Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

August 8th, 2018: Understanding and Remembrance Day for Severe ME

Discussion in 'Phoenix Rising Articles' started by Jody, Aug 3, 2018.

  1. Jody

    Jody Senior Member

    Messages:
    4,371
    Likes:
    1,107
    Canada
    Jody submitted a new blog post:

    August 8th, 2018: Understanding and Remembrance Day for Severe ME

    Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.

    [​IMG]

    Can you read these words I've written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn't see or hear me. I'd be behind a closed door in my bed, trying to block out any sound or light.

    Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You'd be surprised how much work that can be when you're this ill. They are trying to live through the next second, minute, hour ... day ... year ... It takes everything they've got.

    I have never been this sick, more fortunate for me. But don't kid yourself. There are so many of these invalids holding on to the shreds and threads of survival. In fact, 25% of those with ME/CFS suffer from its most severe forms. Some are able to depend on a caregiver. Many more are on their own, toughing it out.

    Sophia Mirza had severe ME/CFS and died in 2005 when she was only 32 years old. Her birthday, August 8, was chosen as Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance by the 25% ME Group in 2013. On this day we honor Sophia and those others with ME/CFS who live alone in darkened and unnaturally quiet isolation.

    Sophia's story does not have a happy ending. She was removed by force from her home by doctors, social workers and the police. She was held against her will in a psychiatric facility, the victim of inappropriate treatment which only made her sicker. When Sophia died, her post-mortem pointed to widespread spinal cord inflammation.

    Sophia's story can be seen in the film "Voices from the Shadows."

    It may be hard to believe, but Sophia's mistreatment was not a unique set of circumstances. An untold number of people ill with ME/CFS experience obstacles, ignorance and coercion every day. They are vulnerable and can't protect themselves. Even those who are not being persecuted are living a half-life at best.

    Here are just a few of the things that many of our severely ill don't have access to:

    No visits with friends, or phone conversations. These communications that are so desperately needed to counter the isolation and loneliness are too often more than our severely ill can handle without a crash and setbacks that can last weeks, month, even years.

    No dental or medical care. Maybe they can't brush their own teeth ... or have anyone else to do it for them. No doctor visits. And who makes house calls anymore? While there are a very few of these stalwarts, there aren't nearly enough for our severely ill.

    Ironically, the absence of doctor visits may at times actually be a mixed blessing ... or curse? And that's because many of the ME community are often not treated well, and are sometimes even abused, by the medical community.

    I am not one of the severely ill segment, but I personally have been mistreated, insulted and dismissed by doctors who used to be courteous, even friendly. But when they couldn't help me, and didn't want to go to any kind of effort to learn how to help me, things turned ugly.

    Even after my family doctor retired four or five years ago, and I moved on to a kinder doctor, I feel wary and tense at the idea of making an appointment for anything.

    Any idea how long you can go without food? Hopefully you've never had to go down that road. But some of these dear souls have more than a passing familiarity. Some of them are starving.

    Think about it. If you can't get out of bed, if you don't have someone who comes in to care for you, if you don't have any money ... Just because most of us find this impossible to imagine, doesn't mean it doesn't happen every day all day, to people who are least able to withstand it. If you have no help and no resources, you do without. That is the answer to too many of the challenges that face the severely ill.

    And then there's the group who can afford some groceries but are so burdened with dietary issues that they're malnourished and sickened by some of the foods they eat. And each of them are on their own trying to work out what they can tolerate. This is just one of the many aspects of life that suffer because of the shocking lack of research and information available.

    So sick people are making themselves sicker eating foods that may fuel their disease and undermine their health. And yet those folks are more fortunate than many others who don't have money for food, or a way to get food into their homes.

    It's summer where I live, so my thoughts turn toward some of the things many healthy people take for granted this time of year:

    The severely ill are not going on vacations. And if they could ... what would look different? Trade one set of walls and bed sheets for another? And that's if they are able to tolerate sheets. Some can't.

    There are no summer treats. No walks on the beach. For many, walking is not even a possibility. No quick trips for ice cream or browsing through yard sales. (No money, no mobility, and will their bodies even tolerate ice cream?) No sitting on the patio or tending flowers.

    Picnicking? Don't be silly.

    Don't be misled by the fact that some in the ME/CFS ranks are able to work, or have family support, or on some form of assistance. They may be able to carry on a conversation with the occasional visitor or do their own shopping. Yet even these are living with limitations that the average person would be shocked by. But compared to our most severely ill this ME/CFS echelon is hale and hearty. Superman and Wonder Woman by comparison.

    It ain't easy being this invisible. When your life is on fire and in ruins you want someone to know about it, to be shocked by it, to be stirred to some kind of action.

    So please, think of us and our severely ill on August 8th. Better yet, think of us every day. If you know someone, especially among the 25% who is so extremely ill, do what you can. Offer practical help and emotional support in whatever form is possible. You will be filling a very big empty space for someone who is fragile and precious.

    Further Reading:

    August 8th – What is the one thing about suffering with severe ME that the world needs to know?

    http://phoenixrising.me/archives/25651

    August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

    http://phoenixrising.me/archives/28238

    Chronic Fatigue Syndrome Survivors: 10 Things We Won’t Be Doing This Summer

    http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-survivors-10-things-we-wont-be-doing-summe

    How to help someone with severe ME/CFS

    https://www.healthrising.org/forums/resources/how-to-help-someone-with-severe-me-cfs.204

    Severe ME Day: Understanding and Awareness

    http://www.meadvocacy.org/severe_me_day_understanding_and_awareness

    TAKE ACTION ON SEVERE ME DAY

    http://www.meaction.net/2016/08/08/take-action-on-severe-me-day

    Understanding and Remembrance Day for Severe ME is August 8

    http://www.empowher.com/chronic-fatigue-syndrome/content/understanding-and-remembrance-day-severe-me-august-8

    Severe ME Day – A time to reflect and to consider what we want to change | 08 August 2017

    http://www.meassociation.org.uk/2017/08/severe-me-day-a-time-to-reflect-and-to-consider-what-we-want-to-change-08-august-2017

    Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

    http://blog.ldifme.org/2013/08/understanding-remembrance-day-for.html
    Continue reading the Original Blog Post
     
    Last edited: Aug 3, 2018
  2. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,073
    Likes:
    24,974
    Albuquerque
    Thanks @Jody--great article!
     
