If RA is supposed to be common ..why do people still ... - NRAS

NRAS

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If RA is supposed to be common ..why do people still ask me such stupid questions :/

Rockpool60 profile image
16 Replies

the best one yet is ...'you have lost a lot of weight'..I say yes..'what is your secret' they say

'not sure think it is my RA or my medicines that make me have no appetite' I say......OMG

I should have stayed with Slimming world and been slimmer of the year..have lost 4 stone so far since 2011...sorry for the moan..but know you lovely people will know what it is like ..gentle hugs to you all xxxx

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Rockpool60 profile image
Rockpool60
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16 Replies

Hi Rockpool i'm in the same boat. Can't stomach food much at all just now - have also lost 4 stone in 15 months but I did need to. I take it as a compliment but if they ask how I just say that it was easy for me because I lost my appetite with RA and now more so with the drugs. I believe in being honest and if people ask in a jealous way then I tend to want to put them right but I only say it if they really push and go on about how lucky I am and how hard they've tried and how jealous they are. I mean it's come at a very high price for us hasn't it?! TTx

Beth58 profile image
Beth58

ha ha This made me laugh as I remembered playing darts many years ago (when I could still throw a dart).

We were playing a team game in a local pub, there were 3 older guys sitting at a table watching the game, as I walked passed them to go to the loo one of the men stopped me and asked if I could settle an argument they were having. 'Of course' I said 'what's the argument over' I asked 'well' said one of the men, 'he said you've got a wooden leg and I said you don't cause I've seen you in a dress' 'so have you got a wooden leg or not'.

Well I wish I could have seen my face, I bust out laughing and said 'NO, it's definitely my own leg' at which point I quickly made my getaway and headed for the door as I walked away I heard this guy say to his friend "see I told you she didn't have a wooden leg".

On my return to the room the guys stopped me and offered an apology while also offering to buy me a drink, he then asked "why do you walk funny if you don't have a wooden leg", at which point I smiled sweetly and continued walking.

On returning to my team members who I must say, were quite concerned and asked what was wrong. When I told them the story there was so much laughter with me being thrown onto my back and my leg being held up on display for the whole pub to see it was very real.

Still laughing, so thank you for bringing back that memory.

Beth.

watson3 profile image
watson3 in reply to Beth58

I love your sense of humour. :-)

.Carolee x

Beth58 profile image
Beth58 in reply to watson3

and all true. xx

Hi Rockpool, as you say RA is "supposed" to be common but in fact it is not as common as people would have us believe. I was only thinking about this today when someone working with DWP annoyed me by saying she works with a few people who have rheumatoid arthritis and they manage to cope with working!! I believe while they may have arthritis it is unlikely that they have rheumatoid. On looking up some figures from NICE I discovered the following: "The prevalence of rheumatoid arthritis in England is 0.86% of the adult population or around 350,000 people." When you mention you have this disease people would have you believe every man and their dog have got it but at 0.86% I think it is unlikely the said DWP employee works with a "few" people who cope. I just wish more would be done to give this disease the recognition it needs so we could be better understood when we can't cope, lose weight or need help. To add my voice to the weightloss discussion I've lost 69lb since January but it has all been down to hard work counting calories and exercising in my case. I'm glad to say I still have my healthy greedy appetite :-)

Paula x

Beth58 profile image
Beth58 in reply to

Wow Paula thats an amazing weight loss. A massive WELL DONE to you.

On the subject of DWP, I attended my back to work interviews with ESA Work Related Activity Group. The advisor asked what was wrong with me, when I informed him I had inflammatory arthritis namely Ankylosing Spondylitis, his reply was oh I've got a touch of arthritis in my elbow and knees so I know what you have to go through.

I'll not go into detail about my reply but it wasn't very pleasant and certainly made him sit up in his chair and take note. These people are supposed to help get us back into work and they ain't got a clue about the different types of disability or the impact on one's mental health.

