Living With Autonomic Neuropathy (and How Long It Took To Be Diagnosed) Written by simplytiffanyblog 2016
You know, one thing I feel is not talked about enough is the effects of autoimmune diseases. In fact, I didn’t know they had existed until I was diagnosed with one: autonomic neuropathy. It is a rare neurological disorder that can greatly affect a person’s quality of life, although every case varies. I live in a bed. I have been using a wheelchair for ten years now, and have been unable to be out of bed for about five years. I can barely walk, and when I do it is with a walker and the assistance of two people, and only for a very short distance. I want so badly to raise awareness for this disorder and how it affects people, because even my closest relatives – including those who tend to my daily needs and personal care – just can’t fully comprehend what day-to-day living is like for those suffering from autonomic neuropathy.
*Another reason I hoped to find the courage to touch on the subject is the possibility of helping someone else who may have an autoimmune disease and has yet to be diagnosed with it. I had spent many hours searching the web, reading other people’s stories and symptoms similar to mine, as an attempt to diagnose myself while my doctors kept saying that my tests were normal. This is not an illness that is easy to diagnose – and I’m not sure there is a test to clarify that one has it.* It is a matter of ruling out other possibilities based on your symptoms, and finding a doctor who is knowledgeable on the subject.
Autonomic Neuropathy has changed my life.
I could almost say it has ruined my life. All of my hopes and dreams I had of the future could very well be crushed. As previously stated, I live in a bed. It is a daily struggle to find the strength to sit in my wheelchair for 30 minutes, and even more of a struggle to leave the house, which I rarely do. Many doctor appointments have been cancelled at the last minute, and I know the offices who tend to my care get perturbed with me for all the cancellations I cause. Just last month, I made it to a specialist’s office, but could not talk to him because I was vomiting in his trash can throughout my allotted appointment time. I have had three separate specialists tell me that this is the worst case they have ever seen, and they were all astonished that I have encountered such an illness at a young age. Not a comforting thought.
Allow me to briefly explain what this disorder is. Autonomic Neuropathy. Neuro = nerves. Pathy = disorder. So simply put: it’s a nerve disorder. Autonomic is referring to the autonomic nervous system. You know the nervous system that automatically controls the body’s organ functions? When the nerves stop controlling the body’s natural organs and functions, it spells trouble.
A description from online states: “Autonomic neuropathy is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion.”
I encounter so many separate symptoms from this disorder, that it is hard to remember them all without really pondering the thought. (Then again, the doctors have told me that poor memory could be from my medication.) Let me go into the symptoms that I personally have encountered, although every case varies greatly from patient to patient. Even the organs affected could bring on different symptoms. Imagine having chills in July, and needing to be in front of an air conditioner in February from badly sweating. Imagine your bladder so full it is ready to burst, yet you have no urge to urinate on some days.While on other days, you’re relieving your bladder constantly, even while not drinking as much. Imagine not being hungry most days and therefore not eating that second slice of pizza you are craving. Imagine being perfectly calm one second, then having a full-blown panic attack the next, even when you’re not worrying or feeling fearful in that moment. Imagine at least fifteen migraines a month, and not enough medicine to get you through. There are no triggers for these migraines, they just happen. Imagine never knowing whether your blood pressure is going to be high or low – because it fluctuates immensely between both extremes. Imagine having diabetes and never being able to have your glucose levels controlled. Your stomach won’t digest the way it should, which means your levels will drop and stay low for hours because you took insulin but the stomach decided to not digest the food properly. When it does finally digest, the insulin has already passed through the bloodstream, and your glucose levels consequently spike from having not enough insulin to cover what the body is finally digesting. When to take insulin can’t be guessed, because digestion happens at various times. Therefore insulin must be taken right before your meal. Imagine being so light-headed almost every day that you can barely stand up, and you can’t sit up in bed for long periods of time before you’re dizzy and vomiting. Because your arteries aren’t constricting as they should resulting in a lack of blood flow to the brain, this debilitating symptom can never be cured. Your body has grown used to being in a horizontal position. I can confirm that all of these symptoms have become a part of me. Then there are emotional consequences as well. Can you imagine lying in bed and inviting a friend over to visit? I didn’t spend nearly enough time with my best friend before she moved because of how embarrassing it was to have her see me like this. Not to mention, this really limits what I could do with her. I am thankful to the Lord for allowing me to attend a few years of school, and introducing me to a friend who was even willing to come sit at my bedside, knowing I may get sick and ask her to leave, which has occurred more than once. All we could do was watch TV or talk, but that seemed to be enough for her. Alas, we teenagers became adults and God led her in a new direction, but we still keep in touch when we can.
