Chronic Illness

How to Find Balance While Living With Chronic Illness

In 2009 I started to learn about blogging and got to spend some time learning the ropes from Kelly McCausey. That came to a crashing halt in 2010 when I began to experience catastrophic neurological symptoms which led to my diagnosis of cervical dystonia. It would be almost a year before I could sit in front of a computer again. Fast forward a few years to 2013.

Beginning to feel better and become more productive, I read a few time management books and resolved that 2014 would be the year that I blogged intentionally and started a virtual assistant business. I planned to devote daily time to gentle exercise like yoga and walking. I started a Whole30. So many plans.

Then January began and I got sick with one of those nameless viral plagues that makes you feel like crap all over. I had it for a week. It went a way for a few days, came back and didn’t go away. Sore throat, extreme fatigue, muscle aches, GI woes. I told my allergist who is also an immunologist what was going on and he ordered a battery of tests.

A few days after my labs I learned that I had mononucleosis in addition to a sputtering thyroid. At 51, I was a late bloomer.

The familiar fog of depression began to envelope me. I spent a lot of time in bed worrying about a lot of things. I began to feel suffocated, overwhelmed and out of control.

In 2014 when I originally published this post I wrote the following…

I’m not feeling awful all the time. The nausea and brain fog seem to set in during the afternoon so I can still find moments to write and read the Bible and some learning materials. I just have to redeem the good moments to read constructively, find time for some movement (yoga is good for lymph glands) and cook so that I have what I need available during those times I don’t have the energy to cook.

I know this will (hopefully) pass. I’ve heard stories about mono taking as long as eight months to go away. That’s pretty depressing to think about. I’m doing every natural health protocol I can find and I’m thinking about visiting a twelve step meeting. But no matter what I can or can’t do, I can redeem the time with intentional living, even when I’m housebound and stuck in bed.

Later that year, the worst of it did pass and it didn’t take eight months. However, I do still struggle with fatigue and since then seem to be a little more prone to strep and occasional flares. Illness of any type makes my chronic illness symptoms worse but I’m still pushing forward. I’ve started blogging regularly and have some clients.

And to make things even more interesting, in 2018 I got diagnosed with ulcerative colitis. More spoons to count and one more health condition to manage.

The hard lesson I’ve had to learn over the past few years is how to balance setting goals with my physical reality. I’ve learned that there are still lots of things that I can do, but I have to be careful about over doing it. For me, finding balance while living with chronic illness and the chronic pain that goes with it starts with making spiritual disciplines a priority. That means daily devotions, yoga, mindful living practices and continuous self examination.

5 Tips to Finding Balance Living With Chronic Illness

*Technology – If my symptoms are flaring, there are lots of tasks that I can do from my laptop or tablet while resting in bed. It’s a great feeling to feel like I’m doing something productive instead of vegetating on Facebook or Netflix (nothing wrong with that once in awhile though!)

*Time management – At my stage in life, I should have figured this out by now but I’m still learning. I tend to bite off more than I can chew and get really disorganized which is stressful. Having a bullet journal helps me to see what my priorities are and what is realistic for my energy level on any given day.

*Keep expectations simple – I often feel like I’m on the sidelines watching other families do things that we can’t. But I am learning to find joy in the simplicity of my life and being home much of the time. I keep an eye out for serendipities – little things that bring me joy no matter how I’m feeling like being with my pets and finding quiet things to do with the kids that don’t tax me.

*Communication – Talk to your family and friends about the limitations that you’re living with and don’t be afraid to ask for help.

*Small daily steps – It might be just 5 or 10 minutes a day of intentional movement or household tasks, but it’s still something. I just have to be faithful to take whatever small steps I can and it will take me in the direction I want to go.

Finally, when I catch myself falling into self pity, it’s good to remember that God uses the fires and trials of my life to refine me according to His good purpose. And He promises that the end of the story is a good one.

“In fact, I’m quite certain that before God can ever bless a woman — and use her to impact many — He uses the hammer, the file, and the furnace to do a holy work.” — Tricia Goyer and Ocieanna Fleiss, Love Finds You in Glacier Bay, Alaska

More Coping Strategies for Living With Chronic Illness

As you probably know if you are a chronic pain sufferer, the impact of chronic illness on individuals varies from person to person. But no matter what, don’t feel hopeless about your situation. There are simple lifestyle changes you can make that will help ease the burden, reduce the severity and frequency of the pain, and help you to deal with it better on a regular basis.

Try keeping a journal. It isn’t just fluff..one of the most important reasons to do this is to find your chronic pain triggers. For many people, the pain isn’t merely random, but is often triggered by something. You can start journaling every time you experience pain, and note what you were doing or eating before then. You might find that certain foods trigger your IBD pain, or that your fiber acts up in certain weather conditions or while standing for too long. Eventually, knowing your triggers can help you reduce them, which then helps with the
long-term pain management.

Learn how to manage stress. Stress has a strong link with chronic pain, making it worse and keeping you from finding relief from the pain. If you are under a lot of stress, whether financial, personal or work stress, it’s much harder to get control over the pain on a daily basis.

What you eat or drink can also have a major impact on your chronic pain level. If your pain is related to inflammation, you need to cut back on fried foods, red meat, and refined carbs, and go for fruits, vegetables, nuts, and whole grains. Eliminate alcohol and smoking, and drink more water. These are healthy changes not only for your weight management and general wellness, but for reducing your chronic pain as well.

Exercising outdoors helps to reduce chronic pain. This helps distract your mind from the pain, allowing you to enjoy the sunshine and fresh air, be a little more social, and take in your surroundings. While on a scenic hike, you’ll become absorbed in your surroundings and your pain may subside, even if just for a moment. This can make a big difference for anyone with chronic pain.

Relaxing your body and mind is important for managing chronic pain on a daily basis. Find things to help you unwind at the end of a long day or de-stress, whether that means taking a bath, enjoying a movie with your family, or getting out an adult coloring
book.

