One Thing Can Lead To Another …

Dare I say it? Yet, if you are living with a Chronic illness, you know it’s true. Secondary conditions happen. In fact, by 2020, it is projected that 157M Americans will be living with some form of Chronic illness. And 81M, well over half of them, will have multiple conditions. But what exactly are these secondary illnesses? The list is long and complex, i.e. Depression, Anxiety, Lupus Nephritis, Pericarditis, Sjögren’s SyndromeCushing’s Syndrome, Secondary Raynaud’s, Secondary Fibromyalgia, Myocarditis, Anemia, Dysphagia, Glaucoma, etc. This isn’t about a low-grade fever, or stiffness. These secondary conditions are serious health problems, in their own right. And when they follow your initial diagnosis, it is both scary and frustrating.

 

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Because of the sheer nature of how a Chronic illness effects a patient, from onset through progression, I want to focus for a moment on Depression and Anxiety. Both are common among the chronically ill. Life is changing. Physical and/or mental abilities are changing. To say that it’s overwhelming is, well, an understatement. The diagnosis alone usually hits a patient like a ton of bricks. Some chronic illnesses, i.e. Parkinson’s, Stroke, etc., actually effect the brain. These changes can directly lead to Depression. Anxiety and stress can also lead to depression. Both are felt by patients who live with any Chronic illness. And a secondary diagnosis can magnify these problems.

If you are experiencing symptoms outside the norm for your diagnosed condition, you should talk to your doctor. You may be living with a secondary illness. And it should be treated — not ignored. A good Support System will help you to cope with your Chronic disease as well as the secondary, i.e. family, friends, doctor, etc. Think of it as a “team sport”! Support Groups are available in many areas. If you are interested, you can contact national organizations for details, i.e. American Cancer Society, SAMHSA, American Lung Association, American Heart Association, The Arthritis Foundation, etc. Or simply ask your physician. These are very beneficial for caregivers, too.

Optimism is also key to living with and effectively managing your Chronic condition. Understand your illness — don’t just accept the diagnosis. If you want another medical opinion, ask for one. It is your body and your right. Learn the facts. Knowledge is power. Find out what you can do, i.e. diet, exercise, medications, etc. Pace yourself. Delegate tasks to reduce your stress level. Understand that setbacks can and usually do happen. Secondary conditions are common. Pursue preventative measures, if possible. If not, maintain your perspective. Blaming yourself isn’t going to help the situation. A Secondary Condition isn’t the end of the world. Let’s say that, again … a Secondary Condition isn’t the end of the world. It’s just a curve-ball that you must deal with. And you can. Millions of patients are doing it. So, give it your best shot! 

Always make the most of every day. Even the difficult ones are a gift. Although, they may not feel like one. With a positive approach, you will also feel better both mentally and physically. You will be able to manage the changes, too. And get back to living!

 

 

Reference Links:

https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

https://medlineplus.gov/ency/patientinstructions/000602.htm

Secondary Conditions

http://www.jrheum.org/content/46/2/127

Managing Multiple Rheumatic Diseases: How One Patient Copes with Her Disabilities & Advocates for Others

https://www.cancer.org/treatment/support-programs-and-services.html

https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml

https://www.samhsa.gov/find-help/national-helpline

https://www.ncbi.nlm.nih.gov/books/NBK11438/

https://www.lung.org/support-and-community/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209342/

*Photo by Kyle Glenn on Unsplash

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More Than Tired: Chronic Fatigue Syndrome

Are you tired? We’ve all been there. For one reason or another, most of us have struggled with fatigue. Perhaps, you couldn’t sleep the night before? Or you burned your candle at both ends until you were exhausted? It happens. A cold, flu, or other illnesses can also result in fatigue. But what if there is no reasonable explanation? Then, like the millions who suffer from Chronic Fatigue Syndrome, you may be more than tired. You may be living with a complex Chronic illness.

