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 ;)
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