Living With Chronic Illness Blogs

I’m really thankful to be living in a day and age where it’s easy to connect with other people living life with chronic illness. While it can never completely replace meeting up in person, I do feel like I have a place to turn to when I’m struggling and for day to day support (and even laughs!)

Here’s some chronic illness blogs for you to check out:

Brainless Blogger – A blog is about chronic illness, chronic pain, and invisible disability awareness. The author lives with chronic migraines, Fibromyalgia, asthma, hypothyroidism, depression, and hypermobility syndrome.

The Health Sessions – Written by a psychologist living with chronic illness, she shows you how to create lasting health habits and best tips on coping with chronic illness.

Inflamed and Untamed – Written by a fellow IBD patient, this blog talks about the good, the bad, the ugly and sometimes funny things about living with chronic illness.

Chronic Illness Bloggers will help to connect you to the chronic illness community. Blogging helps many of us to cope as well as being an important mental and creative outlet.

Sunshine and Spoons. I was really happy to find this blog because we’re both special needs moms who live with chronic illness. That’s the beauty of the Internet to me right here – I probably would never found someone else like me locally.

How do you find balance while living with chronic illness?

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5 Simple Ways to Recover From Brain Fog

My immune system has been compromised for years with frequent colds and various viral plagues. And I was recently diagnosed with IBD. When this happens, brain fog can really be a struggle. When I feel like this, I have no motivation at all to anything that requires mental focus. And not only that, it makes my chronic illness and pain worse. I’m learning to improve the lag time that I usually struggle with and I wanted to share my 5 simple tips to recover from brain fog, illness or any time you might be struggling with focus.

Disclaimer: I’m not a medical professional, just a recovering exhausted mom. Please discuss any concerning symptoms with your health care professional.

Brain Fog Symptoms

Brain fog can be caused by a number of things including chronic illness, medications, stress, lack of sleep, diet and hormonal changes. The biggest symptom for most people is difficulty thinking, focusing or struggling to construct a sentence. While many seniors are concerned about brain fog, many young or overwhelmed moms also struggle with it.

5 Ways to Get Rid of Brain Fog

Move Around

The longer you stay in bed, the harder it can be to get moving again. No matter how awful you’re feeling, take some gentle and simple movement breaks, even if it’s just to go and sit outside. Moving around gets your lymph glads and your brain to come back to life. Gentle yoga is great for this.

Stay Hydrated

As much as I’ve heard this advice throughout my life, often the first thing that goes when I get sick is adequate fluid intake. Not drinking will slow down recovery and make you feel even worse. So fill up a big cup with your favorite flavored water combination and some crushed ice. You’ll notice an immediate difference in your overall wellness.

Eat Well

I really struggle with nausea and loss of appetite at times. When this happens, I have no motivation to eat well and days will go by where I eat mainly soft foods and few fruits or vegetables. Not only that, but I struggle with sugar cravings too. Following a simple low carb diet and eliminating sugar and processed food will help you feel better.

Rest More

In our hyper, driven society rest is a foreign concept to many women, and with good reason – we just don’t have the time to rest! But we’ve got to carve out that essential time to rest. This is when we give our bodies a chance to heal and rejuvenate. If we keep running on empty, sooner or later we’ll pay the price, possibly with a compromised autoimmune system, adrenal fatigue or other health concerns.

Just Pick One Task to Start

When you’re coming back after illness, it can be really overwhelming to look around the house at the mess and your running to do list. First, get out your journal. Get back into gear by focusing on one simple task and get that done. Then move on to the next task. Choose wisely and then put your hair in a scrunchy, drink some coffee and blast your music…whatever gets you going and get it done! Doing this will usually bring your focus right back and after getting through a few tasks you’ll find that you can start to multitask if the need arises.

As you get better, aim to start your day with a little planning. List your must-do items in a journal and do them one at a time. Multi-tasking may make you feel industrious but research shows again and again that we can focus better and stay more productive by tackling one task at a time.

Review and Refocus

When you find yourself struggling with staying focused, stop and take a minute to review what you’re doing. Why are you struggling? Are you still feeling sick or struggling with distraction? Once you know what’s causing you to lose focus, you can address it. That might mean that have to rethink your task list or try to break things down into manageable chunks. Remember, it’s perfectly okay to admit defeat and cutting yourself some slack if you’re feeling awful. In that case, do what you can, but don’t beat yourself up for not being at the top of your game.

Use Planners for Brain Fog

I find that writing things down is one of the best ways to stay focused. Some people prefer apps, but there’s something about physically taking to pen and paper that helps to cement things in my tired brain. I’ve designed some planners for Amazon that are a great way to reduce mental stress.

Food Supplements for Brain Fog

You may also want to investigate supplements for brain fog. The most important thing you can do nutritionally is to eat a healthy whole foods diet. Do your research to find what works best for you, such as the Paleo, Keto or Vegetarian diets. We’re all different and will have different responses. Listen to your body! However, supplementation may be necessary as well to improve the gut brain connection.

Vitamin D

“Other than thyroid hormones, vitamin D is the only other hormone every cell of your body needs to thrive. Low levels of vitamin D have been linked to everything such as increased depression and suicide rates, decreased memory, and cases of Alzheimer’s.”

—Dr. Will Cole, instructor of The Elimination Diet

Omega-3s

“In a study appearing in the American Journal of Clinical Medicine, 176 adults with normal memory function and generally poor dietary intakes of DHA were placed on a DHA supplement for six months. Their memory function was evaluated at the beginning of the trial, and at its conclusion. In both males and females, there was a marked increase in memory function comparing those that were given DHA versus those who received a placebo pill.

—Dr. Perlmutter, author of Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain for Life

B Vitamins

If you have IBD, you may have malabsorption issues that could put you at risk for developing deficiencies that may be difficult to reverse through diet alone. Not only that, but alcohol and certain medications like antidepressants and heartburn medicines can increase your need for B vitamins.

