There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.
In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.
I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.
In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.
Thank you for reading, sharing and following my blog. It really means the world to me.
I’m hoping you heard that in the Great Arnold’s voice. It’s been just a bit as I’ve been dealing with a lot recently. Hubby being deployed, being home with the adult-ish children without him to help me keep my sanity, renovations on the house that took much longer than expected and weren’t completed and now the handy-man who was doing them seems to have ghosted me, my health challenges kicking it up a notch, a couple of those kids testing the limits of my sanity and good will and just the every day challenges of being a military wife trying to hold down the fort while her husband is half a world away. In a word, it’s been exhausting and has pushed the boundaries of my mental health in ways that hasn’t in many years.
I had to step away from writing because frankly, I wasn’t able to string to sentences together. Between my fatigue, pain and ADHD, I was amazed I could put together a grocery list successfully. I’ve been binge-watching Netflix like a whore. Helstrom is incredible. I hope Netflix and Marvel can find a way to bring it back for season 2 because just wow. I know there was a lot of mixed reviews about it but I’m a huge fan of the story and I think they did an amazing job bringing it to life. I really think it was crappy timing, I guess with COVID and the shut down of Marvel studios and everything but it shouldn’t stop them from letting the series continue. But I digress- just a huge fan. I also re-started You, in anticipation of the 3rd season and let me just say that show is awesome too. Yes, it’s a little far-fetched, but it’s very entertaining and I love the inner dialogue. It’s something I can definitely relate to. Last but not least, Peaky -fucking- Blinders! Damn it if I don’t love that show. Devoured it twice. I won’t lie, I’m a Cillian Murphy girl. I’ve loved him for many years. How can you not be hypnotised by those impossibly blue eyes? -mm..my heart. Bottom line, I’ve been existing in a fantasy land these last few weeks to escape my reality because reality sucks.
My anxiety has been at an all time high. I’m angry at my a few of my adult-ish kids for their inability to even try to get along with one another. They aren’t children any more. At 26, 24, 21 and soon to be 20, I expect somewhat of self-control and respect for one another that is sorely lacking in varying degrees depending on the child. I feel like I taught them better than that, always stressing how important it was to treat each one another with respect and know that in the end they are sisters and when me and their father were gone, they’d be all they had. Sometimes, the simplest questions bring out these defensive responses, accusations and hostilities that I don’t understand where they came from. I feel like I am watching their relationships disintegrate before my eyes and because I never had siblings and I want them to preserve their relationship so badly, my attempts to salvage theirs comes off to strongly and more like a demand rather than advice. I wish they realised how lucky they are to have what they have; these individuals who would have their back no matter what, who would stand up for them anywhere, who love them fiercely. Having a sibling, especially a sister is so damn special. It’s the kind of thing that gets you through the hardest things in your life because you have this built in best friend. Someone who has known you all your life who you can tell your secrets to; someone who knows your secrets and who loves you despite them; someone that wants the best for you when you are dating and so help the person that breaks your heart. I’m not so naïve as to think that sisters don’t fight. I also know that sisters sometimes say terrible things to hurt one another. But it’s how you get through those things, how you forge ahead like in any relationship and lately, all I’ve seen and heard from my girls is such fighting and negativity that I feel like I’m living with a bunch of freaking dementors.
Still, here I am. More or less sane depending on which day you catch me and fighting each day with my chronic pain and chronic illness- fighting to feel better, fighting not to disappear into the darkness of depression because I feel like I’m free-falling into madness. It’s a struggle. Sometimes life is a day at a time; other days it’s an hour at a time and sometimes I lose all sense of time, an entire day lost to meditating some kind of peace back into my bones. I achieve this by completing mundane tasks like organising my folders on my computer like pictures and documents. Or I do dishes by hand instead of the dishwasher, if my body can handle it. There’s something quiet, peaceful and beautiful about the hot water running through my fingers while scrubbing the dishes and inhaling the delicately, scented soap. I know a lot of people would think I just a grew a third head saying that, but damn, I just find it spiritual.
