Meme 30 things about my invisible Illness

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http://invisibleillnessweek.com

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

Myofascial Pain Syndrome, Fibromyalgia , Degenerative Disc Disease, Irritable Bowel Syndrome,  Supra-ventricular Tachycardia, Obsessive Compulsive Disorder, Vitamin D and Potassium deficiency

2. I was diagnosed with it in the year:

2007

3. But I had symptoms since:

2005

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

Pacing myself to make my energy levels last throughout the day.

5. Most people assume:

I am lazy and don’t want to work.

6. The hardest part about mornings are:

The first fifteen minutes , getting out of bed, and moving around.

7. My favorite medical TV show is:

Rush! lol. Right next to House

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

My phone alarm, I set it often to remember medication times.

9. The hardest part about nights are:

Getting actual sleep. Restorative sleep is fleeting. I can fall asleep but staying asleep and then getting back to sleep in the early hours of the morning. that’s rough.

10. Each day I take _23_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: 

Have done many of them, it becomes what can and can not afford. Chronic means I will always need them.

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

Visible.

13. Regarding working and career:

I really wish I could work even part time and be the fully involved parent my daughter deserves. 

14. People would be surprised to know:

I get really annoyed at my body when all I can do is lay down.

15. The hardest thing to accept about my new reality has been:

I am not sure I have just one thing. It is a daily job to find acceptance. Some days I am better at it than others.

16. Something I never thought I could do with my illness that I did was:

Resume going on long walks and hikes regularly.

17. The commercials about my illness:

Are absolutely ridiculous. Even with medication there is pain, and then there are flares. It isn’t a magic pill. What works for one person won’t always work for another.

18. Something I really miss doing since I was diagnosed is:

Having a career of some sort outside of the home.

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

My wish for a second child.

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

I really haven’t started any new hobbies. I have pursued some of my interest a bit more.

21. If I could have one day of feeling normal again I would:

I would probably want to get the house completely clean all at once and still have the energy and ability to take my daughter to go play somewhere. 

22. My illness has taught me:

Patience and to slow down.

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

Say feel better. I know you mean well. I really do. It is just not a reality. It just really annoys me.

24. But I love it when people: 

When I am having a really good day. Low pain and really upbeat!

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

Never give up.

26. When someone is diagnosed I’d like to tell them:

It really is not the end of the world. There are lessons to be learned.  

27. Something that has surprised me about living with an illness is:

How much my perspective has changed on so many different areas. The health care system, other peoples struggles, so many things.

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

They didn’t give  me a choice. I was told to rest and my daughter was taken care of. 

29. I’m involved with Invisible Illness Week because:

We need more awareness. 

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

Amazing!

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2 responses »

  1. I’ll try to remember that you don’t like anyone to say “feel better!” I just wish there were hopeful, comforting words to say to someone with chronic illness. Our vocabulary is inadequate.

    Like

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