It’s been a rough few months. There, I said it.
I have been cycling in out of migraines. My gastroparesis is flaring, and I haven’t had solid food since June. My pain is out of control. My joints have decided to do their own thing. I have terrible balance issues. My vision goes in and out. My muscles are in constant spasms. It’s a mission to brush my hair, but I can’t bring myself to cut it. I can’t shower without a chair to sit on because my balance is so bad. They are evaluating me for new diagnoses — again. And now my depression has reared its ugly head.
So it hasn’t exactly been a walk in a park.
People are always commenting on how strong I am and how positive I am. I can usually plaster a smile on my face and say “I’m OK” when people ask me how I’m doing. Lately, it’s been a lot harder to do that.
I don’t feel strong. I don’t feel positive. I feel weak and feeble. I feel like my body and my brain are failing me.
Those closest to me see my day-to-day struggle. But to the rest of the world, their lives go on, with or without me. Their day to day is different than mine, and I admit I’m jealous. I want to be out there in the world with everyone else. Instead, I’m in bed and doing my “job” of going to my doctors’ appointments and physical therapy, depending on how I’m feeling.
I’ve been seeing my current primary care physician for at least a year and a half. The other day, I went in for my monthly follow-up. She listened to all of the symptoms I was having, and after I was done, she looked at me with pity on her face and asked, “What can I do for you?”
With a small sigh, I replied, “Nothing. There’s nothing you can do.”
And that’s the reality of it.
When people ask me, “What can I do for you?” the answer is nothing. There is no magic pill. There is no cure. There is no end in sight. There is just chronic, compounding mental and chronic illness. No amount of medication or exercise or supplements or daith piercings or yoga in Hawaii will fix me.
This is me. This is my life.
I am a mentally ill, chronically ill spoonie. I have zero spoons these days. I do my best to get by, hour by hour, until I can take my pain medication and muscle relaxers again. I do my best to keep my moods and anxiety under control. I do my best to get out of bed, even if it’s just two feet away to my desk. Even that is too much for me sometimes. I live on ice packs and heating pads. Not only are the physical ailments overwhelming, but this major depressive episode, the first in six years, is not helping.
Even though there is nothing you can do for me, please don’t stop asking me “What can I do for you?” Just the fact that you are asking, offering your help, lets me know that I have people who care.
While you’re at it, it would be great if you could check in with me once in a while. I admit I have been overwhelmingly pessimistic lately, and you are probably sick of hearing about my sickness. I am sick of talking about it. When you reach out to me with a call or a simple text just to say hi, it can often make my day. I have become increasingly isolated. I have lost a lot of friends on this journey of mine. I am no longer invited to outings or social gatherings. If I am invited, I usually end up having to bail at the last minute. I apologize profusely every time I can’t make it to an event. One of the kindest things a friend said to me, which has stuck with me, is “I know you would be here if you could.”
And that’s really what it comes down to. I would be there if I could. I would be working if I could. I would be like any other twentysomething in 2016 if I could. If I could, I would do everything I wanted and needed to and have no second thoughts about what it’s going to cost me.
But that’s not the life I lead.
It’s overwhelming — the feeling of wanting to give up. I keep making grateful lists and counting all my blessings on a regular basis. I make sure everyone knows how much I love and appreciate them. I say my prayers, especially The Serenity Prayer.
I’m doing my best yet I feel like my best is not good enough. I am constantly beating myself up for “not being good enough,” which I know doesn’t help anything. It just makes it worse. That’s something I put on myself, though. Everyone outside of me, myself and my brain can see how hard I’m fighting and how I’m not giving up. But inside my brain, it’s a never-ending battle of give up or ride the wave.
I am usually brimming with positivity and can put a great spin on all the opportunities my life has given to me since getting sick. But tonight, it’s hard to be positive. It’s hard to put that smile on my face and tell everyone “I’m OK.”
It’s hard to ignore the aching in all of my joints and my back. I’m starving, and yet I can’t eat. I want to cry, but the tears won’t come. I want to sleep until I’m not exhausted, but no matter how much sleep I get at night, I wake up feeling the overwhelming exhaustion every morning. I cry at the drop of a hat. I just want to hide in my room.
And yet, despite all of those odds against me, I will not give up. I may have days where I give in, but I will never give up.
Giving in and giving up are two different things. I will never give up again. I gave up once, and it nearly cost me my life. I will give in though — to the pain, to the depression, to the anxiety, to the migraines and the GI issues.
I will concede defeat at the moment. I can’t accept my disabilities and their limitations, at least not right now. Even though I thought I had accepted it, somehow I’m cycling through the stages of grief again. It’s been over two years with my chronic illness and eight years with my mental illness, and I still long for the young, vibrant woman I once was.
I refuse to accept that my life will be a life spent in bed. I refuse to accept defeat for the rest of my life.
But tonight, I give in. That doesn’t mean I won’t pick up my shield and sword and fight like the warrior I know I am deep down. It just means that tonight, right now, I concede that I am defeated by life at the moment.
I always remember the quotes about how the darkness allows us to appreciate the light — that the stars shine the brightest when it’s the darkest.
I will get there. Maybe not today. Maybe not tomorrow or even next week. But someday, hopefully sooner than later, my season will change. It might not be until spring when the weather is kinder to my body, but it will change.
Each day I make a choice. I choose to live, to fight. I have not given up. But I am tired. I want it to be easier. I want to not have to choose to give in, to accept defeat.
My ideas about my life and my body’s ideas about my life are at odds right now. But through my journey, I’ve learned that it always gets better. We may not know when. We may not notice when it starts to get better. One day you will wake up and you will realize the good days are back. The season has changed.
For now, I appreciate the good days I have. They are few and far between, but they are what keep me from giving up. I appreciate my partner; I appreciate my family and friends. I appreciate that I have been given a gift — the ability to reach people with my words.
The good days keep me going: The days where I laugh, the days where I dance and sing along to the music, the days where I am enough of a person to function.
These are trying times for all of us. We all have a battle we are fighting, a war that is raging inside us (or around us).
Tonight, right now in this moment, I give in. I am waving my white flag, laying down my shield and my sword for the moment.
Even if I have laid down my shield and sword for the night, there is always tomorrow. And if not tomorrow, there is the next day. I have hope. I have faith. I have love in my life. With those three things, I am capable of being the warrior princess I know I am. I know I am strong, and my survival rate for bad days so far is 100 percent. If you are reading this, then so is yours.
The good days are coming. The season will change. They always do. I (and you) just need to hang in there until they come.
Stay Mighty, Warriors.
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