What could you let go of, for the sake of harmony?
Getting a diagnosis of a chronic illness, or even experiencing an injury that fundamentally alters your life’s path, can be absolutely devastating. The initial shock, the grief, the fear – these are powerful emotions that are unlikely to remain static. Your feelings today are not what they were yesterday, and they will almost certainly evolve in the months and years to come.
My first piece of advice is simple: take things day by day.
Photo by @epil_epsy_ogue
It takes time to process such a monumental shift. For me, it took five years to truly begin resetting my way of thinking. I had once made plans to move far away, back to a place I’d lived before, but that location was distant from my family and my vital support system. My career aspirations also underwent a radical transformation. As I came to terms with the possibility that I might never drive again, I began researching careers that significantly reduced the need for me to be driven frequently.
This journey is one of constant development. It’s about gently letting go of who you used to be, and with it, all your original plans and expectations. This isn’t an ending; it’s a powerful shift. “This is who I am now,” I tell myself, “and I am okay with it.”
It will indeed be a long journey, filled with days that are better than others. And it’s perfectly okay to not be okay! Feelings of frustration, disappointment, and even anger are normal.
There will be things you once enjoyed doing that you can no longer participate in, and it is right and healthy to mourn those losses. But remember, you are still that same great person. Your contributions to the world may simply take a different form. You can absolutely still be a dignified, social, and beautiful person, despite an illness.
In the context of these feelings, achieving harmony refers to a state of inner peace and balance that can exist despite challenging external circumstances or waves of negative emotions. I admit, this is far easier said than done.
Photo by Shiva Smyth
It’s about cultivating an equilibrium within yourself, where diverse emotions, thoughts, and experiences can coexist without spiraling into internal conflict or distress. This often involves practicing positive self-talk, leaning into your core beliefs, and grounding yourself with the support of friends and family to maintain a stable emotional state.
For the sake of this inner harmony, I am actively working to let go of my expectations of perfection for my future. I encourage you to join me on this journey.
How would you answer the question above? Let me know in the comments.
Living with chronic illness comes with its own set of challenges, and one of them is dealing with people’s reactions when you tell them about your medical condition. Here are five common responses and suggestions on how to handle each situation.
1. “At least it’s not cancer.” And if it is cancer, at least it isn’t this particular type of cancer, or you would have died already. It’s disheartening when others downplay your experience by comparing it to different conditions or other people’s situations.
Remember, their comments are not about you, but about their own discomfort with the topic of any chronic illness. For your own mental and physical health, it’s best to ignore these remarks.
2. “I know the cure.” They had a cousin, who knew a guy, whose wife did this regimen and now she’s cured! So you should definitely do that so you can get cured too. (Even though there is no cure to your illness.)
Many well-meaning people may suggest unproven remedies or miracle cures, despite lacking any medical knowledge about your condition. Politely acknowledging their advice while asserting that you have a team of medical professionals guiding your treatment can help maintain boundaries and prevent further unwanted recommendations.
3. “Well, you don’t look sick.” This response stems from their preconceived expectation of how chronic illness “should” look, and if you don’t fit inside their stereotypes, it causes people to doubt your experience. Educating as many people about not all illnesses are visible may foster understanding.
But if you have already calmly explained the concept of invisible illness and how it impacts your daily life and they still do not believe you, it is best to accept that not everyone will comprehend your personal trials.
4. “Tell me more about…” Some individuals genuinely want to learn about your condition. While it might be intimidating at first, try to embrace these opportunities to educate others about your chronic illness. Increasing awareness can combat misconceptions and help create a more compassionate environment. If you find reliable resources, apps, websites, even influencers that provide accurate information about your specific chronic illness, so you can help educate others, Who knows, they may even become advocates to raise awareness in turn!
5. “Your struggles are powerful.” Over-sympathizers might shower you with well intentioned prayers and sentiments, but their constant emphasis on your epic struggles can be overwhelming. They may have the best intentions, yet we do not need to be reminded that we struggle every day. We live it; we know. Remember that you are more than your illness, and it’s okay to politely remind them that you appreciate their support while still maintaining personal boundaries.
Have you encountered any of these responses when disclosing your chronic illness to someone new in your life? What was your response?
