If I were to describe my physical and mental health over the last few years, I would describe it as a game of Whack-A-Mole. In case you don’t know what game I’m referring to, it’s a game where stuffed moles pop out of a hole, you whack the hole with a mallet, and then another mole pops up. The goal is to hit as many as possible, but a new one always pops up. That is 100% my health.
Having multiple chronic illnesses and mental health struggles, it seems like a different one pops up the moment I whack one back into the hole. Unlike the game at the carnival, I don’t win a stuffed animal for whacking the moles. While the carnival game may be rigged, I’ve learned a few tips to manage my own personal whack-a-mole of mental health and chronic illness. Maybe some of the tips can inspire you on your journey.
Allow Yourself to Grieve
I recently passed my fourth anniversary of my diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome). It is one of two types of dysautonomia that I have. While it has specific diagnostic criteria, it can impact every body part because it is part of the autonomic nervous system not regulating itself. In other words, the part of the brain that does the automatic stuff like breathing, digestion, pulse, blood pressure, etc., has gone to the lake to do its own thing.
That said, when I was first diagnosed, I worked this fantastic marketing job. I absolutely loved it, and I was really good at it. Yet POTS took away my ability to do my job. I could not recall words, so I literally sounded under the influence; I couldn’t walk, I could barely sit up, and I took two naps a day because I was so fatigued and felt like I was constantly running a marathon. My diagnosis completely changed my life.
I did NOT plan on moving across the state and then becoming so ill I could barely cook dinner for my family. I did not plan on not being able to work an average job at the age of 30. At the beginning of my diagnosis, I lost a lot. I wasn’t happy about it either. Sure, I finally had an answer to what was wrong, which wasn’t all in my head. But I was not happy about all that it took away from me. My life and the idea of what my life should look like completely changed. I had to grieve that loss.
See, grief isn’t something that happens just because someone dies. Grief can occur due to any type of loss; the loss of a job, the loss of a friend, the loss of your health, or the idea of what healthy appears to be. Grief is about accepting that loss, feeling the feelings, and finding a “new normal.” It’s ok to be sad about not being able to do all the usual things you used to do. It’s also ok to find new things to do.
Celebrate the Wins
As you go through your grief journey and find your new normal, it’s easy to talk down on yourself for not being able to do all the things you used to do. It’s important to celebrate what you can do. I used to be able to do all the Spin and Pound classes at the Y. Now, I am the youngest person at the water aerobics classes. At first, that was really hard. But those older ladies are hilarious and cheer each other on. That’s a win. Today I celebrate what I can do even if it looks different than what it used to.
The thing is: chronic illness changes how the body works. So, it’s going to change one’s ability levels. For example, I prefer to stand at my kitchen table and fold when I fold laundry. Then I can make piles at the kid’s spots for them to put away when they get home from school, and I can stay focused more easily on the laundry. But some days, I can’t stand that long, and I end up folding laundry sitting down. Is it what I prefer? Nope. Is it getting done? Yup. Do I celebrate that and feel good about getting it done? Heck yes, I do. So even if your activities are modified to your new level, celebrate completing them. You got it done and did your best. That is what matters.
Go With the Flow
My chronic illnesses are highly unpredictable. Some days I’m on top of the world, and others, I need a rest after taking a shower. I have learned to go with the flow. I don’t make many plans anymore, and I schedule one big thing a day. When I first got sick, I did not make any plans. It was a very lonely time. As I have adapted, I have learned that I can make a few plans, but I always tell people, “it may change.” So, I make many tentative plans and then a few backup plans.
Life, especially with chronic illness, can be unpredictable. There’s a saying about how an expectation is a premeditated resentment. To make your journey a bit easier, let go of plans and go with the flow. It is a difficult skill to learn but one that is totally worth it in the long run.
Schedule Fun Time
This one is huge for me. It seems like a full-time job to just navigate my illnesses, especially during a flare-up. Flare-ups are hard and unpredictable. They derail my entire life for a bit. It gets depressing. So, one thing my husband (who also has POTS) and I do is our scheduled date night. By the end of the week, we are too fatigued to go out on a “normal” date. As a result, every Saturday has turned into a date night at home. We put our phones away, watch whatever show we are currently working on (right now, it is Sandman), and simply enjoy each other’s company. The exception is if the Huskers are playing a night game. Then my husband is stuck watching me scream at the TV as if the players can hear me.
It’s essential to schedule a fun time into your routine. Does this look like a friend bringing over your favorite ice cream and watching a movie together? Could it be that you play a board game or card game together? Whatever healthy activity you can do to bring some light into the struggle of chronic illness is good.
Living with chronic illness is hard. Living with mental illness is hard. Living with both is extremely difficult some days. However, it is doable. It is possible to live with both and find a way to manage them instead of them constantly managing you. Every day is different. Every day is an adventure. After you have allowed yourself to grieve, make sure to celebrate the wins, go with the flow, and schedule some fun time. You’ve earned it! Be proud of yourself because I am proud of you!