Our Lives

25776-03_-_Amedeo_Modigliani_-_Ritratto_di_D_die.jpgSo many people say things like, “I wish I could stay home all day and watch Netflix.”  They get to go to their 9-5 jobs, and then come home and do WHATEVER they want.  A chronically ill person, is sick (aka their job) 24/7!  How would it feel to be at work 24 hours a day?  That’s what it’s like to be sick.  To work a 24 hour job while feeling like you have the flu.

I noticed sadly when reading the groups on Facebook, how many people there really is who has no one in their lives.  It disgusted me to see how many POTS patients, had families, who thought they were making it up and just being lazy.  Or the ever running depression or anxiety excuse.

We do get anxiety and depression though.  Our bodies are running 3 x’s faster than a healthy person, and our adrenalin levels are generally soaring, especially so when we are sick.  So our bodies are literally in fight or flight mode, even at our best.  Of course we are sad too.  We are sick!  There is something wrong with someone who is okay with being chronically ill.  Sick of being sick.

I am lucky to have my immediate family who believes my POTS is an actual debilitating health problem.  They couldn’t tell you what POTS stands for if their lives depended on it, and constantly ask me to do things that are crazy for a potsy to do, but that’s just lack of choosing to learn about it.  I realize it could be a lot worse.

I live on my own.  I have a PSW (personal support worker) who comes to my apartment once a week to help me with any house keeping or meal prep I need help with.  To her it is easy, but to me it’s the difference of getting to live in a health environment.  I would be lost without her help each week!

I also have a Peer Worker, who comes once a week and takes me out for any errands I need to run.  She helps me get my groceries, takes me to get blood work, pet food, etc.  Anything I need to get out and get done.  Since my POTS causes me to faint, and I will collapse very easily from weakness, my Peer Worker is essential in case I get to sick and need to go home.  Which happens a lot.

I’ve been getting a lot of comments and questions from friends and family members of someone with POTS, and kudos to you all!  The fact that you want to learn more about the illness and how it effects the person you care about, that you want to understand and help in any way you can.  Just knowing you are a support system who believes and truly cares about us is exactly what we need.  We don’t always need someone to come over and do stuff for us, but knowing that you happily would if we needed you, means so much more than you’ll ever realize.

Don’t give us doctor advice, or try to push us to do more.  Remember, when we are going for a walk, our bodies are reacting like we’re jogging beside you.  Life and functioning is exhausting, and we just want you to be there.

Take Care.

Ash,

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