". . . our stories are what make the difference, and if we can tell them honestly we can hope to help each other. In the end, we have nothing to offer each other but our stories." ~ Emma Lou Thayne

Wednesday, September 14, 2011

When "You look SO GOOD!" isn't a compliment

National Invisible Illness Week 
is underway! 
I chose a previous year's video to share. 
I hope you'll take the time to watch it. 
This year it is September 12-18, 2011 
Here is this year's theme. 
The invisible illness website has so much great information! 
Get informed! 
Learn more about your condition and ways to deal with it, 
as well as the stigma created from others. 
Do you care about individuals with an invisible illness?  
Learn HOW to BE THERE for your loved ones and friends!
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illness I live with is: Bipolar Disorder, Plantar Fasciitis, migraines, Thyroid Disease (I will focus on the Bipolar for these answers.) 
2. I was diagnosed with it in the year: 2003 
3. But I had symptoms since: 1983 - Hard to say... I assumed that life circumstances were to blame (and some of it could be attributed to that...) until I was diagnosed... even then, I was in denial for a few more years as it continued to progress.
4. The biggest adjustment I’ve had to make is: Recognizing my limitations and making a conscious effort to counter the negatives. 
5. Most people assume: I can "unthink" or get over it. It's a cry for attention or sympathy... (For the record, I had it for years before anyone knew, I downplay it as much as possible, I get away from situations when possible, and I don't want "pity"... but a little understanding that sometimes I just need to get away and I can't always DO everything that I sometimes can... would be nice. Did that make sense? LOL!!)
6. The hardest part about mornings are: functioning 
7. My favorite medical TV show is: House  (I loved Quincy when I was young... and Mental was an AWESOME show that I was really sad they only did one season!) If BONES counts... THAT would be my #1!! 
8. A gadget I couldn’t live without is: My IPOD... Helps my mind not race when I listen to audio books. 
9. The hardest part about nights are: Falling asleep... Insomnia... BIG TIME
10. Each day I take around 16 pills and vitamins... These are for different conditions and some are multiple dose, vitamins and Excedrine. I counted each individual one. ;p  (No comments, please)
11. Regarding alternative treatments: I was able to manage things somewhat in earlier years but it has progressed. I use a combination of alternative and medication. When I've tried to go off the meds due to the insistence of well meaning individuals, the outcome was nearly disastrous. I will not do that again. I choose to accept what this is and treat it responsibly, trying to be the least of a burden on my loved ones as possible. 
12. If I had to choose between an invisible illness or visible I would choose: It's hard to say. There is more compassion and understanding for visual illnesses... but it's also nice to pretend normalcy when able. ??? 
13. Regarding working and career: I handled working for many years with no issues. As time and condition progressed, it has become very difficult. I ran a bridal shop for a few years which did some serious unraveling. I am a photographer and in previous years I was doing a lot of shoots. Things got really rough and living up to everything I'd scheduled was quite taxing. I have minimized my load tremendously this year. 
14. People would be surprised to know: The stigma about bipolar is LIES! People can manage their symptoms to the point that they CAN have a fulfilling life. Not without challenges, but not the extremes that ignorance assumes. 
15. The hardest thing to accept about my new reality has been: that people's expectations of me remain the same as if it didn't exist. They think because my husband is "happy go lucky", ambitious, and outgoing... I should be, too. Sometimes I can be... Frequently I prefer being a hermit and get anxiety over change. One of my coping skills is to recognize when I need to get away from situations so as not to make things worse. Sometimes others don't understand that. 
16. Something I never thought I could do with my illness that I did was: ??? I can usually DO what I put my mind to... just not all the time. I have gained many talents through this disorder. When I get off on an idea, sometimes it becomes obsessive. LOL! OK... I guess the word is MANIC.... Like starting up a dress shop in SoCal! 
17. The commercials about my illness: seem to only be about drugs... It would be nice to see some about fighting the stigma. 
18. Something I really miss doing since I was diagnosed is: ??? They say ignorance is bliss... well, not in this case. I had a hard time with the diagnosis. I figured they had it WRONG for years. Then I educated myself more and learned how to recognize and avoid triggers... although it's progressed, I think being aware and taking care of it makes all the difference. 
