I've just watched the above programme on my BBC Iplayer app and it's quite interesting!
Ali
Clean eating's dirty secret!: I've just watched the... - NRAS
Clean eating's dirty secret!
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Ali_H
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Omg lol the thing is I wish I could eat healthy, I'd love to be able to grow my own organic food and live off the land ....but I have rheumatoid arthritis, I can't even open the packets of veg I have to buy sometimes, I've stopped altogether buying fresh because my hands and knives are not a good idea.....I wish lots of things and I wish I had some help to do these things....but that's not gonna happen, I'm grateful to get myself up and to the toilet, it's a huge achievement if I can get up the stairs for a bath once in a while, sometimes I'm just glad if I can speak and breathe at the same time as my lungs are affected too. I swell all over and have no options but to live on Prednisone. Ive tried every diet supplement and "miracle cure" people have suggested and if it were as simple as diet we would definitely all be doing it because no one would chose to survive through this pain. I believe in being as healthy as possible, I've tried to reduce the amount of chemicals in my household and do take omega 3 fish oils and multivitamins and I love a good smoothie. I can't afford to buy all these crazy priced organic health foods as I have four children and a foster child to support and I am unable to work due to the full disablement that has happened to me. I believe in common sense in all areas of life. But every health conscious gym crazy eat clean freak always seems to think it's ok to tell me that I would be ok if I just ate better. They assume my swelling is fat, I was always rather anorexic and 8 and half stone until I was struck down by rheumatoid arthritis, I doubled in body weight in 4 months....that wasn't because I ate bad...
Absolutely. If it was just easy to beat this disease with diet the NHS could save billions by prescribing veg boxes weekly!! A good diet can help to give your body the ability to cope with the medications we have to take But I get thoroughly p**d off with people who, without appropriate knowledge or training tell me I will be cured if I follow the fad of the day.
We are so lucky to have the modern medicines that have in a few short years emptied rhe RD wards, and saved us from grossly distorted joints. So the next person who tells me that I should try dessicated this or herbal that BEWARE!!! Even if their aunts friends motherinlaws butcher .was cured in two weeks!!! ..........and has just taken up sumo wrestling........ENOUGH!
I know your reply was serious but it did make me laugh. I am the same as you and it's always someone without RD who seems to know best xx
MaryTH, you are soooooo right. People who can stand up straight, run up a flight of stairs and are also 23! I could do all that too when I was young. I could do that up until I was 59. They just crack me up. Some I do know mean well and I keep my mouth shut but the others who just know everything and nothing at the same time.......don't t start me......
Without a doubt so frustrating x
Before this thread descends into yet another meds vs diet (heated🙂) debate...
...did anyone actually watch the link from the OP?
It seems to me the point was more that any old fool can call themselves a 'nutritionist', set up an Instagram / YouTube account and tell the world to eat grass. And a significant proportion of those that do could be considered by some definitions to have an eating disorder (the 'dirty secret' of the title).
Qualified MDs, dieticians, gastroenterologists of the sort linked by Kai-- do not fall into this category. They are not pushing a 'trendy' lifestyle choice, they are offering advice, based on sound, scientific research and multiple studies of various types. Not pseudoscience.
The NHS will never try to treat RA with 'veggie boxes' because most people wouldn't eat them, and besides it isn't about just adding 'extra veggies' as much as cutting out other stuff and avoiding certain lifestyle triggers. From the little I understand of it.
Of course, there's a multi-million dollar industry created off the back of this kind of dietary advice, blame capitalism. We need money to exist, we have to make money, people are there to be exploited. We are all human resources. But as said above, you don't have to spend £6.50 on half a loaf of spelt sourdough bread in a trendy shopping street in the most expensive city in Europe. Just buy cheap, healthy real foods and avoid all the processed crap. It's much cheaper to buy raw ingredients and not eat meat (if that's what you choose to do) than it is to have bacon for lunch and steak for your tea. So cost is a red-herring.
And yes, modern drugs have been very successful in addressing a lot of the worst of the damage caused by inflammatory arthropathies, but wouldn't it be nice not to have to take so many for the rest of our lives?
Just my take on it.
*dons tin hat*
Ade
Very well said Ade!!! Thank you 👏
See that's sensible.
