Part of my heart died with Robin. He’d been there my whole life… Always present. His amazing talent for honest drama and hilarious comedy… And everything in between. I thought he’d always be there. I hate suicide so much.

https://themighty.com/2017/06/love-letter-to-those-who-struggle-to-shower-with-chronic-illness/?utm_source=facebook&utm_medium=NP&utm_campaign=US_Pain_Foundation
It’s real. The only other time in my life that was exhausting to shower was pregnancy first trimester. I’d get out of the shower and have to lie down in my towel. Just needed a nap. It wouldn’t happen everyday. Just occasionally and in the first trimester. I never beat myself up about it. It had a beginning, middle and end.

This chronic crap leaves it all behind. Showers are exhausting. Draining. Necessary. I used to be able to get ready in about an hour. But now….I’m noticing it’s taking longer…longer. Preparing for the act of showering. Going through the motions. Drying off. Rest. Dress. Do makeup. Rest. Blow-dry hair. Style hair. Rest. Rest more. What am I supposed to be doing? Is there more on today’s agenda? *So tired*

After an hour rest, I’m usually good to go. 

Go out in the world with sunglasses and a smile. Smile. Act naturally.

I showered today. I rule!

https://www.buzzfeed.com/laraparker/i-wonder-who-i-would-be-if-i-didnt-have-chronic-pain?bffbhealth&utm_term=.hupM55KKEp#.sp33nnkkwP

What’s migraine like? It’s Sunday and I woke with a migraine.  I think the weather has triggered me: it’s rainy, it’s windy and allergies are bad.

I took my medicine. Ice, Cefaly, rest. Marc did cranial compression. The pain is less but the other symptoms suck: lethargy, dizziness, nausea.

Gotta eat. Gotta shower and get myself clear fresh and made up.

It’s like Groundhog Day, the Chronic Migraine edition.

Got myself ready. Almost 6pm and I’m in bed… On top of the covers… Hurting.

This is my friend’s post:

This is my friend. She’s a super great person and I’m glad I know her. 

I can’t “like” her post and I can’t comment either. Because she doesn’t understand. And when I was 34, I didn’t understand either. God bless her. Her dream is to be a fitness model and I’m very happy for her. And she may never have anything Chronic happen in her life. The words in her post shock and sadden me; I feel accused. I feel belittled. I feel singled-out and misunderstood. I don’t think she means to be offensive; she’s speaking her Truth. But her words feel cruel and unleash feelings in me and I feel compelled to analyze them. 

I found a picture when I was 30. And I was blissfully unaware.

I worked out every morning – cardio, weights. I have always (and will always) make healthy food decisions. I woke up feeling refreshed. I moved like lightening. I cared for my little people as a doting mama and I found great joy in it all. I knew I had found the answer FOR ME. But I never ever assumed that my answer would be the answer for EVERYONE. I wouldn’t know that, in less than a decade, things would be totally different. My once episodic migraines, would start slamming me more and more frequently. And I strongly suspected there was something else – why couldn’t I wake up refreshed anymore? What was happening? Why were morning workouts becoming impossible on some days? I was an RN accustomed to working the early day shift but suddenly I was unable to come alive until noon. Someone help me! Something is wrong! 

Already experiencing depression and anxiety, my head was demanding a front row seat in my very busy life. The thyroid was demanding too. 

And here I am at 45. Unrecognizably changed. 

I still eat healthy. But I fight every morning to get out of bed. I demand every morning that my body do gentle yoga and free weights. Over the last decade, well-meaning doctors have tried so many medications to help me and my head: the meds have never helped my ailments much, but have made me gain lots of weight, taken my hair out in fistfuls, made me lose sensation of my face and mouth, made my legs swell to enormous size and given me trouble breathing, killed my libido, elicited fits of blinding rage, made me suicidal, produced a cough that left me gasping for air daily.

And through it all, I fight. I fight to be a mother for my kids, a wife for my husband, a friend to my friends. I fight pain…endless and pointless pain. I wake up exhausted, collapse several times a day and go to bed early – hurting and utterly exhausted. I sleep and sleep and sleep. And wake up to start the cycle again.

I wish to God there was a JUST DO IT button I could press. One to make it all go back to my early thirties when I was well and energized.
My friend doesn’t understand, bless her, and I pray she never does. When your body betrays you… despite your workouts, despite your positive “go-get-em” and determined attitude, despite your healthy eating.
Today, I’m lying here in bed…can’t even consider rising yet and using my body to move properly…11:00 on a Sunday morning…my RA flares every extremity and their joints, my Sacroiliac is screaming (I’ve got heat on it), my head…my head stings at a 5 but I’m delaying medicated because I want to make my pills last. My pills are the only thing that can keep me moving like a Normal human being most days. But I’m lying here in pain and totally useless. I slept all night – only getting up to replace ice packs for my head and adjust my heating pad and support pillows – oh and go to the bathroom because migraine makes me diurese. I went to a college football game yesterday. Sat in the stands and watched. I cheered, held my breath for plays, got to my feet for victories, expressed disappointment with errors. 

My husband and I walked thru the stadium and a few blocks to catch a cab. We laughed last night, we held hands, we talked about our children, friends and extended families.

This lying in bed almost to Sunday afternoon now is not my choice. I’d much rather be up by 9, showered, make breakfast for all, get to church, get washloads going, organize the garage or my house, clean the floor, garden outside… But I’m trapped…trapped in a body that hurts like hell with every movement. Trapped in a head that’s fuzzy and HURTING. Hurting so much that it robs my life of energy and stamina. 

Mind over matter…. I tried that noise. Over and over. And my mind and body said: NOPE!

I may not be ill for the rest of my life. I may be able to regain my health. But my friend is so lacking in understanding: I don’t have diseases based on how I treat my body daily. That’s bullshit. I’ve always treated my body super healthy. When my health began to fail, I had to be reminded to stop pushing my body for success. To lower my standards of success. To STOP challenging myself unrealistically – because what I used to be able to do – was something I could no longer do. Not because I didn’t want it the same, not because of poor health choices I was making, not because of anything I could change…but because I was slowly imprisoned…in a body of betrayal. 

I lived ignoring the pain for years. I tried mind over matter; no pain, no gain. I was determined to shake it off. I would end up sicker, with more pain and symptoms. I would end up crippled – just praying for death that wouldn’t come. 

I was even smacked with a disastrous case of Shingles at 38 for all my pushing – I was treading water just as fast as I could, trying to keep my head above and trying to breathe.

Who was this that I had become – despite my healthy life choices, my drive and determination, my great Love, my Faith, my kind heart? What a Life Lesson this is! One I would spare anyone from ever experiencing.

We loved you the minute we knew you were there. We will never forget you, our Angel Baby. Losing you was the hardest thing that had ever happened to us. Our lives were forever changed. I used to question why it happened but I know it was to help and support the other 1 in 4’s & break the silence and shame.