Date: 26.04.2011
From: mads
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Subject: a bit of a rant
hello all i just am going to rant hope you don't mind - i have ra and the last month it has got real bad, not on metx yet, end of this week hopefully. Anyway i am hobbling, taking a long time to get up, fingers don't work you all know the pain and inconvenience of ra. Why do so many people feel it is their right - these people are friends and family members - to tell me in various ways that it is my bad diet, my lack of exercise, that i am not keeping care of myself, basically it is my fault that i have this bloody awful thing. Alas i am overweight and about 2 stone of it has come on in the last year so people who haven't saw me in that time are putting my poor mobility down to being 13 stone as opposed to the ra contributing to the weight gain. AHHHHH it is hard enough coping with this without being told that i am to blame - that is not what the literature says - I feel like bringing around the little information booklets and making them all read them. Or those that say - yeah my 82 year old grandmother has arthritis in her hip and got a replacement you should see if you could get that. AHHHHHHHHH i get so tired and upset. For anyone that has read this sorry for going on so long and believe me i could go further!
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Date: 26.04.2011
From: KayJay
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Subject: Re: a bit of a rant
Good rant Mads !! Spot on when you get the " oh my grannie has that etc " it dosn't help when you are much younger than their grannie !! Just try to ignore this - they will never understand your pain unless they have had the same type of arthritis. And how the heck can we exercise when we are in agony !! Strewth it does make my blood boil - they should engage the brain before speaking !! Have you been referrd to a Physiotherapist or Occupational Therapist yet ? If not it might be good for you as they are very understanding and can give you aids for your hands etc. Just ask the Rheumatology Nurse or Doctor to refer you.
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Date: 26.04.2011
From: jon
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Subject: Re: a bit of a rant
Hey. Like me, before I was diagnosed with pa, I knew nothin at all about arthritis. I know know a great deal but also realise that KNOBODY else knows anything at all about it. It is VERY frustrating. Even more so when u try to explain to ppl but they still don't understand it or appreciate how drastically life changing it is AGHHHHHH!!! I feel your agony! I'm on enbrel atm, things seem to be going well on it. I hope your mtx works for you! Good luck and keep up the fight.
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Date: 26.04.2011
From: mads
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Subject: Re: a bit of a rant
thank you for listening and contributing i have got a multi disciplinary team but i am just at the start so i guess i will be in touch with them all quite soon. I sounded a bit woe is me there - i am not looking sympathy from my f&f just a bit of common sense. but thank you again.
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Date: 26.04.2011
From: Gaynor
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Subject: Re: a bit of a rant
Oh hon ... the harm people do with their "helpful" word of ill-guided wisdom. My partner has M.E. and has had it for 20 odd years. The number of helpful relatives who say really hurtful things is just not fathomable. You go girl --- have your rant. And maybe ... one day when you are feeling particularly strong and just p*ss*d off enough .... let the people who are saying this stuff have it with BOTH barrels. Sounds like they need to know how much they are hurting you girl. I've decided there is no such thing as common sense with the amount of STUPID things that people say/think to and about people with disabilities. Here's a good idea. Tell your helpful people that you have decided to be helpful back and give them a crash course in how it feel to have RA. Then tape tacs, pin side up, on the soles of their feet. Bash their ankles and wrists with a hammer till they are suitably red and swollen. Put hot coals along their spines and wrap them in tin foil. Then laugh gayly and tell them you expect them to carry on with their daily lives - oh ... and don't forget to eat healthily and lose weight!!!! Oh and the big one ... THINK POSITIVELY and all will be well. BA HUMBUG. I'm with you on this ... can you tell. Not that I'm a sadist or anything!!! ha ha. (PS: don't really do this .. they will lock you up!!! It's a tempting thought though isn't it?)
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Date: 26.04.2011
From: marlene
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Subject: Re: a bit of a rant
I second all of that Gaynor. My pet hate is "i know exactly how you feel" (is that so). After my back surgery words of wisdom, "oh well its all over now". (if only). They said that after my elbow surgery many years ago.(just the begining) I know they say all of this thinking it is helpful but it is the total opposite go away and leave me in my misery if you have nothing helpful to say. Oh yes and a family member suggested a good gym might be the solution, (i wished). I dont suffer with RA but with OA with joints that also swell but i dont pretend to know how you guys feel. I couldnt even begin but i have days when i could scream the place down. Well thats my two pennies worth. None of us look for sympathy just a little more understanding!!!!! X
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Date: 27.04.2011
From: mads
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Subject: Re: a bit of a rant
ahh thank you for that advice really like the hammer solution. you never know if you hear on the news that a mad woman is running around with tinfoil and pins, you will know that i have got royally fed up. I can laugh at them today, i feel supported and now part of this family and we can scoff at them together!!!!!
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Date: 28.04.2011
From: cookie
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Subject: Re: a bit of a rant
Lol@ gaynor i shall be looking in all of the papers for a mad woman on the loose like a scene from misery lol
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