Don't give up Kai...we are with you!! I think Ade has put it absolutely perfectly it is completely my take on the Meds Vs Diet debate that forever rumble on here! X
You can't have "life" in a forum & expect everyone to agree. Therefore it's not necessarily misconstrued, rather those who do react do comprehend & merely don't share the same views, they're as much at liberty to say so as whoever else posts. I can only think the forums posted on previously didn't have as many regular contributors who were informed enough to form & share their own views. Then when we're basically told we're stupid, well........ it's not the best way ingratiate oneself is it?
Who said who was stupid?
Oh, come on, "I pity the fool", "stupid is as stupid does"! You've not seen them? Nobody else has posted such links, granted one was removed, maybe just as well.
I've not said at any point that anyone can not express an opinion, I just feel there's no need to be quite so rude about it...I think Kai has just reached breaking point and I'm prepared to stand up for them...it's late, very hot and I've got work tomorrow 😶 Good night
I wasn't referring to you 3LB, it's not your style. Merely pointing out rudeness if that's what it is & something nobody else here does. The "no cure for stupid" link was deleted but I took a screenshot.
You are absolutely correct nmh, I think what sometimes seems to happen though, and this is just my take on it 😀, is not so much a difference of opinions as a flat refusal to entertain certain ideas / theories / hypotheses.
If people wish to sensibly debate an issue they are 100% no questions asked entitled to do so, but the pattern of events I see is one where an interesting hypothesis is floated, backed up with credible links to 'proper science' (not Pinterest😉) and it is then nay sayed by folk based solely on their opinions - almost always without even having read the links!
The same old comments about if it was 'that easy' the NHS..., I eat muesli but I've still got it blah blah.
If folk did actually try reading some of this stuff, and doing their own digging they may well find some pretty good counter arguments to a lot of the points made; but they don't! They repeat the 'same old' every time.
It would be genuinely interesting, stimulating and who knows even maybe helpful to have a reasoned, thoughtful debate, but instead it always descends into a dogmatic rehash of every other thread on the subject.
I can recall lots of people disagreeing with Kai's stance, but I can't recall a single reference / link to any counter arguments ever being made.
Why do people think Kai tries so hard to push the message he so clearly believes in? What do folk think his motive is? Is he an organic farmer maybe with a monopoly on veggie boxes?
Or is he someone that genuinely believes that a lot of people suffering in a way that he is intimately familiar with could help themselves if only they'd do some research of their own.
That is just my take, I am not someone that follows faddy diets or wants to give up the things I enjoy, but I'm prepared to accept that there just may be something in a dietary approach, and until I've properly tried it I will reserve judgement.
It clearly works for some.
Ade
I wholeheartedly agree Ade & did read the link Ali referred to, in fact I wrote a reply to you but decided to not become drawn into it as it's already been said. I am interested, even if I wouldn't choose to implement the more extreme ideas. I don't read the links any more even though I'd like to interact but as my replies have been ignored in the past there's little point, seems I've been wiped!
You probably won't appreciate this so much being reasonably new here but it's divided the site to an extent, we rubbed along well. Quite a few members choose not to post as frequently as they once did. It has changed, it happens & it's a shame, the likes for hatshepsut's reply are from some of them I'd guess. Stupidity, ignorance, fear, if that's what is thought I'd rather not become involved.
Hi nomoreheels
I'm getting the picture😀
It is never my intention to cause any upset to anyone on here or anywhere else. Sometimes we may say things that get misconstrued or read with emphasis in a way that wasn't intended.
If someone disagrees with me on a forum then all well and good. I'm happy to defend myself and admit when I'm wrong in equal measures.
I guess sometimes I forget that others may take things more personally and even typed words from a stranger on t'internet can cause upset.
It would be a crying shame if a topic so relevant to us all became taboo, who knows evidence might emerge that it has nothing to do with what we eat...
But if that is the case there must be something else about the way we live our lives in the modern western world that is triggering all of this misery for so many of us.
I know for me stress was a causative factor, and I'm pretty certain that my 20s weren't entirely blameless. 😎
It seems our bodies can only take so much and then, well we all know.
But nobody should feel guilty or that it is their fault, none of us knew / know to this day what the full reasons are. And if we did some of us would still have taken the risk I suspect. Myself included when I was younger and ignorant to the realities of living with a chronic condition. Or two. 😳😱
I hope everyone enjoys the rest of the three days of summer we're getting this year. 😎
Problem is when the weather's like this I could murder a nice cool pint or five. 🍺🍺🍾🍸
Regards to all.
