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What is it about arthritis?

dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
edited 30. Sep 2015, 03:21 in Living with Arthritis archive
Having spent a week or so confined to barracks (thanks to my gorillas having a squabble) I decided to venture out yesterday afternoon for some fresh air and retail therapy. Agony but worth it and I felt somewhat cheered. Then 'Im Indoors returned from work and we went out for a meal. Agony but worth it and further cheered. On returning home I took out some recycling and bumped into an elderly neighbour (not the one with the new hip) who is as fit as a fiddle and wondered why I wasn't any better. Then came the advice. Had I tried? Have you thought about? I read about APOS therapy, it's brilliant (this from someone who has no arthritis anywhere). Copper is good, yadda yadda yadda. All my hard-earned cheer evaporated in an instant. Silly me for letting that happen but sometimes it doesn't take much.

Why does this happen? I know we've discussed this before but as I am currently under the arthritic cosh it took all my patience not to tell them what I thought. Of course they meant well and thought they were being helpful but . . . . The arrogance of the healthy is irksome at the best of times, at the worst of times it's hateful. The smug assumption that I'm not making enough of an effort to improve my lot ( I won't use the B word) is galling because it's based on ignorance. There is a difference between that and stupidity but I wonder if they would be so free with their 'advice' when confronted by someone with MS, cancer or MND. I hope they wouldn't so why are we fair game for their idiocy?

I can only conclude its the ubiquity of the disease. Everybody knows somebody who had a touch of OA or RA (don't forget, there are only two kinds :wink: ) and they got better. Of course they did because they probably didn't have it in the first place. Usually these comments run off me like water off a duck's back but due to being at an already low ebb this has pulled me right down.

Unthinking words hurt and far more than arthritis.

Last week was a matter of sideways and backwards but hopefully this week will be more onwards and sideways - if that's not progress I don't know what is. :) Time for scrambled egg with a fresh red chilli then ironing - hurray! DD

PS The B word is better.
Have you got the despatches? No, I always walk like this. Eddie Braben

Comments

  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    I guessed you were having a tough time at present, I do hope things settle down for you and you can get back to "moderately grotty ".

    It is frustrating to be "preached at", as well as hurtful and insulting. Insulting because it assumes we haven't already investigated/tried different remedies and comes from a combination of ignorance, mis-placed helpfulness, lack of empathy and fear.

    Ignorance of the realities of this disease in any of its forms other than the "touch of", or succesful replacement operation.

    Mis-placed helpfulness because they want to help but are afraid to ask how.

    Lack of empathy because it's easier to feel sorry for someone or feel they could be doing more to help themselves, and because they believe all the stories of benefit "scroungers ".
    Fear because they are worried about their "touch" of arthritis getting worse.

    I have actually stopped going to my usual Church after one too many people telling me I would be cured if I had enough faith and the final straw was being told I didn't need my crutches, if I threw them away I would be able to walk without them!

    And as for my sister and her comments about me "thinking it was not fair that I had become disabled in my 50's ", and that I"probably thought it should be her" ...well 6 weeks on and no apology I have come to the sad conclusion that despite my reply to this she obviously doesn't see what was so wrong about this.

    In the meantime we just carry on biting our tongues, smiling sweetly, and , usually, responding politely.

    Would they say it about other chronic diseases ? I think it varies with the disease and it's ubiquity and also how it is presented in the media.

    Perhaps you should have mentioned tripe therapy to them!
    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
  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    Good morning DD and Slosh,

    I'm feeling your pain and frustration and empathising from a place of having had a rough week with the various arthritic monsters within and being utterly fed up and frustrated with myself. ((((((( ))))))) sending you both some hugs and understanding.

    A wise broadcaster on our local radio station had a saying that perhaps sums up the situation:
    ' never put down to malice what you can put down to stupidity or ignorance'
    Those well meaning (or less well-meaning) individuals I am sure don't mean to hurt or offend us, but they simply have no concept of just how grindingly hard living with Arthur truly is. Even our nearest and dearest who live with us and see our struggles don't understand, though for myself I am eternally thankfully that I am blessed with a wonderful OH who does his best to cherish, protect and uphold me in the daily grind, but his concern sometimes becomes an extra burden because I try not to show him just how much of a struggle it is so as to save him worry.

    This group of diseases are wearing, unfair and frustrating, but at least on this site we have a network of companions on the journey to share and understand. But as you say DD, perhaps our biggest struggle remains with the fact that everyone seems to know someone with arthritis, and seem to think it makes them an authority on dealing with it.......how I wish they could walk in our shoes for a week or two, that would sort them I'm sure!

    So, today I'm with you DD, onward and sideways, upwards is way too optimistic to contemplate.

    Take care.

    Deb xx
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Right now I'm in a reasonable place, arthritically speaking, so my reply may differ vastly from similar replies, by me, on other threads when I was not feeling so good.

