Good Luck!

Good Luck!

Good luck to us all!

And may we swiftly find our own unique ways forward through these dark woods called autoimmune diseases into the sunlight of remission or at least low disease activity.

For some special diets and eliminating certain foods seems to work, for some this isn't an option because pre-disease they were on a 'clean' diet already or it just plain doesn't work for them. For some specific exercise regimes are a great help - yoga, tai chi (for me at present light rebounding work in 5-10 minute bursts 2-3 times a day is helpjing me - and now a group of you have just screamed & burst into tears at the mere thought of such foolishness! And rightly so cos rebounding would probably have you in searious global pain), others just keep on moving in simple daily ways - a stretch here, a roll of the wrist there - kneeding play dough with a little lavender oil in it helps my hands when I'm not in rebound health! Methotrexate is my one and only DMARD and to me it's the best thing since sliced bread - and others are throwing up, hitting dangerously low blood counts, high liver toxins etc on it and to them the cursed med is the devil reincarnated!

What I am trying to say is "be aware of the fact that what works for you may not work for me and visa Vera's. Please share, ask, respond so I can learn and grow from others successes but don't try and sell you particular success as a cure all to me or use it to imply that I don't take my personal health responsibilities seriously - the latter is offensive to me particularly as I live with depression, blepharospasm and RA whilst continuing to work full time - my health is my 'second job' and I am a very conscientious worker!

All the best

Ali

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  • Thank you SO MUCH for writing that comment. I too, find them offensive, these people who push their particular "cure" onto me as if I haven't tried hard enough to find a way of not having this disease. That I haven't tried this diet, or that exercise or that way of thinking. I've had this burden for nearly 40 years and I have tried everything suggested in that time. Some of it has worked, a bit, sometimes I've thought "This is IT!" only to be disappointed later.

    I'm thrilled for people who have remission, but a little voice says to me "They will cop it later" from my own personal experience, but I keep quiet and don't spoil their pleasure. But don't tell me what to do - I've tried it!

  • A lovely but true reflection off how RA. affects us and everyone is different in the way it effects us I think that is why it is so complicated to diagnose and treat as we are all different

  • Hi Ali---- thanks you sooooooo much for putting into words exactly what I have been thinking recently. Very well said 😊

  • Thank you for this. ❤ As I lie on the sofa with swollen feet raised and one hand useless in a splint, yet another post about how useless I am for not following a magical cure diet, has left me feeling tearful. I rarely get teary but I'm a wee bit feeling vulnerable as I'm flaring. Some people need to remember the ill humans behind the screen! Also just wanted to say that if I ever find a magical cure, it will always be 100% free. I would never profit off anyone else's misery.

  • You are so, so right Ali. It makes me so uncomfortable when all's been as the forum used to be for a few days then a specific diet is raised yet again. Is there some kind of diet credo they each swear on, I promise to promote & extol the virtues of this or that because it's the same each time. Just as you say every time we're not considered to be doing all we can if we're on meds, choose to be on meds. To use forums as platforms to tell us we're eating the wrong foods isn't what they were intended for.

  • Bravo ! I'm with you guys x

  • I've been trying to think of this in a different way recently. I considered how I'd feel if I found something that worked for me, and decided that I'd probably want to praise it to the skies, and tell everyone about it endlessly....even if (as Suzannedale once wrote) it was eating used kitty litter. I know that I do harp on a lot about exercise as it's been so essential for me, so maybe diet is a bit the same for those it's helped.

    So isn't really the main problem more when people's enthusiasm to explain what helped them tips over into rather too emphatic wording, or poorly phrased sentences?

    Hopefully we're all big enough to recognise the variety within this disease, and the positives and negatives of different treatments. So just need to recognise the variety in the way people express themselves too? After all, we don't have to read posts that we aren't drawn to. I know I don't read everything.

  • I hear what you're saying and agree. You are always sensible and pragmatic.

    There are regular posters on here who fully interact with others, show kindness towards those who are struggling, offer support and advice and post on a range of topics. I know they promote diet and alternative ways of treating RA but because they are kind and respectful in their approach and don't seem to make it their life mission to tell the rest of us what to do, it's a non issue. Then, there are there the few who shove "their way" down our throats and in clumsy wording, can sometimes end up being quite insulting. It does feel like drum banging because really, all they are doing is pushing their diet/lifestyle/programme.

  • Agreed crashdoll.

    For me, it's when it is pointed out to those few that their words/ tone of post is causing offence, they carry on arguing the point that there is some "fault" in those that choose not to follow said programme, for whatever personal reasons.

    Enthusiasm and excitement in sharing something that seems to work, I get and you're right HH, for some, this is will be the driver. For others, it doesn't seem to be the case and it is these few that I genuinely object too.

    Pity really .

    Marie

  • Thanks for that insight Helix. I think it is important to recognise that others have equally strong feelings for what has worked for them and in lengthier conversations do acknowledge that diet is not for everyone. I have felt pressurised by some contributors but not all. I'd prefer a 'diet thread' so we know what's likely to be discussed rather than have the subject popping up everywhere but I know I've been drawn back into the topic in other threads so may not have helped on that score. It leaves me feeling very unsettled and doubtful and I've only recently accepted that I cannot manage without Biologics. We all have to come to terms with our feelings on diets and drugs and it's hard enough without there being inferences that we're missing something obvious. The balanced voices on this agree that it's not straight forward.

  • I get so frustrated not knowing what way to help myself sometimes. But I always have this one question in the back of my mind that keeps me trying: "since I wasn't born with all of these health problems & I got them along the way in life, then there must also be a way to get rid of them". Anyway, that's what keeps me trying. 🌻

  • I'm annoyed that I can only press the "Like" button once......lol..thanks for posting.

  • Yes we share things that may work, but not all body types are the same. They absorb and distribute differently, are at different levels of health to begin with. Have different triggers, have different levels in which they are able to detox and process meds, etc. It is hard at times when you have had a huge change from where you were at and three months so different and improved like my Son, but again as mentioned this is a Journey and some get long sessions where all is good and others do not. Hang in there all, it is great the fourm is here

  • The voice of reason! Thanks Ali.

  • I have to admit that I tend to skip some of those enthusiasts' posts pushing their diet plans. I suppose I'm an awkward so and so. The more I'm pushed, the harder the toes go in. My loss I expect.

  • You forgot to mention that these wonderful diet cures are offered for a price. I always wonder if such and such diet cures autoimmune disease, then why isn't the person given the Nobel Peace Prize of medicine? ...Wow that would be an honour..... Just think good ol' Clint Paddison wouldn't have to tour as a comedian to make money...Doctors from around the world would prescribe his diet.

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