I hurt. Physically. Chronically. I have what is known as Chiari malformation (CM). I was born with it. It is a rare deformation of my skull, leaving a small opening at the top of my spine where my brain falls out and pushes on my spinal cord. This buildup of cerebrospinal fluid (CSF) causes neurological and physical symptoms.
From Chiari Malformation Fact Sheet | National Institute of Neurological Disorders and Stroke (nih.gov), symptoms may include:
- Headache, especially after sudden coughing, sneezing, or straining
- Neck pain
- Hearing or balance problems
- Muscle weakness or numbness
- Difficulty swallowing or speaking
- Ringing or buzzing in the ears (tinnitus)
- Curvature of the spine (scoliosis)
- Problems with hand coordination and fine motor skills
- Difficulty swallowing
- Breathing problems
- Excessive drooling, gagging, or vomiting
- Difficulty eating and an inability to gain weight
I didn’t know I had this until I was an adult. I have always been “clumsy” with balance issues, dizziness, and dropping things. I have had headaches, neck pain, tinnitus, scoliosis, and insomnia … but I never realized they were all related. It wasn’t until my husband, Russ, and I wanted to have children that I found out. I was having recurrent ice pick migraine headaches. Allergy and sinus medications were doing nothing for me so I was referred to a neurologist. Plus, we have a history of aneurysms in the family and I wanted to be sure it was safe to deliver naturally. The CT scan revealed a slight Type I Chiari malformation. Very slight, but present. Just enough to potentially cause all of my issues, and no real solution other than brain surgery — which doesn’t always work.
Most days I don’t notice it, except for the neck pain and headache. Some days, migraines overtake me and I cannot function. When I start to get stressed, like last month, I start to hurt more. I hold my stress in my shoulders and neck, which just exacerbates my issues. In the last couple of weeks, I have had so much neck and back pain, numbness, and tingling in my arms that I could barely function. Ice packs and heat and rest helped, but I know that I was certainly not pleasant to be around. Not a great welcome home for my husband who had been quarantining at a hotel with Covid, to say the least.
Russ encouraged me to talk to my doctors again … to be more frank about my debilitating pain and frequent immobility. Let me explain. I have always judged my pain based on what I could do. Meaning, if I had to accomplish something, really, I would physically be able to do it, but I’d be miserable. Russ told me to stop hiding. I know I am not the only one who tries to seem stronger/tougher/healthier than I am. Veterans and caregivers alike are notorious for “embracing the suck” or showing a brave face to get through tough times. It’s part of basic training. So, I started being more honest with myself and my doctor.
When you go to the doctor, you are asked to rate your pain. On a scale of one to 10 … for kids, a smiley face to grumpy face. I used to check the lowest pain scale, or where I was when I was feeling good. The bad days were not usually when I was at the doctor’s office. Realistically, my neck is always at about three. Finally, yesterday at my first in-person doctor’s visit in a long time, I asked the physical therapist, “What number should I rate because I can physically DO the movement/action but it hurts like hell and I curse the whole time?” She told me to note which movements were painful and then we'd work on them. And we did. I did stretches and exercises to strengthen my neck and core in order to relieve some of the pressure. Let me tell you, my neck and back let me know what they thought about all that work this morning. I hurt!
A quote that has stayed with me from one of my favorite childhood movies The NeverEnding Story is, "It has to hurt if it is to heal." These words are said by a healer-witch named Urgl to the protagonist, Atreyu, to remind him that the medicine may sting because it is working. I hurt because it is working. I need to move and shift the muscles to make them stronger. It is not easy right now but I think it is worth it if it leads to long-term healing.
And what about emotional pain?
How does that pain scale translate for emotional pain? I used to bottle it up, tuck it away, and put on a brave face. Abuse at a young age made me pretty great at hiding the truth. I didn’t want to burden anyone with my issues. I know too many caregivers who are guilty of doing just that — putting others’ needs before their own and hiding how they are truly feeling. The more I start to recognize what I am feeling — both physically and emotionally — the more I can speak up for myself, and advocate for what I need. It is not easy, and not something that everyone wants to hear, but I need to care for myself, too.