Celebrating while Chronically Ill

St. Patrick's Day was just two days ago, and for the first time since I got sick, I celebrated it! "Celebrate" means something completely different now, and I quickly learned what my new limitations mean for me.

St. Patrick's Day was a big deal for me when I was growing up. My father was part Irish and grew up in an Irish neighborhood. My maiden name is an Irish one with its own crest and tartan. My parents wore bright green on March 17, we almost always went to an Irish pub for lunch, and we often stood in freezing weather to watch the St. Patrick's Day parade. To get in the spirit this year, I downloaded the songs I remember my dad playing in the car, and my Irish playlist is over an hour long. I have been singing Irish drinking songs since my early childhood. Being Irish is important to my family, even though no one seems to know where the original ancestor came from. Like a good legend or tall tale, he came to America and our clan continues here. My husband is half Irish, with a direct connection to the Emerald Isle. Both his family and mine celebrate our Irish roots.

In the days before I got sick, going out for St. Patrick's Day was a given. Even when our daughter was young, we would go to the neighborhood pub for lunch just like I did when I was little. I've had a bit more energy recently due to a new heart medication so I was excited to recreate some of my favorite St. Patrick's Day memories with my family this year. While it was enjoyable, there were some important differences now that I live with chronic illness.

1. Alcohol and medication: this one is the biggest one. Mixing alcohol and certain medications can cause harm ranging from decreased effectiveness to death. Now that I'm sick, I only have a few sips of alcohol on New Year's Eve, St. Patrick's Day and the Fourth of July. I admit, though, that this year I had half a pint and felt tipsy very quickly. I already have balance issues so being tipsy is doubly dangerous. This one is definitely something that I can indulge in very rarely and in very small quantities.

2. Festive food: Celebrations often involve food that isn't normally served. Holidays seem to have their own foods associated with them. I have a lot of gastrointestinal problems, and some foods make me sick immediately. Other foods are fine until the most inopportune time, and then they strike suddenly and vehemently. I have to be careful about what I eat, how much I eat and where I eat when I'm celebrating to limit problems like nausea or upset stomach.

3. Calming the senses: Sometimes (maybe most times) festivities involve sensory overload. Loud noises keep me from concentrating and give me a headache. Flashing lights do the same. Strong smells, itchy fabric, a cacophony of sounds and terrible lighting all conspire to ruin my fun. I try to limit them as best as I can, but I have no real solution here.

4. Dressing for the climate: Some holidays are in the hottest parts of summer, and some holidays are in the dead of winter. Lupus makes me photosensitive, so I have to be careful in the sun. I can't handle heat as well as I once could, either. I have circulation problems so I get cold whenever the temperature is below 74 degrees. I have Raynaud's Syndrome so my fingers and toes turn either white or purple and go numb when I get cold. I'm an extrovert who likes to go all out for celebrations, so if I'm going to dress up in the theme of the holiday, I have to dress is in layers. Cute, festive layers.

5. Rest and recuperation: Because I like to go all out for celebrations, I tend to overdo things and wear myself out. I try to rest in the days leading up to a big event so I can save my enengy. If possible, I try not to leave the house the day before the event and spend as much time in bed as I can. It takes me a while to get ready because of fatigue, so I have to plan out my day carefully. I will inevitably get caught up in the revelry, and while it's good for the soul, it's terrible for my body. I don't have the stamina to do things like I used to so I will get tired quickly and leave early. Once I get home, I will go straight to bed. I will probably be in pain for the next day. I will probably need several days of rest before I return to my regular schedule. My heart is almost certainly going to have palpitations and an erratic beat. All I can do is rest afterwards and remember the fun memories I made with my loved ones.

Celebrating definitely takes its toll on me. I put so much of myself into celebrating things, but it takes so much out of me. Some people think I'm fun, others just think I'm weird. I'm probably both. Regardless, I wish now more than ever to enjoy as many moments of life as I can, as fully as I can. As time passes I feel my body deteriorate. I mourn every new loss and limitation, knowing that some will never be regained. If I'm loud, if I'm in a weird outfit, if I'm laughing too much, it's because I want to squeeze every last ounce of happiness out of life. And if I'm celebrating with you, it means that you are the ones I want in my favorite memories, the memories that I carry with me through the rough times. You have helped me create my happiness, and that's something worth celebrating!