So Much Loss

I am fairly new to this disease. CRPS has taken what was a very active, super busy, multi tasking kind of life and flipped it upside down. These days, approximately 80% of my life is being confined to my bed.

 

 

Two years ago I was running 5K’s with my hubby, working a very physical job 40-60 hours a week and raising three teenagers full-time. These days, I’m a happy camper if I can make it through a night out with friends involving hanging out at our house or theirs, playing cards for a bit, or meeting up for dinner. I’m usually exhausted the entire next day….you know, cuz isn’t everyone tore up after a few hours of sitting and talking?! Ugh!

 

 

 

The life adjustment is not a fun ride. I have not been able to work for about 10 months now. It’s really fun when I get the ‘must be nice not to have to work’ or ‘must be nice being able to stay home all day doing nothing’ sorts of comments. Uhhh, well, it might be nice to not have to work and be home all day doing whatever I wanted to if I could actually AFFORD to NOT work and was able to actually DO anything I wanted whenever I wanted. However, that is not the case. It’s far from glamorous, trust me. Think back to a time you were in so much pain you would have given your left arm if only you could crawl out of your own body and run away. Think of a time you had the flu or some sickness that took all your energy from you; when you couldn’t even hardly walk from your bed to the bathroom without feeling completely exhausted. Was that fun? Did you enjoy yourself? Were you having a good ole time? Well, newsflash……neither am I.

The topper of good times has to be all the people in my life Ithought were my friends or family that loved me unconditionally and would never turn their back on me, who now give me those looks of disbelief or better yet, talk about me behind my back as they either smile to my face or have slowly cut me out of their lives. Nothing says love like those that turn their backs on you for something you have no control over and would give your left arm to be free of if the opportunity presented itself. Though all of those things that have been taken or have changed is bad enough…….there’s more. The worst part is the lives this disease has taken.

I joined a support groups so I could talk, listen, give and get advise, understanding, compassion, and true, no-strings-attached support. I have a small handful of people in my life that I completely trust 100%. People who I know understand what I am going through. People who don’t whisper behind my back with judgements and doubt the facts they haven’t bothered to ask me about. People who get that my smile is the facade, not the pain. People who treat me like a human being with respect and love, not spreading lies and rumors. I am grateful to have a couple of people who I can be completely honest with and know that they get what I am dealing with or at least have the balls to ask questions when they don’t understand something. A larger set of those people come from my support group. They are the ones that know beyond knowing because they are going through the same thing I am or worse. Sadly, this year alone, we have lost 3 people. Three lives have been cut short because of this horrible, misunderstood, and vicious disease. What CRPS takes more than anything is our lives….bit by bit.

As if it weren’t bad enough to have to deal with one of the most painful diseases out there, why shouldn’t it take away the smiles, and laughter and hope. Suicide takes the lives of nearly 40,000 Americans every year! Some are diagnosed clinical depression, but a large majority of those are people stricken with chronic illness or chronic pain. Our group is extremely sensitive when a fellow friend passes away. A lot of the time specifics aren’t exploited and comments aren’t running wild. We respect each other and each others family members. This disease is hard enough without us turning into the very people we flocked to this group to avoid. I know we aren’t e only support group, there are many, and that makes me very happy. Finding my group made me feel like I wasn’t alone, which is how I feel most of the time. No matter how many people surround us, we are alone in the pain and the suffering and the shadows of what our lives used to be.

It breaks my heart that these people felt like their only option was to leave this life. Yet, I understand it. I get it. I have struggled with those very thoughts more times that I would like to admit. There is nothing worse than looking at the people you support no matter what and have them turn their back on you, or worse, smile as if they understand while you know they are just cutting you down the moment your ear is turned. We have physicians who don’t believe us, or who have no clue what is going on, or think we are drug seekers. We have spouses, family and/or friends who…….don’t believe us, think we are exaggerating, think we are being lazy, make up stories about us, talk behind our backs, tell lies, accuse us of taking too many medications or say we self medicate, smile to our faces while they slowly delete us from Facebook and stop inviting us over or out…….you name it……it happens. So maybe, just once, people could stop, and listen and understand and believe and have some compassion and just once……..give those of us suffering with something most of you can only imagine in your worst nightmares  just a sliver of hope.

Yes, it’s much more entertaining to share tweets about celebs and Facebook posts of funny videos and sharing pages of people you don’t even know selling shit you don’t even buy. But you might just do a little for your cosmic karma if you do something unselfish and see past yourself just once. That just might be the one time you save someones life. Be a voice. Be an advocate!

My heart goes out to their loved ones left behind, feeling powerless and lost. My heart goes out to those that have lost their lives; for those that thought checking out was the only way to find peace. I know the pain. I know your wish for understanding, compassion, a cure or at the very least an effective treatment. Don’t give up. Please find a support group if you have nothing else. We may not have all the answers, but I guarantee you that you will NOT be alone!

If you can, please go to www.powerofpain.org/donate and make a donation to the research of RSD/ CRPS. When someone in your life is going through something you don’t know about or understand, do them a favor and ask and do some research on your own, and above all……don’t forget  they are the same person you have always known and loved, and even if they have a smile on their face, they might need you now more than ever. You might just save their life!