It is a gorgeous night. The wind is blowing, lightning dots the sky ahead of the coming storm, and I can smell rain on the breeze. This is my favorite time, and I intend on savoring it.
Still, even with all of this beauty around me, I find myself troubled. I find myself constantly plagued by guilt (I blame my Catholic upbringing). There are these nagging thoughts in the back of my mind. "I should be working." "I should be cleaning." "I should have gotten more done on Friday." "I should have gone to the party." "I should have been more productive." All negative thoughts. The more I think about and analyze this, the more troubled I am about that fact. Never do I find myself thinking, "I should relax." "I should take a bath." "I should go to bed early." "I should rest."
"I should take care of myself."
On Friday, I had plans to attend a party. It was my friend's birthday and I was finally going to get to meet some new people that I had heard a ton about. On Wednesday, I wasn't feeling great. My whole body felt like lead. Every motion took an enormous amount of effort. I couldn't pinpoint why it was happening. Maybe it was allergies. Maybe I was getting sick. I have been adhering strictly to my diet, so I wasn't convinced that was the problem, but anything is possible (I did eat pasta 2 weeks ago). On Wednesday night, I didn't fall asleep until 4am. Getting that little sleep almost paralyzes me. Thursday was a little bit better--I still wasn't feeling great, but I felt like I was on the right track. Friday finally came, and I was still feeling crappy. I told my friends I would be there as planned. I tried, unsuccessfully, to get my work done, and found myself getting more and more anxious as the day progressed.
As I went through the mental list of what needed to happen for me to get to the party on time, I was completely overwhelmed. I needed to leave work by 2:30 so I could go to the store to get food for dinner and get home to take a nap. Then I had to shower and get ready. Then, I had to make myself dinner (my friends were nice enough to inform me that they were having pizza and I might want to eat beforehand). All of this needed to happen by 7pm so that I could get to the party in time. At that point it was already 3:30, so I knew I wasn't going to get the sleep I needed. I completely broke down. I knew what I had to do, and I hated it.
I texted my friends and explained that I was exhausted and wouldn't be able to make it to the party because I was simply too tired. I apologized profusely and said that I felt like a bad friend. And then I cried. At work. Which I hate doing. I was so frustrated, angry and overcome with gut-wrenching sadness. I called my mom to vent, and she was amazing. She let me get it all out, and reassured me that they would understand. Soon after, I got texts from both of them saying they weren't mad, and urging me to take care of myself. I cried some more.
I plopped myself down in my coworker's cubicle, shut the door and sobbed. I explained what had happened and she said the same kind words that the others had. "Don't be upset, they will understand, you need to take care of yourself, if it were me I would want you to stay home." Still, I couldn't shake the anger and disappointment in myself for not being able to do this one simple thing. I felt so selfish.
I managed to stop crying long enough to walk out to my car with one of my best friends who works in the building next to mine. I told her why I was upset and she comforted me as well. She said something as we were parting ways that helped me understand why I was so mad at myself. She said, "It's hard for me to see because you're still walking around, but I know you're going to go home and crash." A few pieces fell into place.
Just because I look fine on the outside, doesn't mean that I am. In fact, I'm never okay. "How are you?" is such a common question, and people never stop to think about what they are actually asking. I'm forced to reply, "I'm alright," when I'm not. All the question serves to do is remind me of how horrible I feel all the time, and no one wants that answer.
I needed to stop at the store to get food, but I couldn't stop crying long enough to do so, and I just went home. My sister welcomed me, as I knew she would, and offered to help me in any way she could. We scrounged through the pantry and adapted a recipe so that my cooking would be minimal. I barely finished dinner. I fell asleep at 8:30 and didn't wake up for 12 hours.
The next day, I knew I had made the right decision, but I still felt guilty. To try to get rid of that guilt, I went to work and finished things I had been unable to complete during the week due to lack of energy and focus. It helped with the guilt, but I overdid it, as usual, and expended too much of the precious energy I had restored the night before. I emailed my chronic illness/primal blueprint friend and explained to her what was going on. What she wrote in her email back to me put the final pieces into place. I'll paraphrase.
Ultimately, we (those with a chronic illness) are ruled by spoons. The whole point of this diet and my energy management practices is to try to get more spoons. She explained that getting more spoons isn't what changed her life. What changed her life was fully accepting her limitations. Getting to a place where she felt good about saying no to things when she knew she couldn't do them, and instead taking care of herself. My therapist has touched on this with me in the past and she explains it as switching from thinking of my actions as selfishness and starting to view them as self-preservation.
The other thing my friend wrote that really hit home was that she could see that I was starting to grieve the loss of the person I used to be. I want so much to be "normal" and because of that, I push myself and try to behave the same way I did before my diagnosis. I don't listen to my body. I feel broken and act whole.
The trouble is that so many of us suffering in this way don't appear sick on the outside. We hide how terrible we feel underneath a meticulously cultivated facade. We have to make a conscious effort to do things that most people take for granted, like showering or picking up our socks or brushing our hair. Cooking and cleaning and laundry become mountainous tasks. I have known this for five years, but am just now coming to terms with it emotionally.
My friend is right. This grief is very real, and I have no idea how long it will take me to work through it. I don't know who I will be in the future, or if I will ever feel whole again. What I am absolutely sure of is this: I would NEVER have made it this far without the amazing support system I have right now. There are people around me constantly that love me and accept me as I am--something I am not yet capable of. I hope that you all are as lucky as I am to have friends and family like mine. Friends who say, "Take care of yourself! I love you!" instead of being angry at you for being 'selfish' when all you are trying to do is exercise a little self-preservation. Hold on to these people, and show your gratitude.
The storm rages. Inside and out.
Until next time, Check Your Neck.