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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Look what we have to go through


Senior Member
Sometimes people have asked me what its like to have M.E. We all have different experiences, but one such experience struck me a few years ago. Most of what Ive written below is from a diary I kept at the time. I know its quite vague, even disturbing for some, but what is crucially important to me is to get across the absolutely overwhelmingly crushing despair that we all feel at times. I havent managed to achieve this, I hope others will do a better job. I am so fed up of those close to me having no idea of what we really go through. How could they ? Sure, but we need the power of language to help us. We can all contribute until eventually we can have something like a blueprint.

One poster whos name I forget recently said that one of the symptoms was like experiencing 3G ( G for gravity ) What a brilliant description, thank you.
One of my experiences is the abdominal pain I sometimes feel upon awakening. It feels like I have been punched hard in the abdomen ( and although Ive gotten my breath back ) that pain is still there, and it doesnt go away, often for many hours.

Every man has his breaking point; on 13th April 2007 mine atomised beyond recognisation by influences I could never understand. I was suffering so much pain, pain that the English language has yet to capture; elusive and secretive it remains hidden in an inadequate mixture of farrogos consumed and regurgitated by psychiatrists, doctors, only to be promulgated as something it is not.
My grinding teeth sapped the pain, where from I dont know, where to I dont care. My head slowly pressed against the floor, harder and harder.
What if I press my skin hard and with a blunt instrument, what if punch my stomach firmly, what if I punch this wall or that wall ? What ridiculous thoughts ! Besides I had tried them many times before and save for a fleeting cathartic relief, they had failed.

I was crying uncontrollably, inconsolably, unshaking in my belief that I couldnt get through this. Feelings and emotions, where do they really come from ? I was soaked in a visceral and vicious outpouring of murderous anger forged and fused with an insatiable desire for love. Please help me someone, anyone; just wrap your arms around me and tell me you care, that you will not let me die and that I am to be loved, even for a moment. To ask for more would be too much, to ask for less would be more than I could take.

I can remember crying, for what seemed an eternity. I remember seductive suicidal tendencies spreading their tentacles across my psyche whilst the walls closed in and the only means of escape drifted in and out like a tormenting chimera. What irony, what strange perversions of reality are made when suicide itself should dance so freely with our want for self-destruction.

I was breaking down emotionally and spiritually, feeling more dead than alive I found myself curling into a ball, compacting my body into a foetal position. They say that in life we make a journey that is circular in nature; why at this point in my life was I longing for a time before I was born. Could we be living in hell and not even know it ? Where are we, who are we ?
So many people end their lives because they believe that in doing so they will go to a better place. What if they are wrong, that the place they go to is actually infinitely worse ? What a shocking idea.

Every thought Id ever had was pouring into a black hole descending down, down, deeper and down. Everything that made me the person I am was being violently shaken down to a quantum paradigm and beyond. And still I kept crying, and still I kept falling; until I fell no longer.

I made it through to the other side, but what I went through I will never know. But I do know this; this illness is like no other. There is so much more that we dont know, there are so many influences that we can never trace. Are we part of a master plan ? Maybe. Will we one day know the truth ? You decide.

Kind regards, Mark


Senior Member
Mark...I wanted to respond because I too have felt pain such as you've so eloquently described. I never talk about it anymore to anyone....the subject is too deep - what I've experienced and felt would be incomprehensible to most ordinary people.

I've lived with intractable and chronic pain for so long, that in many ways, it defines who I am. It is nearly invisable - except for some lines around my eyes and mouth, etched a bit deeper than they should be

It never leaves me - I've entered into an "uneasy alliance" with it, just as I do with the other aspects of ME/CFS.....and take it one day at a time.

I hope what I'm going to say won't offend or disturb anyone (and I'm actually quite rational and sane!) Some time ago, for a period of over a year the pain in both my legs (first one, then the other) for reasons no one could figure out...reached unbearable, unimaginable proportions.

Many meds were tried. Over a 4 month period, nerves were cauterized in my spine, as well as Epidurals given (a very painful procedure in itself), to no avail. When I had to walk, it was with a cane and I held onto the walls for support.

I laid in bed and went slowly, and very nearly, mad with the pain. I began to call it "the meat-grinder" pain...it felt as though my legs (flesh, bones, muscles and nerves) were being dissolved.

There was nothing I could do about it, no treatment touched it.

When I could stand it no longer my tortured brain came up with what seemed like a SIMPLE and quite LOGICAL solution. I decided to ask to have both legs removed and replaced with prosthetics.

