Rant (long)- sorry

[Kirsteen]

Sorry for this rant but no other group would understand. As I've already stated I've had M.E. for nearly 4 years and severe digestive issues for about 18 months. In an effort to get well, I've tried many different diets and started a raw food one last October. This is definitely the diet I want to stick with. I really believe it’s the most healthy and it ‘sits’ well ethically.

I class it as ‘high raw vegan’ because I eat everything uncooked but don’t sweat over whether nuts and seeds are purely raw and I have the occasional raw sweet corn, olives etc.

However, since I started it, the M.E. has got slowly worse (Dr. Myehill reckons sufferers need a high protein diet but I don’t know if that’s true) Anyway I was prepared to put up with that because the digestive problem seemed to improve. Then come the first of this month, that also went rapidly downhill. My stomach is constantly uncomfortable and extremely tender. I’ve had three full scale attacks. An attack can come on anywhere between 1 – 4 hours after a meal. The discomfort escalates until I’m lying literally screaming in pain My upper abdomen feels as though something’s trying to push it’s way out from the inside and this gradually spreads throughout. I can’t stop yawning and retching and this can last up to 12 hours. The sweat pours off me ‘till I’m wringing wet and is replaced by such uncontrollable shivering and extreme cold that no amount of extra blankets or hot water bottles help. My teeth chatter uncontrollably and my muscles spasm from shivering. I’m left unable to stand. I need to be practically carried to the loo and back. I’m eventually sick, usually about 12 – 14 hours after I’ve eaten and, sorry to be gross, but the food looks as though I’d just swallowed it, there isn’t even the usual smell of vomit.

It’s got to the stage that I can really only handle juice, though that still makes me uncomfortable and not much of that. There’s no particular food that sparks it off, even just blending a banana and an avocado into my juice was enough to have me screaming. Last Thursday I was feeling really positive, physically better, listened to some inspirational tapes, did some EFT and meditation and was really hungry which I though was great. I mad a small bowl of Annette’s wonderful Chia Carob Pudding and 4 hours later had one of the worst attacks ever.

My weight has now dropped to just over 7 stone and the consultant (who has already tried every test known to man) is now worried that he’s missed some kind of cancer (I’m convinced it’s not that – it would have shown up by now) and wants to start all the tests over again. I’m not happy about that. I don’t mind the blood tests and samples etc but I’ve already had 2 full CT scans and don’t want the radiation from another. He says he won’t press for it if I can put on a substantial amount of weight before 28/6 when I see him again. Unfortunately it’s going the other way:pout:

I’ve tried digestive enzymes, probiotics, systemic enzymes, meditation, EFT etc and nothing seems to work. I’ve always been a ‘glass is actually more than half full’ type (I used to be nicknamed Pollyanna ;) so this is really frustrating me. I don’t want drugs, not that anything they’ve given me has helped except the morphine drip the hospital put in for the pain but I hated that, I want food to do the job. But when even green juice isn’t helping but hurting – where do I go from here? I’ve tried water fasts but I’m already so weak I can’t handle them and keep collapsing. Absolutely any suggestions would be really really gratefully received.

[Raw Rob]

Don't got to a consultant who is putting pressure on you ie "He says he won’t press for it if I can put on a substantial amount of weight before 28/6", stuff like that isn't going to help. Try to find a holistic practitioner who can work with you in the way you want to move forward.

My only thoughts are if your body really doesn't want food at the moment, maybe a supervised fast is what you need. It's not going to help you put weight on in the short term but it might get you going in the right direction.

Rob

[Carrot Top]

Kirsteen. I have no experience or knowledge of M.E. but you are obviously having a very torrid/challenging time at the moment. There is someone who comes along to the Southamton Pot Lucks who has M.E. & is VERY knowledgable about relationship between food & M.E. She is also a regular contributor to this website & I feel very sure she will be able to offer you some helpful guidance... & am sure that as soon as she reads your Post, she will respond. She is on hols in America at the moment but I think she is due back sometime next week. I will send her a private message to prompt her to read your request for help. Hang in there - things will get better...

[Ruth]

Hi Kirsteen. Hope you are having a better day today.