19. It was really hard to have to give up: The theater!! I loved to perform! I can on occasions, but it's not consistent enough to be able to count on myself to be up to all the rehearsals and performances. The audition part gives me so much anxiety now... It's smarter just to go watch! LOL!! You know... bipolar IS a CREATIVE disorder and there are a LOT of performers that share this condition.  ;p 
20. A new hobby I have taken up since my diagnosis is: Photography. This was one of my obsessions and I took many courses and bought a LOT of equipment. Went semi-professional... OOPSIE... MANIC!  ;p
21. If I could have one day of feeling normal again I would: Take all my grandkids (there's almost 18) on an adventure!! 
22. My illness has taught me: I don't HAVE to be perfect or live up to other's expectations and that it's OK to say NO! 
23. Want to know a secret? One thing people say that gets under my skin is: What's the big deal? Get over yourself. or... You need to get off those meds, they are creating all your problems. or... Well I have a ____ with that so I know what you're going through. or... You should try _____   or... If you just ____ it won't be an issue anymore.  
The biggest ones... If you pray hard enough and have faith... or repent of your sins... you will be healed of this... REALLY??!! I REALLY WISH it were JUST that EASY!! *sigh* 
24. But I love it when people: give me a hug, understand without judgment when I'm unable to do something, and don't talk about me behind my back. I also love it when my feelings are considered. I hate feeling like everyone else's feelings are more important than mine.  :`(
25. My favorite motto, scripture, quote that gets me through tough times is: "A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is  worth keeping and with a breath of kindness blow the rest away." ~Arabian Proverb 
26. When someone is diagnosed I’d like to tell them: It gets better. Be patient through finding the right meds combination and dosage that works for you. It's not going to be perfect, but it's SO MUCH BETTER!! Hang in there!!  ((HUGS)) 
27. Something that has surprised me about living with an illness is: That taking responsibiltiy for yourself makes the world of difference to you and those around you. You don't have to be one extreme (mega manic - spending your family into bankruptcy, calling people in the middle of the night, acting out sexually, or being abusive to others...) or the other (mega depression - suicidal)! The roller coaster doesn't have to be mountains and valleys, but rolling hills.  MUCH BETTER! 
28. The nicest thing someone did for me when I wasn’t feeling well was: Give me a hug and be understanding. See? I'm easy to please. OH!! The best is when they stand up for you in the face of an ignoramus! LOL!! 
29. I’m involved with Invisible Illness Week because: It hits home with me! I would LOVE for people to become educated about these illnesses and stop being so ignorant in the things they assume, say and do. 
30. The fact that you read this list makes me feel: like you will make a differeance in this world! A change for the better... by thinking twice before believing stigma... by being more educated... by realizing that you don't have to FIX anything; sometimes just a hug and a good heart does a world of good. I believe others  dealing with an invisible illess, as well as myself aren't looking for SYMPATHY, we want more understanding and unrealistic expectations not to be placed on us. 
Awareness Wednesday Button 

5 comments:

Lemon-Aid said...

Hi Holly, I'm stopping by from Invisible Illness and want to thank you for sharing this meme with us. I have a loved one with Bipolar so I know it's not as easy as most people would like to think. It sounds like you've got a great attitude and are making the best of thing.

Wishing you wellness...

Paula said...

Darling girl, I know that you fight hard for yourself each and everyday. Its good to read your acceptance and accomplishments. Love to you

Cherie said...

Holly this was an amazing post. I do not have bi-polar but have suffered near dibilitating depression from time to time over the years, as well as a daily battle with OCD.
Everything you wrote was fabulous and so true!!
I almost feel like I appreciate life more than the average person because sometimes I have to work so hard at getting through a day, but I am truly grateful for each day.

Cherie said...

P.S. I forgot to say that I am so happy for you that you have found your way to live and prosper and be happy in life - Good job!!

Lori said...

Holly, you amaze me everytime I visit your blog. I love the awareness you share with your readers. I love your #5 and how you say that you don't want pity, but a little understanding. I also love how you share your heartfelt inner most feelings. Thank you for always telling it like it is and thank you for making a difference. I'm sending lots of hugs your way!

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