This blog post is interactive. I will tell you my story and I hope that my followers who have a chronic illness will want to share their story as well. Here are 10 questions I commonly get about my illness?
1. How are you feeling today?
This is a good question to ask someone with chronic illness. It shows a genuine interest. Today I’ve been dealing with more IBS issues and not many chronic migraine issues (though some). I was able to go with S. to the doctor today and visit our friend, but I felt a bit run down and tired. And I wasn’t able to go out tonight to see our “premarital” counselor.
2. What’s your illness?
For some people this question bothers them. They are more private, but I am an open book. I feel the more we share the more we can learn from one another. Primarily I have IBS, chronic migraines and sleep apnea. I also was born with a congenital heart defect that has to be monitored. I had to have a minor procedure (potentially to put a stent, but i didn’t need) this past spring.
3. How long have you had your illness?
I was born with my heart problem. I had three heart surgeries. The first one was at only ten days old. The second as 4 months old and the third at 6 months old. I have had two balloon catheters since that time. I developed IBS in middle school. It has progressively gotten worse since then. I developed migraines in middle school,but I would get one occasionally. They only became much worse after a car accident in 2009.
4. What do you do to take care of your illness?
This question is sometimes broken down or asked as, “how do you manage your illness?” I take a small dose of two medications. One I call my magic bean because it addresses migraines, IBS and my ADHD. I sleep with a CPAP. I also try to stay on or close to the FODMAP diet for IBS. In addition, I go to PT twice a week. I also get Botox injections. I also have routine visits with my doctor.
5. Which illness is the worst to deal with?
It depends on the day. I would often side with the migraines, but an IBS attack can be quite painful and awful. Perhaps, if it were an actual problem and not a potential problem I would say the heart problem.
6. How does your illness affect your work or school life?
I have to work from home. I had to give up a career that I loved and where I had finally found success. I LOVED my job. I am lucky however that there are options to work in my field from home – via online teaching and creating educational curriculum. I do, however, miss the socialization.
7. How does your illness affect your social life?
It makes it hard to go out with friends because I don’t know when I will have an IBS attack. I also don’t know when I will have a migraine. I sometimes promise friends I will see them, but then I don’t feel so good.
8. How do you cope?
I don’t really have an option. I try to find the small joys in life – getting out and seeing friends when I can, spending time with S., a ‘good’ day. I push myself hard but not too hard because the only thing scarier than being dead being dead is the lviing dead. I don’t want to be living dead.
9. How would your life be different if you didn’t have your illness?
Financially it would be a lot better. S. isn’t working right now and it would be quite nice if because he’s not that I could work more. Currently, to make it worse, I am between jobs. Also, I could even live in a foreign country and make a lot more money teaching ESL than I do here in the States. Also, my engagment to S. wouldn’t be so long (2 years) In addition, I could be more social with my friends.
10. Do you exercise? Drink water? Eat right? Sleep right?
I hate when people ask me these questions as if I haven’t learned the same self-care skills they have. Often I know them better than they do. It’s often said in a condescending way. I exercise currently due to PT. I ride my exercise bike and I do my PT exercises. I drink water – lots and lots of water. I eat a lot better than I used to. While it could be improved,if I ate right it wouldn’t take everything away. I do sleep at night but due to sleep apnea I don’t always get a restful night’s sleep.
So answer these questions about yourself – share your story.