Taking care of your teeth is important for everyone, but it can be particularly challenging if you live with a condition that causes involuntary clenching or grinding of your teeth. Did you know that dentin, the substance that makes up the bulk of your teeth, is the hardest substance in your body (with bone coming in second)? When you have a medical condition like seizures, it’s essential to take extra care of your oral health to avoid injuries and long-term damage. In this post, we’ll explore some practical tips to help you care for your oral health.
Photo by Pixabay
Find a good dentist. Having a good dentist as a part of your healthcare team is crucial when dealing with a chronic illness that affects your oral health. Be sure to inform your dentist of all your medical conditions. Seizures themselves can cause oral injuries. Some anticonvulsant medications have oral health side effects. Working closely with your dentist, you can help make a plan for oral health that fits your unique situation.
Get a mouth guard. Using a mouth guard can be a game-changer if you experience clenching or grinding of your teeth due to seizures. Your dentist can customize a mouth guard specifically to your mouth and needs, or you can buy one over-the-counter and custom-fit it yourself. Your dental insurance may even cover the cost of your guard, or at least reduce it. If you choose to buy one over-the-counter, just know that getting the perfect fit takes a lot of patience so be sure to read instructions that come with the kit.
A mouth guard can help prevent irreversible enamel damage caused by seizures, as well as prevent any further wear and tear on your molars. Talk to your medical professional to see if a mouth guard would be beneficial for you, and don’t hesitate to ask your dentist for advice on choosing the right type of mouth guard for your needs.
Use an Electric Toothbrush. Using an electric toothbrush can make brushing easier and more effective, especially when you’re dealing with a medical condition that affects your oral health. The oscillating and rotating motion of an electric toothbrush can help remove more plaque and bacteria from your teeth, giving you a cleaner, healthier smile. If you can afford the luxury of an electric toothbrush, it’s worth investing in one. Look for one that has soft bristles and multiple speed settings, and consider getting one with a timer to help you brush for the recommended two minutes. With proper use and care, an electric toothbrush can last for years, making it a smart investment in your oral health. Just don’t neglect to floss just because you have a fancy new tool!
What is the best thing that you have done for your oral health? Do you see the dentist at least once a year like the American Dental Association recommends? Comment below!
In 2020 over 37 million Americans were living below the national poverty level and were food insecure.
What is food insecurity?
Being food insecure is when you are unsure when or how you will get the next meal. Many factors can cause food insecurity. There are some Americans that are just above the national poverty level that also struggle to have consistent meals.
People living with chronic illness or disability can find themselves in poverty. These conditions can easily prevent earning a steady income. Whether it be from physically being unable to work, or discrimination in the workplace.
Medical visits are likely often for these groups, and medical costs can quickly become overwhelming. Tasks that abled people often take for granted may not be feasible for disabled or chronically ill persons. Tasks such as grocery shopping. These conditions make these groups likely to face hunger.
How you can help: Donate food, donate time, donate money.
Donate Non-Perishable Food: boxed meals, canned foods (meat, veggies, fruit), cooking oils, dried herbs and spices, granola bars, instant mashed potatoes, pasta, rice, shelf-stable milk, whole grain cereal, are a few examples. Avoid Donating: items packaged in glass, or cellophane. Go the extra mile: Call your local food bank and ask what items they are in need of, before donating.
Donate time: Some food banks rely heavily on volunteers especially during the colder seasons. Transporting, prepping, and serving food are all jobs that can make a huge impact on many families, children, veterans, chronically ill, and elderly in your community.
Donate Money: whether it be a monthly donation or a one time gift, every dollar is appreciated. Just a donation of 5 dollars provides an entire meal, and then some. Stocks and mutual funds can also be donated. Contact your financial advisor and the charity you wish to donate to for the information needed. Most organizations are able to take donations by phone, mail, or online.
Food insecurity is a year round issue. Although the winter season is known for the season of giving, consider donating any time of year. Any, and all help is appreciated.
Find a food bank near you or donate to Feeding America. Feeding America is the largest hunger relief charity in the United States. I am not affiliated or sponsored by Feeding America. For more information, other facts visit feedingamerica.org or click on their logo below.
How do you help combat hunger in the United States? We would love to hear your story! Please share in the comments below.
Trying to be “perfect” with a chronic illness is impossible. However, being open to learning about yourself, and adapting to your ever-changing situation, can help you thrive in ways that may seem unattainable. Here are three basic things that greatly help manage living with chronic illness.
