Author: Ellie Strand

Disabled/retired with ME/CFS, former nurse practitioner, ad/PR exec, journalist. Enjoy gardening, traditional cooking, ME/CFS advocacy and research.
Tibetan Buddhist

Awful truth about ME

The Awful Truth About ME

Myalgic Encephalomyelitis (ME) is a body-wide disease affecting the nervous and immune systems that is characterized by a severe worsening of symptoms after minimal exertion. It affects approximately 2.5 million people in the United States and an estimated 20 million worldwide.

Although research has shown that ME is about two to four times more likely to occur in women than men, the disease strikes people from every age, racial, ethnic, and socioeconomic group.

This awful, devastating, life-crushing and debilitating disease is largely ignored by the medical establishment in the US and other countries and has been for decades. It is trivialized with the name Chronic Fatigue Syndrome (CFS) in the US–as if a good night’s sleep is all that is needed.

young woman looking out a window  holding a cup
More women than men have ME but the disease can strike anyone from school-age to retirement. Most people with ME are in their prime productive years.

Many Doctors Believe ME Is “All In The Imagination”

The dismissive name, chronic fatigue syndrome, contributes to many doctors believing it is a psychosomatic problem (all in your head) or due to deconditioning. To think someone would fake the debilitating symptoms and bone-crushing fatigue of ME is simply beyond what anyone who has the disease can imagine!

Until early in 2018, the Centers for Disease Control (CDC) recommended counseling and an exercise program as the treatment! While counseling may be helpful in coming to terms with the loss of a career, a parental role and a future, exercise with no accommodation for symptoms is the absolute worst thing for someone with ME. 

The disease arises after someone–adult or child–does not recover from a flu-like illness, Epstein-Barr Virus, Mononucleosis, any of numerous herpes viruses, Q fever, or other infections. Rarely, ME has been triggered by environmental toxins, getting a vaccination, or surviving a major trauma.

Regardless of the onset, our health is never the same. People with ME experience numerous symptoms and severity which fluctuate day to day, week to week, month to month, year to year and decade to decade.

Although privately funded research studies are finding diagnostic clues called biomarkers, diagnosis is still made based on excluding other diseases and illnesses.

Feeling Like You Have The Flu

young woman looking window cup
People with ME experience body aches, digestive problems, and unrelenting fatigue that is more powerful than anything experienced before the illness.

In most cases, a person reports feeling exhausted most or all of the time, plus having problems concentrating and carrying out daily activities. Most people also report symptoms such as unrefreshing sleep, frequent sore throats, fevers, tender lymph nodes, diffuse pain, muscle weakness, headaches of a new severity, type or pattern and joint pain.

Further, these symptoms are not relieved by a good night’s sleep. The burden this places on people often results in reducing or eliminating previous levels of job-related, educational, social and personal activities. Approximately a quarter of all people with ME are homebound or bedridden. Many use wheelchairs to conserve energy or because they do not have enough energy or stamina to walk more than a few steps.

The disease can last for 30 years or longer. Very few people recover. Sometimes ME is mild enough to allow working part-time. Some people will have a relapse, usually due to overexertion or stress, and they will come back to a new lower baseline of function. Others have a more progressive pattern of slow decline. A small percentage are so sensitized to external stimuli that they must remain in a dark, silent room.

People With ME Have A Lower Quality Of Life

A 2018 study comparing people with ME and those with MS to healthy controls found that the ME group experience a greater impact of their disease on life functioning than those with MS. Additionally, researchers found that people with ME are more likely to be unemployed or only able to work part-time than participants in the other two study groups.

Despite there being twice as many people with ME in the US as have MS (multiple sclerosis), ME receives only about $2/person in research funding while MS gets about $235/person. HIV/AIDS receives $2,500/person in federal medical research funding. (These figures are based on FY2015 data.) MS is used as a comparison because it also is an illness with a primary symptom of fatigue and involves significant nervous system damage.

Clearly, millions of people are suffering needlessly.

These graphs show how little federal research funding is allocated to ME/CFS and how great our disease burden is compared to other illness.

Many thanks to #MEAction.net, Solve ME/CFS, and ME-Pedia.org for the material used on this site.

What is your own experience with ME? Can you add to this post? Let me know below.

Please Support ME/CFS Research Fundraising Campaign

A few weeks ago I had a brainstorm. Why not sell Fair Trade coffee through a website with all profits going to fund medical studies and raise awareness? After some research and pushing myself to exhaustion, I bought a domain and built a website. Now I need funding.
With your support, I will have enough to hire a
graphic artist and purchase the initial stock of coffee. I’m looking at being able to ship coffee to donors this fall and have sales going strong during the holidays.

