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How To Live With Chronic Illness

It is possible to live your best life.

Photo by Aziz Acharki on Unsplash

According to the CDC, 400 million people are diagnosed with Fibromyalgia. A further 6 in 10 Americans have some kind of chronic illness. Fibromyalgia, as well as other chronic pain causing illnesses, are not counted in that number. With all of these people suffering from chronic pain, you’d think we’d get more than a Cymbalta commercial. There are no walks to combat chronic pain instead we get documentaries on the opioid crisis. We get doctors and the friends who tell us it’s all in our minds and we need to get over it. Until it hits them and then finally, we achieve some understanding.

But while I’m waiting for the world to catch up and realize that there are people who are suffering every day who need help, understanding, and compassion, I want to live my life. It wasn’t easy, but eventually, I figured out how to forgive my failing body and live my best life.

Be Honest About Your Condition

People with chronic illness hide out in the shadows, and I’m no exception. Most of the symptoms I suffer from when I have a flare are embarrassing. I drop things. I can’t remember what I’m doing or where I need to do it. I get lost easily. If I spend too long in conversation, my speech starts to slur. I have zero coordination and fall all the time. All of that is on top of the pain which wears on my body. I put on a fake smile and try to walk in a way that doesn’t make me look like I’m eighty years old.

But hiding in the shadows when I’m sick doesn’t do me any good, and it won’t do you any good either.

How are people supposed to learn about our illnesses if they never see it? If they never have to confront what it does to people, how will they learn?

I feel like I have to hide away when I flare up because people won’t understand or maybe they’ll think I’m faking. But after dealing with my symptoms for five years, I’m tired of feeling ostracized for something I can’t control.

Chronic illness is isolating enough.

It took me a while to be able to tell people outside of my inner circle that I was sick. I had to accept it for myself (we’ll talk about that later). You can’t admit to having something you don’t want to face yourself. But once I broke down and started telling people, “I want to hang out with you today, BUT my stupid Fibromyalgia is flaring up, and I’m not having a good day.” People understood and surprisingly sometimes I would get the reply of me too.

The Power of No

I am a Yes person. By that I mean if someone asks me to do something or volunteer, nine times out of ten, I will say yes. When I first got sick, I said no because I couldn’t physically or emotionally do anything besides lie in bed and feel sorry for myself. I felt guilty every single time I was forced to say no. The guilt damaged my mental health, and I fell into a depression that lasted for years. I felt like I would never be able to do anything ever again.

I was wrong.

There are lots of things that I can do, but I can’t be everything to everyone all the time. People won’t like it when you tell them no, especially when they’ve become accustomed to you always saying yes. But if you’re honest about your condition and tell them that it’s not personal, it’s because you’re ill, they should understand. If they don’t then you need to release that toxicity from your life.

Stop Hating Your Body

I detested what Fibromyalgia has done to my body and my life. It zaps my energy. It takes away my ability to think and communicate. I’m constantly trying to keep the scales balanced between the things my body will allow me to do and the things I want to do. Sixty percent of the time I am successful in that endeavor, but most times, I fail. When I fail, it means flare-ups that can last for days, to months. It’s those periods of “failure” that I am the hardest on myself.

I told myself on continuous loop how much I loathed my body and as a consequence, it didn’t love me back. I’m a firm believer that our bodies respond to our thoughts, good or bad.

Control Your Mind

Brain plasticity or neuroplasticity is the theory that you can rewire a “faulty” brain. I didn’t give much credence to the idea at first. How could my thoughts make me sick? I tried a little experiment, and for six months I flooded my brain with positive talk with the help of an affirmation app on my phone.

The result — not only do I have a more positive outlook during my flares, but I feel better than I did during them as well. It’s not a cure by any means but how you speak to yourself on a regular basis does impact how you feel. My self-talk before beginning the affirmations app was horrible. It was a constant stream of how unworthy I was. I wasn’t good enough, and I would never be. I was worthless because I wasn’t contributing financially to my family. I had nothing good to say about myself so is it any wonder that my body followed suit and gave up.

