Those of you who know me know I love my music and bring outdoors. Those of you who don't , well I just told you now!
BRA ( before RA!) I loved going to music festivals, Leeds, t in the Park, Glastonbury, evolution, latitude, V festival and any gigs I could afford. But then RA struck and I thought that was it, I would never again be able to manage , well I did! Thanks to support from my Rheumy bumping me up with steroids as needed lol, my brother and daughter going along to help , and a fabulous charity called " attitude is everything"
They help you by setting up support, disability camping, raised platforms above the crowds, and better access to stages( at glasto you can cut round the back of the main stage on paths to avoid crowds and mud!)
If anyone is interested and feel like I did when I felt so isolated give them a call.
If you want more info let me know but I will be in a field ( in a nice warm tent with my attitude friends , from Wednesday!)
Let you know how it goes !!!
Written by
allanah
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I'm suffering from RA and an as yet u identified inflammatory illness. If I get a flare I'm in agony and I wouldn't imagine taking morphine to a festival would be all that clever. I had to miss download this year for the first time in years due to illness. Tomorrow I'm going to see Steve Harris' British lion at the O2 academy in Islington. So up close as in the early days to the legendary iron maiden bassist.
Also got tickets to new order, deftones, Eagles of death metal and carnifex. I don't let the pain get in the way at gigs but at download there is just too much walking if I have a flare. Do you need to be registered disabled to get assistance at festivals or just apply for disabled tickets?
Coz I'm not registered although can't walk more than 50-100yds during a flare. And my flares are becoming more frequent. I'm being put on azathioprine as methotrexate gave me a severe toxic reaction. Hopefully that will get me back well enough to go. Also I keep a supply of pred at home and could add those to my hydrocortisone to stop pain for a few days.
I feel it too! Luckily my Rheumy is extremly good and if I'm sore he will see me a few days before and sort me out steroids ! However Download is one of the best festivals for disability, they have good awards for their access !
I think it helps of you are on DLA or something as more and more people have to " prove" their problems as others chest and lie! But if you contact Attitude and explain your problems ( maybe a note ftom gp saying you need this support will help) they are excellent .
I do take my morphine and a prescription for it with me in case there's any drug dogs lol!!
I also plan well, I have a great comfy lightweight camp bed that is off the floor so I can get up more easily. I take hot water bottles which ease my joints and they have a tent in the disability field with hot water, charging points for phones and wheelchairs. The staff wil help you put up your tent and put it away again.
On the disability site u can drive on , unload and then just take the car to a parking a few metres away.
All these things help a lot.
You also get access for shorte routes that are pathed and cut through stages.
So it can e done. Check who does the access for your next gig and apply via them ( you often need to buy the tickets first then apply gor disability site, but have a chat with Attitude if you want to think about next year)
Ps the viewing platforms are amazing, you are above the crowd and don't get knocked and can see the bands brilliantly. !
Enjoy your hugs , maybe meet you In a field someday x
Thanks for the info. I got hit by this last year after being taken off pred after 18 years at 20mg. exercise and supplements kept osteoporosis at bay. But when they put me on hydrocortisone after about 5 weeks I woke up one morning and couldn't move due to pain.
It was then backward and forward to docs endo, rheumy, I can self medicate with pred and if the pain gets unbearable I keep some spare coz sometimes the pain breaks through 60mgMR morphine x2 daily. I started on pred as I got UC in 1992 and with azathioprine that cleared up in about 2005. By that time I had already got RA in my hands and was steroid dependent. I was asked to come off pred eventually last year and the above happened. It's getting to the point now where I'm in flare more than out. And they tried me on methotrexate. I've never been so ill in my life. According to the rheumy nurse I'd had a severe toxic reaction. And I was never to take them again. Today I finally get my azathioprine back which worked for me with UC. Just hope it works with this.
Hope to see you in a field somewhere sometime. Or at a gig.
Sorta same here, mine is being controlled by steroids a lot. However I'm glad your back on your aza and hope it helps.
Just a though , have they never thought you need more than disease modifying drugs, but maybe discuss biologic therapy. I'm trying Rituxiab at the moment and feeling a good but better on it , early days but will see how it goes!
But I hope the az kicks in quickly and you feel much better very soon and don't let the RA take over the gigs, it's doable with the help!!! Id rather be in pain listening to music than on my own in the house!! I find it very soothing and distracts me from the whole RA thing, going to gigs makes me feel like me again, if you get what I mean!
It was set up by a lovely girl called Suzanne who has spinal bifida and uses a wheelchair. She couldn't see why she couldn't go to festivals with her friends, so started the charity, she got a well deservedcMBE !
And of course I'd still be in bed if it wasn't for the help and support of NRAS!!! I did a double page spread in their newsletter a couple is summers ago , maybe it's still possible to access ( pardon the pun) the article! X
Hope you have a great time at Leeds Festival. The lovely article you wrote for our magazine about 'Attitude is everything' and your festival tips can be found on our website:
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!! Such a positive post 
Methotrexate, now in remission. 
Ready for the new year
Ready for a Ra Ra Ra
Just despairing now...
Now I'm itchy on top of everything else.