❤️
Hiya Ade. It's something I've said before when someone's become hot under the collar, you can't hear intonations when typing & that can lead to all sorts of misunderstanding. It's because of this I question first rather than go headlong into a diatribe, if someone else doesn't it's hardly surprising communication breaks down, even worse ignores the fact you've taken time & consideration in replying whether it's in favouring the subject or not. Nobody in their right mind who copes with stuff as we do would wish further ill on a fellow sufferer.
It is a relevant topic, one we all have an interest in, you can't put diesel in a petrol engine & expect it to work. But I'm not sure it's all down to the modern world, generations before us had it, my nan for one & she didn't eat rubbish. Neither did she eat processed food, they weren't available in her day but she did eat fat, it's an abiding memory of mine that she used to eat the fat off my lamb chop & loved bread & dripping, urgh!
Stress I'm sure could go a long way to explaining, though I was the least stressed I'd ever been when I was diagnosed but you don't know what had an effect years before, or even how long it had been grumbling away waiting to explode to the surface.
Enjoy what remains of the lovely sunshine, some find it oppressive but I've enjoyed it, takes me back to the long summer's living in Spain, until the gotta fria came, then it was hellish on the joints. Payback time!
I can literally vouch personally for the diesel / petrol analogy. 😬
At least I didn't start the engine though.
You're answer doesn't make sense to me or what is going on with me so I won't reply to what I cannot fathom
It takes courage to be "different" who wants to be a sheep...not me!!
Hi,
Wow I was not expecting to open all that lot up I just genuinely found the programme an interesting cautionary tale.
Re NHS and clean diet maybe some of the issue around the lack of dietary advice is that we as patients are not actively asking to be referred to a qualified dietitian - I certainly haven't but within weeks of diagnosis I'd got physio, occupational, counsellor therapy input all instigated and asked for by me. I also had podiatry and orthodontist input and I am now sat here wondering why I haven't asked for a dietician referral. Maybe it's time I did!
All the best on this lovely English summers day 😎
Ali
What? Not up to speed with the latest... I'll have to ask lots of relevant Qs and hope s/he is curious enough to go and do the research etc
I find myself watching quite a lot of foods stuff at the moment... whilst sipping strong coffee and munching on double choc bickies! 😂
Have a fab sports day - plenty of sunblock all around today and maybe a water fight after!!!
Ali
I don't quite know how to respond, the above reply was to Ade but I didn't want you to think I hadn't read or was ignoring your reply.
I would never think that...but it's how I feel...just sad that people who are different or don't follow the norm are met with scorn or ridicule....enough said by me now...I can't put my argument across quite as well as Ade who I think sums it up absolutely perfectly! 😶 From now on.
Well, I'm sorry it's how you feel, but it's why you feel that way towards me I just don't understand, that's why I don't know how to respond.
I think I may have posted my first reply under yours!
Omg so long winded, I was being sarcastic clearly. As you clearly haven't noted I do eat healthily and very clean and have spent the last two years researching everything about my diseases and medication and what might or might not be beat for me to live my life to the best of my ability. I don't need to be told all of this information every time I post on a health board. I already am living that way. What my point was is that I am currently dying. I am currently also and have been for two years been eating the very best diet possible, using the supplements prescribed by my specialists to ensure all that is ok. I agree with all you all keep saying, I've done everything I needed to in order to try to prevent this battle ending this way. Even when I'm telling you all that I'm doing all this you are still telling me that my negative attitude and unwillingness to follow your philosophy(even though I do live by that) is what's really making me so Ill, that if I just do these hundred commandments it will all be ok....it won't!