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Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis as it is also known, is a complicated disorder. Symptoms of CFS/ME include:

  • Fatigue
  • Loss of Concentration and/or Memory
  • Unexplained Muscle and Joint Pain
  • Headaches
  • Unrefreshed Sleep
  • Extreme Exhaustion

Since these symptoms can accompany other illnesses, it’s important to see a doctor for a proper diagnosis. And your patience is required. It isn’t unusual for the final diagnosis to take a while. Most patients will tell you that they waited months (years, in some cases) and saw more than one doctor. Age and gender play a role, with CFS. Women are much more likely to be diagnosed than men. Patients are usually middle-aged (typically their 40s), at onset. It is also believed that certain “triggers” may initiate the disease, i.e. viral infections, fragile immune systems and hormonal imbalances. Since there is currently no cure or specific treatment for CFS/ME, physicians focus on relieving the patient’s symptoms. This can be daunting and sometimes frustrating.

As with other Chronic illnesses, patients who live with CFS/ME must learn to manage their illness. Daily living becomes a juggling act. But with a few easily implemented tips, it can become easier:

  • Low-impact Exercise done regularly, i.e. walking, Tai Chi, swimming, Yoga, Pilates, etc. It will keep you active & strong.
  • Pay attention to your diet. It’s your fuel. The Mediterranean Diet has been helpful to many CFS/ME patients.
  • Puzzles, Word games, Trivia, etc. will keep your memory sharp.
  • Adjustments to your workload may be necessary, i.e. PT instead of FT, etc. About 50% of all CFS/ME patients remain in the workforce.
  • If you need help, ask for it. Friends, family, co-workers and Support Groups can play an important role in CFS/ME management.

Last, but not least, it is important to keep your expectations realistic. Anyone with a Chronic illness will tell you that overdoing it, pushing yourself, and/or ignoring your illness/symptoms is a recipe for disaster. Be kind to yourself. Make the necessary changes. Stay optimistic. Move forward. Progress, no matter how small, is still a step toward better living. The triumphs do add up. And remember … every day is a gift. Some are better than others. But when you’re living with a Chronic illness, it’s key to make the most of each one. Whether it’s a day of rest in your jammies, or a day doing something really special, it’s important for your well-being. Enjoy it!

 

Reference Links:

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome

https://ammes.org/diet/

https://www.webmd.com/chronic-fatigue-syndrome/tips-living-with-chronic-fatigue#1

https://www.huffpost.com/entry/low-impact-exercises_n_1434616

https://www.healthline.com/nutrition/mediterranean-diet-meal-plan#foods-to-eat

*Photo by Kevin Grieve on Unsplash

 

Great Is Thy Faithfulness …

When life is going well, it’s easy to profess one’s faith. I have heard many do so. And, for the record, I do not doubt their sincerity. They are describing their spiritual journey, thus far. But the real test of faith for anyone comes through difficulties in life. Hardship. Suffering.

God promises us many things. He keeps each and every one. But an all-inclusive membership into some “comfort club” isn’t one of them. Christianity isn’t that. It never has been. In Scripture, He actually warns us of the hard times that will eventually find their way into our lives (John 16:33) and of His own discipline (Hebrews 12:7). Christianity isn’t easy. But it is fulfillment in life … a deeper understanding … a walk with God. And, like the trials we face, it transforms us … molds us … into something greater (Philippians 1:6). The Lord sees to that.

 

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     “I have chosen the way of faithfulness …”  — Psalm 119:30 (NIV)

 

Sometimes as we struggle with a Chronic illness, or watch a loved one do so, it’s difficult to see a reason or worthwhile purpose. It’s hard to imagine that any measure of good can ever come from it. Yet, the Apostle Paul tells us that it’s possible for good to come from horrific things (Romans 8). Imagine that.

Our suffering may seem too long, or unnecessary. We may wonder, “Why, Lord?” Doubts may eat away at us. That’s not unusual. We are all human. And fear is a powerful thing. Still, we wait … we pray … we trust. We cling to our faith, because we believe that God keeps His promises. When it would be easy to ask, “Why me?”, we know the more correct question is “Why not me?” No matter how difficult, or how long the road may be, we are not alone. The Lord is with us. We will get through it … each of us … because great is our faithfulness.

