Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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Make Fibromyalgia VISIBLE!

CARE & Make Fibromyalgia Visible would love to support you in creating a memorable International Fibromyalgia Awareness Day event in your community.  That’s where your efforts really make a difference.  FM events occur all through the month of May.

This year, the National Fibromyalgia and Chronic Pain Association (NFMCPA) pulled together all of the best tips and advice–plus tools, from the pros.  Putting on an event can be easier with a ready-made kit that includes a step-by-step check-off list and a Guide to Creating Local Fibromyalgia Awareness Events for more time-tested considerations.

It’s all free and ready to be sent to you!

FM Awareness Day activities (through NFMCPA) revolve around four topics have a special emphasis raising public FM awareness, not just awareness to those who have FM, their families and friends. The NFMCPA created materials for people with FM, Support Group Leaders, and other advocates to create awareness and education of FM and chronic pain illnesses.

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National Fibromyalgia & Chronic Pain Association Community Picnic, Walk to CURE FM, & Mall/Farmer’s Market Table Top* Event Kits contain:

• 11×17 Table top cardstock poster with tripod
• 11×17 Posters for community event boards
• FM Information Brochures
• Guide to Creating Local FM Awareness Events
• Event check-off list start to finish
• Buy Door Prize Tickets sign
• Door prize drawing tickets ($1/ each or 6 for $5)
• Donation sign
• Receipt book for donations
• Support Fibromyalgia Research Petition

An NFMCPA External Events Agreement is available here.  To order your free Awareness Day Event kit, please send an email to info@fmcpaware.org.

An NFMCPA External Events Fundraising form can be found here.

(Fundraising is not required to receive the free Awareness Day Event Kit.  Donations and fundraising are always appreciated – but we don’t want that aspect to hold you back from creating your great event in your community.)

*Table top kits do not contain tickets or ticket signs.

Fibromyalgia Awareness Day Community Picnic Event 

A specific Community Picnic check off list created by the NFMCPA offers instructions to volunteers about how to host a FM Awareness Day Community Picnic.  The information includes suggestions on how to garner local sponsorships such as donations of food items; paper products (plates, napkins, etc.); prizes for old-fashioned picnic appropriate games, i.e., three-legged races, balloon toss, etc.; media awareness development such as local newspaper, radio and television coverage; FM informational brochures and reusable table top posters promoting the “CARE & Make Fibromyalgia Visible” theme.  A Petition for Fibromyalgia Research to find a cure and treatments is part of a larger ongoing effort to send a united message to national legislators and policymakers.

Fibromyalgia Awareness Day – Shopping Malls, Health Fairs, Farmers Market, Table-Top Exhibits

Putting a special emphasis on reaching out beyond the FM community to educate the general public about FM, the NFMCPA is suggesting that people consider hosting an FM Awareness table at a public location frequented by crowds of people.  Most cities have shopping malls that allow community-sponsored nonprofit awareness events. The NFMCPA offers the Fibromyalgia Awareness – Shopping Malls, Health Fairs, Farmers Market and Other Public Venue Event Kit.  If your local area does not have a shopping mall or the management doesn’t allow information tables, then think about scouting out local health fairs, farmers markets, libraries, grocery stores, exercise gyms, etc, to inquire about setting up a Fibromyalgia Awareness Information table.  The Event Kit gives you everything you need to create this type of outreach, including a special check off list for this activity.  Visit here for more information.

Fibromyalgia Awareness Day Walk to CURE FM

The NFMCPA has once again posted information regarding how to hold a local Walk to CURE FM Walk.  NFMCPA’s excellent Guide to Creating Local Fibromyalgia Awareness Events is now available at www.fmcpaware.org website for easy access. Walks are just one of the components listed in this guide which details several options for people who want to host a May 12 Fibromyalgia Day Awareness Event.  If you’d like to create a public FM awareness Walk to CURE FM, new materials offer ideas to involve others in promoting the walk to the general public.  The Walk to CURE FM Check-Off List includes ideas on reaching people outside of the FM Community to participate in this type of advocacy event.  The Guide to Creating Local Fibromyalgia Awareness Events is currently readable on the NFMCPA website, but hard copies of the publication are available for use by NFMCPA constituents and advocates.  A free Walk to CURE FM Event Kit is available on the website and includes a copy of the Guide.

State Legislature Visits – Proclamation and Resolution Program (USA only)

The NFMCPA Legislative Proclamation and Resolution Program is available on the website at http://www.fmcpaware.org/proclamation-and-resolution-program-a (under Community, then Awareness Day).  The information can easily be downloaded and made usable by NFMCPA constituents.  As in past years, people with fibromyalgia and their loved ones will be encouraged to approach legislators to recognize May 12 Fibromyalgia Awareness Day.  Advocates are encouraged to collect support signatures from the public that can be sent to elected officials to illustrate backing from voters.  The NFMCPA plans to build on this public awareness format through 2013 and beyond in an effort to spread CARE to Make Fibromyalgia Visible Campaign.  Click here for more information.

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The observance of International Fibromyalgia Awareness Day, officially May 12, can take many forms.  The 2013 theme – “CARE & Make Fibromyalgia Visible” – encourages people to contribute, advocate, participate in research, and educate others about fibromyalgia.  This day brings people with FM and their communities together around the world.

C.A.R.E & Make Fibromyalgia Awareness

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The National Fibromyalgia & Chronic Pain Association encourages organizations worldwide to make fibromyalgia visible by increasing awareness and understanding during May and on May 12 Fibromyalgia Awareness Day.

To download free logo to use in signatures, on webpages, or wherever you like, Click here.

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The Walk to CURE FM national walks are spreading.  Join or start a walk in your community!  Click HERE. Questions about the Walk to CURE FM?  Experience with creating a walk?  Please share your thoughts on the community tech support forum.  Thanks!

PLEDGE TO CARE

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Family members, friends, and healthcare providers can show their support for those with FM by taking the NFMCPA’s Pledge to Care.  Those who take the pledge with have their first initial, last name, state and country listed on our “We Care” page, along with name(s) of individual(s) they are honoring.  Click Here!

Give through LIGHTS OF HEALTH

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Wherever you are let your light shine at the National Fibromyalgia Awareness Day Event.  Whether you will be there in spirit or in person, you can sponsor a candle in honor of yourself or a loved one living with FM.  Click Here!

AWARENESS EVENTS AROUND THE WORLD

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Fibromyalgia events are held in many places.

 To join an event near you, please locate the “Awareness Day Events” button below the map.
(US – to post your event, please Click HERE!)
(International – to post your event, please Click HERE!)