Turn Bad Days Into Good Data
There are no avoiding bad days when you have a chronic illness. There is no doubt that a bad day can cause feelings of anger, frustration, and grief when losing another day to your condition.
One way we can turn them into a positive is by learning everything we can about those days. Analyze your day or week leading up to that bad day. Was it food, lack of sleep, and/or activity that triggered this bad day? If you are not sure, keeping track will help you see patterns you never noticed before.
Sometimes with chronic illness bad days happen for no particular reason. But perhaps you can find something that you have the ability to manage. Changing that one thing can perhaps decrease the frequency and severity of the bad day.
A health journal can be an ally in tracking your ups and downs. You can create a diary on paper, or look for apps that fit your needs. Along with tracking the “what went wrongs” do not forget to note the “what went rights.” Remembering to mark those positives can help maintain perspective.
Treat Your Emotional Health, Not Just Your Physical Health
With chronic illness you more than likely have been prescribed medication (or several) to treat your physical health. You have maybe changed your routine, or added an activity in your life to help cope with your chronic illness. But have you added anything to help improve your mental health?
Sometimes people feel like we must hide our illness, or just “tough it out” but that can be extremely detrimental to your mental health. Along those same lines, mental health can be extremely detrimental to your physical health.
Take the time to acknowledge your emotions, so that you can deal with them in a healthy way. If you are unsure how to start, reach out to a professional to help guide you in your mental health journey.
Be Forgiving
Would you treat a friend badly because they had to cancel plans because of their chronic illness? I assume not. So why would you be down on yourself when you have to? Treat yourself how you would treat a good friend in the same situation.
Replace judgemental thoughts with love and forgiveness. When you catch yourself saying or thinking a negative thought, stop, and reframe the thought. For example, I find myself thinking “I’m so pathetic” quite often.
When I catch myself in those moments I stop, take a breath, and change that thought. “I may not have been able to open the jar, but I tried, and asked for help when I needed it. And for that, I am proud of myself.” This may seem difficult at first, but the more you practice, the easier it becomes. Eventually, you may even find yourself skipping the negative thought in the first place!
Spirits were high. One by one, co workers, friends, and my family were getting vaccinated. There were the range of reactions. Some people were incapacitated by their flu-like symptoms, and others felt almost nothing. But one thing that everyone had in common, is that the second dose was an intensified version of the first.
Regardless, we finally felt as if things were moving forward, towards an end to this devastating pandemic.
The first vaccine was administered indoors 😷 and precautions were taken seriously. Side effect was body pain, but luckily no fever, or feeling sick.
After my initial dose, the department of health informed me once the booster became available. The email came more quickly than I expected.
The Department of Health scheduled my appointment at the same location as the first shot. It was within the 28day range; I didn’t even have to do the math! Easy peasy. 👍
Saturday
Although it was the same location, the set up was different. It was a drive through, when the initial dose was administered indoors.
Drive through vaccine?! I thought, What an age we live in! 👏
Two separate lines of cars filtered through two tents, ending at 4 people administering the vaccine. It was much more relaxing, being in my own space, with the comfort of our SUV’s heated seats.
As we pulled up to get the shot, I immediately wished I had put more thought into how to get my arm in a place where she could access it.
In a quick decision I draped my arm out the window so it would be easier for her to get to. It was a terrible decision.
The angle of my arm left my muscle in an award position, and didn’t let it relax fully. She inserted the needle and it ripped through a bit of muscle. As the plunger was pushed, the liquid shot too deep and I could feel fibers of my muscle separating. I knew I was doomed for a long recovery for the arm pain.
It was not her fault at all. It was all me, because I didn’t plan ahead, or simpler yet, let her guide me.
A parking lot adjacent was the area for the 15 minute waiting period. A nurse gave us the batch lot number to fill in my vaccine information card. The other cars in the waiting area probably thought I was dancing the YMCA because I was trying to work my muscles, hoping it would make it feel less terrible the next day. 🕺
Sunday
04:30 am. Woke up with terrible whole body pain. The CBD cream wasn’t enough. It was time to bring out the heavy hitter: 200 mg of Ibuprofen. Laying down was terrible, but I could hardly hold up my own weight if I stood. The minutes crawled by as I waited for the IBU to kick in. When it did, I was able to fall back asleep.
My partner woke me up at 8 to take another pain reliever, and I immediately fell asleep on the couch. I woke up again just to go back to bed. A bit of food and maintaining the pain reliever schedule helped enough to be able to sit outside and enjoy the lovely day. I took a few more naps that day; my body was working too hard to expect any more from it.
