Chronic Mom Life

Chronic Illness Blog

Chronic Illness

Chronic Illness Diary Vol 1

Chronic Illness Diary - sharing my journey of self care, chronic illness and sobriety. 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

 

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17 Chronic Illness Blogs You Should Follow

 

17 chronic illness blogs you should follow #chronicillness #chroniclife #spoonie

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.

More Reads for Moms With Chronic Illness

When Mommy Can’t Dance: How to be a Chronically Ill Mom

Katie Carone writes: “It’s a hard to be a sick mom. For most mothers, a few days of illness may mean a back-up of laundry and a night or two of frozen pizza or cold cereal for dinner. For those of us moms that are chronically ill, it’s a whole other ball game.”

5 Things Not To Say To a Mom With a Chronic Illness 

Bree Najera writes: “When a friend gets a bad cold, we know just what to do: We send them an encouraging text, order them some UberEATS, or rescue them from their kids for the afternoon. But when people come across a mom with a chronic illness — like me — they absolutely do not know what to do or say. And you know what? I don’t blame them.”

3 Essential Skills for Moms With Chronic Illness 

Allison writes: “Chronic illness affects tens of millions of Americans, many of whom are moms.  I am one such mom.  Perhaps you are too.  It’s good to recognize we are not alone, that we are still good parents.  That’s right!  Our parenting strategies may differ from the norm, but we need to release ourselves from the guilt that tells us we aren’t successful.  We can positively simplify with 3 essential skills and happily succeed as moms with chronic illness.”

Parents and Chronic Illness: Take Care of Yourself and Your Child

This is a great article describing the hurdles of parents with chronic illness who live with conditions such as MS, scleroderma, diabetes, lupus and chronic fatigue. Also has some helpful tips about how to help a sick mom friend.

How Living With a Chronic Illness Has Made Me a Stronger Mother.

A bit fat Amen to that! Written by Rachel, a type 1 diabetic who shares self care tips to help her cope with the daily challenges of living with chronic illness.

I hope this list of chronic illness blogs gives you a starting point to finding your online cope. For me, knowing I’m not alone is half the battle.

Yoga for Chronic Fatigue

Why you should try gentle yoga to relieve chronic fatigue symptoms. #chronicfatigue #spoonie #chronicillness

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

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:

  1. Understanding Chronic Fatigue
  2. The Yogic View of Chronic Fatigue
  3. Mindfulness as a Tool for Healing
  4. Using the Breath as an Energy Source
  5. Yoga poses to Help Reduce Fatigue
  6. Building Daily Self Care Rituals
  7. 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!

 

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

Living with chronic illness

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

10 symptoms of stress you should know & how to reduce stress with relaxation techniques. #stress #mindful

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

signs you're stressed

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.

  1. Limit caffeine.
  2. Don’t drink to relieve stress. Alcohol will likely make things worse.
  3. Increase physical activity
  4. Try meditation
  5. Talk to a friend
  6. Keep a journal or try adult coloring
  7. Improve your time management
  8. Know when to say no.
  9. Take a day trip out in nature.
  10. 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

 

10 symptoms of stress you shouldn't ignore #stress #selflove

How to Survive the Holidays with a Chronic Illness

How to survive the holidays with chronic illness #chronicillness #chronicpain #mentalhealth

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.

survive the holidays with chronic illness #chronicillness

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

BD & MENTAL HEALTH (1)

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.

IBD and mental health

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

 

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.

Gratitude with chronic illness

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

  1. Music
  2. Your pets
  3. Nature
  4. Your body – no matter what it’s capable of
  5. The gift of story in books, movies and social media
  6. Your faith
  7. Meditation
  8. Art
  9. People
  10. Food
  11. Your Home
  12. Modern conveniences
  13. Your work
  14. Experiences
  15. 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


7 Survival Tips to Reduce Holiday Stress

 

It's that time of year! Tips for managing holiday stress #stress #family #holidays #depression #healthtips #parenting101 #healthyliving

The holiday season can be a great opportunity to spend time with family and friends and celebrate. While the holidays can be a joyous time the reality is that for many, holidays are stressful and can cause anxiety. Whether it’s because of finances, family dynamics or other worries, not everyone is excited about the holidays.

