Wish you were here...
Updated: Jul 7
It's been a long time since I have written on this blog. Years, in fact, and so much has changed it would make your head spin. Chronic Lyme Disease is no longer the big, bad enemy that I face every day. Little did I know, there was a bigger, more fierce demon hiding in the shadows just waiting to take over my body. It goes by a silly set of letters but don't be fooled, it steals your life. POTS (postural orthostatic tachycardia syndrome) has ended my life but unfortunately, it left me breathing and trapped in this body, still stuck on this earth. Read on...
This disease is part of a class of diseases called dysautonomia. That basically means your autonomic nervous system, the part that controls everything you don't voluntarily do (like your heart rate, your sweating, your regulation of your vitals when you go from lying down to standing up, your "fight or flight" responses)... well that part of your nervous system just doesn't work anymore. So, the bottom line is POTS patients battle super fast heart rates just because they stood up from bed. I mean going from 80bpm to 160bpm just because we stood up.
In my case, I have a 3-5 minute window of time where the symptoms of that tachycardia slowly start to creep up on me if I remain standing. First, the sweating comes and feeling really hot. Then tremors and being clumsy. Then abdominal pain and I start to get random cramping of muscles. After that I can expect to get foggy headed followed by vision changes and that is the final warning that if I do not either lie down, get cool or slow down my heart rate, passing out is next.
I am fortunate that I have such a warning system. There are POTSIES who just pass out with no warning whatsoever. One minute they are fine and the next, **BOOM** on the floor. Pretty dangerous. So, here's the major life problem...I have had to lie flat for the past 6-7 years. Just think about that for a minute. Not sitting in a chair, not a walk around your house or outside, lying FLAT on your back for years. Could you do it?
I eat in bed. I sleep in bed. I watch tv, play games on my phone, cry, suffer and pray for it all to end in my bed. I spend every single moment of every single day in.my.bed. I am in hell. I am literally trapped in this body because my heart won't let me stand up.
On a good day, I can make it to the kitchen to get my own drink then rush back to bed. There are boxed snacks by the side of my bed because I can't stand up long enough to cook for myself. Looking at these four walls has become my prison.
I can hear you out there, "Well there MUST be something they can do for you? Some medication? Some treatment?" The answer would be no. All we can do is drink massive amounts of electrolyte replacement fluids, increase our salt intake (5 grams/day!), take beta blockers to slow down our heart rates and go on disability because your life as you knew it is over. It is also a good time to invest in shower chairs, walkers and wheelchairs if you don't have them because you WILL need them.
As the disease progresses, showers will be a thing of the past too because 1) you can't stand up and 2) you can't tolerate heat because it increases your heart rate. Also, you can forget about ever having that morning cup of coffee ever again. All caffeine goes out the window. Anything and everything that brought you joy will cease to exist.
As the years go on, everyone will drift away and you will find that only a handful of your truly best friends still check up on you with occasional phone calls. Everyone's life moves on but you are just the forgotten lump in the bedroom at the end of the hall. Your money runs out and eventually you don't even keep track of the days anymore. What's the point?
Is it sunny or raining? Who cares, I'm not going outside today. Is it a holiday? Who cares, I don't have the strength, money or ability to even go celebrate it in the living room with my family without having to be flat on the couch. Did another year pass? Who bloody cares because it won't be any better than the last 7 have been. It only gets worse. Why did I fight so hard for 5+ years to beat Lyme, only to get stricken with something far worse??? I will never understand.
I know that blog posts are meant to encourage those of you who are out there fighting illness but truth be told, even the authors struggle and I am not a liar. I haven't written for years because they have been really crappy years and I didn't want to bring you down. Maybe I was wrong to do that. You deserve to also know how really awful things can get when you are living with chronic illness. It is not all wine and roses but for whatever reason, this is the hand I was dealt.
So, from here on you will hear a lot about living with POTS. No, it is not Chronic Lyme Disease but it is still an invisible illness that is now my cross to bear. I will be LymeLens for life as the Lyme caused the POTS and somehow I managed to get into remission from that horrendous disease. So I will always hold all Lymies close to my tachycardic heart as I fight this daily battle with POTS.
Wish you were here. Wish anyone was here. This is getting lonely and tedious...