As the quote goes, “the best laid plans of mice and men, often go awry.” No truer words can be said, especially for those of us trying to manage chronic illness. It often feels like one thing after another (and a lot of times it actually is), which wrecks the best of our intentions. This is how life has been in recent weeks for me. There was illness, there was not getting over said illness (which even now I struggle with remnants of), there has been flaring and there has been the grief and devastation to sort out after needing to put down our long-loved dog of 14 years.
Our boy, Grissom.
Needing to get back to work on my blog, as much for distraction as my having neglected my blog, I considered what topic would be best and I decided on ways you can be productive/ have a productive day with chronic illness. It fits, right? Because, often-times when we are struggling with constant symptom or flare-ups of one symptom after another, it has a snowball effect on our lives and what we had planned to do. Here are some tips that I hope may help you to create a better atmosphere in which to work and flourish.
Spoon Theory is a way to illustrate the energy limitations that can result from living with a chronic illness. Look it up and take it seriously, if you haven’t already. Break down tasks to make things more manageable. Listen to your body. Only you know what you are able to do, without causing further havoc on your body.
Relax. But only enough to give yourself a breather between tasks. It’s a balancing act between working, resting and not over-working yourself to exhaustion and further flares.
Remember that productivity will vary from person to person, even those sharing the same chronic illness. Don’t try to be anyone else. Just be you, boo.
Pacing. To sum it up briefly, according to Psychology Today: Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Learn about it and practice it. Know when you function best. Morning person? Night person? Somewhere in between person? Figure it out and utilize it to your advantage.
Alternating different tasks can also be beneficial and not just necessary for someone like me who struggles with ADHD. When you alternate tasks between a physically demanding or mentally and emotionally demanding task and do something else you are allowing yourself to rest, or decompress, so that you can return to your task and finish it later with the same energy you began with.
Remember life rarely goes as planned, and that dealing with unforeseen tasks such as a sick child, computer malfunction, or other emergency can use up all of your energy when you are chronically ill. And to make matters worse, you often feel as though you are falling behind on your tasks. Which may be true, but not something that can be helped and you need to be gentle with yourself. If possible, add white space. This is essentially, some buffer space into your day or week to prepare or catch up on work.
Triage your to-do list. Seriously- split up your assignments into “Must-do” and “Would-like-to.” It’s also a good idea to have a back up plan for bad days so that when something does happen it doesn’t send your anxiety into over drive and unmanageable levels.
Reconsider your timing for caffeine. (Don’t hit me!) I know that morning latte or espresso can be a literal life-saver. However, caffeine is known to raise cortisol levels, but when you wake up, your cortisol levels are already naturally high to prepare your mind and body for activity. So, when you are enjoying that early morning, please wake me up, brew, you could be creating unnecessary stress, leaving you feeling jittery or in a slump just a few hours later.
These are all manageable ways to create a working environment, or even just a way to function with day-to-day tasks, that helps you thrive. Living with chronic illness can often make us feel less than. Less than who we were before chronic illness, less than our healthy colleagues at work, or less than our friends. Utilizing these little changes can help you feel more like yourself and give you that little mental bump you need to feel good about what you can accomplish.
It’s almost a full week into January as I write this, and it’s been a whirlwind, for sure. Coming back from the holidays, you can feel exhausted and energetic all at once. You’re exhausted from parties, get-togethers, family, and vacations, while feeling energetic and optimistic about the New Year and the new changes you’ve decided to make in your life. I purposefully say ‘new changes’ instead of ‘resolutions’ because I’ve always hated the mandatory resolutions that came with New Year’s Eve. It felt like before that ball dropped or before it turned 12:01, if you didn’t have a resolution, you had failed in life. But the truth is that most resolutions fail. As I open up my handy-dandy statistics book (OK, it’s Google, but listen anyways), only 9–12% of people keep their New Year’s resolutions. [1]According to a 2016 study, of the 41% of Americans who make New Year’s resolutions, by the end of the year, only 9% feel they are successful in keeping them. [2] I won’t continue throwing statistics at you, because statistics give me a headache, but mostly because that isn’t what this is about. What is this about, you ask? Let me tell you.
Like most of you, I keep up with my friends out of state on Instagram and Facebook. I was scrolling through the other day when I came to a halt on one of my old school friends. Her name is Jennifer, and she is a pastor in, Pennsylvania. You can tell through her posts that she is an inherently kind person, that she puts forth great effort to practice what she preaches, and that she has a great sense of humor. I have been a great admirer of her posts for a long time now, and during the pandemic lock-down, I found her to be incredibly inspiring. Her New Year’s post is equal parts inspirational and motivational.
