Hello, friends. Recently, we have endeavored on our blog, to bring life with a chronic illness to light, through our writing. Having lived with POTS for many years, I have learned that beyond the medical word and illness support groups, the good, the bad and the daily struggle of living with chronic conditions are not easily accessible to the general public and the humor and irony we daily face with our conditions are often stories that go untold.
I come to you from my bed, in my pajamas, in the middle of the afternoon. So far today, I:
1. Woke Up Before Noon (and didn’t need to nap, from exhaustion, 60 minutes after I woke up)
2. Brushed My Teeth
3. Was Able to Let The Dog Out and Not Come Face To Face With the Floor
4. Got Back in Bed and Did Some School
5. Was Able to Handle the Stimulation of Opening the Window and Letting Fresh Air in My Room (which means my body handled light, neighborhood noises and changing temperatures for about 10 minutes)
6. Sat Up In Bed While Doing School (something that probably doesn’t happen 50% of the time)
7. Remembered to Take The Right Handful of Pills At The Proper Time
Which leads us to the reason why I’m laying in bed, not doing school… You see, I’ve been feeling pretty crummy for the past month (in relation to past months, it’s all relative). For every day up, that I’m able to look “normal” and do “normal” things, I’ve been spending two days in bed feeling awful and a third day feeling half-way awful, which really balances out to all the way awful in the end.
Today was one of those half-way, good days! Which is awesome, however, while I may not feel like throwing up all day and am not counting carpet fibers every time I get up to walk, my brain is not fully on. This is called brain fog and for those of you who aren’t sick. Sorry, but the “forgetful brain fog” you get on blonde days, just doesn’t compare. Someday when it’s not a full on rabbit trail, I’ll elaborate.
Which leads us back to the handful of medications I successfully took this morning! To combat the fatigue and brain fog (aka brain inability to function), I’ve been put on a new medication, which is always fun (do take note of the sarcasm). Before I took the medication I was able to eat and walk, but not think or have energy, which doesn’t really work that well when you need to think critically for school all day. However, my new mediation may just be able to help with that! Which sounds great, however, it has side effects. Hopefully they will go away after a week or two, but in the meantime, I feel like the lady in the lab coat in “Meet the Robinsons” when she’s hyped up on the “Caffeine Patch.”
So, the big decision of the day was “Feel Like falling Asleep and Unable to Think” versus “Brain Turned on and Feel Jittery and Icky.” This is just great because either way, I’ll still be feeling sick and want to curl up and watch Netflix, because the choice is between “my brain not comprehending much” or “I feeling icky and nauseated.”
My sister, who also has POTS, just laughed with me as I described this predicament. Whatever my choice, I really can’t win. So I chose to start the new medicine today and hopefully it will help in the end by making me feel better, but as with all medications there’s no guarantee that, even if I do muscle through the side effects, I’ll actually feel better.
Now mind you, I’m not telling you all this to complain. I actually find the situation rather humorous. Added to all this irony, the plot thickens and I’ve taken a third medication for the nausea, one that I was trying to avoid because of it’s own side effects! Either way, in my half-well state, I just traded the half that did feel good to try and fix the half that didn’t feel good. And so it goes in the saga of finding treatments for a condition with no cure and treatments that work well in theory, but never work the same for each POTS patient!
Usually, I like to let my writing sit for at least a few days and come back to it with fresh eyes, before my final editing and then sharing it here on our blog. In full disclosure, I nearly decided to scrap this post. After finishing up the first draft, the humor of the “side effect” dilemma, inherent with most medications, just didn’t seem quite so funny after all. Just as the first draft was finished, the side effects I was writing about went from bad to worse and I spent the day feeling pretty awful, okay make that really awful. Already not feeling good from my illness, the side effects sent me into even more of a downward health spiral.
Quickly, I went from cautiously hopeful to discouraged. In my head I told myself something like this.
“I feel AWFUL! I can’t share a blog that’s upbeat and humorous about side effects and still be honest!”
Which brings us back to the original point of chronic conditions and why our stories just aren’t often heard. Yes, there is humor, but there is also lots of discouragement. And who wants to read about the discouragement of living with my illness? Don’t I need a happy encouraging bow to tie it all together with?
Often it takes a big picture view of chronic conditions, to find that encouraging thing to tie something together. Many times, in day to day of life, there isn’t much of that ribbon going around. However, I’m back here again, a week later and once again agree that, yes, there was humor to be found in this situation. It just took a little more looking and stepping back for a couple days, to find that humor again!
Life has many ups and downs and being chronically ill, well it’s makes the ride all the more like a roller coaster. Life can change on a dime, or as in this case, in the middle of a blog post. However, maybe this post is all the more truthful because of that. Yes, there is so much, that those of you who are healthy, haven’t experienced. Having a chronic health condition pulls and stretches you in ways you can’t imagine. It’s not something I can easily describe. In this case, I almost decided not too try, because there’s nothing super human or heroic about curling up and feeling awful while laying in bed all day. But it’s exactly that sort of thing that makes me see people with disabilities and chronic illnesses as the real life super heroes.
Most of the time, there aren’t huge accolades for the seemingly simple tasks or joyful attitudes we choose: attitudes that people have, despite having to face huge giants daily, attitudes that exude joy when the discouragement and pain should bring despair. Unless you live with someone, or are, the person that is facing health problems, the hundreds of battle’s these people face each day, go unnoticed and happen beyond the view of most people.
Hopefully, this blog gave you a glimpse of just one of many struggles people with chronic conditions face. Hopefully, it can be used to help shed light on the lives of those who are sick and help bring understanding to those who can’t see the battles we face each day. Hopefully, in the future, we can continue to share these stories and portray in words, the fears and doubts, as well as the joys, of POTS and conditions similar to it. Hopefully, we can be honest here, as we endeavor to truthfully take you along on our journey of living with a chronic illness.