Category: chronic illness

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.

Northern Lights

Serenity For Spoonies #22

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.

clouds and mountain
Clouds boiling down the mountain. Do you think they will reach the waterfall? Photo credit to Martin Brechtl.

promentory
This shot reminds me of the BBC program Time Team when they went to Wales. Photo credit to Marc Zimmer.

Northern Lights
The Northern Lights are occasionally visible from my home but they’re never extravagant like this shot by Luke Stackpoole.

rock and sea

Serenity For Spoonies #21

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.

 

golden sun
Is this beautiful golden sun the result of PhotoShop or smog? Photo credit to Nathan Dumlao.

 

rock and sea
An interesting rock formation. What mystical animal do you see? Photo credit to Matt Holland.

 

lakeshore
Are those birds on the left side of this photo taken by Martin Holverda?

 

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”.

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mountain

Serenity For Spoonies #19

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.

clouds
Beautiful clouds. Photo credit to Vidar Nordli Mathisen.

mountain
Another gorgeous reflection. Photo credit to Uros Jovicic.

sea shore sunset
Photo-shopped seashore image taken by Rafael Cerqueira.