I Don’t Fit In A Box

by Jul 24, 2020Recovery4 comments

Hi!

I’m Sarah

I’m recovering from a brain injury. But there’s more to me than that.

I love summer. I can’t get enough of the warm bright days. Midway through the season even my enthusiasm wanes. I reach the point of saturation. It is too hot and too bright. I seesaw sharply and long for winter. 

 

My vestibular migraine started before Christmas and it will not end. While my family opened presents I lay in a dark room. Pain was my constant companion. The intensity consumes me, emotionally and physically. I tried different combination of medications from my family doctor. Nothing touches it. I am at my breaking point. 

 

My parents drove me to the ER. I hide from the sun under a towel, the air vents on full blast. Migraines and Australian summers do not mix well. After a six hour wait, I was sent home because there were no beds for people with migraine, the receptionist said. The next day, after another six hour wait, I am admitted. 

 

I spent four nights and five days in hospital. Tested and discharged. In and out. It felt like a month. At home now, I am relieved. I take my first shower and scrub off the sticky adhesive left by EEG pads.  My arm is sore from the catheter. My heart feels like my body looks, tender and bruised. I was given nothing for vertigo or the chronic migraine pain. I was told I did not have these conditions. I was told, “It’s all in your head”. 

 

I’ve lost count of the many times I have heard this refrain. I thought the hospital system could help me. I discovered it is not a friendly place for someone with a chronic illness. In fact, I felt unwelcome. I feel deflated and demoralized. I’ve done myself more harm than good. How long does it take to recover when a hospital sucks energy out of you? 

 

During my stay, I get a bed in the neurology ward. I feel it is a good sign. Last time I went to hospital with similar symptoms I was sent to the psych ward. I have scans and tests on my head. I am hopeful I might get relief from the pain. 

 

Migraines don’t show up on MRI’s. Nor does vertigo, tinnitus or chronic pain. How do I convince the doctors what’s wrong with me if nothing shows up on a scan? My words fall on deaf ears. 

 

The next thing I know my small room is crowded. The head of psychiatry and his assistants aka the acute mental health unit are here for a little chat. I realize the psych ward has come to me. I lay my bed back on the pillow. Here we go, again. 

 

“You have been sick for over two years. You are young. That is not good.” A doctor comments. What is wrong they ask. “I have a migraine”, I reply which does not satisfy the white coats crowd. I was met with the same skepticism in ER. The triage nurse, as she puts in my IV line remarks, “Really? A six week migraine?” Her doubtful face says it all: I don’t believe you. Now in front of the psychiatry team, I repeat my plight. “I need help. Vertigo.” I lack the energy to explain. My head feels as if I’m on a rocking boat, even when I lie down. “Who diagnosed you with vertigo?” They ask. “Vertigo is a subjective symptom, you could be making it up.” 

 

Immediately the doctors speak their diagnoses circle the room like an angry hornets nest. Their words sting me as if it is an actual bite. “She’s having a panic attack. It’s anxiety. Depression. She’s a high achiever. A hypochondriac.” With so many voices talking at once I lose track of the theories being thrown around. 

 

The team can’t agree. “She has vertigo. She doesn’t have vertigo.” They can agree on one thing. “She needs anti-depressants.” The questions continue, they ask, “Who is your psychologist? I reply, she died last year and I haven’t found a new one.” That sparks their interest. “That must be traumatic for you. That can make anyone depressed.” 

 

After the interrogation they determine I’m a candidate for immediate medication. They have made a swift diagnosis within 12 hours of admittance. I was asleep for most of that time. With the last ounce of strength, I speak up, fatigued from weeks of pain and dizziness, “I disagree and I won’t take medication unless you perform a proper mental health assessment and compare this with previous tests on file at my family doctor.” My doctor has never been concerned about my mood. I trusted the professionals to help me. Now I’m not sure. “I have a migraine and I need pain relief”, I persist. 

 

More discussion ensues, I ask for further testing. They refuse. We reach a stalemate. I make it clear I won’t be bullied into coercion. The team departs leaving a vacuum in the room. I am still not offered pain medication. 

