Your comments, thoughts and opinions please

Your comments, thoughts and opinions please

Ailsa and I are going to a meeting on Tuesday which is being held at the Arthritis Research UK (ARUK) offices in London to present HealthUnlocked to a group of professionals. Strangely enough, the ARUK offices are somewhere I have never been in the four years I have been at NRAS, and I am quite looking forward to seeing what they are like and meeting people from the charity.

The purpose of the meeting is to show the real benefit HealthUnlocked has on those living with a long term condition; the ability to share experiences with others and ask questions about medications, procedures or other things that only those with RA would know the answer to!

It would be fantastic if Ailsa and I could show them firsthand the value of the HealthUnlocked website using comments from the real ‘users’ of the site - your comments.

If you would be kind enough, and feel comfortable to share your thoughts, comments and opinions about the site, and tell us how it has personally helped you please reply to this blog with a few sentences, or alternatively you can privately message me. All comments will be kept completely anonymous.

Thank you so much.

Emma

NRAS

20 Replies

oldestnewest
  • Having suffered with RA for 17 yrs I have always felt the disease to be a lonely one. Then through the NRAS I joined HU, it was then I realised that I was not alone and I no longer felt isolated. Others on HU have given me so much support and hopefully with my years of personal experience of RA I too have helped other people.

    Mandy

  • I have had RA for nearly five years. I have always felt very lonely, and although I have a caring support network I felt that they really didn't understand what I was going through. A couple of months ago things came to a head and I actually felt that I couldn't carry on any more, I was ready to walk away from my family as I felt it would be better for them in the long run. My husband took control in many ways and after a visit to the doctor logged onto HU and wrote about life living with someone with RA; he was overwhelmed by the positive response and as such convinced me to take over and start asking questions. I have received some fantastic and comforting replies which in effect gave me the confidence to stand up to my consultant and start phoning my RA nurse (which I had never done before) In the past couple of months my medications have been changed and I feel that my life is changing too. This, I feel, is down to not feeling so lonely anymore, so in my opinion this is a fantastic tool for sufferers to be able to share and express their views.

  • It has been tremendous I received support, advice and "met" some great people, a couple in person!. I went to a pharmacy cpd meeting and have flagged up the health unlocked site as a valuable tool for every one .. including medical people the buzz word I used is sign posting.. people didnt know about health unlocked. it is a very valuable support/ information group. it can obviously be used for RA,, but covers other illness/ conditions too..

    so I have helped raise the profile in the pharmacy profession... nras to get special mention at rheumatoid arthritis focal point/ training workshop in november. my prayers have been answered.... health and job permitting)Alison

  • I have never had the chance before to link up with a group of such inspirational & amazing people. I have had RA for 23 years & for the first time this year ( it took me that long to pluck up the courage to join - had visited the site as a guest before!), NRAS & Health Unlocked have shown me I do not have to 'suffer in silence'; I am as valuable as the next person even though I have a disbaling disease & most importantly of all I am not alone in the daily fight. It is a fantastic source of information & support, empowering each of us to continue to 'fight' for the treatment & care we each deserve.

    Andie

  • If only this site had been around in 2007 when I was first diagnosed I wouldnt have felt so alone and helpless. Anyway thank goodness it exists today. It offers such great support whenever you need it. People who dont have RA can never fully understand what it is like to live with. Through health unlocked we can write blogs and let out our feelings out to one another, comfort and support each other. We can laugh and we can cry out if we want to. In short its great. Long may it continue. Sharon

  • it is great for practical and emotional support

  • I'm new to RA, new to NRAS, and very new to Health Unlocked. Living as I do, far away from services with no team I can refer to yet (and when I get one it will be overseas because I live in Orkney) - the NRAS helpline and support from bloggers has so far been the only contact I've had with anyone with or about RA, beyond my GP. I'm still trying to come to terms with having this chronic disease, so not fully engaged with Health Unlocked yet - but can already see clearly that if I need them I will benefit enormously from a very experienced and supportive bunch of people - and perhaps one day even be able to give something back. But I would just like to say that from reading the blogs, questions and responses to date I have felt a little less isolated and a little more sane over the past few horrible months than I would have done otherwise - and it's wonderful to know that this resource and these people will be here for me too, when and if I need them in future. Hope this helps. Tilda

  • This website is a god send. I was diagnosed with RA five years ago, and really couldn't accept it, didn't want to talk about, but as it progressed I didn't really have any choice. Only two weeks ago I joined Nras and then this web site. I have only written one blog and that was to thank everybody on here for all their blogs,I have read so many of the blogs, they have given me so much help and information, I also feel I have made lots of new friends on here who will always be there for me. Thank you.

    Karen

  • Hi Peeps.

