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Monday, November 12, 2012

30 Things About My Illness You May Not Know

This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.

1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety


2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999


3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???


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

Acknowledging my physical limits, and accepting my feelings/emotions are valid. 

5. Most people assume:

I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
 

6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.

9. The hardest part about nights are:
Staying awake long enough to get everything done.

10. Each day I take 11-15 pills & vitamins.

11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.

12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.

13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.

14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.

15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.

16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.

17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.

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


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

20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach

21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.

22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.

23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.

-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.

25. My favorite motto, scripture, quote that gets me through tough times is:
Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.


26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.


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

I am more in touch with my body and my emotions now than I have ever been.

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

<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.

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

Well, I actually missed it. But I'm definitely going to be involved next year!

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

Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.

2 comments:

  1. Thanks for posting this, again so much I can relate to in your answers. It's nice to read about someone else working full time, I work full time but it is the biggest struggle of my life, however you have to get up don't you! But trying to have a work-life balance does seem impossible when you work full time with this illness, I used to work to live it now feels the other way around.

    Your Disneyland comment made me smile, I went to a theme park here in the UK last year it was before being diagnosed with fibro but I was diagnosed with ME, I went on all the rides and I thought I was going to die afterwards! I loved the rides and it really upsets me that I am now too scared to go on them for the pain I will suffer after!

    The lady on the red couch too struck a chord. I sometimes feel if I don't move around then people will at least realise I am ill, it's like if you try they just assume you must be ok then, I can't bring myself to lay down and never do anything though that would be stupid and giving up, I normally go home from work and lay down for an hour or so which I love, I look forward to the end of my work day to just lay quietly!

    Any way there's me wittering on again, thanks again for your great blog!

    ReplyDelete
  2. Thank you for reading, Kathryn! If you don't mind me asking, where are you from? I hope to hear from you soon!

    ReplyDelete