Please help, I'm in a pickle, and really at a loss for what to do.
Short background - long term severe ME, house bound for the past 13 years, stable at around 10%. Always had gut problems from onset 20 years ago, but (just about) manageable.
In July this year, something went wrong with my digestion. Following a stomach bug (I assume), something remained 'broken' in my gut and I lost the ability to eat solid food. I sustained myself on bone broth and coconut water by the spoonful, managing only just to keep it down, eventually progressing to chicken soup and eggs, but then I broke again and was back to liquids only. I've tried slippery elm, aloe vera, sauerkraut juice, and the first stage of GAPs intro. Consuming anything lead to considerable GI tract pain, shaking, sweating, and basically feeling food poisoned. I've had persistent, chronic diarrhoea and abnormal heart rhythms throughout.
The whole process has taken five months, with stool samples and blood tests normal, IBS thrown about, and general procrastinating by my GP. Eventually, I paid to see a private gastroenterologist who gave me the line of 'knowing nothing about ME', and shunted me back to the NHS.
Finally saw a NHS gastro three weeks ago. She was very good, took me seriously and marked me 'urgent' for a CT scan, endoscope, colonoscopy and also a referral to cardiology and dietetics, all of which I'm waiting for.
However, following the hospital visit for just a consultation (it was extremely hard to get me there), I have crashed to the worst extent I've ever experienced.
I'm bed bound and I feel I cannot breathe; there's a pressure on my chest, and even with oxygen (I have a concentrator following a stint at Breakspear five years ago), I feel utterly suffocated and oxygen deprived. There are pains and strange sensations all through my trunk. My limbs are numb and tingly, my body's twitching and constantly shaking. I'm too weak to stand, cannot wash or visit the toilet. My heart's pounding very uncomfortably. Noises, light, movement, touch are excruciating. MCS, ENT symptoms and allergies have gone through the roof, sinuses and eyes very sore. The slightest movement sends my world spinning. I'm very, very sick. My head feels inflamed and I have new depression/mental disturbances. I literally cannot cope with anyone being in the room with me. My whole body feels like it's shutting down and I've lost all control over it. A darkened room is all I can cope with but the struggle I'm having to breathe is terrifying me.
I'm managing to eat one jar of baby food at night after sedating myself with zopiclone. This is the only time I can take on any liquids, too. I've lost three and a half stone and am still losing. I'm deteriorating quickly, and I don't know what to do. I'm genuinely frightened that I'm dying.
I don't know what to do because I cannot see how I can possibly contemplate hospital again, whether for tests or otherwise. I honestly think it will kill me, I cannot envisage being moved at all. But I also know I cannot continue like this, unable to eat. I just cannot manage what needs to be managed in the grips of this level of rapid deterioration, and can't cope as it is, let alone risk crashing further. Catch 22 .
If anyone has any advice, words of wisdom, experience.. please help. I know forums don't replace medical attention, but I'm at a loss for what to do.
Thank you for taking the time to read.
Short background - long term severe ME, house bound for the past 13 years, stable at around 10%. Always had gut problems from onset 20 years ago, but (just about) manageable.
In July this year, something went wrong with my digestion. Following a stomach bug (I assume), something remained 'broken' in my gut and I lost the ability to eat solid food. I sustained myself on bone broth and coconut water by the spoonful, managing only just to keep it down, eventually progressing to chicken soup and eggs, but then I broke again and was back to liquids only. I've tried slippery elm, aloe vera, sauerkraut juice, and the first stage of GAPs intro. Consuming anything lead to considerable GI tract pain, shaking, sweating, and basically feeling food poisoned. I've had persistent, chronic diarrhoea and abnormal heart rhythms throughout.
The whole process has taken five months, with stool samples and blood tests normal, IBS thrown about, and general procrastinating by my GP. Eventually, I paid to see a private gastroenterologist who gave me the line of 'knowing nothing about ME', and shunted me back to the NHS.
Finally saw a NHS gastro three weeks ago. She was very good, took me seriously and marked me 'urgent' for a CT scan, endoscope, colonoscopy and also a referral to cardiology and dietetics, all of which I'm waiting for.
However, following the hospital visit for just a consultation (it was extremely hard to get me there), I have crashed to the worst extent I've ever experienced.
I'm bed bound and I feel I cannot breathe; there's a pressure on my chest, and even with oxygen (I have a concentrator following a stint at Breakspear five years ago), I feel utterly suffocated and oxygen deprived. There are pains and strange sensations all through my trunk. My limbs are numb and tingly, my body's twitching and constantly shaking. I'm too weak to stand, cannot wash or visit the toilet. My heart's pounding very uncomfortably. Noises, light, movement, touch are excruciating. MCS, ENT symptoms and allergies have gone through the roof, sinuses and eyes very sore. The slightest movement sends my world spinning. I'm very, very sick. My head feels inflamed and I have new depression/mental disturbances. I literally cannot cope with anyone being in the room with me. My whole body feels like it's shutting down and I've lost all control over it. A darkened room is all I can cope with but the struggle I'm having to breathe is terrifying me.
I'm managing to eat one jar of baby food at night after sedating myself with zopiclone. This is the only time I can take on any liquids, too. I've lost three and a half stone and am still losing. I'm deteriorating quickly, and I don't know what to do. I'm genuinely frightened that I'm dying.
I don't know what to do because I cannot see how I can possibly contemplate hospital again, whether for tests or otherwise. I honestly think it will kill me, I cannot envisage being moved at all. But I also know I cannot continue like this, unable to eat. I just cannot manage what needs to be managed in the grips of this level of rapid deterioration, and can't cope as it is, let alone risk crashing further. Catch 22 .
If anyone has any advice, words of wisdom, experience.. please help. I know forums don't replace medical attention, but I'm at a loss for what to do.
Thank you for taking the time to read.