What it’s like to be chronically ill:

There are way, way too many of these stupid things out there, lurking around the population just waiting to attack. Did you know that, out of ___ billion people, a third of the population here in the United States are suffering from a chronic illness? Most of them have more than one. It’s hard to picture this many people developing diseases like these – the most common being heart disease, depression, strokes, anxiety, etc.

It’s imperative to note that, just because you have depression or anxiety, does NOT mean that you are or will become impaired. Now, there are A LOT of folks (including myself) who are debilitated from their anxieties, depression spells, mood swings, what have you. There are also many people with illnesses such as these who can cope very, very well with them and function, dare I say, normally, in society.

Those of you lucky ducks who don’t suffer from a chronic disease or illness, here is a sneak peak into my life living with major depressive disorder, agoraphobia, severe anxiety, dysautonomia, and postural orthostatic tachychardic syndrome. Please note that not everyone with these illnesses experience the same symptoms, whether it be frequency or severity. For more information on chronic illnesses and diseases, please see this link: http://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

I suppose I could be a smartass and say that it all started when I was born, but it would be truthful. Nobody really knows why, but, when I was born, I didn’t immediately cry. There was a theory floating around that my brain was starved of oxygen for those few, short seconds and that may have caused some damage. They think that might be why I have NLD (that’s a different story), but brain scans have shown no damage to white matter in my brain. Could have caused the depression and anxiety, but these come with NLD as do many of the symptoms that come with dysautonomia. In other words…after literally hundreds of different batteries of testing, nobody has an f’ing clue why I am stuck with this long list of horrible illnesses.

On a good day, I wake up at almost the same time every morning with a mild migraine and take my medications, including two antidepressants/anti-anxiety, birth control for extremely painful menstruation, salt pills, Lyrica for chronic pains & seizures, which only takes the edge off, blood pressure pill to make sure that I don’t faint when I’m standing up, 300 mg tablets of antihistamine for the mast cell disease, and a prescription strength pill to help with my “baby burps”. Then, I go and attempt to use the bathroom without a catheter, keeping my box of supplies at reach just in case I need to self catheterize, brush my teeth, attempt to get my 5,000 steps in with my puppy and, maybe, go to the barn and ride Miss Dezzi if I’m even up to it, to get in my 3x a week exercising.  I usually end up having muscle spasms in my belly until I finally admit defeat and lie down for a few hours, I think these are from fatigue. Doesn’t seem like much, does it? Keep in mind that I must be ingesting AT A MINIMUM of 3 liters of water, which results in my bathroom visits returning to 20x a day. I also have to keep replenishing my salt intake, even after taking my salt tablets 4x a day, so I can come close to functioning. I usually round out the day either finishing up a sketch/painting/playing World of Warcraft, then I eat dinner, shower, brush my teeth again, up until at least 10 so I can take Isla outside two more times, bladder pill, 2x salt tabs, Lyrica, 300 mg antihistamine, heartburn pill, and my last blood pressure pill. Usually, pass out by 10:30 lol.

On a bad day, I have at least 3 “POTS attacks”. PLEASE NOTE THAT, JUST BECAUSE YOU HAVE SIMILAR SYMPTOMS, DOESNT MEAN THAT YOU HAVE POTS! These include:

  • Painful muscle spasms,
  • Difficulty swallowing,
  • Migraines,
  • Intense body pain,
  • Bladder spasms,
  • Bladder leakage,
  • Bad spells of depression,
  • Extremely debilitating fatigue,
  • Fainting at least once,
  • Losing control of my kegs, resulting in an even more difficult time walking and standing,
  • Difficulty talking, especially after an episode ends,
  • Nausea/vomiting,
  • Regurgitation from acid reflux

The list goes on, but I think that you get the point.

A majority of the fighters of chronic illnesses struggle with a vast range of symptoms, most of which vary between severity and frequency, depending on the individual. I know for me, my symptoms get worse when I’m tired, dehydrated and not following my medication regiment. Some days I can tolerate being on my feet for more than an hour, and other days I faint after being up too long. Some days I can ride my horse for a decent amount of time, doing a great routine, other days I can’t be on her for more than 20 minutes without feeling like I’m going to pass out. But, like I said, everyone is different.

I hope that someone found this blog to be informative. If you did, please let me know down below!

I’m sending all of my positive vibes ✌🏻

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