The other side of living with RA

Hi, I really need some help on something I've been toying with.

I really want to help people with RA live a life they love well. The reason I want that for others is because I know how RA can totally knock you off your feet, tip your world upside down, empty your pockets, bash you about and then leave you on the floor. While the doctors try different meds to cover up the physical pain, there's something intrinsic that shifts. It affects your relationships, work, mind, self-care, money, recreation - the list is endless; but mostly it affects who are you inside and that's what the doctors don't cover. Navigating that on your own is scary, often lonely and overwhelming. I know, I'm going through it.

So what I'm really looking for are people I can talk to (on the phone) about if support like this is wanted, needed and necessary. And if they'd be willing for someone like me, to help guide them in addressing and changing these things in their life?

I know it's a big idea and a big ask, but any chats you can have with me are greatly and warmly appreciated.

Sab.x

12 Replies

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  • Thanks Kai, the NRAS community is so helpful. I'm just trying to find out if anyone would want personal support in dealing with RA?

  • Hi Beautifulmovement,

    I do not mind to share my own experience if I can help out. If it is not okay to share it here, you may message me in private. I was diagnosed with RA in Jun 2014 and I am in remission since Aug 2016. I was/am back to my normal life about a year ago though the rheumy just declared me in remission recently.

    You can check below link to understand more about me before you decide if I can give you any positive advice that you needed?

    healthunlocked.com/ra-warri...

    healthunlocked.com/ra-warri...

  • Hiya Sabrina, how've you been? It's a while since you've been around. I think it's an excellent idea & may be something you could chew over with the staff at NRAS, to become a volunteer on the helpline that is, I know they have them, I think they even match to a specific problem a sufferer is struggling with.... email volunteers@nras.org.uk. Unless you'd prefer to go it alone though I'm not sure how you'd set it up independently as a one to one I'm afraid but it's a really good idea & I'm sure many would find it helpful.

    Hope you've been getting on ok. x

  • Hey nomoreheels, so lovely to hear from you! How are you?

    I'm well thanks, ups and downs, but enjoying life.

    Thanks so much for your suggestion. I will send them an email.x

  • That is exactly what this forum is able to do, eventually i pray that there are Arthritis clinics that are able to give an all encompassing holistic approach to all aspects of RA.

  • Yes to everything you wrote.

    I get it, I'm going through the upheaval at the moment. and it's rough. Perhaps the biggest thing for me that seems trivial to others, is that I am extremely fragile. Any negativity at all is like a kill switch to my body and soul. Then there has to be a period of recovery. The risk of an episode like this generates fear and stress. So it limits options, to very good days where preparations can be made and strength is high. Which is not most of the time.

    Does everyone feel like me?

    I suspect that they do to some degree, I have been turned down for PIP and ESA, sent back to the job centre, can't get housing benefit, all because I can't handle the stress of complaining about these unfair decisions.

    I also have a character flaw that allows me to help others before myself.

    So yes I am willing to help.

    Dave

  • Hey Dave

    I think a lot of people do. RA has a habit of beating you up and robbing you all at the same time. Have you spoken to your GP about your stress and anxiety?

    I want to help people with RA on a more individual ongoing basis. I don't have qualifications yet, but I just want to know if people would find it useful.

    I feel like there's a massive need for emotional support when diagnosed with RA that isn't provided by the NHS and I want to help with that.

    Sab

  • Not quite sure where you're coming from with this Sab, are you looking to provide counselling for people struggling with RA? Are you qualified and accredited? NRAS, as others have said, do a great job for no fee via the Helpline and the buddy system. Perhaps I've misunderstood you though and you're keen to help others via NRAS. Good luck anyway.

  • Hi

    Yes I would like to help people on a more individual ongoing basis. I don't have qualifications yet, but I just want to know if it's a service people would actually use. Thanks

    Sab

  • I get where you're coming from .

    They say RA doesn't define you it's just part of you .....but in reality on a bad day it totally consumed me .i was RA that's how it felt :-(

    I'm not the same person I was 2 years ago and that can be depressing I've had to change my diet and lifestyle even my job was on the line .Ive had to adapt .

    But with a negative comes a positive ....I appreciate the little things in life and I believe I've grown spiritually .....not in the tambourine bashing way :-) not that there is anything wrong in bashing tambourines ...don't want to offend anyone :-)

    On a plus side I think my meds are kicking in and I'm returning to work on a rehab program after 6 months off being in pain and not knowing what the future held .

    I'm happy to talk to anyone about my experience .

  • Thanks, I'm with you on all those things. I was diagnosed 2 years ago and had to adjust my life around my RA. I've got a pretty good lifestyle, RA is controlled by meds, and I get to do a lot of the things I enjoy now. I'm really pleased to hear your meds are kicking in and you're returning to work on a rehab program. Let me know how you get on with it.

    Like I said to Fife, I would like to help people on a more individual ongoing basis. I don't have qualifications yet, but I just want to know if it's a service people would use.

    I feel like there's a massive need for emotional support when diagnosed with RA that isn't provided by the NHS and I want to help with that.

    What do you think/

    Sab

  • Yes definitely !

    It's not a case of take a pill and everything will be fine .its an emotional journey that nobody wants to be on but have no choice .

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