Tags: aches, arthritis, Barcelona, crafting, felting, Hunstanton, nuno felting, paper fabric lamination, RA, rhematoid arthritis, rheumatoid arthritis (RA)
It all started on Good Friday (aka the first day of passover). I had to work all day and when I got home I had a slight cough – but hey, I often have a slight cough. I thought no more of it and went of to dinner with my mum and visiting bro and SIL (aka Mr and Mrs Mooseface). A very nice dinner it was too. We got home and I felt cold … then I felt REALLY COLD! Eventually, when huddled under two duvets, wearing a dressing gown and thick bed socks and with a hot water bottle cuddled up to me, I thought ‘Hmm, I wonder if I’ve got a temperature?’ I did. it was 101.2 degrees – pretty high. The next day was a big Passover celebration with a bunch of cousins and I missed that completely! NOT HAPPY! ‘Heck!’ I thought, ‘we’re supposed to be off to Barcelona in just over a week – I hope I’m OK for that.’ It turned into a very nasty bug with a sore throat, cold, stomach problems and aches, similar to flu.
To ‘cut stories long and short’ as a South African coach driver I once met used to say (a lot, which is why it’s stuck in my head for over 30 years!) I wasn’t – and neither was hubby, who trumped my temperature by going up to 102.2 two days before we were due to fly – by which time I had also contracted sinusitis.
We didn’t go!
(Mind you – if we’d had travel ‘fun’ like Mr and Mrs Mooseface did on their recent holiday, maybe we were better off staying at home!)
I’d been looking forward to this trip for years – literally years – since I was last there, in fact. A bit of a disappointment then (says Penguin with true British understatement). I was also off work for the whole week before our ‘holiday’ which caused some problems, as you can imagine. I was determined though that as a) I still felt pretty rotten and b) I was darned well going to have a holiday, I wasn’t going back in my ‘holiday week’ so I didn’t … which caused more problems. At least the boss couldn’t tell me off ’cause I’m self-employed.
Toward the middle of what should have been our Barcelona trip, hubby started to feel better, and my antibiotics for the sinuses began to work, so we decided on a couple of days’ holiday on the north Norfolk coast – ’cause neither of us felt up to driving very far. I found a hotel on TripAdvisor in Old Hunstanton which was really lovely and the weather couldn’t have been better – in fact weather-wise we could have been in Barcelona! The hotel was very quiet, had excellent food and a bar open all day, and was less than ten minutes walk from a rather lovely beach – just right for a pair of old convalescents! It did us both the world of good!
Unfortunately it ended all too soon (although Enormous Cat says it went on far too long*) and we had to come back home. I did manage to get some crafting done at the weekend though, before I went back to work – I nuno felted four scarves, so pretty pleased with myself there! (No photos as yet, I’m afraid!)
All this time the RA had been pretty much dormant, quiescent or however you’d like to describe it, which was generous of it given everything else that was going on!
Then back to work – oh boy was that hard after two weeks away – and we are SO busy, and stupid things kept happening, mostly my own fault – or at least the fault of the fact my work-brain was temporarily disconnected! That situation (both the business and the disconnected work-brain) hasn’t really resolved over the last couple of weeks!
I have got very into my nuno felting though and then I discovered ‘paper fabric lamination’ here at Felting and Fibre Studio. A whole new world of nuno felting potential! Unfortunately I also discovered that the RA’s back … it’s probably not even ‘flarette’ stage right now but it’s niggling away and making me tired and somewhat achy, not helped by the fact that the beautiful weather we had briefly has now gone and it’s dark and gloomy out there again!
I have just about (with many small breaks for coffee and a sit down!) managed to make a couple of small samples with paper fabric lamination and nuno felting (see above) – and I reckon that this could easily be incorporated into scarves and other clothing and would wear just fine – even the metallic bits – see the bee in ‘bee and flower’- so that’s quite exiting. (Well it is for me – but I’m a bit odd like that!)
Felting, however, is NOT kind to RA joints! I’ve been working on ways of minimising the problems, like using a sander (noisy!) and a tumble drier (not enough control) so I’m back to just doing it in small spurts and in small pieces! These two together are only a about 10 inches across and 6 down! When I feel better I’ll try it in some silk chiffon and then maybe make a scarf or two incorporating some fabric paper laminated features.
