Posted in Fibromyalgia

30 things

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Fibromyalgia

2. I was diagnosed with it in the year: 2004

3. But I had symptoms since: I was 12 years old.

4. The biggest adjustment I’ve had to make is: simply admtting that I can no longer do it all nor do anything how I used to; asking for help.

5. Most people assume: that I am perfectly healthy and capable.

6. The hardest part about mornings are: my neck, feet, and hips.  The stiffness and burning is awful – so bad that I sometimes cannot walk correctly.  Also simply waking up is often a challenge.

7. My favorite medical TV show is: I could live without them all.

8. A gadget I couldn’t live without is: I have about 5 different back massagers in this house and I am still in pain.  I can clearly live without any gadget except my coffee maker and my smart phone.

9. The hardest part about nights are: trying to finish all the things I couldn’t get done that day due to pain or exhaustion, and looking at what I have to accomplish the next day.  The physical buzzing of my nerves that I can feel from head to toe – the culmination of all the input throughought my day.

10. Each day I take 4 pills, down from 9.

11. Regarding alternative treatments I: would try more if I could afford them. Massage helps so much but is very, very painful.  Also myofascial release is very help yet very painful.

12. If I had to choose between an invisible illness or visible I would choose: a visible one, but I’m sure I’m very ignorant on what it’s like to walk into a room and everyone to know your body is sick.

13. Regarding working and career: Impossible.  Or maybe damn near impossible.  And I so love my career.  I hope I can find a way – is there a way?

14. People would be surprised to know: that I often get lost in very familiar places (my smart phone gps is my savior).  I also tend to not remember the events of an entire day or year, and, most embarassingly,  I sometimes do not remember people’s names or faces, or ever meeting them at all, even if we have met several times (it is not personal).  I often do not know how old I am, what month or year it is, or where I parked my car (I’m not dumb).  I used to practically live in the emergency room because of escrutiaing pain and constant infections (I’m not crazy).  I often temporarily lose my hearing, am frequently unable to turn doorknobs and therefore open doors, experience tingling or numbness over vast parts of my body, sometimes pass out, my balance comes and goes, and there are multiple places on my body that, if touched with only your index finger, would bring me to my knees.  My body is usually silently burning with pain and my muscles are completely stiff.  My medications have some pretty serious side effects, but I do not take any narcotics at all because I am allergic to them (I’m not a med-seeker).  And… that I can have days where I have nearly no symptoms at all and feel almost normal because that is how fibro is (I’m not a faker).  And that I’ve been dealing with all of this since I was 12.

15. The hardest thing to accept about my new reality has been: filing for disability – the act of actually filing, the title of “disabled”, and the fact that everything needs to change.  The fact that I must very carefully choose what I put my energy into, since it is so scarce.  I need to save most of it for my son and myself, so there isn’t much left for, well, anything.  Saying goodbye to my career.  Reevaluating my worth.

16. Something I never thought I could do with my illness that I did was: Ha!  Everything!  I’ve done it all – with consequence, of course.  Now let’s see if I can live a simple, calm, and effective life – with help – that makes the most of what I have to offer rather than constantly fighting against it and supplements and assists me where I need it, making an even more amazing life for me and my son.  I think I’m on my way!

17. The commercials about my illness: dont really get the point across.  They miss how debilitating it is.

18. Something I really miss doing since I was diagnosed is: I have no clue – I’ve been like this since I was 12.  My new back issues have caused me to stop doing nearly everything, but with fibro I had finally learned to let go of the stuff I didn’t want in order to make energry available for little bursts of the things I love.  If anything, I simply mourn the death of my dream.  I want to be that person who wakes up refreshed at 6am and makes crepes for her kid before school and cleans the entire house effortlessly.  I really wanted to be her!

19. It was really hard to have to give up: my career.  I was horribly depressed because of it.  Also, continuing a task until it is done or doing things perfectly, and drawing and writing by hand.  Mostly my career, though I do believe everything happens for a reason.

