Hello well I got back from Barcelona but was tired yesterday so finally I get around to it!! Sorry Summer this is gonna be a long one!
Well I am so pleased to have had this wonderful if tiring experience lol! I got up at 6 am ....definitely a first for me in the last two years to get to the airport. Flying was easy, straight on straight off. At the other side waiting was a really posh car! I felt like a film star as the man in a suit was waiting for me with the board with my name on, and from a disability point of view he carried my case!!
So off to the modern hotel in the business area of Barcelona near the Uni and the hospital and the staff there were so helpful, again carried my bag etc! The other girl Debbie, I hope she doesn't mind me saying was an absolute hoot, laughed the whole time, she seems sorted mainly on her meds and has eight years experience of RA and runs. Self management group, just the type of person you want to meet whilst you r waiting on your drugs to work, that WILL be me!! So whilst I waited on meeting the staff I thought I could either go and rest and pace myself ....or be me and ask the reception where the open top bus was! So I got a Red route bus again thinking that then I don't need to walk too far, and saw the Olympic village, old port, old gothic area and lots of architecture from the bus!
It was not sunny it was pouring down, but the buses have automatic roofs that open in the sun and close in the rain, not that we saw much sun!
So we met the team David, Mike and Sarah, I was dreading them being monosyllabic doctors or business guys but they were young, dynamic and most importantly really really interested in patient opinions and experiences. We had a lovely masterchef type meal in a lovely restaurant in Barcelona.
During the meal we managed though to get a lot of points over as we were discussing them wanting patient ideas and points of view but I really stressed the importance of them not just " paying lip service" to us, but to really honestly keep the patients at the heart of the treatment with no pretence for mission statements ! But I feel these people really wanted to understand what it is really like to have RA.
Next morning back up to meet the team for 8.10 am, early for me but Mike had already been for a jog, OOOH I wish I could still do that!
We were taken to a hotel to start at 8.30am. We had been given a list of questions that we could expect such as when I'd u get your RA, what do you feel about your treatment, how did your family react and cope, a bit of your background, how do you feel your rheumatology and nurses treat you, how did you find healthcare at home. I found myself going into sex and relationships like the new Nras book! Got a laugh though when I said I couldn't swing off the chandeliers any more!
But I saw all the guys faces, there were two groups of about twenty I think at the workshops and they were genuinely interested and realised that we need to be treated as individuals and have more empathy and more holistic care. We also talked about more research ( there were scientists there) I said I though that finding out if our children were high risk for RA was good but that I didn't think my children would want to take strong drugs with horrid side effects as prevention, but that was only obviously my pint of view. They also asked what I would like to see research on, my answer was to pinpoint with some sort of test which drug would be the bet help to you, thus stopping his long period of try this one then that one which causes so many of us pain and loss of work whilst waiting.where others hit on he drug that works or them quickly.
Then lunch and back on the plane and drive back. So long, brilliant and inspiring. I do feel the future is bright with these young amazing people on our side. They did know a lot about NRAS as well and I for one are glad NRAS are continually fighting on our side with all their links!
So I am emotional as on a personal note I felt for the first in ages, valued and of use and for that feeling, I am very grateful.
Hope I spoke for all of you xxxxxxxx
Written by
allanah
To view profiles and participate in discussions please or .
Hi Allanah, sounds amazing and so positive. The point you made about finding a drug that would work first time rather than trial and error was spot on and would improve our lives so much. Thank you for representing us all and hope you are putting your feet up today. Tracy xxx
lol, thanks Tracy, thats why i took a day before writing the blog. But I came home to a broken fridge and dishwasher and 3rd thing toaster!! I thought they would go so got them ordered they came today and i spent today putting the kitchen straight again phew!!
I think I may have missed some blogs of yours, am unsure what this was all about, although it sounds impressive. I have been on the open top buses round Barcelona and agree their are some pretty amazing sites. I have tended to use these buses more since the onset of PsA and book my tickets before I leave this country for each stop on the Cruise. It's cheaper than if I book with the cruise line.
