What's your bag? Day 4

Since I'm at home all the time, my bag/purse is the space in & around my purse on my bed. I'm not specifically bed-bound, but since having anything-like the arms of chairs-touch me causes pain, the most comfortable place is in bed sitting up. That way I have a stack on pillows behind me if I do need really soft support & pillows under my knees for when I am sleeping-& they double as a make-shift tabletop, iPad holder, place setting, etc. I am addicted to lip balm, such as Burt's Bees, the Merry Hempsters, or just good old Chap Stick. A friend of mine sent me my newest obsession a year or so ago, & it now serves as my all purpose balm. It's called Smith's Rosebud Salve-it comes in an adorable tin & I use it countless times daily as hand lotion, lip balm, as a skin softening agent, the uses go on. People with fibromyalgia often have a broken pain center...for example my brain can take a fan blowing on me as a painful stimulus-or a smell like cleaning solution as an assault. This Rosebud stuff has a very slight floral fragrance but so light it doesn't set off the pain alarm in my head. Any kind of extrasensory influence can easily transform as pain, & so certain things just make life easier. At the top of my list is noise canceling earbuds/phones. When I'm in a waiting room everything hurts, so having my iPod & earphones are crucial. Even just here our backyard touches 4 other yards, so lawn mowers, weed eaters (the devil's handiwork that is!), & other lawn care things drive me nuts, so often if it gets to a certain point I put the earbuds in & tune out anything but the music to refocus. In my bag medicine goes without saying, & I keep a nasal/allergy/sinus spray since those systems work overtime fairly often. Hair clips & ponytail holders are a must, as well as tissues & a mirror. I don't wear makeup (sadly) anymore, but I tend to always need a mirror for bunny fur in my eyes. Chai bunny's mark is never far away :)

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To be a real girl

Day 3 of the National Health Blog Post Month (NHBPM) is the topic 'I don't know about this, but I'd like to', & today for me that is without a doubt How to be/act/respond like a real, normal, functioning person. A little while back, mom & dad had over a family friend, & of course I told them I would come over the 20 steps through the back yard & spend some time with them. After the fact I came back to my little house wanting to crawl under my pile of clean clothes & never come out. I was deeply embarrassed, & it stung badly. The friend in no way probably meant this at all of course. Here's the humiliating details with names & dates changed for those involved. Well, all but me. O. o 

After staying up all night per my usual painsomnia, I had just gotten to sleep when my alarm went off. I got up, took my morphine which would mean a gap in my normal routine later but that's the cost of doing business in my world. Walking through the back door I saw the friend's face change. Eyebrows raised, shock registering before they could help themselves, & as I went to hug them it was if their body forgot how to hug. Acting as if I hadn't just hugged a marble statue i tried to smile & sat down. The poor friend then blurted out a comment/observation about my appearance, & let me just say it came out the exact opposite of the intended tone. Answering the question, it hit them how it sounded, & as dad started to laugh (as he & I had discussed this just a day or two before) & I was really glad to have an excuse to change the subject. It was truly about as low on the humility scale as i'd ever experienced, & i could feel tears coming, but I managed to hang on to my last bit of dignity & not cry. I also didn't want to make them feel uncomfortable-so i just sat down at the me-painful table. Physically sitting in normal chairs kills me, but I didn't want to make the situation more awkward, so I said nothing & sat as we had a small bite to eat. Getting more & more uncomfortable, I squirmed around like a child. The friend had been going through some tough times, & I had seen something that reminded me of their family & I had made a note to tell them-as I tried to get the words out the lack of sleep, pain becoming more painful, & fibro-fog clouding my brain left a fragment of a sentence hanging out of my mouth. I couldn't make any ordered words continue as they stared at me-totally lost I just stopped talking & thankfully mom's plentiful storytelling continued as I stuck food in my mouth to replace my garbled words. Ugh. A few more just odd/half insult sounding things were said, again-they didn't mean them but regardless-my body couldn't take anymore & my heart was already sagging under my dejected weight, so I released everyone & left, smiling as I said my fake high spirited goodbyes. Sinking into bed Chai bunny got up with me & positioned herself under my hand, waiting to be loved.

