Tuesday, December 2, 2014

The Invisible Decline

I am working on other posts, especially ones that I think are helpful. I’ll start one and then abandon it. I guess I need to honestly discuss what I’m living. I don’t want to talk about this but I think I need to get it off my chest before I can move on—this is real. This is true. This is now.

I’m living the invisible decline. I was hoping when I left work that things would plateau a bit or I could at least regain some sort of control, but I’m still learning that control is an illusion. I have always thought since this thing started a few years ago that things would eventually improve. Many of those with chronic illness live with this hope despite declining. I want to pretend that everything is ok all of the time and be a rock star and just go with it.

I see friends, family, acquaintances, doctors, people, and I look the same to them. I look like the same person I was three months or a year ago, but I’m not. I continue to decline—decline with no real explanation. The things I could do just two months ago, I can’t right now. I’m still hoping to reclaim them and am continuing to work hard to do so. My symptoms continue to worsen. The bright spot is the medication I recently started is abating some of it and physical therapy is giving me some strength back. I still have hope that my doctors can make more sense of this puzzle.

I’m grieving and I’m adapting and it’s a slow, painful process to live through. But the decline isn’t completely invisible. If I leave the house, I need the wheelchair almost all of the time. My energy only lasts in short bursts and then I crash very hard and don’t recover for hours. I at least have cats who are willing to snuggle during that recovery time and a husband who never questions what I am experiencing.

I had a wonderful, beautiful Thanksgiving with my family last week that I am immensely thankful for. That day was a real gift. At 8:30 I hit a wall really hard and my sister said, “When I got here you looked good, now you look completely different.” It wasn't invisible. I peeled myself off the couch and my husband drove us home. I feel so much gratitude about making it that long and getting to really enjoy that time.

I don’t always feel sad about this invisible decline. A lot of the time, I’m just trying to adapt to it. I wasted a lot of energy the last year or so fighting it. I don’t have the energy now and maybe that’s a good thing. Honestly, I'm feeling more content with life than I have in a long time because I'm learning how to accept and adapt.

A few weeks ago, I wrote this is in my journal as I way to try to cope. It’s mental dumping to just say what I need to say about it so I can analyze it more clearly. This is the harsh reality of living the invisible decline. I know there are many Spoonies out there in the world who also are living it. So many of them out there. I've heard their voices and joined their struggle. The sense of powerlessness can be overwhelming, but take comfort that all of us, every living thing on this earth is powerless in some sense, and that’s ok. We don't have to succumb to it. Powerlessness doesn't have to define you. I hope these words find you well.

Sinking. Like I’m sinking into quicksand and I’ve lost the strength to pull myself out. Every time I try to adapt to what I’m able to do, the peg moves lower.  Is this life now? Sometimes if I look into the future, it will swallow me whole. I can’t think about it. I can only adapt to each moment. The decline feels like some sort of moral failure. What am I doing wrong? Am I not doing enough? I push myself so hard every day to try to reclaim my treasure, always searching for what I’ve lost but it’s left no trace. No crumbs to follow. Like a weight is tied to my shoulders and I’ve been thrown overboard. My markers of identity have been washed away in a sea of illness. My achievements, my titles, my earnings. Let the tide just pull me in. Wash over me. Let the strings of the universal design pull and guide me. Because I can’t fight it anymore. There’s a new path somewhere. If I hold on. Just hold on.

Feel this tug in the back of my navel. But that’s not what it is. The darkness wants to subsume me. But that’s not what it is. This is grieving, growing pains, and the phoenix rising from the ashes into something new. Something transformed. Sometimes the choice is made for you and you have to make your life into the shape of something new. I’m still pondering that shape, or the universe is pondering it for me. It’s an exchange, a collaboration. The darkness stares back at me, always trying to win. Always trying to cheat me and lie, make me believe it’s too much. That there is no winning. The darkness can win sometimes but not all the time.

I have faith. Such faith because I’ve seen the darkness many times and made it to the other side, sailed a ship straight through it to a serene shore.

I’ll wake up tomorrow. Open my eyes and let the day take me where it will. I will feel gratitude for everything I have and everything I’ve been given. I’m free to accept that this is what’s happening to me. This is what life is. We continue, beating on, against the currents. There is strength and power in this.

I’m figuring out what this path is. What is the journey that lies ahead. Keep listening to the messages of the universe and they will plot a course. Find a way.

And hold it. Hold fast to it.


  1. You are absolutely allowed to have these feelings, but remember, in no way is succumbing to an illness (something over which you have no control!) a moral failing. The only moral failing is in those who would treat you that way.


    1. Thank you very much Carrie Anne. I try to intellectualize out of the idea that it's a moral failure, but it surfaces from my subconscious now and then. But I know it isn't true

  2. I hate that you are going through all of this but I know I have to focus on love and send strength your way. Feel what you need to feel. It's ok to be honest. You're human and have are allowed to feel all these things. You're a strong beautiful lady and I love you.

  3. Oh Stefanie. I'm so sorry. You know I have a little taste of this chronic illness mess and it's so so so hard to keep hitting the lows and very rarely gaining any ground. I love you lady & Greg and I will be getting your badass power chair to you asap.

  4. Sending lots of love your way and wishing we lived closer. Absolutely love your honesty. Keep holding fast and when you can't, know that we are all there to help you hold fast. It's a crazy ride you're on... Allow yourself to feel what you need to feel and do what you need to do.

    Christi & Ian (and the pets--they send lots of cuddles your way!)

    1. Thank you so much to you both. I send love your way as well :)

  5. I'm sorry to read this. I know how you feel from my own experiences. I don't have the same illnesses you do, but our struggles sound very similar. For a while I thought preparing myself mentally was the best way to face the future, but now it feels like it's a self-fulfilling prophecy. I don't exactly expect to wake up feeling great every day, but I don't automatically assume I'll feel terrible either. At least, I try not to. It's all a process, isn't it, with no guidebook? I'm glad you shared your beautiful words here, I'm sure there are so many who can relate!

    1. Thank you Sarah. Taking it one day at a time is truly the antidote. You are completely right. I like your suggestion to make no assumptions about each day. Thank you for reading :)


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