A man texted me on Instagram and said what illness do you have? I answered, he actually said to me “are you proud of my illness” You make it come across that way, I was upset, shocked but the text got me thinking after blocking him is How could the title of a illness make someone believe you are proud of your illness. The saddest thing is we really are not proud, a lot of aspects can be embarrassing, I want to be healthy, help others and if you don’t hear me crying through your text, what you need to understand, we are alone, we cry alone, we don’t want to bother anyone, and if you cry, your weak or family reads you are suicidal. I do cry but not to others, I pray God will help me find a cure, I know there is a purpose, but unlike other diseases, we don’t have ribbons, pins, t shirts, parades, fundraisers, Everything when you tell your illness to someone, you get the sad face or the look of your going to die. or everyone has a magic pill or shake that will cure you, I even wrote to John of God with my illness and my photo. I received a bottle of something, but I couldn’t take something that there isn’t a list of what is in it. I know people who have had invisible surgeries? they will buy every supplement that are promised to cure them. I look at it is If it cures everything, why aren’t disease being cured. Living with a disease that has taken your life away from joy, working, family, friends, financially cost so much on copays and hospital stays, then there are the mistakes which I don’t believe in suing but I believe If the error was done unintentionally than I need to let then know so they can learn and also write a heart felt letter letting them know. That I am not a disease, I am a mother, daughter, sister, friend and its for these reasons I am letting them know. I am human, not a chart or Medical record number. Not to put anyone down, to educate them. Never once to this day have I gotten a phone call or letter of apology even knowing I had a good case to sue them. So when someone asks me am I proud of my illness, I can say no, Never and wouldn’t wish this is on anyone. Sometimes I wonder what I did or why me, then I realize Why not me! What is my lesson, what is my purpose and that is why I help so many others. My dream Is a cure that may not ever come, but I still would like to live my life and pursue my photography so I can donate to non profits. But with that comes something you can go in he hills with. Like a ATV not even knew, just safe and runs. but on disability you don’t have extra money for stuff, I cut my own hair, do my own nails, clean my own house, 1 room a day or I can’t walk the next day. So when people say you look healthy you must be recovery, It’s the mask. The mask of feeling well, It takes me a couple hours to get ready for occasion and then I pay for days. There are people out there far sicker than I but I don’t have a cure, that takes the hope away. And as simple as a ATV or lunch on a outside patio seems so little to others, they are dreams for others who just want to live with the simple things to make our life a little easier, more pleasant with more enjoyment, not a trip t Disney land, or Europe just the simple things.
I have always worked in my life, Proud of being being able to raise my kids and live our life the way we did, we hadn’t gone to Disney land, or drove a fancy car, but we had a home, home made food, nothing out of a box, the boys were in Soccer, Karate, Swimming, cub scouts, and boy scouts, Our house was the neighborhood house, I loved having all the kids at our house, although our house wasn’t 3000 square feet it was home and nice home, and although we couldn’t really vacation , we camped in the back yard and used a tent trailer in the front yard and made up vacations in our imagination, food and house decorations to match the vacation, I worked in the hair business for a while before realizing it wasn’t coming from my heart, so I started working in the medical field, first in the operating room then Labor and delivery then 15 years at a Dr’s office and I loved my job, it didn’t feel like work to me, I was doing what I was meant to do. I believed in everything The Dr I worked for did, I really believed his first interest was the patients. My loyalty will always be there. But my illness took that away from me, how devastating that was to me to give up what I believe was meant to do. But with employers it comes down to, you become a liability, there afraid you are going to make mistakes, although there wasn’t any made. The comments said behind your back about working with a employee with a disability was heart crushing to me, Co workers I thought that were my friends, my family and I came home from work the last 6 months crying every day because of how I was being treated by a particular employee at my job, she made me feel so bad about myself and I was allowing her to make me sicker and sicker and my husband said there is no job worth this. I thought about it and he was right, I was loyal for 15 years and my intention was to retire when the Doctor did, but this particular employee did everything she could to make my life a living hell. The Doctor didn’t want to hear it, so I went to a disability attorney and found out my rights and found out I could sue due to her behavior, her discriminating words not only against me but applicants for jobs, but I didn’t want to hurt the Doctor or the practice or keep the negativity in my life. She was toxic and broken and I couldn’t let her treat me that way anymore, so I left. It was the best decision I ever made. Although I am still sick I don’t have that added stress and toxicity in my life. My job was for the patients, and that’s why they liked me and felt safe with me, they knew I would take care of them. But most patients are on my facebook page and keep in contact. When I run into patients they hug me and tell me how much they miss me and the office isn’t the same with out me. So I know I made a impact and now my heart is to help others with invisible illnesses. So i am still doing my hearts work just in a different way. My support group is awesome and when we share our tears and we share our stories, I know I am on the right road. Kelly
My mind isn’t what it used to be.