Tags: Art Deco, Art Nouveau, Barcelona, Hotel 1898, opera, R.A., Rheumatoid arthritis, Samantha, Spain, Spanish, Terry, Wyeth pharmaceuticals
I sent a postcard to hubby on my first day in Barcelona. It said, ‘Start learning Spanish – we’re coming back!’ It’s a truly beautiful city – especially if you love Art Deco and Art Nouveau as I do; the people are friendly, the food is amazing and the hotel they put us up in … well, that’s one bit I probably won’t go back to. No, don’t get me wrong – it was estupendo, fantastico, fenominal (I’m sure translation is not necessary!) … but so was the price. Not an issue for me since I wasn’t paying, but I think if I go back to visit with hubby we’ll maybe just about afford a drink on the roof terrace there for old time’s sake. (Might have to share the drink!) If you have money to burn then Hotel 1898 is probably THE place to stay in Barcelona.
So, was it useful from an R.A. point of view … well, I met some great people, from UK, Spain, Malta, Greece, Israel, Argentina, Romania and Sweden, all R.A. ‘victims’ and all chosen because their attitude was precisely the opposite of ‘victim’ or ‘sufferer’ – these were all people who were getting on with their lives in really positive ways, often doing a lot to help others on the way, and the event was to celebrate their achievements. Made me feel a bit of a fraud, meeting some of them – quite humbling. Terry, for instance, was diagnosed at 16 (ouch) and has put up with SEVERE R.A. for 20 years now – and she raises significant amounts of money for NRAS and still has time to hone her wicked sense of humour on unsuspecting companions (i.e. me). I shall get my own back photographically later on. Theresa from Sweden was diagnosed at eight and … wait for it, wait for it … went on to become a professional dancer!
‘But what did you have to DO?’ I hear you cry – ‘Surely you had to sing for your supper – there’s no such thing as a free lunch, let alone a free three night stay in a fabulous hotel, full board, heavenly food, comfy beds, friendly staff …’ Well … I think we spent a total of about 1.5 hours in groups and interviews on Monday and Tuesday and the rest was free time! There was what they called a focus group to start off with, divided into three groups as there were 28 ‘patients’ altogether, some with carers in tow, so too large for one group. It wasn’t really a focus group – more of an ice breaker. Everyone told their stories briefly and then we all went off for a lovely lunch. In the afternoon there was a short chat about how to deal with the press, how to control a press interview; how to think in soundbites really. (Not the way she put it, and she might be insulted to hear me describe it like that, but that’s how it came across to me!) Then on Tuesday morning at 9.30 I did my short piece to camera and then had the rest of the day free until the celebratory dinner.
Apart from the absolutely abysmal travel arrangements, my only quibble would be the arrangement of this. It started at 5.30 with drinks and canapes (standing up) for half an hour, followed by paparazzi hell (a.k.a. a photo opportunity for the press with Jane Seymour, who presented the certificates) with all of us in a group photo. Then a video telling the story of Samantha, one of the participants, and one of the many amazing people there. One young lady (carer for one of the Greek ladies) got clobbered on the head with an enormous telephoto lens, but other than that it went O.K. Then we wandered into the dinner room and sat down to a video telling the story of one of the participants, Samantha, just one of the extraordinary people there, a speech from Jane Seymour, a speech from a Spanish consultant (a whole story in itself, but I’m not going to go into that now!) and a speech from a patient group representative who bravely did her talk in English (which she didn’t really speak.) It was a very good try, but really, as we had simultaneous translation, it would have been better to do it more naturally in Spanish, rather than reading the PowerPoint presentation word for word in English! Thumbs up to her for trying though – a brave effort.
THEN we had to all go and get our certificates individually from Jane, who also gave us a signed copy of her new book. Seems like a nice lass – I’m jealous though as she’s about fifteen years older than me and still looks like a ‘lass’!
