30 things – invisible illness awareness week

Stephenie Hameninvisible

This week is Invisible Illness Awareness WeekNow that I am living with and dealing with Fibromyalgia, I want to help support others that are fighting similar and even more difficult battles than I am.

Part of doing that is sharing my story:

30 Things About My Invisible Illness That You Might Not Know:

1. The illness I live with is:  Fibromyalgia

2. I was diagnosed with it in the year: 2014

3. But I had symptoms since: before 1999

4. The biggest adjustment I’ve had to make is: Slowing down and saying no

5. Most people assume: That there is absolutely nothing wrong with me.  I must be faking it or making it up at convenient times.  It is all in my head.  I need to get over it and move on.

6. The hardest part about mornings are: getting up when the alarm goes off.  Most days I need at least 2 more hours of sleep, no matter what time I go to bed.  Just getting up and getting going within a set scheduled time is often hard.

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

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

9. The hardest part about nights are:  wanting to get more accomplished around the house after work than my body will allow.  I want the dishes all done, the house picked up, and the bathroom clean.  Most nights, however, I am so wrecked by the time I get home from work that those things don’t happen or fall onto my family.  I want to do things that I just cannot do.

10. Each day I take __ pills & vitamins. (No comments, please) 8-12 depending on the day and my symptoms.

11. Regarding alternative treatments I: meditate multiple times a day and I have started to see a Reiki practitioner as well.

12. If I had to choose between an invisible illness or visible I would choose:  something visible.  I wouldn’t feel the constant pressure to justify my situation.

13. Regarding working and career:  I still work a full time job and I work part time as an artist.  Some days are fine.  Other days, between the physical part of just going and being there, the mental strain that occurs, and stress, well… needless to say it is not a pretty picture.  The hardest part is the fogginess that I get, making concentration and attention difficult some days.

14. People would be surprised to know:  what it takes to make it through some days and what is happening on the inside during the most mundane moments in my day.

15. The hardest thing to accept about my new reality has been: the limitations it has put on me and my body.  I am a go-go-go kind of person.  Stopping early in the evening or taking a nap on the weekend feels like failure.

16. Something I never thought I could do with my illness that I did was: climb the stairs back up the stairs at Starved Rock one weekend.

17. The commercials about my illness: don’t really tell you much.

18. Something I really miss doing since I was diagnosed is: being more active and more productive.

19. It was really hard to have to give up: feeling the pressure to say yes all the time.

20. A new hobby I have taken up since my diagnosis is: more reading.  I have always loved to read, but often didn’t have time.  Now that I find myself slowing down more, I am reading more and I love that.

21. If I could have one day of feeling normal again I would: go hiking, chase after a kite, swim in a lake, and just chase my kids around the park.

22. My illness has taught me: to be more patient – with myself and with others.

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

24. But I love it when people: ask questions…  the more people know, the more that they can understand.

25. My favorite motto, scripture, quote that gets me through tough times is: “You can’t move mountains by whispering at them.”  P!nk

26. When someone is diagnosed I’d like to tell them:  It does get better.  It never goes away, but it does get better.

27. Something that has surprised me about living with an illness is: just how exhausting dealing with it can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: send me to bed.  My husband has been amazing and supportive.  He will often look at me and say enough – go to bed.  He will let me nap and never makes me fell guilty or bad for it.  He never ceases to amaze me.

29. I’m involved with Invisible Illness Week because: I want others to know they aren’t alone and I want those that know me to better understand what I deal with daily.

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

 

These questions are being answered by people all over the world this week, all dealing with a variety of invisible illnesses.  Take a minute this week and send some love to the people in your life dealing with something that you might not see or understand.  Ask them how they are doing and tell them that you support them.  Show them that they are not alone.


Comments

30 things – invisible illness awareness week — 2 Comments

  1. My daughter in law had to deal with this illness and I know it is tough for her. She is picture of health on the outside, but I know she is hurting on the inside. Thanks for sharing this most insightful message. I hope to get to one of your workshops when you present at the Regal Find next time. Take care!

  2. You address this subject so well, I had a knee replacement in June, You could see the bandage and even when I came back to work people would say don’t get up-just point the way. However, my other leg has not got enough blood since 1996 when a doctor cut the artery. It hurts every day. I am exhausted every day, but no one sees. Just know that I think of you often and know that you are not alone.

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