I had no idea that my life was about to change that day.
Living with a chronic disease/illness/pain….whatever label it might have, is something I never could have understood before. Today I am here because I am going to share what it is like. Let me make myself very clear in saying I do not share to get your sympathy. But, I am sharing because someone you know is going through this daily. Someone you love is fighting a battle they cannot seem to find the words to explain. For whatever reason, I was given the courage to always share my story. I believe there is power in one’s story so today I share because quite possibly out there right now is someone typing in the Google search bar to find a story. That was me, and is still me, as I search to find someone out there fighting a similar battle. The reality is that using our voice is scary but if I help one single person, the fear is always worth getting over.
Living with this pain every day caused by Complex Regional Pain Syndrome (CRPS) is the hardest thing I have ever done. It has beaten me down in more ways than I even realize yet.
I struggle almost daily with just feeling empty. I’m not sure if that is because part of me is morning the life I lost, the drugs I’m on, or just the simple fact that every thing I do in a day is so difficult. Mental fog is something that feels like my mind is like my achy body and is trying to trudge through mud. I walk around in a fog.
One of the hardest things is that I often feel like I am lost; like I am not sure who this body I am living in belongs to but I would really like to move out of it. Gone is the mom who went to work every day dressed nice with cute jewelry to accent her clothing, her make-up was spot on & her hair looked great. This was all after a 4:30 a.m. workout. Now, when I see my reflection in the mirror I get tears in my eyes. This woman looks so worn down, like no amount of cover-up can fill in her black undereye circles. It was so difficult for this woman to take a shower this morning that she barely had the energy to put a tiny bit of makeup on her face leaving zero energy to care about her hair which is left wet. Her clothing? Black leggings as they are the only pants, besides sweats, she can get on over her foot. She is sporting some kind of a baggy sweatshirt with her right Bearpaw boot on & her left foot is wearing the only socks she can handle which is a tall white one. Looking in the mirror at the eyes of this woman you can see the pain she is wearing. She does not bother putting on too much eye makeup, it’s a guarantee she will cry at some point in time. Perhaps from the pain & perhaps from the emotional state she is in. Crying is something done very often in her world.
The mom who never had to ask for help can no longer run her girls around. She can no longer handle those days where she leaves the house at 7:00 a.m. & does not return until 9:00 p.m. She gets in the door & immediately crashes to the couch with her foot up & delegates everyone’s chores or nighttime to-do lists from there until she crawls up the steps to bed.
This weekend I had to pull my car over to let myself just cry. Ten weeks later I am feeling the frustration of having to rely on everyone for everything. I was ready to leave my home on Saturday morning when I headed to the steps & remembered that I cannot even leave my house without help down the steps with my knee walker. Today it happened again when I was going to run home to pack an overnight bag for my girls when it hit me I could not do that. No one would be home to carry up my knee walker & I cannot carry a bunch of stuff on crutches. You begin to feel helpless, worthless because you cannot do the things you feel you should be doing.
Some days I need help in the shower, some days I need help getting dressed. Some days I need help getting out of bed after another night that my pain kept me awake, crying & screaming into my pillow.
I have watched my body change so much. Today we will not touch on the amount of weight I have gained, which I am told is normal. Instead let’s talk about the fact my left leg has lost so much muscle that my sock will no longer stay up & my leggings that were once tight are now loose. I watch my skin change colors daily & the swelling grow by the hour. Not to mention the lovely incision scars to wear for life.
The side effects of the prescription drugs I am on just add to the rest of the fun. If my pain is actually dropped down to a 5 (pretty much the lowest it ever gets but is incredibly rare) then chances are good I am feeling very nauseous from my drugs. What was it like to feel good? I cannot even remember anymore. My drugs have a million other side effects that I battle daily.
When I crawl into bed at the end of the night, I am grateful I had the strength to battle through the challenges & the pain that the day brought. I am always so thankful for my family who helped me get through it all & love me beyond measure. But, even these positive thoughts & the gratitude I feel, some nights it just does not stop the tears of frustration or the tears of depression from falling into my pillow.
Someone you know is fighting a similar battle. Be kind & patient. Be understanding when we have to cancel plans at the last minute. Be helpful when they are down. Love them beyond measure. Don’t look at them & only see pain; inside some place is a person fighting so hard to come back out. Be their wall when they cannot stand, dry their tears when they need to let them fall. Don’t fill them with false hopes that some day everything will be okay, don’t tell them you hope they recover from something that has no cure. Just let them know you are there for them, be the ear they need when they need to vent, be the hug they need to know they are not alone.
More to come. I am off to bed with a heart full of gratitude that I made it through another day with my pain jumping between a 7-9 on the scale out of 10. It took everything I had to push through it and as always, I will go to bed hopeful that maybe tomorrow will be a little bit better.
Until Next Time~
Speak Your Mind