What I’m Not Saying

I laid there on the bathroom floor in a pile of sweat, a pond of tears, the room was spinning and my stomach so nauseous and all I could wonder was how long this would last. I screamed out for it to just end.

This was me in a detox. It lasted days, but this was that moment where I almost gave in & said “forget it” and took another pill. I had been instructed to stop taking it cold turkey for a few days to see if that was causing the hives that were covering my body. It was an anti-depressant prescribed in hopes that it would work by helping to reduce some of the pain signals to my brain.

I stayed off the drug, not because it made a difference on my hives, but because I found my mood to slightly improve. It was bringing me down, even more than living with CRPS was.

This is not a moment I share, laying on the bathroom floor already feeling addicted to a pill. Like anyone with an illness that is supposedly “invisible” we hide so much.

Yes, I share some parts because I believe in the power of a story but also because it helps me. But, there is so much that I am not saying; so much that is hidden. That is how we live our life with these illnesses.

We do not say things as we already feel like a burden to those that love us; we stay quiet because we do not always want to be the downer in the room. We stay hush because of the embarrassment, we stay hidden in the dark because some things are just difficult to share.

What am I not sharing?

I am not telling you about the number of nights I have sat in my bathroom in the middle of the night crying hysterically just begging the pain to stop. I am not telling you that I wake up in the middle of the night drenched in sweat as my body temperature is something out of control these days. I am not telling you about the times I have thrown things across my room in a fit of anger. I am not telling you about the nights I have gotten sick due to the pain. I am not telling you about the incredibly dark hole I have buried myself in not wanting to ever come out. I am not sharing the hives that are covering me from head to toe daily.

I am not sharing about the horrible side effects I experience from my prescription drugs. The bloody nose I wake up dealing with every morning. The dizziness. The total mental fog or the horrible memory I suddenly have. The sinus/cold symptoms I have had for months that never go away. The constant sick to my stomach feeling that just never leaves.

I am not sharing about the reflux I suddenly have and whether that is a symptom of my CRPS or the prescription drugs we cannot say. I’m not telling you about how my insides are just a complete mess….like total. You know, the totally unglamorous crap. Everything from my head to my bowels is not normal. Again, these symptoms could be from CRPS or my meds. I mean, really…this is the stuff I won’t share with anyone. In fact, sometimes I feel too awkward to discuss it with my doctors.

I am not sharing the pain it takes to walk “normal.” I am only sharing the victory of being on my feet! Learning to walk without showing pain is a massive victory.

I am not sharing how much I will fight daily to power through cleaning the kitchen or making meals or doing the laundry because my heart hurts when I do not power through. You choose between the physical pain of doing too much & the emotional pain of feeling as if you are never doing enough. I hide the strength of my pain so my daughters do not see it, so they do not feel guilty about needing me.

I am really trying to hide the truth of my weight. Between being off my feet for so long combined with a prescription drug that causes rapid weight gain the number of pounds overweight I am is something I am not saying. I mean, who in the heck ever wants to admit that here she is once again back close to her highest weight ever with 50 pounds to lose. No one…because that is something with a stigma attached to it. Since November I have gained over 30 pounds. I look in the mirror and want to cry. I want to throw something at the mirror daily to break it. That I’m not saying to you simply because I do not want to draw attention to it. I am not saying it because then I will have to face the woman in the mirror, the overweight one.

There is so much we do not say with these “invisible illnesses.” There is so much we do not want to admit because of the embarrassment or the stigma associated with it or maybe even the fact that your worth seems to be attached to what you can do or how “super mom” you appear to others. If we just stay quiet and smile and reply with our normal “fine” answers when others ask how we are doing, then we do not have to share our truth.

Because even when you think we are sharing all about our journey, in fact we are hiding the majority of it. We hide for those we love, we hide to protect ourselves, and we hide so we can pretend that we are completely fine sometimes.

Personally, after talking with some friends who suffer not from CRPS, but other “invisible illnesses” recently about this, I have decided to come here today and share with you what I’m not saying on a daily basis so that others, so many others, know that they are not alone. So that maybe I can help them fight through the fear of sharing. So that others know I am here to be their person that they can share it all with and who will listen & understand but remind them to fight that damn monster daily to keep living a life with positivity.

So, what you will continue to hear me say, is that I live life with a continuous yet spontaneous pain. I live life with what has been termed the “suicide disease.” I live life with what medical professionals would like to refer to as a “useless limb.”

But, this little space on the internet will show you the true ups and downs of fighting back, of fighting to live my life in the best way I can in spite of the invisible monster that tries to take over my body; I have decided to not let the monster take me down a dark road & that I will choose the right path for me.

Until Next Time~