    And that's about the top and bottom of it really. When we're in a good place we can interpret things kindly. When we're in a bad place we can only see the stupidity, ignorance and lack of any kind of empathy.

    On the whole I think people are genuinely trying to help by making suggestions. I think my personal worst was “Have you tried Lourdes?” as if it were, essentially, a matter of programming God correctly.

    On reading your first paragraph my immediate thought was “Oh no! The last thing DD needed was to be kept standing on her achy knees and ankles.” The well-meaning blunderers often make things worse for us in trying to make things better.

    I think people are 'free with their advice' for all incurable diseases. I guess it's better than being free with their snake oils 'therapies' . Marginally.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • barbara12barbara12 Posts: 20,902 ✭✭
    edited 30. Nov -1, 00:00
    Sorry you are suffering DD..Ido think that people dont know what to say, so just come out with the first thing they can think of :? ..hope it ease for you soon..x
    Love
    Barbara
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Thank you, everyone, for your kind and understanding responses. The religious bit is interesting, I was told very earnestly by a 'born again' that accepting God (and thus ousting Satan who had taken up residence in my body) would ensure my return to full good health. That remains in the Premier League when it comes to stupid comments - I can laugh now but at the time I was rendered speechless (so NOT like me :wink: )

    I have just witnessed my twerpish-80-year-old-very-fit neighbour making a total idiot of himself but in far more costly style. Neighbour first in the queue at a T junction on a hill, waiting to turn right, holding his car on the clutch (you could tell as he would drift back then accelerate forward, drift back, accelerate forwards etc.) Driver behind him left some space (wise) and engaged his handbrake (no brake lights, no revving) then me. Neighbour tried to set off, stalled and rolled back into the car behind him at some speed. There ensued an argument (apparently the driver behind the neighbour was to blame because he had the temerity to be there) but they eventually pulled over for the sake of the increasing line of traffic and the hooting of horns. As I drove past I could see that the car he hit had sustained some notable damage, his not so much.

    The next time I see him it will be tempting to proffer some helpful advice about why cars have handbrakes, where they can be found, how to engage them, what they are for and how they could be used. Fair enough, yes? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    Sometimes people just do not understand and sometimes we don't always remember or understand this is so.

    I don't think people who don't understand should be accused of idiocy just because they have no understanding, but I agree when there is pain its difficult to keep smiling and pleasant when someone makes a remark that you would like to vent the short temper retort.

    Hope you are feeling some relief soon DD

    Its difficult coping with pain every day and it does wear you down. Just keep being kind to yourself and pamper yourself as much as possible. Forget about the irritations. It doesn't matter some people just don't understand, its the way things are, that's all.

    Enjoy some relaxing sunshine time while we still can. :hammock:
    flower2520paars.gif~c200
  • theresaktheresak Posts: 1,998
    edited 30. Nov -1, 00:00
    Sorry you are having a bad patch, DD - they keep on coming, don`t they?

    As far as what other people say, I think I`ve already said somewhere on here that I was told I should try faith-healing, in the sure and certain knowledge that of course it will work.My mother used to say that "if you can`t say anything good, then say nothing," but I find these days that people just can`t resist ` putting their oar in.`

    For years I sang in our church choir, only leaving because when the RA took hold, my voice ( not exactly Kiri Te Kanawa ) became unreliable, and in fact would disappear at times, and also the choir loft was up a very steep, spiral staircase. Each `riser` is about 12 ins deep. This summer, the organist said "why not come back to the choir? You`ve had a nice rest from it & should be raring to go." If only the RA knew that!!

    I think people do see it differently to other chronic illnesses - we are normally perceived to have a few aches and pains which at worst may be an inconvenience.

    I hope you feel better soon.
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    The next time I see him it will be tempting to proffer some helpful advice about why cars have handbrakes, where they can be found, how to engage them, what they are for and how they could be used. Fair enough, yes? DD

    Probably not but tempting. Ooooh so tempting.

    Tezz – have you considered levitation? It should be easier in a church :wink:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • HelenbothkneesHelenbothknees Posts: 487
    edited 30. Nov -1, 00:00
    If it's any consolation - and it probably isn't - they do it for other diseases too. A friend of mine got fed up with being told she'd fight off her breast cancer because she was always so positive. Eventually she pointed out that this wasn't helping because it implied if she didn't recover then it was her own fault for not being positive. I'm sure it wasn't meant that way, but...
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    What is it about human nature? I don't know, sadly.

    What is it about arthritis? I think it is that arthritis is an absolute blankety, blank BEAST of a thing! And, has nothing to do with letting in evil demons, etc.

