12 Living-With-Arthritis Commandments

stickywicket
stickywicket Member Posts: 27,697
edited 25. Nov 2014, 16:07 in Living with Arthritis archive
Like many of you (I know because you've written about it on here) I get tired, angry and frustrated by the regular posts about supposed ways of easing our pain and inflammation. The latest one referred to a survey of only 440 people. We were told 61% of them 'had officially been diagnosed with OA' ie nearly half of them hadn't. Yet the results were presented as if they actually meant something.

As an antidote, I present my own 12 Commandments:

1. Listen to your GP / rheumatologist / physio / orthotist.
2. Eat and drink healthily. http://www.arthritiscare.org.uk/LivingwithArthritis/Self-management/diet-and-arthritis
3. Exercise sensibly http://www.arthritiscare.org.uk/LivingwithArthritis/Self-management/exercise-and-arthritis
4. Don't smoke
5. Don't sit and think about pain
6. Concentrate on what you can do not on what you can't
7. Be flexible with plans
8. Laugh a lot, especially with others
9. Cry when necessary, especially with others
10. Don't google. Stick to trustworthy sites such as AC and NHS.
11. Don't try to interpret scans or reports on scans.
12. Don't believe 'surveys' or 'research projects' unless you know what constitutes a reliable one.
If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright
«1

Comments

  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I like it! I think that 12 needs modifying slightly to include 'if in doubt, see commandment 1'.
    It would be lovely if there was a miracle cure but there isn't and this forum is great for helping me and others live without a miracle and cope with arthritis. The last thing we need is to be told we should be doing more when I imagine most of us are following the commandments, hoping, praying and anything elseing that we possibly can to get every little bit better that is possible.
    The more I skim the diet related ones the more I think that it is a luxury of a, mostly, fully fed western society to feel that we can switch and change our diets and that will sort things out. I imagine if we lived in a country where rice was our staple with whatever else we could grow, tend or keep alive long enough to nearly fatten or milk, we might not be in a position to exclude or include foods and so wouldn't be so keen to seek a cure through food. I don't want lots of posts telling me I am wrong, I may well be and I can live with being wrong if that is the case, but from my perspective and from living with poorer communities in other parts of the world first hand, that is how I see it.
    Hey little fighter, things will get brighter
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    That is both a comprehensive and sensible list but may I add a thirteenth?

    13. Ignore the well-meant but basically useless advice from those who don't have arthritis. This may come from family, friends or complete strangers.

    DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Well done SW - they all hit the nail on the head, plus DD`s 13th. Having RA, I have been known to consult the NRAS website too on occasion.


    I find advice on diet extremely tiresome - we can do our best to eat healthily : surely everyone has a vested interest in doing that, but RA/OA can not be cured by diet alone, nor will it ever be, and I`m a bit fed up of being told it will.

    I`m equally fed up with a friend of mine who keeps suggesting I put mind over matter or try a faith healer.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    :lol::lol::lol: faith healer?! Mind over matter?! and my sister in law eating fried sprouts for breakfast because that is her new 'auto immune paleo diet'. All of these things are surely part of the 12 commandments of the arthritis snake oil peddlar. Sorry, I truly am sniggering at a faith healer mending arthritis.
    Hey little fighter, things will get brighter
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    These are wondeful!
    LV I'm with you, I am a Christian but didn't appreciate it when a visiting preacher said you could be healed if you had enough faith! My sister is also very into "healing" and seemed to take it as a personal insult when inspite of all the prayers at her Churches healing group, not my Church, I didn't get miraculously better!
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    brilliant SW...not sure if I have just seen this
    Ignore those that mock..not really mock.. but find it hard to believe you are not cured because of a new hip... :o
    Love
    Barbara
  • Nikkijamie
    Nikkijamie Member Posts: 34
    edited 30. Nov -1, 00:00
    That's great sw may have to put them on my fridge x x x thank you
  • Roadback
    Roadback Bots Posts: 35
    edited 30. Nov -1, 00:00
    Not sure I completely agree with just sticking to AC and NHS.

    Because of my own improvements with diet changes I feel that there is plenty out there being shared that we can all learn from. Google is dangerous but as long as you filter and add your own research.

    I tend to stick to websites such as ncbi, medical journals, pubmed, nature - and I can see that there is plenty of research that shows that autoimmune disease is not just the body attacking itself for no reason - and it frustrates me that the NHS pretty much ignores this.

    Just a question - does the NHS or AC support the view that treatment of latent bacterial infections or diet change plays any role in treating arthritis?

    BTW - I haven't been full Paleo diet for long period but I have dabbled - and it has helped me.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Good evening, sticky,

    Many thanks for compiling this excellent list :)

    I suppose the topic of diet and arthritis will always yield mixed responses, just depending on experience – or lack of it, of course :lol:

    Please may we add an item about getting a good night's sleep? Last night was rubbish and I've been more achy then usual for most of the day – decidedly 'nawap' really, but hopeful of being restored to 'awap' tomorrow...

    Hope you are awap, by the way :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Roadback
    Roadback Bots Posts: 35
    edited 30. Nov -1, 00:00
    Sticky - Just wanted to say... sorry and I didn't mean to sound negative but we are all different. :oops:

    The sentiment of your list is great and I can see your point - and I agree there is a great deal of ignorance out there that can annoy us all! :)

    Diet changes are not a cure all but can be a smaller of bigger part of the equation for some of us.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I like LV's, DD's and Barbara's additions and, as I did say 'stick to trustworthy sites' I'd definitely include NRAS in those, Tezz.