 

Reference Links:

*Photo by Samuel Martins on Unsplash.

Holistic Approaches To Chronic Illness

Holistic Medicine is a different approach to healing … one that considers all facets of human nature – physical, mental, emotional, and spiritual. Doctors, who embrace this approach, believe that the whole person is made up of interdependent parts and if one part is not working properly, the others will be negatively affected. In other words, the imbalance/s (physical, emotional, or spiritual) will impact their overall health. They believe the key to achieving one’s best health depends upon attaining a proper balance in life — not just focusing on symptoms and writing prescriptions. But can this approach work when treating Chronic illnesses?

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The simple answer is “Yes, it can!” Many Chronic illnesses can be effectively treated and managed with a Holistic approach. A few examples are:

  • Fibromyalgia
  • Crohn’s Disease
  • Arthritis
  • Asthma
  • Chronic Pain
  • Kidney Disease
  • Depression
  • Anxiety
  • Auto-Immune
  • Parkinson’s Disease

According to the American Holistic Health Association (AHHA), there are 4 major factors that impact our health: Heredity, Environment, Medical Care and Lifestyle. Of these four, Lifestyle has the most influence — approximately 50%! And lifestyle can be changed! The success stories are endless!

If you or a loved one is interested in learning more about Holistic Medicine, you can visit the American Holistic Health Association’s website at https://ahha.org for additional information, referrals, etc. There is life with a Chronic illness. As a person who lives with more than one of them, I can assure you that the answer isn’t always in a prescription bottle. Sometimes, it comes from where you would least suspect. And optimism is always key to finding the right balance that works for you!

 

Reference Links: 

https://www.webmd.com/balance/guide/what-is-holistic-medicine#1

https://ahha.org/selfhelp-articles/principles-of-holistic-medicine/

http://icpa4kids.org/HPA-Articles/holistic-approach-to-chronic-illness.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5847356/

https://www.cnn.com/2014/01/10/health/secrets-pain-free-life/index.html

https://ahha.org/

*Photo by Deniz Altindas on Unsplash

Consider The Caterpillar …

If you’ve been recently diagnosed with a Chronic illness, you probably aren’t thinking about gardens … or flowers … or caterpillars. You may be too overwhelmed to focus on much of anything, except your disease. And that’s understandable.

Often times, the diagnosis falls on a patient like a ton of bricks. You may be angry. Perhaps, you feel inadequate? Scared? Changes to your body, your lifestyle, your abilities, even your mobility, hit with little warning. Pain can be a battle all its own. You weren’t prepared for it. You may even be angry.  And you aren’t alone. 

Approximately, 157M people will be living with a Chronic illness in America by 2020. Millions more, globally. In fact, these illnesses are projected to account for 75% of all deaths worldwide. Chronic illness, or non-communicable diseases (NCDs) are now the biggest health issue that we face. So, proper diagnosis … treatment … and management are vital. And your mindset is equally important. 

 

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“Just when the caterpillar thought the world was over, it became a butterfly.” — Chuang Tzu

 

Many patients develop additional health issues, i.e. anxiety, depression, etc., as their lives become more complicated. Some may even feel as if their life is over — defeated by a condition that they neither wanted or asked for.  If this describes you, please, try to keep your perspective.

Build a Support System that includes your doctor/s, family and friends. Discuss your concerns, openly. Make the necessary changes. Be patient with yourself and your illness. Maintain an optimistic outlook. It does make a difference. And on the tough days … even weeks … remember the fate of the caterpillar. You too can fly, again — even soar — despite your Chronic illness. Change isn’t always a bad thing thing. Often times, it can bring out the very best in each of us!