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Day 2-Quote-Frida Kahlo

'I am not sick. I am broken. But I am happy to be alive as long as I can paint.' This quote by Frida Kahlo may not seem like the traditional inspirational quote, but for me the raw honesty mixed with hope is the best. When I hear the word sick it conveys the possibility of getting well, which not to be negative, but I see getting well as a 1% chance of happening. I am broken. I do a ton of things daily in the hope of it helping my symptoms or overall health & will continue to do so, but I know deep down that there will be a cure for cancer long before fibromyalgia. I love creating through paints, writing, drawing, etc. With my iPad I've gotten back into painting, & just the freedom of turning a watercolor blob into a flower thrills me. Taking pictures (even the saddest, bleakest ones) of myself living this life is as good as months of therapy. Kahlo's deeply personal paintings of her pain inspire me to no end. I'm so very broken, but having ways to be creative continue to help me cope, & are as close to healing as I'm going to get, & for that I'm profoundly grateful.

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Day 1-why I write/social media

Welcome to day one of the National Health Blog Post Month! NHBPM from WEGO Health will have bloggers posting 30 for 30-a blog a day for November, using prompts to guide them. Today the choices are: why I write about my health, or what I like about social media/the Internet/online health communities. I actually am going to combine these today-as my yesterday/Halloween is a perfect fit.

My pain tends to be worse at night, so my day usually is late afternoon through early morning. I sleep when most people are working & am up all night. I started blogging-usually after midnight...after seeing how a soldier with PTSD was told that blogging & talking about his life could help. The show was the PBS show Sherlock, the soldier Dr. Watson. It seemed to help him & so I started doing a picture a day/blog. I use photography as a coping mechanism, & so doing a picture a day blog seemed like a good fit. Example? Tuesday night. Mom & dad had gone to see my 2 nephews & babysat while my brother & his wife were out. It really depressed me that I was stuck at home, not going to a great costume party, or seeing my adorable nephews, & not out buying candy & decorating my front door for kids. It was a normal night inside, as usual. Mom brought home 2 cute sugar cookies, & determined to not be sad I started taking pictures & created a happy Halloween picture card to send to my family. After finishing that, I started painting using the ArtRage app on my iPad. Being able to pull up all sorts of various paints/drawing pencils/art supply apps (without the mess or expense) has become a lifesaver to so many disabled people, whether they are physically or emotional handicapped. After sketching out the flower I started painting it using watercolors-this specific app has a feature where you can bring up a photograph to refer to & actually pull colors from it to paint with. It is as close to painting as you can get, & there's no way a certain fuzzy bunny can jump up in bed & mess up wet paint.

Around 2 AM I needed a break so I turned to AMC's Fearfest Halloween marathon & as you can see the screams of the actors had her ears raised most of the night. I watch a lot of tv & Netflix streaming movies, & it so helps me refocus my mind off of the pain. During a commercial I went & took a picture of the gorgeous full moon. The yard was bright with reflected light, & I just stood in the chilly air for a bit in the silenced glow. After hours of terror, I fell asleep around 7 AM. Dad woke me up letting me know my brother & family were coming by, & after walking the 20 steps or so to the back porch, dad & I watched the first of the hilarious Zombieland as mom got the house baby friendly. My sister-in-law & my 1 & 1/2 year old nephew were dressed as Lucy & Charlie Brown, & my brother was Obi Kenobi & my nephew was a perfect blonde Luke Skywalker. It was if they worked out how to get 2 of my favorite things from childhood together meeting! I was so sore after so came back as they left & watched more Fearfest, read some more of my kindle ghost story, took another moon shot & inverted it, & as a treat lit a ton of candles.

