Deena Bingham
One of the ongoing issues that we face when having a chronic disease is overdoing it when we feel well. For those of us who are type A personalities to begin with, this is a very easy trap to fall into.
This is the trap that I seem to be spiraling into full speed at the moment. I spent years in and out of the hospital, never fully recovering before the next flare hit. This was very frustrating for me because I like to be busy, I get depressed when I have nothing to do. The constant struggle of starting over, again and again, was beginning to take it’s toll. Then, I started to slowly feel better, my medicines and supplements were working and the time between flares was getting longer. With my family and friends voices in my head telling me to not over do it, I started to add things back into my life last fall. I was elated to be able to do this. Still hesitant every time I said yes, there was always the constant worry that I would get an infection, flare and let people down. Each month I was one step closer to the year mark of not being hospitalized and, in turn, each month I added more and more activities to my schedule while trying to still maintain good health. Adding too much! Don’t get me wrong, I was and still am extremely happy that I am able to do this! I spent years not being a participate in life, only concentrating on my health. The down fall though is there is alway that shadow hanging over me that the other shoe is going to drop and I am going to get very sick again.
This shadow is hard to live with. All of you living with disease understand this. It’s hard to find the balance between wanting to be a part of the world, and living in a bubble. I choose not to live in a bubble and this sometimes gets me into trouble and causes me to flare.
It took me years to get to the point I am at now, to be able to be in the world again and to be normal, but I am not normal, I have a Lupus. We need to find the balance between disease and living. It’s not easy. If you’re like me, I feel guilty when I let people down. It’s very hard to tell someone that you’ve made a commitment to that you can’t help because your flaring and must stay home. It makes me feel unreliable and useless. I always feel like I am doing something wrong when I have to cancel.
My advice to you and myself is to keep it in perspective. Do what I am doing right now, join and be a part of something again if you feel well. Be a part of the world, but remember that sometimes we have to retreat back to our bubbles. Let people know that you have a disease when you are asked to do something and that there may be times you can’t be there. Be honest and open up front. Stop being so hard on yourself. God gives us the strength to handle anything, be strong and know that He is working everything for good according to His plan and you will feel better soon. Stop feeling guilt. You are of no use to your family, friends or anyone else if you flare or you’re not here. At the first signs of a flare, rest and talk to your doctor. Take care of yourself immediately so that you don’t end up in the hospital. Having a chronic disease is serious business, take care of yourself first and foremost and let all the other pieces fall into place around it. Remember, not everyone understands what it’s like to have Lupus or any other chronic disease. That’s okay, you do and you must do everything you can to stay healthy. Don’t fall into the trap of overdoing it. I know it’s hard, but always remember your first priority is to your health.
Once again, thank you for sharing my journey with me and being a part of my life.
God Bless you and keep fighting the good fight.