  3. rwinsmom528

    rwinsmom528

    Messages:
    34
    Likes:
    19
    Thank you @Jody! I spent 5 years severely ill with nearly every symptom on the Canadian Consensus list, but I have had a couple of short-lived remissions and long relapses through the years since.

    Presently, I am housebound. POTS and pain are my main symptoms, POTS being the most disabling. I am working hard at preventing PEM.

    I am so grateful that I haven't been plagued with the misery of severe ME/CFS for a while now, but I also realize that health is a fragile thing and progress can be lost overnight.

    I have been blessed to have a supportive husband and supportive family. Without that support I believe I would still be bedbound.

    Many of the days I spent bedbound I would dream of getting better and being able to help others with ME/CFS who don't have that support. I would like to reach out to someone in my area who has severe or even moderate ME/CFS, but I don't know how to find them. Since I still cannot work or leave the house without provoking PEM, my help may be limited, but I believe I can find some way of helping.

    I tried to join the MEAction South Carolina facebook page but the page doesn't work. Does anyone know how I could find someone in my intimidate area who could use some help?
     
    Sushi likes this.
  4. Jody

    Jody Senior Member

    Messages:
    4,371
    Likes:
    1,107
    Canada
    You're welcome, rwinsmom528. That sounds like a terrible 5 years. I'm glad to hear things are as bad now.

    I can get in touch with a few people and see if there are other groups in South Carolina where you can make contact.

    Jody
     
    Sushi likes this.
  5. Jody

    Jody Senior Member

    Messages:
    4,371
    Likes:
    1,107
    Canada
    Sushi,

    I am happy to have the opportunity to do this.:)
     
    Sushi likes this.
  6. rwinsmom528

    rwinsmom528

    Messages:
    34
    Likes:
    19
    Thank you, Jody!
     
    Sushi likes this.
  7. Victoria

    Victoria Senior Member

    Messages:
    1,373
    Likes:
    315
    Melbourne, Australia
    Great article, Jody.
    You're so lucky to have a supportive husband and family.
     
  8. Jody

    Jody Senior Member

    Messages:
    4,371
    Likes:
    1,107
    Canada
    Ain't that the truth! Thanks Victoria.
     
  9. Rufous McKinney

    Rufous McKinney

    Messages:
    17
    Likes:
    15
    Thank you for speaking for those who hardly can. I am NOT a severe case, so I am grateful. But many things you describe have happened to me. The mistreatment by medical professionals is particularly appalling. For example, a dental surgeon dismissed my attempt to discuss my inflamed palette and pulp where my teeth reside and suggested I was lying. A dentist?!!!

    I can hardly tolerate this condition that classifies as moderate SEID/likely Eppstein Barr related. As a senior, its scary as my husband is eight years older than I, and I rely upon him to get me food and supplies and to drive. Endlessly trying to figure it out. Endlessly wondering why? Terribly isolating.
     
    Last edited by a moderator: Aug 18, 2018 at 7:19 PM
    Mel9 likes this.
  10. Jody

    Jody Senior Member

    Messages:
    4,371
    Likes:
    1,107
    Canada
    Rufous McKinney,

    I can relate to so much of what you've said. I am also not a severe case, though I have had my times of extreme dysfunction of many kinds. Your dentist sounds like a nightmare.

    I am 62, and my husband is 66. He is healthier than me most of the time (he has flareups of health issues different from mine) and he is usually the one who does the shopping, runs errands and drives me places that are more than a simple drive that I can manage. I try not to think about how I would be managing without him.

    The isolation is enormous and pervasive. I find that even now when I am pretty functional and have been for some time, my old friends fell away long ago and even the ones I've contacted after many years of separation are just not interested in getting together. And making new friends in my town has proven to be very difficult, in part because I am not involved in the community and haven't been for a long time. And in part it seems, ... perhaps I've forgotten how?

    I do pretty well with people online but in real life ... big vacancy. Even though I used to have lots of acquaintances and used to be busy with a lot of people. I hesitate to say I had lots of friends though before illness that is what I thought. But after illness I have learned, those people were not my friends. Because they left me.

    I can go down the rabbit hole with that one, forgetting how I got here. Wondering if I am too this or not enough that ... but I have to remind myself frequently that it's not that complicated after all. Despite my tendency to mull and search my inner being for explanation ... it all started with being sick and has everything to do with that even now.

    Unfortunately knowing it's not my fault doesn't make it any easier to live with:)
     
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,089
    Likes:
    13,182
    Sth Australia
    Advocating and info gathering on services for others with this is probably the best help you could do for someone with severe ME/CFS and you do not even have to leave your house to do this!

    People with severe ME have a lot of trouble with the advocacy services out there due to the lack of understanding around this illness and it can be near impossible for them to have to advocate to the actual advocate themselves. Ive had to give up after much trying of finding a good advocate for me.

    I hope ones where you are end up finding you and being able to reach out to you for help. Lots ones with severe ME will not use FB as that is just too much!!
     

See more popular forum discussions.

Share This Page