Are You Searching For Peace?

No, this isn’t about Foreign relations or national policy. This is about you. Are you at peace emotionally? Unfortunately, many patients are not. So, for a moment, be honest with yourself. Has your diagnosis totally turned your life upside down? Is stress and anxiety eating away at you? Fear troubling you? If your answer is “yes”, to any or all of these questions, it’s time to talk about it. First, as I previously stated, you aren’t alone. It isn’t easy to adjust to life with a disease. It’s a sucker-punch. Anyone who has a Chronic illness understands how you are feeling. We have all rode that runaway train of emotions. The denial is real. The frustration and anger is, too. Think of it like the stages of grief that follow the death of a loved one. You are basically grieving the loss of the life you had. The one you enjoyed. It was your comfort zone, even on the bad days. But now … well, now, bad days have a whole new meaning.

 

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“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” — John 14:27 (NIV)

 

As crazy as it may sound, the key to this madness in part is learning how to be sick. It’s like a marathon of coping — 24/7. Why? Because your Chronic illness isn’t a sore throat, or the sniffles. It’s a life change. And sometimes it’s tough. Many of us naturally resist difficulties. We ignore them. But that technique won’t work, here. This is about embracing reality …

There are five stages of grief that patients struggle with, after they are diagnosed:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

While it may feel like an overwhelming nightmare, it is a normal process. So, examine these stages and consider which one you are in. Only you truly know that answer. And let me add, no two patients go through them at the same pace. But progressing through them is your goal.

Now, let’s consider the ways to make life with Chronic illness a little easier:

  • Educate yourself. Learn everything you can about your illness. Soak it up, like a sponge.
  • Put together your Support System, i.e. family, close friends, etc. You might even want to join a local Support Group. Many health organizations offer these opportunities. And numerous places of worship do, too. They can be found online or your doctor can help you find one.
  • Surround yourself with positive people and things. Negativity and pessimism aren’t healthy. Optimism is healthy. That too is key to coping and disease management.
  • Find a hobby,  create a reading-list, etc. On tough days, it will give you something positive to focus on.
  • Many patients find that faith helps them. Bible Study, Prayer Groups, personal prayer, etc., can be very beneficial to the body and mind.

Inner peace isn’t as simple as going to the doctor, taking a session of physical therapy, or picking-up your meds. It’s a very personal journey. Sometimes, it can feel incredibly lonely. That too is normal. Hence, the need for a good Support System. If your mobility is limited, or pain has you feeling down, you can turn to the internet. Sites like this one are created to help you. 

Last, but not least, do not punish yourself for being sick. Chronic illness is caused by many things, i.e. lifestyle, genetics, environment, etc. Some we can change, i.e. smoking, alcohol consumption, weight loss, exercise. Others are beyond our control. As you search for peace, it helps to feel that you have some control over what is happening to your body and your life. So, by all means, eat healthier … exercise … make necessary lifestyle changes. These are all positive things. And it can be as simple as a walk around the block. Or you may prefer a class, i.e. Tai Chi, Pilates, Yoga, Swimming, etc. If you need a nap, then take one. You might even want to keep a journal and share it with your doctor. These changes will allow you to better manage your Chronic illness and no doubt feel better (physically and emotionally). 

We are on a journey. Millions of us. We didn’t plan on taking this trip, but we are going. Together, we can the most of it. We can support each other, learn and inspire. We can live to the fullest!

 

Reference Links:

https://www.rsnhope.org/health-library/finding-acceptance-psychological-stages-chronic-illness/

https://www.psychologytoday.com/us/blog/turning-straw-gold/201809/7-tips-making-peace-chronic-pain-and-illness

https://www.psychologytoday.com/us/blog/the-science-behind-behavior/201607/4-reasons-why-optimistic-outlook-is-good-your-health

https://www.webmd.com/balance/features/can-prayer-heal#1

https://www.canada.ca/en/public-health/services/chronic-diseases/arthritis/arthritis-risk-factors.html

*Photo by Arif Riyanto on Unsplash

 

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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

When Childhood Haunts You: ACEs & Chronic Illness

When most people are diagnosed with a Chronic illness, there is a moment of disbelief. On one hand, you are hearing the doctor. On the other, you just can’t wrap your head around it. As reality sinks in, fear and anxiety often accompany it. Life is, to say the least, changing fast. And at some point, rest assured, you will say, “How did this happen to me?” That’s a good question. But the answer may not be what you suspect. Chronic illness has long been attributed to things like an unhealthy diet, a sedentary lifestyle, tobacco use, alcohol, infectious agents, some environmental factors and genetics. But we also know that trauma, experienced before the age of 18, is linked to it as well.

