⭐️The Hidden Costs of ME/CFS: The Impact on Work, Family, and Life⭐️
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- Опубликовано: 5 сен 2024
- Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a complex and debilitating illness that affects millions of people worldwide. Despite being widely recognized by the medical community, the true costs of living with ME/CFS can often be hidden and overlooked. Some of the hidden costs of ME/CFS include:
Reduced Income: Many people with ME/CFS are unable to work or have to reduce their work hours due to the severity of their symptoms. This can result in a significant reduction in income, which can be especially challenging for those who are unable to access disability benefits.
Increased Healthcare Costs: The ongoing medical expenses associated with ME/CFS can be substantial, including doctor's appointments, medications, and treatments. Some people with ME/CFS also require specialized care and equipment, which can add to the cost of their healthcare.
Home Modifications: Some people with ME/CFS require modifications to their home environment to accommodate their needs, such as installing ramps, making adjustments to lighting, or adding specialized equipment. These modifications can be expensive and may not be covered by insurance.
Lost Opportunities: ME/CFS can impact a person's ability to participate in social and recreational activities, as well as limit their ability to travel. This can result in lost opportunities for personal and professional growth, as well as decreased quality of life.
Caregiver Costs: Many people with ME/CFS require support from family members or friends to help them with day-to-day tasks and activities. This can result in additional costs for caregivers, such as lost wages, travel expenses, and increased stress levels.
The social and financial and medical stress makes you SO depressed and hopeless and probably sick most of all.
My husband had to give up work to look after me and my son. We had alot of savings but they are running out. I'm 6 years into it now. I missed out on being with my son age 3 and 4. When I look at photos it hurts so much. He saw me lying in bed crying. I remember how horrendous I felt back then. It truelly is the hardest battle. It's exhausting explaining it and the many symptoms. You might have the odd good day where you get out and look fine then in the house for weeks unable to do much. The lack of understanding is torture. It is a cruel illness.
The ignorance was (and still is), strong with family, so much so that I had to distance and even end some of those relationships (including most friendships). Sad thing is, even after being sick with this condition for almost 18 years now, I could still remove a few more people from my life.
I’m so grateful for this video. Especially acknowledgment of the mourning and grief we feel over the loss of so much. Unfortunately I think too often this grief is misconstrued by others as depression or self pity.
They do not comprehend the overwhelming struggle we put forth to cope not only with a debilitating invisible illness but we are often judged harshly by what we can no longer do while we are grieving the loss of those very things. It’s a double insult.
Also it should be mentioned that due to the shame of being sick and misunderstood causes many of us with ME to be guilted into pushing ourselves far beyond our limits.
I’ve also been accused of psychologically “ setting myself up to be sick” by planning to not overdo, turning down requests, taking care of my diet etc. whereas with other diseases these self care precautions are admired and encouraged.
@Penelope …. Amen. Perfectly stated !
gratitude dude for encapsulating the hidden costs of an already invisible disease. ive found it so hard developing the vocabulary, finding the analogies, and retaining the energy to express these truths to friends and famil, and even then, when i do, the shame and stress and cog fog present in abundance and i wonder afterwards whether it was even worth the trouble because, without a solid reference, point non-mecfs folk can never truly empathise or understand even a fractional proportion of our lived experience... but i guess i'd been trying to find common ground in the symptoms and sensations - which are, by their nature, enigmatic - and so was inadvertantly set up to fail. this video will be such a valuable resource for practically everyone in our community 🙏💙
Im very happy to hear its helpful! Thanks
@@fight4me747 God bless you. I thank Him for me to come to find your channel!
Hi, Johnny! You covered it all. I am disability retired through the school system, so I have insurance, although the doctors that finally diagnosed and treated me, are not on my insurance plan, so I pay out of pocket. I am single w no kids and live with myself. Having M.E./CFS has set my life on a different course, but I am resolved to create a beautiful, happy, peaceful existence for myself! Sending love to you all!❤❤❤
What a great mindset. Cheers
@@fight4me747 Thank you, but It took me years to get here!
Your videos are so helpful, not only in validating what we’re dealing with but also in explaining to others. I have difficulty articulating, something that you do so well so I really appreciate the thought, time and energy you put in to making these. Thank you 🙏🏼 😊💕
Thank you so much. Very eloquently and succinctly worded. All of what you have said I have experienced, and it is very important that our communities understand the toll this illness takes.
Great video with real solid advice. I’m a new Sub, so happy to have found you today. When you talked about families breaking up, that really hit home. Not one of my family members understands what I go through day in and day out. I’ve been called lazy, unsociable, weird, and the latest is my father accusing me of doing drugs because I’m always sleeping, in bed, and I isolate. I live alone. My neighbors don’t understand. My most supportive friend told me I should get off my @ss and make a plan for my future. Everything you mention in this video is spot on, and it’s so refreshing to listen to someone with common sense. Thank you.
