I have returned from my trip to Minnesota and am ready to go back. Here are a few reasons why:
- My best friend in the entire universe is there and I miss him immensely
- It's hotter than Hades here and my air conditioner is broken
- I miss my boyfriend
- I'm kind of sick of being in Virginia/ West Virginia
- I want to see my boyfriend again
Those are my main reasons. I experienced one of the best weeks of my life heretofore, and it's kind of a drag to be back to the normal, boring routine. I'm planning to go out again around Labor Day, but that is just too far away for my liking.
We spent an amazing week together, complete with a birthday celebration, laughing-so-hard-you-pee-a-little game nights with friends, a double date, 2 trips to the Mall of America, a visit to the Science Museum of Minnesota, an improv show, some couple time in the park, many shenanigans, and much more. Needless to say, I'm feeling a bit deflated now. But like they say, "don't cry because it's over, smile because it happened."
Much to my surprise, my body was on its best behavior for the duration of the trip. Even the flight was tolerable. Now that I'm back, however, it has also decided to get back to "normalcy." That means insomnia from hell and pre-syncope on my first day at work yesterday. Pre-syncope is the term used in the medical community for "almost fainting," aka blurred/ tunnel vision, clammy skin, heart racing, shortness of breath, nausea, and everything else you experience right before a POTS faint. It's lovely. Really. Especially the part where you have to ask your boss for permission to leave after ONLY AN HOUR on your first day. And getting someone to come pick you up. Thank the Lord that I have loving family members who live close by and happened to be working from home that day! I should point out that the movie theater I now work at isn't even open and therefor does not have operational air conditioning yet, and they wanted me to come in an help clean, get the theater ready, etc. This poses a problem for heart patients, especially when the area is in the middle of a heat wave (it's in the upper 80s to low 90s). After explaining my situation, however, my manager was very understanding and wants me to wait to come in until the AC is working.
I downed almost 5 liters of fluid yesterday on my own. I should have gone to the hospital for IV fluids, but I prefer doing things for myself, dammit. I've already got a head start on the whole "Doctors make the worst patients" thing.
Also, the AC in my home is now on the fritz, so I've resigned myself to the basement. It's a happenin' place. Thank the good Lord for Netflix, Facebook, and books!
I've also been pretty optimistic about things, even when I feel like crap. I think it's a combination of more "good days," a great relationship with a wonderful guy, and the prevalence of sunshine. Oh, and also because of the kind words of my dear friend Maria, who gave me some pretty sweet props for the blog. :) You guys make me smile!!
I've recently discovered the joys of GIFs in the blogging world, so I thought I would share some with you, POTS style! I am going to tell the story of "The Journey to Diagnosis" with y'all; enjoy!
The first time your symptoms show up, it takes you by surprise and you're just like:
You blow it off until they start becoming more frequent. Then you decide to go to the doctor to make sure you're not dying. You are met with "Oh, it's just stress. There's nothing wrong with you." So you're like:
But then your symptoms keep coming back, and worsen. So you go back to the doctor, who tells you again that it's just stress, and you're like:
But you don't know enough to argue with him, so you just go home and deal with it. After symptoms continue, you start Googling. You find a few things that sound fitting, so you find another doctor to talk to about it. He tells you AGAIN that nothing is wrong. This process continues for months or years, and every time, you're like:
After dealing with incompetent morons for several years, you finally find a doctor who takes you seriously! And the only thing you want to do is:
The first time you hear the word "Dysautonomia," the sybtype(s) you have, and any of the medical jargon that goes along with it, you're like:
And:
Then you have to go to the hospital for testing. You go home and Google the horrendous things they want to do to you, and you're like:
You get to the hospital on the day of the testing, and they make you fill out a TON of paperwork. It's early and you're just like:
And more than likely, you'll have to fast for at least one test. If you're lucky, they'll feed you afterwards, but it's hospital food. When they bring a tray to you, initially you're like:
But then, when you open the container, it's like:
After waiting a few more hours in your luxurious "recovery suite," you get to see the doctor, and he FINALLY has a diagnosis for you!! Your initial reaction is like:
But then it's like:
You go home, happy to know what's wrong and with a treatment plan. You have hope that things will get better, and you walk around like:
But after a few months, nothing seems to be working and you're just like:
You go back to the doctor for a follow-up visit, and when he asks you how you're feeling, you respond with;
And even he's like:
So he sends you to the lab with some more test orders, and you're like:
But they come back negative, so you're both just like:
So he starts suggesting other medications, treatments, and causes for your illness, none of which sound very nice. You're like:
So you start trying out a bunch of different medications, and your body's all like:
And every time your doctor brings up another treatment plan, you're like:
But you follow his advice/ orders anyway, because he was the first one to take you seriously and you want to try to get better. Even if whatever he wants to do or try makes no sense:
But you're not a doctor, so you go along with it, like:
Meanwhile, why you're trying to find the cause of your POTS to start treating it better/ playing Russian Roulette with meds, your life starts to de-rail. Eventually, school/ work becomes something akin to:
And you're stuck there for a while. I am currently at this stage in the process, so I can't very well continue this part just yet. But I do plan to do more entries with GIFs about different chronic illness scenarios.
Comment below if you have a particular scenario you want me to address!
And what glamorous days I lead. In this post, I will detail my most enthralling exploits for you. My intent is not to inspire envy, so please - if you find yourself becoming jealous, close the tab. I wouldn't want to be responsible for inciting any reckless behavior. Only a few people were meant to live this life; don't take it personally. It isn't for everyone.
A Typical Day With Dysautonomia
This is what a normal day looks like for me:
7:00 am - Panic when the alarm goes off because you think it's a different day than it actually is and that you should have been up an hour ago. Courtesy of cerebral hypoperfusion, also known as "brain fog." Get started with tachycardia. This can serve as the morning workout, as the effect on the heart is the same.
7:01 - Realize what day it really is, turn alarm off, and reach over for meds. Upon noticing that they are not there, get up *carefully* and stumble drunkenly around the room, searching for my purse because I remember that I left them in there. Once again, courtesy of brain fog.
7:03 - Tachycardia now in full swing, just in time for Beta Blockers. Wait for eyes to adjust whilst a very large dog prances upon my tender feet to remind me that it's time for the morning walk. Silently curse taking the doctor's advice on getting a dog. Go to the bathroom and pee like a racehorse. Stumble out the door to walk dog. Pray the neighbors fail to notice my odd gait, and yell at the dog for taking me for a run across the yard. Tachycardia becomes exponentially worse.
7:08 - Manage to drag self and critter back into the house; feed dog. Sit down half way up the stairs to rest from the morning's exertion. Crawl the rest of the way to the kitchen, and make breakfast for self. Chastise self for making coffee, but forgives self with the assurance that it will improve mental and emotional state. Put milk in pantry and cereal in refrigerator. Notice and correct mistake. Eat breakfast while watching television and checking Facebook. Become very nauseous from eating and curl up on couch.
8:00 am - Continue Dysautonomia research for a family member and possibly for medical professionals. Finish coffee I was too nauseous for while eating. Gain new insight to disease/ symptoms, and question whether or not I am just really fascinated by the physiology or obsessed. Decide on "just really fascinated by the physiology," and convince self that it will serve a greater purpose once in medical school. Get up pee again.
8:30 - Put research aside to continue watching "The Office." Replenish body's depleted caffeine stores.
9:00 - Feel guilty for not getting actual work done. Get dressed. Do a few chores.
9:10 - Return to couch and collapse, exhausted. Curse when the need to pee arises yet again. Take care of business and continue watching "The Office."
10:00 am - Learn something exciting! Try to jump up in excitement, but remember that it could cause another fainting spell. Contain self. Continues research or school work instead.