I am glad you had a good time and that you told them what it was like for us with ra. To be treated like a rock star must have been enjoyable for a change.
it was Sylvie and i am very grateful for that and also the feeling of being useful. Since I got sick and retired I felt pretty useless a lot of the time and all the skills I had at running conferences and speaking was now wasted. So it felt lovely to do what I used to do with a lot of help from the team.
Yes it was a conference and Debs and I were given topics to speak on such as how long have you had RA and what is its impact on your life.
As well as above i forgot to say we even spoke about my fears about DLA changing to PIP, as if I am deemed to ill to work by Rheumatologist, Occy health etc, but ATOS say I can't work and my benefit goes, they won't employ me back int the NHS but I won't get any money, so what will I live on. I don't think they were aware of those types of anxieties and stresses.
I did try to get in as much of the comments that you all left on my last blog, benefits, drugs, treating us as individuals etc. So i do feel that Debs and I gave the delegates a good insight into real RA. We also had a discussion whilst i am at it about the name RA. I said i hated the "arthritis " bit, but they said as they often use RA as the initials for the disease so we would need to keep Rheumatoid A......?.?..what. ?
All i could think of was Rheumatoid A .....utoimmune, but I completely prefer something like Rheumatoid Disease RD!! Any ideas just between ourselves?
lol I knew you would pick out the chandelier bit. ha ha. I dont know what the perimeters for being chosen were so was just pleased i qualified to go. Hope you feeling better today.
This sounds like a fantastic trip. Well done for putting your point across on behalf of all of us. You sound like a brilliant advocate of RA suffererers. You obviously have a future in public speaking on behalf of the NRAS!! lol. New career for you?? Well done as well for commenting on the new NRAS book on sex and relationships. I know it's a difficult subject to talk about. I tried to start a blog about it earlier this week and got one comment!!! Perhaps others not only don't swing from the chandeliers but don't even make it to the bedroom.Lol. Only kidding folks!! Was the email that went round only for volunteers? I have been meaning to ask how to get more involved as there isn't a local group round here.
Just email clare@nras.org or gill@nras.org or phone the helpline. They also just had a few conferences for volunteers or would be volunteers around the country. You can volunteer on here , you can fundraise or why don't you with nras help start up your own group? There's loads of possibilities, give them a ring and go for it, trhe more we all help the better we will be.
Wish I had sEen your blog, I would have joined in!!!
Hi Allanah what an RA star you are! Its great that you went there as a kind of ambassador for sufferers well done!
I think RD is good. My doctors don't say RA - they seem to just call it rheumatoid - so I do too now. The arthritis often seems the least of my problems if I'm honest so its good that this subject comes up for discussion frequently.
But just one thing about volunteers. I've become an NRAS volunteer too now and asked if this meant I would get a red box by my name - which I don't feel that ready for to be honest having only had RA for two years and 18 months since diagnosis? The answer was that that no I wouldn't because being and HU volunteer is not the same as being an NRAS volunteer. I was a bit relieved because I only joined as a volunteer to become a Scottish Ambassador up here rather than any kind of advisor on HU. Are you both an NRAS and a HU volunteer do you know? I found this a bit confusing even after the explanation! X
Oh if you want to volunteer for the HU site here which is moderated by Nras there is a volunteer box at the top of the homepage.you fill in the application which is moderated by the Nras team and if accepted you get a banner which is supposed to mean your comments may be more trustworthy or experienced sort of idea, so with all your experience I think u would be great at Scottish ambassador, health unlocked volunteer, Nras volunteer, mum, chief cook and bottle washer!!!
If you want to volunteer as an official Nras volunteer you apply to Nras on the emails above or the helpline, well at least that's how I did it. I had to send in forms with references which they check and if u r suitable you will be a volunteer!
