As the list of my illnesses continue to grow, I question the motivation behind all of these test, I am a very compliant patient, but there comes time when you say Enough is Enough, After having the smart pill test and diagnosed with gastroporesis. My pain continues to hurt so bad on my rib cage due to the gastritis and esophagitis and the pain is radiating through my ribs so bad I thought I was having a heart attack. So I go get checked. No Heart attack thank god, But the ER Doctor said to me you keep coming in and we can’t help you why isn’t anybody getting down to the bottom of this. So with that being said, still no food, continuous heart burn and rib pain and I had to even take pain meds which I don’t do. I tried heating pads, everything, So the GI Doctor says he wants to order two more invasive tests, So I asked why am I doing another radioactive test on my digest system when the first test was fine and I would have to go off my meds again the only thing allowing me to even eat a little shake, then have a tube down my nose into my stomach to measure the ph balance. Going off my meds again. I thought about it and I decided no more tests, every test makes me worse. So If Stanford can’t go by the past tests then I will attempt the test but I have had enough. I know Dr’s offices make money off of test being done in their offices and I know that’s a huge influence, but, it’s making me worse. I called my ENT and told him I am going to come see him to check in to be compliant but no hearing tests. Going into the little box for the testing causes so much pressure in my head it throws my vertigo beyond and ear pain. Enough is Enough and for each patient that will be different. For me 10 years and it’s enough, I continue my meds but cut some in half for less effects. I won’t tell the Dr’s because then you are non compliant but I am extremely sensitive, so I have to do what is right for me. If your feeling that same feeling, Stand up for yourself, listen to your gut and follow it. Just remember you can always reschedule the test if you change your mind or increase your meds to original prescription, you have to listen to your self.
When You Wake Up Disappointed About Your Illness Every Morning
I’ve been awake since 3 a.m. I only went to bed at 12:30 a.m., so that definitely does not add up to enough sleep! This is a fairly normal occurrence for me, especially at the moment, and it’s so frustrating! I woke up because of the pain in my ribs and abdomen, and I couldn’t fall asleep because of it, too…
Waking up because of pain is the shittiest way to wake up and start the day… A friend recently fell off her bike and explained that she had been woken up the night before by the pain in her leg. She told me that it was such a horrible way to be woken up, and I explained that this is how I’m woken up most nights or mornings… And if I’m not waking up because of the pain, I feel pain as soon as I have woken up in the morning.
Waking up and being in pain straight away is beyond depressing and demoralizing, but I’d always pick this one over being woken up by the pain. Both options are so tough, lonely and exhausting, though. They also feel indescribable. Words somehow just don’t do being-in-constant-severe-pain justice at all.
For a while last year I noticed that I kept waking up in the morning hoping things might be different. This was more because of emotional stuff that was happening at the time, and for the months beforehand, but the experience was very similar to what I’m experiencing now, except at the moment I’m feeling this hope-for-difference because of the extreme pain I’m experiencing. Last year I was desperately struggling with grief and anxiety (as well as other chronic illness related things!). Each morning I would wake, hoping things would be different, and each morning I felt so sad, heartbrokenly disappointed, and desperately frustrated that it wasn’t… It was exactly the same over and over again, each day, every day, for ages!
When I prolapsed two discs in my back in 2013, I remember having this same thing: Six months into being completely bed-bound, I was waking up every day with a heartbreaking hope for difference, and feeling completely crushed and exhausted every morning that it wasn’t. Every time I was still waking up to the same slog of navigating intense loneliness and the constant challenge of somehow getting what I needed each day when I could barely get out of bed.
Something eventually shifted, as something always does, but it wasn’t that the symptoms completely eased (the grief/angst still rear their head every day, and my back still gives me troubles), it was just that something else — something more intense — took over dominating my experience.
I was struggling with severe concussion earlier this year, which devastated me for about four months. It didn’t get better, it’s still very present every day (I discovered I have a brain injury!), but it’s just that this pain in my ribs/abdomen developed and took over as being the pain and symptom that was shouting the loudest… When my ribs/abdomen pain is raging, I don’t feel my severe joint pain (or much else) because I can’t — I’m buckled up, struggling to breathe or move beneath the agony. But when my ribs/abdomen pain reduces from a nine or 10 to a seven, I feel my joint pain again…
Ugh. Explaining exactly what is happening, and how many symptoms I’m navigating and have navigated for ages now, always leaves me feeling angry, frustrated, overwhelmed, exhausted, scared, helpless, and really f*cking heartbroken and sad… Living with chronic illness is so, so, hard. So hard. I often can’t believe how much I’m dealing with, so I struggle to trust other people would be able to comprehend it, too.
