Very Severe ME Isn't Being Paralyzed Or In A Coma.
Its Much More Terrifying.
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Living Death
Very severe & extremely severe ME patients are some of the sickest people on earth.
Being completely bedbound and dependent on IV fluids or feeding tubes requires immense care, care that is often not or underprovided.
Being unable to communicate makes simple needs like hunger, bowel movements, or even an itch completely at the mercy of caregiving and luck.
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Waking Nightmare
Yet the nightmare of extremely severe ME is that while your body is near paralyzed you remain completely aware of it and of your situation.
Someone with very severe ME may be as disabled as a quadriplegic, but no amount of high-tech wheelchairs can aid them in being less bedbound. The limbs are not simply unfunctional, they and constantly sending signals of pain and dysfunction.
Someone with extremely severe ME may look to basically be comatose. May be cared for as though they are comatose. Yet they are aware of what they are going through. They may sleep often but they are still coming in and out of this endless nightmare.
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Functioning ≠ Health
Our society often cares only about functional disability. What you can or cannot do and how much help you need. People with ME are profoundly functionally disabled. Yet ME is not just a disability it is an illness. The severity of suffering matters to many just as much as the severity of disability.
You see often pain clinics and even pain patients justify the use of opioids or other palliative treatments with "it gave me my life back here are all the things I can do because of x medication."
Yet the point of pain control is not to enable functioning, that is a secondary benefit. The point of pain control is to control pain.
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Bedbound Is Not One Level
Bedbound is not bedbound suffering. There is a huge difference between being bedbound and able to enjoy food, watch TV, play video games, talk on the phone and so forth or being bedbound and unable to do anything but breathe through your pain and try to rest.
Many doctors treat all severe ME patients who are bedbound or worse as equivalent. As though that is the bottom of the scale. But it is not. It is the top of a whole new scale.
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Doing More But Feeling Worse Isn't Progress
Many people with ME are seen as more severe if they leave bed less. Or if they do more activities of daily living like feeding or brushing hair independently. Yet often these activities are done only because the person has no choice. They have inadequate care.
Doing more of these activities and feeling worse as a result, having less cognitive functioning, less ability to live any life outside the pain, is not progress and is not less disability it is more.
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Palliative Care Is Essential
There is so much that can be done for very severe ME patients. Not in terms of recovery but in terms of quality of life. Doctors must not judge the success of treating very severe patients by whether they get out of bed. They must judge it by whether they get out of their severe suffering.
When the human cost of suffering is so high, doctors should not hesitate to use all drugs in their arsenal. In particular, benzodiazepines, nerve pain agents & muscle relaxants, migraine injections & prophylaxis, POTS medications, IV fluids, sleeping aids, and mast cell drugs should all be used to maximum effect to control a patient's symptoms.
ME is a chronic incurable illness. So addiction should not be a doctor's large concern. Palliative care is a means of survival and the best way to give patients a shot at surviving into some form of improvement.
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The Importance Of Aknowledging Conciousness
Extremely severe ME patients or any ME patient who cannot communicate runs the risk of being seen as virtually unconscious. This is a horrible risk and nightmare scenario for many.
These patients are not unconscious. Indeed when it comes to sensory input they are hyperconcious and extremely vulnerable to stimulation.
If caregivers are not aware of this and treat a patient roughly, or quickly with the assumption that all that matters is getting the task done they can do irreparable harm and bring the patient's chance of ever communicating their harm down to zero.
They can kill a patient with overstimulation when their assumption is that the patient cannot be stimulated.
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Not Just Missing
I believe it is essential for ME advocacy that the public, friends, family, and doctors be constantly reminded that those with ME, particularly severe ME are not JUST missing from our lives.
Severe ME is more than a void or a coma. It is living death. The constant pain, nausea, migraine, and poison running through our veins day after day.
Surviving severe ME takes immense dedication. People with ME are not just lying around waiting for a cure. We are in a constant battle to survive long enough to see one.
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Why ME Suffering Matters
We are human. All human suffering matters.
It can often be addressed. While there is not treatment for the energy defecits in ME there are many palliative measures that can be taken to control suffering.
Hypersensitivity must be differentiated from unconsciousness. To fail to make this distinction can have devastating effects on patient care and outcomes.
It can be a trigger for change. When people realize the true nightmare of severe ME they are more likely to take the disease seriously and fight for us. The image of severe ME as simply bedbound and resting must be dispelled. The image of extremely severe ME as a void or coma must also be cast aside.
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Happyn Halloween to all our allies. But severe ME and very Severe ME live in a terrifying reality all year long.
Extremely Severe ME is not a coma. It is an endless hell of living death.
People with severe Myalgic Encephalomyelitis and/or Long Covid aren't just waiting for a cure we are battling horrors everyday trying to survive long enough to see one. Many lose that fight.
We are the millions missing but we are not missing in a void. We are missing in an endless waking nightmare of
Severe Pain sensory, Sensitivitiy chronic Migraine bone-crushing fatigue endless nausea and malaise. Feeling like we are being wrung out like a wet sock then crushed under an elephant. Like we are being boiled and burned alive. Like our skin has been pulled away leaving every touch like needles from allydonia.
Not to mention the nightmares.
Nightmares of what would happen if our care went away or our caregiver gets sick or dies.
Nightmares of what would happen to us unable to evacuate from fires, floods, storms and war in an increasingly unstable and genocidal world.
Nightmares of being forced beyond our limits, bones and muscles screaming, too weak to protest. Of being killed by indifference and ignorance of our limits.
Nightmares of never recieving palliative care or having it ripped away because it doesn't "improve functioning."
Nightmares about our fellow community members left to die of malnutrition, dehydration, exhaustion, homelessness, and genocide. Of the horrific stories we hear and the terrifying reality of all those that are silenced.
We may not be able to end all of these nightmares with a magical cure. While @openmedf and @solve_cfs may work tirelessly we know our wait is long and terrifying.
But we can be there for eachother. We can hold eachothers humanity together even when the world sees us as inhuman. We can fight for Fair Pay For Homecare for Mutual Aid and for Community.
And we can fight to save others from this nightmare. To shout with every bit of communication we have left to tell those who can still walk and sit to Stop Rest Pace and avoid crashing before its too late. To mask up before a virus pulls yet another victim into this hell.
