Monday, January 14, 2013

Invisible Illness

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:   Fibromyalgia, pinched nerves in C6 &C7, peripheral neuropathy
 2. I was diagnosed with it in the year: 2011 & 2012
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: . Accepting my limitations and letting go of those things I can not do any longer
5. Most people assume: that just because I try not to show it, everything is fine with me.
6. The hardest part about mornings are:  knowing that once I can get up,  I will fight all day with the pain until I return to my bed when I get home.
7. My favorite medical TV show is: Greys Anatomy
8. A gadget I couldn’t live without is: My Iphone
9. The hardest part about nights are: Trying to get comfortable to fall asleep and knowing no matter how long I do sleep...it won't be enough
10. Each day I take  one day at a time...sometimes one hour at a time
11. Regarding alternative treatments I: am open to trying some but scared as some treatments(alternative or otherwise) make the pain worse.
12. If I had to choose between an invisible illness or visible I would choose: Invisible because I choose who knows.  At least this way, some of the time I can keep my privacy.
13. Regarding working and career:   Currently, I find it so very hard.  I honestly am not sure how much longer I can struggle through my days.  I am trying to get the accommodations necessary to continue working.  The last thing I want is to have to give up this part of my life.  Financially, it would cripple my family.  Emotionally, I would truly have to adjust as I have worked since I was 12 with a short period of that work being at home with my children.  I truly don't know how I would adjust but with my pain being at the level it has been and how much of a struggle it has been lately, I just may have to.  On a positive note, I've become an Independent Sales Representative with Avon in the hopes of having a business that works with my limitations.  Feel free to peruse my web site at www.youravon.com/prettyinpink   ;)
14. People would be surprised to know: the extent my life has changed from 2 years ago.
15. The hardest thing to accept about my new reality has been:  just how extensive my limitations have become.
16. Something I never thought I could do with my illness that I did was:   start to open up about it and find so many other people in my life that have it also.  Almost like a secret society that no one actually wants to be a part of but we are thrilled to find others that truly deeply understand exactly what you are going through.
17. The commercials about my illness: Can often be misleading causing some to think they know exactly what it is that I have.
18. Something I really miss doing since I was diagnosed is: spending time with my friends at karaoke
19. It was really hard to have to give up: the freedom of choosing what to do with a day in advance.  At this point, my answer is always " I would love to but we will see how I'm feeling that day and if I can, I will be there"
20. A new hobby I have taken up since my diagnosis is: sewing(when I can) and learning all I can about my illness & using the online support group I have found. www.fibromyalgiaconnect.com/
21. If I could have one day of feeling normal again I would: Its so hard to say with only one day...I would do whatever my children wanted ....I would get my entire house clean & all the laundry done...I would go out to karaoke with some friends(and try to get some new friends to come too)...I would dance...I would sing...I would have a few drinks....and yes, I would make wild, crazy, loud love to my man!
22. My illness has taught me: Enjoy what you have...today...don't dwell on what's lost...accept your limitations
23. Want to know a secret? One thing people say that gets under my skin is: Oh I've heard of that, you just need a good psychologist because it's caused by depression so it must be in your head. (And yes...I've had several people actually say this to me)
24. But I love it when people: recognize that I need help and just help without me asking. Bring home dinner to surprise me, do laundry & fold it without me asking, make sure the kitchen is clean so I can make dinner.  My daughter has been known to tell me, Mom, You can't do that, go sit down and let me help you.
25. My favorite motto, scripture, quote that gets me through tough times is: It's just a reminder to myself.  I've survived worse...I can get through this too.
26. When someone is diagnosed I’d like to tell them: 1. Do as much research as you can to learn about your disease.2. Find a support group either online or in person, You will need people that know exactly how you feel because unless they are living it, no one is going to fully understand it. 3. Listen to your body  If you don't, it will force you to.
27. Something that has surprised me about living with an illness is: how you find out who your friends are.
28. The nicest thing someone did for me when I wasn’t feeling well was: they told me to go rest and took care of making dinner & cleaning up the kitchen.
29. I’m involved with Invisible Illness Week because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively will make a difference.
30. The fact that you read this list makes me feel: thankful that you are trying to understand.  Thank you!