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30 Things About My Invisible Illness You May Not Know

02 Sep 14
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Next week (8 – 14 September 2014) is Invisible Illness Awareness Week. I will share my ‘Just One‘ story with you next week. Today I’m completing the 30 Things Meme.

30 Things About My Invisible Illness You May Not Know

  1. The illness I live with is: Pelvic Congestion Syndrome, Fibromyalgia, ME/CFS, plus several other conditions (asthma, osteopenia, allergies, etc)
  2. I was diagnosed with it in the year: 2013 (asthma and allergies since early childhood)
  3. But I had symptoms since: my whole life
  4. The biggest adjustment I’ve had to make is: redefining what success means to me and what I can realistically achieve in any set time period.
  5. Most people assume: That pain and fatigue is ‘normal’ and that it is manageable.
  6. The hardest part about mornings are: Getting Started…
  7. My favorite medical TV show is: This varies a lot but at the moment, One Born Every Minute
  8. A gadget I couldn’t live without is: My food processor… it makes making meals easier
  9. The hardest part about nights are: The pain
  10. Each day I take pills & vitamins. (No comments, please) – this is likely to go up again soon thanks to the low bone density.
  11. Regarding alternative treatments I: consider all options and try out anything that seems reasonable
  12. If I had to choose between an invisible illness or visible I would choose: This is difficult, but I think I’d say stick with what I know…
  13. Regarding working and career: I don’t know what is happening anymore… everything’s been on hold for well over a year now and I haven’t really made much improvement recently.
  14. People would be surprised to know:  I’m not depressed! I’ve managed to keep a positive frame of mind the majority of the time.
  15. The hardest thing to accept about my new reality has been: The uncertainty. 
  16. Something I never thought I could do with my illness that I did was: Raise $,7500 to publish the Foggy Frog picture book (still in progress).
  17. The commercials about my illness: I haven’t seen any for the main ones.
  18. Something I really miss doing since I was diagnosed is: Walks/Hikes with my husband.
  19. It was really hard to have to give up: Control. I never know what I’m going to be like and I can’t do everything I’d like to any more. My ‘ideal’ timelines for things like starting a family and major holidays have all gone out the window.
  20. A new hobby I have taken up since my diagnosis is: Blogging and sewing
  21. If I could have one day of feeling normal again I would: Go on a hike with my husband and have a lovely dinner out.
  22. My illness has taught me: To listen to my body and be more assertive with what I need/want.
  23. Want to know a secret? One thing people say that gets under my skin is: Everyone gets tired/sore
  24. But I love it when people: Visit me at home for games/a meal.
  25. My favorite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them: Listen to your body and do what is best for you. 
27. Something that has surprised me about living with an illness is: I’m able to cope with much more pain and exhaustion than I thought was physically possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Make me breakfast in bed and gave me permission to just rest.
29. I’m involved with Invisible Illness Week because: I feel it is important to raise awareness of what people actually go through. These illnesses aren’t really well understood in the general public and this is an important first step in creating a more understanding community.
30. The fact that you read this list makes me feel: Grateful. You have taken the time to try and understand a bit better what it is I go through on a day to day basis.