I was just mulling over the last few posts on here, and it suddenly washed over me how wonderful the NRAS team are! 🥰We all have such lovely things to say about them. So much so, that we all sign-post any newcomers to either call them or get in touch on here.
I was wondering: what did everyone make that first phone call to them about? 🤔
For me, it seems daft now, but it was about whether I could have my hair coloured, as normal, due to my meds/injection I had to take with my new diagnosis of sero-positive RA. I think about that question now, and it seems a bit superfluous...but at the time it was super important. They listened to me with no judgement, such respect and understanding, and put my mind at rest as to what to do.
I raise my hat to a magnificent bunch of people. Thank you from the bottom of my achey body and my big heart. 💕
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Moomin8
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The first and only time I have called the help line I sobbed and sobbed because I thought my life was over. I can't remember the lady I spoke to but we were on the phone for ages and there was no sign that she had to hurry me up. I am sure she would have listened all day long. She was very kind, let me get it out of my system and generally pacified me. Twenty years on, my life is far from over and I am very grateful for the help I received that day and for the knowledge that NRAS is there if ever and whenever I need them. A great big thank you from me. xx
Bless you. ♥️ I think they must hear a lot of crying; I did the same. We try and hold it together, at the beginning, but every time we talk about it, it all comes tumbling out; it's a release of our feelings of pain, dread, anxieties, fear of the unknown and why me? But like you say - life goes on, and things quieten down; we do generally live a new normal life. Everyone's lives has bumps and curveballs thrown - ours are just a bit more lumpy and painful at times.
I can’t remember who i first phoned but I do remember speaking to a lady( after my number had been passed on) that had been through the same journey. It was such a relief and gave me so much hope. I was very down and like you thought my life was over. Talking is a good medicine !
I too made contact with NRAS many many years ago. At that time I lived in France and was suddenly struck down with " Arthur" and my friend searched online and found NRAS and then it was "over to me". NRAS helped to reassure and help me sending me paperwork in English. I then joined the chat line and had so much help from other sufferers. On a visit to the UK I met a group of lovely group of people at an annual Conference ......I am now back living in the UK and just before Christmas not getting the help from the National Health I am back and with advice from NRAS HQ I have been following advice they gave me. What a fabulous site this is and we are so lucky with them fighting our case in Parliament and Government. I salute the NRAS with my heart.
I've only phoned once before I received my diagnosis, and was in a bit of a guddle. The woman I spoke with was kind and informed and reassured me that I wasn't just exaggerating symptoms, that RA if that what it was, was a systemic disease. I felt so much more reassured after the call.
They really have my admiration. The way they handled COVID was magnificent. They always strive to find new ways of helping us. What a brilliant group of people.💖
Although I’ve never found myself in the position of needing help I know how tirelessly they work on our behalf & have signposted many to the helpline, most often newly diagnosed RD'ers. Thank you for acknowledging them Moomin.
My first call was when I was going on to retuximab and a six hour infusion including things to help offset any possible side effects. They put me in touch with someone who had done it and what to expect.
I emailed them last year and they called me back for a chat.
I started sea swimming (I live on the North Norfolk coast)and sometimes when the sea is too lively the swimmers head inland to a river. I wondered about the safety of river swimming as I was concerned it might be more risky germ-wise than sea swimming what with chemical run-off, cow wee & poo and the sewage released into rivers etc.
The ladies at NRAS didn’t know the answer but spent some time researching and discussing it between them!
Fantastic service from them for which I’m very grateful!
Wow - that's dedication! Well done you for swimming 😇
I cannot tell you what your kind comments mean to us all at NRAS, especially our fantastic Helpline team, Sarah, Amy, Debbie and Rosie. I am so proud of all my colleagues at NRAS, they all work so incredibly hard and are so dedicated to the 'cause'. There are times when the pressures of staffing, resources, funding and the economy can get us all down but comments like yours have truly lifted our spirits and make a massive difference. thank you so much
I'd just like to echo Clare's comments, everyone in NRAS goes the extra mile and our Information and Support Team are simply the best! Thank you for acknowledging our work it means so much to know we are helping you.
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