A Little Rest …

 

Sometimes, I am amazed by the amount of energy that I have. Other times, it amazes me how tired I can get. Totally drained. At age 59, with three Chronic illnesses, fatigue happens. I could blame my age, or my health. From the rational standpoint, it’s probably a combination of both. But, unfortunately, I’m not alone. Approximately 150M Americans live with at least one Chronic illness. Millions, like me, live with multiples. And fatigue is a very real … very stubborn … part of most Chronic illnesses. Do you fight yours? Or do you listen to your body and rest? 

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When you have fatigue from a Chronic illness, it changes a lot of things about your life — even the way you see yourself. You remember the person you were, before diagnosis, i.e. running 5-10 miles each day, whitewater rafting, chaperoning field-trips, maintaining a hectic schedule at work and at home, playing tennis, no pain, no limited mobility, etc. And then you look in the mirror at the person you are, today. Better, in some ways. Worse, in others. It’s frustrating.

Now, when you have energy, you savor it like a fine wine. Because, unlike your old self, you can’t take such things for granted. You know that these energy bursts, come and go. You even prioritize what you will use your energy on. Because, we all know that there are limits. If that isn’t frustrating enough, your fatigue also changes how you relate with others.

You find yourself accepting fewer invitations and not returning phone calls. Instead of posting your selfie enjoying a night out with friends, you look at the ones posted by others. You struggle to keep up with home … work … the kids … friends … everything. You look for a way to manage it all. Then, when things get difficult, you beat yourself up about that. It’s a vicious circle.

First and foremost, let go of the person you once were. Or should I say the person you thought you were? Let’s be honest, here … even before diagnosis … you had other problems. We all did. None of us are, or ever were, super beings. It’s time to focus and to love the person that you are, right now. 

Next, you really need to learn how to say “no” and even delegate. It’s better to do a few things well, than to do several mediocre. No company pays anyone enough to be a one-person act. Work, like home, is a team-effort. Co-workers need to do their part. Personal days are just that — personal. Use them, wisely. Kids can actually do laundry and clean the house. Spouses can cook dinner, run errands, etc. This holds true for husbands or wives. The new you has more time and flexibility. So, if it takes longer to get ready, you have that time. The new you isn’t volunteering on every committee, at every fund-raiser, etc. Hence, there is actually time for a nap on Saturday afternoon. And there’s no sin in taking one!

A very wise man (I’m talking about you Dr. Steve) once told me that if my body didn’t need rest, then I wouldn’t be tired. Though I was skeptical at first, I’ve found he was right. Yes, you can have drowsiness from medications. But that’s not the same thing. When fatigue sets in, it’s like your cellphone trying to function with its last smidgen of power. Nothing works too well; does it? And a nap is to your body like a re-charged battery is to your cellphone — vitally important! 

Some chronically ill patients even have trouble sleeping. If this is you, please consult your doctor. Pain can interfere with your sleep. Depression can, too. Usually, once you gain adequate control of your pain, you can rest. If sleep is still a problem, there are many non-medicinal approaches to help you, i.e. relaxation training, cognitive behavioral therapy, biofeedback, etc. Exercise is another way to ultimately relax and get your needed rest. Most chronically ill patients need and can do low-impact exercises, i.e. walking, swimming, Tai Chi, Yoga, Pilates, etc. Believe it or not, even Ballroom Dancing qualifies. You could actually combine time with your better half and exercise, into something special for the two of you to share. Healthy and sexy? That’s a win-win. If sleep still eludes you, a prescription may be needed. But realize that you have options. Explore them.

Last, but not least, never underestimate the power of a good recliner. It doesn’t have to be an expensive model. No home make-over is required. What most people do not realize is that a recliner (when reclined) relieves pressure and pain to the body much like a hospital-bed. And that alone may provide the rest you are desperately needing. So, c’mon. Stop making excuses. It’s time to be good to yourself. Find a quiet spot … relax … feel the stress fade away … and rest. You need it. We all do.

Now, shhhh … close your eyes. Heal.