I can't stop ! I have to keep working luckily isn't that heavy work.....
Thank you again. I love the sound of your voice. You're very easy to listen to.
Thank you!!
You have the best videos on our illness! They are exactly what we go through as you say emotionally, physically etc. We want our voice to be heard and you are our voice. Personally I think I had bouts of fatigue as a child where I would pretend I was feeling unwell with say a sore tummy but really I was fatigued. Now, I can't work and I had a fantastic job, my financial status is that I have had to cash in my pension to pay off my mortgage, I have no friends anymore but I am lucky my family are very kind and understanding as they know the person I was and how I am now and nobody would make that up! I had a very difficult childhood and was diagnosed with C PTSD years ago and my GP thinks my illnesses are probably due to childhood trauma. Thank you for being our voice. Take care xxxxx
Thank you Irene.
I think that people who we are close to don’t realize how much we suffer in silence especially emotionally. All the things we leave unsaid. I have been struggling for a few weeks now with emotions that I’m trying to understand. I feel that my fight or flight is always on and I can’t turn it off. My body is in such a survival mode that switch stays on. It leaves me with feelings of fear, sometimes I think someone is going to hurt me (even though I’m perfectly safe),sometimes I want to fight. It leaves me with symptoms of panic attacks. My doctor wants me to see a therapist, my mom wonders if I need to go on anxiety medication. Though I’m trying to get them to understand, I feel these symptoms aren’t emotion affecting me physically, but physical symptoms (fight or flight) affecting my emotions. I think something is going on with hormones or something chemically in my body and it’s causing me to emotionally lose it. I have never struggled with anxiety and feel I still don’t. Has anyone else struggled with similar symptoms? I need advice!😵💫😂
You said it🙏
@@visionvixxen Yes! I talked to my doctor about it,and she recommended I do the Dutch Test. It’s a month long test that tests hormones and such. I just completed it and sent it back so waiting for the results. Hoping to get answers on why my fight or flight is going haywire. If you are struggling with emotions that you feel are from physical symptoms and not the opposite, I recommend looking into it.😊
I found a fantastic chiropractor who has learned how to get the "fight or flight" to turn off, and to train the brain to not go into "fight or flight" from normal everyday experiences/movements.
So far he has cleared me from going into "fight or flight" for the following:
Bright light
EMF's
Sitting positions
Sleeping positions
Specific supplements
And more...
Yes, even certain sleeping positions used to cause my body to go into "fight or flight."
After nearly 20 years, I can actually get a restful night's sleep!!!!!
(At my worst, I used to only be albe to sleep about 2 out of every 24 hours).
Dr. Wentworth Advanced Chiropractic in Greenville, SC.
@@cherylallis2458 Thanks for the info. I’m going to start going to Dr. Susan Levine who is in New York City. I have a FaceTime appointment with her next week. I’m hoping she can help me turn it off. To anyone else it looks like I’m having a panic attack but it what I’m dealing with isn’t mainly from emotion, it’s triggered from certain things especially when I’m overwhelmed. I can’t turn it off, things like breathing exercises don’t do anything, I just have to wait it out till it passes. Because my fight/flight is always on my mind never shuts off so sleep is hardly ever restful.
Back when I got ME, the medical system was worse than worthless. It was an MD's "treatment" that caused me to move quickly to severe ME.
That was the Best Ever Video Ever!🎇
GREAT fuel to send out to those trying to understand it! Thanks as always. 🙏
My pleasure!
I can relate to everything you said in this video. Thank you so much for being an amazing advocate for us all. #hero
Thank you for making these videos
My pleasure!
The world couldn't handle me with out me/cfs.😆😁😭
Haha love this xxxxx
❤❤❤
Thank you for this!! ❤
My pleasure
good stuff, thanks....
or you just rot in your home because the doctors ignore you. losing all the reasons to stay
Unfortunately i can't hear 👂anything that is being said with/without headphones.Perhaps because it's coming from across the pond!
Sorry tot hear that. Have you tried raising the volume in the youtube settings? Plays loud and clear for me.
Sound is so very 🔅 low
Hello, try raising the volume within youtube.
🙌 'Promosm'
Thank you for making these videos
My pleasure! Thanks for watching
Are you aware of the connection between stachybotrys mold & CFS? OR bad locations? Environment playing a HUGE role in this illness?
@@oralie.bordeaux Yes. Our bodies have a very hard time dealing with things in our environment.
I have found that focusing on treatments that help the body learn to respond properly to these things really helps a lot. It's taken me nearly 20 years to see this, but the approach is helping me so much.
One of those treatments is electronic lymph massage treatments.
@@cherylallis2458 poison is poison. You can't think or retrain yourself out of reacting to it.
This is WAY bigger than a mind or body issue. This is an environmental issue. The real environmental issue the world should be focused on.