Friday, July 13, 2018

Guilt. Pain. Depression.

I sit on my back porch staring at the flower across the yard.
I hear the birds sing in the distance.
I hear my service dog's nails hit the pavement.
I feel the heat of the intense Texas sun on my body, while tears fall down my neck.

I feel numb in this world.
I feel lonely and unfulfilled.
I barely feel alive.

Why do I feel this way?

I fill the day by playing a few games on my phone throughout the day. World Chef and Best Fiends, if you must know. I scold myself that this is the reason I can't get anything done. I vow to wake up the next day with a plan, a list, with focus. I am so behind. I have to get some things done. So I document all the tasks that need my attention, the bills that must be paid, the items that can no longer go unattended. I go to sleep with some hope that tomorrow will be better.

Then, it's not. It is the same as it was yesterday and the day before that, and the week before that.

That's the way it is with depression. Our bodies are suspended in time -- part of today but not fully --while the world continues to race past us with each second that goes by. We ourselves don't move but we constantly feel the wind of being left behind.

I can't do anything.

I have no motivation -- for even fun things, for important things, for myself, for my family.

Even with a list in hand, I have no 'get up and go.' I reprimand myself to get up out of the bed in the morning, and when I am finally out of bed, I long to go back 'home.' That's all I want to do... sleep. Even when I wake from a three hour nap, the relief I feel is brief. 

My mind caves under the pressure of consciousness. I didn't cook dinner. Again. I didn't go to the grocery store, and I didn't order groceries to be delivered. Again. I didn't send my husband a grocery list for him to stop at the store on the way home, because after 13 years together and with a 10-year-old child, he never knows what to buy for us.

I left my child alone again, with only the company of the TV to stimulate her brain and senses. I feel great guilt over this. TV is bad for kids. Video games are bad for kids. Yet what do I expect her to do when I leave her alone during summer? If I can let it go, I do, but on bad days like today, I realize that my poor child has spent far too many days in front of the TV while Mama slept. I realize that is not the priority for worry today, but each of these thoughts weigh me down, trapped in a world of things I can not do and can not change.

This is my life after Cushing's. I don't know how I got here, and I don't know how to get out. I see no glimpse of my old self, of my old life, and yet I see no path forward for me to reach a new level of happiness just as I am.

I feel the weight of the world on my shoulders. Ok maybe not the world but definitely the weight of my life and that of my family. I don't know how to carry this guilt and anxiety about the guilt with me anymore. I don't want it. I want the problems to go away, and I don't want to feel this way anymore. Yet, I don't know how it will ever go away when so much of the load falls on my shoulders. I have outsourced and paid heftily for everything I can. I pay housekeepers to come weekly to clean the house and wash our clothes. I have already perfected saying no. I say no so much that when I want to do something, there is no one around or nothing to do. 

The remaining jobs are mine, and I can't do them. I don't want to do them. They are too hard. I am a wife and a mother, and I don't feel very good at either.

I'm lost in the mundanity of my world. I don't want to be the inventory clerk of my house. I don't want to be responsible for cooking dinner every day and feeding my family and myself three times a day. I don't want to be asked where something is. I don't want to open to mail and pay bills. I don't want this to be the only thing I do with my day, so I avoid it. When I try, I quickly realize the limitations that Cushing's has placed on my body and mind. The chores go undone for another day.

With so much on my "To do but I don't want to do" list, I never get on to anything else, anything that I want to do, anything that piques my interests and makes me smile a bit. You see, I don't have the energy for those things either. On days when the schedule is empty and I could spend all day working on my interests and hobbies, I don't. I don't feel like it. I think about things I want to do when there is no time to do it. My curiosity isn't in sync with my abilities or mood. I feel guilty about that, too.  

As my day continues, so do admonishments I heap onto myself. Why don't I use my time more wisely? I'm such a phony because I am all talk. I have been talking about becoming fluent in French and moving to Europe, for how long? 30 YEARS?! I talk about going to the French movies that play once a month at the local college. I talk about studying the ancestors in my family tree. I talk about all the ways I need to renovate my house, projects to complete in my back yard and my front garden. I talk about how I have several children's books ready to write and how I just need to write them down. I even have a reminder on my phone to remind me daily to "Write for 30 minutes." Yet, I don't. I don't write, and I don't do any of the things on a daily basis that bring me joy or excitement. I feel guilt over that.

Who can make me do what I want besides me? Who stands in the way of me doing what I want to do? Me.  All blaming fingers point to me. I have 24 hours of time every day, just like you do. I am sensitive to all that I am *not* doing every day. I see around me and I hear the messages... "Live today like there is no tomorrow." I know what I am supposed to do, but I just ... can't. I'm burdened by all the living I'm supposed to cram into one day because those days turn into my life. Yet, I do none of those things that I say I want to do. I just don't want to do anything.

