NICIAW - Fibromyalgia, Meniere's Disease

Izebell writes:

1. The illness I live with is:
PTSD, Fibromyalgia, Meniere's Disease, Tinnitus, Joint Hypermobility, Carpal Tunnel, Arm/hand nerve impingement, DDNOS, chondromalacia

2. I was diagnosed with it in the year:
Meniere's, tinnitus - 1995
Fibromyalgia - 2000
PTSD - 2005, 2006, 2011 (different docs)
the rest 2012
Chondromalacia - 1979

3. But I had symptoms since:
Fibro - Not sure
PTSD - 1970
Meniere's/tinnitus - 1995
Joint stuff - 1974
Carpal tunnel/nerve issues - 2006
DDNOS - 1976 (not really sure)
Chondromalacia - 1973

4. The biggest adjustment I’ve had to make is:
Giving up the things I enjoy doing and making sure I have a few days of rest built in after a busy day.

5. Most people assume:
That I am either just fine or complain a lot

6. The hardest part about mornings are:
Waking still feeling exhausted

7. My favorite medical TV show is:
Untold Stories of the ER

8. A gadget I couldn’t live without is:
My braces

9. The hardest part about nights are:
Not sleeping and being too exhausted to interact with My Beloved. There's nothing left for him.

10. Each day I take __ pills & vitamins. (No comments, please)
8 RX and 6 vitamins

11. Regarding alternative treatments I:
I have tried herbs, chiropractic, massage therapy, acupuncture, diet

12. If I had to choose between an invisible illness or visible I would choose:
Visible as people can then see something wrong and are more willing to help out

13. Regarding working and career:
I am probably going to have to stop working soon as my hands can't do it any more. Because of the fibro, it takes about 2-3 times longer for me to heal from surgery and I am having my right hand/arm fixed later this year.

14. People would be surprised to know:
How many illnesses I have.

15. The hardest thing to accept about my new reality has been:
The loss of social interaction due to the inability to participate in my favorite hobby

16. Something I never thought I could do with my illness that I did was:
Go on almost all rides at Disneyland - Tower of Terror is the best! (the virtual reality ones are out, however)

17. The commercials about my illness:
Don't exist

18. Something I really miss doing since I was diagnosed is:
Bowling but my body just can't do it any more

19. It was really hard to have to give up:
Quilting as it kept me sane and brought me joy.

20. A new hobby I have taken up since my diagnosis is:
Haven't found it yet as most involve my hands

21. If I could have one day of feeling normal again I would:
Hike a local mountain - 4 miles up and I did it once

22. My illness has taught me:
That God is in control and my strength and support come from Him. All others will fail me.

23. Want to know a secret? One thing people say that gets under my skin is:
You just need to exercise

24. But I love it when people:
Say "You don't look it!" when I tell them my age. I also like hearing "I understand".

25. My favorite motto, scripture, quote that gets me through tough times is:
I can do all things through Christ who gives me strength." Phil. 4:13 My life verse

26. When someone is diagnosed I’d like to tell them:
It can get better and you won't always feel like this.

27. Something that has surprised me about living with an illness is:
That pain is just a part of life and it's usually in the background except right now.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Bring us meals

29. I’m involved with Invisible Illness Week because:
Millions of people suffer and the public needs to be educated so they will stop saying stupid stuff.

30. The fact that you read this list makes me feel:
Validated

NICIAW - Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypthyroidism

This post comes from Sola
1. The illness I live with is: Migraines, PTSD, Depression, Alcoholism, Fibromyalgia, Sleep Apnea, Graves Disease, Hypothyroidism

2. I was diagnosed with it in the year: Migraines: 1994, Alcoholism PTSD and Depression: 2004, Fibromyalgia and Sleep Apnea: 2007, Graves Disease and Hypothyroidism: 2010

3. But I had symptoms since: as long as I can remember.

4. The biggest adjustment I’ve had to make is: Learning to ask for help, accepting that I can't be totally self-sufficient, and lowering my expectations for what I can do in a day.

5. Most people assume: I'm young and healthy

6. The hardest part about mornings are: Getting out of bed when I'm in pain and my body doesn't want to move

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: Pill Sorter

9. The hardest part about nights are: Being alone with memories of my abuse and convincing myself to go to bed when that's where I was hurt.

