Feeling Like Dr. Jekyll & Mr. Hyde With Chronic Illness

Personality changes are common among people with chronic illness. Because of chronic pain, extreme fatigue and exhaustion and just the severity of the illnesses can take a real toll on patients mentally along with physically.

I personally feel like Dr. Jekyll & Mr. Hyde and I’m sure that many people over the years have wondered who the real Sandy is because of this. I have always basically been an upbeat, happy person who smiles big and loves life and gets really excited about new adventures. But when I am having a bad day or a severe flare, I need to be left alone. I don’t want to talk to anyone, I don’t want anyone around me, and I am not very friendly. Every little thing annoys me and I become a recluse. Going back to work a few hours a week has helped this somewhat because it forces me to get out but it can be very difficult working with the public when I am having a CFS, Fibromyalgia and/or IC Disease flare.

I have always felt like I needed to hide how bad I really feel and, as long as I am not feeling extremely bad, I can usually put on a smile, turn on the charm and do what I need to do while I’m in public.   Once I get in my car or get home, I burn out and there’s nothing left.  I try to put on a happy face at home, especially for my son, but there are times when that’s not even possible.  I can say just one word to my son and he will know I’m not well.  He will say, “I can tell you’re sick, Mommy.  Your voice sounds funny”. 

Back when I first became sick, I learned how to force feeling well and acting well because I believed that if I pretended that I was healthy, I would become healthy.  Now after being sick 20 years, I know that thinking myself well is only making me more exhausted and sicker some days because it takes a lot of energy to try and be  like the person I am when I feel well.  I can’t seem to stop doing it, however.  I think it’s because when I am having a really bad day and it’s noticeable to others, I don’t like the attention.  I don’t like hearing that I look bad, tired, sick, exhausted and all of the other comments that I get.

Even around my family (parents, in-laws, etc.) I will try to hide how I feel a lot of the time when I am around them.  I will turn on the smiling face, try to crack a few jokes while the whole time I just want to be in bed because my body is screaming for me to go there.  When I know that I am too bad off to be able to fake it, I just stay away.  I know it’s hard for them to understand and none of them possibly can because they don’t live in my body. 

Personality changes because of chronic illness affect our daily lives and relationships with family and friends.  How have you learned how to cope with your Dr. Jekyll and Mr. Hyde times?  Let me know in the comments!

Using What’s In Your Kitchen to Alleviate Pain & Inflammation

More and more people are trying to find more natural and less invasive methods of treating pain and illness these days.  With all of the problems we hear routinely regarding prescription & OTC medication side effects and problems they cause, it isn’t any wonder people are using more natural ways of treating their problems. ChicagoHealers.com Practitioner, Dr. Steven Arculeo, DC, says this about NSAIDs:

Each year, the use of NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), account for an estimated 7,600 deaths and 76,000 hospitalizations in the United States. NSAIDs include: aspirin, ibuprofen, naproxen, diclofenac, ketoprofen, and tiaprofenic acid. Researchers are now linking inflammation to an ever-wider array of chronic illnesses such as hay fever, heart disease, depression, diabetes and colon cancer.

Arculeo recommends ridding these items from your kitchen as they may cause inflammation:

• Soda
• Processed foods
• Alcohol
• Hydrogentated/trans fat
• Red meat
• Caffeine
• Sugar

Replacing the above food items with fresh vegetables, fresh fruits and lean meats may decrease inflammation which in turn may help reduce illness and pain.  Here are some food items Arculeo suggests:

• Apples & Blueberries: these fruits are packed full of nutrients and are natural anti-inflammatories
•  Kale: contains over 80 nutrients per serving
• Fish: one of the most powerful anti-inflammatory foods, fish contains heart healthy and anti-inflammatory Omega-3 fatty acids. Choose cod, salmon or tilapia instead of the fatty deep water bottom dweller fish such as shrimp or catfish
• Ginger: aids in digestion
•  Garlic: lowers hypertension and cholesterol
• Basil, Parsley, Rosemary, Turmeric, Thyme, Chili Peppers & Cinnamon: all are proven to have anti-inflammatory properties
•  Oil: use cold pressed extra virgin olive oil to aid in decreasing inflammation

