I was first diagnosed with a chronic illness at the ripe old age of twenty. In many ways, it came as a relief. I now had an explanation for all these problems and a course of action. But, at the same time it labeled me.
I have Fibromyalgia. Not only had I never heard of it, I could hardly even pronounce it. This came coupled with Chronic Fatigue Syndrome and a host of other issues later down the road.
Chronic illness impacts everything
Every aspect of my life was impacted. I had to quit my fulltime job because I could no longer do the things my job required of me such as standing on my feet for numerous hours a day.
I had to deal with friends and family members who did not understand at all. (Pain is relative and everyone has a different threshold for pain so it is difficult to understand just how much pain someone is or isn’t in. Besides, I had no outward physical manifestation of my illness for others to see.) When people began to understand that this was a condition I would live with for the rest of my life, it seemed to almost be something no one wanted to discuss or show concern over. Pain from a surgery or disability that is visible is easier to talk about. Who really wants to hear about constant pain that will be around forever?Because of this I often felt alienated from others as if they didn’t care when in actuality they probably just didn’t know what to say or do.
I had to spend a lot of my time resting and recovering when I did any activity such as exercise. I had to plan my life completely differently. Things such as traveling were difficult as I knew when I traveled somewhere riding in the car for a long period of time, it resulted in a subsequent “flare-up”. Another problem area was sleeping in different beds. That was really tough as well and often took days to recover from when I returned home.
Changes in my home
After attending an eight-week program in the hospital on managing and living with chronic pain, I made changes in my space that were suggested to me in the program. Though simple, they actually were big for me as I tend to be somewhat obsessive. For example, on days when I knew no one would be coming over, I would not make my bed. It was one less task I had to do. This may sound silly because making a bed only takes a few minutes, but when you live with a chronic illness you learn to pick and choose what to do each day.
Other changes I made included how I handled every day cleaning. I had always liked my home to be in perfect order all the time. I learned to not be so rigid on normal days and save the “perfectly clean” days for when I was having company over.
Huge changes were made in my eating habits as well. It was recommended to me through my Rheumatologist that I avoid caffeine and white sugar completely. He also suggested I use organic products and produce as much as possible. It was amazing the weight that dropped off and more importantly, how tied to food my pain levels were. In other words, if I “cheated” at times like Thanksgiving and had sweets or foods that contained preservatives, the next week my pain levels would be far more intense. I am a real example of what food can do to the body- so choose carefully what you put in your mouth!
Everything doesn’t have to be perfect ALL the time
This is a lesson I had to learn. It really could be a lesson for everyone: Let some things go!
Try it yourself. I can almost guarantee you will feel good letting one little thing go. Trade it for doing something that makes you feel comfy!
Almost a decade later
Life continues to change for me. Married with two wonderful stepchildren and now a beautiful daughter of my own, I have made even more changes in how I live in my home. The pantry and refrigerator aren’t as well organized. (OK, the labels no longer face forward equally spaced apart!) I have too much to do, too many bigger things to be involved in than something as silly as that. But, my health issues are still a daily challenge so with these added responsibilities I am ever more mindful of ways to counteract my issues. I have learned even more ways to adapt.
What has evolved with the changes in my life is I make sure I have comfortable relaxation areas in my home.
Here are some examples of how I relax:
- Soothing music
- Comfy pillows for sleeping and resting
- Special spaces designated for quiet
- A bubble bath while reading a good book
- My comfy, old PJ’s (some of my favorite T Shirts I have had since elementary school)
- A comfy bathrobe and slippers
Tips to live by
I have learned through trial and error what helps make me comfortable in my home. Here are some of the things I have learned to do:
- Eat organically or as locally grown as possible.
- Know the importance of sleep and relaxation.
- Use natural products for cleaning as often as possible to eliminate toxins in the environment.
- Understand the importance of exercise and stretching. (Remember The Tin Man in The Wizard of Oz needing to be oiled? So do we by moving and stretching!)
- Prioritize and choose what you do carefully.
- Let the small things go.
- Practice calmness.
Absolutely, one of the biggest changes I made in my life when I was first diagnosed with Fibromyalgia was to begin eating organically. It is certainly more expensive but, my body and I deserve the best I can give it. Now that I have a daughter of my own, I plan to instill in her all these same habits – particularly, eating healthy. I make all her baby food with organic products and will continue to feed her organically as much as possible. In future articles I plan to share with you some of my ventures into teaching healthy habits to my daughter. I hope you identify with my parenting style and enjoy my message!
If I could sum up what I have learned with my illness it would be this
Everyday that I live with this chronic illness, I become more and more aware of the need to be positive. I have found that it actually takes more energy to think and act negatively than it does to be positive. Although I still have tough days of wondering why I was given these challenges, I choose to try to overcome them and live in the moment I am given to enjoy. All of us have obstacles. All of us have “disabilities”. It is up to us to rise above them and exhilarate in life.