Surely someone can’t have that many things going on and still be trying to exist?! Is that what my head says… I immediately know that isn’t true, but I often talk myself into feeling suicidal because I’m like, surely I can’t keep — and shouldn’t keep! — fighting when I’m experiencing all of this? Surely I should just want to give up and stop fighting to live…? I end up feeling embarrassed that I continue to fight despite my experience, that I haven’t just gotten the hint yet… I feel like an idiot that I’m still trying so hard to live when actually things are just so damn hard in this body of mine.
But that is all talk from my inner critic — it isn’t truth, it just feels like truth a lot. Life is difficult — it is beautiful but it is f*cking difficult, too. And we all have differing levels and types of difficulty that we experience, and in so, so, many ways, my life is nowhere near as hard as some peoples’ in the world.
I want to continue to reframe this hard time I give myself about something that is actually beautiful — the way I continue to fight despite everything I experience, and the way these experiences actually fuel my experience. It shapes my writing, my activism, the projects I begin… Friends often point out that it’s amazing how I create so much from an experience that actually could bring people to the floor and leave them there…
Our heads, our inner critics, find material for criticism in the most beautiful and inspiring parts of ourselves. The characteristics that actually need and deserve celebration become an area that I pound myself with criticism and comparison about.
But both, especially the latter, just blind us to our experience, our truth: what is actually happening and how we are dealing with it. We get blinded to the fact that we are brilliant. Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it’s really f*cking difficult.
Take time to spot the ways you deal with your experience thaGet help for someone else
So today was a day I was not going to live in my limitations, I wasn’t going to let my illness control my day, I didn’t want to be found or tell anyone where I was at, only those that live with a chronic illness want to have what little control left, so before that Kelly your are idiot for doing this, I had to break free if only for a moment. I went for a walk along the river, Steep hill, didn’t bring my cell phone, just wanted to be with me and hoping for a zebra, owl or something to come by. the park looked empty but found out it wasn’t, but I only came across one person that scared the living bejeezus out of me because I couldn’t hear him. Going down the river bank wasn’t fun but getting back was impossible, I decided to take advantage of being stuck and I couldn’t even get a duck to wake up for a photo op. I did find a caterpillar. Yippie, Not even a fish dancing, or a bear doing the hula. but Thank god for tree branches so I could get up, not it was how to I get back to my car, I am a path I don’t know anything about but I followed the train which lead me back to the park. My point is, although a stupid move, I needed to break free for a couple hours, fall in the mud and be lost from civilization. Of course, I am paying now, but here are some photos from my breath of fresh air
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When did you attend Earl Wooster High School?
As I went through this Holiday Season and now paying the price, I thought a lot about what lines did I cross or what did I do to much of that has wiped me out so much.
I have a family tradition with a collection of nutcrackers and the thought of getting them out of the closet, setting up only to take them down just made me tired just thinking of it. So this year they didn’t come out.
I didn’t bake cookies or candy this year, just did the basics, I purchased my gifts mostly online and early and wrapped up as they came in, so I wasn’t stressed, but I have to admit I did not add bows or spend a lot of time to decorate them.
I was adjusting to the cold weather and storms we were getting, which for those of us with chronic illness the weather changes can cause us to change in how we feel. We hadn’t gotten snow for several years, this year we are getting the snow and having really cold weather. Just going out side or a breeze from opening the door the air would burn the inside of my ears. Going into any store caused more drop attacks and that for me I have to recover from. More than normal, I think because the stores were busier, the sounds louder, the lines longer for me it was like the longest mission ever just to go to the store.
We had several deaths in our family that had caused stress, tears, heartbreak, one after another, The devastation of loosing people and the sympathy I shared with the family’s for them I didn’t realize how much this was taking out of me.