Adding a good Vitamin B complex can help to reduce brain fog and improve your mood very quickly, but it can take several months to reverse a deficiency.

Circumin

“Tumeric helps boost working memory and attention in healthy older adults, helps treat depression. Note, it’s not recommended for women who are pregnant.”

—Dr. Elizabeth Lombardo, author of Better Than Perfect: 7 Strategies To Crush Your Inner Critic and Create a Life You Love

Essential Oils for Brain Fog

Rosemary Essential Oil. A fast and simple way to boost your focus is to inhale some high quality Rosemary essential oil. The terpene levels in rosemary essential oil easily pass the blood brain barrier for fast results. It’s thought that memory can improve up to 75% just by inhaling Rosemary.

Other essential oils you might want to consider for improved mental focus are lavender, citrus, peppermint, frankincense and blends especially formulated for brain health like this one:

Recovering from Brain Fog

Finally, if you’ve been too ill to shower for a day or two (or more!) treat yourself to a hot shower with some nice soap and a sugar scrub. Even if you have to go right back to bed, you’ll feel so much better.

You may not be as productive as you would on a day when you’re feeling awesome, but these tips will help you to move back toward productivity mode. You might even find that once you’ve taken that hardest first step, you’ll get your groove back and really find your focus again.

It’s a slow process. Stick with your new habits and you’ll start to feel better and better with each passing week.

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Chronic Illness Diary Vol 1

Welcome to The Chronic Illness Diary. This is a new weekly post that I’m starting at Chronic Mom Life where I write about all the little things that are happening (or not!) in my day to day life. Things like my self care routines, what I’m reading or listening to, what I’m doing in the kitchen and more. As a blogger I’ve found myself getting caught up in the blogging should and to-dos and I’ve forgotten the joy of writing for its own sake!

My Chronic Life

I never imagined the day would come when I could say that I don’t think about the dystonia constantly. It’s still there of course – when I get stressed out the tremor comes back and my trapezius likes to “talk” to me at times but I’m no where near as incapacitated as I was when this started in 2010. My other conditions – ulcerative colitis and chronic fatigue – are reasonably stable. I’m not going for words like cure or even remission here, just quality of life so I can be here for my family for as long as I can. I have asthma too but tend to forget I have it now. I always have the inhaler in my backpack, just in case!

The SCD Diet

I didn’t mark the date when I switched over to the SCD diet after trying GAPS and Keto, but I think it’s been about six months now. As I mentioned above, my ulcerative colitis symptoms are pretty stable. I am taking the Apriso, because I need it. I’ve actually gained some of the weight I lost back and I need to watch the medjool dates and other SCD treats that I’ve grown to love.

Self Care

I’ve been doing some hard thinking about the amount of time I spend on social media – specifically scrolling my feed! As someone who had some degree of ADD to begin with, this habit of constant scrolling has been destroying my concentration, my already limited organizational skills and increasing my stress levels. But I’m a blogger and virtual assistant – I do have to be on it! So one small habit that I’ve started this week is to eliminate the morning feed scroll. Just a few days into eliminating that habit I already feel more centered and less stressed. This can only help my writing, I hope! I was waiting around at an appointment yesterday and instead of scrolling my feed as I usually do, I read about half a chapter of a book that was on my Kindle. I felt more productive and less agitated.

What I’m Reading

Talking about reading, I have countless contemplative books on my Kindle that I never seem to have to time to read. Right now, I’m reading Flee, Be Silent, Pray by Ed Cyzewski. I’m really loving it because it affirms what I’ve privately been thinking about what he calls “anxious Christians” for years now as I look for a winsome and quiet way to share and practice my faith. In my never ending quest to calm down my hyper nervous system, monkey mind and anxiety, I’ve become a student of contemplative living which for my includes daily yoga, centering prayer and praying the divine offices every day.

My Journaling Practice

This is another habit that went by the wayside because of my social media addiction and it’s one of the most important things that I should be doing! I pulled out a blank journal that was on my shelf and I simply started writing after breakfast. On the days when brain fog is a problem (really, when isn’t brain fog a problem!) I read some scripture or some prose. I just ordered one of Mary Oliver’s books for this purpose. I’m embarrassed to say that I never heard of her until her recent passing, and I noticed that a lot of recovery accounts that I follow were sharing her works.

In the Kitchen

I’m rethinking the way I cook and meal prep now. With two of my adult children out of the house, I don’t need to cook in quantity as I did before. My family does not follow the SCD so sometimes keeping everyone happy is a struggle. I try to focus on meat and vegetables which I can eat and give them rice or potatoes on the side. I do have to keep things prepped so that I have a quick protein or snack that I can grab when I need to. That’s it for this week!

Recommended Books

This blog uses Amazon affiliate links.

17 Chronic Illness Blogs You Should Follow

Living with chronic illness is tough, debilitating and extremely isolating at times. But one of the perks of living in the 21st century is that people living with chronic illness are better connected and more informed than ever…because we have each other! Chronic illness blogs offer the opportunity to encourage and educate others who are on the some path.

Social community has become a real lifeline to me as I struggle to navigate the complexities of living with cervical dystonia and ulcerative colitis. I don’t even want to think about where I’d be without it!

People living with chronic illness often struggle with feeling like we’re stuck on the sidelines while everybody else is living a picture perfect life (on social media, anyway.) It gets discouraging. For us, blogging is a way to use our own unique life story and perspective to connect with others who are struggling. It also functions as a much needed creative outlet.

One thing that most people with chronic illness share, regardless of their diagnosis are mental health struggles. Anxiety and depression are very common. Unfortunately this is an area that is not addressed by most medical doctors and we’re left on our own to muddle through it. Checking in with other chronic illness bloggers is a great way to find some emotional connection with others who are struggling.

So brew some coffee, tea (or chicken stock!) curl up in a comfy place and give these blogs a look.

Chronic Illness Blogs

A Balanced Belly is a fantastic resource for anyone living with IBD (Crohn’s or Ulcerative Colitis) as well as other digestive conditions such as celiac disease.