My friend carrot-top sent me a message about your post, asking if I had any suggestions as she knew I had been through the same. I am not sure I have much concrete advice or suggestions because in truth we are all so different and require ourselves to listen within not without. Indeed all M.E is turns out to be a whole load of symptons begging us not to try to 'cure' them or shut them up; but to listen sweetly, gently and profoundly to what they are trying to teach us. It is about listening within despite every temptation to follow worldly understanding about what's best for us. So I will not have the right thing to say to you, despite having been through a similar landscape. Nor will anyone. Only you and your body can commune and take each other's fearless hand.

M.E is an auto-immune condition where for some reason the body has started to attack itself in many ways including through all sensory stimulation as well as food. To go to cause with this illness (as with any other 'condition') in order to be finally free one has to not be frightened of the symptons which show up, but learn from them why they started up in the first place. It takes courage to lean back into the inferno and be calm. Everything you want or desire to know is there in the midst of that storm, and is going to teach you and be there for you. But first you have to let go what you think is right for Kirsteen in order to listen. And this is even more exciting than going raw I tell you....even more of a beautiful story!

I am going to be blunt about my own journey and hope it may be of some use or comfort. Yes, I am almost 100% raw now and find it easy to be so BUT had I attempted to go raw DURING my M.E years without transitioning, I would have been holding a death wish.

Raw food is extremely powerful as you know. It has presence; life-force. It changes things on the surface, very rapidly sometimes before we are ready to be changed. The detox as you have found can be HUGE and over-powering if your body has not come to it naturally; and all the symptons you describe are typical of a massive detox not just M.E. No doubt eating raw food is the very best diet on the planet for a human being in it's natural state; BUT when you are already in a position of transitioning through a complicated auto-immune illness, and a very un-natural state, the very last thing you need is to tax it by intellectual demands and needs of eating and lifstyle perfection.

It took me years of transitioning to get to where I am now. Years of gently allowing the body to recover enough to handle raw food. I used to even do adrenaline at the thought of herbs...when bed-bound couldn't even have sprouts growing in the room...too powerful a vibration for the body to handle at that point. If i had tried to change my diet whilst still having digestive or any other major symptons it would have held back the gentle recovery process which we all need in order to heal. It's not a race after all; it's a remembrance. You do not need to earn an A+ or star or medal. You do not need to come first. All you need is to re-cover yourself and re-member.

I thank God I could not see or read because it meant I had to listen within for perfect guidance and go with what my body requested in each and every moment rather than looking for advice from outside; books, doctors, teachers, raw food. With M.E... all it wants you to do is listen and learn from IT. It is you trying to teach you; to get you to trust. The louder your symptons get, the more desirious it is of teaching you to listen to what you really need; to trust that it is already provided. If one type of food (raw) is superficially doing this to you, the suggestion is to agree with it (no pun intended) and let it go; agreeing to transition maybe in the future. Maybe you can come to the place of aggreeing to eat whatever you can whilst having M.E symptons, whilst concentrating on loving through them in peace. Patience and peace will be build you up in a tangible way which no food stuff can do. Forgiveness has more nutritional health benefit than any food! And peace even more so....just think how your hormomes and immune cells are affected by stress or intellectual bullying to be perfect; even when eating a raw diet! Sometimes I wonder whether going raw is an excuse to love and give to ourselves through food when we WON'T agree to do it unconditionally NOW! If you choose to Love and be at peace with yourself before you think you're doing everything perfectly, before you are cured, the raw food will naturally follow into that landscape of perfect peace. You will be ready for it. It will be ready for you.

Eat what builds you up not knocks you down or sends you reeling. Raw food can be your life once well and in the meantime you can have fun exploring what patience and forgiveness mean to you whilst you transition at the rate your little body can handle! Not everybody can go raw overnight or even in a year. It probably, with my illness took me 10 years of transitioning to the diet I have now; and even then i purposely keep it below 100% becasue I have the ME sensory sensitivity and have needed to transition back to the world not further into reclusivity.

No good having a perfectly clean and ethical body completely well from ME if you still can't function or join in the world. Unless that's what you want!

Raw food is good; but only for a body which can handle it. To one that is already fighting it puts more fuel onto an already well-stoked fire, and is not useful until said fire has died down a bit! Some people who have less severe CFS/ME can go raw more easily and find it helpful in reversing their condition. I would suggest you are not one of those people...yet.