The excitement of seeing a family relative that I hadn’t seen in years. Due to family drama, only to be disappointed in the reunion because this person hadn’t changed and to see this person cause pain to other family members was more than I could handle. The emotional evening ended up in yelling, and arguing and fighting and I ended up in the bathroom, throwing up from my Vertigo and crying a lot of the evening, I tried to figure out why I was so upset, I am use to having my feelings hurt or seeing behavior I am not happy about, but I think when your sick, it takes so much energy to even go to a event, bring food, gifts ect and to have turmoil just devastated me.
I always believe people come in your life for a reason and leave for a reason, but I always have hope that the people that you know longer have a relationship will change, maybe realize how their attitude hurts people, You find out they are going through a hard time, so you happen to run into this person and reconnect and offer support only to receive rude words, negative comments and when I was leaving I thought to myself, Why do you, meaning myself always want to believe that people have changed or learned from loosing others that maybe her forward approach and hurtful words cause people to not want to be around her. But yet your there offering help despite the words and tone being received.
I really have been struggling with the all that happened through out the holidays and don’t care to repeat this past season again, but I also have learned I need to protect myself from the negativity of others, the hatred and rude people that really only care about themselves and hurt others to build themselves to a higher level.
When I was healthy, I could handle these situations, stand up for myself and walk away, now I feel I just don’t have the energy to protect myself anymore, so I have to make the decision to just stay out of these peoples life, even if they are having a hard time, I can’t believe people have changed, If I walked away from the relationship once there was a reason, and self centered people don’t change so I have to keep my fence up and protect myself.
So this holiday season has taught the new me, Keep my priorities clear, my boundaries clear and my fence up to the negative people that may or may not remain in my life. Protect my heart, because with a chronic illness, it seems to get hurt easier now and my heart to help is in the same place but I can’t have the gut punches any longer.
Another lesson learned.
Happy Sunday, Yesterday we had our meeting with a guest speaker Dr Gentry. She is a Clinical Health Psychologist. Her specialty is Chronic pain, insomnia, depression and chronic illness with out having to use medications. We were so delighted to have her and She has agreed to come back and talk again along with sending me information we can use for Veda. For me the main points I got out of the meeting was her bed side manner, Very easy to talk with and so down to earth but besides that she does work with other physicians with mutual patients so they receive all around care. Dr Gentry understood our frustration on the care we receive and how building a relationship is so important for each one of us, The question is how? Dr Gentry admitted she hadn’t worked with many Vestibular patients, but mainly it’s because the Vestibular patients are not being asked how they are handeling their illness so they could be referred to someone who can actually teach them coping skills and not everyone is the same what works for one person maybe not work for another. But again she doesn’t give out medical prescriptions, she works with patients with meditation Acceptance and commitment therapy (ACT) which is accepting who you have become and letting go of the person you were. Someone who lays in bed daily and has a pitty party for themselves is not going to have a positive future, but if you commit to making the best out of your situation, that’s the first battle. I know for us Dizzy people, some days are better than others, Believe I know some days it can’t be done but there is always another day. Learning your limitations, learning how to plan your schedule to make the most out of your day. Dr Gentry also recommended journaling, It could be about how your feeling, it could be to release anger, there are painting journals where people draw or paint pictures to express their feelings, there is also music therapy, talking therapy. A cognitive behavior therapy (CBT) for those who don’t know what that means it’s how your brain functions, remembers, how our brain sends messages to the rest of our bodies to function and how are sensory system works, so for me personally, my cognitive thinking is on the decline, I was tested by a actual Dr that does this for a living. In Reno his name is Ted Young, This information lets the Dr know where your thought process is failing if it is or what part of your brain is stronger than others, but they do not treat patients only test. So this information would be helpful for someone like Dr Gentry so she know what areas need the most work. She also works on Mindfulness, which is changing your thought process, not in a strange way, but a positive way of thinking so you have less pain and find ways to enjoy your life again and hopefully get you off as much medication as possible. She will be emailing me some information that hopefully we can use for our vetibular issues, She does accept insurance and has cash pay prices. She will be contacting us to come back now that she know what our group is about. So all the way around it was a great meeting and I feel like we got some great new information. and looking forward for more to come. Any comments would be appreciated for those who attended the class.
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.