It’s a weird thing for a 28-year-old to have to say, but unfortunately it’s true.
There was a time when productivity was a part of me and I didn’t have to make difficult decisions on how to spend my energy. There was a time when I had energy…
But no longer. Chronic illness changed all the rules. I’m not even playing the same game anymore, but some things remain the same. I still have dreams and aspirations. I still want to be successful and be happy and loved. I can still manage to get work done on my own schedule.
It’s just all so much harder now because I suffer from Meniere’s disease, and Meniere’s, like so many other chronic illnesses, causes a kind of cognitive impairment called brain fog.
In a lot of ways, brain fog is hard to describe, and experiences can vary from one illness to another. But for me, brain fog is a frustrating clouding of consciousness. It makes it hard for me to focus and concentrate, and as a consequence my work and productivity suffers. It also affects my memory. I often forget why I walk into rooms, and I frequently have trouble recalling words.
It is incredibly pervasive problem, too. The number of chronic health conditions that cause brain fog is simply staggering. From autoimmune disorders, Fibromyalgia, Diabetes, Chronic Fatigue Syndrome, and Chronic Pain to Vestibular Disorders, Chronic Migraine, Crohn’s Disease, and Depression, just to name a few. It’s a problem that affects literally hundreds of millions of people around the world.
If you are used to be being a productive person, brain fog will take the wind from your sails. The fuzzy feeling of fatigue and lack of motivation that many people experience can make it nearly impossible to accomplish anything. It can be hard to participate in daily life when your mental energy levels are constantly depleted.
Productivity and illness are two words that clearly don’t belong together, but fortunately, over the years I have found helpful strategies for improving my productivity and getting more work done.
Write it all down:
The first rule of brain fog is to write everything down. In the past, I’ve written about ways to improve your memory. It’s an incredibly helpful practice but also quite difficult. A simpler solution is to just write everything down.
I keep stacks of index cards, pads of Post-it notes, and small notepads all over my house. It can be hard to organize all of the scraps of paper, but I don’t have to worry anymore about forgetting an idea, an appointment, or meeting my responsibilities.
I generally stick to several simple note taking strategies. For random ideas, and general note taking, I use 3”x5” index cards. I find that the small size keeps my notes concise and to the point. It also makes it easy to carry around.
I also use Post-It notes, though primarily for reminders. If there is something I need to remember, I write it down on a 3”x3” post it note and stick it to the place where I will need to remember something specific. Another good trick I’ve found is to stick post-it notes to the back of my cell phone. I do this with anything important that I need to remember in the near future. I keep a pad of post-it notes next to my bed for this exact reason. If I think of something while brushing my teeth or falling asleep, I immediately write it down and stick it to the back of my cellphone to make sure I remember it, and remember to read it in the morning.
Keep a fixed routine:
One of the most powerful productivity tricks I’ve found is to keep a routine. When a routine becomes a habit through repetition, the brain uses less energy to accomplish task. Through a process known as “chunking”, the brain turns a complex routine into a single chunk of information, allowing us to execute a complicated set of actions on auto pilot. It’s a way for our brains to conserve energy, and it pervades our lives. According to a paper published in 2006 by a Duke University researcher, up to 40% of our daily actions are not conscious decisions we make, but automatically executed habits.
For someone with a chronic illness, you can use this to your advantage. If you follow a fixed daily routine, over time you will have more and more mental energy available to put toward the work you need to do. It will allow you to be more productive.
