This is the first post of a new blog series. The posts in this series will include my thoughts on a variety of subjects, all beginning with "The Art of."
Today I want to talk about the Art of Living Well with a Chronic Condition.
To begin, a little disclaimer. I was diagnosed with Ankylosing Spondylitis 3 years ago this month, but have been living with chronic pain since 2005, when I lost a baby and went through a chain of operations. I also spent about half of high school in chronic pain. So while I am a bit of an AS "newbie", I am not new to chronic pain, and have the scars to prove it.
I was very fortunate in that I discovered two bloggers in the years leading up to my AS diagnosis. Two female bloggers living with chronic pain. One was Sara Frankl, who lived an incredibly inspiring life and taught countless people (including me) to Choose Joy. Sara died in 2011 of complications to AS.
The other was NieNie. Stephanie Nielson was severely burned in a private plane crash. She nearly died. She has endured countless operations, skin grafts and more in the years since.
Both showed me that it was possible to Choose Joy no matter your circumstances, and that you could inspire people while doing it.
I determined in the summer of 2010, during a journaling session in a coffee shop, that if Sara and Stephanie could do it, so could I. Regardless of what came my way, I decided I would make as many commitments and recommitments as needed to adopt and maintain an attitude of joy and gratitude.
I encourage you to visit the above mentioned blogs and read some of their stories.
Here are some of my personal tips on living well with a chronic condition:
1.) Decide that no matter what your condition takes from you, you will fight to retain your identity. Do everything you can to ensure that your physical health does not rob you of what makes you unique. Adapt, modify, replace a hobby with a new hobby, but do not let go of your essential self.
2.) Do not give in to bitterness. Yes, you have a chronic condition, and no, it's not fun. Many others do too. Some conditions are more difficult than yours, others less difficult. This is yours. Grieve it, accept it, and then get on with the business of living your best life despite it.
3.) Differentiate your physical self from your mental/emotional self. I think of my body as a house. I live inside that house. AS likes to wreak havoc on my house. Inside the house though, I am unshakeable. I am stable. I am joyful. I am just fine. As Sara Frankl said, "My body is brutal, but I am good."
4.) There will be times when you simply can't be happy. Get angry, but deal with your anger in a healthy way. Don't take it out on those around you. Cry it out, then start again. You will have moments, hours, days and weeks when this 'chronic' reality is not ok. It's okay to acknowledge that.
5.) In order to live with a chronic condition, you will do well to simplify your life. This is a great opportunity to use your boundaries, know your limits, and say "no." Your pain and illness will take time. Scale back in other areas and you will find that you are less stressed. Stress can lead to pain, so don't underestimate the value of limiting the things which will cause you stress.
6.) Make time for the things that feed you. Just as stress will negatively impact you, nurturing yourself will benefit your health. So take a walk, paint, sit at the beach, journal, play music, watch a funny TV show, have dinner with friends. Do what feeds you. If you don't know what those things are, try making a list of your activities and then make a note of how you feel during and after those activities. Writing energizes me. Painting soothes me. The ocean inspires me. Being around people too often or for too long drains me. When you have a better idea of what drains and energizes you, take care with your calendar and schedule things appropriately.
7.) To the best of your ability, take good care of yourself. Stay hydrated, get as much quality sleep as you can, rest when you need to, eat nutritiously, and keep your body moving as you are able. Don't assume that your condition is responsible for every symptom you have. Your choices and lifestyle may be playing a part as well. Do not ignore new or worsening symptoms.
8.) Your abilities may ebb and flow. Learn to go with the flow. When I can walk without aggravating my joints, I gratefully do so. When I can't, I don't. It will be worth your while to see the professionals best suited for your condition and work with them to gain the best understanding you can of both how your disease or illness typically present themselves, and what's currently happening with your particular case. My months in physical therapy were very helpful in learning about my particular mobility, what parts of my body were referring pain where, and what would be helpful and harmful for me, in dealing with mobility and AS. Working with a good rheumatologist, and having appropriate tests done has been incredibly helpful too. I find it's far less stressful and fearful to know what's going on with my body than to worry about it and not know.
9.) Create or maintain a support system. When you are able, be there for others. When you need help, learn to ask for it, and accept it. Severe levels of chronic pain quickly cause a sense of isolation. That sense of being alone can be detrimental to your well-being. Reach out!
10.) Cultivate an attitude of gratitude. No matter how bad things are, there is always good if you look hard enough. Keep a little notebook and try to jot down a few things every day that you are thankful for. Jot down beauty around you, compliments you receive, and inspiring quotes. List things that you have -- shelter, food, clothes. Start broad and basic and you may find your attitude changes quickly. In my experience, gratitude, especially when I name it out loud or write it down, creates joy.
I hope something here helps you when you are struggling with your reality. Life still has a great deal to offer, and you are not alone!
