There are things that I have come to terms with as I deal with my chronic illnesses but it hasn't been easy. I have Dysautonomia and it is really an umbrella term to basically say that there is a problem with my autonomic system. Still confused? Here is a basic run down because I can get really wordy. You have a system in your body that works without giving it a moments thought. Consider your breathing, heart beat, blood circulation, digestion and body temperature regulation. Imagine if those things that happen involuntarily just decided to put on an out of office message. How would you fair? Not very well for long. This is what happens to me. It progressed from happening here and there to daily.
There are multiple conditions that fall under the Dysautonomia umbrella and my primary issue is Neurocardiogenic Syncope. Syncope, as per Merriam-Webster, is a loss of consciousness resulting from insufficient blood flow to the brain. Sounds like a lot and it is. It happens while I am sitting, especially if the conditions are right, and it can happen while I am standing too long. My Neurologist defines too long at eight minutes before I start having symptoms. These symptoms can include a flush of heat, similar to a hot flash, confusion and heart palpitations. This a warning that fainting is imminent and I must sit down or get in the recovery position STAT. The recovery position is flat is on my back with my legs elevated like in a chair up against a wall. I am lucky because most people don't get that warning, they just faint. For more information on this condition and others under the umbrella I suggest checking out Dysautonomia International.
I know that it can be really difficult when I make decisions on where and if I want to go anywhere. This past Thursday there was an event at the Loft in Columbia, MD for a Plus Size pop-up shop. I really wanted to go and I even sent a message saying that I was going to be in the building. Well, that must have been on a good day because at 6pm, the start of the event, I was home fighting sleep. I really wanted to go and I had been looking forward to it for two months but I couldn't make it. I got in my car after work and I drove straight home. This is the problem with me and this chronic illness. It prevents me from showing up to events or gatherings for many reasons. Will there be enough seating? Will I have to stand? Will I have to walk a great distance? Will I even have the mental capacity to communicate? I blame brain fog. The list goes on.
The issues that I have that fall under chronic illness are Fibromyalgia, Inappropriate Sinus Tachycardia, Sacroiliac Joint Dysfunction and Othrostatic Hypotension. I think there are others and I have stopped searching. My disabilities are invisible and that is a problem in itself because I look perfectly fine, until I pass out in a heap somewhere or limping in pain. That is another blog post entirely. I wanted to talk about the problem with making plans, having the desire to go and backing out, often at the last minute, because I have a hitch in my giddy up.
I often find myself as the person inside looking out. I can't go certain places because it may not be handicap friendly, I may be symptomatic and I don't have mobility aids. I wanted to go to the Cherry Blossom festival in D.C. and I had to bow out because of all the walking and I would definitely need a seat on the Metro. I remember braving the crowds to go to the African American Museum in the National Mall and it was draining. We took the Metro and I walked the entire museum and it took me a few days to recover.
This weekend I decided to go out. I went to drop off my children at the Herb and Tea Festival. One worked and the other volunteered for the day. I then drove to an event where my friend was vending for her business and I decided to spend sometime with her. I ended up back at the festival with my children, when I really should have gone back home until they were done. I forgot about my blood pooling issues and swelling ankles, I forgot about my fibromyalgia and joint pain and I forgot about my sacroiliac joint dysfunction and the shooting pain...for awhile. I enjoyed the seasonable late April Mid-Atlantic weather. I had my sun hat on, because I have solar urticaria and I needed to protect the skin..yes I know, another one. I enjoyed the vendors and their crafts and the food trucks just a bit. It was a great day and I enjoyed being out. I think I enjoyed it a bit too much. Before it was all over I was having back spasms and knee pain and a headache. I over did it. The joy of being outside in the fresh air came at a heavy price that only ten hours of sleep and a lidocaine patch could cure.
I wonder do you have any trepidation when going out to have a fun day knowing that it may cost you in the end?
One day at a time.