Monday
02:30 a.m. The dog went out to pee and one of our neighborhood skunks was in our yard. After that adrenaline rush subsided, I realized that although I felt significantly better, my elbows, hips, and knees were still very sore. So much so that a Tylenol was needed to let me fall back asleep.
09:00 a.m. Thank goodness work started late today. The morning shower definitely took longer than usual just because my body was still not 💯. It was a staff meeting Monday, meaning zero physical exertion, just mental. Apparently that was too much. I had to turn my video off and lay on the couch and just listen to the meeting, twice. My boss knew I was struggling with the after effects of the vaccine, and has been so understanding to all of her staff as we struggle with our shots.
Tuesday
A bit of sore knees, hips, and elbows, but nothing tylenol couldn’t help. By the afternoon, I was giddy just because I felt like me again!
Overview
As expected, the symptoms were the same with the first dose, but with more intensity. Sticking to a pain reliever routine was greatly beneficial. I pushed fluids to help defend against possible fever.
Overall, I am very thankful for my opportunity to receive the vaccine. This is a small step towards a common, world goal. Being vaccinated has me daydreaming even more about what thing I am going to do when things get back to “normal.”
Have you gotten your COVID 19 vaccine first or second dose? Did you have a different reaction the first and second time? Let us know in the comments.
Phase 1a of implementation of vaccine is available to healthcare workers. This is a category that I happened to fall under. The following is my experience as a person living with uncontrolled, medication resistant epilepsy, and recommendations based upon that experience.
Consulting with my neurologist, he assured people with epilepsy who are receiving the vaccine are not experiencing any new/different side effects than those without the condition.
Fever, fatigue, and pain are triggers to my seizures and they are the most common side effects of the vaccine. My nurse requested that I monitor my temperature and any symptoms and report back. She asked if she could share my experience to others with epilepsy if they had questions. (Of course I said yes. That is the purpose of this blog: to share my experience in hopes it helps at least one person.)
We made a seizure action plan.
The vaccine appointment was scheduled as early in the day as possible. That way if any symptoms arose, or I had questions, I would have my primary care & neurologist available.
My partner was lucky enough to get the day of the vaccine (Friday) off of work so that he could monitor my well-being. Having fatigue be a concern, I appreciated having the weekend to be able to recover.
We also made sure we had a fresh refill of my rescue medication. It would be on standby in the event of increased seizure activity with the development of any side effects.
Although allergic reactions to the vaccine are rare, we had the epi pen at the ready. There are many medications that I have developed an allergy to, but no vaccines.
But when I say the allergic reactions are rare with the vaccine, I mean rare. Out of the 1.9 million people who got the Pfizer vaccine in December, only 21 people developed anaphylaxis. *
I kept in mind my “why”
It may have seemed like I had everything under control with all the planning, but sadly that was not the case. Sleep was difficult because of my anxiety. My ambivalence almost caused me to cancel the appointment. I second guessed myself on if it was safe with my epilepsy to get it in phase one. Expectation and anticipation of the unknown were the key to my misery (it always is).
Should I wait for more people to get it before I am willing to subject myself to this new thing? What is more frightening, the vaccine or COVID itself? (Answer: Getting COVID unprotected)
The day before the appointment, I had a breakthrough in clarity. I have a responsibility, to myself, to my family, to my friends, to the WORLD, to keep us all safe. Getting the vaccine would be my small contribution. Not everyday do I get to help save the word. 🌎
Thinking about it that way, helped me feel empowered, and thankful that I had the opportunity to receive the vaccine. It would be selfish of me to wait. Next, I had to help calm my anxiety.
I did research
Both vaccines are made from messenger RNA. This mRNA is a generic blueprint given to your body. You can imagine it works kind of like giving a mugshot to your immune system of the bad guy (COVID-19) it needs to protect your body from. Once your immune system recognizes that bad guy, if it interacts with it later, your immune system is prepared. Even though it’s genetic material, the vaccine itself does not alter your genes, and turn you into the next *insert you preferred genetically modified superhero here*. However, it does encourage your body to pump some new security codes into your system.
The beauty of using the mRNA method is that your body does the work to protect itself. Because of that, the vaccine can be produced much faster than other methods. For example, the flu shot viruses have to be grown in chicken eggs, then harvested, then deactivated, then purified. That all takes 6 months before ever getting close to you. And that method had been refined after decades of experience.
