There were many ups and downs this week. The past three weeks away from work have been spent in hours of solitude, writing, doing some fun things, working on my mental health and having honest conversations with myself.
My rage has been turning me into a very negative person. I really heard it this week. There are trigger phrases that multiple people have said which cause me to viscerally react.
The face of chronic pain will be smiling, laughing and joking. That’s why I bristle when someone says, “You look fine.” What is chronic pain supposed to look like? Do people really think I’ll let them see me hobbling and crying? I will always “look fine” because I mask it from you.
- What you don’t see and will never see is how I barely sleep.
- What you don’t see is I need a cane to get out of bed most mornings.
- What you don’t see is the nausea that hits in the morning and afternoon.
- What you don’t see are the tears as I get in and out of the shower, praying I don’t fall.
I can’t stop being me and enjoying myself. How is that fair? I keep trying to tame myself because being ME takes a lot of energy. It’s strange that I wear myself out just acting natural.
I’ve always been a proponent of therapy. This isn’t new for me. I’ve suffered from depression and anxiety since I was in high school. The difficult part is finding the right therapist. The fact is a regular therapist won’t work. I need one specialized in chronic illness, who is trained to handle and recognize those added stressors.
My therapist at Emory Palliative Care told me I am coping well. I guess I feel like I should be doing more. Is that the over-achiever in me?
Here’s what I’ve been doing:
- Made the first step in putting my health FIRST.
- Made a list of things I want to do that feed my soul creatively.
- Started journaling and writing more frequently.
- Unplugging from social media and spending time wrapped in silence.
- Going to some survivorship programs.
- Having honest conversations with myself and asking what I WANT.
- Trying to figure out my limitations.
I’ve also had people asking me if I’m “enjoying this rest.” This time away isn’t a vacation. I’m still highly stressed because my short-term disability hasn’t been approved yet. These constant hurdles to try and take care of myself is causing additional stress. It actually exacerbates my pain, which is not good. I will only rest once I know my bills will be paid.
I bring up being single a lot because it affects so much of my care.
I realized last evening that my biggest fear in my adult life already happened — diagnosed with cancer while single and having to work. The pressure to keep a roof over my head, mounting medical bills, regular bills, upcoming surgery, doctor appointments and medication truly wears on me. I really thought by this age I would’ve met “the one” and have a partner to help ease the pressure.
Getting cancer took away precious time that I’ll never get back. That’s a tough pill to swallow. I’ve literally lost three years of my life to intense stress and fighting to stay alive.
I constantly hear how “stress can kill,” yet no one has solutions of how to keep it low when you’re single.
The toughest challenge I have now is coping and living with chemo-induced fibromyalgia. None of my doctors prepared me for the possibility of chronic pain. That’s why I’m in a rage. I kept going to different doctors and specialists until one finally heard me and gave me that diagnosis.
I’m devastated. I need more purpose to get me out of bed each day. I need to find a way to turn my advocacy, blogging and speaking into a career.
I’ve heard from many warriors to “not let cancer define you.” Well, it HAS defined me. I am no longer who I was physically. It has taken so much from me. It HAS changed me.
I may laugh a lot on the surface, but if you look closely, you’ll see the pain and grief. I know that’s why I toggle between rage and negativity. I’ve never dealt with this kind of pain and grief on a daily basis.
My soul is so weary. I long for the day when everything works out and I CAN truly rest and rejuvenate. I want to be able to float instead of struggling to keep my head above water. I deserve to feel free and supported.
So, this isn’t a dress rehearsal. This is real life. I’m giving the performance of a lifetime.
Until next time,
This post originally appeared on Life on the Cancer Train. It is republished with permission.