What’s Your Story?

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.

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