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This trauma, known as an Adverse Childhood Experience or ACE, is an encompassing term for numerous traumatic experiences from childhood cancer to sexual abuse. Severe traumatic events are believed to have the greatest effect on our long-term health. The toxic stress that they create within a child’s body is consuming and powerful.

In fact, your risk of having mental and physical health problems goes up with the number of events that you have experienced. For example, your risk for health problems is much higher if you’ve had three or more of these ACEs:

  • physical abuse
  • sexual abuse
  • emotional abuse
  • physical neglect
  • emotional neglect
  • witnessing domestic violence
  • substance abuse within the household
  • mental illness within the household
  • parental separation or divorce
  • incarceration of a household member

Other traumatic events may not meet the exact criteria of an ACE, but still have life-altering consequences. For example, a car accident or school shooting can lead to health issues beyond the initial injuries, i.e. depression, anxiety, or post-traumatic stress disorder (PTSD). A 2010 study, published in the journal of Clinical And Experimental Rheumatology, noted that Holocaust survivors were twice as likely to have fibromyalgia than individuals who had lived in Europe during the Nazi occupation.

This does not mean that every Chronic illness can be linked to an Adverse Childhood Experience. It’s just not that simple. There are other variables. But we do know that the biological impact of childhood adversity is real. It can also be difficult, sometimes impossible, to reverse. Experiencing two or more ACEs significantly places a child at a higher risk for developmental, behavioral, or social delays. Sadly, it can even place them at a greater risk for committing acts of violence. And these risks follow them into adulthood.

If you are looking for answers as to where your Chronic illness came from, talk openly with your doctor. If you or your child has experienced an ACE, discuss that trauma/s candidly. It will help your doctor/s to better treat your condition. Whether you are the patient or a concerned parent, it just may offer some insight that can help you to understand, cope, even manage Chronic illness. With any Chronic disease, management is the key to better living. And it starts at home — with you!

May God Bless … 

 

Reference Links:

https://www.who.int/chp/chronic_disease_report/media/Factsheet1.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3153850/

ttps://www.health.harvard.edu/diseases-and-conditions/past-trauma-may-haunt-your-future-health

https://www.healthline.com/health/chronic-illness/childhood-trauma-connected-chronic-illness#7

Trauma-Responsive Schools Must Be the New Gold Standard in Education

Chronic pain and childhood trauma

*Photo by Chinh Le Duc on Unsplash

More Than A Headache: A Migraine

Headaches, like the common cold, happen. We have all had them, at one time or another. But a Migraine isn’t your garden-variety headache. It’s much worse. In fact, it’s a form of Chronic Illness. Approximately, 1 in every 4 American households has a member who suffers from them. Globally, Migraines are ranked as the third most prevalent illness — effecting one billion people. And the impact that this neurological disease has on patients is real. It’s more than a headache. It’s a constant battle that requires treatment, patience and perseverance.

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Migraines usually begin in childhood, adolescence, or young adulthood. When one strikes, they progress through stages, i.e. Prodrome, Aura, Attack, Post-Drome. The symptoms of each stage are distinctive. But not every patient will experience all four stages. If you or a loved one have been diagnosed, you know the symptoms all too well:

