Oh how I love lipstick of all kinds! -except liquid lipsticks because I can’t apply them to save my life. 😳 ColourPop is no exception! I have wanted to try their lippie stix(s) probably for years now and this week I finally ordered some! I found out they have an amazing kit called “Staycation”- six of their most popular lippie and a great range of shades. The current ETA is Monday so be sure to watch out for a full first impression review!
My chronic pain life is built and falls around patterns- medication schedule, order I get ready in the morning, to the way I unwind for bed at night. The most tiring is my brain constantly, desperately seeking out a pattern in the chaos of my pain. What did I do yesterday? What didn’t I do? Did I take my pills on time? Am I becoming tolerant of my dosages? Maybe I didn’t get enough sleep? I can’t begin to replicate the the background chatter in my tired brain.
The cruel irony of the situation is I can be the perfect back care practitioner and 100% medication compliant and my pain can still tank. Just because! Compoundingissues, I also have bipolar disorder with OCD features- mostly manifests in obsessive intrusive thinking. The tasks I feel compelled to complete are all acted out in my mind. Having a legit issue to worry about, my OCD is gasoline on a fire. Hell, it pulls out marshmallows for f*ing s’mores…
Presumptuously, I’ll say most chronic pain warriors run on the same thought treadmill. We want to find any control in our own private freefall. When you’re never sure how your body may react it’s hard to feel any autonomy in life. Can I tag along on the family outing or will I have to use my wheelchair? I honestly don’t know.
I want to find the magic ritual. The perfect pattern. Ultimately, the blueprint to wrestle control of my own body back. Until then, my brain will continue its conspiracy theory style paranoid review of my life.
I hear “devastation” and think of a house blown away in a tornado- just a cement foundation left or a Titanic level industrial accident.
My life has been devastated by my chronic illnesses, but is truly devastation by a thousand cuts. My life wasn’t a one big blow life change. Over the last ten years, my life has been salted by new diagnosises or removal of one every few months or years, each with it’s own regime of medications, specialists, surgeries and procedures.
I feel like I can’t ever my footing with what my body needs. It’s difficult when I don’t know what expect from my body day to day. Can you imagine not knowing if tomorrow you’ll be up to doing your regular shopping or unable to function out of the house without a wheelchair? I love writing, but sometimes my back is too wrecked to sit up for more than a few minutes. It’s all a bit of making hay while the sun shines- except if I spent too many spoons I’ll hear about it- feel it- for days. There is no normal. There is no anticipation. No business as usual.
Devastation. My life has been razed an inumerable litany of things- large important life events to small, sweet intimate moments. I have chosen not to have children (biological, fostering, or adoption) for several reasons; primarily my lack of consistency in care giving- even for myself. Because of medication and chronic fatigue related brain fog, I’ve given over the majority of driving to my my husband. The lives of my family and friends-even my husband in a way- pass me by while I sit on the sidelines watching my nieces birthday party play out Facebook or my friends attending “Painting & Pinot” ladies’ craft nights out. My husband hosted our annual New Year’s Day Open House. It was extra special this year because we missed the last two years and it’s the first at our new home. But, I couldn’t attend an event held one floor below me. I made a fairly torturous treck to show my face for about fifteen minutes.
My life looks nothing like I wanted ten years ago, five years ago. And while I have good days, the bad days cast a heavy shadow over their light. I lacked the capacity to perceive how much physical and emotional pain a body can experience. I had no reference for how small and sparse a life could become. I couldn’t have perceived the trauma that would alter by body from external surgery scars to internal ramifications of atypical wear and tear on joints and nervous system.
I suppose this could be considered a perky ending. I do have a constant in my life, my husband Chris. He’s my cheerleader. He makes me laugh when it’s the last thing I want. He is always always here as a shoulder to cry on and as a sounding board. He has cared for me bodily after multiple surgeries when I couldn’t get out of bed, dress myself, or feed myself effectively. He is always up for facilitate getting me out of the house even if it’s just a Starbucks run. ( ⭐️ 🦌 = Starbucks?? 😜) I couldn’t love Chris more if I wanted too. It’s an especially keen ache for my disabilities to inhibit my ability to express and demonstrate my commitment and appreciation of his love and our marriage.
My last love that brings positivity in my life is music, punk, post hardcore, alternative, the headliners being Green Day and My Chemical Romance. I have downloaded 12 GB of on my phone. If I’m alone, my music is playing. I even sleep with my Bluetooth headphones on- right now even. I have great Bluetooth speakers in our master bedroom and my cherished turntable and modest vinly collection in our living room for days I can get out of bed. Besides being good music, they sing about concepts and feelings that I find too nebulous to confront head on.