The days pass slowly into the next, with the only difference between them is how late I woke up, whether I managed to wear real clothes or even shower, or am I lying down on the couch or in the bed when my husband comes home. There are no other highlights in my day.

Sure, I have my daughter. As much as I love the dickens out of her, she is learning to be independent. As she does that, she realizes that she doesn't have to agree with Mama all the time. She is her own person, with her own ideas and desires. As outspoken as I am, I still sit here dumbfounded that my daughter who inherited this gene wields it against me. I have such a low tolerance for the arguing. I can't withstand the constant questioning of why I said no. With multiple explanations with more depth, she still demands more of me. I snap to break the intensity. No TV for you. No you can't go to your friends. She stomps off. Doors slam. I sit and wonder how on earth am I supposed to adapt or how will she?  I can't pass down life skills like coping when I feel like I can't cope.

My attempt to squelch the increasingly stressful episodes leave me feeling like a failure as a mother. Why can't I be more patient? She is just a kid. Why does she act that way? She must have learned it from me. She sees my inability to cope with stress, and she is talking back and acting out like I do. Either way, it is my fault. I'm the parent. I'm the mom. My child is a reflection of me.

No one cares that I am sick.

I feel like I can't win.
I don't know when it will end.

I think of all the expectations that I don't meet and I don't care about meeting. Yet the expectations I have for myself, for this life, I just can't let them go.

How do I forget everything I always wanted for my life? How do I throw all that away and dream up new dreams that are so small, they are barely an accomplishment? I have no expectations, and I have no goals. Why? Because I have held tight to small, achievable goals, and when the deadline comes up, I'm a no show. I flake. I can't hack it. I've learned not to make such deadlines for myself. 

I've seen the self-help shows and read the books and articles. I need to be more grateful for what I have. I run through all the things for which I have gratitude. I write it down only to completely forget about it a few days later. My mind is like a sieve. With all the things I forget, why won't I let myself forget all the things I never accomplished and the things I've done wrong?

How do I focus on today, when today is filled with no motivation and wanting to check out of this world with a nap? How do I focus on what I want when I have no ability to achieve my goals?

This is depression. 

Depression is the cycle of impossibility that never lets you see the glimpse of the light saying you can. That it will, somehow, happen for you--that you can do it.

Depression is sitting here wondering why you are just sitting here.

Depression is knowing you are not doing enough with your time and your life and not being able to do anything to self-correct.

Depression is spending weeks like this and only realizing later that you are indeed depressed. No other outward signals tell you that this is happening to you. Again, the weight of this discovery is on your shoulders to resolve, next to the heavy load you carry.

Once I realize I am depressed, I dutifully make the appointments with my psychologist and psychiatrist only to realize it is Friday, and I will have to muddle my way through the weekend and next week until 'the next available appointment' on Wednesday.

When the thoughts are swirling around my head so fast I don't know where else to put them, I come to a blog I have maintained for a decade.  I write it all down. On the one hand, I hope that writing it down will remove it from my head space. On the other, I hope someone who reads this blog will see herself in these words so she knows she is not alone.

I'm just hoping for my mind to quiet and to let me see some sparkle of hope that tomorrow can be different, that tomorrow can be better.

I close my eyes and check out of this world, hoping that my respite from the worry over my pain, emotions, and thoughts will give my body a few hours to reset and start again. Technology teaches us that when things go haywire, log out and try again later.

I have to put my faith in naps, because it is the only tool in my tool box that I can grab now.

I'll deal with all the guilt of inactivity and non-accomplishments later.

For now, my brain and my heart need a break.

I reach for the only thing that quiets my mind from the weight of the indignities.

I crawl into bed for a sweet nap and hope that I can tomorrow.

Monday, July 9, 2018

Cleaning while Cushie

Cushing's causes depression. Not over the way we look but by the chemical hormones our pituitary puts or doesn't put out. Excess cortisol causes depression, too.
Add that to the muscle atrophy and pain many feel when standing still, and simple things like washing dishes becomes unbearable and is then avoided at all cost.

That's why the article, "How to clean your kitchen when depressed" spoke to me. 

Clean in short spurts a few times a day. I'm already in the kitchen. I'll likely clean longer than the time it takes to pop popcorn.

I hope it works for me, and o Hope it works for you, too!


Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!

Wednesday, July 4, 2018

Cushing’s from Steroids

Think back to all your doctors appointments: How many times were you offered steroids for treatment? Steroids are passed out like candy in medical offices, urgent cares, and ERs these days. Every time, the doctors will assure us that we can't get Cushing's from these low dose steroids, even if used long term. We have always heard quite a different story from patients in our online community. Now here's an article from a medical journal saying the same thing. Finally.



Too little or too much corticosteroid? Coexisting adrenal insufficiency and Cushing's syndrome from chronic, intermittent use of intranasal betamethasone



NOTE: Thanks to my Cushie friend Susan F for the find.

Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!