The intro to this Kickstarter campaign says it all. With your help, I can raise funds for research into my disease, ME. Please take a look and do what you can. If it’s not possible for anything monetarily, then share the campaign with your friends and family. ALL PROFITS WILL GO TO RESEARCH AND AWARENESS.

KICKSTARTER.COM
With your help, I will start a private label coffee company, MyCoffee4ME.com, to raise funds & increase awareness for ME/CFS.
sun breaking thru clouds

Serenity For Spoonies #20

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

sunrise
A sunrise as opposed to the usual sunsets. Photo credit to Wes Hicks.

 

sunset
I think the stars were added to this sunset. What about you? Photo credit to Owen Woodhouse.

sun breaking thru clouds
When I was a small child I thought sun breaking through clouds was God looking down on us. Photo credit to Michael Petersen.

The IoT Device Disabled People Are Waiting For Is Here–On Sale!

The Internet of Things (IoT) already is making life easier for tech-savvy folks with disposable income. However, many of the devices you can set from a smartphone aren’t always useful for those of us who are home all day. The IoT just wasn’t practical for many people with chronic illnesses–until now.

Amazon has developed a hands-free, voice-activated device disabled woman in wheelchairthat does just about everything someone who is confined to bed or a wheelchair could want.

The Echo Show is a great idea for someone who is disabled, has a fatiguing illness or is otherwise unable to use their hands. I do not own one of these devices, but I’m seriously considering buying it next Monday when Amazon has its Prime Day sales.

Here’s why I think this would be great for anyone who is disabled. With the Echo Show, in no particular order of importance, you can:

  • Watch Amazon Video content
  • See music lyrics on-screen with Amazon Music. Just ask to play a song, artist or genre, and stream over Wi-Fi
  • Play music simultaneously across Echo devices with multi-room music (Bluetooth not supported)
  • View security cameras. Ask Alexa to show the front door or monitor another room with compatible cameras from Amazon and others
  • See your photos
  • Get weather forecasts
  • Just talk to make to-do and shopping lists
  • Browse and listen to Audible audiobooks
  • Call almost anyone hands-free
  • Make video calls to family and friends with an Echo Spot, Echo Show, or the Alexa App
  • Instantly connect to other Echo devices around your home
  • Stream music on Pandora, Spotify, TuneIn, iHeartRadio, and more
  • Turn on lights or the TV, set thermostats, control Amazon Video on Fire TV, and more with WeMo, Philips Hue, Sony, ecobee, and other compatible smart home devices

Plus, Echo Show will get smarter and be adding new features, plus thousands of skills like Uber, Allrecipes, CNN, and more.

All hands-free—just ask the device.

The Echo Show has powerful, room-filling speakers with Dolby processing for crisp vocals and extended bass response. With eight microphones, beamforming technology, and noise cancellation, Echo Show hears you from any direction—even while music is playing.

FLASH: we don’t have to wait for Prime Day since they are on sale now!

I get a small affiliate fee if you purchase after clicking the ad.

Your loved one is ready for discharge–but are you?

Are you ready for your loved one to come home from the hospital or rehab facility?

Here are seven things to consider before the big day.

Equipment: Will you need special medical equipment, called DME (durable medical equipment) like a hospital bed, oxygen, a commode, toilet seat riser and grab bars, a bath chair, bathroom handrails, a hand-held shower attachment, transfer aids, and mobility aids like a quad cane, or a walker? Ask the nurses who give the daily care what you will need at home and have them arrange it before the homecoming. Make sure it is all ready to go and in place on the discharge day. Oxygen canisters can be kept outdoors even in the hottest/coldest climates, but the bulky oxygen generator has to be plugged in somewhere inside the house.

Routines: what changes to the daily schedule will be needed to accommodate rehabilitation or comfort care? If you don’t already have one, get a large wall calendar where you can keep track of medical appointments whether coming to you or going to them. You should receive a list of all medications and times at discharge. Sometimes there are so many things at different times during the day and night that it will be easier if you make a chart. Then you can check off when pills, inhalers, and treatments are taken. Will you need to transform the living room into a bedroom for a short time?

Home Health nurses and aides: Be sure to talk with your doctor or nurse practitioner about ordering home health care. Physical therapy is often ordered for a short time, as well. In most cases, there will be at least one visit with a registered nurse to help you get things set up. He or she can also be a resource for any and all questions. The nurse can help develop that medication chart if you are confused about it, too. Also, a home health aide may be available to help with showering or bed baths. These decisions are dictated by Medicare/Medicaid and private insurance regulations, so each situation is unique.