  • Prodrome begins 24-48 hours before the migraine occurs. During this time, patients may experience constipation, moodiness, food cravings, neck stiffness, increased thirst and urination, or frequent yawning.
  • Aura can occur before and during migraines. They are reversible symptoms of the nervous system and usually visual in nature, i.e. seeing bright spots, flashes of light, or experiencing vision loss. But Auras can also include other disturbances, i.e. sensations in the arms and legs, weakness/numbness in the face or on one side of the body, difficulty speaking, hearing noises, or uncontrollable jerking movements. These begin gradually and build over several minutes.
  • The Attack, or Migraine itself, lasts from four to 72 hours if left untreated. Frequency varies from one patient to the next. For some, the occurrence is seldom. For others, it may be numerous attacks each month. During this stage, patients experience severe pain (usually on one side of their head). Some patients say that the pain is all over their head. They are sensitive to light, smells, even touch, during this stage. Nausea and vomiting are also common.
  • Post-Drome  is the time following the attack. Typically, it lasts from an hour to a day in length. The patient often feels drained of energy. Others may feel relief that the attack is finally over. Confusion is also common. And many patients report that any sudden head movement brings back pain, temporarily. 

Living with Migraine is difficult. This neurological disease is very incapacitating. In fact, about 90% of patients are unable to work, or function normally, during an episode. Depression, anxiety and sleep disturbances are also common with Migraine patients. And many have a family medical history of the illness. Maintaining a job, let alone building a career, is a challenge. As many as 20% of Migraine sufferers become disabled. All of these factors also impact daily living and relationships.

Despite the strides that are made yearly in medicine, Migraine remains a very misunderstood disease that is often undiagnosed and untreated. Most patients suffer in silence. This could be the result of escalating healthcare costs, limited access to medical care, or too little (if any) support at home/work. Another sad fact to consider is that many patients (25%) would actually benefit from preventative treatment, but only a few (12%) seek it. We need to change that and we can!

If you or a loved one has Migraines, or you suspect that you do, then it’s time to see a doctor and get help. You have options, from holistic treatment to medication. Put an end, or at least limit, your suffering. It’s time to start living, again!

 

Reference Links:

https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201

Migraine Facts

Living with Migraine

*Photo by Anh Nguyen on Unsplash

Where Is Freedom?

Or, perhaps, I should ask what is it? Often times, we associate freedom with politics. But, for a moment, let’s consider another form. Many Chronic illnesses infringe upon the patient’s freedom or mobility. They feel chained to oxygen, wheel-chairs, catheters, insulin, etc. They feel a loss of freedom. I understand how they feel and their frustration. I have been there. Occasionally, I allow myself to ponder the subject even now. But it’s nothing like the torment that it once was. Today, it’s more of a reflection. Cathartic. Dare I say it? A celebration of my ability and perseverance. How? My faith. The Spirit of the Lord is truly freedom. Nothing accentuates that fact like doing battle with Chronic illness.

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“Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom.”  — 2 Corinthians 3:17 (NIV)

There are skeptics, I’m sure. To them, I can only add that spirituality or faith has shown medical results. Consider those findings. I’m certainly not here to debate His divine existence with you. Faith is a freedom in itself — a personal journey. I know my experience. I’m more than happy to share it. But I can’t make such decisions for someone else.

If you or a loved one are struggling with a Chronic illness (and millions are), take a moment to reflect upon your battle. Consider turning to your faith, for strength and solace. Or, perhaps, finding it? Take a breath. And embrace the fact that God doesn’t create junk. He creates beauty, intelligence, strength, etc. He created you and I — just as we are — for a reason. There are no perfect human beings.

Your illness is only as enslaving as you allow it to be. That may sound too good to be true, but our mental health effects our overall well-being. Things like stress, anxiety and depression only complicate things. They don’t help. But a strengthened mind can lead to a strengthened body. When you think beyond your condition, you can break the chains that are holding you back. You can find ways to regain that precious freedom. You can discover new talents, hobbies, even careers. And you can live … fully … happily. You can even thrive! 

May God Bless!