Slowly, I’m finding my way back into writing. Both my blogging and creative writing. I’m working on some poetry and researching for material on a horror story I want to write. Horror is my nemesis. It’s my favourite genre, but I feel woefully unworthy of being able to write it. I am a student of Stephen King, Shirley Jackson, Richard Matheson, Anne Rice, Edgar Allan Poe & Mark Z. Danielewski. I feel like I could never live up to their genius or simply craft a story in the same way they did because I just never have. I’m a blogger. I’ve never created a story from beginning to end in the way they have and it is terrifying to me. But what I do know? No one has become anything without being afraid. You have to have a certain amount of fear in order to light that creative fire. At least it’s what I’ve heard. Mostly, it just makes me nauseated and feel like I’m going to puke. But I’m not the kind of girl who gives up. Whether it’s a three- or five-page story or three-hundred-page story, I’m going to get this done. So, wish me luck.
If you’ve stayed with me through my hiatus, thank you. I appreciate it. Sometimes we just need to recharge for the sake of our mental health and our physical health when we are chronically ill and even if you aren’t. We have to take of ourselves. Neglecting ourselves is never good. Have a great Saturday!
In recent days there’s been quite a lot of buzz in the media and social media surrounding the President and his coronavirus briefing. There’s been those coming to the defense of the President, saying he never specifically said “inject” and then the President, himself walking back his comments implying that it was sarcasm, meant to infuriate the media and so he could observe what they would do. Before I continue, here’s a portion of what was said.
“Supposing we hit the body with a tremendous — whether it’s ultraviolet or just very powerful light,” Mr. Trump said. “And I think you said that hasn’t been checked, but we’re going to test it?” he added, turning to Mr. Bryan, who had returned to his seat. “And then I said, supposing you brought the light inside the body, either through the skin or some other way.”
“And then I see the disinfectant where it knocks it out in a minute — one minute — and is there a way we can do something like that by injection inside, or almost a cleaning?” he asked. “Because you see it gets in the lungs and it does a tremendous number on the lungs, so it would be interesting to check that.” Trump Muses About Light As Remedy
I’ve read opinions in posts circulating social media, suggesting that they are in health care and that what the President misspoke as “disinfectant” (he never said Lysol specifically…) could have meant a procedure known as lung lavage, where antibiotics and other medications can be injected into the lungs so they can be “washed,” giving the patient the ability to breathe better. It’s commonly called lung washing; “this procedure treats the rare lung disease pulmonary alveolar proteinosis (PAP).” How Lung Washing Helps Patients Breathe Again The article does say, which you can read for yourself by clicking the link, that it doesn’t work on any other lung conditions (diseases). However, they do use this technique for Pneumonia and they also use something called Bronchoalveolar lavage (BAL) (also known as bronchoalveolar washing) for Interstitial Lung Disease and COVID-19, as a diagnostic tool and therapeutically to remove mucus, improve airway ventilation, and reduce airway inflammation in conditions such as chronic obstructive pulmonary disease (COPD). Bronchoalveolar Lavage I’m not a pulmonary therapist; I researched this information to make sense out of what I had been hearing.
The first thing I learned, about the importance of your platform and how to use it, is this That the President clearly doesn’t understand the magnitude his words have on his platform and that the extent of those words goes way beyond the obvious political, “I’m King of the World,” mentality.
It’s interesting to me the debates people are having across social media and how some revolve around the semantics of how the President used the word “injection.” Some argue that he did not mean to inject something into the lungs, with, what I am presuming is a large needle. Others have zeroed in on the use of the word disinfectant, and how the President seems to conclude a relationship between the disinfectant used in a lung lavage and Lysol or Clorox (bleach) that you would disinfect your countertops with. Disinfectant Makers Steer Consumers Away from Trump’s Coronavirus Comments Still others, use a red marker to indicate that the President never used specific product names, like Lysol or Clorox and it was narcissistic on the part of these manufacturers to think the President was referring to them. But then you have the President himself, who attempts clarification of his remarks by saying,
There were very few people arguing about the 1.) The intent of his words, 2.) The impact of his words on his, 3.) or the consequences of his words on his listeners. Every person who has a social media account and accrues followers, who have some kind of purpose for being there, be it a cause they are passionate about, a message they want to send, or maybe they’re an entertainer, model or visual artist (the list is infinite); those people have now acquired a power- an audience. We take that power for granted. It’s just social media, but it’s much more than most care to admit.
