Frustrated !!: I am going to get cards printed to hand... - NRAS

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Frustrated !!

Rockpool60 profile image
10 Replies

I am going to get cards printed to hand out to people who keep asking stupid questions about RA....I am a newby..almost 1 whole year has passed and I am still fighting my corner which now has left me resentful and uncharacteristically grumpy.

Any ideas on how to move forward and find my MoJo again ..thanks and gentle hugs x

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Rockpool60 profile image
Rockpool60
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trace65 profile image
trace65

Hi, I just try and remind myself that I too knew nothing about RA until I thought I may have it . Hopefully a few more people understand a bit more about it now I have had to pass on what I have learnt. If all else fails count to 10 and deep breaths.

Tracy xx

Rockpool60 profile image
Rockpool60

Hi Tracy. Think I have got very little patience now...I never knew anything either but was never quick to judge. I do count lol..but sometimes I think I might need a huge stress ball.

Thanks for your comment. :D x

trace65 profile image
trace65 in reply toRockpool60

And use the ball to throw at them!

Hi,

I cannot remember life, or barely can, without RA. All I know is frustration and grumpiness seem to be part of living with RA. Only when drugs are working and in my case a low dose of anti depressant, do I manage to stop thinking about myself and relax. Regarding others, I have always found that even closest family and friends have little idea of how RA feels and affects one, and seem to think it's the only subject I am interested in talking about. I try to smile away in public and fume at home. I haven't got an answer for how to ignore RA, but getting the medication right is a really important part. Hoping you feel a little more positive soon, perhaps Spring might arrive and help. Take loads of care.

Jennyx

Rockpool60 profile image
Rockpool60

Hi Jenny. Thank you for your comment. I am generally a positive person...glass half full ect but at the moment I feel beaten by the illness and all the querks that it seems to manage to pull. Take care too. Fiona x

Oh dear poor you Rockpool. I do understand but I feel a very untypical RAer a lot of the time so my indignation is more on behalf of others - unless I'm feeling lousy from the drugs or desperate for a stiff whisky or a g&t- and then I can get a bit evangelical on my own behalf even!

When I was in a lot of pain I would just laugh it off rather manically because I found it so extreme and bizzare that I would opt for the darkly comedic approach - which some people found hard to cope with where others were better able to relate. Like yourself I've never been one to judge when people told me about stuff they were experiencing - my curiosity has always been insatiable so if people have a condition I've not heard of or know little about I would tend to quiz them in order to learn more.

I only really knew one person, a neighbour, with RA personally, and she was old so I did assume that it was somehow related to age. When she died of RA related lung problems I learned from her husband that RA had affected her for most of her adult life and it did explain a lot. This meant that when my GP explained that he thought I had RA I did know it was the one you really wouldn't want for love nor money.

I think it's best to approach the subject of RA on the basis that people won't know about it but I do feel strongly that they probably should want to know more in case it ever affects them or their loved ones. So I sometimes go for shock tactics and have even snapped at a few people whom I feel should know better when they show me their thumbs and say something ridiculous about all of us ageing. Because it's not my normal way of dealing with things I find that those who know me get quite a shock and sit up when I do this but I try not to lecture people because it's so off-putting and I don't want to become an RA bore.

If possible it's best to keep our friends within the loop I think because, sympathetic or not we all need friends - and not just for offloading about our disease but sometimes for escapism and fun too. The ones who I know to have strong views about my RA and who take a keen interest I include by sometimes emailing them copies of my blogs on here so they are at least in my loop. This means I don't need to talk about it to them when we meet - unless I want to. And then, and I do find this as hard as Jenny at times, I make myself listen to them and hear about their problems and advise accordingly. That way I know that if and when I really do need them to advise or listen or give me love or sympathy - then I can call on them without feeling guilty. If they don't give me what I'm needing despite me having been generous to them then I cull them from my friendship list. But I do believe in at least giving people a chance and I think to myself that this will help people to understand RA better too - if I can inform without lecturing and receive without failing to give back. With my OH and sons I tend to take a back route because they do mock me if I talk about RA too much "oh here she goes again!" sort of thing. My husband admitted that he spoke about me to one of his colleagues the other night and it was a real eye opener for me to hear how he felt indirectly. He said I seem to expect him to read up and know about RA but whenever he tries he gets too depressed and upset on my behalf to do so for very long. He told her (and then told me) that he finds it really hard to know what to advise when I ask him because I've become such an expert and he doesn't want to influence me in the wrong direction. Sometimes we need to hear how those who love and care for us perceive our disease too I think. Hope this helps overcome the grumps in some way - can't quite think how really but I'm always good for a waffle! Tilda x