Mind you trying to read through all what's been said and accusations thrown my way I didn't even click that you would all assume I was having a go at your lifestyle, as I said it's the lifestyle I too jumped on board when first diagnosed with RA. Anything I thought might help was worth trying....I'm quite shocked really that none of you can understand how frustrating my situation is, I'm not hear now to hear the millions of pieces of advice ive already garnered from these forums such as which diet would be helpful with my clnditions or which supplements would make my body run better, I came back to these boards looking for people like me who I could talk to about what's happening in my life. So sorry I've caused offense to you all in this subject and I'm very happy for you all that you have discovered and are sharing the good news of how to cure these diseases all round, I'm very glad for any of you having success with that, I do everything I can to ensure my children have the healthy diet and lifestyle my I'll health has bought about, I hope to god it prevents them ending up like me. Good luck to you all
I also should point out I'm waiting for referral to dietician and physiotherapist right now, I'm also waiting for referral to hematologist for something wrong with my lymphocytes and also awaiting the community respiratory team to come to my home. I've been under occupational therapy for some time, I'm waiting for a house move into more suitable accommodation, I'm under pulmonary consultant and Rheumatology consultant and colposcopy clinic.....I'm doing everything in my power and to be honest I can't see I'll even make it to a dietician meeting should I finally get an appointment, my point was it all seems incredibly futile at the moment and I'm being bogged down by massive comments regarding my diet etc when really at this point all I needed was a little emotional support and someone other than my kids to listen to how I feel about dying....I'll leave it there I think, I'll stay on other boards and personal messages
...sorry again for causing a debate on someone else's interesting post
I've also tried to give you the decency to read your entire rhetorical of derogatory comments and suppositions but honestly I can't get to the bottom without feeling suicidal so sorry but I cant
Nice I do admire your phrasing and philosophy and if I were healthier I'm sure I'd be able to make much more sense of it all, but I just don't have the energy, but I understand the gist and do appreciate where you are coming from, I think you take me quite wrong. You campaign with fervour and good on you too, I would love to be a positive force for well being. Currently it's not what I need to hear.
I understand it really is my fault my situation is extreme and pretty dire at the moment, I'm swelling grotesquely and very painfully as I'm currently off my Ra meds and im probably incredibly over sensitive, my brain isn't functioning the way I would like it to, I can't take in every piece of information I want to and am crazily trying to seek some answers and help. It's hard, I can't really even speak on the phone as I will simply become breathless and I can't really keep talking with my kids about all that's in my head, I'm writing lists of what needs to be arranged. Slowly making contact and being contacted by the right departments to get the help I need, I don't blame anyone for not understanding what was going on with me, I just find that everywhere on these boards, it's always all these options and I do respect those options but they aren't right for me at the moment. I apologise for causing an upset my emotions are not too good I guess x
Hi orchidcass
I'm truly sorry to hear you are not in a good place at the moment and sincerely hope none of my comments have upset you. If they have all I can say is I'm really not worth getting upset over (although my wife may not agree 😳). Then again she may....
Please believe that nothing is your fault and you haven't upset anyone.
I fully understand the difficulties of coping with children and chronic conditions and with everything else you have going on it must make things very difficult.
I hope you find the answers you are looking for soon.
All the best.
Ade
Hey Orchidcass,
Sounds like your in a fairly crappy space at the moment so 'information overload' is probably an all to common sensation right now - the best advice I got when struggling (with my depression) was 'let it all go for most talk is nothing more than moving air and most information a transient notion and take solace in the fact that if you are still breathing then there is more right with you than wrong... It just doesn't feel that way' I cocooned myself after receiving that gem and slept loads.
Take care of your self
Ali
Victoria-NRASPartnerModeratorNRAS
Thanks Kai
It's not always possible for people to contact us by phone, but the NRAS helpline team can be contacted by email: helpline@nras.org.uk. This is better than contacting one of us by PM on HU, because we aren't all full-time, so sometimes there can be a delay in us getting back to you this way.
Very happy to help you Orchidcass or anyone else wanting support or information.
Victoria
I apologise completely as well if I've caused offence to anybody...I wasn't aware fully of your situation Orchidcass as were none of us. i just came out in defence of a subject I am personally interested in. I wish you all the very best.
Thank you all its fine honestly "information overload" is spot on to be honest in all areas at the moment. I will be ok, I really shouldn't have allowed my personal issues to come into someone else's posts. All the points I have seen have all had some valid notes....no one could know what was going on with me and I know that all such advice is always given with the kindest intentions. Undoubtedly there are people who need to be told. I don't think I'm one of them :/
See now, what did I say Orchidcass! There are caring people here concerned for you, just occasionally people don't think about how poorly someone may be at any one time & how words can hurt to the point it all becomes overwhelming so please stay around. x
You girlie can hijack my post to express yourself and your needs any day of the week... Anyone who can raise a family and live with this has my total respect.
Good night
Ali
Lol thank you guys, I do really appreciate it x
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