The second thing I learned, about the importance of your platform and how to use it, is Intent, Impact & Consequence. As a writer, it’s important to step into your words with Intent. It’s not as esoteric as it sounds. There’s no chanting involved or mystical music. The only purpose; setting intent.
If you practice yoga or mindfulness, you know a little about intent. An intention is not a goal. It’s something you want to align with your life; it’s an expectation or attitude you’d be proud to commit to. It has to come from your heart and soul. Setting intent in your writing is not much different. It’s a commitment to setting a purpose in regards to your words. Understanding that when you send your writing out into that perceived void, that it’s not that at all. It’s a space filled with living, breathing, humans who have hearts and souls like the rest of us. Intention Setting
Social media has changed our relationship with words. It’s changed how we communicate with people and how people hear our voice. In some, this change has been empowering. They have been able, through the use of their platform, bring awareness to those causes that are meaningful to them. Whether it’s money through fundraising or raising awareness of a rare disease, these voices use their platform and their voice (words) for the positive. Conversely, some people use their platform and their voice in a way that is negative.
I believe, as a writer, that my words are powerful. My words, like an artist, paints broad and delicate strokes across the canvas bringing to life a picture for my readers to see. Sometimes, this is a very literal picture. Other times, it isn’t so much a picture but emotion, that I am drenching the reader in. Sadness, loneliness, anger, happiness, anticipation, joy; all of these feelings could wash over a person in one blog post. Each word was carefully chosen to convey a feeling or meaning in my heart. Not everyone is as thoughtful and social media has become a grey space where people do not honor the living, breathing, the human being behind the screen. As we are thrust into Twitter or FaceBook (only to name a few), people feel it’s perfectly okay to express their opinion or thoughts, without any “thought” as to how it may impact anyone beyond the initial self-gratitude of getting that idea out, or those little likes people click, which can become addictive. They deny any responsibility for how their words may impact another person reading them when the first and cardinal rule of any writer (someone who writes any words to be seen by another) should be ownership of your words. If you don’t own your words then they aren’t yours to begin. You have to be prepared to go down with the sinking ship, which is why a writer should take care with words. They should be thoughtful as to the intent of their words and how it will be interpreted. A meme I’ve seen reading something like: It’s not my problem how you interpreted my words. It doesn’t work with a writer; everything you want to be heard- your only tools are your words. There’s no tone of voice, no inflexion, no facial features or hand gestures. However, it types out is how someone out there will read it and it will have an impact on that person. End of story.
The third thing I learned, about the importance of your platform and how to use it is how your words can Impact people you don’t know. Everything we type can have a major impact on another living, breathing human. The problem is most of the time we can’t see how our words impact people. They are sent into the ether of the internet, sometimes lost in the shuffle of all the other posts, but somewhere out there, someone is reading it and you don’t know the situation of that person.
The fourth thing I learned, about the importance of your platform and how to use it, is, how your words have Consequences that you must own. Most people think of consequences as negative. But everything we do, every action, has a consequence. It’s not necessarily bad, but we have to be willing to embrace the negative as much the positive.
“Sir Isaac Newton taught us that for every action in the physical world, there is an equal and opposite reaction. This principle not only applies to the physical world but in other areas of life as well.” Actions Have Consequences Every action we take produces a reaction and consequence. You yell at your friend and they start to cry. Their crying is a consequence of your yelling. You’re angry that your boyfriend cheated on you and you take to social media, not only attacking your ex’s actions but him personally and the girl he cheated on you with. What you don’t know is that the girl battles depression and that he never told her had a girlfriend. Your words have an impact on her. She plummets into depression and attempts suicide, for reasons you may not understand. It’s easy not to bear a responsibility such as this. The responsibility that your actions may have driven another person to an action that could have cost them their life, but it is your responsibility to bear. Life brings both good and bad consequences depending on our choices and it doesn’t matter if we say it on a platform and the person that is affected is 3,000 miles away and we didn’t know them. It is my opinion, my belief, that this inherent lack of understanding within humanity, is at the core of many of our problems. We have stopped viewing one another as humans who directly affect one another because of the great chasm of space the internet has created between us. Once we can take responsibility for the impact of our words, and the consequences our actions may have on other people, we may become better as a human race. We can begin this, in part, by committing to operate using these platforms with an intent that is aimed toward positivity and goodwill.