Invisible Illness

I’m currently working on my book “Predictably Unpredictable”- a book all about my lyme journey and then some.

I’m searching for anyone who would want to share their story/testimony/transcript- whatever you’d like to call it, so I can include others stories in my book. [I am not using names in this book- as I respect doctors and patients privacy, so you will be given a name for my book]

If you’re interested, I would LOVE to hear from you. Tell me your story, so I can tell the world. #stopthesilence #ChronicLymeDisease #Babesiosis #LymeWarrior #Bartonella #InvisibleIllness

Today I’m feeling quite awful. My brain feels in the clouds, anxiety level ridiculous, left side weakness. My extremities don’t want to do what I tell them to do. There’s a misfire between my brain and my body. I’m just under 2 months of being ill for 5 years. 5 years. Our youngest daughter just turned 5. She doesn’t even know who I am. The real me. The not sick me. The fun me. The active me.

I’m feeling so down, hopeless, sad, guilty. A burden.

I’ve been able to stay somewhat positive- as much as one can with this disease- but 5 years? That’s a big chunk of time. Our oldest son has 5 years of the real me. Our middle child had 3 and our youngest had zero.

It’s wild to me how an illness can- for me- in a matter for just 3 days take over your entire life. Your whole being. Your soul.

I’m exhausted. I’m so sick of being sick. #ChronicLymeDisease #Babesiosis #Bartonella #LymeDisease #InvisibleIllness #LymeWarrior

Yes, I wear lipstick. Yes, Eminem was playing from my car. Yes, I am 44 years old. Yes, I had to get groceries before the winter storm arrived. Yes, I have handicapped plates. Yes, the car belongs to me as do the plates. (❗️AND❗️) Yes, I see your dirty looks, glaring, shaking of heads, whispering and ignorant assumptions of what a handicapped person looks like. I owe you no explanation of my disability. You are not entitled to my health history. The audacity of people to verbalize comments 'that's a handicapped parking spot,' 'stop using your grandma car,' 'I'm going to report you.'
Listen assholes, I have more metal in my body than an aluminum can recycling center. I have Avascular Necrosis (AVN) or Osteonecrosis. I have rods, pins, plates, screws etc holding this body together. My hips went first. Bilateral hip replacements. Second, my left shoulder. Shoulder replaced. Third, knees. Bilateral knee replacements. Fourth, left ankle. Same story, same dance.
Like most, some days are better than others. Sometimes I need a cane, sometimes I don't. Sometimes I can get in/out of my car with minimal difficulty. Other times it takes me 10 minutes to align my hips, legs and feet to the ground.
Basically FK YOU and your dirty looks. #AvascularNecrosis #Osteonecrosis #ChronicIllness #ChronicPain #InvisibleDisability #InvisibleIllness #Disability #ButYouDontLookSick #Youdont knowme

that if you're out here feeling as though you haven't had a "big year" this year, thats okay.

While social media becomes flooded with posts from our pals this week about how massive 2022 has been for them, it can be easy to feel a little deflated watching the endless highlights reel of handsome triumphs and successes.

For some of us, fatigue stood in the way of our goals, pain stole some of our best laid plans, perhaps we had to make sacrifices, perhaps our lives were picked up and thrown in ways we did not see coming. All of these things are okay.

Let's reframe for a second and consider all of the things we did achieve.

Getting up each day.

Still being here.

Fighting for an answer.

Not giving up.

Eating a meal. Or two, or three.

Advocating for ourselves.

Advocating for others.

Reaching out to someone.

ASKING FOR HELP.

Helping someone else.

Being an incredible friend, colleague, parent, relative.

Loving ourselves.

Forgiving ourselves.

Looking ourselves in the eye and-

Still getting up - every, single, day.

May our strength to hold on and our love for each other continue to be bigger than the waves that try to break us.

If you're reading this, thank you for being here. It's been a big ol' year. x

#MentalHealth #ChronicIllness #InvisibleIllness #2022