Supporting your support group.

An odd thought but true.  As much as we need to rely on our support system a chronic pain person has to also support their support system.  It is easy to become self obsessed when you are living with a lifetime of pain.  Understanding that those around you are affected by this is a key aspect in having a wonderful support system.  As much as they will never understand the amount of pain you are living with you can never understand how much they miss the person you used to be.  They are just as affected by your pain as you are.  It is easy to get caught up in the roller coaster of your new normal.  Your people are on this roller coaster with you, you just happen to be the one in the front seat. 

I think accepting this concept can be hard for many with chronic pain because the unfortunate facts are we loose friends and family as a result of living with RSD.  Our first year of diagnosis is hard because many disbelieve the amount of pain and the diagnosis.  That first year is one of the hardest and many of us fall into a state of depression from the loss of our old life.  Once we start fighting back we also need to thank those who stuck by us.  Then when we become a little more stable in our new normals we have to understand what those around us have lost and help support them.  This isn't always easy because we still live in a type of constant pain. 

I have realized that while my husband is always so strong and supportive there are times where he simply misses his wife.  Gabriel is a helpful kid, always willing to help out, but he is a kid.  I have wonderful parents but it breaks their heart that they cannot give their daughter a strong hug.  My sister shouldered my tears in those early years and swallowed back her own.  I have a strong best friend who listens to all my weaknesses.  My in-laws have been so supportive and understanding in learning not just about me but the way I prefer to deal with my RSD.  I have also found a wonderful on-line support group of other RSD'ers and we support each other in knowledge that we are all in different phases of living with the same disease. 

Showing thanks is not the same as supporting those in your life who help you fight this pain.  Supporting them means knowing when you need to dial it back about your own pain and listen to them about their lives.  I try to remember this but every know and then someone says something or does something that makes me realize that I need to step back and take them into consideration. 

On Sunday I had one of those moments.  We went to my parents church to witness my nephews First Holy Communion.  It was a day that I needed to use my cane to walk but as a Mom I keep some toys in my purse and because of my back pain I carry a little pillow to place at my back when I sit.  Gabe my wonderful helper carried the pillow into church for me so I could be better balanced.  When church was over I asked him to carry my pillow again and he replied "No, I want to carry your cane."  I looked at him and said "Mommy needs her cane to help her walk, you know that."  He gave me a stubborn look and said "No you don't. You have two healthy legs.  You don't need to use a cane to walk."  I grabbed him and hugged him.  I told him "Baby, Mommy wishes that were true too."  Really, there is nothing to say.  He isn't in denial.  There are simply days where my pain is too much for him to emotionally handle.  He wants what we all want.  For me to go into remission.  He is just lucky enough to be a kid who can actually say that wish outloud. 

Supporting my support group means that at times I have to let their emotions take center stage.  I have to give them this room since they are so wonderfully supportive of me.  I will never be rid of this disease but at least I have a wonderful group of people who help me fight for each day. 

Today is my first pain free day after a 10 day flair.  I cannot wait till Gabriel gets home from school so I can show him that Mommy does not need her cane today!  I already showed off my walking ability to Leo.  They helped me get through this past flair now it is my turn to support them in their needs.  That is how relationships work, right?  Give and take?  It can seem that when you are living with something like RSD you need to take more than you can give, but if you change the scope in how you can give back you will see that your relationships can be 50/50.