Moderna had an efficacy of 94.5% and Pfizer of 90% during phase 3 trials. ** Those efficacy numbers are outstanding. Comparing back to the flu shot, it usually only reduces risk about 60% (but there are many strands of flu we are working against).
Day of the vaccine 💉 (Friday)
Appointment time was 08:30. It was 31 farenheit and there were not enough portable heaters. Dallas, my medical alert dog, was shivering as if to shake the frost off his body. My co-worker was ahead of me in line. Just being able to wave goofily at each other was surprisingly comforting.
The line moved smoothly, and much more quickly than I was anticipating.My husband stayed with me in the line outside until I got inside with only 4 people ahead of me. The makeshift space was entered through an emergency exit door. A line of chair backs was used as a check in space. The normal check in window had make shift protection on the openings. I let out an audible giggle as to how awkward, but oddly efficient everything was.
The nurse giving the injection was so skilled that I didn’t feel the needle, only the pressure of of the fluid entering my body. I had to reassure nurse Crystal that I had my epi pen, rescue med, and inhaler. She emphasized the importance of staying the full 15 minutes for monitoring.
I noticed others leaving early. But it is important to be honest with reporting all symptoms and drugs (prescribed or otherwise) so healthcare providers can make suggestions to keep you safe. I stayed the full 15; I felt fine.
My goal for the day was to push fluids and monitor myself. A few hours later my arm started to feel sore, but no more than a flu shot does.
By the end of the night my arm was so sore it’s range of motion was at 80% it’s usual. The only irritation around the injection site was from the band-aid (and it wasn’t even a cool power ranger one 😞).
Day after the vaccine (Saturday)
I woke up feeling like I had climbed Everest the day before. My body was sore, my joints ached, there was no using my right arm. Sitting hurt, so I would stand. Standing hurt, so I would walk. Walking took so much effort that I would get tired and have to sit right back down. Fatigue is not a stranger to me, but that was different.
I didn’t want to use any pain reliever, especially a fever reducer. My body was working hard to help me against COVID-19, and there was no way I was going to interrupt that process by introducing other chemicals.
However, suffering wasn’t a requirement. Out came the CBD balm. If we could have drawn a bath of it, I would have dipped myself in. Every joint and muscle, and even the tender right arm was covered.
CBD is magic. By the end of the day I was able to do dishes with little pain (darn, didn’t have an excuse to avoid them anymore). We have no dishwashing machine, so I was able to scrub with vigor thanks to the CBD. 💪
Day 2 after vaccine (Sunday)
Woke up after quite a restful night. The tenderness in the vaccine arm was negligible; about as much as a flu shot. The fatigue I experienced was easily cared by having a relaxed, no chore Sunday. Overall, a darn good day even by my epilepsy standpoint!
Day 3 after vaccine (Monday)
My neuro nurse anticipated this would be the last day of any extra soreness or fatigue. Soreness only was noticed when squeezing my arm. There was some fatigue that seemed more than my usual. Being back at work in addition to the fatigue caused an increase in my seizure activity. Feeling so well the day before caused me to disregard the possibility of needing to take it easy. However, I considered myself in the clear from the possibility of detrimental side effects.
Now it is just a matter of waiting the 28 days for the booster!
Summary/ Recommendations
Consult with your physician about your health condition when considering the vaccine.
Having a specified seizure action plan helped with managing anxiety as well as preparing for the physical.
Keep in mind your reasons for getting the injection.
Extreme soreness was able to be controlled by topical pain creme.
No behavior/medication change besides extra intake of fluids.
Increased fatigue can be treated/managed in the same ways as you do with your normal amount of fatigue.
If working during the recovery days, allow yourself extra breaks, and don’t forget to monitor yourself.
Are you planning on getting vaccinated? Any questions on the experience that you would like to ask? Let us know in the comments.
As a reminder, I am not a certified medical professional. The above is not intended to be used in place of professional medical advice. You should always consult with your healthcare physician prior to making any medical decisions.
The original idea for this post was to create a short list of Halloween movies that were safe for a person with photosensitive epilepsy. Photosensitive epilepsy is when sudden light/contrast changes trigger a seizure.
What this post quickly turned into was a list of movies that were not safe for photosensitivity. Learn more about photosensitivity and seizures from the Epilepsy Foundation.