The expectations of seeing family, endless social events, gift shopping, and holiday preparation can become too much for even the most dedicated extroverts. All too often, anxiety and depression can become unwelcome holiday guests. Fortunately, there are a number of ways that you can reduce holiday stress and mindfully enjoy the holiday season.

One of the most common reasons that the holidays become stressful is the expectation placed on families who are sometimes overextended emotionally and financially. The added burden to provide big meals, provide gifts, pay for travel and overextend the budget feels like a heavy weight. Families begin to stress out just about the time they are putting away the Halloween decorations. 

Despite Hallmark Channel’s fairy-tale insistence that families all love one another and that just being together is what really counts, many families are fractured, busy and unable or unwilling to live in harmony.

Survival Tips to Reduce Holiday Stress

Have A Simple Christmas

There’s something to be said about having a simple Christmas. It’s very possible to  have a holiday season without the stress and without going all out on decorations, events, and gifts. By scaling back and focusing on the more spiritual side of this holiday, you just might find more joy this season. And as an added bonus, when you keep things simple, you have a lot more time to enjoy everything this special time of the year has to offer.

For my older readers, do you remember what Christmas time was like when you were younger? Chances are you spent the month of December looking at Christmas lights, playing board games, baking cookies and singing Christmas carols. Gifts were probably less expensive but more meaningful and homemade.

So instead of buying more decorations, sort through what you have. Keep what you love and give away the rest. The house will be less cluttered and January clean up will be much easier.

Keep your calendar light too. You don’t have to go to every. single. event. Just pick a few activities and events that you know your family will enjoy. Spend the rest of the time with quiet activities at such as making cookies, crafting and watching holiday movies.

reduce holiday stress

Limit Social Media

The amount of online drama and negativity has dramatically increased with no sign of slowing down. It seems to get worse every week! It can be incredibly draining. Too much time spent scrolling and absorbing other people’s outrage never helped anyone feel any better. Not only that, if the holidays are difficult for you it can increase feelings of despair and isolation. You might want to consider putting strict boundaries on your social media time.

Your time with God has to come first. Spend the first few quiet minutes of every day in quiet devotion and prayer to help center your thoughts. I like to pray the offices to spiritually check in as the day’s stresses begin to accumulate.

Eat Well

The sugar onslaught that begins around Halloween can result in decreased immunity, meaning it’s easier for you to catch everything that’s going around. As much as you can, make healthier and intentional food choices. If/when you choose to indulge, don’t turn it into a binge that lasts into January. Begin eating healthy again at the next meal. And be sure to stay hydrated.

Keep Moving

Set aside some time for movement – whether it’s walking, gentle yoga or just getting outside for a bit, getting your blood circulating is enormously helpful. Any activity or exercise you can fit in will help reduce your stress and elevate your mood. And it will help to keep the extra holiday weight away!

Set A Budget

Admittedly, retail therapy can be great fun but not so much when you have to face the New Year with more credit card debt than you can handle. You can minimize the damage by setting a budget and sticking to it.

Know Your Limits

As a chronic illness patient, I’ve had to come to accept that I can’t do everything that I used to. I don’t bake as much as I once did, try keep the decorations minimal and try to pick just a few holiday events to try to participate in. Set the priorities that work for you and your family and then stick to them.

For some of us, holidays can be really difficult. Not everyone has a supportive extended family close by. If you’re by yourself, look for ways to serve in the community.  If you’ve sick, have experienced a recent loss or are experiencing ongoing financial struggles, you might want to step away from the holidays completely. Take a road trip, go to the beach or mountains. Detach in whatever ways make sense to you.