20. A new hobby I have taken up since my diagnosis is: creating digital art on my smartphone that illustrates my fibromyalgia pain.

21. If I could have one day of feeling normal again I would: scoop up my son and run and run and run and roll and let him climb all over my body with his knees and elbows.

22. My illness has taught me: to lean, to ask for help, to bend and not break, patience for myself, how to put myself first so that I can better serve the ones I love the most – my son!

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I hurt, too!” Or people who tell me that I just need to get out more.  Or “Have you tried this supplement?”  Or when they see a friend kindly giving me a massage and they jump up and say “Me next!” like it’s fun.  It’s not.  It hurts, and I need the help.  But the number one thing that pisses me off are doctors/people/websites/blogs saying all you need is exercise and a positive attitude.  IF EXERCISE AND POSITIVE THINKING CURED FIBROMYALGIA, THERE WOULD BE NO FIBROMYALGIA!!

24. But I love it when people: tell me that they read my blog post or saw my pain art drawings or fibro photography and it made them think.  When they tell me that they never knew how much pain I was in and begin to ask me questions or tell me what they learned about fibro!  And I love when people send me “gentle hugs” via the internet.  25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don’t have one.  I just refocus on caring for myself, remind myself to be kinder to myself, and reflect on whether or not there is a lesson I am supposed to be learning.  Simply knowing I have good family and friends who love to help me and that it is ok for me to help myself is really all I need.  I tell myself that I’m not like everyone else, so I can’t do what everyone else does. I also remind myself that fibro is a cycle, and if I’m in a lot ofpain right now that means I will be feeling pretty good in the near future.

26. When someone is diagnosed I’d like to tell them: to become their own best advocate.  Get educated, get support, do not do it on your own, do not close yourself off, do not feelbad for making the necessary changes and accommodations.  Change doctors a million times until you find one who listens.  Ask for help often and find other ways to give back to replenish your soul.  Find your worth and remind yourself of it often.  Don’t worry about what others think of you. Learn to say “no”.

27. Something that has surprised me about living with an illness is: truly how much it has taught me about life and myself.  Fibro actually makes me even better at my job working with children who have autism – I understand their sensory issues more than most people and tend to pick up on things others don’t because my nerves are so oversensitive.  It has made me more aware of and sensitive to other people’s pain, and it has taught me humility and patience for myself.

28. The nicest thing someone did for me when I wasn’t feeling well was: wash my mountain of disgusting dishes.  I told her no, that it was gross and I didn’t want her to do them.  She told me that she was doing them, end of story, and that she wanted to help me.  I cried.  I will never forget that day.  She opened the door for me to learn to ask for and accept help.  I have another friend who helps me shop and haul things out of the house for me.  I cry every time!

29. I’m involved with Invisible Illness Week because: I want to spread awareness.

30. The fact that you read this list makes me feel: wonderful.  Thank you for reading!

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Author:

Singer/songwriter and blogger/writer from Milwaukee, WI. Advocate for Fibromyalgia/Chronic Pain/Invisible Illness Awareness and Pure Ridiculousness. Possibly poops glitter. Definitely snorts when laughing. Has kept a child alive for 9 years and a house plant alive for 9 days. #chronicallyawesome

7 thoughts on “30 things

  1. Thank you for sharing all of these pieces of your story, and I’m really touched by all of it, as I’m learning to process/grieve my own limitations, so hearing how other people are learning along the same journey seems to help a bit. Also, I’m an artist, so I appreciate seeing your fibro art–sometimes seeing a picture captures something that words just can’t get to.

    1. I miss you too!

      Fibro, MS, Lupus, and Lyme all have those similar characteristics. BUT, all but fibro have actual tests that can prove you have those things. For MS your mri may show brain deterioration or you will be able to prove the coating of your nerves is being eaten away. That doesn’t happen with fibro. The only thing I could *possibly* have is maybe Lyme disease, but even then if I read about it the symptoms are just not what I’m experiencing.

      I loves you!

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