The spooky season comes with dangers when you live with epilepsy or migraines triggered by flashing lights. Strobe lights seem to be a staple in haunted houses. Lightening flashes are a common scary ambiance in Halloween movies.
I watched each of these movies (I did so safely) to find these flashes. There were many of the classic movies that you wouldn’t expect that were disqualified from being photosensitive friendly.
Although the movies below do contain some amount of flashing, watching the movie in a bright space lessens the likelihood of triggering a seizure or migraine. This is because the contrast difference is lessened. The 🌞 indicates that the movie is most likely safe for daylight viewing.
Disclaimer: Not all photosensitivity is the same. You can use the below list as a reference if you are unsure of the photosensitivity safety. Please use caution when watching ANY movie if you are triggered by light changes.
Family Friendly Halloween Movies:
Nightmare Before Christmas
Hocus Pocus 🌞
Adams Family (1991)
Edward Scissor-Hands 🌞
Beetlejuice
Halloween Classics:
Halloween
Poltergeist
Ghostbusters
Evil Dead 2: Dead by Dawn
Modern Halloween Movies:
Underworld
Silent Hill
Tucker and Dale vs Evil 🌞
My goal is to watch almost every horror, thriller, slasher, and monster movie, in western culture, to grow this list.
There are movies that you can enjoy in the dark that do not have flashes. But that will be a (much smaller) list for another time.
What is your favorite Halloween movie? Is there a movie listed above, that surprises you that it is not photosensitive safe?
My chronic illness causes constant fatigue. My body is battling itself from the inside, and it’s hard to deal with anything on the outside. Housework falls by the wayside; it is just too hard to make things happen. Everyday I got to see things getting piled up larger and larger, waiting for the time that I felt good enough to do something about it. And that time rarely comes.
One day I took a good long look at my house, and my life, and finally decided I needed to do something drastic to help me. What I ended up looking in to, was minimalism. At first I thought, “how ridiculous? I love the majority of my items in my home, I will never be able to part with them. I should just give up now.”
As I read, I found minimalism didn’t mean living with nothing, it meant living with less.
Research shows brain fatigue increases when it has to process more in an environment. Brain fatigue means body fatigue. Studies have found that clutter in a space raises cortisol levels. Cortisol is your stress hormone. Therefore clutter hits you with a double whammy, to your physical and mental health.
The more I thought about it, the more it started to look good for my epileptic brain. With things being simplified and reduced in my house, my brain would not need to use as much energy (because it really does not have any to spare).
So, this is where we started.
Chalk board reminder if our Keep It Conditions.
Set some guidelines to help you out with the decision making process of what to keep, donate, or trash. Actually write these down, so that you have something visual to reference. Our guidelines are:
Have I used this in the last year? Will I use it in the upcoming year?
Can it be replaced for less than or equal to $20? Can it be borrowed?
Would I purchase this item again?
Is this living out the purpose for which it was created? Or have I found a better use for this and it is currently doing its job?
Am I keeping it out of guilt?
if I had the opportunity, would I sell it in a yard sale?
My largest collection that sparks joy is my wardrobe. I love my clothing. I do not buy an item of clothing that will not create at least three complete outfits with the clothing items that I currently have. I am truly a curator. 💁🏽♀️
However, I do hold onto my items of clothing for decades. I’m not kidding, I have T-shirts that I wore in the 5th grade. (And yes they do still fit; I went through a very early growth spurt, and then never grew again.)
So some items of clothing are clearly made for a younger person, and I am holding on to them purely for selfish nostalgia. That is where those questions come in. “Could someone else use or love it more?”
Two bags of clothes ready for donation next to Al the avocado plant.
Most definitely, yes.
I feel better knowing that I’ve donated them and somebody else will wear and love them the way they should be loved.
The majority of my newer wardrobe has been left untouched, but a lot of other items have been donated, easing the stress of both me and the bar that holds my clothes!
Onion method is not called The Onion method because it’s stinky and makes you cry, it is because you focus on your house layer by layer. Start with the large items, or the items that you can easily identify that do not belong in that space.
Here are some items I found in my living room.
Left to right: Hair tie, Jack-o’-lantern necklace, mailbox key, kangaroo pencil, camera lense cover.
