Happy anniversary to my faulty immune system!
Today marks one full year of officially having lupus. In light of that, there is a part of me that wants to drown my sorrows in a 2L bucket of ice cream, but there is also a part of me that wants to throw confetti in the air and jump with joy to celebrate finally figuring out what the hell is wrong with me. It’s funny how something can be such a positive, life-changing event while also being such a crappy, life-changing event. So I guess it’s safe to say I have mixed feelings.
Today is kind of like New Year’s Day for me, if it were normal for the start date of a year to be measured by when a doctor finally decides why your body started attacking itself. Most people spend New Year’s making resolutions for the year to come. If I were to make one resolution for year two, it would be this: have considerably less lupus. But because I can’t predict what the next year will look like for me and dwelling on that makes me feel nervous and sweaty, I will instead reflect on some of the things I learned during my first year with lupus.
1. Life sucks and then it gets better and then it sucks again and then it gets better again.
When you get diagnosed with lupus the doctor should hand you a pamphlet titled “Have fun making concrete plans for the future, sucker!” It’s obviously hard to maintain a routine when you have an unpredictable autoimmune disease. Even the time I wake up in the morning has to change constantly depending on how lupus-y I feel on any given day. Sometimes I can jump out of bed like a young spring chicken and can be ready in a flash. Some days I hit the snooze button a couple times and then slowly saunter towards the shower. And some days I hit snooze 15 times and need to take breaks while drying my hair because drying my hair is the hardest activity in the world. Some days going to the office and working is a breeze and some days I end up in the hospital on an IV and sleep all day. Some days the only thing I have the energy to do is nap for 13 hours, and some days I am such a ball of energy that I’m probably exhausting to be around. I’m sure you’re sensing the pattern: there is no pattern.
Not knowing how you will feel on any given day or even during any given hour makes pretty much every aspect of life that much more difficult. It also makes it really hard for people to understand your illness when one day you seem super healthy and the next you look like the Crypt Keeper. I definitely get strange looks when I skip into a convenience store on a Sunday and then limp into it using a cane on a Monday. I wonder if the guy who works there thinks I’m some sort of con artist like Steve Martin in Dirty Rotten Scoundrels, just less funny.
I probably thought I would have the hang of it all by now, a whole year later, but that’s certainly not the case. I’m not sure if this is something anyone can ever really get used to. Lupus definitely keeps you on your toes (except the days when your toes hurt too much to stand on of course).
2. Being thin is really difficult when you have lupus, and that’s okay (even if most days I don’t think it’s okay).
It’s really hard trying to maintain a convincingly athletic build when you are neither an athlete nor someone who can actually walk up a flight of stairs most days. I’ve battled all year with the desire to be active and the desire to be able to use my legs. When physically possible I do yoga and go for walks or hikes, but that usually happens in spurts of about 3 weeks followed by spurts of about 3 months of having to use my extendable back scratcher to reach the remote on the far side of my coffee table. And then there’s the evil prednisone which I end up having to take several times a year which just packs on the pounds and makes me want to eat entire pot roasts on my own. I’m pretty sure hell is real and it’s a high dosage of prednisone. It gives me severe mood swings and the most intense food cravings. There are so many medications for lupus symptoms that have weight gain as a side effect. So couple that with the inability to exercise on a regular basis and I’m saying goodbye pants that button up and hello to super stretchy leggings.
The weight struggle is real and will probably be one of my biggest struggles in the future. I’d be lying if I told you there aren’t days where I’m just sitting in bed eating chocolate and staring forlornly at pictures of super thin, 21 year old Lisa wearing tiny tube top dresses. It seems like a really shallow thing to be so concerned about, but sometimes it is just a very visible reminder that I am not in full control of my body. Curse you, autoimmune Gods!
3. It’s important to pay attention to the food you shove in your mouth.
There are still days when I am my own worst enemy and I eat mini eggs for breakfast (like yesterday – which was Easter so it doesn’t count) but since my diagnosis I have been learning what food makes me feel better and what food makes me feel like I’m a 95 year old who has been run over by a truck. Eating junk food and then taking a Flinstones vitamin just doesn’t cut it anymore. I have to eat a balanced diet with as little sugar as possible and my god it’s hard. I didn’t realize food would have such a big impact on my disease until a lupus flare ended up triggering a 2 month long anaphylactic nut allergy for me and I had to spend months closely examining everything I ate. It was rough. I keep wanting to fully cut sugar out of my life and blog about it but I know each blog post will be the same. It will say “Dear Blog, I hate you, I hate everything, I hate everyone.” So instead I’ve been trying to cut back a little here and there.