Set Reasonable Goals

When I finally accepted that Fibromyalgia was always going to be a part of my life and I was going to have to figure out how to live with it. I started setting reasonable goals for myself. Gone were the days of running all of my errands in one day. I would need to learn to ask for help and find shortcuts wherever I can.

This weekend my goal is cleaning the house. I will do all of the tasks that irk me when someone else does it (not like me) and the rest I’ll subcontract out to the kids and my husband. That way I don’t feel guilty about my husband cleaning the entire house himself.

I stopped doing the grocery shopping, and have it delivered via the supermarket.

I set goals every week that I know I can accomplish based on how I feel. And when I’m feeling a little extra energetic, I up my game and add a bit more. The key is to not set myself up for failure.

Exercise, Especially When It Hurts

I hate exercising. I hated it before I got sick and I hate it even more now that I HAVE to do it. Staying active keeps the flare ups away but only if I adhere to my limits. I can push myself a bit but not too much. Knowing when to walk away and not beat myself up about it is the goal here.

Some days the most I can accomplish is a long walk with the dog. Other days, I can play basketball with the kids. As long as I’m moving for at least thirty minutes a day, it’s exercise, and it’s an accomplishment I can be proud of.

Learn What Your Triggers Are

I have a very short list of triggers that I discovered through lots of trial and error. There are a lot of things on the list I can’t control like the weather and sometimes stress. But I can control what I eat by eliminating the gluten, which didn’t end my symptoms but gave me my energy back.

I take small victories where I can find them.

Eliminating excess sweets, all soda, and caffeine eliminated my stomach issues.

The best way to determine if something is your trigger is to keep a diary. After a few months, patterns will emerge, and you can start eliminating where you can.

Unfortunately, I can’t keep the world at a balmy 75 degrees with no rain, ever. But a girl can dream…

Change Your Diet, Change Your Life

A good portion of my extra symptoms, the ones that fell outside of the burning pain I feel from the Fibromyalgia were addressed by changing my diet. The old saying is true.

Garbage in, garbage out.

Whenever I eat processed crap, I feel lousy. It doesn’t happen thirty minutes after the meal but the next day. And it happens every single time.

When I eat a diet full of veggies, fruits, and unprocessed foods, I have more energy. My Fibromyalgia pain lessens in severity. No matter what your illness is, if you eat as well as you can afford and stay away from anything that comes out of a box, your body will pay you back with wellness.

Lying In Bed Is Never An Option

Five years ago whenever I felt bad, I stayed in bed or on the couch. The next thing I knew I had been on my sofa for six months. That’s not a life. What’s worse, you begin to accept that as your fate. Your brain tells your body that you’re useless and that you don’t deserve to get well. I felt like a lazy bum, and my body responded with you are a lazy bum, here’s more pain to keep you right where you are.

Resist the urge to lie on the couch whenever possible. Push yourself to go outside and take a walk when you feel like crap. Even if it’s only to your mailbox. Most days that was the best I could do.

Whatever you do, don’t settle for a life lived in bed or on the couch, you deserve so much more than that.

Make No Apologies

During my flareups, I used to beat myself up and make myself feel as bad psychologically as I did physically. I didn’t feel empowered to say I need more time or I need help. I always apologized for my condition. Then one day it dawned on me, why am I apologizing for something I have no control over? Cancer patients don’t apologize for having cancer.

Why should I apologize for being ill?

That was the day I started making my self-care a priority. I started getting massages once a month. I take time away from the stressful situations when I need to, and I don’t apologize for it. If I need to stop school, I stop. If I can’t volunteer in my child’s classroom this month, then I just can’t.

One should only offer an apology in a situation where they are at fault. I am not automatically at fault because I am sick. And no, it’s not an excuse to get out of things I don’t feel like doing.

I guard my wellness like those in recovery guard their sobriety. I make sure that nothing jeopardizes my wellness because my health and well being are too important. My quality of life is too important to myself and my loved ones.

And once you realize that you are in control of your life and your illness no longer controls you, you will live your best life.