Then the OTHER guest of honor, Javier Bovea Ahis, an R.A. ‘sufferer’ as well, who had had to give up his career in the police force due to his R.A. and retrained as, of all things, an opera singer, going on to win various Spanish talent shows and make quite a name for himself, sang. And boy did he sing – he had a terrific voice, but the room just wasn’t big enough for him. He also had an eye for the beautiful ladies, whom he serenaded repeatedly later in the evening, and even danced with in one instance. I was grateful not to be one of them as I think their ears were still ringing the following morning.
Then ANOTHER group photo and then … FINALLY they FED us. This was a bit of a cultural issue; it must have been about 8.15 by this point – the Brits were STARVING, the Spanish were probably just about considering the possibility of getting a bit peckish!
My quibble isn’t with the late food – more with the fact that the event started at 5.30 and we finally finished the meal at 11.00 and that’s a LONG HAUL for anyone with rheumatoid arthritis I reckon! Some stayed up even later than that … you could spot the bleary eyes at breakfast the next morning!
So – was it worth it? For me, si! I had what amounted to a fabulous short break in Barcelona. For Wyeth Pharmaceuticals, who funded it? I really have no idea. The idea is to put together a website to encourage people to take time out to really learn about their condition and learn to accept it and live positively with it. (My Day for R.A.) That’s what we were all there for and that’s what the piece to camera was for … but as yet if you go to the site you’ll still find application forms for the event that I’ve just been to, so when they’ll get it updated, who knows. Hopefully in time for World Arthritis Day on October 12th!
Photos of the event, including the serenading opera singer and Terry with her new best mate Jane, are here!
Tags: Barcelona, Jane Seymour, My Day for R.A., R.A., Rheumatoid arthritis, Spain, Wyeth pharmaceuticals
I’ve been invited to an (almost) all expenses paid trip to Barcelona next week for an event about managing R.A.! I just knew there had to be some perks to having this dratted disease! Always look on the bright side, I say – and this time the bright side is taking me to (hopefully) bright and sunny Spain.
I had an email sent through the National Rheumatoid Arthritis Society in mid-August saying that this event, My Day for R.A. (www.mydayforra.com), was taking place and that if you wanted to be involved you had to fill in a form telling your inspirational/positive story about living with R.A. They apologised for the short notice but they’d only just been told about it, about three days before the deadline of 14 August.
Well, work was fairly quiet so I thought what the heck – nothing ventured etc. and filled it in.
Fast forward three weeks to Penguin on holiday in sunny Sussex – in fact sitting on Brighton beach soaking up the sun and lapping up an ice cream – when the phone goes. It’s my colleague saying, ‘Can you phone this woman urgently – something to do with an R.A. event or something …’ So I did, and it was a nice young lady wondering if I’d got the email inviting me to the event in Spain … which of course I hadn’t.
Short notice seems to be a feature of the whole event – they said they’d let all shortlisted people know by end August, then sent round an email that said there would be a delay due to the large number of responses. They let me know on 10 September and I’m (hopefully) flying out on Sunday 20 September … but I have yet to receive any flight details. I’ve got to get myself to the airport, after which they take over and arrange everything … hopefully! They pay for the travel to the airport too, just ask you to arrange it … which is fine, provided they tell me sharpish which airport I’ll actually be flying from and when!
It should be a really interesting event – people from all over Europe discussing their ways of dealing with R.A., and culminating in a celebratory dinner featuring Jane Seymour (Dr. Quinn, Medicine Woman, bond girl in Live and Let Die, and, by astonishing coincidence, on the cover of the book I’m reading in my ‘gravatar’ photo on my home page, as Lady Blakeny in The Scarlet Pimpernel, amongst many other things). They hope it will also feature lots of journalists for some good publicity for Wyeth Pharmaceuticals who are funding it, and hopefully also to improve people’s understanding of R.A. – both those who’ve got it and those who haven’t and make those annoying comments about ‘Oh, isn’t that wear and tear on the bone’ etc. etc. They’re even providing participants with a workshop on how to deal with the media – so if nothing else, that might well have some useful learnings!
I’m really hoping that there’ll be a little bit of time to see something of Barcelona before they fly me home again on Wednesday – we shall see. Either way, I’m looking forward to it and hoping it makes a contribution to people’s understanding of rheumatoid arthritis!