My Journey With Gluten-Free Eating Begins

Last week I started cutting gluten out of my diet to see if I will start noticing any difference in my symptoms.  Instead of cutting all gluten products out of my diet at one time, I have been replacing gluten-free items for the regular foods I was eating as I run out of them.  The reason for slowly transitioning is because I know me and I would get too overwhelmed if I cut everything out at once.  I also have to consider having withdrawal symptoms from cutting out all of the gluten at once and I do not need to suffer from anymore symptoms.  I ran out of my favorite wheat bread last week and I replaced that with brown rice tortillas.  I am going tomorrow to get gluten-free noodles so that I can make some homemade chicken corn noodle soup.  I notice that since I’ve been sick with this sinus problem the only thing I can eat that doesn’t make me feel nauseated is chicken corn soup and chicken noodle soup.

I have been checking out online different gluten-free recipes and I hope that I can adjust to this new diet regimen without too much difficulty.  There will be lots of things that I am going to miss eating but it’s worth a shot to see if I feel any better. 

I’ll keep everyone posted on my gluten-free transition and progress!

Guest Blogger Post: The Messages in Physical Pain

Please welcome Abigail Steidley, owner of The Healthy Life, LLC Life Coaching Services and blogger of The Vagina Dialogues as guest blogger for this week.  You can read Abigail’s bio at the end of her post.

Pain and illness are ways the body sends important information to us. Think of pain as an email or text from your inner, wise self. Before you get angry at your body for sending such a strong message, realize that it’s been trying to speak to you in gentler ways. The body is the conduit for all wisdom from our wiser, higher self. It will nudge you with emotions, physical tension, and sensations. If you’re not listening, it has no other recourse besides pain and illness.

For me, even after I understood this concept, the hardest part was decoding the message. I would fume, arms crossed, as I tried to find a way to glare at my body. I even yelled at my own body, saying “I’m listening! I hear you! But what the hell are you saying? Don’t you speak English?”

As a coach, my primary job is to help others decode the messages held within the pain. Generally, this involves quieting the mind chatter and learning to tune into all the physical sensations happening in the body at any given moment. After a short stint of stillness, you’ll find that yes, the body does speak English. In the quiet stillness, aha moments and revelations happen.

After much of this work, though, I can tell you the common body message themes. Most people’s bodies are sending messages about the following:

Learning to nurture yourself instead of push yourself

Learning to love yourself – unconditionally

Learning to release the constant pressure you’re putting on yourself

Learning to be gentler with yourself

Learning to consistently check in with the body so it doesn’t have to shout

Learning to honor and feel emotions

Learning to recognize the power of thought and begin to think intentionally

Learning to focus your awareness on yourself first – only then are you truly effective and helpful to others

Learning to develop inner joy

It’s so easy to just ignore these messages, but take a moment to ponder this idea: The body/wise inner guide finds these concepts so vital that it sends a strong message you cannot possibly ignore.

Indeed, if you were to take the messages above to heart and focus on studying them daily, you would find every aspect of your life unfolding in new, easier, more joyful ways. You would be astonished at the good, loving experiences you would begin having. Just ask any of my clients, for they are all doing the homework from this same lesson plan. The small, personal details in each body’s message may be different, but the general class outline is definitely the same.

These lessons are a life’s work, but I’ve never studied a more interesting curriculum. It’s a fun life’s work, and it doesn’t take long before the benefits arrive. It just keeps getting better.

In the following weeks, I’ll be talking about each of the messages/lessons in turn. Stay tuned!

Abigail Steidley is a Mind-Body Health Coach and author of The Vagina Dialogues (http://vulvodyniacoach.wordpress.com).  She writes about her personal experience utilizing a mind-body approach to get relief from IC and vulvodynia.

A New Interstitial Cystitis Diet Has Been Released

Interstitial Cystitis patients everywhere can now check out the newly revised Interstitial Cystitis diet by visiting this link on the IC Network.  The IC Diet Committee spent six months creating a new and updated list of foods IC patients should be eating and foods that need to be avoided. The committee included Julie Beyer RD (author of the Confident Choices books), Bev Laumann (author of A Taste of the Good Life: A Cookbook for an IC diet), Barbara Gordon RD (Executive Director of the ICA), diet IC researcher Barbara Shorter RD (Faculty member at Long Island University) and Jill Osborne, founder of the IC Network.

