Poor girl. A normal hospital stay is torture, lights on all night so you can't sleep, constant interference through-out the night for tests, being forced to wake first thing regardless of whether you've been awake all night. I've also experienced not being given a meal for days after an operation because I was too exhausted stay awake and no one even noticed. The NHS is shocking these days.
Indeed, hospitals are not ME/CFS friendly environments - to put it mildly. Three years ago I was also hospitalised with severe symptoms (caused by my illness, but the clueless hospital staff attributed my issues to something psychogenic). It was the worst week of my life, blood tests every two hours during the night - I got about 8 hours sleep in total the whole week. It was horrendous. I plan to do a video about it sometime. That was in Ireland.
CFS/ME. is technically a brain injury, caused by encephalitis which increases the fluid pressure in the skull and puts pressure on the brain, that damages a crucial part of the brain called the hypothalamic pituitary axis HPA. This is like the pharmacist in your head. And the effect is like smashing him/her over the head, and expecting it to still be able to do the dispensing correctly. HPA is responsible for sending ALL the correct chemicals to the right part of your body at the right time!!! No wonder CFS/ME sufferers have so many diverse problems. Depending upon how damaged the HPA is, the person recovers or has to learn to live within the limits it puts upon one's life. For Me the main medication that has helped, NOT CURED, My condition is Modafinil, this fully wakes up my brain for some of the day, allowing me to function for about 1/3 of the day. But I still have to be careful and not do too much, physically, mentally and emotionally to avoid the crash.
Wondering if they have tried medication for Mast Cell Activation Syndrome (MCAS) as this disease can produce the same symptoms and triggers including PEM that we see in ME/CFS.
Signed, wish the best for her
Poor girl. A normal hospital stay is torture, lights on all night so you can't sleep, constant interference through-out the night for tests, being forced to wake first thing regardless of whether you've been awake all night. I've also experienced not being given a meal for days after an operation because I was too exhausted stay awake and no one even noticed. The NHS is shocking these days.
Indeed, hospitals are not ME/CFS friendly environments - to put it mildly. Three years ago I was also hospitalised with severe symptoms (caused by my illness, but the clueless hospital staff attributed my issues to something psychogenic). It was the worst week of my life, blood tests every two hours during the night - I got about 8 hours sleep in total the whole week. It was horrendous. I plan to do a video about it sometime. That was in Ireland.
CFS/ME. is technically a brain injury, caused by encephalitis which increases the fluid pressure in the skull and puts pressure on the brain, that damages a crucial part of the brain called the hypothalamic pituitary axis HPA.
This is like the pharmacist in your head. And the effect is like smashing him/her over the head, and expecting it to still be able to do the dispensing correctly.
HPA is responsible for sending ALL the correct chemicals to the right part of your body at the right time!!!
No wonder CFS/ME sufferers have so many diverse problems.
Depending upon how damaged the HPA is, the person recovers or has to learn to live within the limits it puts upon one's life.
For Me the main medication that has helped, NOT CURED, My condition is
Modafinil, this fully wakes up my brain for some of the day, allowing me to function for about 1/3 of the day.
But I still have to be careful and not do too much, physically, mentally and emotionally to avoid the crash.
Thank you for sharing
Wondering if they have tried medication for Mast Cell Activation Syndrome (MCAS) as this disease can produce the same symptoms and triggers including PEM that we see in ME/CFS.
Why don’t the family take video’s and photos