Sod the flare,I needed cheering up 😊

That's it - I've had enough misery this week,so when I opened my email and saw that a couple of my favourite bands are headlining this years Reading festival,I thought sod it,I'm going to have something fun to look forward to!! πŸ˜€

I used to go to a couple of festivals every year for as long as I could remember,but since being diagnosed in 2014,and things just going downhill from there, I decided to throw caution to the wind and book myself a couple of tickets - I know I've got to apply to see if I can get my ticket for free(still not sure how that works) but just knowing I have my trusty Powerchair to fall back on(or into) when things get too much,that's enough to make a girl smile ..... it may be months away yet,but hopefully with months of walking Minnie between now and then,it won't take as much out of me as it would've previously done.... and of course,there's always the hotel afterwards..... an accessible room is lovely,but after a day at one of those things,then you realise how much you need a bath 😊😊 the only worrying question left for this year now is which type of hat do I go for??!πŸ˜‚

Here's to life not being over with just yet,and of course,on the plus sides,we generally get the best seats too.... can't wait to see where they've put me for black sabbath on tues next week πŸ˜€πŸ˜ πŸŽˆπŸŽΈπŸŽ‰

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  • You need to speak to Allanah as she is the expert on going to festivals with being disabled.xxxxx

  • Thanks @sylvi

    I'll see how I get on with their office number first(always give them the benefit of the doubt for the first time)but no doubt I'll certainly be catching up with her by the sounds of it x

  • She goes to a lot of festivals and is well looked after in the disabled section of them.xxxxx

  • That's what I need - experience,I've been to tonnes of festivals,but the last time I went to reading was leading up to my diagnosis,and even though I had a blue badge,I still wasn't allowed to use the toilets(apparently a jobsworth when I complained to the organisers after?!). I definitely need advice on the new version of festivals,although I know I won't be camping - it's just easier to stay in a hotel,or my partner has a brother that lives just up the road,so we may even stay there for free instead,included lifts in and out each day too 😊 X

  • You need to apply on the accessibility for campsite and or viewing platforms and or toilet pass x message me if u need any info x

  • Thanks allanah

    I've spoken with festival republic access team this morning,and the forms aren't out for this year yet - but I've already sent in my pip entitlement letter,and they've added me to the mailing list for when the forms are released. They know it's my first time as being 'disabled',and she just said any questions at all,give me a shout or drop me a quick mail and I'll answer them for you - she really was very lovely.

    Korn have just been added to the line up too,so now I'm super excitedπŸ˜€πŸ˜€

    The last time I saw korn was with slipknot at Wembley arena a yr or so ago - when I used to work we were at gigs almost every month,unfortunately I don't have that kind of money spare anymore,so have to plan wisely.... but I'm so looking forward to black sabbath on Tuesday!!

    I'll keep you posted if I need any questions answered,ta. I know that you have to apply for wristbands for just about everything as the last time we went was 2014,literally just a few weeks before I got diagnosed,and because I had my blue badge on me,the very nice guys at the disabled entrance gave me a wristband which meant I could take the shortest route in,and also use the loo when needed - I can understand there need to keep them free for the ticketed,but I was a 41 yr old woman,not a young girl about to do stuff in there a kid would do,so that really helped too,as at one point a jobsworth keeping track of the toilets wouldn't even let me use one,even though I had my badge with me and I physically couldn't put my left foot on the ground without crying in pain!! Common sense should have prevailed on that one,but unfortunately didn't!! This time,with Powerchair and cozy toes to hand,I can't see me having too many issues in there,esp as those powerchairs are FAB for offroading... last time I remember using it like that was at the foos gig in Milton Keynes.... it was great..... never had such a great time getting back to the car before then πŸ˜‚ X

  • Great yes festival Republic all know me, if you're talking to the gorgeous John say hi from Eileen at latitude. When you get your letter about your application ask for toilet and viewing platforms and a free carer place. Lol out for SUZANNE at Reading. She started attitude (*they run the sites on behalf of festival Republic) tell her you were talking to Eileen x you will love it so much easier! However as a volunteer we get hundreds of folk with badges I'd etc wanting to use loos, they don't get sacked out each day so we r told not to allow anyone who doesn't have a wristband as the amount of toilets depends on no of wristbands! I know common sense but it's more than our volunteer spot is worth!

  • Yep,I do understand where the volunteer was coming from,it's just that I physically couldn't walk without crying,it was obvious that I hadn't drunk a drop(nor could I on my meds) yet I was made to walk the whole length of the field to the nearest toilet I could use - that in itself took almost an hour,so by the end of it I didn't even go in on the sun,and stayed in the hotel bed watching it on tv!!! All that way,and all that money just to watch it from my room incase unneeded the toilet - needless to say,it definitely took the shine off for me!!