This is what Jill Osborne had to say about the new diet list:

With three registered dietitians on the team, two IC cookbook authors and key leaders from the two largest IC organizations in the USA, we were determined to create the “ultimate” diet list that blended both anecdotal patient reports with the solid, valuable data gathered from the IC and diet research studies conducted at Long Island University. This new list replaces ALL previously released lists. It is much more comprehensive than previous lists, recategorizes several foods into more appropriate categories (i.e. many cheeses have been moved to the middle “Try It” column) AND provides a list of foods that we think would be soothing during your worst IC flares.

Please click the link below to view the entire guide!  You can print it out, take it your doctor also to view.

2009 IC/PBS Food List

Pelvic Pain Seminar to Be Held In New Jersey

On November 7th & 8th, there will be an Orthopedic Management of Pelvic Pain Seminar in Englewood, New Jersey. Orthopedic Management of Pelvic Pain is a lab-based continuing education seminar designed for the clinician that has practical experience in the evaluation and treatment of pelvic pain conditions. it will explore, in depth, the role of sensitization, referred pain patterns and neurological convergence in pelvic pain patients, introducing a new treatment strategy that can be easily melded into your current strategy.

Both the patient and clinician will benefit from the immediate & measurable reduction in the patient’s level of pain, muscle spasms and dysfunction.

When: November 7th & 8th, 2009

Where: 177 North Dean Street, Suite 302. Englewood, NJ 07631

Course cost: Free introductory offer

CEUs: to be awarded to those that complete the two day course

For additional information on the course and/or to register to participate, please email: peter@philipphysicaltherapy.com.

Are ME/CFS Patients Suffering from Gluten Intolerance?

I have been reading a very interesting book by Dr. Stephen Wangen, the gluten-free doctor, Healthier Without Wheat and I have found the book to be rather fascinating. I wrote recently on Fighting Fatigue about how Celiac Disease can be misdiagnosed as ME/CFS but I never realized that Celiac Disease is only one type of gluten intolerance.  You don’t have to have Celiac Disease to have an intolerance to gluten-containing products.

While reading this book I have discovered that many of the symptoms that we suffer from with ME/CFS are also common symptoms that people who have a gluten intolerance suffer from.  Here are some of the symptoms of gluten intolerance in adults:

• Diarrhea
• Constipation
• Heartburn
• Abdominal pain
• Headaches, including migraines
• Fatigue
• Muscle aches
• Joint pain
• Hypoglycemia
• Eczema
• Acne
• Mental fogginess
• Anemia (iron or B12 deficiency)
• Frequent illness
• Itchy skin
• Low bone density

How many of the above symptoms can us ME/CFS patients say we have?  I can check off most of these. 

Emotional symptoms experienced by gluten intolerance include:

• Anxiety
• Irritability
• Depression

It just amazes me by reading this book how much I can relate to the examples he includes from patients who have suffered from gluten intolerance and/or Celiac Disease.  The more I read the more convinced I become that I need to try an elimination diet to see if I notice an improvement in any of my symptoms.  I have thought about doing this many times before but I have never followed through with it because I love products that contain gluten, particularly bread.  Wheat bread is my favorite and I eat sandwiches almost every day for lunch using wheat bread.  It is going to be a hard habit to break but it will be worth it if I start to feel better. 

Here is an excerpt from Healthier Without Wheat on gluten intolerance:

Many people, probably many millions of people, have a non-celiac form of gluten intolerance and experience one or more of these problems (see the list of symptoms I wrote above).  Because the conditions associated wtih  non-celiac gluten intolerance have more than one potential cause, and because so little research has been done on non-celiac forms of gluten intolerance, it is difficult to say how often these symptoms are caused by a gluten intolerance.  It is possible that gluten intolerance is the cause far more often than most people currently suspect.  Recent studies estimate that non-celiac forms of gluten intolerance are approximately 30 times more common than celiac disease and may affect up to 15% of the world’s population.

I’m not a physician, nor do I tend to make this post sound like ME/CFS is caused by gluten intolerance.  I am just wondering if maybe my particular situation couldn’t be helped by cutting out gluten products.  I am going to finish this book, do a little more research, and go shopping for some gluten-free food items to see if after a few months I notice an improvement in symptoms.  It’s worth a shot and what’s the worst that can happen? 

Have any of you ever cut out gluten and noticed your symptoms improving?  Let me know!

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