Household chores: Finding the time and energy to house clean and take care of the yard or do snow removal will be much more difficult while you are a full-time caregiver. Consider hiring help either from one of the many home care agencies like Visiting Angels, Seniors At Home or Safe At Home that provide light housekeeping and personal care. Craigslist can also be a source for help, but don’t forget to ask friends and neighbors.

Safety: You may need to remove throw rugs, fasten down area rugs, install handrails on stairs, and generally remove clutter. Look carefully at anything that would interfere with a mobility aid like a walker or cane. If there will be oxygen, then a sign needs to be fastened to the front door warning there is no smoking in this house. This means no candles, either. Doorways may need to be widened if a wheelchair will be needed long-term.

Extra assistance: Someone who can pick up a prescription or get a few things at the grocery store for you will be invaluable. If you don’t have a support network close at hand, look into home delivery options.

Family Medical Leave/state programs: Medical leave is an option for people with full-time jobs that ensure the position will remain open while you take time out to care for a loved one. Talk with your human resources manager about eligibility. Some states have programs that will pay caregivers and provide funds to modify the home to accommodate medical needs. Call your county Aging, Disability Resource Center (ADRC) for information and help if your loved one is elderly or disabled.

Professional care managers are available in larger cities. For a fee, they will help with whatever is needed. Some of the areas where a care manager can assist are helping you plan and get to doctor’s appointments, helping navigate insurance and healthcare decisions, and communicating with your family and medical team. They can arrange for and schedule additional paid in-home help and set up a simplified medication regimen. Find them through a hospital or rehab facility, ADRC or use a search engine to “find care managers near me”.

Was this helpful? Tell me what you want to know.

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Ten Wound Care Techniques For Home Caregivers

Back when I was a home health nurse I loved the challenge of caring for wounds. Once I helped a Korean War veteran heal an open sore on his ankle bone he said had been there since he was frost-bitten in 1954! Another challenging wound was a man with a pressure ulcer (bedsore) whose white knobby tailbone could be clearly seen after I removed the dressing.

wound care
Proper wound care at home is a cornerstone of recovery.

Remember Christopher Reeve who portrayed Superman until his neck was broken in a horse riding accident? He died because of a bed sore. The cause of death was an adverse reaction to an antibiotic he was taking for sepsis caused by his pressure ulcer. This can simplistically be thought of as a blood infection. However, sepsis occurs when chemicals released into the bloodstream to fight an infection trigger inflammatory responses throughout the body. This inflammation can trigger a cascade of changes that can damage multiple organ systems, causing them to fail.

Although I love wounds, caring for open sores, whether caused by surgery, accident or sensation loss, is a major stressor for families and most (normal) people. Good wound care is a vital part of post-surgical recovery as well as keeping healthy and even alive. Proper wound care is necessary to prevent infection and to promote healing. 

What Causes Wounds?

Wounds occur when the skin is damaged because of injury. This may be the result of mechanical, chemical, electrical, thermal, or even nuclear sources.

skin tear classification
Skin tears are common in elderly people, as is the bruising caused by blood thinners.

Skin is damaged in different ways depending upon the mechanism of injury. In all cases, inflammation (redness) is one of the first signs of injury.

Wounds are classified into types:

Superficial wounds (on the top surface layer of skin) are caused by friction rubbing against a rough surface, even something seemingly smooth like a bed sheet. They are known as abrasions or skin tears.  

Additionally, many seniors take blood thinners like Coumadin® and/or low dose aspirin with resulting “bruises” where blood vessels leak into the tissue just under the skin. These obviously need protection from opening up and require prompt attention when they do.

Deep wounds, such as those following surgery, go through the skin into the underlying tissue, like muscle and fat layers. 

Puncture wounds, usually caused by a sharp object entering the skin, could be as minor as a needlestick to give an injection or draw blood, or deep as a stab wound from a knife or similar sharp object.

Bites, whether human or animal, are classified as superficial or puncture wounds, depending on depth and size.

Pressure ulcers (bed sores) develop due to lack of blood supply to the skin. This is the result of chronic pressure on an area, especially over bones. This tissue compression causes a loss of blood supply to the area which increases skin breakdown. First inflammation and then sores develop when a person who is bedridden, sits for long hours in a wheelchair or has a cast pressing on the skin does not remove pressure from the area. Pressure ulcer prevention guidelines specify moving every 20 minutes to relieve compression.

