Trail Marker #11 Living with a Chronic Illness

As we stop at this trial marker today, let's talk about how those of us who have been diagnosed with chronic illnesses can live with a quality of life.. Having a health challenge is difficult especially when we have expectations to met as a mom, a wife, an employee. For me, I have been living with a chronic illness since birth. I have a very rare genetic condition that affects the mitochondrial system. It is a very rare condition and I've been told that it is progressive and has no cure or treatment. When I found out what was going to happen with this disease I went through all five stages of grief (denial, anger, blame, depression, and acceptance.) I'm wondering if you went through the same stages when you found out that you were going to live with a health challenge for the rest of your life.

I struggle with my sense of identity. Over the years I put a great deal of energy into becoming a teacher. This included years of education. When I found out I was no longer going to be able to work, I wondered what my purpose actually was going to be. As my disease progressed, I ended up not being the mom I needed to be. I'm sure that you struggle with your identity as well. Every day I never know how my symptoms are going to affect me. There may be days that my symptoms are okay and I am able to be the mom, the employee, the ministry leader that I need to be and then there are other days like I said that I'm not able to perform.

There is a lady in the chronic illness community that came up with an analogy that each one of us is given a certain amount of spoons each day. One day we may only have one spoon. When we get up, we only have one spoon with enough energy then to do one thing. Maybe we use that spoon to take a shower. On a day that you have three spoons you have enough energy to take a shower, you're able to clean a little bit around your house, and then maybe make dinner. There are days that you have no spoons which means you are bed ridden. There have days that I have been in that situation. On the days that I have 10 or 12 spoons I'm able to do a lot more on that particular day.

With a chronic illness, there are many days I want to control the situation. I want to figure out how to fix my symptoms. I want to hike up and down the lakes here in Michigan. I want to see every single lighthouse and yet I don't have enough spoons to do that. There may be some days that I have enough spoons where I can walk around the neighborhood either one block or two. Over the years, I have had medical doctors that have been very negative, egocentric. At the same time I have come across medical doctors and nurses that actually were helpful. The majority of the time though was communicating with a medical team that was not helpful leading to being stressed, having anxiety and bitterness. There is neglect, and possibly blame.

Dealing with that on top of your chronic illness is something that I want you to know is normal. What I love about those of us who have a chronic illness is the community that we have where we can help each other. Reach out to me on Instagram @joy.embracejoycoaching for encouragement, tips and training. There may be testing that they have not done and may need to be doing. We can support each other by listening when we have had a hard day calling the insurance companies to get pre-authorizations for medicine, for procedures, being on the phone forever to resolve claims that were not paid correctly, making appointments with multiple doctors. Believe me I know how much that takes out of our life. There are things that can improve your quality of life.

1. When you do have extra spoons, take the time to make up meals to have when you have days without spoons. I use an Instant Pot where I can take frozen meat out and a meal is done in 20 minutes. I portion up the meals to freeze. I also have my groceries delivered as it is difficult for me to walk up and down the aisles. So grateful to those in my life who also help with laundry and cleaning.

2. Speak up. This is important especially with medical doctors. If they are not doing the tests that they need to be doing or they are not explaining the test results where I can understand them, I speak up. We need to be our own patient advocate so don't be afraid to speak up. This is also important when you talk with your caregivers.

3. Ask for help. This is something I have to tell myself every day. It's okay to ask for help. For many years I have difficulty even picking up a gallon of milk to pour a drink. I now purchase smaller bottles of milk. What other changes can you make?

4. Take time for yourself. If you have no spoons on a particular day, rather than putting yourself down, being depressed - it's okay to have a Netflix marathon. It's okay to listen to an audiobook.

5. Take time for yourself. Snuggle into that warm blanket and watch a movie. Love yourself even on the hard days.

6. Cry out to the Lord. He understands the groanings of your heart. He loves you and wants to comfort you. He did not design your life to be in pain. He will restore your health and heal your wounds (Jeremiah 30:17).

Don't do life alone. Reach out to the chronic illness community. There are ways we have been able to manage our symptoms which may work for you. Let's walk this Road to Restoration experiencing the joy of the Lord in the midst of our pain.