In memory of anonymous victims of ME

[Ravn]

Thought it would be good to have a thread for those who wish to acknowledge a friend lost to ME but who cannot post the name or identifying details out of respect for the wishes of the family.

This was prompted by the recent suicide of a good friend (not a member here) who suffered decades of ME, severe initially then mostly moderate. Finally a last severe spell with intractable excruciating pain became unbearable.

Dearest friend, I'm forever indebted to you because when I first fell ill you put aside your own preferences for privacy and discretion around your own health, despite hardly knowing me back then, and put me on the right track for diagnosis and treatment, or rather avoidance of harmful treatments. Without your intervention I would have made myself much, much worse by trying to exercise myself out of my peculiar 'unfitness'. And you made me laugh like few others could!

Thank you my friend, you've been a great support. I am so sorry nobody could help you when you needed it most.

RIP and free of pain.

 

[Diwi9]

@Ravn - What a beautiful tribute to a friend. I'm sorry for your personal loss and the loss to our community. One cannot measure another's suffering and sometimes hope can no longer blanket pain.

 

[taniaaust1]

good idea. I have someone who was not a friend as such but someone who used to live in my neighbour hood. This guy I would guess would of been in his early 50s?? (he didn't look all that old) when he finally died of "organ failure". His nick name was Radar, he was a friend of my father.

Radar had been unwell ever since I'd known about him. He'd had had testicular cancer in his 20s but was long over having that. His house was mess and he struggled to cook due to "exhaustion", he slept most of the time. Doctors keep on telling him there was nothing wrong with him and though he ended up in hospital several times, within days he'd be kicked out again and be told once again that he had nothing wrong with him (this was in the same town where I couldnt get a ME/CFS diagnoses).

About a year before he died he FINALLY was diagnosed with FM. Only months before his death he was in hospital again before he was kicked out again with the normal thing of being told he had nothing wrong with him.

While he was in the hospital, he wasn't even getting his meals as he was sleeping through them and he'd wake up and find them taken away and then was being left with nothing to eat (my father went down to the store to get him food on at least one occassion while he was there due to that).

Anyway it's sad, this guy Im sure who had ME (my father wouldnt eat at his house due to his post nasal drip) due to how he sufffered with extreme exhaustion and other symptoms (FM etc) but kept being medically ignored, died without ever getting his ME/CFS diagnosed. (this was all going on when I was at my worst so I never was able to get involved).

 

[KaitIsTired]

I didn’t know this condition was fatal

 

[Sushi]

I didn’t know this condition was fatal

It rarely is, though some cases are documented. Mostly we live in a limbo, or as Dr. Nancy Klimas said: “The good news is that you don’t die of it; the bad news is that you don’t die of it.” (Sorry for the loosely paraphrased quote)

We do have an

“ In Memory of”

section of the forum, and though there are many names there, probably most did not die directly from ME/CFS.

 

[wabi-sabi]

Mostly we live in a limbo, or as Dr. Nancy Klimas said: “The good news is that you don’t die of it; the bad news is that you don’t die of it.”

I just love this quote. It so sums up the illness.

 

[KaitIsTired]

It rarely is, though some cases are documented. Mostly we live in a limbo, or as Dr. Nancy Klimas said: “The good news is that you don’t die of it; the bad news is that you don’t die of it.” (Sorry for the loosely paraphrased quote)

We do have an section of the forum, and though there are many names there, probably most did not die directly from ME/CFS.

This disease sucks ass but at least I get to live my life and start a family etc... if you’re dead you can’t do anything.

 

[wabi-sabi]

but at least I get to live my life and start a family etc...

Yes, you can!

I'm trying to live just as much life as I can within the limits the disease imposes. It's a constant battle and sometimes it gets me down, but I'm still trying to have a life.

 

[Loomcgoo]

This is to who was known as my "ME twin". There are no words to describe your loss.

I so badly miss our chats and your ability to describe in the most amusing way the absurd daily struggles we face. You normalised our experience. I'm angry at the lack of healthcare and that there are no treatment options which means for some of us ending our suffering is showing a kindness to ourselves.

As ill and as restricted as you were; you were one of the most full of life people I have ever known. You were also one of the most optimistic. I'm so sorry your suffering became so intolerable. Your humour and compassion to help others with what you knew will shine bright for an eternity. You were a joy to know and I still cannot comprehend your loss.

Love you always


Not that I need to defend your final act of self mercy, but I found an article you would have valued https://www.healthrising.org/blog/2018/01/10/farewelll-last-post-anne-ortegren/ - too many have been needlessly lost because of the lack of funding and political pressure to research solid treatment options.