I got depressed again & so I reached out to my online community. I cannot stress how much having someone who can relate exactly to what you feel physically & emotionally helps. I know at any time of the day/night I can find a friend, online, who I can talk to-it is such a great feeling. Having that accessible network is crucial to coping & survival. Without being able to gt out my emotions & talk I would be an absolute basket case. I'm so lucky to have hat-I can't imagine being housebound without the technology of today. I consider myself so lucky that I am sick in a time where I am never alone-there is always someone I can reach out to-as awful as life can be I am blessed with that knowledge.

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Windy days out

Today was a good day. After listening to the wind all night, I went to the door & it was so gorgeous that I went & sat on the porch for about an hour. Mom & dad were out so I shared the porch with their cat Macy. She lets me hold her upside down like a baby, & we sat & watched the trees shake through the sky. Our neighborhood has really beautiful trees-& with the 20 mph winds the sound of the different leaves moving is hypnotic. In the backyard there's an archway with a bench & I discovered a nest which thrilled me. The arch leans like the St. Louis arch too heavy on the left side. Underneath there are big stones with butterflies, bumble bees, & dragonflies in slate blue-grey. Just being out & taking pictures was so therapeutic.

I love the textures of the branch on the right side.

The nest from the outside...

& inside.

A butterfly stone.

The leaning arch...

& the pretty wrapped, climbing vines

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Finality in Lights

I love having my new, own place. Chai bunny has loved exploring & ripping pieces off the maze of cardboard boxes, climbing up my 7 pillow stacks, searching for the previously hidden tootsie roll bag with her massive hound dog nose, & taking her stuffed friends all over to show them their new home. We put up a string of lights as a banner on my bed, adding some whimsy & light to my otherwise kept vampire-like dark I keep for my insane fibro-sensitive eyes. Otherwise I've felt I have had nothing to say, nothing to feel, just nothing. My doctor is good, although his wanting to skip a month in visits & not really planning anything new in the way of treatments is a bit worrying. I guess I feel that like an elderly person going into a home I've gotten to the place in a figurative sense I've come to die. That's ok, but just so final. One of the main reasons we moved is to be closer to family, for my parents know after they are gone I'll need help just existing...though I worry & feel badly for whoever gets saddled with the burden of me as a professional sick person. I hate feeling or thinking like this, but it comes to me when I'm sleeping through stress dreams & is on my mind when I wake up. Hopefully Chai bunny will continue to jump on my bed & wake me up with her fuzzy face & big eyes watching me as I open my eyes.

 

 

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Making the bed

I've been really sick lately. My body seems to have forgotten what proper seasons feel like, & for over a week my sinus/allergies/cold has switched into high gear. Crazy how my body forgets how to fight & adjust to something I lived with over half of my life...after living 5+ years without seasons, my compromised body doesn't know what on earth to do. All I know is that if I don't see real snow after the packing, moving, stress, etc I will flip out. Dad found a bottom/fitted sheet & brought it over. He is really busy today, so I made myself switch around the mattress pad, put on a bottom sheet, & rearrange the batik bedspread so he didn't have to come back over. I have been so happy to just have a bed, tv, fridge, & Chai bunny I've lived without a sheet for a couple of months. Your priorities change when you focus on just getting through each day & night as best you can. Chai bunny loves the new & improved bed, jumping up & thumping so hard she bounced to announce to the bed that she had arrived. Of course my body is cursing me for not waiting for bed-making help, but as the parents are sick with cold front colds too, I just wanted to do something for myself. Mom sent me these roses from one of our many flower bushes last week, & today as they are dying I fell in love with the poppy-like look of the huge middles & had to take a picture. An almost dried Cabbage Rose, watching My Name Is Earl on Netflix, & Chai bunny visits set my mind at ease a bit as I try to breathe deep & fight through one more day. & fresh sheets are just the icing on my happy little cake ;)

 

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