It is September, so that Halloween necklace has been out for almost a year. How embarrassing! 🤦🏽♀️ But it has a home in the Halloween decoration box in storage. The extra camera cover belongs in the camera bag, the pencil belongs in the office, the hair tie belongs in the bathroom, and the mailbox key belongs in the key bowl. And done! That’s five things already cleaned out of my living space! Small victory, but it feels pretty good.
Starting in the space where the smallest amount of work, makes the most visually impactful change, can be a great kickstarter. We donated a lot of clothes, but we don’t get to admire the closet like the clear space in the living room.
It is the room we hang out in the most as a family. Moving those 5 items made a clear open space that I can admire while the family spends time together. And this can be now more quality time because none of us are distracted by the mess that we are surrounded by.
The 15 minute rule. Limit yourself to 15 minutes at a time. Set a timer, and work consistently for that 15 minutes. If that is all you can manage for that day, it is absolutely fine, you did an amazing job.
Metallic Sandtimer – Not 15 mins.
In the beginning, that’s all I could manage. My body would get fatigued, or I just felt that I could not bring myself to do any more work. But I quickly found myself able to extend that 15 minutes. And not only physically I was able to, but I actually wanted to!
I’m not too sure if simplifying will help me as drastically as others. Regardless, I am sure that the benefits, no matter how small, would be worthwhile.
This is where we will start. I’ll give updates about this journey. I hope you are as excited as we, to find where this experiment brings us!
What is the level of clutter in your house? Do you have any tips on how to simplify that you find helpful? Let us know if you try any of the methods above, and how well it worked for you!
Managing social expectations can be difficult when you have a chronic illness. Social expectations of what your illness “should” be like, can be greatly influenced by things seen on TV and movies. Unfortunately, many illnesses and disabilities get portrayed in just one way. And that depiction can sometimes be the only experience of an illness or disability someone has in their life.
You may have seen commercials for new medications that have actors portraying your chronic illness. Sometimes it is hard to see a person in the commercial doing all these things that you cannot. People in those commercials always seem to have a positive attitude about their condition.
You might see things on social media of people accomplishing milestones that you’re worried you may never get to. It is okay to feel frustrated. It is okay to feel hurt by other people’s experiences. No two people, and no two journeys are alike.
What can we do to help when we are feeling like that?
Recognize how strong you are. Say to yourself “this is really hard, but I am working on it.” You are here in this moment, and you know what that means? You have been brave enough to not give up or give in to your disability or chronic illness.
Allow yourself to feel frustration, disappointment, anger, etc. Don’t let somebody tell you that your emotions are bad or invalid. You are going to feel, however you are going to feel. Practice not pushing the emotion away, or pushing the emotion down. But also practice not clinging to that emotion or holding grudges. I say practice, because this will take time to get better at accomplishing.
Focus on what you know to be true in this moment. Try to avoid thinking only in extremes. For example “I never will” or “it is wrong that” or “it is not fair that” are parts of extreme thinking. Remind yourself of the good you have right now. Read more about stating your one good thing here.
Finish by thinking of pleasant things that you can do today that makes you feel good. And acknowledge how amazing and wonderful it is that you can do that. There are many activities that can bring joy that don’t require much effort, but can bring much joy. Can’t think of anything off hand? The following list contains Covid-19 restriction friendly suggestions.
Singing (regardless of talent level)
Talking with a friend (on the phone or in person)
Day dreaming (stick to good thoughts)
Gaming (board or video)
Playing with pets (this is good for them too)
Reading (books or blogs – like this one!)
Napping (one of my favorites)
Learning something new (language, hobby, musical instrument)
Here is my example of using the above technique: I see people who are days, months, and years seizure-free via social media. Right now in my life I’m lucky to go a couple of hours seizure-free. Therefore, I can feel quite discouraged and jealous at times.
But, the fact that I can help bring awareness about the different experiences people have with epilepsy, and other chronic illnesses makes me feel proud. Helping more of the general public be aware that not all epilepsy looks the same, is very rewarding.
My hope is, with more education, social expectations will be more realistic. My truth in this moment is: I know I have the capability of reaching towards that goal, with this blog. It is hard, but I am working on it.
Having a chronic illness comes with a lot of unpredictability. You may not know what the future may hold. But together we can work on bringing more joy and comfort in the now.
What are some frustrations you experience with your, or a loved ones chronic illness? Do you think you will try what was discussed above in those moments? Feel free to share in the comments.
Epil(epsy)ogue 
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