Taken from FaceBook
Taken from FaceBook
As we head into the New Year, we are often looking backward into the year before or even further back to mistakes we’ve made, failed accomplishments, or things about ourselves we need to fix. We are seeking ways to “try again” instead of starting over. A new year should be about starting fresh, and I love her idea of choosing a word to focus on instead of something to fix. I am the type of person who can get bogged down in details and lose focus on the whole picture. It’s why I practice meditation, and this is a lot like meditation. You choose one word to be your focus for the year, and then you use that word to set intentions for the year.
“Willpower,” for example, could encompass passing the cheesecake or wine at a party if you are watching your weight; it could include hitting the pavement at 5 a.m. to get that run in; or it could entail setting boundaries and having the strength to say no to a toxic relationship in your life. Another word is “journey.” Maybe you have a goal like finishing school or getting that extra degree. Is there an idea for a business that you want to get off the ground? These are all journeys that we take in life that are sometimes long roads with ups, downs, and detours.
Your journey may be a physical one, like a move across the country or out of the country. Maybe a trip by plane, train, or car is something you’ve been putting off. Or is this a metaphysical journey of the self or a spiritual journey of the soul? These are all journeys, and while your focus word may be that one word, it can unite with so many different aspects of life, allowing you to delve into different parts of yourself, your life, or your relationships.This is also an invaluable tool for the Spoonie community. These intentions that you set for the year allow you to focus on all these different aspects of your life at your own time and pace. I think it’s a kinder and gentler way to approach New Year’s goals without having a resolution breathe down your neck, that most of the time fail miserably. Let’s look forward to the New Year and all the possibilities that await us and what are you waiting for? Choose that word for the year! Here are few to get you started.
Created by Liza Zoellick w/ texture by Spidergypsy @ DeviantArt
Here’s a glimpse into a marriage where there’s chronic illness eating away at what was a healthy couple’s life. I am not making a distinction as to man or woman because frankly, I’ve seen this all too many times in either gender, so I don’t think it matters. It’s not really a male or female thing. It’s an understanding thing and a communication thing. Many times, this goes down in social media. A call for help. Here it goes: Individual with Chronic Illness: Hey guys it’s me. It was a bad day and I’ve been really sick. The pain has me so I can sit up without the world spinning and making me so nauseous I vomit. If that wasn’t enough, I have a sinus infection. I haven’t been to work and it’s causing financial strain. I’ve been told to buck up. I have to move on from this pain. I can’t sleep forever and there’s things that have to be done. They are resentful of having to do everything after long days at work and also needing to keep up with children. I get this. It’s not like I want to be laying here in pain. I miss work. I miss being useful. I’ve tried getting up but vomiting on standing is a great deterrent. Still, I’ve made my decision. For the sake of my marriage and my job I am ditching my doctors and my meds and I am getting up. Mind over matter as they say. I will do this. They will be proud of me. I don’t want to lose my marriage because I am weak. Wish me luck, I will need it.
First, as many of us are in groups for chronic pain or fibromyalgia or other chronic illness, we are only getting once side and it’s easy to hit that keyboard, typing out emotionally. I’ve done it. Not too long ago as a matter-of-fact. But we may not be getting the whole story. It’s not to say our friends aren’t telling the truth, but it’s just a general fact. Like any marriage, we aren’t privy to what is happening behind closed doors and that is very much the same when it comes to social media. We only know what one person is posting. That being said, being reactionary to a problem has never worked for anyone and making someone feel guilty for being sick, when it isn’t their fault for being sick is a terrible thing to do. As every therapist has ever said, communication, communication, communication. Two people who are invested in a relationship who are dealing with something as invasive as a chronic illness, need to sit down and talk about it. Ditching doctors and medicine and pretending like it’s no longer there will not solve a damn thing. You don’t pretend like you don’t have cancer and survive it for very long and while chronic illness may not kill you outright, it will kill your relationship and your career, if you don’t learn how to deal with it in a meaningful and logical way. That means sitting down and talking to your significant other and working out how you divvy up chores. What are you able to do on a day-to-day basis that won’t leave you so exhausted that you aren’t able to function the rest of the week? What are you able to do during the weekends that will lighten your load for the week, like preparing meals ahead of time or prepping work clothes or getting things ready for the kids? There are ways to work around chronic illness with your partner if you collaborate with one another instead of work against each other.
The partner who is chronically ill may be experiencing a deterioration of the body due to illness, but you as a couple, are experiencing a deterioration of communication due to an inability to come to terms with reality. Your significant other is trying to maintain life as it was before you got sick [Before Chronic Illness], while you are trying to navigate life with your illness, coping with bad pain days that leave you unable to get out of bed [After Chronic Illness]. You’re both speaking a different language and it’s nobody’s fault, really but it is society’s fault for shouldering the blame on the chronic pain patient and saying they need to, “buck up,” and that they need to “just get over this and move on.” Did that sound too harsh? Are you thinking, “c,mon now, no one really says anything like that anymore?” They actually do. Not just loving partners to one another, but doctors to patients. I know, right?!