For me personally, I tend to go to sleep, wake up, exercise, meditate, and eat, at the same times every day. I also have a fixed morning routine. By the time I need to get to work and be productive, I usually haven’t had to make any decisions that day or waste any energy.
Manage priorities and keep an I-did-it list instead of a to-do list:
I sometimes use to-do lists, but on a daily basis, I try to focus more on priority management. On most days I tend to have a lot of relatively unimportant tasks to accomplish, and one or two that are priorities. But because I almost never have the energy to finish everything on my to-do lists, it’s incredibly important for me to know which tasks to focus on first. As long as I can address one priority, I can feel like I’ve accomplished something important for the day.
Also, instead of keeping a to-do list, it’s often far more rewarding to keep an I-did-it list. I find a list of my accomplishments to be a greater motivator then an unfinished to-do list. The latter causes anxiety while the former inspires hope and momentum.
Find your most productive time of day:
You may not realize it, but everyone has a time of day when they are the most productive. For me, it’s after I finish my morning routine, roughly an hour after I wake up. If I have something important to do, I make sure to work on it during this time. On my most challenging days, when my brain fog and fatigue are at their worst, I can often at least get something simple done during this time. My energy has no guarantees, but I am able to get the most important things done by leveraging my most productive time of day. Take time to experiment and find out which time of the day you have the most energy and are most productive.
Get rid of distractions:
This may seem like a simple suggestion, but in reality it’s quite hard to put into practice. With the rise of social media, mobile devices, and web based entertainment, we face more distractions than ever before. For someone with a chronic illness, these distractions can rob us of the little bit of productivity we have left.
When you need to be productive, it takes time and energy to get into the mental space needed to complete a task. Every time you get distracted, you have to start over and re-engage with whatever you’re working on. It’s not always obvious though, and until I started writing, I didn’t realize how much time I was wasting.
For example, while writing this article, I’ve received five emails, two text messages, three phone calls, and four Facebook notifications. And every single one has disrupted my mental flow. Each time, it takes me a while to get back into the zone and sometimes, I never do.
Like many of you, I am addicted to my phone. But when I need to be productive I try to force myself to turn it off. I close my web browser and listen to ambient music to drown out any distracting background noise. It makes a huge difference.
I also try to keep an organized workspace. It may not be as problematic as a smart phone, but a cluttered working environment can be a distraction and a source of stress. I find that when I keep my office clean and organized, I am able to focus better and be more productive.
Stop working and go for a walk:
Sometimes the best way to be productive is to stop working and go for a walk. I get easily overwhelmed when I have a lot of work to do and I’m feeling brain fogged and fatigued. Sometimes I try to just push through it, but that usually makes me feel worse.
When the frustration starts to build, I always go for a walk. There’s something about walking that just seems to stimulate the mind. I find it boosts my creativity, and works incredibly well to reduce brain fog.
Walking is also all that’s needed for your brain to start releasing endorphins, your body’s “feel good” neurochemicals. Ever hear someone refer to a “runner’s high”? They’re talking about endorphins. The release of endorphins causes your stress levels to go down and your feeling of satisfaction to go up. If you are feeling brain fogged, the endorphins released during a nice long walk will help you feel better.
All of these strategies have helped me cope with brain fog and improve my productivity, but I still have not been able to eliminate brain fog from my life, try as I might. I am, however, often able to mitigate it in the moment, and if I can be productive, get my work done, and meet my responsibilities when it matters most, then the end result is ultimately the same.
You can learn to cope with your brain fog, too. No matter what chronic illness or condition you face, you can learn take back your daily life, one minute of focus at a time.
Written by Mind over Menieres.
This is my new site!!!! Thank you to Paul M Van dort for building this new site that is also responsive. This means you can see this site on I phones, I pads, laptops and computers. This will make it easier for everyone to access my page. The Invisible me, Invisible you is a site is dedicated to people with invisible illnesses, this could be Autoimmune disease, Vestibular disorders, or any illness you can’t see on the outside. Hopefully patients with invisible illnesses can get some understanding from family, friends, co-worker and Doctor’s understand what the effects of what invisible illnesses has on patients with these diseases both mentally and physically.
The intent of this site is to help others through sharing information. Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.