It’s been almost two years since my Devic’s diagnosis.
I live with chronic-pain and a surreal reality that I could wake-up like many of my rare disease friends have — totally blind or paralyzed. Though Devic’s disease has taken half of my vision away, every morning I’m deeply grateful for sight, even if it’s just one gift instead of two now.
I’ve been on a treatment plan since I was diagnosed in 2019 and haven’t had a relapse, but now I’m currently dealing with severe, disabling joint pain that they believe is arthritis. And I guess this disease mixed with my rare disease is the perfect combo for disabling pain. It started in my shoulders one night and before I knew it, my hips, knees, hands, wrists, elbows, and neck were all affected.
This kind of pain isn’t something Tylenol can take away. I’ve always dealt with some level of chronic-pain but for the first time in my life, I’m dealing with disabling pain — completely unable to do for myself at times.
Medical experts define disabling pain as pain that makes it difficult or impossible to sleep, get dressed, and do daily chores, whereas chronic pain is an unpleasant sense of discomfort that persists or progresses over a long period of time. I’ve lived with chronic-pain for almost a decade now, but nothing prepared me for the day when I wouldn’t be able to get out of bed by myself.
I remember crawling into bed with tears afraid of waking up because the pain was unusual. When the morning came, my eyes felt immediately wet as I realized I couldn’t move a single body part; as if an evil fairy hot glue gunned my joints in my sleep. The moment my alarm goes off, my husband is there for me. He turns off my alarm because I can’t move my arm across to my bedside table and he’s by my side in a second already wrapping his arms behind my back to push me up, grabbing my legs to pull them off the bed.
I know pain well, but on mornings like this, tears form spontaneously as I find myself utterly incapable without my husband’s help. I feel hopeless.
I wobble my way to the bathroom only to feel appalled that I can’t pull down my pants or squeeze toothpaste from the tube.
Helpless tears continue to fall as my husband slips warm socks on my cold feet or clasps my pant buttons for me.
Agitated. Miserable. Weak and totally powerless; these are just some of the feelings that rush over me when I can’t do something as effortlessly as I did before. I can’t do anything until my body responds to steroids or I “defrost“, so I tend to just go through the motions until I can’t anymore and the day repeats itself.
I can’t go through life allowing pain to dictate how I live. I’d rather live a painful life than not live one at all.
I never imagined it’d be this way when I hit 30. I had no idea I’d know what it was like to be completely crippled and dependent on another human being to just get dressed. But God did. He knew I’d be married, and that my husband would be the one there for me pulling warm sheets over my shoulders at night and slipping thick sweaters over my head on cold mornings. He knew he’d be the one to tie my shoes or tie up my hair, or squeeze toothpaste on my toothbrush for me. God knew that my husband would do all of these things for me without batting an eye, staying true to our vows and being there for me in sickness and in health.
Thankfully, it’s not always like this, and I’m hoping the medication I just started for this crippling illness will help sooner than later. I have newfound admiration for people that suffer with arthritis. I always knew it to be painful, but never that it could be this disabling. I’m thankful my husband reminds me that this isn’t forever.
Like the moon, we must go through phases of emptiness to feel full again.B.B
I’m not going to sit here and tell you that because I believe in God that it makes this road easier, but it does make it worth it. Anything is worth it if it brings glory to God and we can bring people closer to knowing Him.
I’m not perfect and I’ve many things I’m working on, but it’s all I can hope for in this pain — that through my story, someone, somewhere is brought just a little closer to God.