Category: chronic illness

hand reaching out of water

Looking For More Income Online

Many of my readers like the Serenity For Spoonies series of gorgeous peaceful scenery that I post from time to time. I like finding and posting them, too. 

Fortunately, I can schedule these picture posts to appear even when I’m not able to do anything else. Like during the past few weeks when I crashed harder than usual.

Like many of us with ME or other fatiguing illnesses such as MS or heart failure, I’m accustomed to spending a day or even two recovering my energy stores after an exhausting day. But this most recent relapse (I prefer relapse to the official name of post-exertional malaise) kept me in bed or lounging in the recliner longer than I experienced in quite a long time.

woman-lying-in-bed

Fortunately, there are safety nets for people like us. For example, Medicaid can pay for prescriptions and in some states, there are waiver programs that will provide extra support for bathing, dressing, grocery shopping, etc.  Meals on Wheels is another program that will give us at least one meal a day at a reduced rate.

My years in public relations taught me to look for good things even when something appears not so good, so the silver lining to this most recent relapse was that I had a chance to step back and think about this blog.

Although I’m still not settled on a specific way forward, I do want to incorporate some of the things I’m learning about making extra money.

We all know or can imagine how difficult it can be when we have no source of income from a working spouse, parents or something else. Many of us live close to the edge with Social Security Disability as our only income.

However, even though I’m enrolled in a Medicaid community waiver program, I still get tired of counting pennies, shuffling the due dates of bills so I had funds in the bank when they came due, and basically running out of money before my next Social Security check came in. 

dollar-sign

Obviously, if the government declares you disabled you cannot work a 40-hour week any longer. For many of us, even part-time work is too strenuous. This leaves working from home as about the only option open to someone who is disabled with a chronic illness.

So I started looking for ways people are making money by working at home. Some are too strenuous and/or impractical for people like me who suffer from brain fog, for example answering customer service calls. Others take too much time for little return, like responding to surveys.

woman-holding-fan-of-money

I kept finding sites that promised thousands of dollars each month–even millions each year–making money online. Many of these programs are basically multi-level marketing in which you set up a website or websites that entice others to sign up for the expensive program in which you enrolled.

So I fell for the marketing and signed up with a young man whose main promotion was to get his followers excited about fancy expensive cars and a digital nomad lifestyle. He frequently posted videos showing him and his young child in various spectacular places around the world. The promise was that you, too, could be doing this.

expensive-car

His way was a hard-driving, hard-selling method of getting you to sign up and then getting others to do the same thing. You made money from the initial signup and then every month your people remained in the program. He offered free training on how to make videos that would go viral and how to write sales copy that would get people to buy things you recommend. 

This was just not for me nor was it appropriate for someone who often has to step back for several days and not do any online work. He offered a money back guarantee, so I wrote to say the program was just not for me and I wanted a refund.

However, I did not qualify for a refund in his eyes because I didn’t stay in the program and do everything as he laid it out. I finally had to threaten to go public and say John Smith (not his real name) was stiffing a grandmother before he grudgingly refunded my money.

My next foray into online marketing was through a young woman who promised income and location freedom with blogging. That sounded great since I already had a blog.

Sue Smith (not her real name) had a largish following of women and at the time I was involved she had just moved overseas using her blog as her sole source of income.

There were examples galore on her website of how to develop what is called a personal brand. In other words, this woman used photos and stories of herself in different locales as the subject of blogs about the place she was in, where she ate and the clothes she wore.

Sue (not her name) was involved every day with members of her group and offered tons of positive reinforcement and support. Almost a polar opposite to the first guy.

She succeeded by getting sponsors for these blogs, like a clothing company, a restaurant or a tourism department. Of course, she also promoted getting others to sign up using a referral code that was unique to you. 

I learned quite a bit about making pretty websites and posts, but this still was too much work. I also didn’t like the constant self-promotion. Her focus on the personal brand just didn’t fit with my lifestyle.

After all, who in their right mind wants to follow someone who can’t leave the house more than a couple hours a week and spends the remainder of the time resting?

My next foray got me into the world of selling on Amazon. That is a whole different story that I will tackle in the next post.

What do you think of my experiences?

Have you tried any work at home schemes? (I’m using schemes like the British do and not with any connotations of something risky or underhanded as we Americans often think of a scheme.)

water in rapids

Serenity For Spoonies #23

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.

water in rapids
Rushing water boiling through rocks. Photo credit to Landon Arnold.

 

seashore
Is that a monastery at the seashore? Photo credit to Keith Bremner.
water fall
Keeping to the water flow theme of this post, here’s a gorgeous shot by Keanan Brown.
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.