Invisible Chronic Illness

28 Things about My Illness

1. The illness I live with is: Fibromyalgia and Peripheral Neuropathy

2. I was diagnosed with it in the year: May 2013

3. But I had symptoms since: Jan. 2011

4. The biggest adjustment I've had to make is: Knowing and respecting the limits of my body.  Understanding that the people in my life, even the ones that are close don't understand those limits

5. Most people assume: That mind of matter works with this disease.

6. The hardest part about mornings are: Getting my body out of bed.  I wake up feeling pummeled and stiff from head to toe.  My mind is very slow to boot up, the kids are immediately chirping requests and coffee doesn't put a dent in the fatigue.

7. My favorite medical TV show is: House, when it was on.  Now I feel like one of his cases

8. A gadget I couldn't live without is: My pedometer.  I just started using one about 6 wks ago to challenge myself to move every day, no excuses.

9. The hardest part about nights are: Winding down.  The pain and aching of the day sets in.  My skin feels tingly and itches, my joints start throbbing.

10. Each day I take __ pills & vitamins:  I take 4 different pills and vitamins a day

11. Regarding alternative treatments I:  I am open, but don't think they are the cure.  What is one man's medicine, can be anothers poison.

12. If I had to choose between an invisible illness or visible I would choose:  Most of the time I wish some part of it was 100% visible.  Not for the sympathy, but I could say 'I'm too tired' and people wouldn't question it.

13. Regarding working and career: I've been a stay at home mom for 5 yrs now.  Part of accepting my limitations flows into future career choice.  I love working in plant nurseries, but my body can't take the physical labor or exposure to the heat/cold anymore.  Trying to find something that still lets me use my passion for plants.

14. People would be surprised to know:  I still dream of doing a half marathon, even if I walk it.  Need to get my mental and physical courage up for it.

15. The hardest thing to accept about my new reality has been: Giving up my dreams and finding new ones.  Being ok with the new daily challenges.  Accepting the emotional roller coaster that this disease puts me through.

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

17. The commercials about my illness:  Don't even come close to describing the symptoms and challenges adequately

18. Something I really miss doing since I was diagnosed is:  Having limitless energy to play with my kids


19. It was really hard to have to give up:  Playing tennis in different competitive leagues.  I get tired too quickly to last through a match.  

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

21. If I could have one day of feeling normal again I would:  Take a all day hike into the mountains with my husband.

22. My illness has taught me: To be patient with myself and swallow a lot of pride.

23. Want to know a secret? One thing people say that gets under my skin is: The most stinging comment I've gotten is ''I know people that have gone through worse, they were so strong and never cried."  Thanks for marginalizing my journey.

24. But I love it when people: Understand that I am saying 'no' but I REALLY want to say yes.

25. My favorite motto, scripture, quote that gets me through tough times is:  ''You can't live your life for other people. You've got to do what's right for you, even if it means hurting people you love.''

26. When someone is diagnosed I’d like to tell them:  This is a long journey.  It will bring you to the heights of mountains and to your knees.  You will lose friends that will never understand and gain ones that become pillars of strength.  You will laugh, cry, smile, scream, love, rage and have a whole host of other emotions.  All of this is normal.  

27. Something that has surprised me about living with an illness is: How strong I can be when I need to.

28. The nicest thing someone did for me when I wasn't feeling well was:  Took my kids for a couple days so my husband and I could process everything.  Its hard to process emotions when little ones are around.

Ahhhhh, Facebook how I love and dislike you.

This week I posted that an EEG was scheduled for Friday.  The neuro wants to test the neural pathways to see how fluidly my thoughts and commands are flowing across my brain.  The damage could be blocking or slowing communications down.  Imagine a signal have to go around instead of directly through.

I was actually excited about this.  How fun to look at brain waves.  So, I posted on Facebook about my medical inquisitiveness and anticipation of the appointment.

So a person we shall call 'L' calls my mom, because she saw the post.  All concerned that ''everyone'' might find out and didn't I say a year ago I didn't want anyone to know?

This is the deal and realization I've come to.

When dealing with BIG life issues, now is the time to talk.  Talk about it, tell the world about it and maybe you will help someone else.  After the big crack up of 2011, I realized how important that is.  People need to stop painting their lives like a Monet.

And now you think I've gone off my rocker.

Monet was all about giving an impression of place or feeling, hiding and smoothing over harsh corners so you see everything through a haze.  People put up their own filter to the outside world, never wanting to admit weakness or need.

Well, I got tired of it.  Keeping up this little screen.  Life overwhelmed me almost three years ago because I didn't think I had anyone to talk to.  Everyone else was 'ooooooo-ing' an 'ahhhhh-ing' over life and not admitting to the rough patches.  It caused me anxiety to think about not being a good enough mom, or wife, or daughter.

