My Daily Struggles; What I Don't Say, and What You Cannot See

#Dysautonomia #Smallfibersensoryneuropathy #Fibromyalgia #Chronicillness

Today has been a good pain day. Too often is this how I seem to judge each day. Not to those around me, but to myself. 99.5% of the time I am in pain. I am not tough, I am not strong, and I am by no means "getting used to it." Some days are better than others, but there is always pain. I have learned to deal with pain better than most people around me, and sadly, I have mostly learned to hide the pain from others. So, on the days that the pain does not bother me too much, I call this a good pain day. Some days the pain is unbearable, coursing through my body like electricity. This can go on for short periods of time, or it can last days. Not only is it unbearable to the point that I cannot move, it is exhausting. Once the pain has left, the energy and the life that is has taken from me is irreplaceable. I feel as if I have just ran a marathon. Each time it seems to take a little more that the last time. Sometimes I wonder just how much will it take? Occasionally, it takes days for me to completely recover. The reason for all of the pain is yet to be completely determined. I have been diagnosed with small fiber sensory neuropathy and fibromyalgia. Both of these can only be managed.

Not only do I battle with pain, I battle with a number of symptoms that are out of my control. Another diagnosis I battle with is dysautonomia. This affects my autonomic nervous system. To be made simple, my autonomic nervous system does not function properly. The autonomic nervous system controls things such as your heart rate, blood pressure, temperature, sleep patterns, breathing, and digestion, along with a number of other bodily functions. Not everyone is affected with every symptom with this diagnosis. My worst symptoms include my heart rate (fast or slow heart rate, chest pain, palpitations, occasional blood pressure issues), digestion (nausea, diarrhea, abdominal pain, etc.), blurred vision, shortness of breath, numbness and tingling in my limbs, shakiness, weakness, poor concentration, extreme fatigue (like I cannot get up), horrible temperature control, poor memory, lightheadedness, and migraines. Some other symptoms are hit or miss, and I do not experience all of these every day. So each day is like a surprise; not the kind that you might look forward too.

So, on the days that I say "I don't feel good," or I say "I'm just hurting," that means it's getting pretty bad, because if you can see it, it is bad enough that I cannot hide it anymore. I have an invisible illness. I think the only person in my life who has an idea of what my day to day life is is my wonderful wife, although, I don't always tell her everything. When it is getting tough on the bad days, she can always tell. Why I do not always tell her has nothing to do with her, and everything to do with me. She can handle it. She can handle hearing me talk about my symptoms day in and day out. She pushes for me to keep seeing the doctors when I don't want to, but I am tired. I am tired of feeling this way some days, but mostly I am tired of talking about it. I am tired of hearing myself say it. I am tired of saying the same things over and over to doctors. Side note: it took a long time, but I finally have a wonderful doctor who is getting to the root of my diagnosis and listens to me.

I do what I can with diet, exercise, and my general health to manage what I can. I take 8 pills each night before bed, another 5 each morning, and a bi-weekly injection. I also have another 3-4 pills that I take as needed for other symptoms. I get up and go about my day everyday. Most days I am doing the norm: work, kids, football games, cooking dinner, family, dog walkies, and all the little things in life that really count; because it these little things that count in the end. Family counts. Some days, I am laying in bed, I am resting, and I am listening to my body. If I have learned anything, it's that with these illnesses, I must listen to my body. I have to refuel. I have to. If not, I shut down, and recovering is even harder than the symptoms. My amazing wife occasionally has to remind me of this, but that is why I chose her as my person. She pushes me, encourages me, reminds me of what's important, and catches me when I fall; and when I am ready, she helps me back on my feet.

All in all, I'm OK!!! Life is good! Actually its the bomb! I'm growing, I'm learning, I'm flourishing, and I am living the fucking dream. Shit could not be better. I love every minute. Every day is a battle for everyone, mine just happens to be this;)