Reduce holiday stress

Practice Self Care

Self-care is a conscious choice that we have to make on a daily basis not only now, but throughout the year. Take some time and create a deliberate plan of self care for yourself to make it through the holiday season. Find my winter wellness tips here.

The key to having a stress-less holiday is all about preparation and setting boundaries. Holding to a plan that allows for the fun parts of the season without setting the family up for failure is the best way to ensure that everyone has the best time possible, even if times aren’t perfect.


All About My Wellness Journey

My Wellness Journey

My wellness journey really began back in 1986 when I made the decision to start living alcohol free. There were lots of things that lead up to this decision, but one that I remember the most was a simple picture. (which I don’t have anymore!)

I looked like a boozer. My face had the flushed look of a young woman who spent too much time at the clubs.

It wasn’t pretty.

Taking that first shaky step was the most important thing I ever did for myself. As it turned out, it was the last one I ever had to do alone. Anything that’s positive in my life today is because of that decision I made 32 years ago.

My recovery journey has taken lots of twists and turns. I had a lot of inner crap to wade through. But I’ve learned a whole lot about balancing mind, body and spirit along the way. Managing the stresses of special needs parenting while wrestling with my inner demons took a toll on me and years ago I began to suspect I had autoimmune problems.

Cervical Dystonia

In 2010, I was diagnosed with cervical dystonia, a neurological movement disorder similar to Parkinson’s disease. I was in devastating chronic pain and desperate for help.

That’s when I found yoga. I could only start with basic chair yoga but little by little, I began to inch my way back.

Over time I regained my mobility and some normalcy but it was always a thorn in my side. I felt like I was on the sidelines and unable to function like the rest of the moms around me.

My wellness journey

Ulcerative Colitis

Just because you have one chronic condition doesn’t make you exempt from getting anything else. Last December I started noticing some abdominal pain when I was doing yoga. My initial gut reaction (see what I did there!) was that something was very wrong.

Still, it took me a while to get to the gastro and finally to the fateful colonoscopy that confirmed a diagnosis of ulcerative colitis in April of 2018.

This is some scary stuff. I have pancolitis, the form of ulcerative colitis which affects the ENTIRE large intestine. Which explains the pain I was getting under my ribs..and here I was worrying about liver problems.

My wellness journey

My Wellness Journey

As a special needs mom, I had some familiarity with the GAPS diet and was able to source a few things right away. Seeing pictures of fellow Crohn’s & Colitis sufferers in the hospital made me scared to try to do this holistically, so I reluctantly took the two week course of prednisone and then began the course of meds and hoped for the best.

Despite my continuing on GAPS, some of my symptoms got a little more distressing.

Like incontinence. Sorry, I’m too young for this.

This last weekend after crapping my pants for about the 20th time, I decided to go off the meds. (Be assured that I have a gastro and a primary doctor that I won’t hesitate to use if things worsen!)

Am I scared? Yes. But I know via anecdotal evidence that many Crohn’s & Colitis patients were able to do this holistically and get rid of most, if not all, the meds. Nutrition, stress relief and cannabis can go a long way.

Doing My Research

I’m not against traditional doctors at all. You need the diagnosis, the tests and at times, the meds, the antibiotics, the traditional treatments and the surgeries.

But many times they just send you off with a bunch of expensive prescriptions with frightening side effects with no real answers.

I’ve learned to network with others and find out what works for them. I follow what some might consider sketchy alternative health social media pages.

In this day and age, you have to become your own advocate.

The learning is never going to stop.

Moving along..yes, I’m a little scared. But if things begin to escalate I know I can get into my doctor’s office right away. But so far I’m slowly feeling better OFF the meds than I was ON them.

And I did check the formulary for what the next meds to be considered are. They cost from hundred to over a thousand dollars.

That’s motivation enough for me!

Disclaimer: As always, I like to remind my readers that I’m not a health care professional, just a graduate of the School of Hard Knocks. I’m only sharing my journey. Always consult with a trusted health care professional before making any life changes.

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