“Nobody can teach me who I am. You can describe parts of me, but who I am and what I need is something I have to figure out for myself.”
I have often asked myself the question, “Why couldn’t my illness have been a simple one?” Not the diagnosis itself, but the complexity of it. To be more precise -- the difficulty I experience describing my illness to others. That simple process either creates more questions, confusion or silence. I initially thought the response I received from people was due to my delivery of the information, but as time has gone by I have come to realize that my diagnosis is just complicated. My primary diagnosis is Autonomic Small Fiber Neuropathy. My secondary and third diagnoses are POTS (Postural Orthostatic Tachycardia Syndrome) and Ross Syndrome. All three diagnoses affect my Autonomic Nervous System and are closely connected with one another.
The easiest way for me to describe my illness is in two parts -- the first being the autonomic portion. The word autonomic refers to the part of my body that is being affected which is my Autonomic Nervous System (ANS). Many people have never even heard of this system in their body. It is the part of the nervous system that operates all of the processes in the body you don’t consciously think about such as your heart beating or how your pupils dilate.
The second part of explaining my illness is the Small Fiber Neuropathy (SFN). SFN occurs as a result of damage to the small fibers of the peripheral nervous system. I think of the small fibers as the communication highway between my brain and the many systems in my body. Because they are damaged the communication to my body does not work properly and the result is POTS and Ross Syndrome.
My diagnosis does not have an underlying cause so my symptoms can be managed but not cured. The frustrating part for me is there are so many symptoms and they all have minds of their own. I can have my day perfectly planned out only to have it completely derailed because of some unexpected symptom. I have no control over my Autonomic Nervous System, so I never know when symptoms will present themselves. I experience dizziness and vertigo and no longer drive, my pupils don’t dilate, I have tachycardia, my blood doesn’t flow like it should and it is always a gamble when I eat a meal. My blood pressure drops dangerously low when I stand up which makes me a prime target for fainting. The fatigue and brain fog are overwhelming. I have joint pain throughout my body and pins and needles in my hands and feet. My list goes on and on. I sometimes laugh at my symptoms because prior to becoming sick I was that gal who had everything under control and prided myself on that ability. Autonomic Small Fiber Neuropathy doesn’t even come close to representing anything that has any sort of control.
The biggest low I have experienced through my chronic illness is the loss of myself and the life I used to have. I worked a job I loved, I was an avid runner and hiker, I had a full social life, and I was surrounded by many family and friends. When I became ill I was exposed to the same grief that a person would feel when they have lost a loved one. The person I lost was me. The five stages of grief are denial, anger, bargaining, depression and acceptance. I experienced them all and I am so thankful I have finally accepted my illness and my new life.
If I were to look at the highs of my illness I would have initially said that there weren’t any. The whole thing was negative and until my official diagnosis I lived each day knowing something was wrong but lacked the knowledge of what that something was. I became depressed and hopeless. I started working with a great counselor who guided me through the process of accepting where I was in my illness. Through this process I started to build a new life for myself that was compatible with the new me. I can honestly say, despite being diagnosed with a chronic illness, I am finding joy and peace in my life. I have found that crocheting baby blankets for the local NICU unit and writing cards to the folks in senior homes brings a lot of happiness to everyone. My thinking looks beyond the box it was once confined to and searches for new and exciting things I can try. From learning how to play the cello to enrolling my goofy little Schnoodle into a training class to become a therapy dog. I choose to focus on these moments rather than dwelling on my illness.
I feel very optimistic about my life. My desire to live a life full of positivity and good. I have two options -- I can get lost in my illness or I can live beyond my illness. I choose to happily live beyond it.
What is your chronic illness and how would you describe it? What are some of the highs and lows you experience? How are you feeling at this very moment?
Weekly Community Question
What is the biggest challenge you face with your chronic illness?
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