The only way to deal with a chronic illness is to find that new normal.
I will never be healthy again. I will never be “normal.” I have to create a new definition of what it means to be healthy, and a baseline for this new normal or I won’t have a life. Health always seemed like something you have until you get sick. Or perhaps you live a lifestyle that isn’t conducive to being in good health.
But I’m not a drinker. I don’t smoke. I eat pretty well. I get my seven to eight hours of sleep a night when I don’t have insomnia. How is it possible for me to be unhealthy?
The Picture Of Health
To look at me is to wonder how I could ever label myself as being unhealthy, but I am. I’m not overweight. My diet is low in protein, high in vegetables. I don’t eat processed foods or anything with additives. Somehow around the age of thirty-five, my body decided to start a war against itself.
It began with pain in my legs. Not necessarily a muscular pain but deeper and it burned. Sometimes the pain got so bad I couldn’t keep still. Insomnia set it in. For weeks and sometimes months I couldn’t sleep. The best I could get was three hours a night, and I learned to function on that. The tingling moved to my arms to the point where doing my hair and getting dressed became a herculean task.
It wasn’t until I was driving my children to school with a headache I thought was just allergies, that I knew I had to see a doctor. I got lost. On the road I took every day to drop them off, I became disoriented. My daughter had to help me get her to school, and by the time I got there, I was fine again. I saw doctors and specialists, and no one gave me an answer. In the end, they labeled me with Fibromyalgia because the answer, the real one, eluded them.
The World Health Organization defines health as a state of complete physical, mental, and social well being, and not just the absence of disease or infirmity.
By year four, I was in a complete state of unhealth. I stopped going out and doing anything with my family because of fatigue. I no longer talked on the phone because sometimes my thoughts got jumbled or I slurred my speech. I didn’t want anyone to know how bad it was because not only were the symptoms embarrassing but not having a name to call it was even worse.
Not having a diagnosis makes you feel like everyone is looking at you and calling you a crazy hypochondriac behind your back. You know your symptoms are real. The people in your life who have seen your symptoms know they are real. The only person who doesn’t believe you is the person you’ve paid to help make you well.
That’s when the depression set in and stayed. I was no longer living, I was existing, and I did that for another year before turning forty forced me to reevaluate my state of health.
I didn’t want to live like that, a prisoner inside my own body. I decided that if my body wanted to fight against me, then I would fight back, mentally with everything I had.
Reevaluating What It Means To Be Healthy
The idea of calling myself healthy now might seem comical to some since I am not cured. But I’ve found that how I view my lack of health and treatment influences how I feel mentally. I can no longer look at my lack of physical well being as being sick. I will always be sick, and that state of being will most likely never change.
What I can do cure is my depression, which comes from always checking out on life. Instead of giving up on life, I embrace what I can do. I let people know when I’m tired. I rest when I need to, and I take total responsibility for my mental wellbeing.
I still have pain.
I’m always fatigued.
But I’m not lonely anymore. I do the things that I want to do despite how my body feels because I’ve learned that being healthy means more than just the lack of illness. It means taking ownership of my life.
I don’t lie to people anymore about my health status. I don’t have a diagnosis, and if you can’t wrap your mind around that, then it’s no longer my problem. I have to live with it every day, you don’t. I may never get an answer. I doubt I’ll get a cure and I have to live with that.
It’s not in my head.
It’s in my body.
And no matter what I do or don’t do, it has decided to take up residence. I have learned to live with it because I don’t have a choice.
But I don’t have to give it control of my life or my mind. It may control my energy level. It might hold sway over the amount of sleep I get. It also might keep me in constant pain. But that’s all it gets, and that’s all it will ever get as long I can keep my mind strong.
The Battle Plan
My level of healthiness relies more on how I’m feeling mentally and emotionally than it does on the numbers on a page. I’m more than low CBC readings and test results that don’t make sense. I fight my symptoms one day at a time, knowing that I can’t make the pain go away, but I can make life tolerable.
I can’t control when insomnia sets in, but I do now how to keep it at bay. I exercise. But I can’t do cardio or pilates, or even yoga because it flares up my other symptoms. I walk. When the weather in Colorado sucks as it does from September to May, I ride a stationary bike. I clean my house in small bursts because too much activity will tire me out fast. It’s all about finding that balance. I had to learn that I can’t do it all and I don’t have to.
I refuse to take opiates because I think that should be reserved for when I can no longer deal with the pain. When it gets so bad that the choice is between death and a pain killer, that’s when I’ll start down the opiate trail. Until that day comes, I use CBD oil. There are many to choose from, and it took a lot of trial and error until I found a combination that works for me. It takes the pain down to a dull roar and on my best days, it’s not there at all.
This is the hardest thing to work around, and to be honest, I haven’t found one yet. I deal with each day as it comes. Some days are good. My speech is normal, and I can remember words and how to use them. On my worst days, I can barely speak. My words are slurred, or I can’t remember what I’m doing or how to do it.
I stopped beating myself up for the bad days. I stopped being embarrassed. I started telling people when I’m having a bad day as if it wasn’t obvious. Working around the bad days can sometimes prove harder than it seems. Especially when I have a deadline, that’s fast approaching, and it feels like my brain will never reset itself.
It always does, and I have to trust in that. I have to do all the things that will ensure that reset will happen. I eat well, exercise even when it hurts, and stay focused on self-care. If I’m lucky, I’ll only be out of commission a few days before I reset.
Living With Chronic Illness
I will never have the body I had before 2013 again, and that’s fine. But I also can’t continue to lament the fact that it’s gone. Being constantly fixated on what I lost keeps me frozen in a past that will never be again. The only way to live and have a life is to move forward with the body and its limitations as they are now.
Living with a chronic illness means being able to come to terms with and relinquish the old you for the person you are now. In the same way that I grew into myself from my teenage years to early adulthood, I must now grow into this new body. I have to get to know this new me and learn to love her. My life depends on it.