    This is my fourpenny worth... it's almost as if words are not enough to say how much I have benefitted from both this site and the NRAS forum. On my diagnosis last year, I was left in a very long dark tunnel. When I left the consultant all I knew was I had a name for all the problems I had been having for quite some time. It was only logging on to NRAS which made me realiase just how little I knew and what to expect. Through "talking" with others I have enabled and empowered myself to take control of my disease. Being able to understand it, deal with it, to ask for help, not only for myself but for my family too. It has been the most demand period of adjustment of my life and I do not know how any others have been able to live with it for years without such a resource. Before I got to take my first lot of medication between October and December I became so low and depressed I too had suicidal ideation. Believe me that is not something you can control, but you honestly think that you would be better off "out of it".

    So long may it continue... Thanks

    Julie x

  • P.S. The people who run it aren't too bad either! No seriously, they too are so understanding and empathic. - it's great. Lovely bunch of people. x

  • I have a blog of my own, so I don't blog on this one, but I still really enjoy reading it and throwing in the odd comment. A ‘community blog’ where anyone who’s a member of NRAS Health Unlocked can just throw up a post – no mess, no fuss, no need for a wordpress or blogger account, and no need to worry about regular posting, statistics etc. is a terrific idea. I think it's great for providing support for everyone - the people who post and the people who read their posts. Keep it up and spread the word!

  • Hi Emma,

    Good luck on Tuesday. From my own perspective this site has helped me tremdously, and my only regret is that I had'nt got access to a similar site, when I was newly diagnosis. In actual fact until I was laid up in the early days I had'nt had time to use my lap top at home except for googling and booking flights etc. When I was at home I set up a facebook account and in some way was led to Health unlocked. I have met some great friends on here and have been able to share my mostly positive approach to RA. I live in Rep of Ireland and our Arthritis assoc is not nearly as informative or good, in fact I am sure if I rang a help line, most of the time while the staff are great and sypathetic most non medical people are afraid to give advice & will refer you to your doc with a question as simple as good shoes!, whereas on this site we are all just a group of people with one illness in common and like most, love to chat and talk. Here, we can expect not to be judged and not to bore anyone with our complaints, valuable advise is given which does'nt take the place of a consultant or GP but is available at the click of a keyboard. You can take away what you want from most blogs or questions.

    I thank you all from the bottom of my heart for this arena, I personally feel less isolated in this mostly invisible, but widespread condition. I am only sorry you are not in Rep of Ireland, makes no difference anyway, the people are the same the world over, even if the treatment is not:(.

    Love & best wishes for Tuesday, hope you packing those power dresses & shoes!.

    xxx Gina.

  • Absolutely priceless & invaluable is how I would describe what you've done here! I can share every single painful & emotional experience I've with my RA, with no one questioning the way that I feel, or how much pain I'm 'supposed' to be in. I would be lost without this xx

  • Sometimes it feels that people who don't have RA (and associated illnesses) don't understand what RA sufferers are going through. Our friends and family do their best but they don't actually know what we are feeling (try as they might). Whereas the friends we meet on here know exactly how the pain, depression, feeling of 'why me?' affects us on a daily basis.

    And then there is the supportive advice - we all know our GP's and rheumy teams are there but sometimes we feel that we are being a nuisance. Help and advice from friends here is readily available. It doesn't matter if it's in the middle of the night (the pain we are in is keeping us awake) this site gives us somewhere to go to have a moan to people who understand.

    Somehow it feels so very personal.

  • It's thirteen years since I was diagnosed & I believe I would have had a far easier, less bumpy & less lonely journey, had HU been around.

    I can get advice & hopefully give some. I don't feel so alone, nobody really knows how you feel living with RA unless they actually have it.

    I check in a few times a week. I even look forward to a certain members' blog!

    I have logged onto other RA pages & blogs, but they do not compare with HU. It is a very refreshing & helpful site. One I have come to rely on.

  • Brave people,

    Although I don't blog much, I read other peoples blogs and reply if I think I can contribute or give advice. A site like HU is a valuable source of information because it comes from people who have first hand experience. The site is well designed and easy to use. We would be a lot worse off if this site fell victim to cost cutting.

  • Thank you all so much for your kind comments; we are so happy that the site has been a great place for all of you to speak to others and get information and first hand experience about RA.

    I am sure that your comments will show everyone at our meeting tomorrow just how invaluable a website like this can be, and how important speaking to others in the same boat is.

    Thank you once again.

    Emma

  • Thanks Emma,

    I've just found Health Unlocked this week and already find it invaluable. I've been able to link up, not only with people in the same boat, but, with people in the same county - which really helps the lonely feeling that accompanies this disease much of the time.

    With personal experience of extended waiting times and potential changes to services, accompanied by a continued lack of understanding in the world of work, a site like this becomes ever more important.

    Thank you to all who continue NRAS's great work and make these support systems available ~ Lizz

  • good luck tuesday emma..

    ,hope to see you at nras lunch june 30 th?

    Alison

  • I read the blog late at night when my joints are screaming at me. I can not get to sleep. It gives me comfort to read about others who are also having a difficult time with RA. Thank you, so much!!

You may also like...