    I guess many of us have been prayed over. It's the most natural thing in the world to do when someone you care about is ill. But there is a fine dividing line between praying and preying. My RA has been a stubborn source of disappointment to several people :lol:

    Phee, I think it goes without saying we should and will get a good night's sleep whenever we can. Some things are out of our hands. I hope tonight is better for you.

    Roadback, you don't sound negative. You have a slightly different viewpoint and there's absolutely nothing wrong with that. I don't know what the NHS and AC's opinions are on treating latent bacterial infections. I do know there are some 'proper' pieces of research (There is also some utter garbage out there :roll: ) which suggest a connection between RA and gut bacteria. I accept that but I think it will be a long time before anything concrete comes of it. I also believe it is one piece of a gi-normous jigsaw and, having tried various diets / dietary supplements, I think it's not a good idea to concentrate on that one piece (tempting though it is as it is something we can at least control) at the expense of the rest. I hope yours continues to work well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Phee, I think it goes without saying we should and will get a good night's sleep whenever we can. Some things are out of our hands. I hope tonight is better for you.

    Thanks, sticky :)

    I hope you'll reconsider putting sleep on the list, but if not, it doesn't matter. I'm sure we can agree to disagree on this and other matters without resorting to fisticuffs :lol:

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    A lovely, but rather insensitive friend of mine told me that if I took up swimming every day as she does I would be cured. I wish that was the case but having osteoarthritis almost everywhere and also fibromyalgia I really don't think I could manage it. Most days just getting me leg in the leg hole of my knickers is a feat in itself never mind getting in and out of a wet swimsuit. :roll:
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hello bridesmum,

    Yes, it isn't unusual for people to come up with exercise 'cures', unfortunately :roll:

    I used to manage swimming once a week, when my joints weren't as bad as they are now. I liked being in the water, but I'd tense up as soon as I got out because it was so cold in the changing rooms. Then it took me ages to get into my clothes again and for at least the next three days or so I'd be absolutely shattered :|

    I think I had a course of hydrotherapy once, but one of the therapists came over impatient when it took me a while to get my shoes on and she ended up twisting my ankle :?

    These days I just stick with my physiotherapy programme, which I work through at my own pace :)

    Sorry to waffle on a bit! I hope you've had an okay day :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hello ArthritisProtocol,

    Do you have a nickname at all? Typing your name has made me feel as though I'm talking to a piece of paper or something :lol:

    Of the list you've made, I use just AC and the NHS. I find Arthritis Research UK useful from time to time – and not just because I'm on their publications review panel, obvs :)

    Here's the link for you: http://www.arthritisresearchuk.org/

    Take care,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I had a look on pubmed after it was mentioned on here and largely it seems to be a case that for a refereed journal article (so research papers that are rigorously checked, queried and refined by relevant professionals pther than the author before publication) you can only access the abstracts because for the full text you have to pay. Where full articles are available they tend not to be subject to refereeing and this aren't necessarily as rigorous or bonafide. That to me is a bit misleading so personally I wouldn't trust it as I might other sources.
    Hey little fighter, things will get brighter
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Well said LV
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • pot80
    pot80 Member Posts: 109
    edited 30. Nov -1, 00:00
    I am glad that you included physio in item one as since I am married to one it brought home to me when working through the list what a vital part her training is to my well being and I am no where near as badly affected with RA as many.
    Items 2 - 7 are all in her province.
    Item 8 Yes when I have a day out with friends.
    Item 9 Never had to.
    Item 10 Not a fan of the computer so does not occur.
    Item 11 Agreed heartily.
    Item 12 Surveys are the " smokescreens and mirrors " of life for half the population to convince the other half of something and should be marked for immediate consignment to the bonfire.It happens daily on the phone -
    "we are conducting a survey in your area"...
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hello pot80,

    I'm glad you like sticky's list too and I like your thoughts on surveys :)
    I had a look on pubmed after it was mentioned on here and largely it seems to be a case that for a refereed journal article (so research papers that are rigorously checked, queried and refined by relevant professionals pther than the author before publication) you can only access the abstracts because for the full text you have to pay. Where full articles are available they tend not to be subject to refereeing and this aren't necessarily as rigorous or bonafide. That to me is a bit misleading so personally I wouldn't trust it as I might other sources.

    Excellent, LV :D

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Thanks for the list SW.....its so right. :lol: {great grammar :lol: }

    Phee......I so agree with you about the sleep.{or lack of it} It makes such a difference to us the next day.
    I have quite a few restless nights and the next day I'm "ratty" have a headache, {no drink involved :lol: } and my pain is worse or appears to be. :wink: and I feel yukk and cant be bothered. LOL

    Sorry for that

    Thanks again Sticky

    Love
    Hileena
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Nice move, pot80, marrying your physio :D Why didn't I think of that?

    Phee, I think sleep will have to go in there :D I only left it out because it seems so obvious that we all do if we can and, if we can't, no amount of effort will get us there :lol: (though, I guess, a good, regular bedtime routine might.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bounce
    bounce Member Posts: 106
    edited 30. Nov -1, 00:00
    Stickywicket,

    I love your commandments, very useful to print out and to read at stressy times.

    My late mums number one rule was " dont let the beggers get you down, and if they do, shake yourself off and tell them to go away".

    And everyone should take an hour to do stuff which makes them smile, it helps with the pain.

    Cheers

    Julie

    X
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    pubmed: is that docs chatting in the local after their shift? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    bounce wrote:
    And everyone should take an hour to do stuff which makes them smile, it helps with the pain.

    I couldn't agree more.
    dreamdaisy wrote:
    pubmed: is that docs chatting in the local after their shift? DD

    Similar :wink: but I don't think you have to be a doc :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    You probably have to have been to a pub though looking at some of those 'research' notions.
    Hey little fighter, things will get brighter