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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So What Do You Say?

Someone in one of my on-line support group asked:

Does anyone with fibromyalgia say they have CFS? Some times I think it’s easier…

That’s because, in Australia, we don’t have the ads for medications – we don’t have people who know what FM is. When some-one asks me about it, I always say that it’s like CFS but with pain. It’s the easiest way I can explain it.

Leah TylerIt was timely that Leah from the Chronicles of Fibromyalgia blogged about the Stigma of Fibromyalgia:

Last week I went to the post office and had yet another enlightening conversation with the clerk helping me. It’s a conversation I’ve had many times with many different people during a variety of activities. In fact, it doesn’t seem to differ much at all regardless of who I am talking to. She took one look at my The Fibromyalgia Crusade return address labels and repeated the name slowly. “I’m tired all the time, how do I know if I have Fibromyalgia?” she asked. The way the question was phrased indicated this person had some prior knowledge of at least one facet of Fibro symptoms. I paused for a second to figure out how to best answer this question. “Well,” I answered honestly, “when it gets so bad you’d rather die than continue living it’s time to go to the doctor.” Was that dramatic enough? She gave me a rather perplexed look. “It’s extremely painful too. A central nervous system disorder that increases painful sensations in the muscles and ligaments,” I added. “So it hurts like when you work out too much?” she asked with an utterly obnoxious smirk. Ahhhh, I thought to myself. Someone in her life has Fibro and she doesn’t like it one bit! Doesn’t understand it, doesn’t believe it…

“Oh no,” I answered, unwilling to be painted into a corner on this one. “It’s like the flu. A really bad flu. Forever. For years. It never goes away.” That reached her. She got a look on her face which was a wonderful combination of shocked horror and blatant discomfort. Our conversation about Fibromyalgia ended there and I quickly paid and left. Well the second we stepped outside the friend I was running errands with got a wigged out look on her face. “You sure handled that a lot better than I would have!” she yelled. “I wanted to reach over and smack her across the face!” I laughed and thanked God for the supportive people in my life. So I explained my diplomatic approach, how getting people to understand and relate it to their lives is far more important than being right or caring how strangers perceive me. And as we talked through this twelve second conversation and the many layers of meaning it held I realized something overwhelmingly profound had happened.

I didn’t get upset! I was confronted with a doubter and didn’t experience one blip of spiked blood pressure. There was no taking this person’s disbelief personally or feeling ashamed I have something so many people don’t understand or give credence to. There was me, explaining it, putting real world comparisons to my pain and symptoms. And then ultimately walking away and not giving one rat’s woo-ha if she changes her opinion about Fibromyalgia or not. I’d done my part and hopefully made her think about it in a different way. That’s all I can do. Encounters like this used to leave me outraged, frustrated, bitter and completely bent out of shape. And wondering why I had no ability to tend to my own life. I’ve been working very hard on releasing the need for approval and acceptance from people who aren’t relevant to my existence. I guess it’s working…at least for a twelve second conversation that took place one day last week it is.

How do you react to people asking you about FM?

Fibro – A Greater Impact than Cancer!

Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.

The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.

As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.

The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.

The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.

The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.

Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.

 

***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.