10. Each day I take __ pills & vitamins. (No comments, please) 22-32

11. Regarding alternative treatments I: get massage, see a chiropractor and meditate. I think it's frustrating that insurance doesn't pay for the things that help me the most.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: I haven't been able to work in 18 months. I miss my job, having somewhere to go every day where I felt useful and could help people. I'm in school, but I don't know if I will ever be able to work again. I hate it when people ask me how my job is going because I feel so ashamed that I am not able to work.

14. People would be surprised to know: I dream of hiking and rafting the Grand Canyon some day, but don't know if I will ever be able to.

15. The hardest thing to accept about my new reality has been: That I'm too sick to be able to hold down a job and show up every day.

16. Something I never thought I could do with my illness that I did was: Learning to stand up for my needs with doctors. Getting over my fear of needles and talking about really intimate body functions.

17. The commercials about my illness: make it sound like I could just take a pill and make it all better. Don't exist for PTSD, migraines, Graves disease or hypothyroidism.

18. Something I really miss doing since I was diagnosed is: Yoga, kayaking, hiking, swimming on a team,

19. It was really hard to have to give up: my job

20. A new hobby I have taken up since my diagnosis is: Knitting

21. If I could have one day of feeling normal again I would: Go White Water Rafting

22. My illness has taught me: To appreciate every day and the little things. Not to take anything for granted

23. Want to know a secret? One thing people say that gets under my skin is: That people on public assistance are lazy

24. But I love it when people: Listen. Sit with me when I cry. Give me hugs. Acknowledge how much I have been through. Tell me I'm a strong survivor, brave or that they admire me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Somebody told me that the darkest hour comes right before the dawn,
And I will find my way back to myself if I could just hold on,
Hold on,
To the light.
And it's going to be all right.
I know it's going to be all right.
Cuz love is on your side.
Don't fear your life.
Cuz it's going to be all right."
  ~"Dawn" by Gina Bredlove (it's a song)

26. When someone is diagnosed I’d like to tell them: Just live in today

27. Something that has surprised me about living with an illness is: that everything I go through makes me stronger

28. The nicest thing someone did for me when I wasn’t feeling well was: When my girlfriend tells me she loves me and wants to be in my life despite the fact that I'm not always able to do fun things.

29. I’m involved with Invisible Illness Week because: I want people to stop and think that every person you meet is going through something and doing the very best they can with what they have.

30. The fact that you read this list makes me feel: Hopeful that someone will work to make more resources available to struggling people.

NICIAW - Fibromyalgia

This is from Twich.  Twich lives with Fibromyalgia.

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 2010

3. But I had symptoms since: 1984

4. The biggest adjustment I’ve had to make is: trying to pace myself.

5. Most people assume: I'm just lazy and flaky.

6. The hardest part about mornings are: Not feeling refreshed and the pain caused by morning stiffness.

7. My favorite medical TV show is: Mystery diagnosis.

8. A gadget I couldn’t live without is: The iPod touch app that keeps track of my meds.

9. The hardest part about nights are: Trying to sleep.

10. Each day I take: 8- 12 pills & 2 vitamins. (No comments, please)

11. Regarding alternative treatments I: Use various types and believe in most alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I may have to quit, if I can keep on with my job, I've been told I need to have a "Modified work description" Meaning drastically less hours and responsibilities than I'm used to.

14. People would be surprised to know: My pain level is significant and constant, I just don't talk about it often.

15. The hardest thing to accept about my new reality has been: That it affects EVERY aspect of my life, both mental and physical.

16. Something I never thought I could do with my illness that I did was: maintain a social life.

17. The commercials about my illness: Don't really cover a fraction of what this illness is really like.

18. Something I really miss doing since I was diagnosed is: 4 hour walks with friends.

19. It was really hard to have to give up: Pushing my limits.

20. A new hobby I have taken up since my diagnosis is: It's not new, but I paint more.

21. If I could have one day of feeling normal again I would: Go got a run or long walk.

22. My illness has taught me: To slow down sometimes and take care of myself.

23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!"

24. But I love it when people: say "I understand, that must be hard."

25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt, overcome.

26. When someone is diagnosed I’d like to tell them: Don't give up, it gets easier to live with.

27. Something that has surprised me about living with an illness is: How different it feels when you have a reason for feeling this way.

28. The nicest thing someone did for me when I wasn’t feeling well was: When my little sister drew me a get well picture

29. I’m involved with Invisible Illness Week because: It's important to spread awareness- Just because you can't physically see it, doesn't mean it's not just as debilitating.

30. The fact that you read this list makes me feel: Like I may have made a difference.