    The woman who replied to my email was callled Laura - I can't for the life of me remember the woman on the phones name,although I'm sure that started with an L too?! X

  • Ah you mentioned me darling!

  • You will have an amazing time! I went to see Avenged Sevenfold and Disturbed at the O2 on Sunday night. They were both absolutely amazing! I'm still paying for the tiredness as we didn't get home until 3am and I've had to work along with a bad cough and cold. But it was definitely worth it! πŸ˜€

  • Thanks ruth_p

    It's too early at the minute,but I think the last gig I went to was the Wembley slipknot/korn gig - I had the most amazing time,but like you say,it's almost done with military precision nowadays because of how long it takes to recover from it after!! Glad you had such a great time though - one thing I will say is that I've never had a bad experience at the o2 since being 'disabled',and that goes a long way to help making the night a success too

    Nicki x

  • Love this post!!! SOD this Flare!!! What an awesome attitude!

    Go and enjoy Black Sabbath :)

  • Thanks suzannedale

    That was exactly how I felt at the time - I'd spent most of the day in bed unaware of the day going past,when I just randomly saw the email with kasabiam on it,and I just laughed,as my first experience of this particular festival I was crowd surfing to this band,and st one point got a welly in the head(as you doπŸ˜‚) all par for the course though 😜

    I'm sooo looking forward to black sabbath,as it's their last tour,and the last time I saw them was at #lolla over in Chicago in 2012(if memory serves me right) it was a fab weekend,and Chicago certainly know how to do a festival in comparison to the uk - it had to be st least 3 times the size,and even though we got evicted for our own safety at one point (I definitely know why it's called the Windy City now!!) it was just done with such ease that you never actually felt like you were in any danger until the sky turned black and you were still trying to find a bar that could fit us in!! Think my friend ended up working behind the bar for a few rounds at one point😝 If my friend hadn't come back home to work,then I'd be out there every year if I could - it's a fab place,and given half a chance,I would've bitten her arm off to swap places at the time 🀣 X

  • Your excitement is infectious!! i can just imagine you crowd surfing in Chicago lol.. i've never had the guts to crowd surf before, but now i do. Oh to have the freedoom to do whatever you want without thinking about RA....;)

  • Luckily this was before I was diagnosed,and was very fit - I daren't do it now as I'd dread to hear the bones breaking as I attempted it 😝 X

  • That's the way to do it! We are the ones in charge, not the blighted RA. I hope you will enjoy every moment of your adventure. I made up my mind as well. I'll be going Coasteering on my 68th birthday this summer. All the best.

  • Thank you stbernhard

    I'm only 43,and I've tried as much as possible to not let this disease get the better of me - it's already won to an extent in that I've almost retired nearly 20yrs earlier than planned(wasn't planned for either,so not enjoying being skint) but I do aim to get back to some form of part time local work in the next yr or so.... this is my first winter with my disease 'under control' to an extent,so it's all one huge learning curve - but I've already missed so much because of being ill(jobs,holidays,festivals etc) thatvive devided its time I start taking some control back,otherwise it's like going back 18 months,and I'm not willing to do that without a fight!!

    Hope you have a fab time for your birthday,and I'll look forward to the pics and posts once you're back and recovered 😊

  • Thank you. I have lived with RA for seven years now and I was never tempted to give up the fight.

  • njk73 just to let you know just been on my email and found your letter and photos of your cats thank u so much i have put them into a folder hope u been okay and not in to much pain havent been on that much lately doctor now put me on naproxen what a difference they have made take lots of care mary xx

  • That's great news mary4444 that you've finally found the pictures - now when I talk about them at least you can have an idea of who I'm talking about now 😊As we speak,mog is currently curled up on my lap having our 'me' time cuddles😻

    I haven't been on much lately either as I've had a bit of a flare up and have been mainly sleeping - so much so that I slept right through to 3pm on wed!!

    I'm glad they've finally found something to help with the pain,as it does make a huge difference to your life quality each day. Hope you finally manage to make more of each day with these new meds.

