To feel life

By Charlotte Secher Jensen

You probably know it well. You're at a party or event where you get into a conversation with a stranger. Someone who doesn't know you at all, your situation, your medical history or what you do. What's the difference? Well, the difference is that if I tell the person that I work in accounting, they ask me where I work. If I say that I have a flex job and work in accounting, they usually ask me why I have a flex job, but not where.

The price for choosing to

It's actually a good picture of my life as a chronic pain patient. Because some days I feel pretty good and have energy. I want to take the conversation about having rheumatoid arthritis, which means I work fewer hours than before. I have the energy to answer the many questions and explain, if the person is otherwise interested in hearing about it.

Other days I'm stuck with the ends of my nails. The party I've chosen to attend sucks the last of my energy out of me, if there was any left after a shower, the drive, and other preparations. And I just know that this is going to cost me a few days in the end.

But it's a conscious choice I've made. I chose the party and I know in advance that it's going to cost me both before and after. The fact that I'm saying yes to something a month in the future means planning. I have to take extra care of myself in the days leading up to it, and then there are the days after when I have to recover.

The joy of life pains

I have no way of knowing in advance whether it is a good day when I am going to a party, or one of those days when the arthritis is raging through my body and making it difficult to seem energetic and happy. I am usually a pretty positive person and can see the positive in most things. That is why I often choose to go and not to go because I want to participate in different events. It makes me happy, and I create good memories and can look back on those experiences with joy. The days after, I take the joy of life pains with a straight face. Because they are mostly worth it.

Of course there are days when I have to choose things. Days when the solution is the couch, and when it's the body that decides. When I'm tired and in pain. When I have to recharge. There are days when it feels like I can do it all, and on other days I feel very limited. But it's a balance. Because no matter what I do, it costs me in some way. Physically and or mentally. So why not get the best out of what I do?

An overreaction

The first few years as a gout patient I had an incredibly hard time finding that balance. I was whizzing around at 120 km per hour during all waking hours and slept very little. Far too little. I was so afraid of not being able to experience enough in life and nervous that the gout would make me so physically limited one day that I couldn't do what I was used to doing in my busy everyday life.

To this day I can see that it was an overreaction that didn't become my reality at all, but at the time I was really worried. I didn't know the future and had no idea what it would look like. That was my way of reacting after I was diagnosed.

You can't keep up that pace for long. Neither when healthy nor sick. So I went down with stress. Both physically and mentally. But with help I got myself back together. I found out that it wasn't the solution when I had a chronic illness. That I had to listen to my body more. Notice. It took a long time to learn. I still fall into this after 18 years as a chronic pain patient. But I am now much more aware that when I land in those periods where a lot is happening around me, that I have to take extra care of myself. It is precisely during those periods that I have become really sharp in choosing on and off.

What I want

As I've gotten older, I've gotten better at asking myself, does this make me happy? Is it worth the pain of life? Or is it something I have to do and know will give me a few miserable days afterwards? Can I say no and opt out? Do I want to opt out and why?

I have learned the hard way that 120 km per hour is not the solution for me or for others. I have become incredibly aware of doing something that is important to me, that makes me happy, and that makes me forget time, place, pain and worries. In a way, it compensates for the many tasks that I may not feel like doing so much. That I have to do. But it is still a conscious choice in my everyday life.

Everyday life is what I like best. It's divided into tasks and breaks. That's where I do what I have to do and what I want to do. Just like everyone else. The arthritis hasn't changed that. In my everyday life, there are just a lot more breaks now than before. Breaks where the pace slows down. I've also learned to slow down when I don't have a break. I notice and feel life.