Hanging Tight through Chronic Illness

I feel like I’m in a rush.

A rush to complete important things in my life before I lose the ability to accomplish them;

A rush to raise my children the most decent way possible before I lose the ability to see them flourish;

A rush to be the best wife ever before I lose the ability to continue trying.

I was validated recently by a mentor concerning this. Because of chronic illness, autoimmune diseases, and a diagnosis that feels like a dark cloud slowly lurking behind me in the shadows, I started to isolate myself from the world. 

Remember the dizziness episode I shared in I am not my family of origin?

Fast forward a bit, I was synced with a group practice that attempted to get to the root of my left ear fullness, tinnitus, and sudden, unexpected bouts of instability.

In this search for relief of my symptoms, and prior to the diagnosis, I participated in a brain MRI.  The goal as I understood it was to identify anything within my head that may be causing or contributing to my hearing loss and unsteady spells.  Incidentally, what was found is iron in my basal ganglia.  In English, there is iron accumulating in my brain, in a space mostly responsible for controlling movement among other cool ass things.

Believe it or not, iron in the brain is a thing.  However, extra iron visible on MRI is not good. This form of extra accumulation in the basal ganglia is known as NBIA, or Neurodegeneration with Brain Iron Accumulation.  The first thing I did when I heard of all of this was hit the inter-webs.  I found an incredibly helpful resource at nbiadisorders.org, and the people involved are so kind, working to help families everywhere find a cure for this debilitating disease.

According to the NBIA Disorders Association website, NBIA “is a group of rare, genetic neurological disorders characterized by abnormal accumulation of iron in the basal ganglia.” (https://nbiadisorders.org/about-nbia/overview-of-nbia-disorders

Think of movement regulation here, or losing it.  Think of progressive movement disorder. Think Parkinsonism, amongst other things.

Think, oh shit, what does my future look like? 

While I was comforted with the obvious devotion to uplifting families and finding a cure, I was deeply dreading the what ifs.  As I shared earlier, I am already managing chronic illness and autoimmune diseases, the most “visible” are my eyes (ha – that was a pun I didn’t expect).  I am actively managing a rare eye disease that causes my corneas to erode…

It is as nasty, painful, and un-sexy as you are imagining it.  Since I want readers to come back, I won’t go into the details of this rare (and gross) corneal dystrophy.  What I will share is that I usually have about three or so different eye medications on hand, an eye patch on ready, contact bandages in one or both of my eyes, and an attitude that says BRING IT ON.

But to put these two medical issues together along with the manifestations my health continues to behold me, it’s really, really fucking hard. 

Every muscle spasm, or jerky movement is internally questioned.  Are these finally the physical manifestations I am afraid of? Or did I simply push myself too hard physically doing whatever mommin’ I’m up to?

All of this has put me into a space of self-love I haven’t ventured into before.  My friends, I would like to share what speaks to me as well as give you some encouragement.

  • I have limitations, but I am not those limitations.  It is incredibly easy for me to identify myself by what I can’t do or accomplish, especially when I am temporarily blind.  Knowing that this comes and goes (thanks crappy corneal disease!) I am working out ways to keep my world moving even when I can not see it.  And just because I can not see it does not mean I do not belong in it.
  • Support, Support, Support.  I am building my support squad one person at a time.  A support system is a necessity, especially with chronic illness. 
  • Advocating for self.  Doctors are freaking smart, but you are YOU and no one else can be you.  Speak up:
    • if you don’t understand what you are being told
    • if you don’t understand the paperwork involved
    • if you have questions
    • if you are not comfortable with the treatment approach

I often bring a pen and notebook to my appointments with prepped questions so I can stay focused in the small allotted time I am given with my doctors.  Take notes.  Don’t be afraid to get all of your questions answered.  Bring someone from your support squad if you need back up during your appointments.  This is your life and you are important.  Let’s move about in that mindset.

  • Say No.  No is a complete sentence.  I now use it this way when setting boundaries to ensure balance in my life.  It is not OK for me to over commit; all it does is wear me out and cause my body to respond unfavorably.
  • I am not weak if I sit my ass down.  Rest is imperative and restorative.  I can not be the person I want to be if I do not rest.
  • Asking for help also does not make me weak.
  • Seeking professional help is always an option. I’m not just saying this because I’m a counselor, I’m saying this as a human. Sometimes it is just better to have that objective and clear view when you’re deep in the weeds. Seeking professional help does not make us weak either.

To my chronic illness / autoimmune warriors, hang tight. This fight is worth fighting, and there is still so much life to live.

I am grateful to share this space with you.

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