What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

[Legendrew]

As many of you will be aware, we are fast approaching Severe ME day - 8th August. This year the content team here at Phoenix Rising plan to mark the event with something a little more personal and hard-hitting; an article focusing upon one simple question:

"What is the one thing about suffering with severe ME/CFS that the world needs to know?"
To answer this we need your help!

Clearly this event is very focused upon the worst effected of patients but everyone is welcome to have their say, hopefully though we can get a lot of responses from the most severely impacted - after all it is these patients that have experienced the worst this disease has to offer and so we ask that you share your message so that we can hopefully spread that message further.

From the selection of messages we receive here, we will produce an article to hopefully let the world hear and hopefully understand more about the disease and why people need to start taking notice.

To add a personal touch for the article we hope you can leave your first name and age along with the article and perhaps even a short sentence explaining how long you've been ill and how severely impacted you are. If you wish however we can use your online username or even label the message as anonymous, if this is something you'd like rather than a real name then make sure to leave a note in your reply so that we can do this and protect your anonymity.

Obviously, depending upon how many responses we receive, not every response can be used but I'll be sure to privately message those who we choose for inclusion in the article.

If everything goes to plan the finished article will be published here at Phoenix Rising on the 8th August.

Thank-you for taking the time to read this, so now I throw the question out to everyone:

What is the one thing about suffering with severe ME/CFS that the world needs to know?

Andrew

 

[shannah]

Here's one person's current story that may be helpful.

http://documentingme.net/2014/07/11/final-stages/

 

[Legendrew]

Here's one person's current story that may be helpful.

http://documentingme.net/2014/07/11/final-stages/

Very powerful stuff, very hard hitting to me personally too. at my onset I had nearly 3-4 months of near constant nausea so I understand the nightmare it causes and the undue punishment of vomiting upon the hard work to eat food.

 

[Gingergrrl]

Is Severe ME day a worldwide day or only in the UK? I am not familiar with it and was wondering where the letters and article are printed? Is it for the US and other government officials? Sorry for my ignorance of this important event!!!

 

[Purple]

Is Severe ME day a worldwide day or only in the UK? I am not familiar with it and was wondering where the letters and article are printed? Is it for the US and other government officials? Sorry for my ignorance of this important event!!!

Here is some information from last year (the first Severe ME Day):
http://phoenixrising.me/archives/18052

 

[Esther12]

"What is the one thing about suffering with severe ME/CFS that the world needs to know?"

Any tips on diet/sleep/healthy living you might vaguely remember will be gratefully received?

It's not that bad, so long as you stay positive?

It's a lovely excuse to stay in bed all day?

I have to admit, I don't think I'd count as having severe ME, but I suspect that these are the sorts of things the world most needs to know.

 

[Gingergrrl]

Here is some information from last year (the first Severe ME Day):
http://phoenixrising.me/archives/18052

@Purple Thank you and I read the link which was very moving. I am still confused how the information would be disseminated to the world or if the stories/articles would just be published here on the PR website? I also wasn't clear if this is a national day in the U.K. versus worldwide as I have not heard of it here in the U.S. How do we publicize it and make it known outside of PR?

 

[*GG*]

I would say that it leads to a loss of independence and leads to a life of a lot of uncertainty. I had worked for 10 years while ill, and am now trying to find my way in regards to supporting myself and applying for disability NOT via Social Security!

My life is in limbo, but luckily I have had family to fall back onto to take me in, but I still have college loans to pay and other bills. My car died, so I have had to tap some money for my retirement for a very old used car. Should I have spent more on a car or do I have a future to look forward to with some kind of retirement? I really don't know!

I have let my insurance go, my employer paid for it until March, could not afford it, hopefully I can get it back in a short while, (1 year or less?).

GG

 

[Sean]

What is the one thing about suffering with severe ME/CFS that the world needs to know?

How lonely it is.

 

[GracieJ]

What is the one thing about suffering with severe ME/CFS that the world needs to know?

How lonely it is.

Amen.

 

[Gingergrrl]

I think the worst things are losing your sense of identity, having to rely on others for basic help, but mostly not being able to produce energy on demand like the rest of the world and feeling resentful/jealous/fearful and emotions that you don't want to feel. You just want to be healthy and participate in life as you knew it, but you can't. There are so many more "Worst parts" that I don't really know where to even begin!

 

[Min]

That it is an excruciatingly painful living death.

 

[lansbergen]

That it is an excruciatingly painful living death.

