When I started feeling bad and had no idea what was wrong with me, I thought I could go to the doctor and they would figure it out. There would be a shot or a pill and all would be fine. Life would return to normal.
Fast-forward months later and things were worse. Walking and talking at the same time was a challenge. Eating would result in an upset stomach that would last for days. Massive weight loss occurred without any actual attempts at losing weight. Sleeping was constantly interrupted with pain. Even eye-blinking with dry eyes was uncomfortable.
During this time, the most active thing was sitting — on the bed, on the sofa. And then there was lying down — on the bed, on the sofa. There was no working.
The answer had been found to the problem and it was lupus. There was no controlling the diagnosis, the energy levels, the pain levels, or the mounting doctor bills. And there really is nothing fun about feeling or being unexpectedly completely out of control.
If you are in a similar situation, you know this alone is overwhelming because we spend a great portion of our lives believing we are in control. To have so much spiral all at once is an experience, to say the least.
In order to find a little sanity, some order must be restored. First, find something you can control. That sounds crazy, but it’s true. We want to be in charge, so this takes care of that need. Next, it gives you something to take your mind off the things you can’t do anything about; it allows you to put your focus elsewhere. Lastly, it allows you to get creative because when all the things we think are really important are up in the air (financial, physical, mental, family, professional and even our spiritual lives are being questioned by us during times of illness), the only thing left is something creative.
If you can be creative while sitting or lying, even better. Many people turn to adult coloring books. The designs are so intricate that you can be distracted for hours. Knitting is another favorite. I also started a business from my sofa. It allowed me to do a lot of research, listen to podcasts, watch YouTube videos and even take a few online courses that went at my pace. On the days you feel up to it, you’re able to move at your pace.
This disease is something you can’t control. Trust me, when you get a diagnosis after your life has been put on hold through no fault of your own, doing something you have complete say over is quite comforting and helps bring sanity into your world.
What creative things have you been putting on the back-burner? Now is the time to learn and reclaim control.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.