This post was submitted by “Kyri L.,” our first outside contributor to this blog. Kyri successfully manages “a cocktail of disorders” while holding down a full-time job at an IP firm, thriving as a free lance artist and leading a fulfilling social life. Kyri’s five tools for self care are excellent strategies for loving yourself while you are in the midst of treatment as well as maintaining your gains so that you don’t relapse. Thank you, Kyri for sharing your voice!
I’m writing this on a bad day.
Font size is set to 14, so I don’t have to squint to see my text. I haven’t gone to see an optometrist in a few years, and the fibromyalgia is making my vision a little unstable sometimes. I cried a lot today too, and my eyes are unhappy with focusing. I feel an anxiety attack crawling at the base of my skull. Thinking about chopping vegetables for dinner makes me want to lie down and nap for a long, long time.
It’s on these days, the ones where I break down and hope nobody notices, that it’s most important to focus on the positive and put on a brave face. You have to do that, when you have the miserable cocktail of disorders that I do: fibromyalgia and hypermobility syndrome, diagnosed in the last few months, and some older arrows in my side, Major Depressive Disorder, General Anxiety Disorder, Post Traumatic Stress Disorder, Irritable Bowel Syndrome, and some mild Obsessive Compulsive Disorder to balance it all out. These are things that influence me, that are part of who I am and how I live, but they don’t define me; I may struggle to stay on top, but the fact of the matter is, I win against this health-beast more days than I lose. I’m a champion for getting up every day, getting dressed, going to work. For going to each and every one of my appointments on time (as long as the subway is running smoothly). For trying again and again to find just the right way to dodge symptom bullets and sneak more productivity into good days. Not just a survivor, but a champion of my circumstance.
The best things in my self-care toolbox are as follows:
1. Humility. Being disabled is embarrassing, awkward, and hard. It involves telling strangers every day that I have limitations. But because I’ve accepted this aspect of my life, because I don’t cling to pride that will harm not just my mind, but my body, I’m able to reach out and get help when I need it. I ask for a seat on the subway each and every day on my way to work, and for that I get to save energy for more things I want to do. It was incredibly hard at first to speak up and ask for that help. It took me promising myself I would ask every day, even on good days, until it became a force of habit. You don’t have to disclose everything to get help, either. I usually say, “Can I have someone’s seat? I have bad knees,” and that’s enough. Maybe the stranger who gives me their seat is imagining I was an extreme sports junkie and messed up my knees being a total badass.
2. Forgiveness, of the self and others. It’s so, so necessary to be kind to yourself, to love yourself, but I think the best manifestation of those things is self-forgiveness. Don’t beat yourself up for missteps. If I didn’t brush my teeth today, that’s okay. I can always brush them tomorrow. If I forgot to send a card to a loved one for their birthday, I’m not a bad person. My illnesses just make me forgetful, and I’ll write it down next time. Forgiving yourself the mistakes you’d forgive of others is one of the single best things you can do to stay positive and on an upward path. One way I like to do this is to personify each of my issues into a dog. Sometimes the dog won’t do what you want it to, or even cause major problems, but it’s very hard to stay mad at a dog. It isn’t malicious. It didn’t do anything for the sole purpose of making your life miserable. It’s just in its nature sometimes. And that’s okay. You’ll run into people who don’t understand your illnesses, too. It’s better to forgive those people, even if they’re rude or even callous, whether they meant to be or not. Whatever they did might have been horrible, but it’s better to accept it and move onward. Holding grudges takes up mental space that you don’t have, and could very well make your health worse.
3. Prioritizing everything. I’m an artist, so this can be a hard one when I have five different creative projects bouncing in my brain all wanting to come out at once. The only way to efficiently use the energy you have though, is to decide what’s important to you, what isn’t, and ranking those on a day to day basis. It can be gut wrenching to admit to yourself that you might not get to reading that classic novel until a year from now, because other things are more pressing, but it keeps your life concrete and easy to manipulate later if things need to change. It makes it a lot easier to block out your energy, and know immediately what tasks you can abandon on bad days without guilt. Being realistic about what you can and can’t accomplish, and being up-front to others about those limitations, can take a lot of the stress out of your life.
4. Recuperation Day. Every weekend, usually on Sundays, I do almost nothing. I let myself sleep all day if I need to. I don’t get dressed. I don’t do anything that requires much concentration or energy. It’s a day for recharging, for fortifying myself for the next week. I know it’s there for me at the end of every week, so if Wednesday is really hard (today is Wednesday), I know I just have a few more days until I have no responsibilities except for listening to my body’s needs. This is one of the biggest things that got me through college to graduate cum laude. Scheduling in a day to do absolutely nothing helps keep my energy reserves from depleting entirely. Of course, you have to be stricter on yourself every other day of the week. That goes back to priority: in order to have Sundays off, you have to prioritize tasks to be done during the week ahead of time.
5. Talk about it! If you don’t feel comfortable being open to everyone about your struggles, find a few people who you trust enough to talk to and verbalize it. It really helps me put things into perspective and understand them better if I say it out loud. It’s best to find people who aren’t directly responsible for helping you, though, so they don’t feel an emotional burden from it. Online communities are great places to find people with similar experiences, or who are just willing to listen, and there’s very little pressure involved in the conversation. It helps me to listen to other people’s problems too. If someone is open to advice, giving it to them is something that makes my own problems feel a little easier to tackle.
The above is not an exhaustive list, but those are some core things that keep me going. I may have to take my life day by day, but even with my extra challenges, I’ve accomplished amazing things. I graduated cum laude from college with multiple awards and two minors. I’ve been in a few gallery shows with recent work, and have a great community of artist friends to keep me creating something every week. My tentative beginnings at an Etsy business have been more successful than I thought they’d be. I have a great office job at an IP firm that truly values its workers, something that has proved invaluable to me as I’ve navigated the minefield of new diagnoses. I have a happy little family in my girlfriend and our odd-ball cat (who, funny enough, is also disabled – he has FIV, asthma, really bad near vision, and some anxiety and battle scars from living on the streets before we got him). I have three siblings who are the world to me, and a mom who will call any time I need a shoulder to cry on.
You know, after all this, maybe today isn’t so bad after all.