11:00 - Do obligatory "workout."
11:30 - Become discouraged with lack of endurance, cry a few tears, and get over it. Remind self in good humor that this is why I exercise at home. Collapse on couch once more and contemplate life - and lunch. Fight dizziness, pain, nausea, shortness of breath, and every other symptom that showed up today.
11:45 - Try to stomach a small, very salty meal in order to reduce dizziness. Make nausea worse. Take more pills and fill up water bottle for the second time today. Rid self of more precious bodily fluids.
12:30 pm - Still recovering from lunch. Wave of dizziness and exhaustion comes from out of nowhere, but fight through it in order to get a shower.
12:35 - Cringe as the water hits skin. Once adjusted to the hot, piercing pain, marvel at the freak show that is my body, as my skin and nail beds turn blue in the warm shower. Contemplate phenomena for future contributions to medical science.
12:45 - Start blacking out. Pray to every known deity that I don't pass out and drown.
1:00 - Finish shower, lay down on bathroom floor to recover with feet up a wall or propped up on the edge of the tub. Open door for air and thank my lucky stars that no one else is here. For entertainment, watch as the veins in lower extremities "deflate," returning desperately needed blood back to where it should be.
1:05 - Attempt to assume upright posture again. Wait until initial dizziness passes, and wait the rest out on the toilet.
1:10 - Dress self whilst combating more dizziness, blacking out, nausea, and exhaustion. Pray again that I don't face plant at home... alone. Return to couch for proper rest.
1:15 pm - Blog, paint, read, or do more school work while waiting for body to return to normal.
2:15 - Do more chores and boogy down to swingy, 40s jazz. Carefully, of course. Then return to more sedentary work.
3:30 - Relive self and dog again. If weather and body allow, take a longer walk. Psychoses temporarily relieved by fresh air.
Evening - Spend with family or, if they are not home, with more work. Or Netflix. Or Pinterest or Facebook. Really could go many ways. Muscle down some dinner eventually.
Bedtime - Usually about 10:45 pm. Thanks to insomnia, a sleep aid is required for even a chance of getting some shut-eye. I typically awake during the night one time to several times and, if I'm lucky, stay awake ALLLL night, alternating between wide-awake and semi-conscious.
My days are also filled with cracking/ popping joints and bones, screw-ups galore (thanks to brain fog), and lots of other exciting "activities." Thankfully, I am not home or bed bound (on most days anyway), but there are MANY people with various forms of Dysautonomia who are. I can only understand a small piece of that frustration.
If you, or anyone you know, feels inclined to say to someone with a debilitating chronic illness, "Gee, I wish I could stay home all day and do nothing!", expect to be met with hostility. Oh yea, I just LOVE not being able to be out and about, doing whatever I want! I really enjoy not seeing my friends or going to school, or feeling like utter crap all day! NO. We have to stay home/ with a relative or friend so that we can follow doctors's orders: make sure we eat/ drink what we are supposed to, when we are supposed; we have to make sure we get enough exercise and can rest whenever we need to. Believe me, it isn't a choice and we aren't being lazy. With POTS, the effort it takes just to stand up is three times that of a "healthy" person. By the end of the day, my body has actually done a lot of work, and I'm exhausted despite having rested for a good portion of the day. Going out in the real world is an even bigger effort, and I'm sure hilarious to those watching me stumble around like a drunk. Leaving the house takes A LOT of preparation: making sure I wear the right clothes (have to dress for heat/ cold intolerance; may have to wear compression garments to prevent blood pooling), eating enough sodium, drinking enough water (and making sure I can get more water if I run out), getting lots of rest beforehand, and so much more. An impromptu outing isn't always possible, so don't be offended if w have to cancel at the last minute. We are often very symptomatic at home - imagine what it's like for us when we get out and about!And then there's the recovery. More rest, more fluids, more salt, more symptoms. BUT... to many of us, the preparation/ recovery process is TOTALLY worth it if we are using our energy to be with you!
