My Vicious Cycle

I want to talk about depression, chronic illness, and me.

For me, the journey in and out of depression is cyclical as I deal with high levels of pain, frustration, hurt, disappointment, fear, loneliness…the list really could go on and on. Right now I am heading down into the low part of the vicious cycle.

So this is what I try to do.

I am truly thankful for many things in my life so I try to think of those things and notice the small things around me on a daily basis. I find myself being grateful for so many little things that other people are just not even aware of because their minds and hearts are in very different places. I feel like my disease has become a sort of tuning rod toward the little, but crucial things that can help me get through the day.

The Downswing

But, my health has been degrading, and in a rather rapid manner more recently. I have lived with high levels of fear and anxiety as to whether I will find the right cocktail soon and come out of this or this will soon become my “new norm”. It feels like I am being propelled forward, yet catapulted backwards at the same time. My disease is getting a stronger hold on my body and this triggers many fears about the present and the future beyond just grappling with the increase in pain, hurt, and agony that can be daily life.

Girl on her knees with her head laid down in the seat of a chair

My Green Space – Colored Pencil

I have small children and I make more money than my husband. We are not in a great place financially, but if I were to go down we would be in a world of real hurt. With the loss of my job would also be the loss of health insurance for us all, additional benefits, medication. This would bring me to a standstill. I have missed a day’s worth of my meds in the past and it took me about four days to recover. What would my life be like if I went for an extended period of time without coverage and help? I shudder at the very thought of it.

But, there is a whole other level to this that is beyond just circumstances and situational difficulties. I have accepted that my body is deteriorating – sometimes more quickly and sometimes more slowly based upon my disease activity. And, although there are natural remedies that can help decrease the amount of inflammation or pain that I feel they come nowhere near stopping it and can only assist what my current cocktail is doing in my body. My disease is aggressive and I always know right away whether a medication is going to help me or not. My body fights back and it fights back hard. Although it wasn’t easy – I accepted when I had to start sporadically using a cane. And, even though at first it was difficult to admit that I can’t sit on the ground and get back up or that baths are out of the question without assistance, it is just my normal at this point and I do what I need to do.

But now, after I fell a few months ago and sprained my ankle and tore ligaments, it seems to have triggered a domino effect in my body that was enhanced by the fact that my biologic just isn’t helping me the way it is supposed to. I live with constant pockets of inflammation in my feet. They move around from day to day but are real, live pockets of fluid that squish out between my bones. Sometimes those pockets protrude as bumps on the top of my feet and sometimes they push out under my feet and make it almost impossible to walk. So, that is where I am now. I am walking with a cane daily and struggling to do so. I can’t get across a room without it because the pressure on my feet causes so much pain I can’t do anything but hobble in agony and then just stop. Even though my job is sitting for the most part, that doesn’t make a difference and the fluid doesn’t recede when I elevate my feet.

The Dark Side of the Moon

For me, this is the dark side of the moon. My disease has always been worse in the lower half of my body and losing the ability to walk has been a tremendous fear of mine from the beginning. I used to run, and after coming to terms with the fact that I will never run again I may now have to deal with never walking again. I don’t know what the answers are and I don’t know how to fix this.

Moon - left side is bright yellow, blue, and green. The right side is dark and stark

Dark Side of My Moon – Conte Crayon

So, I am depressed.

This isn’t the kind of “depressed” that you feel better from after eating ice cream or chocolate or anything sweet that you crave when you are stressed. It also isn’t the kind of depressed where you just feel sad for a bit but your friends can talk you through it or you get up the next day and somehow just feel better.

This is darker, deeper. It is a place of quiet and loneliness and isolation. The number of people around you doesn’t make a difference and may make it worse. This is the kind of depressed that makes you miss parts of a conversation and stare blankly at someone’s face for a while before realizing they stopped talking. This is the kind of depressed that wrenches words from your mouth and makes you unable to talk about your fears and anxiety without randomly and uncontrollably breaking into deep sobs that won’t let words squeak out.

This is also the kind of depressed that makes you slump into a chair and stare blankly into nothing – not really seeing anyone or anything in front of you. This is the kind of depressed that blankets you with sadness and lack of ….. everything else. You have to force yourself to do what you know you should be motivated to do. You have to push your mind to think of the tasks that need to get done. And, although you know that you will come out of this at some point you just don’t know when that point will be. For the most part you feel empty and sad. And, sometimes you don’t even feel that. Sometimes, you just feel empty.

The Upswing

I am sure the upswing will require several things from me including doctor visits, more self-education, attempts at new self-care methods, and pushing through the quiet desperation inside of me through my writing. Where does this leave me? Will I do something drastic like take my own life? No, I won’t. I know myself and I know my mind. It just means that I am visiting this land of anger and sadness and depression one more time and that sometime soon I will get out of it. I don’t know how or when, but I know that I will.

In the meantime, I will have to sit with my anger and sadness and let it teach me something new about my strength and ability to live with chronic pain and illness. I will have to learn more about me and how to live well. I just have to. Too much is riding on me and my ability to resiliently respond in the face of deterioration and further disability.