If you are normally ill and using raw food to recover your health you would expect a detox, and could expect to eventually come through it. With severe ME you will go through much more of a detox; you may have years of stuff to undo. True most people with any type of M.E would run to pay that detox price to get well as fast as possible, but do not be decieved. Ask yourself is that wellness; wholeness? Is it not perpetuating the conditions, the characture traits which bought about the condition in the first place? You cannot cover up the non-listening and racing ahead which has lead to illness with a 'cure' from outside, even raw food. Getting rid of a severe auto-immune illness is not about what you are putting into your system but about HOW you eventually allow yourself to stop fighting everything sesnory going on. Going high raw will engage somebody with severe ME in an even bigger fight or flight reaction, as you have found out.

The question to ask is not what to eat but why are you physically fighting and having a reaction? What causes your body to fight itself? Answer that and you will eventually be able to eat what you want; you will be cured and away from the battle-ground, and your food will be fuel not a cure or a new religion. It will be a diet not a deity and your body will have 'cured' itself through the nutrition of listening and love. Most people with M.E need to learn to eat 'normally,' away from rigid diets. They have different needs from other people; and relaxation over diet is called for rather than stedfast adherrance, contrary as that may sound. Nutrition comes from many things, not just food, and that's what people who do M.E need to adjust to. You cannot control your surroudings (the external) to be in physical peace; it must be felt from within to enable the constant adrenaline reaction to cease. Indeed you need a mind/body at peace to be able to absorb and digest food anyway, and without that whatever you eat will not be absorbed. Forgiveness is a molecule with immense nutrional power; and learning to eat anything with peace in mind is more important for somebody with ME than going raw.

It is not about the food; it is all about forgiveness and letting go. Gentleness; humility and going to listen within to moment by moment guidance. No prior judgement needed, no learning or reading required. But step by step love and patience; tender holding as you get to know who you are and your own needs which are different to wants. They will be unique so need to be learnt.

So my one thought for you is to find out why you are fighting by asking your symptons to enlighten you as to their origin. Forgive the fact your body cannot as yet do high raw vegan and release yourself from all pefectionist expectation or need to cure yourself. Trying to cure yourself is a job and a half so do the other: release yourself. You are fine. ME is not bad. It is a teacher that is all. A teacher of your very truth and identity. Trust it to show you. Relax and re-love.

If you are very dissapointed about not being able to be as raw as you would like you can still have fun planning though as you transition...I collected recipes and saved for my beloved vitamix...even if you are back on wholly cooked as i was for years. Your goal will be in sight through it all; and you will have learnt that wants are not needs; and apparent lack is only a point of view. I thank God for ME. It teaches the truth when you are willing to listen to it's voice.

It truly is a voice for love.

[haverawcake]

Kirsteen
I admire you to have been able to share all of this with us on the forum and really feel for you. I was very touched by Ruth's comments and she seems to have a lot to share that might help. You have people behind you on this forum but I would echo Ruth's voice in saying that nobody can find solutions to our own difficulties for us and only ourselves can really find them. I really hope you can find you answers and eventually heal yourself. Of course the consultant is trying to help and in desperate situations we are lucky to have a well developed health service. But I know full well from my previous (pre-children) work as an art psychotherapist with emotionally damaged clients that the medical model focuses on finding a cure and rather than searching for the cause.
I am very sorry that my chia pudding recipe made things worse. It sounds like there is so little you can eat, you must be so lacking in energy. Although reading books might not be the answer, one book that I found very interesting in my pre-raw time when I was moving towards a vegan, wheat and sugar free diet was Healing with Wholefoods by Paul Pitchford. He recommends a mainly vegan diet but offers huge insight into the effect different foods have on various health problems and body types. Another author who has always stayed with me is Sheldon Kopp - he wrote 'If you meet the Bhudda on the Road Kill Him' and offers insight into finding your own answers. He has also wrote an autobiographical story called 'An End to Innocence' which is a fascinating account of his own battle with a brain tumour. If you feel like doing some reading these books might be interesting for you. But this comes from me who loves to read but rarely has time these days home educating my 2 small children and running a business. This might not be the best thing for you.
I really hope things get better soon Kirsteen. But as Ruth has so articulately and gently explained, most of our answers are found within.
Take care, Annette

[Jax]

Hey absolutely no need to apologise for the rant, that's what this site is all about........learning from others and ourselves ;) And I'm glad you find that this site is understanding of issues surrounding the raw world.