Hospitals Discharge Patients ASAP

Hospitals are under tremendous insurance pressure to discharge patients as soon as possible after surgery. It’s a very confusing time for family caregivers with a discharge planner, a social worker and maybe even a wound care nurse all giving directions on the day of discharge. No wonder the many details involved in wound care are often forgotten or misremembered!

In most cases, if the wound is not considered complex, teaching is done at the time of discharge. A home health nurse will usually be assigned if the wound is complicated, such as performing wet-to-dry dressings several times each day. However, while a home care nurse keeps the patient as their primary concern, they are required to teach a family member–or a paid caregiver–how to change the dressing. Private insurance and Medicare/Medicaid will not pay for a nurse to stay in the home beyond a specified number of days after discharge.

skin layer graphic
A person who has lost sensation on the soles of the feet can easily develop an ulcer that is often difficult to heal.

In addition to surgical wounds, several other populations almost routinely (unfortunately) develop open sores that are specific to who they are. People who are unable to move in bed or in a chair easily often develop bed sores, also known as pressure ulcers. (Waaay back when I was just a nursing assistant, they were also known as decubitus ulcers.)  

Diabetics and other people with neuropathy can develop open sores in the areas with poor sensation, like feet and lower legs, due to not feeling an offending pebble in a shoe or a bump on the shin. Preventing more open sores is a vital part of home wound care.

Proper Wound Care Procedure

  1. If there is any pain or discomfort with dressing changes give the patient (I’m using patient as a stand-in for the wordier but politically correct terminology of “person with a wound”) pain medication about half an hour before starting. Medications can range all the way from acetaminophen (Tylenol®) to morphine. The nurse will be able to help you decide how much pain medication to give. If the wound is particularly worrisome for the patient, ask them to practice deep breathing relaxation exercises as you do the dressing change.
  2. Gather all the equipment you will need. This includes the tape and dressings needed, gauze squares, saline, ointments, wound packing material, clean or sterile gloves, and any other item(s) as instructed by the nurse. graphic of woundLay the materials on a clean surface in the order they will be used. Do not put dressing materials on the bed. This area is considered “dirty” from a wound care point of view–even if the sheets were just changed.
  3. WASH YOUR HANDS. Even when wearing gloves, it’s still important to cleanse your hands before and after touching a wound. Bacteria easily travel between your hands and the wound. You can use soap and water or an alcohol-based hand sanitizer. Scrubbing hands to the tune of the Alphabet Song (♪A, B, C, D, E, F, G♫) ensures you spend enough time to do it correctly.
  4. Follow the wound care written instructions given at the time of discharge.
  5. Additionally, remove the old dressing only after you have all supplies ready to go and the patient is medicated for pain or discomfort. Wounds need a warm and moist environment to heal. Healing is postponed if the wound is left open to the air for even a minute longer than necessary. 
  6. Slowly lift the corners or edges of the dressing or tape. If it sticks to the skin, dab the edges with an adhesive remover, a moistened gauze pad, or a moistened paper towel.
  7. Hold down the skin surrounding the bandaged area. Gently and slowly remove the tape or dressing. Lift the tape across the skin rather pulling away from the skin.
  8. Lift the edges of the dressing toward the center of the wound, then gently lift it from the wound. If the dressing sticks to the wound, soak it with saline solution to help loosen it.
  9. Carefully place the old dressing into a plastic trash bag (or grocery bag) and tie it closed. Put that bag into a second plastic bag and throw it away. You can put all the packaging from the new dressing in the bag, too.
  10. Remove the gloves and wash your hands again.

Challenges With Chronic Wounds

Any wound that doesn’t heal easily and remains open for weeks after most similar wounds heal is considered chronic. These are among the most difficult to successfully treat. Chronic wounds can occur when:

  • surgical wounds reopen or don’t heal completely
  • when the skin breaks down because there is too much pressure over a bony area, called a pressure ulcer or bedsore
  • there’s injury over a vein or artery in an area with poor circulation, called a venous or arterial ulcer
  • there is a loss of circulation and sensation due to diabetes, called a diabetic ulcer

Many hospitals have specialized wound care clinics staffed by nurses, nurse practitioners, and physicians. These health care providers are certified in wound care and work solely with these types of chronic wounds and ulcers. They have access to up-to-date research and technology, such as hyperbaric oxygen chambers and the latest wound care dressings. 

Remember, don’t forget to ask questions when the nurse is instructing you! Discharge planning has become an increasingly more important part of the hospitalization. Fines are levied for hospitals who have too many readmissions. And if the wound in question doesn’t require hospitalization, STILL don’t let the nurse get away until you have ALL your questions answered and concerns met.

I’d love to know what my readers thought of this. Was it too medical? Was it helpful? What else would you like to see me write about?