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Here's What It Takes for Me to 'Have Fun' While Chronically Ill

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So your friend with a chronic illness has rejected your party invitation… again. Or they’ve included a list of terms and conditions just in case they have to bail last minute. What’s up with that? Do they hate you or something? I booked a champagne brunch the other day for the boy’s birthday and thought, why not use it as a real life example to provide insight? Shall we go through the experience together?

Physical and Mental Preparation

I got lucky with this booking. It was only on one specific date, the prices were reasonable, and it had magnificent views on the 43rd floor! I was anticipating his happiness, which fueled my excitement. I checked the date again — perfect. It wasn’t around the “bad weeks” of my period, where extra inflammation occurs.

I started to keep a close watch on my INR (to monitor my blood clotting) using my blood test machine, and adjusted my diet to maintain an optimal range. If I was going to consume alcohol, I had to make sure that my blood wasn’t too thin, and this does not change overnight. Sometimes I need to avoid leafy greens for awhile to normalize it (you heard me right). I made sure that I had enough exercise, especially the day before the brunch itself. That always seems to help take some stress off my body from alcohol consumption. I braced myself for one to two weeks of downtime and possible pain, as alcohol and inflammation go hand in hand.

The Big Day

And so the big day arrived. I pricked my finger and checked my INR again — all good. Of course if my blood had been too thin, I would have stayed clear of the alcohol. My boyfriend did not force me to drink; it was my decision to celebrate with him. I took a sip of champagne to judge its effects. It was delicious, but I started to feel dizzy and ill after only half a glass. So I slid it across the table to the birthday boy, and switched to red wine.

I wondered where the inflammation would strike first; it is always a lucky draw. You have heard the word “inflammation” mentioned a few times by now. What does it mean in this instance? They usually appear as angry red swells that can clump up on any body part. I’ve had big lumps on my forehead before (who knew there were so many blood vessels between that flat patch of skin and skull?!). It struck like clockwork after two hours. The swollen wrist I had from the day before was now a bloated, unbendable chunk of meat. The muscles in my upper arms started to throb with aches, and I had mild vertigo.

A sudden wave of nausea struck me when we stood up to leave. Descending 43 floors wasn’t much fun. Thank goodness there was no one else with us, as I looked unglamorous squatting in my dress. I had forewarned my boyfriend that we might have to hop into a cab straight home after, and this was exactly what happened.

I passed out in bed the moment we got home, and this was just from 2.5 glasses of wine! I was experiencing nausea and swelling without any of the happy effects. That was a bit upsetting, especially after all my careful planning. If I am going to feel sick, at least let me have a bit of fun!

Post Event

I had ran through the possible scenarios in my head, but wasn’t prepared for the internal inflammation that occurred this time. It did cause me to panic a little, as my stomach felt bloated and swollen for days. I worried about internal bleeding, so I kept watch on all my vital signs and daily activities. I am not being paranoid, a chronic illness person doesn’t need much to sustain injury.

I spent the following day in bed unwell, and utilized whatever energy I had to make a simple stew for dinner. It soothed the stomach to my relief, as that was a sign that there were no blockages from gut swelling. I recovered after a few slow days, which was a pleasant surprise. I had been prepared for up to two weeks of discomfort.

What is the Point?

You might have been muttering expletives while reading this piece. Or you might be judging me now for what I did. Why would I even do that, especially when I knew the possible consequences?! Well, I do it for the exact reasons anyone else does — to have a good time! And I do enjoy getting involved in the “normal world” once in a while. It is pretty hit or miss with me when it comes to alcohol, so I save these wildcards for special occasions with my favorite people. On the good days, I actually have a lot of fun, although the downtime is the same. You can imagine the level of exhaustion a “relaxing” Friday night out might bring. The pain and fatigue might even last throughout the whole of the next work week.

Would I do it again? Of course! It’s fun and I get to bond with my friends in a different way. It just requires a lot of planning, and willingness to take some damage (not recommended during bouts of bad flares!). I have also decided long ago that keeping myself in a bubble isn’t exactly being alive either.

Am I advocating for you to go wild and party hard? Of course not. All I wanted to do was use a single experience, to illustrate the amount of effort it can take for us to socialize. “Casual” barbecues have cost me just as much energy. What I am saying is – have some fun if you can, your way!

To view the original post and more stories like this, visit: A Chronic Voice.

Originally published: August 25, 2016
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