These thoughts are what I think about on a daily basis, at least 10 times a day. Back in November, I wrote a post in this blog about how far I have come along since my first surgery 5 years ago. To look at me now, you would never know I ever got any better. To be honest, I think you would wonder why I ever thought I was better.
I have Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia International defines POTS as a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. For those of us without a medical degree, that basically is saying the elasticity in my vessels is not there to help push blood from my legs back to my heart, which means the blood pools in my legs and after so much time has passed then I will pass out. Usually, once I am flat on the ground and my legs are on the same level as my heart, I wake right back up.
To try and prevent one of my episodes from happening, I drink at least 130 ounces of liquids a day. I try to make sure a majority of those liquids have some sort of sodium in them because I also have to take six extra grams of salt a day. You know how people tell you to watch how much you salt your food? Ya, that isn't an issue for me because I need all the salt I can get. On top of the liquids and the extra salt intake, I also wear compression socks to help push the blood back towards my heart.
I was diagnosed with POTS several years ago. I ended up being referred to a specialist at Vanderbilt in Tennessee who performed a tilt table test on me to officially diagnose me with POTS. A tilt table test is where you get strapped down to a table and they tilt the table to where you are perpendicular with the ground. Essentially you are standing, but you are strapped down so that when you do pass out you don't fall down because you are strapped to the table to keep you up. During this test they take repeated blood pressure and heart rate readings. If your heart rate jumps more than 30 points then you have POTS. After all of this, I was put on medication and I learned my limitations for dealing with this issue. No one would know I had this particular issue, unless I fainted from pushing myself too far.
Like you have probably read from my other posts in this blog, I have other health issues. Every time I start having stomach issues, or any other health problems, my POTS gets out of control. When that happens, I know I need to go get checked out. Last spring, my stomach started hurting every now and then, but I just dealt with it and moved on. In the fall of last year, I reached my breaking point. I started going back to the doctor and doing the necessary tests to start ruling issues out and work towards a diagnosis. At some point, my doctor felt the next step for me was to go directly to the Emergency Room. He was worried about my kidneys and if they were working properly. Of course, the ER was much more concerned about all my episodes of passing out than they were with my kidney function. Because the tests they did ruled out any issues with my kidneys.
Fast forward to now, I am back in St. Louis living with my mom. I sleep in the same room as my mom, and rarely drive because my POTS is out of control and I no longer get the warning signs I used to get before I pass out. I rarely drive, because lets face it, that is just a hazard for not only me but anyone else on the road with me. I wear out easy too. If I have plans to go out at night, then I don't do anything during the day. I have to save up my energy to be able to actually put the effort into getting ready, and doing whatever the activity is and still make it home and be able to have enough energy to put myself to bed. I have always had to think through each activity I do during the day to ensure I have enough energy to actually get through my day; but, I was recently just told there is actually a good example for those who don't understand why I can't have a day full of activity. It is called The Spoon Theory. I encourage you to read this if you want to know the struggles of people living with a chronic illness, like me.
The point of writing this post, is not to complain about my issues. Because while I definitely am not the healthiest person on the planet, I know there are people much worse off than I am. I know that everything happens for a reason, and when this medical roller coaster started years ago I thought I had been given these rare medical problems to help shine more light on the rare issues that I was going through. While I desperately wanted to do this, at some point life got in the way. Once I was better, I just wanted to pretend like I hadn't had these issues and actually live a more normal life. The life every other 20 something year old gets to live.
The problem is, I have a chronic illness. There is no escaping it. It is something I will live with for the rest of my life. While I cannot change what I am going through, I can talk about what is going on with me. Sometimes all people need to know is that they are not alone in what they are facing. Sometimes, when going through anything (not just chronic illness), what makes things better is to know someone else out there gets it. So, here I am. Sharing my personal feelings, issues and anger about living with a chronic illness so that maybe I can help one person.
Each post I write, I will end with a silly saying or meme that is about chronic illness (sometimes specifically POTS related) that helps me get through the day...who knows, maybe it will help you get through the day too. Sometimes, all you need is a laugh, and while some people will not find some of these funny...those who suffer from chronic illness definitely will.
Here is today's:
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