4. I have AWESOME people in my life.
It didn’t take getting diagnosed with lupus to realize that I’m very lucky when it comes to the support system I have. I already knew that I had a wonderful boyfriend, family and amazing besties. But going through something like being diagnosed with a debilitating illness can serve as a great test for relationships. When you tell a significant other that you’re the kind of sick that isn’t going to get better after a tea cleanse and a round of antibiotics, it could really go two ways. They could choose to be a complete ass-hat and leave you or they could choose to be a decent human being and not let that get in the way. My boyfriend chose not to be an ass-hat. Huzzah!
When I’m getting interviewed, or if I’m just having a chat with a friend and pretending it’s an interview because that makes me sound more famous, I am often asked how lupus affects my relationship with Boyfriend. And the answer is usually that yes it does affect it, as in we can’t ignore that lupus is a big part of our life because one day things can be all fine and dandy and the next we could be at the hospital because I’ve developed a new symptom, we just don’t let the disease dictate our relationship. I like to think that being faced with a tough disease like lupus makes it easier for us to not sweat the small stuff, because we’ve already been through lots of big things together. But that probably gives us too much credit. Mostly we just like each other and lupus has nothing to do with it.
I’m also super lucky to have wonderful friends who don’t let lupus get in the way of being besties. I know a lot of people with chronic illnesses find it hard to maintain friendships because once your social life starts taking a beating friends might not want to stick around for the long haul. My friends don’t really give a shit if I can’t hang out some times because I’m sick. They are good at bringing the hanging out to me when I don’t feel up to leaving the house, or just letting me know they are there if I need anything. They are really great at balancing my need for support with my need to be surrounded by sarcastic assholes who make fun of me for being sick. I’m so blessed.
4. Fatigue is the worst.
Some people climb literal mountains like Everest maybe once during their whole lifetime, while other people climb metaphorical mountains every single day in the form of getting out of bed and trying to pass as a functioning human being. I’m so good at the metaphorical mountain climbing I could get a job as a sherpa. Fatigue is exhausting (obviously), and while it was a problem pre-lupus it seems to be even worse since being put on all the meds. It’s a really interesting dynamic when you give a people-pleasing, over-achiever a debilitating fatigue that makes even the smallest task feel like a marathon. Every time I so much as walk up the stairs or fold some laundry it feels like such a great feat that I’m a little disappointed there aren’t ribbons or cheering fans applauding me. I might try to work more confetti and ribbons into my yearly budget.
5. Being open about having lupus means that strangers will constantly tell me how I should be living my life.
Telling someone you have a disease like lupus is akin to wearing a giant neon sign over your head that says “Please provide me with hours of unsolicited advice.” I’ve heard it all. If a celebrity has endorsed an immune boosting cleanse, I’ve been sent the link. If a clinic has opened in Mexico that uses dolphin semen to jump-start the stem cells near your liver which detoxes your blood supply which cures autoimmune symptoms, I’ve been given the 1-800 number to book a spot. I’ve been told everything from “you’re just not trying hard enough to feel better” to “lupus is just lyme disease and lyme disease is just in your head.”
I knew being so open about my illness would provide a certain amount of this laughable nonsense, but I didn’t realize I would get so much of it from people I actually know. It seems like every acquaintance I’ve ran into since my diagnosis has read the same newsletter titled “How to react to an acquaintance being diagnosed with a chronic illness,” and the only option listed was “tell the diagnosed about your sister’s friend’s college roommate’s cousin who had that same disease and felt better when they stopped eating bread.”
6. I’m tough as nails.
Every time lupus knocks me down I more or less get back up and keep going. I am Rocky. I am the Disney version of Hercules during the training montage. I am Daredevil and Batman and other cool super heroes. All those anthemic songs about taking a punch and getting back in the ring are about me. Stronger by Christina Aguilera? That’s about me. Fight Song by that girl who sings Fight Song? Me. Eye of the Fucking Tiger? Me. Hurricane by Bob Dylan? That’s a protest song about the imprisonment of Rubin “Hurricane” Carter. But Rock You Like A Hurricane by Scorpions? Yeah, that one is about me.
During my first year of lupus I have semi-successfully managed to balance having a debilitating disease, a full-time job, volunteer work, freelance writing, an awesome relationship, a sort-of social life, a side-splitting sense of humour, an awe-inspiring humility, and a very long “watch again” list on Netflix. Sure lupus makes me feel weak sometimes, but for the most part I feel like a warrior. Screw you, lupus! I’m a strong independent woman!
It has definitely been an interesting year. Lots of ups and lots of downs. And I’m not just talking about my bathroom weight scale (ba-dum tshh). I’ve learned some tips to help manage lupus and lead a more
fulfilling human-like existence, and there are some things that I’m still awful at (like pacing) that will probably take a little longer to grasp. Luckily I recently started seeing this awesome new doctor who I can talk to openly and without getting so nervous that my mouth gets dry, so I like to think things are looking up for me in the ole disease department.
Now excuse me while I go listen to my “Uplifting Indie Motivation” playlist on Songza to help me get through the day.