Just livin' the tachy life... G-L-A-M, O-R, O-U-S!
Sydney ;)
I hurt a lot of people with my last post on Facebook, which was a response to the person who hurt me initially (see here to read about it). In hindsight, perhaps that should have stayed private. But it needed to be said. I have had similar conversations with these people face-to-face several times before, and to no avail. The insults, ignorance, and confusion keep showing up no matter what action(s) I take.
Repeatedly, you tell me to "let you know when I feel bad so that you can leave me alone." However, when I do, I'm "complaining."
You tell me that I dwell on my illness and love to complain about it.
You claim to feel guilty when I express what I'm going through.
I am constantly told to "let it go," "stop thinking about it," and "get over it."
GUESS WHAT!
I do what you ask me to and tell you when I feel bad. I'M SO VERY SORRY THAT THAT HAPPENS TO BE ALL THE TIME!!!! WELCOME TO POTS! That does NOT mean that I'm complaining. I feel like I'm damned if I do, and damned if I don't. I do what I can for you when I am able... is that not enough?
YES, I DO have a blog about Dysautonomia, and YES, I DO talk about it on Facebook a lot. NEWSFLASH: So do LOTS of other people!! It's how we deal. You want me to raise awareness, so that's what I'm trying to do. It's not "dwelling on it" or "complaining." And trust me, the only thing we would LOVE is to NOT have Dysautonomia! I wouldn't wish this on my worst enemy - I do not "love" it. I also have a life outside of my illness, which - OH WAIT, DOUBLE NEWSFLASH - is being currently impaired by said illness!!!!! Driving, education, employment, MY OWN BODY... Everything is affected! But I do my best to get out and enjoy the things I DO love, when I can. You know this because you have to drive me everywhere (DUE TO THE FACT THAT PASSING OUT RANDOMLY IS A PROBLEM WHEN IT COMES TO DRIVING). Again, damned if I do, damned if I don't.
I KNOW that as a parent, you must be heart-broken at not being able to help your child. I am SO very sorry that you have to go through that. I WISH I could take away those guilty feelings, because THIS IS NOT YOUR FAULT!!! Please try to understand that, and in NO way am I blaming/ taking anything out on you!! I just need to be able to openly discuss my experiences, and if you won't listen to me for feeling "guilty," then I will discuss it elsewhere (please refer to the above paragraph).
I know that you want me to live my life ABOVE illness. TRUST ME, I'm getting there!! But the fact is, life is hard to live when you have such an unpredictable disorder! I have no CLUE what my body is going to do from one minute to the next, so if you find this annoying, I SYMPATHIZE WITH YOU. I wish you could come up with another way to phrase that, because when you say "get over it" or "let it go," I take you literally. Sorry, but I tend to get a little upset when you think I can feel better just by changing my attitude. And yes, attitude plays a MAJOR role in disease process. But sometimes, I need to be allowed to be upset. Don't compare me to your problems, or to anyone else's problems. Every body is unique, and anger is a natural reaction to chronic illness.
I know my actions/ words were harsh and out of line.
I wish I could take it all back! Nothing hurts me more than knowing I hurt you.
I love you with ALL my heart!!
I realize that you have made countless sacrifices on my behalf, and that you do SO much for me!
I appreciate those sacrifices and ALL that you do for me, even when I act like I don't.
BUT...
I wish that you would acknowledge that you hurt me.
I wish that you would apologize like you want me to apologize - respect is a two-way street.
I wish you could see my perspective, and stop being so limited by how you think I ought to deal with my illness.
Even though I would NEVER wish this on anyone, I DO wish that you could experience a little bit of Dysautonomia for yourselves so that maybe you would understand where I'm coming from.
I'M SORRY!
I didn't mean to hurt you like I did.
I was in the wrong.
But to an extent, so were you.
Respect is a two-way street, regardless of your status in a parent/ child relationship.