Bladder-Help.com was created by Layla, a Nutritional Therapist who specializes in chronic bladder issues. If you struggle with UTIs or interstitial cystitis, you’ll definitely want to follow this blog!

A Chronic Voice offers encouragement to chronic illness suffers who are struggling with depression as well as caregivers and medical researchers and doctors.

Tea and Cake for the Soul – I’m all about blogs that offer encouragement and self care tips no matter what the diagnosis. This blog covers a wide range of subjects that will help you practically and mentally.

Brainless Blogger (I know the feeling!) shares about her experience living with migraines, fibromyalgia, asthma, hypothyroidism, depression and hypermobility syndrome. Like many of us, blogging and writing are very therapeutic for her.

Laura Chamberlain is a professional journalist who had to give up her career when she became chronically ill. She writes to share her experience living with a plethora of conditions including fibromyalgia, hypothyroidism, Raynaud’s syndrome and ME/CFS.

My Brain Lesion and Me writes about the complexities of living with a long standing brain stem lesion and spastic paraparesis. Her writing is beautiful and encouraging to anyone living with any type of chronic illness.

A Journey Through the Fog was diagnosed with fibromyalgia, osteoporosis, IBS, anxiety and panic attacks, depression, migraines and insomnia. She writes authentically about the mental health struggles that many of us face.

Blogs for Parenting With Chronic Illness

Living with chronic illness is challenging enough. But parenting with chronic illness? That’s a whole new level of parenting style. In fact, it stands alone in that regard! As a mom with chronic illness, parenting means constantly pacing my self, watching my stress levels, creating healthy meals for myself and my kids, advocating for my special needs kids, keeping track of their appointments and therapies finding time for exercise plus playing Uber driver.

Whew! I’m not even sure how I do it. But checking in with other chronic illness parents helps me to feel like I’m not alone. We encourage and learn from one another.

Chronic Mom lets people living with chronic illness know that they’re not alone in their struggles. Parenting with chronic illness presents its own unique set of struggles as we still have to be mom no matter how crappy we’re feeling.

The Spoonie Mummy also writes about parenting with chronic illnesses. Like me, she lives with IBD (Crohn’s disease) as well as juvenile rheumatoid arthritis, ostopenia, anxiety, iritis and high blood pressure.

Being Fibro Mom – everything you need to know about parenting with fibromyalgia, aka “Fibro parenting”.

Chronic Eileen writes: perspective of life changed drastically when I became chronically ill. Before Arthritis my schedule was filled with work, friends, underground heavy metal concerts and the music scene, drinking beer, to suddenly doctor appointments, treatment, isolation, medications and juggling single motherhood with my new very confusing disabilities both physically and mentally.”

Crazy Creole Mommy shares my IBD diagnosis. Brooke Abbot is now a dedicated advocate & WAHM (Work At Home Mom) who lives without a colon, and still battles her Inflammatory Bowel Disease & Arthritis daily. Armed with a mommy bag and a new lease on life, she shares her stories, tears, triumphs and quick tips with other mommies with autoimmune diseases.

IBD Moms – coming very soon but as an IBD Mom myself, I’m thrilled to find this support!

Lights Camera Crohns – Natalie (Sparacio) Hayden, 35, is a former TV news anchor living in St. Louis. Her mission in life is to be an advocate for those battling inflammatory bowel disease and to show that a chronic illness doesn’t have to dull your sparkle. Natalie was diagnosed with Crohn’s disease in July 2005.

Tripping Through Treacle – parent of two and lover of yoga, crochet, cocktails and interiors… oh, and also lives with Multiple Sclerosis (MS).

The Zebra Mom writes about motherhood with chronic illness (Ehlers Danlos Syndrome/EDS) and like me, parents children with special needs.

Yoga for Chronic Fatigue

Chronic fatigue syndrome is an exhausting condition characterized by debilitating fatigue that doesn’t go away with rest. I’ve been living with chronic fatigue for a number of years, probably before I was officially diagnosed with mononucleosis three years ago. Yoga is an excellent way to manage chronic fatigue symptoms.

What are the signs and symptoms of chronic fatigue?

My symptoms were debilitating fatigue, a nagging sore throat, glassy eyes, chills and an overall feeling of unwellness.

chronic and debilitating exhaustion
brain fog
muscle weakness
slowed reflexes
moodiness
headaches
post-exertional malaise
depression, stress and anxiety

How long does chronic fatigue syndrome last?

To be diagnosed as chronic fatigue syndrome, symptoms must persist for at least six months. But for some people, symptoms can be off and on for years. I can always tell when I’m flaring because the sore throat and glassy eyes come back.

Can chronic fatigue syndrome be cured?

There is no cure for chronic fatigue syndrome, but some symptoms can be treated or managed. Always discuss your concerns and treatment options with your doctor.

Whole Foods diet. A natural, low carb diet is an essential part of good health. You might want to look at the Paleo, GAPS and SCD diets.

Vitamin supplements. If you live with a chronic condition, it’s essential to get your labs run. You might have nutritional deficiencies that are either contributing to your condition or even making things worse.

Lifestyle changes. Reduce or cut out caffeine and alcohol. Reduce stress. Gentle movement. Lose weight, if necessary. Get solid rest every night. Every little thing you do will boost your overall health and your body’s healing. Alternative therapies such as meditation, gentle exercise, or yoga can be very beneficial and help to relieve symptoms such as depression.

Does chronic fatigue weaken the immune system?

If you have Epstein Barr you should know that it has been associated with autoimmune diseases such as multiple sclerosis and systemic lupus erythematosus and malignancies including Hodgkin’s disease, B cell lymphomas and nasopharyngeal carcinoma.

Yoga For Chronic Fatigue

If you’re struggling with chronic fatigue, the last thing you probably want to do right now is exercise. One major symptom of chronic fatigue symptom is post-exertional malaise, which is a debilitating reaction to even small amounts of exercise. (I had this going on for years before I realized what it was!) Symptoms can range to increased fatigue, pain and flu like symptoms.