However, since I started it, the M.E. has got slowly worse (Dr. Myehill reckons sufferers need a high protein diet but I don’t know if that’s true) Anyway I was prepared to put up with that because the digestive problem seemed to improve. Then come the first of this month, that also went rapidly downhill. My stomach is constantly uncomfortable and extremely tender. I’ve had three full scale attacks. An attack can come on anywhere between 1 – 4 hours after a meal. The discomfort escalates until I’m lying literally screaming in pain My upper abdomen feels as though something’s trying to push it’s way out from the inside and this gradually spreads throughout. I can’t stop yawning and retching and this can last up to 12 hours. The sweat pours off me ‘till I’m wringing wet and is replaced by such uncontrollable shivering and extreme cold that no amount of extra blankets or hot water bottles help. My teeth chatter uncontrollably and my muscles spasm from shivering. I’m left unable to stand. I need to be practically carried to the loo and back. I’m eventually sick, usually about 12 – 14 hours after I’ve eaten and, sorry to be gross, but the food looks as though I’d just swallowed it, there isn’t even the usual smell of vomit.

It’s got to the stage that I can really only handle juice, though that still makes me uncomfortable and not much of that. There’s no particular food that sparks it off, even just blending a banana and an avocado into my juice was enough to have me screaming. Last Thursday I was feeling really positive, physically better, listened to some inspirational tapes, did some EFT and meditation and was really hungry which I though was great. I mad a small bowl of Annette’s wonderful Chia Carob Pudding and 4 hours later had one of the worst attacks ever.

I don't have much experience with ME, but certainly do of IBS and found a lot of the above extremely similar to the IBS attacks that I've had, so got to wondering about your 'digestive issues', were they connected to IBS at all?

[Kirsteen]

Hi. I wanted to thank everyone for their replies and sorry I haven’t got back sooner but I’ve had another 3 major attacks since I last posted. One was so bad I was hospitalised again, not really my choice but when I’ve been literally screaming in pain for over 6 hours, I can understand my son finally panicking and calling his aunt who called out the ambulance and I was in no fit state to argue.

Rob, I would love to work with a holistic practitioner but can’t seem to find one. I was attending a holistic nutritionist but that was before I got into raw foods which she wasn’t into and, anyway, she’d already stated that she felt she’d helped me as far as she could and couldn’t do any more. I would have liked to find a naturopath but the only 3 qualified ones I can find in Glasgow all work from the same clinic. Now, I’ve no wish to be negative but I find it hard to have any confidence in a clinic that offers 10 minute appointments (even for your first one) but assures you they can sell you all the herbs and supplements you will need.

Ruth, As far as the M.E. goes, I think I’m fairly sure what caused it. For almost a year previously I’d been under immense pressure at work and bullying by my boss when I blew the whistle on some unsavoury practices. I’d had to take out an official grievance (the union wanted me to take it to court but I knew they’d close ranks and I’d never win). Then, long story, I had exposure to a fair amount of organophosphates and that seemed to be the trigger.

I’ve obviously had a lot of issues around that and other things in my life (hasn’t everyone) but I honestly don’t think there’s anything unresolved (yes I know I’d still be saying that if I was in denial) but I honestly don’t think I am. I’ve practised meditation for over 30 years, I’m qualified in Reiki, was a fully insured holistic healer, qualified counsellor, had counselling myself, and practiced EFT. This may not have cured me physically but it hasn’t half healed my soul. It took a long time but I’ve forgiven those who hurt me, can meet them now and genuinely chat away and wish them well. I can look back on the good times at work and be genuinely grateful for the opportunities I had.

Yes I have M.E. but I can live with it, still find a real joy in life and am eternally grateful it’s not nearly as bad as some people I know. I’m also totally blessed that, although, I can get the odd ‘fed-up’ day, even my GP thinks it’s remarkable how I’ve never been depressed.

As far as the digestive issues go, they arrived like a bolt out the blue. I can vividly remember the first time (7th October 2008), it was a beautiful day, I’d managed up town and bought a few things I was very pleased with, I’d made a dinner I was really enjoying (I was always into fresh whole foods, nothing processed) settled down to watch one of my favourite TV programs and wham! Hospitalised because they thought it was a heart attack.