I appreciate you sticking through to this point. I know it was pretty rambly and scatter shot. Thanks! Consider a like? They make me probably a little too excited to know someone chose to read my work.
Note: Chris & I are always proactive and vigilant in caring for and seeking out new possibilities for improving my situation. Sadly we hit a lot of dead ends. Tomorrow I actually have an appointment to with my pain specialist to discuss any new or different procedures that could provide any relief from my chronic severe back pain. We live in a city known for its cutting edge medical care. We live just a few hours from several medical schools as well. But, in some seasons of life, not much can be done.
After devastation, you can choose to look around and decide what is truly important and of value in your life. The things I have lost haunt me everyday. However, I hold my remaing items incredibly tight praying they aren’t the next to blow away.
I have no gainful employment. I am not the one who manages our home and daily life. But, today I took a shower. I am successful.
I haven’t driven myself anywhere in 3 weeks. I haven’t left the house except for doctors visits and an odd Starbucks visit. Last night my husband hosted his own 38th birthday party- a no stakes card game. I was able to sit through a game before returning to our bedroom and my heating pad. I am successful.
Thursday, I got very disappointing news about my severe chronic back pain. I’ve developed stabbing pain in my ribs. My nerve pain in my left leg has increased in magnitude that often it’s too weak to bear my weight. That night I channeled an old devil, picked up a blade, and cut into my flesh. I chose to fight for myself. I dropped my blade and called Chris (my husband). I am successful.
Every day I fill my home, my brain, with music that screams out the emotions I don’t possess concepts for. I reach out the friends, “just” social media friends, yet tremendously awesome friends none the less. Being home affords me time with our two dogs- stay at home doggy mommy. When my brain is clear and back fit enough to sit up, I pour into creative writing: journaling my chronic life perspectives, short stories, even the occasional vapid fan fic. Making a sandwich is a cherry on the top.
Friday I didn’t get out of bed. I didn’t eat. I didn’t shower. There was no point. I listened to one album on repeat for about 10 hours. What what’s the point? If my life is to be trapped in the torture device that is my body, if I have no true purpose, what is my purpose? Should I follow the advice from my demons? End my life. Choose my only excape. Release my husband from my demanding care and attention.
Today is Sunday and my husband turned 38 years old. And I am here. I am successful.
*If you or a love one are experiencing a period of time where you feel self harm or taking your life seems your only solution, take a minute to get an annoymous second opinion. I have used their text hotline during times I felt unsafe and they’ve always gotten me through that crisis. More info is available here. Their textline info is here.
One stigma and taboo topic in the US is admitting you need proscription (rx) medication. Even worse is taking about what you take. Pill shaming is so real especially if you have a mental illness or chronic illness. No one can “see” your wounds and people are quick to assume shit. I suppose this fear comes from many places:
*Ignorance- not fully understanding the reasons and results of proper dosesages.
*”Get over it!”- The crutch theory. This person believes people on rx for mental illnesses or chronic pain are just lazy and/or weak.
*Fear- We should be able to DO life without help. I don’t want my doctor to give me a pill for every ache and blue day. Won’t they change who I am?
*Misperceptions- They’re just turn into junkies. All those rx have to be a gateway drug. Even if not, they’re slowly crave more and more and get addicted to their rxs.
*Health Expert- Suddly they know -and educate you!- on the toxic dangers of your rx regime. They are quick with detox solutions, but come up short of treating your pain or mental health.
The only two opinions should be from your medical specialist AND you. I was diagnosed with bipolar disorder and injured my back 9 yrs ago. I’ve been all over the all over the map during the years.
I “out” myself whenever it’s pertinent. Why should I hide or be ashamed of my illnesses? I fight every day, too hard to just sweep it under ther rug. While a bit more privately, I freely talk about needed psych and pain medication.
Such issues will never get the right attention and the sigma will continue to haunt us all. Expose yourself! (Ha! No, not like that!)
I want to mpologize at the start because this will likely be short. I hope to be up to create writing again soon, but until then I want to maintain some momentum. Thanks for slogging through with me! – anne
Sadly I suppose the thing I’m most known for being sick. A lot. All the time. I have severe chronic back pain and chronic illnesses that causes extreme facial neuralgia attacks. Let’s roll all that together with resulting chronic fatigue syndrome and prexisting bipolar disorder and my life is pretty busy. My mind and nervous system are at it 24/7. Overworked. My body can’t handle much- emotionally or physically. Just maintaining daily, day in- day out, activities fry my nerves and drain my energy.