And lesson learned, you drop that veil and show people you are in pain.  They either run to the hills or stand firm beside you.  It's a reality check to see who your friends are versus the aquaintences.  Moving 2400 miles away from your friends also does the same thing.  Those that truly love you will still call, text and email.  I digress.

I assured mom that through much therapy and retrospect I'm in a good place.  I don't care anymore what people think about how I process the happiness, stress, joy, anger, laughter, and anxiety that comes into my life.  

The ones that count know the truth.  The ones that count will understand that I can't make life decisions anymore based on their happiness or comfort zone.  There is a polarizing effect to this kind of thinking among family and friends, it means new rules.

So I came to the conclusion that I needed to share my journey so maybe one other person wouldn't feel alone or abandoned in a dark moment.  I have an auto-immune disease and it forced me to create a different outlook on life.  I had to go through a lot of emotional pain to grasp life again.  And I'm not willing to cover that pain back up because that only causes more pain. 

The human brain doesn't like a game changer and I've thrown a wrench into lives of all my friends and family.  And I'm not asking them to fix me, there is no fixing this.

***(Others ideas to 'fix' me is a whole different post)

What It Feels Like

Going to preface this with....Not looking for sympathy here, not down about life, just trying to put into words how my world has changed.

Two and a half years ago, I was in a terrible mental state after months of not sleeping, anxiety and a depression that hit so hard I could not function.  I do not hide this, my journey thru that darkness is here on the blog.  All that therapy time with Anne brought my passions and life back into focus.  I could see the future clearly and what I wanted.

That battle was fought and won, then the carpet was pulled out again.  Emotionally, that is how I feel.  

Months of doctors throwing all these complicated diagnosis' and treatment protocol at me.  Me trying to absorb all the information and assimilate how it affects my life as a mom and wife.  I had JUST gotten my life back, my husband had just told a friend ''he'd hadn't seen me this happy in years.''

So I lost my marbles again, because my weakened brain couldn't handle the anxiety and stress.

Most mothers will agree, we envision moments with our children in the future.  The day Nora marries is a hazy picture already forming in my brain.  What she will look like, what I will say, the tears of happiness we will cry.  I can see Trent chatting it up with his father on the back porch like two good friends.  My love for these two is held tightly at the center of my soul.

As a mom you want to do EVERYTHING with your kids. Go, go, go!  Daily adventures to stores, playgrounds, museums, art groups, music, ballet, the beach, etc.

Inside of four months last summer, all of that was changed.  So how do you adjust as a mom?

Well, first you get ticked off!  How do you accept limitations on your life because your body is attacking itself?  Most people get pissed, I know I did.

You slow down, take a step back.  Then you go talk to Anne again.

When I talked to Anne this past fall, our focus was on redefining my roll as mom and what that meant with a chronic illness.  My expectations are and were very high, we had to reset that bar.  First she had to help me process all the changes that were being asked of me....I entered a very recognizable cycle of grief.

Denial.  ''I'm fine.  They have meds for things like this.''

Anger.  Pissed. pissed. pissed.  Don't tell me I CAN'T, I will!  How dare this happen! Let's just say, God and a lot of people came under fire.

Bargaining.  Played a lot of 'IF this...then that'' statements with myself.  If this can just be something that doesn't confine me to a wheelchair, I'll be good with that.  God, you hear me....anything where I still walk, and talk, and paint, and sew, and think, and, and, and....oh, I can't have all of that.

Depression:  Enough said.

Acceptance:  So life is going to look different.  What's the plan?

With every new symptom comes challenge, how does that change my day, how do I work around that or compensate.  What I learned from Anne, with a chronic condition you will go thru the grief cycle over and over and over again as the disease progresses.  There will people that readily accept your illness, those that deny it because they themselves are scared.  Let them be scared, you keep marching forward until they find you again.

Don't every let go of family and friends, you will need them.

The bad days can be, well, bad.  Joints feeling like they will explode, muscle spasms that feel like 9-volt batteries zapping me, stumbling over simple vocabulary and ideas, fatigue and dizzy spells.  My basic BAD day.

On these days, I had to learn to do the minimum so I could do the maximum with the kids.  This might not make sense to some of you.  What is the activity that makes me use the minimum amount of energy or muscle that still gives them the best of me?   I don't like telling my kids, ''mommy can't''.  This disease will not be my excuse.

Bad days. Lay in the yard and blow bubbles. Snuggle the kids in for a book.  Pull something from the freezer for dinner.  Have Nora paint my toes.   Play 'patient' with the kids.  Be a bumpy road for Trent's cars.  Read a book for myself.  Skip a play date.

Good days.  Most days are good days.  Feel the sun on my face. Park with the kids. Go to the YMCA. Make a culinary mess of the kitchen. Fly kiddos on my feet. Play monster. Cover the patio with chalk drawings. Put the kids to bed.

Both days end snuggled up to the hubby, both days are good days sung to a different tune.