 

Reference Links:

http://www.nationalhealthcouncil.org/sites/default/files/NHC_Files/Pdf_Files/AboutChronicDisease.pdf

https://www.weforum.org/agenda/2017/12/healthcare-future-multiple-chronic-disease-ncd/

https://www.who.int/nutrition/topics/2_background/en/

https://www.health.harvard.edu/heart-health/optimism-and-your-health

https://www.ncbi.nlm.nih.gov/pubmed/23510498

https://www.psychologytoday.com/us/groups/chronic-illness

*Photo by Aaron Burden on Unsplash

 

 

 

The Greatest Of These Is Love …

We usually talk about Chronic illnesses and treatment, management, awareness, etc. But, for a moment, let’s talk about others effected by the disease — family and especially caregivers. 

No matter the patient’s age, or the specific illness involved, a Chronic condition effects more than one. Family members must also cope. Some may worry about genetic factors. Others may feel guilty, if they live far away. A few may have difficulty accepting the diagnosis at all. Caregivers, God bless them, are juggling everything — the needs of the patient, the family, doctor visits, medications, work, etc.

It isn’t unusual for a caregiver’s life to be drastically changed, by their new role. Some will put their careers on hold — hoping for a return to normalcy in a short time. Others literally see their professional careers end, as the role of caregiver consumes every minute of their day. Many allow their own health and well-being to go on the back-burner. This often creates additional health issues (for the caregiver). Weeks turn into months … then into years. It takes a toll. The caregiver finds himself or herself doing things they had never imagined doing, i.e. administering shots, buying diapers for a parent, protecting the patient’s rights, or watching a child suffer with pain. There is nothing easy about being a caregiver. It is a very mentally, physically and emotionally challenging role. And previous experience in no way means that you are adequately prepared for being a caregiver, again. Each patient, each illness, is different. 

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“And now these three remain: faith, hope and love. But the greatest of these is love.” —             1 Corinthians 13:13 NIV

Twice, in my life, I have had the privilege of being a caregiver. I use the word “privilege”, because in some ways it was rewarding, i.e. close-knit talks, deepened relationships, special moments, etc. It was also highly stressful and at times downright scary. My first experience as a caregiver was for my father, 1989-1990, as he battled cancer. The second for my mother, in 2008, when she battled cancer.

Despite the common denominator, they were two vastly different experiences. My father was terminally ill, upon diagnosis, with lung cancer. He ate anything that he wanted and pretty much did anything he wanted, until his death. No medications to administer (seriously). No use of oxygen (seriously). His radiation treatments also went well. He truly lived every moment of life to the fullest. We should all be so lucky. I realize that, now. But at the time, I lived in high anxiety of what might happen. My mother was just the opposite. With Mom, everything that could go wrong … did go wrong. I charted over 20 medications, daily. She had every unusual side-effect to chemotherapy that a patient could have. No nausea or hair-loss (seriously). In the end, she was beating the cancer but succumbed to the worst of these side-effects (a pulmonary embolism or blood-clot). It was frustrating and heart-wrenching. The last thing that she asked of me was to sing. So, I sang … and sang … as she drifted into an unconscious state … gasping for every breath. I would rest for a couple of hours and start singing again … tears streaming down my cheeks.  Then, I’d pause … pray hard … and sing some more. This went on for 10 days. And by the grace of God, I managed. I was with her, voice and all, till the end.

If you know a caregiver, then you know the love that he or she so unselfishly gives. You may know a few of the burdens that they are carrying, i.e. responsibilities to the patient, their family, their job, etc. You may even know some of their fears. So, please, let them know that you care. Offer to sit with the patient, for a couple of hours. Ask if there is an errand that you can do for them, i.e. pharmacy, supermarket, etc. Drop by with a warm casserole for dinner. It may sound silly, but you’ve just taken a task off of their “to-do” list. You have lightened their load and offered support. Many caregivers will never ask for any help. They have their reasons. And, often times, they will neglect themselves before they do. But you can give them the little boost that keeps them going. Because without that caregiver, rest assured, things would be much worse.  So, give them a break … a hug … show your appreciation … share some love. They need it, as much as the patient does!

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

https://caregiveraction.org/resources/10-tips-family-caregivers

https://www.nia.nih.gov/health/taking-care-yourself-tips-caregivers

https://www.stoptheclot.org/about-clots/faqs/faq-blood-clots-cancer/