Many people with chronic illness are turning towards yoga to help cope. Yoga is an ancient practice combining mindfulness meditation and movement which have a deep and long lasting effect on the mind and body.

I was given a review copy of Yoga for Chronic Fatigue Syndrome by Kayla Kurin. I found this book to be a very empowering read and confirmed much of what I’ve learned along the way living with chronic illness since 2010. Keeping my nervous system calm is key to managing my diagnoses of cervical dystonia, ulcerative colitis and chronic fatigue.

I’ve struggled with disordered eating for most of my life and got into the habit of using strenuous exercise as a “purge” for when I’d overdone it. But as I got into my 30’s I began to notice that on the days when I had a hard workout, I would get bad cold symptoms within a few hours.

Even after I knew what was going on, I’d often still try to push too hard and would pay the price..which meant I couldn’t work out again for a week or more. I’ve really struggled with doing “only” gentle yoga but I’m in a better place of acceptance about it.

If you live with chronic fatigue syndrome, it’s essential to have restorative practices in your life so that your body can rest and heal. It’s an act of lovingkindness to yourself. Ms. Kurin discusses mindfulness as a tool for healing. As a Christian, I’ve often heard about mindfulness being frowned upon but when I took some time to learn about it myself, I found that it was as simple as keeping your head where your feet are…being fully present with yourself and where you are.

Yoga for Chronic Fatigue is a fantastic read for anyone living with chronic fatigue, or any other chronic illness for that matter. While it’s not promoting a cure, it will empower you to make the healthiest lifestyle choice that you can which will give you a mental boost and restore your energy over time.

Yoga for Chronic Fatigue is divided into seven sections:

Understanding Chronic Fatigue
The Yogic View of Chronic Fatigue
Mindfulness as a Tool for Healing
Using the Breath as an Energy Source
Yoga poses to Help Reduce Fatigue
Building Daily Self Care Rituals
Living Mindfully.

I especially appreciated the chapter about building daily self care rituals, which is another essential part of recovery for anyone living with chronic fatigue or other chronic illness. Your lifestyle must support your healing. This includes practices such as creating a morning routine, adequate sleep and intentional living. Having set routines helps to reduce decision fatigue which is an important part of learning to pace yourself. If you’re always stressed out, you’re only sending your recovery backwards.

Yoga helps to regulate breathing and increases metabolism, aids in weight loss, relieves stress and reduces depression by bringing in positive energy via meditation and can also help in pain relief and management.

If you’re living with chronic fatigue or any form of chronic illness, Yoga for Chronic Fatigue is a must read!

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What It’s Like to Have Chronic Fatigue Syndrome Now

Since I began a mindfulness and breath practice my overall attitude to every part of my life has improved and the anxiety that I struggled with for years has been greatly diminished. I’m not cured by any means. I started feeling unwell a few months ago and sure enough, the EBV numbers were elevated. I have good and bad days with IBD and dystonia which themselves are debilitating and exhausting.

Life is going to happen, but I have a mind, body and spirit practice that I can always fall back on.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” – Maya Angelou, Letters to My Daughter

Special Considerations

If you live with ME/CVS, please consult with a knowledgeable professional as some yoga postures may push the limits of your balance and strength.

Awakening

I’m joining up with the other chronic illness bloggers at A Chronic Voice for February Prompts. It’s a monthly get together for anyone living with chronic illness. Sometimes I get bogged down with the business of blogging, and this is a great way to just freestyle it and listen to others with different points of view.

If you’d like to join us, there’s still time. Click here to submit your own entry and see what others are up to!

Adjusting

I’m coming up on the one year anniversary of my ulcerative colitis diagnosis. Adjusting is putting it mildly. It’s been more of a complete overhaul, to say the least. I’ve had to radically change my eating habits. As a special needs mom, I had some familiarity with grain free protocols such as the GAPS, Keto and SCD diets. I went through each of these and finally settled on the SCD Diet, which I’ve been doing for about six months. I try not to think about my favorites such as New York pizza, Jewish deli treats, Cuban bread, cafe con leche, chocolate…I should probably stop here.

Hoping

Hope for me at the moment looks like being optimistic that the SCD Diet will keep me from bigger meds or big surgeries. Many people report results like this, but there’s no guarantee of course. I’m also hoping that we can figure out a good transition situation for my 19 yo daughter who has a severe learning disability but falls right through the cracks when we try to find supports and services.

Surviving

The last ten years have been about surviving, beginning with the cervical dystonia diagnosis in 2010 quickly followed by my son’s cardiac emergency where he had to get a pacemaker almost 10 years after his open heart surgery. I’ve become a student of mind, body and spirit practices in order to keep my nervous system calm.

Befriending

Last year we finished homeschooling. I devoted over 20 years of my life to it and I look back with mixed emotions on it all. In the beginning it was fun, kind of radical thing to do with my kids. But the last ten years I struggled with chronic illness, not being able to keep up with the homeschool Joneses and watching my younger daughter struggle to fit in. I’m kind of done and moving on to the next stage of life. I’m working towards finding a tribe where I can truly be my authentic self…possibly even in person and not just virtually? A girl can dream.

Awakening

I’ve learned to expand my cooking skills (hello almond flour!) and am learning other ways to process my emotions rather than stuffing them with food, which I’d done for years. Yoga and meditation are teaching me to clear my head and stay in the present. I’m getting older and am starting to feel that if I want to make time to do certain things, the time is now.

Overall, I do feel reasonably positive about the future. Just have to remember to live it one day at a time!

10 Symptoms of Stress You Should Know

Stress really isn’t a bad thing. It’s actually a natural process designed to protect or at the very least prepare us for imminent danger. Stress is what helps us run from threats or push through chaotic situations. But it’s important to recognize the symptoms of stress because they can sneak up on you without your being awareness of it. We get used to that feeling of constantly being over worked and over stimulated.