From The Mighty
Take a step back and remember that there’s a reason you are together. Remember that togetherness isn’t all about the good times. Sometimes it’s about looking at things differently and choosing to view it through a different lens so that what may have once seemed like a crappy deal, may now be a gift you never knew existed or a possibility that you never realized lurked behind that door. It really just depends on how you frame things and sometimes it’s not easy and it takes time to learn how to look at things differently. You can’t be upset at your partner for not catching up to your way of thinking and you have to be understanding that it may take time for them to catch up. Remember, it’s a life changing adjustment for both of you regardless who has the illness. But it is worth it in the end. You are gaining peace. You are gaining understanding of one another and you are gaining more time with each other.
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,
“I was asking a question sarcastically to reporters like you just to see what would happen,” he told journalists at an event in the Oval Office. Trump Says Remarks Using Disinfectant
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.
When people hear “mindfulness” I think they immediately take on a petrified expression, expecting a host of complicated philosophy that can be impractical for most of us. But in reality, much of what mindfulness embodies are things you are familiar with and which you can not only practice, but teach to young children.
Something I read or heard about recently that captured mindfulness and the nature of my friend Lisa, who recently lost her battle with breast cancer, is the idea of being a “Day-Maker.” She was the type of person who radiated such warmth, that you wanted to get closer if only to feel it glance your cheek and whose laughter was so contagious that you’d fall into a fit of giggles right beside her. To me, she illustrates perfectly, the concept of Day-Maker.
Working in retail and dealing with people from all walks of life, who come into the store having all kinds of days, Lisa was always adamant about treating people with kindness even if they weren’t being the same way in return. Why? Because Lisa had battled cancer six times at that point and understood that our brief interaction with customers could never convey whatever battle they might be facing. For example, she would say: “Maybe John just found out that he lost his job. Or, maybe Jane just lost her mother. Or maybe, Debbie just found out she has cancer.” There could be any number of reasons for why someone is acting the way they are that we will never know. So, Lisa felt that it was imperative to treat people with compassion and compassion and mindfulness go hand in hand. In fact, there is research to suggest that being mindful makes you more compassionate, but Lisa wasn’t aware of any of that. She simply did it because that is who she was.
So, how was she a day-maker and how can you be too? Lisa brought a smile to every situation. She spoke with kindness and encouragement always. I am not saying that she was Zen-like and didn’t have a temper, but that more times than not she considered how her words were going to affect a person. She tackled difficulties (both people and situations) with hope, optimism, love and compassion. Even in her own life, and her own situations, dealing with her cancer she never gave up hope. And when there was no more hope and she was faced with death, she still managed to see the brightness in that. Now, we’re not all built like Lisa. I know I tried to emulate her and failed because I am far melancholier than she was, but you can still be a day-maker.
Just think of it as bringing a little, unexpected sunshine into someone’s day. It can be a friend, a co-worker, a client, a patient, a neighbor and yes, even a stranger. We’re all pretty hardwired to think the worst in people and at the very minimum, simply not expect a “free” or “no-strings-attached” kindness, from someone that we don’t know that it usually surprises us. These instances of being a day-maker do not need to be much to truly affect someone. Here are some examples of how you can be a day-maker.
·Smile and say hello to a stranger: We live in a world where people have fallen victim to their phone and texting. Human contact is becoming less and less. But, that smile and meeting someone’s eyes is something that cannot be conveyed in text and when relating to people you do not know, can break the ice in an instant.
·Tell a co-worker or even a friend or nighbour how much you appreciate them: We often fall into a pattern of life and forget to tell people they are important. We also can fall into a pattern of only bringing up the negatives, thinking they already know the positive. Hearing the positive can really make a difference in how people respond to you.
·Take a moment and call that friend you haven’t chatted with in ages: In a day of social media and texting we don’t connect with people’s voice and through their voice, them. Hitting like or posting a pic of where you went on vacation is static and not the same as picking up your cell and calling them. It may really be something that changes their day.
·Pay for someone’s coffee, meal or groceries: Being a day-maker does not need to be expensive but if you can, this is one of those gestures that is wholly unexpected and can really brighten someone’s day. Also, if you travel the tolls frequently, paying for the person behind you is something inexpensive that you can also do.
·Spend time at an assisted living facility: It is sad to think that many people in these facilities either have no family or don’t have contact with their family through distance or neglect. You can really be a day-maker by visiting one of these facilities and spending an hour with some of the residents. Just call your local facility and ask if they have volunteer options or if you are able to visit once a week for an hour and maybe read to a resident.
So, what’s stopping you? Be a Day-Maker! We can all be Day-Makers. We can all bring a little sunshine into someone’s life. And you don’t have to believe in karma, but I do believe we get what we put in to the universe.
Happy Thanksgiving!
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