Well said

 

[Nielk]

Gabby: I am a 59 year old wife, mother and grandmother. I have been ill and disabled from work with ME for 11 years, fluctuating between severely and moderately effected.


What I would like the world to know about living with severe ME/CFS is that it comes with a lot of losses. The one that has the greatest impact on me personally is the loss of my dignity.


Suffering from a severe form of a chronic, debilitating disease for decades comes with many losses such as physical functionality, social activities, friends and even family members. It is painful and totally life altering. For me, specifically, I mourn my dignity.


Other devastating diseases come with the worldwide understanding of how impactful the disease really is. For example, in my community, when a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero for being so strong, dealing with such devastation.


I will never have the chance to be heroic.


When I first fell off the social grid, I received some phone calls to see how I was doing. After hearing that I suffered from Chronic Fatigue Syndrome, those calls quickly dwindled down. This is because there is no understanding of the seriousness and devastation of this disease. The handful of people who still do call, tell me to go out because it’s a nice sunny day….as if it is a choice that I can make. I have been advised countless times to go for counseling as if it is just a mood think. As far as my community is concerned, I am perceived as one who has been in a deep depression for 11 years and has become a hermit by choice!


Even though I have been suffering physically for so long, it is this loss of dignity that has been the most painful for me.

 

[xchocoholic]

That orthostatic intolerance / dysautonomia could be the reason these patients are so limited.

There's been info on this lately. Tc .. x

 

[Keela Too]

I'm moderate, but having recently had a virus, that for a moment frightened me into thinking I'd become severe.... I think:

People need to know about LOSS....
It's as if a pause button has been pushed and some-one has forgotten to re-start it. The lives we wanted to lead have been lost to us. Yet I have lost less than those who are severe.

They need to know about PAIN, and GRIEF, and the PAIN OF GRIEF, and the GRIEF OF PAIN.
For those who are severe, they are caught in an endless cycle from which there appears no escape.

And they need to know how to CARE - not by constantly talking about the illness, but by finding little ways to show caring. A card, a flower, an email or Tweet... something that doesn't require much response but shows that the individual is not FORGOTTEN!

 

[ukxmrv]

The message I would like people to hear is that this disease should be avoidable and curable. It isn't and it could happen to you next.

For the past 30 years I've had a disease that has had little research funding and when it has been funded it has often been siphoned off into other areas or gone to the wrong team.

We patients have had no control over this. Something rotten exists in the government bodies that control funding and the independent agencies.

If money had been allocated to this disease and to the right people then I don't think there would be severely affected people with ME.

 

[Gingergrrl]

Other devastating diseases come with the worldwide understanding of how impactful the disease really is. For example, in my community, when a woman recently was suffering with cancer, the community organized daily hot meals for her and her family as well as daily visits. She was being hailed as a hero for being so strong, dealing with such devastation.
I will never have the chance to be heroic.

@Nielk This is really true and another aspect that bothers me about the disease. There are diseases such as cancer and other well-established illnesses in which people are viewed as heroic when fighting and trying potentially dangerous treatments (as they rightly should be!) But with our disease, we are ignored or stigmatized not only by society but by actual DOCTORS! My family and friends think I am heroic for my efforts and I try to remind myself that these are the people who matter and those who cannot or will not get it, simply are not worth the little energy that I have worrying about it. But it is tough to deal with.

 

[Snowdrop]

"What is the one thing about suffering with severe ME/CFS that the world needs to know?"

Dear healthy people with busy lives.
I'd like you to know that I did nothing to encourage this illness upon myself.

To be clear, I did not ask for, encourage, give in to a mental desire for, choose for the sake of attention seeking to be housebound and isolated unable to do much of anything.

If you believe ME is not real I can assure you your belief is in error and probably derived with very little effort at uncovering the facts.

Nothing would make me happier than to be able to contribute what talents and skills I possessed to my family and my community.

I am Snowdrop. I have slow onset ME that has been steadily worsening for the past 9 years or so although I had experienced less severe symptoms for decades prior.

 

[Nielk]

Is Severe ME day a worldwide day or only in the UK? I am not familiar with it and was wondering where the letters and article are printed? Is it for the US and other government officials? Sorry for my ignorance of this important event!!!

The idea was generated in the U.K but I think by now, it has been adopted internationally as a special day of remembrance and awareness raising of the 25% ME severely affected patients.

This thread was started by Legendrew with the aim of producing an article on Phoenix Rising compiling patients' experiences as to what they would like the world to know about living with severe ME.