In small doses and for a short time, stress is a good thing. It becomes a problem when we are totally stressed out and it’s constant. Chronic stress is what causes things like adrenal fatigue, high blood pressure, belly fat and heart disease.

If you have a constant wired, tense feeling, more than likely you are stressed out.

Many times we don’t even realize just how stressed out we are until something major happens and our body then forces us to slow down. Don’t let it get that far. Learn to recognize the early signs you are stressed out. Learn to control the stress, work on reducing the stressful situation, and most importantly make time to rest and relax so you can recover from the unavoidable stress and pressure life throws at you.

Our anxiety does not come from thinking about the future, but from wanting to control it.” – Khalil Gibran

10 Symptoms of Stress

A general feeling of anxiety and feeling unwell.
Trouble sleeping.
Lack of concentration and focus.
Mindless eating and snacking throughout the day. (Sweet and salty foods are particularly appealing!)
Needing a nightly glass of wine or beer to unwind.
Feeling overwhelmed.
Hair loss
Compromised immunity.
Depression and loneliness.
GI symptoms including nausea, dizziness, and diarrhea.

The problem is that these symptoms of being stressed can stress us out even more. We may respond by pushing harder, which makes us feel even worse.

What Happens To Your Body When You’re Stressed?

Stress may cause emotional distress such as depression and anxiety. Not only that, but you may start having physical issues in your body. You may even notice certain issues that are more long-term problems from ongoing stress in your life. Here are some ways that stress affects your entire body and a few relaxation techniques to help you manage stress more effectively.

Ongoing Tension and Pain

One of the most common ways that stress can affect your entire body is by causing tension. This tension may show up in your muscles, neck, and other mysterious aches and pains. The tension can lead to chronic pain as well. This pain can be in the form of severe headaches or body aches that require medication to heal. If you have ongoing stress and tension, you may find yourself experiencing issues related to inflammation and even serious body issues like Fibromyalgia.

Eating Disorders

When some people are stressed they may experience eating issues that lead to severe eating disorders. You may find yourself binge eating. Or you might even find yourself experiencing so much stress that you can’t keep food down. This can lead to an emotional and mental connection that drives you towards anorexia or other related issues. Learning to live more mindfully and and developing strategies to reduce anxiety is one of the best ways to manage disordered eatings. (If disordered eating is making your life unmanageable, please seek professional help.)

Heart Issues

Another thing to consider is stress can affect your heart over time. Unchecked stress can lead to high blood pressure. When this happens you can experience shortness of breath and possibly even stroke or heart attack if it is ongoing and happens often. If your blood pressure or stress are out of control, it’s essential that you seek professional help right away in addition to stress management techniques.

You will find that as you remove stress from your daily life, you will start to find the long term effects will reduce. To remove them completely, you will need to focus on each aspect and work to make sure that your stress does not get to a level that the long term issues rise again. Regular exercise routine, meditation, and healthy eating can all help with this.

Stress Management Techniques

The only way to break the cycle of being stressed out all the time is to address THE problem… the stress.

We can do this by making a conscious effort to cut (or reduce) stress, learning simple relaxation techniques, and learning to give ourselves the time and rest that we need to recover.

Limit caffeine.
Don’t drink to relieve stress. Alcohol will likely make things worse.
Increase physical activity
Try meditation
Talk to a friend
Keep a journal or try adult coloring
Improve your time management
Know when to say no.
Take a day trip out in nature.
Join my 30 day stress reduction challenge for easy to implement, actionable tips to reduce stress in your life!

In this life, we’re all going to experience stress. Unchecked it can contribute to poor health.We can’t always control everything. But we can control how we respond to it.

You can’t always control what goes on outside, but you can always control what goes on inside.” – Wayne Dyer

How to Survive the Holidays with a Chronic Illness

This was my first Christmas holiday since my ulcerative colitis diagnosis in March of 2018. I’m following a strict grain free protocol, so many of the traditional foods that I’ve enjoyed for decades were completely off limits. Sometimes it got to me, but I would remind myself of the importance of what I was doing in hopes of minimizing the need for heavier drugs and to keep on being positive.

A couple of nights before Christmas we went to a local Christmas stroll. We’ve been attending this event on and off for around 15 years. While I was there, I reflected on last year’s walk, which was when my first IBD symptoms began. And 2010, the year of my cervical dystonia when I did the walk through blinding pain but I was determined to be there. The only problem I had this year was constantly having to constantly pull up my yoga pants which kept trying to slide down.

I congratulated myself on being able to enjoy the walk with no symptoms flaring…until I got home. As I took off my coat I felt a pain down my arm. Within a couple of hours, it was down past my elbow and I had trouble maneuvering myself into bed. With the timing of the weekend before Christmas, I knew I wouldn’t get into the doctor right away so I consulted Dr. Google which seemed to confirm what I suspected…something to do with the rotator cuff, either an impingement or a tear.

I couldn’t believe it. I had to hand off kitchen and wrapping responsibilities to my husband. Had to miss Christmas services because I could barely move my arm.

A Simple Christmas is Okay

The moral of the story? By keeping things simple, I didn’t set myself up for a letdown when things happened. I’d been very intentional about meditating on Advent this year and continuing my yoga practice. Cooking and baking were kept to a minimum anyway with my restrictions. With only one child still in school, the end of the year events have slowed down.

It’s been a simple holiday season without the stress, without going crazy with decorations, events, and gifts. By scaling back and focusing on the more spiritual side of this holiday, I found joy in the season and didn’t have too much depression as I’m prone to.

Surviving the Holidays with a Chronic Illness

Was it a perfect Christmas? No. I got a little down watching my family get dressed and go to church (I insisted they go!) But when it came down to it, I simply used my down time to offer thanks to God for his provision and to pray for families who were going through tough times. And that’s reality. Some Christmas seasons will be more challenging than others. Maybe there’s another diagnosis. Maybe there was a death in the family. Maybe you lost your job right before Christmas. Maybe the car broke down at the most inopportune time.