This all started back when I was ten years old. That was fifteen years ago, and it just gradually progressed over the years. Autonomic neuropathy doesn’t happen instantly. It comes gradual, and there is no cure to reverse nerve damage. It is a rare illness and not often thought of. I couldn’t begin to count all the physicians and clinics I have visited in the past fifteen years! Oddly enough, it wasn’t until my fifteenth year of having this that it was finally diagnosed – just a few months ago actually. Some doctors I had seen told me it was “all in my head”. Some said I was faking this to get out of going to school. I was even accused of sneaking snack food to increase my blood glucose levels while my parents were sleeping. Really?? I am not sure the teachers at school believed me, although I hope they did. I had to skip recess and gym class most days. Field trips became less and less frequent. I started to miss a lot of school days, and it got to be so many that, starting in seventh grade, I had to be home-schooled. I only had one friend from school who stuck by me after that, which is understandable because it is incomprehensible to a child when another child becomes ill.Eventually I stopped going to the mall. It has been six years now since I have been to a movie theater or a Wal-mart. I missed out on my best friend’s graduation, bought concert tickets as her graduation present, but had to ask her to choose another of her friends to go with her because I was too sick. I stayed home and cried that night. I continuously miss my cousin’s chorus concerts in school, was never able to be the “big sister” I had wanted to be. I haven’t participated in family Christmas gatherings or reunions for years! I am passionate about baking and do so on my ‘good days’, but my version of baking is having the ingredients brought to my bed and I make what I can right here. I lost my spacious and beautifully decorated (for a teenager, that is) bedroom in 2009 when I suddenly had to stop climbing stairs. Now I live in a small den connected to my grandma’s living room, with no privacy.Life just never seems to play fairly. It’s a complicated life. An unpredictable life. An often depressing life. An eye-opening life.
If you or someone you know is suffering from unexplained symptoms, even when doctors say all the testing is normal and maybe they don’t even believe you feel the way you do – when you feel that all hope is lost, remember that there is still hope. Don’t you ever give up. I had to wait fifteen years before visiting a doctor who not only learned to believe me, but was able to define the illness causing the strange symptoms I have been facing. And I must be truthful here. When the doctor looked at me and said softly, “There is no way to reverse nerve damage. There is nothing we can do to make this better.”, it was depressing. Yes, I felt hopeless and devastated. But quite honestly: it is a comfort to have a name to match my strange symptoms. There is an odd comfort in simply knowing. If you are suffering from something like this, reach out. Do some research online, find support groups for undiagnosed diseases, surely someone out there has the same undiagnosed disorder as you do. Don’t lose hope.
Appreciate every little thing you have in your life and take nothing for granted, because you never know when you might lose it.
So needless to say, my life isn’t going the way I had planned. I may never fall in love, hold a job, live on my own, have children, or do normal things that we all spend our childhood endlessly dreaming about and waiting for. But if I have learned anything from all of this heartache and sickness, it’s that you should never take anything for granted. I believe that God is in control. Time and chance happen to us all as Solomon wrote in Ecclesiastes, and sometimes we may never find out why — not on earth, anyway. I know for sure that I do not like the hand that I was dealt, but I can’t go back and reshuffle the cards.
If we trust in GOD and HIS promises, I am certain there will be a better life to come. Whatever you are dealing with, please know that you are not alone. There are people online now who you can reach out to. It’s so simple these days! You may even meet someone who is going through a similar situation as you are. Take one day at a time, pray about it, trust God, and never give up! Keep on fighting and hoping for better days to come, I know I will. With God as your captain, you never know when or how the wind may redirect your sail.
I can’t pretend to be an optimist. I’m usually quite the pessimist about this. There are days when I cry, scream, feel angry as if I just can’t take this for another day. And it is in those moments, that we need to remind ourselves of what Mr. Thomas Jefferson once said: “When you reach the end of your rope, tie a knot in it and hang on.”
https://simplytiffanyblog.wordpress.com/2016/09/12/living-with-autonomic-neuropathy/
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