    My first thought when I read your post DD was, "oh don't even get me started!" I have so many stories here. Far too many. At the top of the list and the worst was when my brother announced at his visit this year that "his doctor friend (a GP, not even a rheum) says that with people with PsA, you just load them up with methotrexate and off they go". All fine, done, everyone's the same and this guy must be right. So just what was my problem? As if I must be faking or exaggerating my symptoms. I guarantee I am not, and I have no explanation why PsA does not provide visible proof to those who are excessively skeptical of everything. Does it make them smarter? Uh, no. His comment was not well-meaning and it has dealt our relationship and trust a deep blow. That is what he accomplished, plus, pushing me further off into isolation. He wonders why I ignore his phone calls now. Surprise, I don't want to discuss it, or anything else!

    I had a conversation about this issue with my rheum two visits ago. In my case, it is hard to tell anything is wrong externally, except sometimes I can't walk and then I can mysteriously walk again, or it's my hands, etc, etc. I have a few knobs-on-joints and puffy tendons but these are not that bad so I guess it's easy to conclude I could be faking. As time has gone on, my OA has worsened and I have more of consistent limp but still, not very obvious. Anyway, my rheum thankfully has opted to believe me. This was no small thing in my book and, I am most grateful because it means I can try more treatments and hopefully get this beastly thing under control, despite how I look and my currently great blood results. Being believed by someone, and especially my doctor, has had a significant effect on me psychologically, I'm less likely to feel depressed and not put an effort in with regards to my own self-care. I trust him and respect him more because it took guts for him to do that. He had to trust me, not just rely on his medical training.

    I mostly talk about my illness to no one, except people on this forum, as it is just not worth discussing with those who really can't understand, who make judgements and generally are unwilling to extend a little trust your way. It's not worth discussion, I have learned. I just dare a healthy person to exist in my skin for one week and not cry bucketsful! If they only knew how bad it could be they'd take much better care of themselves.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I concede, Jen, that idiocy was maybe the wrong word but when tired, run-down, in pain and generally overwrought one's vocabulary and clearness of thought tends to go AWOL. Mind you, that can happen even when one isn't in any of those states, yes?

    Ah yes, theresak, the bad times do recur because they can and always will. My Ma took me to a faith healer called Harry Edwards, this was back in the late 60s when no-one truly understood the reasons that caused asthma and eczema but he was sure he could cure me. Oddly enough he didn't, possibly because he didn't try hard enough, or he believed in the wrong kind of faith, or more likely because he was a charlatan. My poor Ma, being driven to those lengths.

    Thank you for your post, Helen, it was pleasant to hear from you.

    Anna, I have to admit that I will tell my rheumatologist how things are but I don't bother discussing it at length because she lives with the theory. I rarely discuss it at length with anyone because, let's face it, it's a dull topic. We know what we face and how to deal with it but it's good to know that the safety net of the forum is here is needed, and this morning it was.

    People gauge a huge amount on visual feedback so working against me is that fact that my skin is lightly tanned, my naturally blonde hair somewhat bleached in places thanks to the sun, the psoriasis isn't visible, I do not have as yet any joint deformation and I am usually cheerful but sometimes the 'brave face' is just too tiring to wear. Today has been one of those days.

    The schadenfreude of my neighbour getting himself into trouble has been eradicated thanks to my GPs surgery once again telling me I am not eligible for a flu jab because I was not on the list (despite my receiving an invitation last year) then conceding I was. They also told me that I don't have asthma despite my attending their asthma clinic (not recently however due to no notification that it's happening) and prescribing my inhalers. I am booked in for 8.41 on Saturday morning - if it happens at 8.42 or later I will lodge a written complaint. I am not joking, because unlike the secretaries there I can keep records and press a few keys on a keyboard. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BruthaBrutha Posts: 51
    edited 30. Nov -1, 00:00
    It's infuriating when people can't see outside their own glorious bubble.

    These sort of people always remind me of that Sarah Pascoe joke...

    "I think I might be immortal."

    "What? Why would you think something that crazy?"

    "Well for one I have never died."

    Mark
  • GraceBGraceB Posts: 1,598
    edited 30. Nov -1, 00:00
    I regularly get told "you are very young to have this amount of osteo arthritis". Doesn't help - at all. In fact, it rubs salt into the wound if I'm being honest.

    DD - I hope you are feeling a little better now. I am thankful that it wasn't your car your near neighbour rolled back into.

    GraceB
    Turn a negative into a positive!
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    DD, I meant to say that I hope your gorillas stop fighting so hard soon. Maybe if they could just argue a little.....

    Best wishes.
  • prefabkid47prefabkid47 Posts: 1,314
    edited 30. Nov -1, 00:00
    Hi DD

    It's been too long since I've been on the forum,so back I come..... :D

    But what do I find...DD on a low ebb.............. :(

    All I can suggest is my usual advice........a pint!........... :wink:

    prefabkid47
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Well hello stranger, how lovely to hear from you - that's got my Tuesday off to a cracking start. :) I'm ahead of you mate, a smashing pint and a half of Timothy Taylor Landlord slipped down a treat, albeit on Sunday evening. That's been added to my list of favourite beers, namely Tribute, Black Sheep, Wherry and Adnam's bitter. We moved in late 2013 and our new local is not a patch on the Corpulent Cougar when it comes to beer but it does reasonable food: you win some and lose some.

