Saturday, July 10, 2010

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Fibromyalgia, Chronic Fatigue Syndrome, Asthma, Migraines, Trigeminal Neuralgia, Hypothyroidism, TMJ, Anxiety.

2. I was diagnosed with it in the year:
Migraines 2004, Anxiety 2005, Chronic Fatigue 2007, Fibromyalgia 2008, Trigeminal Neuralgia 2009, Asthma 2009, TMJ 2010, Hypothyroidism 2010.

3. But I had symptoms since:
Some of them for as long as I can remember. I can't remember them all now though.

4. The biggest adjustment I’ve had to make is:
not being able to go out and do things I used to be able, not being able to do the things my friends do, etc.

5. Most people assume:
that it's all in my head, that i'm making it up, that it's not real, etc.

6. The hardest part about mornings are:
Waking up and actually staying awake, getting out of bed, getting ready for the day.

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

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

9. The hardest part about nights are:
not being able to sleep, being in pain.

10. Each day I take __ pills & vitamins. (No comments, please)
I take 11 different prescription meds.

11. Regarding alternative treatments I:
go to acupuncture and the chiropractor when I can afford it, I also love reiki but can never afford it.

12. If I had to choose between an invisible illness or visible I would choose:
I'm not sure.

13. Regarding working and career:
I've tried and failed. Looking for something easier on my body.

14. People would be surprised to know:
That I DO NOT like having to rely on other people for things.

15. The hardest thing to accept about my new reality has been:
that it's not going to go away. That this is something I have to accept and live with for the rest of my life. That life is never going to be the same again.

16. Something I never thought I could do with my illness that I did was:
still have at least a bit of a life.

17. The commercials about my illness:
makes me so mad. They act like this medicine cures it and then you'll be fine. WRONG!

18. Something I really miss doing since I was diagnosed is:
going out and doing something with my friends or whoever. I can barely do it now, and when I do, I sure pay for it!

19. It was really hard to have to give up:
my life. Or at least the way it was.

20. A new hobby I have taken up since my diagnosis is:
talking more to my friends and family. Not really a hobby, but its true.

21. If I could have one day of feeling normal again I would:
Hang out with friends and family and have a BLAST!

22. My illness has taught me:
to live life to the fullest, treasure every moment, and help others the best you can. Sometimes all someone needs is a helping hand.

23. Want to know a secret? One thing people say that gets under my skin is:
You just have to (insert something crazy). It's all in your head. (Insert something else here) will cure it.

24. But I love it when people:
when believe I am sick, and treat me that way.

25. My favorite motto, scripture, quote that gets me through tough times is:
I don't know, I have a few.

26. When someone is diagnosed I’d like to tell them:
to do lots of research because doctors DO NOT know it all. And find help and support, it's what will get you through this.

27. Something that has surprised me about living with an illness is:
how hard it is, and yet how it's changed me. And how I've made some amazing friends through the ordeal

28. The nicest thing someone did for me when I wasn’t feeling well was:
just believe me, know I'm not making it up, and helping me in any way possible.

29. I’m involved with Invisible Illness Week because:
I want people to understand that just because someone doesn't look sick, it doesn't mean that they aren't!

30. The fact that you read this list makes me feel:
really good. I hope you understand better now. Thanks.


  1. I totally understand!!! I have a cousin who seems to think I sleep too much and that is my problem. Hmm, I don't sleep, that is one of the problem. Oh, yeah, and when she came with me to a fibro event, everyone else there could walk on their own, except me and they were all bubbly and happy and didn't seem that much in pain. There was about 50 people there with fibro and since there was a lot of standing and walking, of course, people who can't do that, didn't go. I was not happy with the cousin.

  2. Hi Sarah,
    Thanks so much for visiting my blog and signing in to be a follower! I have four now! : ) I love this most recent blog! Boy, can I relate to so many! I especially liked #10- don't worry, I have you beat with 16 prescribed! And, #15 hit me hard. I am still in denial I guess. Its so hard for me to accept that this is it. That it's not going to slowly go away and give me back my life. I don't know what to do with myself.

    Thanks for your comments, Sarah. Its nice to know someone is actually reading!

    Oh, I almost forgot---fibro fog---I was reading your other blog and I wondered how your PTSD work is coming along for you. I will pray for you. My brother fights that day in and day out. I see how hard it is.

    Soft hugs,

  3. Hi Sarah, I can definitely relate to a lot of what you wrote about. My illness journey began when I was 22, and now 22 years later I've been living with fibromyalgia and chronic fatigue for six years. It does really change your life in ways you would never anticipate: some bad, some ugly and some good.

  4. This is a great list of items to think about and share with your FMily. So many of us can relate to the challenges we all face, though we all have different lives, different problems, and different coping mechanisms. I hope we can learn from each other to do the best that we can.

  5. My answers were the same/very similar for #8, 17 and 26!