But you look fine.... The perks and pit-falls of Invisible Illness

Living with an invisible illness can be both a blessing and a curse. An invisible illness or disability is one that can not be "seen " by looking at the person with the condition. The fact that most people can't tell that I am sick is pretty refreshing sometimes. It's nice to be able to leave the house and not be looked at as the sick girl. The days that I am able to do a little something with my hair, throw on jeans and a cute shirt, and a bold ,bright lipstick I feel like my old self again. These days are nice because no one knows I am sick, there is nothing to give it away and no reason to bring up a long drawn out conversation about illness.

On the other hand it can be very frustrating at times. Since I look completely healthy people don't understand how bad I may be feeling at that exact moment. The chatty lady in the bank line in front of me has no idea that I am seeing stars and on my way to hitting the floor and causing an unwanted scene.The most frustrating thing is definitely  when people stare when they see me in a wheelchair, like I am the lazy girl who wants to use the motorized cart at Target. Ummm ...hello I'd much rather be driving my Camaro than this bright red cart that makes beeping noises when I back up haha. Friends that I once went out with have said things like " you look so good now. I'm glad your better. When are we gonna go out?". Its hard to explain that even though I look fine I am still battling a chronic illness especially when I know their intentions are good.

I think the most important thing to do as a friend or family member is to avoid assumptions.Just be there, and if you aren't sure how we are feeling just ask. Most people with chronic illnesses know their body pretty well and know their limits. If you ask us if we are feeling up to a certain activity we will be able to give you an honest answer. I can't speak for everyone but its a lot easier for me to be honest if you just ask if I'm able to do something. If you assume I'm fine and able to go somewhere or do something I'm more likely to not say anything and try to  push through which eventually ends in me feeling worse.I am the first to admit that you can't really have it both ways. Either I look fine and avoid all the questions or I get misunderstood for looking too normal.Can't have the best of both worlds but a girl can dream can't she ?! 
As a rule of thumb: Just Ask and I will share :)

After writing this post I came across a website that is extremely informative . I would encourage you to read it . As a chronically ill person , it has a lot of information on how to discuss touchy topics with family and friends. For those of you that love  someone with an invisible illness there are postings that may help you gather some more information and insight on what its like to live day to day life in their shoes.http://invisibledisabilities.org/

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What is Dysautonomia? What is P.O.T.S? Is it the same thing?

       

When I was diagnosed with P.O.T.S I had know idea what it was. Even as a nurse, I had never even heard of the condition let alone know what the acronym stood for or what in the world I was in for. P.O.T.S is a much shorter and less complicated way of saying Postural Orthostatic Tachycardia Syndrome. So lets break it down here:

Postural:is a change in position
Orthostatic: related to or caused by standing upright
Tachycardia: a heartrate above normal
Syndrome: used to describe a group of symptoms caused by a medical condition

So basically its just a big fancy way of saying that your heart rate shoots up way high whenever you stand causing a bunch of symptoms. P.O.T.S is a type of Dysautonomia or a syndrome that is caused by your Autonomic Nervous System not working correctly. The Autonomic Nervous System is kinda like the control center of your body . It is responsible for controlling your heart rate, digestive system,blood flow,temperature regulation, thirst and urination and many more functions. Think of your body as a computerized machine. If one simple wire has a short then the entire machine will not work properly. This is basically the same concept in people with Dysautonomia. Our bodies control center has been shorted out and none of its wires can send the correct signals out causing problems in each body system.

When a person with a normally functioning Autonomic Nervous System stands up the blood is pumped throughout their body and there is not much of a change in blood pressure or heart rate, enabling everything else to work right. In someone with POTS or any other form of Dysautonomia stands up we encounter all types of problems. To be diagnosed with POTS your heart rate must either increase by 30 beats per minute or more or be 120 beats per minute or more within ten minutes of standing, every time you stand.

• Our arteries and veins are constantly wide open so when we stand up instead of the blood pumping throughout our bodies like it should it all pools to our feet
• Our heart has to work extra hard to pump the blood from our feet to where it is supposed to go . This causes Tachycardia or a high heart rate
• The lack of blood flow to our brain causes dizziness,difficulty finding the right words, trouble thinking, memory issues,impaired concentration ,extreme fatigue,problems sleeping, exercise intolerance, pre-syncope(near fainting) and sometimes we pass out .Hence the blog name Fabulously Faint 
• Poor perfusion to organs can bring on symptoms such as  temperature intolerance, icy cold extremities,headache,muscle weakness,chest pain,shakiness,and trouble breathing
• Autonomic Dysfunction may cause abdominal pain and chronic nausea and vomiting
• Since our ANS doesnt work we often have electrolyte imbalances. This coupled with excessive urination can cause chronic dehydration so many POTS patients get IV fluids on a regular basis ( I get 2 Liters of fluid through a chest port with the aid of a home health nurse twice a week)
• We also encounter  adrenaline surges which cause that anxiety feeling that you get when you are scared or injured. The shakiness, trouble catching your breath, chills,hot-flashes,a nervous feeling

It is important to know that there are varying levels of POTS and Autonomic Dysfunction. While some people get dizziness while standing but are still able to work, go out, and go to school others are completely debilitated and need feeding tubes for digestion and wheelchairs every time they get out of bed. Most people are somewhere in between. Hopefully this helps you understand what POTS is and how it can impact a persons everyday life.



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