Life happens to all of us and while there are thousands of things that could happen that could potentially ruin Christmas, how you react to any of them is up to you. Some years, you simply make the best of things and move forward.

Here’s a few posts from some other chronic illness bloggers who share tips on surviving the holidays with a chronic illness.

Tom Seaman (who shares my dystonia diagnosis) offers helpful stress management tips for chronic illness warriors. Despite the business of the holidays, we’ve got to make time to attend to body, mind and spirit.

Elizabeth Sirrell at Despite Pain writes movingly about trying to continue to enjoy life despite living with chronic pain.

Sam Moss at Medical Musings writes about living with several chronic conditions, coming to terms with it all and having a Merry “Chronic Christmas.”

She writes:

If you are feeling a little melancholy…….you are not alone.

I will have a lovely Christmas but it will not necessarily be a season of constant joy. It will have moments of delight, moments of extreme fatigue, moments of excruciating pain and then moments of relaxation and rest.

This is the reality for those of us with chronic illness.

Merry Christmas & Happy Holidays to all my readers!

XO, Marya

How Sobriety Helps Me Cope With IBD and Mental Health

It was just about a year ago – November 2017 – that I noticed a nagging pain in my lower right side when I was doing yoga. I have a long history of pelvic pain and adhesions so I tried not to think too much about it but I had a gut feeling (see what I did there!) that something was very wrong.

The holiday season was under way and I didn’t have time for this so I swept it under the rug. A few weeks later while walking a Christmas stroll with my daughter I was almost doubled over with horrible GI pain. The buildings on the route were old and none of them had an open bathroom. I was a little panicked but I finally found a restroom. It turned out be “only” gas.

The pain and inflammation were picking up and I couldn’t even lay on my side. It was making yoga miserable. I called the gastro and made an appointment for January. I’ve had a long history of IBS and urgency but prior colonoscopies didn’t pick up anything. I was used to the urgency to poop hitting me about 10 or 15 minutes after I entered a store and walking around, and always thought that was just my normal.

I got a referral for a colonoscopy, and being me, I procrastinated about it until March. The weekend before the procedure I took my kids out. We had amazing NY pizza. I was thinking about how great it was that we finally had good pizza in Florida and how good life was.

I didn’t know that was going to be the last time I had pizza.

The big day arrived. When I woke up, the gastro told me that I had ulcerative colitis. I started out with a bang – it was pancolitis, meaning the ENTIRE colon was affected and it was, in fact “oozing.” We left and stopped to get something to eat on the way home. While we were at the table I started getting really nauseous and then I passed out cold in front of my husband. When I woke up I heard him crying and the paramedics were around me. I got whisked to our local ER where I spent a good portion of the day. I could barely stand up and needed help to get to the bathroom. When I finally was able to get there, I discovered that I had soiled myself while I had passed out. The prep didn’t go too well for some reason. I didn’t have clean clothes to change into except for the hospital gown.

That was my entry into the world of IBD at age 55.

The SCD Diet

I was pretty stunned at this turn of events but jumped into action right away. As a special needs mom I was familiar with GAPS, SCD and grain free diets so I sourced some things and changed my diet immediately. Initially I had to take prednisone for a couple of weeks, then tried balsalazide for awhile. To my distress, the incontinence was an ongoing problem so I stopped it. After a few months I switched to 100% SCD and tried not to take any more meds for a few months but after distressing, labor like pains and continual bleeding it was very apparent that I still needed to be on them. I had a sample of Apriso from the doctor and that plus the SCD diet seems to have greatly reduced my symptoms.

IBD and Mental Health

After the diagnosis, I think I jumped into everything so fast that it took me months to really start to notice the effects on my mental health. I really like to think I’m a badass but I was scared. I already had a neurological condition called cervical dystonia, (read more here) I was a special needs mom and now this?

I didn’t know what I was going to do when I had to take my 17 yo son (who has Down syndrome) out and the urgency hit. He can be pretty stubborn and is beginning to balk at coming into the woman’s bathroom with me, though I do try to find family bathrooms as much as possible. I could just see myself having an accident while caregiving because I obviously I have to tend to his safety first.

Life changed on a dime for me like it has for so many others. With the risk of accidents and other unpredictable and at times noisy GI symptoms, it seems easier to just not leave the house. When I go out shopping, I always have to case where I am so that I know where the bathroom hits. From the time I feel that first cramp, I have maybe 5 minutes to find a bathroom. And if I have my stubborn son with me, that’s pretty challenging.

I’ve read a lot of personal stories from others with IBD. The surgeries scare me. My kids need me, who will take care of them if I wind up in the hospital for extensive surgery? After my second ER visit this year my son said he was worried about me. It broke my heart.

The stomach pains are awful. The depression is unpredictable and hits me hard. I’m sure anyone who knows me well can tell when it happens because the light just goes out of my eyes. My first Thanksgiving just passed. I made some grain free sides for myself but they just didn’t taste the same. The reality of the Christmas season without the traditional foods that I loved started to get overwhelming.

How Sobriety Helps Me Cope

Many people who have IBD are in a dark place. It’s an overwhelming set of circumstances and mental health help is NOT offered by medical professionals.

Likewise, people in recovery struggle with some form of depression and anxiety. Getting a life altering diagnosis like IBD is traumatic and mind blowing. I’m really grateful to be sober and don’t miss my old life at all. But I do struggle with all that’s on my plate. The longer you stay sober the more things you find that you’re powerless over. To that end, I’ve developed a self care tool box over the years that serves me well since I can’t get to a lot of meetings because of my health issues and family responsibilities.

I’ve found a lot of similarities in coming to terms with IBD and my early days in sobriety.

Being all in. In early sobriety a friend said that whatever I would do for a drink or a drug, I had to apply to recovery. That means to go to any lengths to stay sober. The same applies to IBD for me and staying on such a restrictive protocol. It’s hard as hell, but for the sake of my family and myself I’m willing to go to any lengths that I have to do keep this beast under control. Early in recovery, I used to worry about how I was going to handle potential drinking situations…like what was I going to do New Years Eve or when I got married (yes, I really thought about this!) Now it’s simply a non issue. I don’t drink. It’s who I am. I have to learn and practice the very same principles with managing my IBD and it’s going to take some time..I still get down about what I can’t eat any more.

