Monday, September 12, 2011

30 Things About My Invisible Illness You May Not Know

Today I am blogging (along with hundreds of others) on the topic of "30 things you may not know about my illness." This week is Invisible Illness Awareness week and this is just one of the many activities, talks, etc that those affected by chronic illness can participate in.

1. The illness I live with is:
Ehler's Danlos (Hypermobility Type)

2. I was diagnosed with it in the year:
Today! I was diagnosed September 12, 2011! It took me seven years and dozens of doctors, but I have my diagnosis!! Today really is the first day of the rest of my life!

3. But I had symptoms since:
Birth. But, they only started to affect me about seven years ago.

4. The biggest adjustment I’ve had to make is:
Learning to pace myself! I'm such a type A girl and it's hard to have to sit by the sidelines while things don't get done, or others have to do them. I'm learning though, because as I get older the more I pay for pushing myself. It's just not worth it!

5. Most people assume:
 I think a lot of people are in denial that I'm really sick. I have friends who don't call anymore. And friends who don't want to, or don't even try to accommodate my illness. I'd love for a friend to just stop by and visit sometime. But, even then, I get tired easily and it's hard to tell people to leave (especially when you wanted them there so badly!) My church family has disappointed me the most. Months have gone by and I haven't heard from anyone. Just the other day, I had a phone call from a church member. My excitement turned to disappointment when I realized I was just another person on a list she had been given to call regarding a building pledge drive dinner.

6. The hardest part about mornings are:
Getting up when I haven't had enough sleep. I really need a lot of sleep, but I rarely get it. Some of that is caused by not being able to get comfortable in bed and, at times, some pretty bad pain.

7. My favorite medical TV show is:
Oh, do I have to just pick one? I don't think I can. I like Mystery Diagnosis because of the awareness it has brought to rare, or difficult to diagnose illnesses. But, at times I don't think it is very accurate. I also like House. I love how he always seems to figure things out. Of course, it's getting a bit old after seven years.

8. A gadget I couldn’t live without is:
My laptop! Okay, yes I could live without it, but I wouldn't want to. For one, I use it to work from home. Without it, I would have to go into my office more often. Also, it keeps me connected to my friends, family and others who are dealing with chronic illness. And, lets not forget the wealth of knowledge right at our fingertips. It's like having a library in your own home!! And, I love, love the library!

9. The hardest part about nights are:
Feeling alone and scared. It seems as though the pain, anxiety, and fear creep up on me at night. I think that's one reason why I love my computer so much. I can get on facebook, or a message board and instantly be connected with someone else who "gets it".

10. Each day I take __ pills & vitamins.
Really, not very many. Probably about 9 or 10.

11. Regarding alternative treatments I:
Would be willing to try alternative treatments if I felt they had some proven benefit and with my doctors okay. As long as they are within reason, of course. I am not going to eat bat wings!!

12. If I had to choose between an invisible illness or visible I would choose:
Visible. Because, then, I feel as if people would at least have proof of your illness.

13. Regarding working and career:
I am happy that I have something to do that I enjoy and that I'm able to do from home. I am a Genealogical Archivist and I edit, organize and enter data into a local family history database.

14. People would be surprised to know:
I've never seen Star Wars, Lord of the Rings or any Harry Potter Movie! Really, I haven't. Um, seriously, I guess there are probably some people who would be real surprised to know how sick I really am. I hide it well.

15. The hardest thing to accept about my new reality has been:
Missing out on family vacations and other activities. Sometimes, I feel as if I'm an outsider looking in on my own family. You really can be lonely in a crowd.

16. Something I never thought I could do with my illness that I did was:
Find a job that would accommodate my needs. I am so blessed to be working for a small, family owned company.

17. The commercials about my illness:
Are invisible! Well, they don't have any!

18. Something I really miss doing since I was diagnosed is:
Being able to go shopping with my friends. I just can't keep up anymore.

19. It was really hard to have to give up:
My mobility. It's hard to get around. I have to use a wheel chair for long outings.

20. A new hobby I have taken up since my diagnosis is:
I wouldn't say I have just taken it up, rather I've gone back to it. Reading. I've always been a reader, but my husband gave me a Kindle for Christmas last year and I love it! It's light weight, easy to see and I feel as if I have a whole library in my hand. I have been able to find so many free books, many were books that I wouldn't have ordinarily read. I have been introduced to a variety of genres and have really enjoyed them.

21. If I could have one day of feeling normal again I would:
Go for a long walk by the river. Then, drive to a nearby, picturesque town that has gift shops, small restaurants, and walking trails. I'd end my morning with a picnic on the river.

22. My illness has taught me:
That we never know what life will bring our way. And, to make the best of whatever it is you are dealing with.

23. Want to know a secret? One thing people say that gets under my skin is:
I guess it's when people act as if they know what a person can and cannot do. They say things like "if they would just try harder, then...."

24. But I love it when people:
Ask me if there is anything they can do for me. I'm so bad about asking for help. Note to self: Must work on that.

25. My favorite motto, scripture, quote that gets me through tough times is:
Philippians 4:13 "I can do all things through Christ who strengthens me"

26. When someone is diagnosed I’d like to tell them:
Get your information from a reputable source. For me, it would be the Ehler's Danlos National Foundation. So much stuff out there on the Internet is either out of date, or just plain wrong. Also, get a support team in place. Online friends with the same illness, doctors, therapist, family, friends, and church family can all help.

27. Something that has surprised me about living with an illness is:
How much support I have been able to find online. I have met some awesome people with chronic illness and that has made such a difference in my life!

28. The nicest thing someone did for me when I wasn’t feeling well was:
My best (and late) friend, came over and cleaned my house for me. It meant so much! I hate having a dirty house!

29. I’m involved with Invisible Illness Week because:
I want to bring awareness to not only to my illness, but other illnesses that are invisible. I hope that the more people know, the more they can reach out and try to help those in their lives who are dealing with a chronic, invisible illness.

30. The fact that you read this list makes me feel:
Like "You like me! You really, really like me!".... And, that maybe you have learned a little bit about not only my illness, but other invisible illnesses.

Be sure to follow the link for more information on Invisible Illness Week. Tomorrow I will write about my diagnosis day!!

Have a great day!

Philippians 4:13

New King James Version (NKJV)
13 I can do all things through Christ[a] who strengthens me.

1 comment:

  1. Thank you for sharing this! And congratulations on finally getting a diagnosis! It was such a relief for me to have an answer, something specific to focus my energy on.