When I worked for Ford we had a training in which they showed us a video made by “Chick-fil-a” talking about how everyone has a story you don’t know anything about (posted below). I was reminded of this video earlier when someone on my facebook feed posted about women leaving the house with their hair not looking brushed. Honestly, my first instinct was to be mad and get defensive, I even cried a little bit. Since becoming ill I can no longer care for my self or fix my hair like I used to. Being 100 % honest my hair is only washed once a week and then only combed through if I redo my ponytail/bun that day. My arms hurt, scalp hurts, water hitting me in the shower feels like needles sometimes. Growing up in the South where “Cleanliness is next to Godliness” comments about lack of hygiene seem to cut a little deeper. Now that I’m sick I feel the need to speak up for others like me that may be struggling with an invisible illness. I know I can’t change how society thinks as a whole but I can hopefully make a difference to some……
But……….. in saying this I realized I need to have an attitude adjustment myself. Everyone does have a story and I often times forget that.
Instead of just moaning and groaning about how bad the smoke has been ( but seriously it’s bad, yesterday’s news talked about how the air quality is equivalent to smoking 7 cigarettes ), I could spend more time praying about the ones who’ve lost their lives and homes to these fires. I thought about this in length last night, so many fires. So Many. Why aren’t we talking more about this in the news? Instead of getting upset and crying to myself, I could hope that peoples eyes are opened to how tiny little comments said on Facebook can affect someone. Instead of griping about how Netflix’s new show “Afflicted” harms the Chronic illness community I can speak up about my own story (to the appropriate channels) and be an advocate for those whose illnesses have progressed much further than mine and can no longer speak or write themselves. I often feel helpless and that I don’t contribute much to society but I know that just the depression talking, I can’t do much physically or monetarily to help I have a lot of time on my hands in which I can pray.
My attitude adjustment won’t happen overnight just like watching this video won’t change everyone’s way of thinking but maybe even if it just for today it can help make a difference to someone.
I’m writing this in bed with the AC running even though it’s 75 outside. Its been a few days since I’ve showered, the laundry is in various piles on the floor and dishes piled high in the sink. My pantry shelf just gave in spilling all of our canned goods in the kitchen floor but am in too much pain to pick them up, scared that if I get in the floor I’ll have to stay there until Steven gets home. Sonic hasn’t been to the dog park in a few days because I’m too dizzy to drive. My increasingly swollen lymph nodes hint that my EBV has reactivated and intensifying symptoms have made it clear that I’ve crashed.I’ve been able to sit quietly and think and reflect on the past week or so. I am so so thankful I got to go and have a “normal” vacation. I completely wore my body out and pushed it to the limits though. I knew the crash was coming. Dr. S warned me and we took some precautions, even double up on antiviral supplements, but this seems to be what my life will be like now….. A roller coaster of ups and downs.ME/CFS is commonly known for the presence of Post Exertional Malaise, fibromyalgia patients have various terms for it including the push-crash cycle, flares and more. Basically, you are in this never-ending cycle of feeling good, overdoing it and crashing. PEM causes extreme exhaustion and can bring about symptoms that are more intense than “normal” leaving some bedridden for days. The activity level ranges from person to person, for some it could cause problems after an intense workout, others a big trip, or even the smallest of things like a walk to the mailbox, or a shower.The interesting thing for me is that I would do it again in a heartbeat. The past year I didn’t do much for fear of the crash, too long at the dog park would take me out so getting on a plane would for sure cause serious damage. While I feel like the roadkill squirrel my dad pretended to cook, seeing my family was worth it! Watching my little brother marry the love of his life and getting to reconnect with my sister brought me so much Joy!!
I even felt like a normal person for a few days because I took the time to prepare and make necessary adjustments! Here are some things that made my trip easier!Use a mobility aid and/or request assistance at the airport. My walker was a great asset to have when needing to sit down in the long security lines. It’s easy to request assistance at the airport or when you book your flights, the service is free, you just have to ask.Pack essentials in your carry on, or in a bag that’s easy to access. Because of my heat intolerance, I made sure I had cooling products in my carry on and easy to reach when we were on our long road trips. After using them so much on the trip these products have a new permanent home in my purse. Chilly Towel- these are great! just wet it and go! Personal Fan– This saved me on a hot crowded flight, it was so bad I had to ask for a makeshift ice pack. I placed the fan on top of the ice to make it cooler, like a tiny A/C unit in my middle seat! Young Living Lavaderm Cooling Mist This stuff works wonders, I mainly used it at night to help with hot flashes but it proved useful in 107 degree heat!
For more information be sure to check out the Essential Oils tab above! My Oil Hub is the best place to find information and get started.What are some of your go-to tips for avoiding the crash or flares with traveling or big occasions?
I’ve always wanted to be a mom. A stay at home mom actually, it was quite a foreign concept to me growing up. No one in my family was a “homemaker” and the majority of the extended members were divorced and working so the idea of a stay at home mom was fascinating to me.
The hunger grew while I was at Hillsong. I was forced to go to Sisterhood and be around girly things and talk about families, children and everything it is to be a woman of God. I secretly loved it though if you knew me then you would be surprised. It was hard, while in Sydney I had two procedures on my female parts and faced some of the same thoughts and fears as I’m facing now…
As the years went by and I got older I heard the biological clock tick louder. I celebrated with friends through weddings, engagements and birth their babies. Somewhere along the way I let my guard down and actually believed I would know this joy one day too. A few years ago I actually had a dr tell me the cysts in my ovaries were gone, that really allowed me to dream even bigger.
I keep singing I dreamed a dream from Les Miserables. I was trying to explain to my mom that my tears weren’t all about not having children of my own. They are about not even getting to dream about them, their freckles, their births, surprise gender announcements, and fun ways to tell friends and family the happiest news ever.
I’ve been through life, heartache and loss….
I’ve just never had my dreams taken away before.
“I had a dream my life would be So different from this life I’m living So different now from what it seemed Now life has killed the dream I dreamed”