Daily meditation and quiet time. I have devotions before I check social media or do anything else. It keeps my head straight.

Yoga has become an important recovery modality. So much so that I just signed up for a 200 hour teacher training. I’m not entirely sure of what I’m going to do with it yet, but because of my ongoing mental health issues, I feel like I need to take things to a deeper level. Kind of like the rehab experience that I never had.

Movement. Anxiety cripples me. And makes my illnesses worse. Sometimes it’s just THERE and won’t go away. Doing cardio (Leslie Sansone works great for me) is a great way to burn it off.

Social connections. A lot of this takes place online now. And that’s okay for where I am today. I used to think that virtual connections didn’t really count but right now, they’re vital. I found a couple of good groups for IBD, dystonia and being a sober mom. There’s a big chronic illness and recovery community on Instagram. Knowing other people go through what I do is a relief. Helping someone else out is how I carry the message and get out of my own head.

Doing something creative. I keep this very simple. I like stickers and use them in my planner and journal. I also like to cook (which is a good thing because I have to cook every. single. thing. from scratch now to stay compliant on the SCD.

This is my first holiday season with IBD. It’s going to be different and I’m going to have to just ride it out. Going on close to 10 years of chronic illness and disability now has taught me a lot about pacing myself. If I need a down day or more, that’s okay. I still struggle with future tripping, fear and worry and continually have to remind myself to live one day at a time…and trust that the same God who watched over me in my alcoholic insanity still has my back today as I fight IBD and dystonia.

Finding Gratitude With Chronic Illness

When I first saw Thankful for Cervical Dystonia I took a deep breath but continued reading. I’ve had enough life lessons, thank you very much! Dystonia is a life changing, miserable condition that has impacted our entire family. How could anyone find gratitude with chronic illness?

But as I read on I saw that the author was grateful for the life lessons that cervical dystonia had taught her. Our worldviews are very different, but I as I read through the list I realized that I have been learning these same lessons myself since my own cervical dystonia diagnosis in 2010. Much like the 12 steps of recovery, some spiritual truths are universal and practical for anyone who seeks them.

Finding Gratitude With Chronic Illness

No matter what chronic illness you’re living with, I know that you’ll find these life lessons to be encouraging as well as empowering.

And if you haven’t found gratitude in chronic illness, that’s okay too. We’re all on the journey. Keep seeking and reaching out to others and the way will become apparent to you. Read on.

Gratitude changes your perspective on the life that you’ve been given. When you have gratitude in your life you:

Feel less victimized by others or what’s happened in your life. Blaming no longer exists. Rather than look at what you may have lost or what you don’t have, you’re able to look at situations in a new light and move forward focusing on what you can do and what you have.
Have a more open heart. Gratitude helps you become more compassionate and empathetic. You’ll be able to connect with people even if you don’t think you have much in common with them. It’s a more rewarding way to live.
With gratitude you’ll be able to recognize and appreciate what you have rather than what you don’t. As you begin to become aware of what is good and positive in your life, what is good and positive will grow.
Attract more gratitude and happiness. It’s often found that people attract experiences and people based on what they expect. If you focus on and expect good things to happen, more good may show up.

Keep A Gratitude Journal

Gratitude journals are often quicker to write in than full out personal journals so provide a quick snapshot into a span of time. If you don’t have time to write out a full narrative, jotting down some quick thanks is perfect. When you are feeling depressed or having trouble finding what’s positive, go back and look over your previous entries and gain a new slant on everything that is right with your life.

There’s no wrong way to begin and keep a gratitude journal. You might want to make it a daily habit, or you can keep the journal in a handy place and to write thankful thoughts when the mood strikes.

Gratitude Journal Prompts

Music
Your pets
Nature
Your body – no matter what it’s capable of
The gift of story in books, movies and social media
Your faith
Meditation
Art
People
Food
Your Home
Modern conveniences
Your work
Experiences
Hobbies that bring you joy.

Finally, here’s some Christian scriptures to meditate on:

Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

Give thanks to the Lord, for he is good. His love endures forever. Psalm 136:1

Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way. James 1:2-8

Chronic Illness

5 Tips to Finding Balance Living With Chronic Illness

More Coping Strategies for Living With Chronic Illness

Living With Chronic Illness Blogs

How do you find balance while living with chronic illness?

Brain Fog Symptoms

5 Ways to Get Rid of Brain Fog

Move Around

Stay Hydrated

Eat Well

Rest More

Just Pick One Task to Start

Review and Refocus

Use Planners for Brain Fog

Food Supplements for Brain Fog

Vitamin D

Omega-3s

B Vitamins

Circumin

Essential Oils for Brain Fog

Recovering from Brain Fog

My Chronic Life

The SCD Diet

Self Care

What I’m Reading

My Journaling Practice

In the Kitchen

Recommended Books

Chronic Illness Blogs

Blogs for Parenting With Chronic Illness

More Reads for Moms With Chronic Illness

What are the signs and symptoms of chronic fatigue?

How long does chronic fatigue syndrome last?

Can chronic fatigue syndrome be cured?

Does chronic fatigue weaken the immune system?

Yoga For Chronic Fatigue

What It’s Like to Have Chronic Fatigue Syndrome Now

Special Considerations

10 Symptoms of Stress

What Happens To Your Body When You’re Stressed?

Ongoing Tension and Pain

Eating Disorders

Heart Issues

Stress Management Techniques

A Simple Christmas is Okay

Surviving the Holidays with a Chronic Illness

The SCD Diet

IBD and Mental Health

How Sobriety Helps Me Cope

Finding Gratitude With Chronic Illness

Keep A Gratitude Journal

Gratitude Journal Prompts