 

Reference Links:

https://www.psychologytoday.com/us/blog/chronically-me/201804/chronic-illness-fatigue

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

https://www.webmd.com/pain-management/coping-strategies_for-chronic-illness#1

https://www.webmd.com/sleep-disorders/sleep-disorders-sleep-and-chronic-illness

https://www.sleepfoundation.org/articles/how-does-exercise-help-those-chronic-insomnia

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-and-chronic-disease/art-20046049

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

*Photo by Zohre Nemati on Unsplash

Taking Care Of The Caregiver

When a person is diagnosed with a Chronic illness, focus naturally centers on the patient. This is necessary, for proper treatment and disease management. While most patients have a Support System (or should for best results), many will at some point require a caregiver. This individual, whoever he or she may be, is an essential part of that patient’s life and a vital part of their disease management. They are also, often times, neglected. And that’s an unacceptable risk. Which is why it is imperative to take care of the caregiver …

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Make no mistake, there is nothing easy about the task. Care-giving can be very difficult. It’s mentally, physically and emotionally challenging. I have answered the call, twice in my life. At age 30, I was my father’s caregiver when he was diagnosed with Stage 4 Lung cancer. At 48, I was my mother’s caregiver when she was diagnosed with a very rare cancer (Non-Hodgkin’s Lymphoma Primary to the Bone). Both were extremely different experiences, despite the fact that both of my parents had cancer. Never think, for a moment, that previous experience prepares you to be a caregiver. It does not. Each patient is unique. And each will require different levels of care. When I reflect back on both of my care-giving experiences, I am reminded of a quote from the Charles Dickens novel A Tale Of Two Cities“It was the best of times, it was the worst of times.” By that, I mean that there were special moments that I will forever hold dear in memory. But there were also times that were heart-wrenching, scary, overwhelming and physically/mentally exhausting. That is care-giving, in a nutshell. Yet, if I had to make the decision again, I would do so. But that’s just me. The responsibility isn’t for everyone. And there is no sin in admitting that. 

If you are a caregiver, or considering the duty, take a moment to reflect upon the demands of the position. And by all means, take preventative action for your own health. No caregiver, regardless of age, is immune to stress … fatigue … or depression. In fact, I would wager that a caregiver is more vulnerable. Why? Because a caregiver naturally puts his/her needs, on the back-burner. As a caregiver, the priority must be the patient that he/she is caring for. So, caregivers often neglect what their bodies need. But if you allow your own health to decline, who is that really helping?

When caring for my dad, his Hospice nurse gave me some priceless advice, “Do something for yourself, because he needs you.” Nancy was so right. It can be once a day, for 30-60 minutes. Or possibly, it’s just once a week. It doesn’t matter which you choose. If you are a caregiver, do something for you, i.e. a massage, a yoga class, a walk around the block, a Bible study, an art class, etc. Indulging in a little “Me Time” may feel a bit selfish, at first. Yet it is vital to keeping you healthy, relaxed and mentally sharp. So, get out and indulge yourself. Then, you can consider these additional tips:

  1. Get some exercise. Even in regular, small increments, it can boost your energy level. Exercise also reduces stress, helps you maintain a healthy weight, etc.
  2. Eat healthy. This too will give you more energy. Eating healthy can help prevent other health problems, too. Also remember to snack healthy.
  3. Don’t Forget How To Laugh. Laughter is good medicine. Try to find some humor in your day-to-day experience as a caregiver. Share a laugh with the loved one in your care (he/she needs joy too)!
  4. Watch-out for depression. The demands placed on you as a caregiver can be difficult and stressful. Stay vigilant. Talk to your doctor, if you think you are experiencing symptoms, i.e. sad, anxious, anger, feeling helpless, irritable, weight loss or gain, sleep issues, difficulty concentrating, etc.
  5. Takin’ Care of Business. Remember that retro phrase? Well, it’s good practice. Balance your checkbook. Pay bills. Work when you need to. Save for a special outing, anniversary, or trip. It’s good for both of you!
  6. Keep Your Dr. appointments. If you’re sick, you won’t be able to do what your loved one needs. So, visit your doctor & dentist regularly. Get your lab-work, or flu shot. Your good health is the fuel that keeps this care-giving engine running!
  7. Optimism is key. Refresh your mind, every day. Yes, you have limitations. We all do. So, let go of that guilt. Acknowledge the job that you’re doing. It’s special and important. Like other things, care-giving has a learning-curve. You will get there.
  8. Stay connected. Use the phone, internet, newspaper, etc. But, by all means, stay connected to the outside world & what is happening around you.

