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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.

pixabay-CFS-ME-sleep-bed

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

{ 13 comments… add one }

  • Sushi August 5, 2018, 2:20 am

    Thanks @Jody–great article!

  • rwinsmom528 August 5, 2018, 10:03 pm

    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?

  • Jody August 5, 2018, 11:55 pm
    rwinsmom528

    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?

    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

  • Jody August 5, 2018, 11:56 pm
    Sushi

    Thanks @Jody–great article!

    Sushi,

    I am happy to have the opportunity to do this.:)

  • rwinsmom528 August 6, 2018, 12:20 am
    Jody

    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

    Thank you, Jody!

  • Victoria August 10, 2018, 1:58 am

    Great article, Jody.
    You're so lucky to have a supportive husband and family.

  • Jody August 10, 2018, 2:03 am
    Victoria

    Great article, Jody.
    You're so lucky to have a supportive husband and family.

    Ain't that the truth! Thanks Victoria.

  • Rufous McKinney August 18, 2018, 11:13 pm

    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.

  • Jody August 22, 2018, 3:50 am
    Rufous McKinney

    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.

    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:)

  • taniaaust1 August 22, 2018, 5:33 am
    rwinsmom528

    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?

    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!!

  • Rufous McKinney August 22, 2018, 9:23 pm
    Jody

    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:)

  • Rufous McKinney August 22, 2018, 9:44 pm

    Hi Jody, thanks for your kind response, I'll pretend we are sitting together, sipping tea under a pretty tree!

    I was thinking about how friends fall away and all the traps that arise here. For example, a friend has her set of protocols that helped her with her stuff, but when I don't follow her suggestions, friend withdraws.

    In the arena of philosophy, we're told this is all some illusion, and so your dreaming your illness. My buddhist friend actually suggested its all in my head that its just a thought. This type of invalidation is so pIainful. And when it comes from very aware people, even more so. This left me in tears.

    I was previously involved with Non-Profit organization activities. Then I'm too sick to participate further. So then those people "resent" that your not able to participate they drop out of your life, also. It feels like they think you've abandoned the cause, so they abandon you.

    Then there is the: well just don't talk about it. So now I am working on the just don't talk about it, to my husband. I understand it very hard to be married to someone who is sick like this. My husband has joint and mobility issues and: does't talk about it. So its gotten pretty quiet around here as I just try to keep it all internalized.

    Family fall away too. My brother doesn't "get" that I am ill. Since his wife got stage 4 cancer, (and is 15 years later in remission or at least still managing to exist thank goodness)…I calmly explained I could not meet them at night in a different town. So they call me at nite to show up and meet them. I said I was not going to be able to. Now it appears my brother isn't talking to me. This is my only remaining relative who speaks to me and he's not there.

    We must be quite self reliant, apparently.

  • Jody August 31, 2018, 2:51 pm
    Rufous McKinney

    Hi Jody, thanks for your kind response, I'll pretend we are sitting together, sipping tea under a pretty tree!

    I was thinking about how friends fall away and all the traps that arise here. For example, a friend has her set of protocols that helped her with her stuff, but when I don't follow her suggestions, friend withdraws.

    In the arena of philosophy, we're told this is all some illusion, and so your dreaming your illness. My buddhist friend actually suggested its all in my head that its just a thought. This type of invalidation is so pIainful. And when it comes from very aware people, even more so. This left me in tears.

    I was previously involved with Non-Profit organization activities. Then I'm too sick to participate further. So then those people "resent" that your not able to participate they drop out of your life, also. It feels like they think you've abandoned the cause, so they abandon you.

    Then there is the: well just don't talk about it. So now I am working on the just don't talk about it, to my husband. I understand it very hard to be married to someone who is sick like this. My husband has joint and mobility issues and: does't talk about it. So its gotten pretty quiet around here as I just try to keep it all internalized.

    Family fall away too. My brother doesn't "get" that I am ill. Since his wife got stage 4 cancer, (and is 15 years later in remission or at least still managing to exist thank goodness)…I calmly explained I could not meet them at night in a different town. So they call me at nite to show up and meet them. I said I was not going to be able to. Now it appears my brother isn't talking to me. This is my only remaining relative who speaks to me and he's not there.

    We must be quite self reliant, apparently.

    It sucks Rufous McKinney. No two ways about it. I have some solid friendships online with other people who share my illness. I am very lucky to have them. I have also gone through the weird labyrinth of involvements with some organizations and have run into some really great people but also people who have messed me up in one way or another. I am very careful these days about what I will get involved in and am always prepared to draw back and protect myself if need be.

    Some sick folk are not safe to be around. And some healthy people have no grasp at all of what we go through and we are better off without them. Yet at the same time, … it would be nice to be able to have some of these relationships we miss so much, it gets so lonely when other people just … leave us.