Despite becoming ill at age 14, I have been very lucky for the most part. Until just over three years ago, I was still extremely active, I had at least two jobs at any given time, plus any singing gigs. I was able to have fun with friends, and although my health was always a complication and prevalent, it wasn't quite as distracting.
Over the last three years, a few things have changed. It's not that it's particularly horrible - because it could always be worse, and I am still happy - but it HAS been distracting. I cannot eat or drink anything without several different scenarios running through my head. I have to have several backup plans and exit strategies and I am always thinking, at some level, about how any small decision may affect my health.
Even while unpacking a suitcase, deciding between miniscule movements can mean the difference between being inconspicuously nauseous or being doubled over, dizzy, and about to vomit. If I have help, if I sit on my bed, organize my clothing beside me, and have someone else help me and actually put them away in the drawers I specify, this saves me more energy than I can properly explain.
So when I wind up hanging out with friends, my disposition may seem quiet or even stand-off-ish, but I am usually simply distracted by, and trying my absolute best to hide, the pain.
This weekend, not only was I energetic enough to actually attend a get-together with friends, but for whatever reason, I got a break. A one-night pass! Nothing I ate seemed to make me feel worse, and I even had a bit of wine without any negative reactions.
I started relax.
I started to be able to focus on conversations and the present moment instead of assessing my body's level of illness.
The more I relaxed, the more I had fun, the more present I could be.
I did not have to 'check in' with my illness constantly all night. I didn't even spend much of the night going back and forth to the washroom.
I was able to really listen to the music, let loose, have a few drinks, even play a game!
And not only did I not feel ill, but (so far) I still have yet to 'pay' for it like I have with other events over the years. It also doesn't feel like I will 'crash' within the next few days. It truly feels (knock on wood) like I may have been given a one-night pass.
This is the first time in over 3 years where I have felt like this and have had THIS much fun WITHOUT having to take medication in order to achieve that feeling. For whatever reason, I even was able to skip a couple of doses of medication, and actually partially forget about all of the possible repercussions of being social.
One day in 40 months of this feeling may be tough to wrap your head around... It might be pretty impossible to understand.... But I assure you that it IS worth it. These very rare days offer a certain amount of hope -> like MAYBE I will have more of these days after surgery or after new medications, or even once newer treatments become available in the future.
This also doesn't mean that I don't have a great life the majority of the time. My life is great! I am pretty damn thrilled with my life. I just have this continuous complication that takes up a ton of my focus, my brain power, my strength, and how I feel on a moment-to-moment basis.
My life is amazing.
My health is not.
But it could always be worse... And I am more than a little bit grateful for this surprising break.
I'm also pretty sure that I giggled virtually nonstop for several hours.
What a great feeling :).
Back to normal waking up the next morning, but no worse than a 'normal' response to a night out with friends.
I'm really glad that I got to share my 'night off' with some pretty fantastic people.