Trying to Stay on Top of Everything When You Live With Chronic Illness

I have Hashimoto’s, fibromyalgia, spondylosis and endometriosis. I also volunteer with my church and Team RWB, a veteran’s service organization. I’m married and I have a full-time job, and I’m a Reservist in the Army for at least three more years.

I do my best to handle all my commitments and to be where I’m supposed to be and to stay organized, but it’s hard. I think staying busy is hard for anyone, but when you throw in chronic pain and fatigue, it’s overwhelming. I simply can’t do everything.

Even when I write things in my calendar, sometimes I forget to look at my calendar. Just this last weekend, I had a commitment at church, and the weather was bad, so in my head, I didn’t have to be anywhere. So when they texted me at 11:14 (service starts at 11:15) as a reminder, I just froze in embarrassment. I told the coordinator that I was so very sorry, I completely forgot, but that I was wrapped up in heating pads and cats. She assured me it was not a big deal and she had it covered. In the grand scheme of things, it’s very minor thing, but I felt, and still feel, terrible about it.

These situations are particularly hard for me because I’m doing so much to take care of myself. I get plenty of sleep every night, I drink nearly a gallon of water daily, I take my medications and supplements, I do yoga daily, I go to physical therapy, I have coping mechanisms for anxiety, I follow a pretty stringent diet, I go to so many doctor appointments, the list goes on. Being chronically ill requires a change in lifestyle and fairly constant planning (food, medications, heating pads, etc). All of these things help immensely, but I still have bad days, which trigger a depressive response. Despite everything I do, I’m going to have these illnesses for the rest of my life. So I get sad and frustrated. I try to take it a day at a time; it’s hard to make plans because I don’t know how I’m going to feel. And that makes me sad and frustrated to the point that it affects my self-esteem.

I’m doing everything I can. But the bottom line is I’ll never be the same. No matter what I do, there’s no cure. So on good days, I’m thankful. On sluggish days, I just push through. On bad days, I shut down. I communicate to my circle that I’m down for a day or two and hope they’re understanding. They usually are, but I want to be reliable. I want to be on top of everything. This fatigued, depressed, frustrated, unreliable person isn’t who I want to be, but it’s who chronic illness has made me.

I use the old school paper calendar in my purse, where I not only record my daily symptoms but also any plans that I make, I put reminders in my phone, I ask friends to remind me about plans. I texted a friend the other day, “My favorite necklace is in my console.” She thought I texted the wrong person, but really I just needed someone else to know where it was in case I forgot. I sign up for reminders from every doctor’s office and the pharmacy. I only schedule one social thing a weekend because I don’t want to overcommit and run out of energy. I have medication and disposable heating pads stashed everywhere. I volunteer because it gets me out with people, even though I sometimes have to cancel commitments. I still occasionally feel like I’m never going to get on top of all this, and it’s really hard to accept that this is my life now.

But then on good days, I feel like myself and I’m thankful and happy. I have learned not to overdo it on good days, because then the next day will not be a good day.

Before I developed these illnesses, I was a dedicated distance runner and routinely ran 20-25 miles a week. I was a gym rat and a social butterfly. I am resentful of these illnesses taking that from me. I want to go get lost in my own thoughts during a 10-mile run. I want to spend an entire day at an outdoor music festival, not caring that I’m getting dehydrated and eating a ton of fried food.

I wouldn’t say I’m new to chronic illness, as I was diagnosed two years ago. But obviously I’m still getting accustomed to my limitations. Some days are just harder than others, and today is hard.