    I hope you weren't logging on because things are rough - when we don't hear from people we generally assume that things are going well and I hope that's the case for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    This is true DD, hope you are having a better day today.

    Helen yes I agree. I think its when you appear to look ok so things must be ok. Again its all down to persons having no awareness, knowledge or understanding how different illness do affect people.

    A pint sounds good prefab :D
    flower2520paars.gif~c200
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Thank you Jen, I am but it's taken around ten days for that to happen and I could quickly lose it so I'm still pacing myself - I'm nineteen years in with one sort and four years in with both - I've learned a few lessons in that time.

    The diary is something we recommend to all who are new to this business. It's rather different for those with OA because that is more straightforward to diagnose and deal with whereas the auto-immune kinds are far more devious, cunning and sly. Both, however, are equally challenging to live with. Pain rightly frightens healthy folk, it's a sign that something is amiss and for many it's something that can be sorted by a visit to the dentist, the docs or an operation (though the recovery from that last option can be time-consuming). But the moaning before they do any of that - enough already! :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LignumVitaeLignumVitae Posts: 1,972
    edited 30. Nov -1, 00:00
    One of my favourite questions from those lucky enough not to be in the arthritic know is 'are you in pain right now?' I clearly need to work on my grimace and groaning. I tend to just nod in reply like a real trooper. :D
    Hey little fighter, things will get brighter
  • JenJen Posts: 155
    edited 30. Nov -1, 00:00
    I know DD, it was just on 4 months that last foot leg pain I had on walking (or weight bearing) and just as its easing I get the specialist rheumy appointment date given. Good job I kept a record of what was happening so I could describe it all. Still heard nothing from the physio, too late now I guess, but really need help to manage it when its happening, I have no idea if I'd had professional advice and treatment at the time if the pain and walking difficulty would have been shorter lived.

    I thought I was too long nearly 4 months not being able to walk properly and weight bear without pain. I read a lot on the exercises, and that's what I did with short very slow walks twice a day. and the heat pad, that helped a lot too when I rested with feet up.

    So glad you are feeling better today. It must be dreadful to have the pain constant for any length of time.

    It is difficult coping with pain, I need to ask about other pain relief options, the paracetamol did help a little but not much, but then I don't want to take anything that could cause bone thinning because of the Osteoporosis, still if I only need added pain relief now and then it might be ok.

    Thanks for chatting DD.

    Jen x
    flower2520paars.gif~c200
  • prefabkid47prefabkid47 Posts: 1,314
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Well hello stranger, how lovely to hear from you - that's got my Tuesday off to a cracking start. :) I'm ahead of you mate, a smashing pint and a half of Timothy Taylor Landlord slipped down a treat, albeit on Sunday evening. That's been added to my list of favourite beers, namely Tribute, Black Sheep, Wherry and Adnam's bitter. We moved in late 2013 and our new local is not a patch on the Corpulent Cougar when it comes to beer but it does reasonable food: you win some and lose some.

    I hope you weren't logging on because things are rough - when we don't hear from people we generally assume that things are going well and I hope that's the case for you. DD

    Hi again DD

    Thanks for welcoming me back to the forum, it's a bit like coming home to the family.The members are so supportive,you don't always appreciate this fact until you return after being absent for a while.

    As to the subject of beers...... :D.I am rather envious of the range of beers you've sampled recently.Our watering holes are dominated by Shepherd Neame (though Spitfire and Masterbrew are very palatable when in good form).Usually have to go to Wetherspoons to get anything different.

    Incidentally it's over 4 years since the ankle replacement.All appears ok with just the occasional discomfort (this is probably due to RA in other parts of the foot).

    Will try and post more regularly!!

    prefabkid
    ''Beer is proof that God loves us and wants us to be happy''. Benjamin Franklin (1706-1790)
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    It's always pleasant to read a familiar name, I am pleased that things are generally going better for you and I hope that lasts. I knew it was some time since the ankle but had forgotten about the RA - I apologise. :oops: I don't leave because they're never good (not in the usual definition of the word) which makes life so much easier because I know where I am and what I'm dealing with.

    We are fortunate in East Anglia in the range of local beers on offer plus the huge number of real ale establishments who make the effort to bring in beer from other parts of the country. Directors and Spitfire have appeared at the new local (The Woolpack) along with Black Sheep, Woodforde's Nelson's Revenge, Once Bittern (a splendid drop) and a wide variety of golden beers (currently Mr DD's favourite) such as Brewer's Gold. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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