And pleez I am not looking for any praise you know, I just felt it is important to let others know what Nras and other health care professionals such as at Barcelona are doing to help us RA sufferers. Xx
Oh sorry for praising you Allanah - it just popped up unbidden but you re still first and foremost mother and rock chick supreme don't worry. I am an NRAS volunteer - which I see as being more about campaigning for RA than advising on here. I'm too much of an RA youngster still for this status I feel. Its just that people night not know that there's a difference and I think it needs clarifying. You can be a member on HealthUnlocked and not actually a paid up member of NRAS I believe - which seems strange to me but there we go! Xx
Ps I don't mind being washer upper and parent but I can't cook for toffee - husband is chief cook around here - if it was down to me it would be sardines on toast or beans on toast plus the odd pizza! Xxx
Oh ok praise away then!!! Liking the rock chick, 45 days till lasto, so 6 more Humira, two more steroid jabs to help me yeah.
Can I borrow ur hubby neither of us cook well, just basic food!!
I just got RA two years ago but I think I fitted in more drugs, physio, OT, counselling, job losing into two years than I expected ha ha xxxxx
Ah well you've crammed par excellence for all the volunteering you do for sure Allanah and a more deserving candidate for a bus trip round Barcalona (even in the rain) I could not think of! I was so fed up when the three R's conference was postponed as was looking forward to my first RA event but it will still take place later in the year and I got my MSP to help me get flights (paid for by Arthritis Care) postponed as they were non refundable - while simultaneously getting him to promise to"rally the troops" so enough politicians attend next time "so I don't have to sort out a second postponement for you!" He said. So my RA networking days have begun - rock on Allanah! Xx
Brilliant!! As a Scottish born person I am glad there are Scottish ambassadors! Great the msp's are helpful. I have never been into the Scottish parliament as you have to book in advance and I rarely know well enough in advance that I will be in Edinburgh, but it's definitely on the to do list!! I hope the next one is set up soon so the politians can ensure at least in Scotland that the chaos of pip etc may not happen there , here's hoping xxxxxx
Also for all of you that want to be an HU volunteer I did it due to being in the house unchanged a lot with my mobility issues, it helped me such a lot especially when I was first diagnosed to come on here to chat and I felt less isolated and got a lot of support and advice from people who know what it's like to get RA. i felt it also kept my brain active t a time hen my body isnt! so if anyone is thinking about it, join in!
"Congratulations !" sounds like you did a fabulous job.......and the bus ride sounded fun!!..
I follow an American site called RA warrior.....came across it when trying to gleen as much info as i could devour on this ruddy awful (RA) disease.......They refer to "IT" as RHEUMATOID DISEASE....which makes sense as joint probs are only half the issue as Im rapidly learning ......
On a lighter note sorry Allanah but your now firmly stuck in my mind as the "Chandelier Lady!"" now ........lol
Just read your blog. Sounds like a great trip and am sure your input will have a beneficial effect for us all. It's so important that medical professionals can get a real idea of what the full impact of the disease and the drugs is having on the patients. Hope you can enjoy a restful week now to recover. (although like me, you'll probably find the stress of this coming GCSE week will be even more challenging!)
Well ta! Katy still sleeping after going to pictures last night, " I am prepared mum!" But I am having kittens worrying about 2 exams tomorrow, 2 on Wednesday and one Friday, and I'm not even taking them!, although with amount of testing her she asked me to do, ...... Amylase, made in salivary glands etc etc ......... Lol
You must be exausted after all that. Thank you for speaking for all the rest of us and for uplifting us with the news that all these young and brilliant scientist are working hard to not only help and improve our lives but more importantly for the sufferers of the future, young and not so young. Take a good long rest to yourself and once again that you. X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Urgent help required! Is your DAS score <5.1 and your RA not well controlled?
Gut bacteria over growth ! Eeeeeee
URGENT - Just days left to help a good cause...
Questions about Methotrexate.
Who are NRAS and HealthUnlocked?
