Here’s the
short version: I used to try and keep it all hidden, but at times that’s just not possible everyday anymore because there are times when I need a walker or wheelchair, or I can’t drive, or work, or cook, or clean, or do anything but lay in bed and sometimes cry. Shoot I can’t even dress the way I used to, to hide it better. God I miss SHOES!!! They so make an outfit! Lol … laughing but I’s true!
When I do tell someone I just say, it’s a rare neurological disease… ya know.. kind of like MS, or Parkinson’s (tremors). There’s a short circuit in my brain. If I say that, they tend to relate, even though there’s so much more to it than that, and I know that’s not a very accurate description. It’s usually a nod and smile kind of moment. But I typically don’t care anymore that they (strangers) don’t understand. Too hard and exhausting to explain. I have no 30 sec elevator pitch that works and that is accurate.
The
longer version:
(
aren’t you sorry you asked me to respond? lol)
I don’t know that I keep mine hidden so much, but rather no one can always see
ALL the pain and mobility challenges. I tend to vocalize mine probably more than I should. It’s happening and I don’t know how to keep my mouth shut when it’s so intense. When it’s not at a crazy level, I don’t bother mentioning the pain because it’s there and it’s not leaving and I think that it’s like a gnat that I am just TRYING to ignore.
When pain levels surge this is when I become impatient, and short, and assertive (some have another name for that… starts with a B) and sometimes downright angry and/or depressed. My loved ones can’t seem to remember that I am trying to push through, or lay down and get through the pain, or they remember but will just never really understand. Although I will say this, when it’s really bad and I am struggling to walk from here to wherever, which can be as short a walk as my bed to my bathroom with a walker, tremmoring like crazy, crying, trying so hard to remain independent, they are wonderful.
They can see it.
I have been in business for myself as a video producer for one year longer than I have had this disease. My first year with CRPS was my hardest. I had back surgery and woke up with this damn thing. I was paralyzed for a week from the waist down and had to learn to walk again along with my new CRPS/RSD leg and foot. I was 10 years younger than I am now, and the disease has changed, progressed, spread, and become much more disabling. I think that made a difference (being younger) from how I am able handle my life and disease (public face) now. After I regained some, a fraction of my former self, I drowned myself in my business, and like you I have always been a hard working productive person and didn’t want to be perceived otherwise by anyone in my work environment.
I learned to fake it very well. I would push and push and push and privately cry myself to sleep.
Here I am 10 years later and I am winding down my business and changing my life. I have had to come to terms (or at least try) with the fact that I am no longer able to handle the demands of my video production business AND CRPS. It’s a HIGH STRESS, crazy amount of working hours a week, fast paced profession. Hum… something I used to love about it.
In 2009 I came off my last on location shoot (15 hours), the whole time on location with my “public face”, and said to my husband on the way home, that’s it, I’m done. I physically can’t do this anymore.
Since then I tried for a few years to continue long hours, fast paced, yadda, yadda from my desk. Then in 2011 I knew it was over. Or at least this chapter. I work with some pretty complicated technology, and some of the worlds biggest brands and their executives. You must be on top of your game to succeed in this industry. The disease has done a number on my mind (concentration, memory, focus, etc.) Since then (2011) I have been winding down my commitments. I have tried to look at the upswing of having time to actually focus on myself, bring down stress and consequently pain volumes, and MAYBE do a project that I actually want to work on. Not for money, but for self-satisfaction. If I have my way, there is a documentary in my future. I REALLY want to do one on CRPS… for so many reasons. We shall see. I have also thought of taking up photography. I am thinking of selling one of my video cameras for a nice still or DLSR (one that does both video and still images). I have so much desire, will and determination, and
this disease does nothing but get in my way. I am trying so hard to find BALANCE. Gosh it’s tough! Seems like a four letter word at times.
I am lucky that I do have a very close girlfriend that does ask and does care how I am doing. Although we see each other much less. For the most part, I’m just not up to it. I also have some family that try to understand and have done research and have offered anything they can. But, for instance, my eldest son, 24 y/o NEVER ask me, how you doing mom, anything I can help with? I don’t know if he’s in denial, or if it’s a huge character flaw, or what. I know he loves me, but it hurts when he doesn’t at least inquire from time to time. And here’s where I am super lucky/blessed… my husband. I do not want to ever have to walk this journey without him. He’s not perfect, we’re not perfect, but for the most part he gets it more than anyone else in my life.
It is soooooooooooooo frustrating that you can’t just say I have CRPS or RSD and instantly people know exactly what you’re talking about. Even more so in the medical community.
So I guess that’s it. I guess you could say that I have less and less of a public face and that I publically and privately suffer, but NEVER am I looking for sympathy; quite the contrary. I work hard to remain independent and I work hard at acceptance. Acceptance is really hard for me.