my first job was to clip coupons and finalize my grocery order, I like to do this from the comfort of the couch.  Leo was home with an upper resperatory infection so he was laying down on the other couch watching tv.  Okay, in a way we were watching tv together but I really was multi tasking with my coupons and internet grocery order.  That's when it happened.  The flair.  Inside of 60 seconds the cold froze my bones and the deep freeze of the burn felt like my leg was slammed inside of a heavy vault door.  I hadn't moved an inch but I could feel the way my foot suddenly swelled and my sandle became tight.  The weight and material of my jeans felt like a lead weight of sandpaper.  Within 60 seconds I went from feeling carefree to incredible pain.  I didn't fall, jam, or bump my leg.  A flair doesn't need a reason.  This is part of living life with RSD.   I have learned to live in anticipation for the flair but I am never fully ready for the impact of it.  The impact is the hardest part of a flair in my opinion. 

I took a moment to sit and compose myself.  No matter how long I live with RSD a flair always brings out the frusteration and sadness with the reality that RSD brings in my life.  My SCS was in my purse on the coat rack.  I didn't say anything to Leo.  I only had to walk one room to get there but the moment I stood up I felt the full impact of the flair.  I could not put weight on my leg.  Leo looked at me and I think his remark was "Shit, really?"  I couldn't walk, couldn't put weight on my leg but I still needed to get to my SCS.  Usually I would have asked Leo but he was sick and needed his rest.  Sometimes I need to do it myself, keeping a sense of independence.  I did what I always do during a bad flair, I dragged my right leg behind me using the strength of my left leg to carry my weight.  I didn't allow myself to think about the pain, I needed to stay focused on my goal.  My goal was to get to my SCS, turn it on and then I could let emotion roll over me.  When I reached the dinning room table I gave myself a moment to hold on, regain my breath. I turned the stimulation and let it flow through me.

The SCS is not a magic pill.  Turning it on does not take me from dragging my leg behind me to immediately being able to walk with the full weight placed on my leg.  The only immediate result of turning on the stimulation is that a slight edge is taken off of the pain.  Patience is needed with expectations of the SCS actually with any type of treatment plan for RSD.  I must use the SCS, rest, heat, mild excersizes, and in time the flair will subside. 

How did the rest of my week play out?  Monday I spent the day on the couch.  I made dinner but did not eat, the pain took away my apetite.  I went to bed early and Leo took care of the kids.  Tuesday after getting the kids ready for school I spent the rest of the day in bed.  Leo was still home with his upper respitory infection but took care of the kids when they came home.  Wednesday I pushed my limits to do some dishes and put my groceries away.  Thursday and Friday I did the bare minimum around the house to help my leg rest.  During Wednesday through Friday I would use my cane to help me walk or I would limp from one room to the next.  Saturday I began to feel stronger so I cleaned up the kitchen and did some laundry.  I rested afterwards and that evening we took the boys for a family movie. I was limping but I was strong enough to not need to use my cane.  Sunday my leg was a little stronger.  We went to church and then to Leo's parents house.  I limped through a little shopping trip and we looked at a house with Lorena (she and her husband are house hunting).  The amount of walking took it's toll and soon my limp and leg were worse again.  Leo and I both knew I had over done it, walking too much.  Each night when I go to bed I hope that in the morning I will be pain free.  Each day when I wake up and cannot walk without the SCS being turned on a level of emotional exhaustion hits.  It is physically and emotionally exhausting to be in a constant state of pain. 

Today, I still have my SCS turned on.  I am still limping.  In the shower this morning I had to hold my breath and grunt while washing my leg.  The sensitivity of RSD makes even the softness fabric of a baby's wash clothe painful.  Today is a better pain day than those first few days of the flair.  I know that soon this flair will end and I will be able to have some days of being able to catch up around the house.  I also know that another flair will come and can come at any given time.  That is life with RSD.  I am thankful that my SCS can lessen my pain and helps extended the amount of days in between flairs.  Life goes on despite being in pain and I have to learn how to go on too.  Still, even someone as optimistic  as I am will struggle with the isolation of a flair.  That is the reason why we need to Advocate for Awareness.