Adapting Your Homespace For Living With Chronic Illness

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.

Mountains and sulfur spring Wyoming

Photo credit: Sammi Blake

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

Hot sulfur spring Yellowstone

Photo credit: Sammi Blake

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.

Enjoy life…

12 thoughts on “Adapting Your Homespace For Living With Chronic Illness

  1. Sammi. Thank you for your article. I am passing it along to others who I know live with chronic illness with hopes that they too will find the acceptance you have found. I especially liked your “Tin Man” analogy. I have found this to be a number one need for my body. I will try and do a better job of making it a priority.
    I love your photos.

    • Lori: Thank you for your comments. I have worked very hard on my acceptance with Fibromyalgia and continue every day to make it a point to stay positive. I have to admit, I have not always been so positive. There have been many days where I was much more negative than positive. It wasn’t until recently that I discovered the negative energy I was using was actually making my condition worse. As for the Tin Man analogy, The Wizard of Oz was my absolute favorite movie growing up. Now as an adult I find myself relating to it all the time. But yes, it is so true that our bodies need to be “oiled” on a regular basis with exercise and stretching being the lubricant.

  2. Sammi: What wonderful photos, they should be identified.
    It is hard for people to identify with someone with chronic pain if they don’t experience it themselves. I have a couple friends that know. Others do feel awkward as they can’t fix it for you. Taking the best care of your precious SELF is the best advise, exercise, wholesome foods and
    Meds. if needed. The best is Friends who love you and share your life who accept and support you frailties and all. Each of us has something we compensate for.
    Joy Stark

  3. Joy,

    All the pictures were taken in the Yellowstone National Forest. I am so glad you enjoyed them. You are so right about taking care of yourself as we are the best advocates for ourselves, but it always helps to have loving family and friends to support you. Enjoy your day!

  4. Well done Sammi, I have seen you in pain and you have done really well trying to maintain a certain kind of normal daily life. I hope this will help others.

    • Thank you so much! My goal is to help others with chronic illnesses realize they can overcome challenges and can have a wonderfully fulfilled life. I have learned that how I live in my home makes all the difference in making my life more comfortable.

  5. What a wonderful post Sammi. You are an awesome writer! Im so happy you have found some tools to manage your flare-ups and that you are taking more time for yourself. I wish you all the health and happiness in the world. Glad you are my friend!

  6. Jessica,

    It means so much to me that you took the time to write this comment. I am also so glad we are friends. It’s funny you mention my flare-ups. I can remember being with you one time and having a flare-up, but not wanting you to know about it. I have come to realize that it hurts not only myself, but also others when I do not voice what is going on. I hope that others with chronic illnesses can learn from me that life is all about how you choose to live it.

  7. Great post, Sammi! I remember back in our teenage years, all of us cousins used to marvel at your ability to let go of all cares about fashion and “looks” in order to be comfortable. We thought you were crazy, but you know we were really just jealous that we couldn’t let go quite as well. You have always been a master of comfort, and as I read your article I actually chuckled to myself as it dawned on me that God gave you this ability all along knowing that you would need it so badly one day! Thanks for sharing your story!

    • Lindsay,

      I have never looked at my ability to be comfortable as a “God given” gift, but it sure is isn’t it? I think back to those days that you are talking about and remember how all of you cousins used to comment about how I always took being “comfortable” very seriously. I never realized you all admired me for being able to be like this. To this day (as you probably already know) I still LOVE to be comfortable. I would love to be able to wear sweats and comfy clothes every day. Thank you for making me realize just another one of the many gifts God has given me!

  8. Sammi-Thanks for sharing your story and honestly, for being so brave to do so. Living with a chronic illness such as yours may seem “made up” to others because to others it is invisible. We can not see the pain or discomfort you are in so therefore it must not be real, as you know this is not true.

    I think it is great that you have not let this illness take over you but you have taken control over it and have adapted your life to living with it. Many people have a lot to learn from you!

    • Yes, the type of condition I have is not easily recognizable to the naked eye. This as I mentioned has been very difficult for me. I have struggled with the fact that people very close to me do not really get anything about my condition. Anyone else with a chronic illness would certainly say it is not made up. I believe the lesson in this is that we don’t always know what is going on in someone’s life, and therefore we should always show kindness and compassion to others regardless of what our perception is.

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