Just being me is a physically demanding, high stress occupation where there isn’t truly time off. I spent half of Christmas in bed. I missed our New Year’s Day Open House- in my own home!- because my facial neuralgia pain was terrible.
I have all kinds of trick, tips, hacks, and meds to help. At times they do, sometimes they don’t. Nothing helps the fatigue except resting, virtually still, until I’ve recharged.
There is a concept of “spoons” in the cronic illness and fatique community.
The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness.
Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons rested enough to rebuild their spoons.
One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses do not need to worry about running out. Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people to get through the day.
Spoons are widely discussed within autoimmune, disability, and other chronic illness communities, but the concept of spoons is otherwise considered a neologism. The term Spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.
Wiki- The Spoon Theory
Becoming overworked is a big danger for chronically ill individuals. Spoons are precious to Spoonies and we spend them wisely. Occasionally you can “borrow” from tomorrow’s spoons, but you’re new already in the overworked hole for a day that hasn’t started!
*This is an older writing, but I wanted to keep up my posts and this is fabulous anyways. Hopefully I will be well enough to get on some creative writting today!
I have lived with chronic pain from a back injury, leaving me in severe daily pain for nearly nine years. Two years ago I was diagnosed with trigeminal neuralgia- the most painful disease known to man & nicknamed the suicide disease.
However, am I a “good disabled” person? Do I keep my problems down enough that able bodied folks are comfortable? Does it sound like I’ve done EVERYTHING, or lay off something, or sought ever western AND eastern medical options in search of a cure? Whatever the answer, the REAL question is “Who am I really doing all that for?
Have you hear of cripple punks, or cpunks? Wha?! Right? Reading this article is a bit intense-and read it all plz!!- should very informative. Being a cpunk/ finding them is very empowering for me.
The cpunk term is not limited to those mobility disabilities: wheelchairs, crutches, braces, etc. Anyone with medical difficulties who find the self-id supportive and empowering “open”. It IS crucial for able bodied individuals to make that known.
*PLEASE be respectful with cripple punk terms and cpunk “nicknames”. It’s obviously self-pejorative term.
In September, I had an experience that turned everything on its head. My disabilities became unseen and I became visible. I will be eternally grateful to my husband Chris, Billie Joe Armstrong, Mike Dirnt, Tre Cool, and the whole Green Day crew. I’m rounding on two years trapped in the hell of a chronic pain disease. I lost the ability to drive. I rarely left the house. When I did get out often I needed my wheelchair. I was able to eat even less frequently. There were too many nights, when in the throes of a pain attack, I cried myself to sleep screaming, begging to die, to die right that moment.
My life was very small and I was a fragile creature trapped in its nightmare. I had my music. Night and day I played every Green Day album that exists. I scoured YouTube for any life performances and music videos. With iTunes playing and ear buds firmly in my ears I could have another voice cheering me on in the depths of an attack. When I was bored and lonely, I could go to a concert on YouTube or an iTunes video. Green Day arose from my old teenage angst and smashed into my little world leaving a big punk rock sized crack.
In the summer of 2016, the band announced a new album after nearly four years. Green Day fandom lost its shit and rightly so! But, before that there was the business of a little thing called Revolution Radio 2016 Tour- a very small, limited tickets tour. They were just getting warmed up. Moving heaven and earth, large sums of money, and vacation days Chris got two tickets for what became the FIRST day of the tour. He knew this small venue -1,900 capacity music hall- was really my only chance to see Green Day and he was able to pull that star down from the sky and present it to me.
We trekked from North Alabama to Columbus, Ohio. My orders were to show up ready for fun, hop in my chair (that I fucking hate!), and let Chris do the planning. Sure! I haven’t forgotten todays prompt UNSEEN. We rocked out in the best “seats” in the house- the wheelchair section. (Second row and unobstructed!)
Singing my heart out to all my personal “must hear” numbers, my disability was secondary. I was a part of the Green Day family. We sang and screamed. Followed along with Billie’s instructions- the infamous 1,2, 1-2-3-4! and Heeeeyyy-ooooooo!’s. For those 94 minutes, my disability was unseen. But, even more empowering was being WITH other people in wheelchairs there to worship Green Day as well. I saw my disability wasn’t a thing at all. My life is about what I do, what I love, and how I can “un see” my differences. They are always going to be with me, but I can stop carrying it out front feeling exposed. I’m going to toss that shit in my back pack with the rest of me and turn up “Still Breathing.”