Since then the attacks have been completely random. They can come on when I’m tired; they can come on when I’m feeling great. They’re not related to any particular food (in fact no food is ‘safe’) I’ve had food intolerance tests done which showed up all grains but that’s easy to avoid. I tried various diets and when I finally went high raw that seemed the best I’d been on for my stomach. I read a lot and quickly came to the conclusion that I’d have to experiment myself to see what worked. I’ve never been hung up on it. Friends would ask ‘what percentage raw are you?’ and I would say ‘I don’t know, it doesn’t matter. It’s a way of eating not a religion.’

I went 6 months on a high raw diet, lots of juicing and green smoothies, went through some detox at the beginning, especially when I gave up my one addiction – black coffee, and really felt my digestive issues were over. Then wham, without any change in diet, I’m averaging 2 major attacks a week. Yesterday half a small glass of melon juice was enough to set it off. I’m finding coconut water a blessing. I’m currently living on that with, some days, a small amount of well steamed broccoli & cauliflower or a handful of blueberries. Unfortunately, I’m getting thinner and weaker the whole time. My GP, whom I get on well with, is really worried and wants to hospitalise me. I KNOW that’s not the answer, but I’m not sure how long I can remain at home without more help than is available. I feel too weak to try a water fast without supervision and can’t find any.

I’m not so much disappointed not to be raw as disappointed it isn’t currently working. Heck I’d eat 100% raw vegan or the Atkins’diet if it worked. I do love myself, I’m not by any means perfect, but I got over that long ago and still think I’m a pretty darned amazing person. I’ve always said the most important thing in life is to be happy in your skin, to be able to look in the mirror and genuinely like what you see in the eyes of the person looking back.

Annette, I’ve ordered one of the books you mentioned. I love to read. I couldn’t for about the first year of M.E. then found I could manage children’s books I’d already read then novels, now pretty much anything but I still struggle with some of the academic texts I used to love. Please don’t blame your chia pudding. I love food and your recipes are to die for.

Jax, I don’t know if it’s connected to IBS or not (I used to get that about 12 years ago but it was nothing like this) and I don’t care as long as it goes away. I’m not keen on medication but, certainly, none of the medication for IBS works.

However, I am convinced that somehow, someday, I will turn the corner and start to get physically better. I do firmly believe the body has the innate ability to heal itself. I just feel a bit like the Saw Doctors “Time is a healer, it heals all wounds. I hope it starts on mine real soon”

Thank you everyone for replying, you’ve helped build my confidence. This is a wonderfully supportive community. Thank you.

[Ruth]

Kirsteen. Thank you for replying. I am sure I am not the only one who has wondered how you are.

As it was said, we hardly ever have the right advice for each other, however loving the intention. The raw food community though is really supportive as you say; with open and loving mindset.

It sounds like you are doing all you can and the only thing left to do is sit back; trust in the process; watch; and wait it out.

And if you do have to go into hospital...well maybe that's the last hurdle to overcome.

[Jax]

Jax, I don’t know if it’s connected to IBS or not (I used to get that about 12 years ago but it was nothing like this) and I don’t care as long as it goes away. I’m not keen on medication but, certainly, none of the medication for IBS works.

Aye I found the same thing, they gave me antispasmodics then another course of tablets to counteract the other..............it was ludicrous and didn't make a blind bit of difference anyway!!!! I don't know how bad yours was, but I was passing out or near to with some of my attacks. Then of course you get more stressed out and panicky which exacerbates the problems because you don't want to be out and about when that happens!!

In a way I hope you're not hospitalised as lord knows what they will try to do, have you thought about contacting any leading world experts in M.E or IBS??

[Ruth]

hi again Kirsteen. Jax has suggested contacting a world expert. Here is the name and website address of the doctor who cured me from my bed-bound state to almost normal. ALL my digestive issues went whilst on his protocol and i need nothing further now than a good diet. These symptons were the first to go, followed by hormonal ones. After a few weeks on it I could eat normally again.

Sorry I neglected to pass this on before but I forget about those years in that state. it seems so far away now.

His name is Dr Nash Petrovic. He works in South Africa and sends the protocol out from there. You can contact him by email. The website is www.cfidshealth.com (http://www.cfidshealth.com)

CFIDS is his way of describing the condition. i.e chronic fatigue immune disorder sydrome. His background was research into AIDS. he treats anyone with this illness but specialises in the severly ill when no one else can help. I owe my life to his protocol.

Hope this gives you hope. in the very least he would answer an email you sent with advice.