Beth xx

in reply to Beth58

Thanks Beth, I've never had the willpower to beat the bulge but there's nothing like a diagnosis of RA to shock a person into taking action :-) Well done you on giving that adviser what for, I wish I'd had you with me as I was more shocked, upset and speechless at their obvious ignorance. I won't make that mistake again!

No go for shock tactics next time as Beth and I do Paula - it's much more satisfying I promise! TTx

sheenerweener profile image
sheenerweener

well done on giving the so called adviser what for i would have to see the colour of his face lol,as to the weight loss well done to those that can and have, maybe if the british weather was more reliable we may be able to get out and about more thus helping our joints and our minds gentle hug to those in pain xxx

beaker profile image
beaker

well done for the weight lost, lm jealous l cant shift any, but as peeps have written RA is not that common and its never the same for anyone,RA affects peeps in variouse ways some can still work with it, some can work round it, others just cant, l myself feel weight isnt the answer, l know peeps who are normal weight even skinny have same RA problems as fatty peeps,its just the way peeps cope,RA is a evil thing to have, and the only way to cope is to fight it each day,its a battle lm afraid you cant win, but you can with will powern grit manage it,so when RA is kicking you the never regions smile and ask is that all you got .....

beaker profile image
beaker

well done for the weight lost, lm jealous l cant shift any, but as peeps have written RA is not that common and its never the same for anyone,RA affects peeps in variouse ways some can still work with it, some can work round it, others just cant, l myself feel weight isnt the answer, l know peeps who are normal weight even skinny have same RA problems as fatty peeps,its just the way peeps cope,RA is a evil thing to have, and the only way to cope is to fight it each day,its a battle lm afraid you cant win, but you can with will powern grit manage it,so when RA is kicking you the never regions smile and ask is that all you got .....

I think if you're fat when you start with RA then the psychology is that you blame yourself for getting it because you're fat I believe. That's how it worked with me at first but then it just became the most visible way I could show people that I was going through something big and life changing - and also quite satisfying when people no longer recognised me! And now I find it the best way I can keep control over something in my life at least - and with 2 stone left to lose it's not as if I need to worry about going the other way really is it?

You are right to say that RA affects us all differently Beaker - I know for me and another woman where I live we both just need to keep moving or we stiffen up so badly we can't. If it has already taken hold of you or comes on so fast then it must be much harder to push yourself with exercise and diet. I can imagine this easily because when I stop for a day or two I really suffer the consequences. Tilda x

SootyB profile image
SootyB

I'm really frustrated with myself, as I've put on the weight I lost before the pain hit, as I'm always too tired or achy or both to exercise! I need to work out a way of fitting some physical activity in somewhere, or I'll be the size of a house (rather than just a large bungalow).

I know what you mean about people not understanding, though. The patients I treat with RA or PMS understand, but the ones that frustrate me are the ones with no medical history who say they've 'got a bit of arthritis', so they can't cut their toenails! They can reach them, I've watched them reach them, but they use arthritis as an excuse. They're quite happy for me to do them, though! ;)

I'm getting cynical in my old age ... xx

bunny1 profile image
bunny1

i was a size 8 just 2 years ago,now im a size 12/14,im putting on the weight,all the drugs im taking dont seem to have stopped my eating,im so fed up im eating more than iv ever done,and cos im moving less im piling on the pounds, going to be huge if i dont stop,iv tried the grapefruit diet,egg diet,i do well,then just think.what the hell,i cant do anything i really want,eat chocs then get mad at myself,as for people not understanding,it seems everyone you talk to has a `bit` of arthritis,in a thumb,or wrist or something,feel a bit like kicking them with my arthritic foot lol x

SootyB profile image
SootyB in reply to bunny1

Oh yes, everyone you meet has 'a bit of arthritis', or 'gets tired a lot' - I don't know if they're trying to empathise, but it really gets my goat!

Sara xx

Neverwell profile image
Neverwell

When I was first told I had RA and had to drop my hours and job at work I was sitting having a break when this team leader asked what I had and told me her mother has arthritis and just gets on with it so I thought it must be me being lazy but reading all your comments I now know its the RA so thank you for putting my mind at rest x

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