What Can I Say?

Well this weekend was a challenge for me. It was the first time that I had so many people who know and love me in one place. It was our hometown’s festival and so I was asked a lot about how I was feeling. I was very reluctant to say how I really felt because I wasn’t feeling that great. I was very weak and tired. I ended up telling people that I wasn’t doing amazingly. I’m sure that what I said to people seemed like I was seeking sympathy…and I truly sad that it probably appeared that way. My intention was only to show that I do have off days and I won’t be perfect all of the time. 

I found that when someone asked me how I was doing, they really didn’t want the honest answer because the answer wasn’t as positive and it should have been in their mind. When I answered honestly I saw the “pity” face from people I rarely talk to or see more than I was prepared for this weekend. I don’t think people realized how bad it truly can be and when I explained my symptoms. That being said, I really appreciated everyone asking how I was doing and I know that the majority of everyone really did care about how I was doing. In case anyone is interested I found a list of ten things not to say to someone with Syringomyelia on several websites. I tweaked some of the responses because they didn’t represent how I felt. The original list can be found here: http://www.medhelp.org/posts/Chiari-Malformation/10-things-NOT-to-say-to-some1-with-Chiari-or-Syringomyelia-or-related-conditions-for-that-matter/show/1501770

10. Must be nice to sleep all day. [Sleep is a luxury with as much pain as I have. You can tell I don’t sleep by looking into my eyes.]

9. You’re lucky you don’t have to work [everyday]. [I do work, but there are days that the pain and migraines are so severe that driving an hour and a half to work is not logical. I do continue to telework and use my blackberry/gotomypc while I’m home.] 

8. I can relate. [Well actually, it’s unlikely that you can relate completely. Yes, headaches are not fun. I’ve had the same one for six months.]
7. Why don’t you just take something? [What else could I possibly take? I am on nearly every medication known to mankind for my disorder. I am prescribed nine times the normal dose for one of my medications.]
6. You should just try harder. [Try harder to do what exactly? Do you think I can "try" to be healthy?] 
5. Just be positive. [I believe that I am being as positive as possible. I have a disorder that will likely cause me to be physically disabled and I will likely be in debilitating pain for the rest of my life…how would you react if it were you?] 
4. I think you just want attention. [Yep. I really want to feel pitied for my life. I take nearly 15 pills a day, writhe in pain, spend thousands of dollars for testing and treatment, and have no sleep just because I want you to notice me.]

3. It’s all in your head. [Actually, it’s all in my spinal chord. I had Chiari Malformation, yes it would be in my head, too.]

2. It could be worse. [Indeed it can and I constantly think about that fact. I pray every day that it does not get worse.]
1. But you look good, are you sure they diagnosed you correctly? [Thanks for the compliment…I wish they were wrong but the MRI’s and three doctors are likely not wrong.]

I just thought these were interesting to see and hopefully they don’t offend anyone. However they are pretty common to hear these days. At least now if you meet someone who has this Syringomyelia or a similar disorder you can NOT ask these questions or make these comments. I also found this on a chronic pain website and thought that they were interesting. If you know someone who has a chronic pain disorder please be sure to do some of these activities for them. I don't mean for you to do these things for me because luckily I have amazing support from my family. Encouraging words help, though. Find the original list here: http://chronicpainsite.com/MB/forum_posts.asp?TID=3081&title=ten-things-not-to-say-to-someone-with-chronic-pain 

10 Tips on HOW TO HELP Someone with a Chronic Illness

1. Listen without advising or judging.

2. Say, “I’m going to the store tomorrow. Is there anything I can pick up for you?”

3. Offer to take him/her to the doctor or dentist and do something fun afterwards.

4. Bring him/her flowers or a healthy dish.

5. Offer to take care of his/her kids for the day.

6. Give him/her a gift certificate for a massage, a pedicure or the movies.

7. Show up with cleaning products. Bring him/her a favorite beverage and a new magazine and tell him/her she isn’t allowed to help as you speed clean his/her house. Tell him/her you’ve seen it all and not to be embarrassed.

8. Buy him/her an encouraging book and include a bookmark with a note from you.

9. Give him/her a gift subscription to an encouraging magazine.

10. Have a “girly” day, visiting a craft show, having tea, getting your hair done, or seeing a “chick flick.” [Have a “manly” day by going to a car show, to Hooters, or something guys like to do…] 

Hopefully you all can gain a new perspective on chronic illnesses by reading this blog entry. Thanks again for all of the support and understanding through my treatment. I realize that many of you are unsure of how to treat me with this disorder; however, it is really important to me that you treat me just as you did before. I appreciate prayers, thoughts and encouragement...just don't put me on a prayer list or anything like that by name. By doing that it introduces the possibility for pity...I really don't want that. Thanks again!