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.

Would you like a slice of Reality with your wine?

If there is one thing I can say without a doubt about myself, it’s that I tend to do things backwards or just completely out of order: willy-nilly, if you will. My willy-nilly nature made going through the five stages of grief interesting to say the least. Before my diagnosis, I spent much time being angry, then in denial about the condition my body was in. Those were my two favorite steps, and the ones I subsequently spent (spend) the most time on. Some days I’d pretend I was sixteen again and I could physically do as I pleased. I even went to a dance class with Jeremy’s younger sister, Victoria, just to show that “I still had it.” I don’t know who I was trying to prove “it” to. Myself, I suppose. However, I quickly learned that “it” was long gone and running as fast as Usain Bolt in the 100 meter dash, never ever to return.

We started with stretching. This I could do, mostly. We pointed and flexed our feet in a straddle.

What the hell…my feet are sickling. STOP THAT. Turn out, turn out!!!

(For the non-dancers, sickling means turning your foot in, instead of out. Bad ju-ju.)

Then we began the floor combinations. The nice 30-something year old teacher with her mid-drift showing (post-baby and looking darn good) quickly ran through the combination. I stood at the back of the line to give myself more opportunity to learn it. (My brain isn't that fast these days.) She added floor work to the beginning of the combo…I’ve always hated floor work. By the time it came to be my turn I decided to just go after it.

Fail.

            “Hold your center! Don’t fall out of your turn! UP UP! You’re behind! Chasse, Tor Jete, Soutenu, Plie!” the too skinny teacher shouted as I made my way across the floor with the grace of a walrus on dry land.

All of the little teeny-boppers were watching, smirking. I was mortified. Not only could I not complete a simple Pique turn without sickling my damned foot, I couldn’t get my fat arse off the ground fast enough to stay with the music. I stood at the back of the line once more, holding back my tears as Victoria gave me an encouraging look.

           

          “Don’t worry. I’m out of shape too. I can’t do near as much stuff since I tore my hamstring," she whispered with an encouraging smile.

That didn’t help. But she tried.

“It’s just so frustrating! I used to be able to do all of this, easy. And now I can’t even point my toe correctly!”

            

          Giggling, she said, “It’s ok. Neither can half of these dumb girls either. Just have fun!"

Once again, she tried, but it didn’t help. How was I supposed to have fun when I was failing so miserably at one of the things I used to be so confident in? This was one of the biggest ego-destroyers I had ever encountered.

  

It’s kind of funny how Denial has its way of hiding its big, scary-self when Reality comes to give you a swift round-house kick to the face. Right about the time my face met with the bottom of Reality’s shoe, I decided to add “Dancing” to my list of “Things I used to be able to do, but I can’t do anymore because of this stupid Fibromyalgia crap.” Ok, so maybe that isn’t the exact name of the list, but you get the idea.

There are several things on that list that I cannot do, at all, or at least without some assistance. The list includes but is not limited to: lifting heavy objects, vacuuming the stairs, scrubbing the bath tub, giving the dog a bath, dancing, standing on hardwood/concrete floors for long periods of time without proper shoe support, sitting up-right for long periods of time, lying down for long periods of time (unless a muscle relaxer or two is involved), crossing my legs, sitting “Indian-Style”, holding a blow-dryer….the list really could go on and on.

You might be asking yourself at this point, “Well what on earth can she do?” It took me an extended amount of time to figure that out for myself. I spent a good portion of my time hanging out in the Step 4 Lounge after I received my diagnosis. It’s actually been one of my favorite places to frequent on and off for the last fifteen to twenty years. Needless to say, Depression and I go way back. If we were to have a relationship status on Facebook, it would be “It’s Complicated”. If we were to have a song, it would probably be “I Miss You” by Blink 182. Just call us “Catherine and Heathcliff.”

I think I’ve made my point.

In the past, we would tango every once in a while about things from my childhood, some tango’s lasting longer than others. Ever since I had met Jeremy though, my "dances" with Depression were getting shorter in duration with longer periods of time in between. After Reality hit me though, I basically tried to adopt Big-D as my BFF. It took several friends’ encouragement and a TON of research for me to finally ease my way out of the Step 4 Lounge and start inching towards Step 5 Adventure-land FunPark.

But wait, I skipped Step 3! Yes, actually I did skip Step 3. Completely. Unfortunately (or fortunately?) with my existing knowledge of Fibro with my mom, I didn’t bother with the "if only's"; which is odd considering I was inducted into the Dweller’s Hall of Fame at the early age of six. However, I knew in this case, there wouldn’t be much use in dwelling. If only (haha) I had taken that approach from a holistic perspective, I probably could have skipped straight to the Step 5 FunPark!

Ah….Step 5 Adventure-land FunPark. Arguably one of the best places I have ever been in my life. It most definitely beats any park I ever visited as a child. The entire place is tailored completely for ME (says the only-child, with excitement)!!!!! As soon as I arrive, a good looking man that strikingly resembles Chris Hemsworth hands me a pair of glasses that conveniently flatter my features. When I put the glasses on, everything turns bright! There are rainbows and happy people all around who understand everything about Fibromyalgia. There are no stair cases to climb or uncomfortable chairs to sit in. Everything I touch becomes as light as a feather. All sodas are sweetened with Splenda, and fresh fruits and vegetables are available at every corner. If I start getting fatigued, a big fluffy bed appears out of nowhere to sweep me off my feet into a comfy, deep sleep. The best part about this place, though, is the attire. Only soft sweat pants and t-shirts with fuzzy socks and memory foam slippers are allowed to be worn. It IS the perfect pla….you aren’t seriously buying this crap are you?

Alright, let’s get real, shall we? Acceptance isn’t this perfect little place where suddenly everything becomes OK again. In fact, that place doesn’t exist and it never will. But, with the right tools and state of mind, you can get really close. And that’s what I’ve been doing.

Yes, I have finally accepted and determined that I have Fibromyalgia and I will continue living.

All together now, “I have Fibromyalgia, and I WILL continue living.”

Good.