Last, but not least, if you need help … ask for it! Call a family-member or friend and ask for some assistance. Talk to your doctor and your loved one. If the patient’s level of care becomes too extensive, it could be time to consider hiring a professional caregiver. If you need to work, consider utilizing Adult Day-care options in your area. Just remember … you aren’t alone. There are many who are willing to offer ideas and alternatives. Don’t be afraid to seek their advice. Take care of your loved one — and you!

 

 

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.cancer.net/coping-with-cancer/caring-loved-one/tips-being-successful-caregiver

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

https://www.heart.org/en/health-topics/caregiver-support/top-10-caregiver-tips-for-staying-healthy-and-active

Adult Day Care Services

https://www.rwjf.org/en/library/articles-and-news/2003/04/the-role-of-adult-day-services.html

https://www.webmd.com/depression/guide/depression-symptoms-causes#1

*Photo by James Hose, Jr., on Unsplash

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

Heat, Meds & Chronic Illness … Oh, my!

Being diagnosed with a Chronic illness isn’t the end of the world. But it does change your world rather quickly. Most patients will tell you that finding the right doctor and medication/s were difficult. And adjusting to those medications? Honey, that’s a completely different story. Still, it’s a must-do. So, instead of wallowing in denial, play it safe. Ask questions. Read labels. Use commonsense. And avoid those medical setbacks. You don’t need the hassle.

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In the summer, we can get very hot weather. It’s the nature of the season. Even the flowers in my garden are praying for a little relief! How that heat can negatively effect you is important. Hot weather puts added stress on your body.

If you have a Chronic illness, you’ve probably been instructed to do some form of exercise. And kudos to you, if you are! If your exercise can be done indoors, i.e. Pilates, Tai Chi, yoga, swimming, etc., heat is not a concern. You are utilizing a climate-controlled environment. Just don’t overdo it. Always respect your body’s limits. For those who are exercising outdoors:

  • Monitor the weather. Exercise in the coolest times of the day & avoid that mid-day sun.
  • Dress appropriately. Lightweight clothing helps sweat evaporate & keeps you cooler.
  • Wear Sunscreen.
  • Drink plenty of fluids. Dehydration is a key factor in heat-related illnesses.
  • Have a Plan B. When the weather is flirting with triple digits (or the heat index is already there), find an indoor alternative. It will come in handy, in the worst of winter too!

Next, you must respect your medical condition & medications. Many can increase your risk of a heat-related issue, i.e. Heart disease, Obesity, Lupus, Graves disease, Lung disease, Kidney disease, Multiple Sclerosis, Epilepsy, Hypertension, Diabetes, etc. Medications usually have warnings right on the label. So, by all means, read yours. If in doubt, talk to your doctor or pharmacist.

Yes, you have a Chronic illness. Approximately, 133M Americans do. But you still have a life; remember? Your illness shouldn’t define you. It’s just a part of who you are. So, learn to work with it. Manage it. Enjoy life. Because you still have a lot of living to do. And because it’s summer … glorious, fun-filled summer … with longer days … vacations … explorations … weddings … cook-outs … weekend plans … beautiful, sunny mornings … and romantic starry nights. Don’t miss a thing!

 

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise/art-20048167

https://www.cdc.gov/disasters/extremeheat/medical.html

https://www.medicalnewstoday.com/articles/325232.php

https://www.goodrx.com/blog/avoid-the-sun-if-you-take-these-drugs/

https://www.webmd.com/fitness-exercise/heat-exhaustion#2

https://www.webmd.com/skin-problems-and-treatments/sun-sensitizing-drugs#1

*Photo by Sarah Cervantes on Unsplash