I felt like the wolf in a trap - biting off it's own leg to survive.....and it really was that simple. My God....I actually let my mind entertain that as a viable and necessary option!

I never told this to anyone (and of course, in reality those insanely extreme measures would never have taken place) but to even let myself "go there"!?

About that time (again, for unknown reasons) I slowly started to improve and the pain began to lessen over time.

Those were the darkest of days, that I hope I never see again.

I still have a lot of pain but it is manageable and as I said, it is now a part of who I am.

Every so often I'll have a dream and in it I'm painfree! I used to have wonderful dreams where I could fly....I used to like those dreams the best!

Now, when I dream that I'm sitting in a grassy field or swimming in the ocean with NO pain - those simple ones are the best.

If I could have one wish come true, I think it would be to wake up some morning - just once, even - and not be aware of my body and how it feels! To lay perfectly still....and feel - nothing. Just once before I die, I'd like to have that.

I must say, living with physical pain has made me a very compassionate and understanding person - and I considered myself pretty empathetic and compassionate anyway! So this is good.

Now when some well-meaning, but uninformed soul asks me "just how bad can it REALLY be?" .......I remember the dark days.

Only another chronic such as yourself and all our Comrades on this forum can really, truly comprehend.

With compassion........jackie:)


Senior Member
Hello Jackie

It took real courage for you to reply in such detail and I want to thank you. Talking to anyone, even to those closest to us is so difficult. I find it a little easier on here because I am anonymous, nobody knows who I am.

The strange irony is that I would never have opened up like this before I became ill; i've always been such a reserved person, but I am beginning to believe that many of us suffer some sort of PTSD as a result of what we have and continue to go through.

I don't know what the future holds for any of us, but I do know that one day we will all have an incredible story to tell. My story, your story and those of millions more will fill the pages of history documenting a time when human beings turned their back at a time when their fellow humans needed them most. As yet there are no words to describe this betrayal, but one day.....

Love, Mark


Senior Member
Sofa, UK
Thank you Mark. I don't think we will ever be able to communicate what we go through to our friends and family, but on this forum I have at last been able to share some of that experience and know that I am understood for the first time. At the moment, that is a revelation to me, and it's enough for me for now: I never really wanted to burden those I love with this nightmare anyway, but it turns out that being understood is a human necessity.

Some years ago, I had to have an operation, one that everybody around me could easily understand as an extremely painful experience. To me, it all seemed quite trivial compared to the rest of my life. Actually, having a valid and tangible reason for being in pain felt like a wonderful relief! In a bizarre way I rather enjoyed the whole experience: it somehow managed to override what I feel day to day, it somehow eclipsed the normal pain with something new and different, and for a few weeks, a change seemed as good as a rest.

The extraordinary thing about it was the reaction of my friends and family. As soon as I told them what was happening, the looks on their faces, their words, their sudden kindness, their sympathy, were a revelation! My god, they do have compassion after all! I tried to explain to them that this was nothing, a mere blip, that they could save their sympathy because the op really wasn't that big a deal to me, in the scheme of things. But their love and concern just kept coming. It seemed out of all proportion: for years before, I had thought of all these people as heartless, because they just didn't seem to care about my suffering. Yet now, over my trivial operation, suddenly I saw the face of compassion for the first time in years. So at that time I realised: they do have compassion after all - but they just can't understand or imagine this other, continuous, invisible pain; they don't have any idea what it's like, they have no model for it. When the pain is something they can easily understand, it's a completely different story - they suddenly become human again.

I read today about a Jewish WWII concentration camp prisoner who had his hands tied behind his back and was then hung from the ceiling by his hands for several days. The pain was unimaginable. When he returned to his hut, the other prisoners asked him what it was like. He told them that the wonderful sense of relief he felt when they cut him down and returned him to his friends was so great, that it made up for all the suffering. His fellow prisoners said afterwards that this incredible statement sustained them throughout all the hardships that were to follow.

"Just how bad can it be?". You don't want to know, is the only answer I can give to that. But for me, worse than the pain was having to bear it alone. Not being able, not even wishing, to share that experience with anyone. So thank you Mark, and thank you to everyone else who has shared some of their story - thanks to you, I'm not alone any more.


Senior Member
Bay Area, California
I'm so glad you're sharing here Quilp, Mark, Jackie and others. I can totally relate to your stories. I am suffering too... It's horrible. I can't write it all out though at least not right now but believe me, I really understand.

(((((((((((((((((((♥Group Hug♥)))))))))))))))))))))))