Heya, oh I know about grumpiness alright :D But mine came mostly from the steroids, I am prone to bouts of the old 'roid rage unfortunately.

I've been going through the same sort of feelings you have but have now achieved some sort of zen-like calmness about it (much easier to do when your meds work I know!). I look at the things I gained while having to deal with RA instead of dwelling on what it has taken away (which is unfortunately a whole lot). For example, I am much more confident now, having had to put up with morons who give unsolicited advice without knowing what RA actually is. Now I just feel happy for them that they don't know what RA pain feels like as I wouldn't wish this condition upon anyone. I also take more risks and I am more spontaneous because I think what the hell I already got this stupid disease, might as well make the most of the painfree time I have left lol. I've also become more grateful for the small things in life and learnt a lot about medicine and pharmacology along the way, which is a fascinating topic :)

So, you could make a list like that and try to find as many good things as you can, which relate to dealing with RA.

Hugs and hope you'll feel more cheerful soon xxxx Christine xx

Rockpool60 profile image
Rockpool60

What a lovely read thank you ladies..and love Tilda's waffles..lol. I have things to look forward to as I finish my degree in June and hopefully get my BSc with OU and I will be very proud as the last year has been a struggle. I have decided to plan our first holiday in 3 years and have a trip to Italy this October so another positive. I am very lucky to have a wonderful OH and my girls so think it will cheer us all up as always worry what affect my illness has on them. Thank you for letting me know your views and how you cope. Big hugs xxxxx :D

NRAS has CARDS PRINTED XX

Neonkitty profile image
Neonkitty

Hi Rockpool, many congratulations on your BSc. I went back to study fine art and printmaking and got a BA and MA due to the fact I gave up my Job when my RA came on me, so great things happen unexpectedly.

You can often see the different types who ask genuinely even if somewhat crassly, and those who are just downright rude. The latter I wouldn't even waste a piece of card on to write a "go forth and multiply sign"!! You can't help sometimes having a sense of humour bypass when you feel so bad. I had one idiotic man (an in-law) ask me sexual questions very loudly whilst out in a restaurant on a family dinner. These people don't deserve any acknowledgement.

Most people when they realise genuinely that RA is so troublesome are gobsmacked. Want to help more than hinder. My two best friends know exactly how to treat me .. Normally! I go out to meet them and have a laugh and not want to talk about how crappy I feel but one of them is my phone a friend when I feel bad. Also I reciprocate that for her. I hope I can always be supportive to friends.

I have to say I am a very private person about my RA and this is quite unusual for me to do anything like I have done on this site .... Admit stuff! Be vulnerable. I am usually such a toughie. I found here that sharing experiences helps others and even if you show some frailties.

Sure we snap and grump at people when we are in pain. (My husband cheerfully asking if I want a cup of tea and me shrieking at him springs to mind)

I have/have had a lot of disabled people telling me their problems as I used to work for a Voluntary organisation. How can I say this ... Many shocked me as they sort of 'competed' for "most crocked". What I found most disappointing is these people never asked how I was but expected me to enquire after them. That was more disappointing than being asked silly questions. I often say ... Oh I don't want to bore you with details ... If it is someone I don't want to know anything about me.

I am very sure ... In fact I know you will be very uplifted and smiling ear to ear when you graduate! Sounds like that wonderful holiday is something to think about and drift off to ..... Visualise .... When even well meaning plonkers ask silly things!!! ;-).

Julie xx

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