The Mind in Chronic Illness

This post was written months ago, and a lot has changed since. I am going to share it, but at the end I am going to write an update about how things have been now.

The post from March 13th 2022:

I realize that one of the reasons I wanted to start writing again was that chronic illness has become a big part of my life. I wanted to bring that into my discussions of mental health and recovery. Today I have been watching Outlander, crying on my futon wrapped in a blanket, wearing a travel neck pillow due to pain. I have taken Advil and Aleve in the past 24 hours with no help. I have an appointment tomorrow with a rheumatologist to go over a slew of blood results. I’m so close, but today everything feels too far. Today I feel stuck, and in this negative mind loop that just wants to escape from my body and my life. I’m tired of being in pain. Feeling unwell is one thing, but not knowing why is equally awful.

The irony is that inflammation makes depression worse, and depression then makes pain + inflammation worse. It is a messy cycle of trying to stay positive yet feeling so overwhelmed. I have not been kind to myself. When something is wrong with my health and I feel limited, I blame myself. I have been kicking myself when I am down. It is a hard pattern to break but at least I am aware of it. I try to take a lesson from everything I go through. This is teaching me to have more compassion for myself. This is teaching me to stop expecting more of myself and to try and be gentle with where I am at in the present.

This pain isn’t my every day, but lately it has been daily tears and whimpering with subtle movements. This past year my body hit a point of overwhelm and it still bothers me that I do not know what triggered it all. I always want answers. My heart condition flared, I had ER visits, mystery joint pain and unable to straighten my fingers most mornings. My endometriosis brought me back to the hospital, with fevers and clotting and very little options left for solutions. At 23, I had a hysterectomy. It revealed much trauma within my uterus, Adenomyosis, and hemorrhaging. I did not regret my decision, but I did expect to feel better by now. My heart has been good and strong, my pelvic pain is nonexistent, but I’m not out of the woods yet. Now I am trying to figure out my low red blood cell counts, low iron, high rheumatoid factor and other signs of elevated inflammation in my body. I do have hope that I will find a working treatment soon, and I will advocate for myself as much as possible in my next appointment.

In the meantime, I’m tired of holding back on writing. I’m tired of waiting for myself to feel better in order to find my story worthy of sharing.

I’m not the only one battling illness and I am not the only one struggling with my mental health because of it. It is understandable why people do not talk about what they go through. We fear being judged, or seen as craving attention. I don’t see attention as the worst thing when it comes to this. Illness makes you feel alone. Hiding it creates shame and a sense of feeling like an imposter on social media or everyday life. I would not write about these things if I felt that someday I will be writing about something else. I want to write about the now to remind myself of this time of healing and finding compassion for myself. I’m not sure just yet how the present will fit into what I will do in the future. I do know that when I get a calling to write about things, good comes of it. I have to roll with that.

& today May 21 2022:

Months ago I was beyond discouraged over my health. Doctors were pushing me to take injections of a new medication that had a lot of side effects, and I cried at every visit because it did not feel right. I wanted to refuse the drug, but I was told that if I didn’t my illness would worsen and my joints would function as an elderly person. I felt hopeless, and I tried 1 week of injections in addition to prednisone. The prednisone helped me get through my day, but it definitely made me gain weight. I was not entirely upset because I have been underweight due to health, but I knew how bad this was for my body. I didn’t know what to do. It was the only thing that was helping fast enough. I found my injection gave me the worst nausea, a migraine that lasted days, and horrible brain fog. I could not answer a simple question. I was on phone calls with my girlfriend and I barely spoke but did not know why my mind was so blank. My therapy appointments were in silence and I was so overwhelmed that I could not think straight that I gave myself panic attacks. It was so stressful realizing my mind could not function the same. Still discouraged, I stopped the medication. I told myself I would find another way despite what the doctors told me was possible. I did find another way.

I started working with a holistic doctor, and connected with a holistic health group online for other opinions. I turned to different supplements, and a new medication that I won’t mention the name, but I will say is a lot safer and will not be long-term. I also learned why my body flared in the first place. It took a while to notice a difference, and to find my right dose. I guess over time I noticed my therapy appointments were about other things, and I stopped talking about my pain. I stopped taking prednisone. I was sleeping better. I had thought I would be feeling this way for a long time. I thought I was adding another diagnosis to my list. Now, I am just grateful I listened to my gut. Doctors know a lot, but everyone is different. I did not feel like these specialists were looking at my entire history or situation and they definitely were not listening to my concerns.

Feeling like you don’t have control over your body is scary and frustrating. Feeling like you do not have a say in your treatment makes you feel powerless. Do not get me wrong, sometimes you do have to surrender and trust the doctors. In this situation, I know I would be a lot worse had I gone with their recommendations. Now I can focus on taking care of myself without limiting myself to the couch!

Oh, and I have the energy to start writing again.

More to share soon. :)