If surviving is what you want to call it. Did a thing yesterday, can’t do a thing for multiple now.
Chronic illness affects just about anyone, that’s the scariest part about it. It happened to me and it can happen to you, to anyone. It happened to me at 29, again at 30, then again at 32. I am young, but not too young for it. No one is.
Chronic illness puts a big damper on going out, especially as much or like I used to before being diagnosed with Rheumatoid Arthritis, Osteoarthritis and Fibromyalgia. Which sparked some pretty severe depression and anxiety in myself. Leaving the house isn’t always the easiest, on a daily basis when before I could for work and then a social life. This is especially difficult for me in the evenings when my symptoms tend to heighten with swelling, pain and fatigue I can’t push through. Even if I did nothing all day or made every attempt to be well enough to go out.
The vicious cycle of chronic illness doesn’t care about your favorite band you have tickets to see or your own birthday party, two years in a row.
Also timing of infusions, tests and treatments don’t always match up with fun events.
A compromised immune system might make me rethink the dive bars that I would always catch a cold after visiting or crowds who avoid showering. Think about the germs and my lowered immune system, it’s not worth the risk. I always keep hand sanitizer in my very small purse to avoid it hurting my arthritic shoulders. I try to avoid sharing my beverages, stay away from the slobbery kissy drunks and sharing my joints.
My thing starting from a very young age used to be going to heavy metal concerts, dancing the night away at local goth nights, swing, go go or burlesque dancing to rockabilly and psychobilly I would travel for certain bands or fests.
My first heavy metal concert was Metallica at 10 but it wasn’t until I saw Slayer and experienced my first mosh pit at 13 did I become truly heavy metal concert hungry and addicted. Although if you ask me Judas Priest is my favorite of all heavy metal bands, a tough choice behind Maiden and Sabbath. From then on it took chronic illness to stop me from catching as many concerts as I could almost two decades later. I’ve seen thousands of bands over the years, different genres, been involved in scenes far more than I like to admit. Music was my passion. In a way I feel chronic illness has killed that passion and it’s moved towards my health, advocacy and son. Arthritis sped up my maturation process.
Music was how I stayed active and social. I would get done up which would often turn heads, with energy to spare, even able to do a full days work the next day. I used to be able to handle a full day of work and a night out, involving drinking. Staying way up past my bedtime on a school or work night. But I could be ready to go work the next day, showered, on time. Coherent despite I might still have a faint amount of alcohol on my breath from the night before.
Strangers don’t know to not bump into you because you are in pain and have balance issues.
The older I got and more arthritic I got the more still I got at concerts. The comments of “you look bored” become an average thing about why I am still or constntly yawning. I have to keep in mind they can’t see what is inside. People would treat me differently if they saw an indicator. The only way for them to know I am chronically ill is for me to tell them and then it is often assumed I am seeking attention or oversharing. I look perfectly fine. Or the unsolicited advice to become a vegan who snorts these mushrooms from Taiwan will cure my ailment while shoving kale up where the sun don’t shine, it cured their twice removed aunt married into the family. The more you brush them off, they angier they get, especially with alcohol involved.
Preparing to go out becomes an all day thing when living with chronic illness.
The more active I am with my regular exercise routine (30 minutes on the elliptical several times a week followed by the sauna is my personal favorite) I find is the most beneficial thing to keeping me awake later than my five year old and able to hold sort of a social life. If I have a major event ahead of me I know I have to start exercising at least one week prior to it if I have been slacking and fallen off my routine while life typically gets in the way some days. With chronic illness and life it’s easy to have to miss a few days or weeks at a time but consistency is key. I try my best effort to keep breaks away from exercise to a minimum or replaced with being active in another way. Don’t use it? Remember you lose it.
I first decide, do I want to push through my illness to go out?
I try to take it easy all day before I can go to a concert or out with friends, without overdoing it to not trigger my fatigue or stiffness. If I exercise it will be in the morning and I will make time for a rest period. A nap is a really good idea so I maybe have a little extra energy for a late night concert. Of course with chronic fatigue even a nap sometimes won’t do. I have to make sure I keep moving enough throughout the day to not let fatigue and stiffness pile up. I have to make sure I don’t over do it so I don’t irritate my joints, I will more than likely have to stand most of the night, which can be rather painful and increase swelling.
I have to make sure I drink adequate amount of water as dehydration can make me feel worse. I try to eat healthy throughout the whole day or days before to avoid possible food triggers and flares. Sugar and gluten are the two I try to avoid the most. They tend to make me bloat, feel more fatigued or overall just not very good.
I need to make sure I take the appropriate pain medication and time it correctly, before any pain breaks the too painful threshold. I mostly take Aleeve or Tylenol Arthritis, if they at all do anything. Medicinal cannabis helps.
About the only time I drink energy drinks is when I am at a concert and I experience about the worst sleep possible that night but sometimes, a moment to forget we are chronically ill is so needed.
A ride or cab home is crucial. I do not feel comfortable traveling alone on transit late at night anymore nor do I have the energy and by the end of the night my pain levels are skyrocketing. Not lazy, fatigued, at that point speaking is difficult.
I plan to do nothing the next day or two. I gave up drinking years ago, it’s a fatigue hangover.
Concerts become self care for me. To remember I am still me, not just my chronic illness.