When you’re chronically ill, it can be very easy to lose yourself in feelings of low self-worth and self-pity, and to generally feel depression and despair. Often we lose the ability to do what we once could and just getting through each day can be a challenge. You tend to focus on what you are no longer able to do or what other people who are healthy can do. Even though you are sick, you can still try to focus on the positives or things you can do in order to live your personal best life. In our community, these small celebrations are called, “Chargie Wins”.
The Power of Positivity
I tend to be a very positive person by nature, so I subconsciously tend to find these “Chargie Wins”, even when I’m having a really bad day. Like I said, it can really be anything meaningful to you that you’ve been able to accomplish during a given day. For example, I have not been feeling well for the past few days. I canceled all of my plans and got no work done. Yesterday, I was finally able to take a shower and wash my hair and today I straightened my hair and did my makeup to record a video. To someone without chronic illnesses, these are things they take for granted that they are able to do everyday, but for me, these are Chargie Wins.
Do Unto Others
As I said, I have not been feeling well and have been in bed for three days. It’s very easy for someone to feel down under those circumstances. When people don’t feel well physically, it can also effect how they feel mentally or emotionally. When this happens to me, I find it helpful to focus on the positive. Something that always makes me feel better is helping other people. I’ll go to the Unchargeables Instagram account or Facebook page and read through the posts and try to give other people advice or encouragement. It can also be a good distraction from whatever I may have going on. I’ve found that when I support others, they return the support when I need it as well. It can even help to know that someone else relates to what you are going through. This also helps me to feel productive and like I’m doing something good in the world.
I also enjoy looking at the Facebook and Instagram accounts for another reason: other people will share their Chargie Wins. This can be a good reminder to celebrate the little things when it doesn’t seem like there’s anything worth celebrating. It’s also a reminder that everyone has their own challenges and good and bad days. Sometimes it just gives me a gentle reminder to stay positive and tomorrow can be a better day.
The Path to Acceptance
At times, my health will not allow me to be on the computer or use screens. Since so much of my work for the Unchargeables requires being at the computer, these days can be difficult for me. I have learned that I just need to accept this and hope that things get better, but for now I have to just do whatever I can do. On days like this, I will practice self-care and do things like listen to podcasts, cuddle with my animals, or spend quiet time with my daughter instead. Life with chronic illness is unpredictable. You never know how you will feel from one day to the next. That’s why it is important to set realistic goals for yourself and manage expectations. With this comes acceptance. For me, acceptance means that today was a bad day so I didn’t accomplish everything I wanted to and hopefully tomorrow will be better.
My capacity for acceptance was challenged during my recent move. I had planned out my entire week. I told myself I was going to do a certain amount of work and packing each day in order to meet my goal in time for my move. Well, that’s what my mind said, but my body had other plans. When the first day of packing came, I was physically unable to do it. I thought, well, it’s not a big deal. I’ll just do more tomorrow. Tomorrow came and I still was not feeling well enough to do anything. The same thing happened the next day. Part of me wanted to scream! My plan did not work and I was off of my schedule and still had so much to do. I calmed down and realized that there was really nothing I could do about it. That was something I had to accept. I would get everything done at my own slower pace as I was able. Sometimes you have to amend your expectations to fit circumstances you cannot change.
It’s Hard to be a Mom
Another area of my life where acceptance comes into play is when trying to raise my daughter. Being a chronically ill mother is the worst! I often feel guilty for not feeling well enough to play with her as much as she would like. I can’t always take her to the park or the movies or even just outside to play. My body will not allow it. I feel guilty for not being able to do some of the things parents who don’t have chronic illnesses can do with their children. It’s hard, but I’ve learned acceptance in this area of life too. On my bad days, I’ll try to do things like cuddle with her and watch a movie or even reading stories.
I’ve also accepted that I need help sometimes. I have told the other kids’ parents that I’m chronically ill. I will plan play dates for her with other kids so that she can still have fun even when I am not feeling well enough to play with her. I have told the other parents about my illness so that they can not only be there for my daughter, but myself as well. Everyone needs help sometimes, but when you’re chronically ill, having that support system becomes even more important.
There’s Always Tomorrow
I’ve learned that the biggest part of staying positive when living with a chronic illness is to manage expectations. For many of us, those expectations are drastically different from those which we had for ourselves prior to becoming chronically ill. Instead of focusing on what we used to do or can no longer do, it it important to shift attention towards the victories we can attain. These Chargie Wins, though they may seem minor to those who are not chronically ill, should be celebrated for the accomplishments they are. Furthermore, even if something did not work out quite as we would have liked, accept that it may not be able to be changed, but know that tomorrow is another day.