Bad Day

Monday, Monday! Today, I am living in a funhouse and not in the good way. Do you remember what it is like walking on the floor in the funhouse? The floor is moving - concaving in and out. That's how I am feeling today every single time I walk! I am fine as long as I don't move and I mean DON'T MOVE! I am sitting on the couch right now with my laptop - moving my fingers and head but that's it. And I won't be able to type for very long. But the second I stand up, everything goes haywire. I am instantly dizzy, light-headed, severely nauseous, and have no energy. Today is a bad day - a really bad day. Yesterday was a bad day but I was able to move somewhat but that is impossible today. My neighbor came over to take my dog outside because there is no way I can do it. My husband got me a drink and something to eat before he left for work but he is gone until late and so are my neighbors. Somehow, I will need to find the strength and energy to take my dog out once again, get myself something to eat and drink again, and will have to go to the bathroom sometime again today as well. I will be crawling to all of these places as walking is just not possible on days like today.

A girl who has POTS said she has learned to accept her POTS as a blessing. I am not there by any means yet but am looking forward to the day when I can embrace this syndrome and all of the things it has taken away from me. One spoon at a time, it takes away my life until I will be left with no spoons. I have always said that I didn't want to live very long but, as always, be careful what you wish for because I won't live long. I'm not dying but I am not living till my 90's. I am certain I will beat my husband to the grave - a thought he hates and I take comfort in. That's what POTS has done to me. I'm 30 and thinking of death.

Hating my POTS now,

Kari

Day One

Today, I am starting my blog, which is something I have been saying I was going to do for weeks. But as we all know, we love to say we are going to do things but doing them is another story. I am a 30 year old married female who lives in Plano, TX. I have POTS - Postural Orthostatic Tachycardia Syndrome - try saying that really fast to someone! Basically, I have a dysfunctional nervous system. It just doesn't work the same way other people's nervous system does. My body can't handle gravity so every time I stand, my heart rate shoots up 30 bpm or more. My resting heart rate is about 95 bpm so when I stand it can shoot up to 125-222 bpm. Because my heart is beating so fast and my blood is pooling in my legs, I become dizzy, short of breath, lightheaded, nauseous, tired, hot, and very weak. If I don't sit down within about 4 minutes of standing, I will more than likely pass out. I didn't always do this but over the past few years, my POTS has progressed into what it is now - a debilitating syndrome. Walking makes it worse because with each step I develop a more intense headache. By the time I sit back down, I feel as though I have just ran a marathon instead of going to get a glass of water. I'm not even sure how this blogging journey will go as staring at a computer screen for long periods of time make me really dizzy and make my speckles come out. My speckles are little squiggy lines I see sometimes. I can see everything clearly but everything just has sqiggy lines in front of them.

I don't want anyone to think I hate my life because I don't but I do want to let everyone know what it is like to live with a chronic illness and I just happen to have POTS. It is fairly new to the medical world so if you haven't heard of it, you are not alone. Most of the people I encounter have never heard of it - even my PCP! Just like with everything in life, there are ups and downs to having POTS and it's all a matter of how you look at things. I hope to educate people on POTS so they can see how difficult it is for people with POTS to just do ordinary things. But that doesn't mean we can't do them! I hope to learn a lot myself along the way, not just about POTS but also about me. So, thank you for taking this journey with me. I look forward to seeing where it will go just as much as you do!

Till next time,

Kari