 

 

Reference Links:

https://www.cdc.gov/workplacehealthpromotion/tools-resources/pdfs/issue-brief-no-2-mental-health-and-chronic-disease.pdf

https://www.mayoclinicproceedings.org/article/S0025-6196(11)62799-7/fulltext#cesec230

https://spiritualityandhealth.duke.edu/index.php/the-link-between-religion-and-health

Sharing Mayo Clinic: Eight Lessons on “Compassion in Health Care”

*Photo by Ryan Moreno on Unsplash

Motherhood & Chronic Illness

I once saw a t-shirt that read “Motherhood: It’s more than a job, it’s an adventure!” And I had to buy that shirt. If you’re a mother, you understand why. Sometimes, I think we don’t fully appreciate our mothers until we become one. There is nothing easy about the detail. Motherhood is fascinating and scary … fun and frustrating … rewarding and overwhelming. Yet, I wouldn’t have traded the experience for the world. Some of my most treasured memories in life involve my child. When I look at him, today, I beam with pride. I did a good job, despite my Chronic illness. Though, back in those early years, I often wondered if I was measuring-up. Or if, heaven forbid, he was getting short-changed. 

 

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Let’s be honest; shall we? Motherhood is demanding. Chronic illnesses are, too. And, sometimes, what we want to do conflicts with what our bodies will let us do. Try explaining that to a toddler.

As mothers, we take care of our children. That’s the job. And it’s a 24/7 duty. When we are sick, our responsibility as a mother doesn’t magically go away. It’s still there — packing a lot of guilt. You learn quickly to have a “Plan B”, because that beats doing nothing at all. Think of it as a negotiation, between your condition and motherhood. For example, it’s a snow day. The flakes are falling. And your little one is just dying to play in it. A part of you wants to go, too. Unfortunately, you are aching … stiff … or worse. Reserve such times, for snuggling under a warm blanket … reading a stack of books … or watching a favorite DVD. Maybe, you can even pop some popcorn or make some s’mores (fireplaces do come in handy)? This too is quality time. Sledding can be done with Dad, or cousins. In a day or two, you might even feel like joining in the frosty fun. Until then, be patient. Make the best of the situation. Enjoy every moment — even if it isn’t your “Plan A”.

If you manage your Chronic illness, it will provide you with the best results for living life to the fullest — including motherhood. So, please, keep your appointments with your doctor. Take your medications. Eat healthy. Exercise. Yes, changes in your routine and/or your child’s will take some getting used to. That’s okay. Don’t beat yourself up about it. As strange as it may sound, our children learn from us even when we are sick. If we neglect our health, we send a negative message that tells them it’s okay to neglect theirs. When we take care of ourselves, we send a positive message. That’s a good thing.

Kids understand what “feeling bad” means. They understand terms like “hurt” and “tired”. And they will ask questions. When your child becomes inquisitive about your Chronic illness, be honest with them. Brief answers are usually best, for younger children. So, keep it simple. Teens are capable of understanding more. Then, of course, there is the internet where your child may read anything about your illness (factual or not). Prepare yourself for that, too. Help them find reputable resources online that can provide the best information. Talk openly. It’s good for them and you.

Last, but not least, stay positive. Optimism is key to managing any Chronic illness. It’s good for your health as well as your child’s. Kids aren’t as naive as we’d like to think they are. Our children pick-up on our emotions. If we show fear, they become afraid. If we are depressed, they too can show signs of depression. So, live fearlessly. Live strongly. Live fully. Chronic illness isn’t who we are. It’s just part of the package. We are women. We are mothers. And we are blessed. Happy Mother’s Day!

 

 

Reference Links:

https://www.washingtonpost.com/news/parenting/wp/2017/03/03/how-to-talk-to-your-child-about-your-serious-illness/?utm_term=.f8f4df873208

https://www.fmcpaware.org/why-does-mommy-hurt.html

http://www.igliving.com/magazine/articles/IGL_2013-08_AR_Chronically-Ill-Parents-Helping-Children-Cope.pdf

http://www.copmi.net.au/parents/helping-my-child-and-family/talking-about-mental-illness

https://www.nccn.org/patients/resources/life_with_cancer/talk_to_children.aspx

https://www.accu-chek.com/life/explaining-diabetes-to-your-children

http://talkaboutit.org/how-talk-your-kids-about-your-epilepsy-roger-cross-wendy-miller-phd-rn

https://www.webmd.com/rheumatoid-arthritis/features/ra-explaining-pain#1

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

*Photo of the author & her son at an airshow, Myrtle Beach AFB, 1992.

 

 

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