 

My parents believe the migraine is real. They are by my side everyday, ready to answer the barrage of questions that are fired at me. They can’t be there every second of the day. There are times I need to advocate alone. The migraine makes it hard to talk. Or think. All my energy is focusing on what I know is real, and not get sidetracked by their suggestions. 

 

It doesn’t help that I am placed on two hourly observations. Even overnight. Bright light is shone in my eyes. I am shaken awake. The IV drip beeps constantly. It is an assault on my senses. The ward is locked by a gate with a code. I don’t know the code. I imagine my room to be a prison cell. 

 

I am returned to the care of the neurologist. More brain scans are done. The seizure tests come back clear. “You are an unknown. I can see you are not well”. I ask the doctor what he means by that. He skirts around the question, instead answering. “If you get 20% better then that is success in my books.” A lack of direct answer frightens me. What does he mean 20% better? Has he given up on me, I think. I peek over the nurse’s shoulder and read my chart. “Unexplained medical symptoms” are written. I realize they can’t fit me into a neat little box. 

 

I am assessed one last time. I can shower and dress myself. I am not a threat to myself or society. I can go home. A registrar who I’ve never met before delivers my discharge papers. I scan the report, the final diagnosis states likely Functional Neurological Disorder. I’ve heard of this condition. Its historical name is Conversion Disorder or Hysteria. It seems they squeezed into the last box they could find. I ask the registrar, “What about pain relief for the migraine?” He looks blankly then skims my report. “It says you need counseling.” 

 

Outside the front doors, the first thing I notice are the colors: the vibrant green of trees and blues of the sky. The hues of the natural world. These vivid colors are omitted from the ward. I left my room only when wheeled out in a wheelchair for scans and tests. The smell of fresh air signifies my freedom. I look forward to cooking and eating my own food. My family doctor calls my mobile. He has been emailed a copy of the discharge report.  “I don’t agree with this diagnosis. It’s what they say when they don’t know what’s wrong. Keep searching for an answer. Sarah, if anyone can find it – it will be you.”

 

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Sarah Rasborsek

Sarah Rasborsek

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Sarah is author of Healing My Brain, My Way. She writes for people who are ready to live a deeper, richer life. She posts everyday here: instagram.com/sarahrasborsekRead her latest book here

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4 Comments

  1. Avatar

    You’ve cleared so many hurdles, obstacles and mountains Sarah. It’s so sad when the mountains are those institutions meant to help us.

    Reply
  2. Avatar

    I will keep this quick because I find myself to get work and consumed with myself on these new medications. I just left the hospital for another seizure episode less than two weeks ago. Congratulations on your courage and your comeback, it’s wonderful to read. It is also empowering. What I also loved reading were the detailed descriptions of the feelings of near powerlessness within the hospital and confusion and frustration with the “experts”. but also your detailed descriptions vision and fragrances upon discharge. I’ve tried to explain this to family multiple times this year and they lovingly listened to me, bu I know they don’t quite understand the depth of joy that the details bring to me in life now. Music too. It seems…so much fuller to my brain, or at least, my brain seems t be putting all the complex parts of the music together. Songs I’ve listened to for 25 years or more, I’ve heard things I’ve never heard in them before, new details

    Thank you for letting me share and maybe even….understanding.

    My Best to You in Your Recovery.
    Jeff

    I identified with you so much. I left my left visit with more questions than answers. I believe I’m getting great care. I also believe I can be listened to better to help my condition. Thank you Sarah.

    Reply
  3. Avatar

    Sarah, you are not alone in these experiences. It was like you were writing my story. Head injuries, chronic migraines, relentless pain… I thought the medical profession of all people would understand. After a decade I can say, they cannot. They are so ‘proud’ they are unable to say ‘We just don’t know that much about the brain’.
    One day they will know a little. But until then, our experiences are real.
    If it helps, I would advise avoiding the hospitals completely during migraines. They are the worst surroundings to be in and the staff far from sympathetic or helpful.
    Self-care and learning to be patient with your body is much more helpful.

    Reply
    • Sarah

      Thanks Angela, you understand. I agree. How I wish they would say we don’t know – but keep trying! I’d find that helpful and encouraging. Thank goodness we can reach out to our community and share our stories. That is some comfort.

      Reply

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