    Take care

    Nicki xx

  • njk73 yes doctor put me on the naproxin not rhumy also doc getting in touch with rhuemy to bring my appointment foward said april to long to wait we will see you must have needed that sleep pain tires u out how is little minnie the minx doing lol animals such good company they brighton up the bad days i am sure we will all feel better when the warmer weather here u take care and look after yourself mary xx

  • Thanks mary4444

    Unfortunately I keep putting minnie in her cage when she gets too wound up from playing and chasing the cats around the front room.... unfortunately I then fall asleep and wake up hours later with her still in the cage 😳

    Luckily because she's so small,the cage is huge for her,so it's not all bad,just means she's limited to the damage she can do herself and the house while I'm not looking πŸ˜‚ X

  • that sounds just like minnie lol she looks like a little angel mary xx

  • Hmm,looks like an angel,but is actually the devil in disguise!! She really has kept me on my toes!! X

  • Njk73, oh i do understand about wanting to get back to work albeit part time. I'm 50 and i've been off work for almost a year. i hope to go back part time this spring/summer. i hate being broke....grrr

  • Hi suzannedale

    It's not even the money which is the biggest part for me,(although that really would help bundlesπŸ˜‚) it's the fact that I've never not worked since the age of 15(it was legal to start work back then if your 16th birthday was in the school holidays). I literally feel lost without a reason to get up - although on weeks like this one I am grateful that I haven't got to call in and speak to someone that really doesn't give a stuff about my wellbeing,but in general I need to feel like I'm needed.... and not just for feeding animals either. That's the other part,I can't even commit to charity work as they usually want certain hours filled each week,and I'm not that far down the line with my health to be able to commit to that yet either - I feel a bit like I'm stuck in limbo land,and that really is the hardest part. I feel Like I need to have a good solid few months of routine behind me before anyone will even look at talking to me,which is such a shame,as I've got more than 26yrs worth of experience in the financial/commodity and energy markets - most companies would tear your right arm off for that type of experience nowadays. But hey ho,I can't keep letting them get me down,so I'm just using it as time to enjoy my doggy while she's still a baby(and also try to teach her that certain things are off limits when it comes to playing). Luckily the cats are slowly getting used to her,and the past few mornings(or what I can remember about them) have seen me doubled over laughing at my Maine coon cross trying to jump out on a dog that is a third of her size,catching her claws in something then usually falling flat in a heap in front of said dog,that just looks bemused 🀣

    Luckily mog hasn't given up and is still chasing her(all good news for me,as it means my little family are finallly bonding) but it's just so funny to watch a cat that is meant to be graceful be anything but!! And then of course,there's Minnie,the star of her first puppy class last week(we already had all the commands/exercises learnt before we'd gone,not planned,but because I'd already had her a month,it was hard not to get her to sit,lie down,and walk on a lead,or come when called) but we're having to miss tonight as I couldn't dare get behind the wheel of a car in my state - it wouldn't be fair to minnie,or anyone else on the road,if I passed out at the wheel,which used to happen a lot before I realised it was part of my flares.

    Fingers crossed,if I'm a bit more alert next week I can get a couple of pics of the cat and dog playing chase,so you too can see how funny they look - and also,how now matter how hard I try,I cannot get any clips in Minnie's hair above her eyes at all - I'm surprised she can see where she's going at all,she literally looks like she's rocking the bed head 24/7πŸ˜‚πŸ˜‚ x

  • I too have a cat, though she is not a loving cat. She is an ornery nasty feral cat. We've had her for 15 years now.

    She was born in the wild and was the runt of a litter. i used to go to the field and leave cat food for all these feral cats that lived there. i felt sorry for this baby kitten as other cats & kittens picked on her. So i took her, cleaned her up and took her to the vet. My kids loved her and she tolerated them. We named the cat "Lucky" as she was clinging to life when I rescued her.

    Well, Lucky never liked me. She would sit on my lap, look in my eyes to stare me down and pee on me. She would jump on my bed every morning and pee on me.

    Needless to say, i couldn't give this cat away because she hated everyone and would jump on your face claws out.....but she loves my son. My son can calm her down by growling at her and she just purrs when he is around...... I knew if i took her to the SPCA she would be put down.... So 15 years later, Lucky sleeps in my son's room and leaves the house to torment the nieghbourhood. lol

  • I love the fact she loves you so much she pees on you - 'our' first rescue cat thomas did that only once..., the very first night after I picked him up from the vets after being 'done' .... needless to say that was what he thought about the little gem I'd had done to him!! Since then though he's like my baby.... I still swear(and the several vets that have seen him over the years) say too that he must've had a family to start with as he's just far too gentle to people in general.... although we definitely have a better bond than I could've imagined,and I love him for it 😻 But good on you for not giving up on that cat - far too many people would've,and as you say,that would've been the end of lucky - as it is your son has had a lifelong friend who no doubt knows more secrets about your son than you'd ever imagine?! The bond between animals and kids is definitely a special one,and I'm forever grateful to my parents for always letting us have dogs when growing up,along with birds,fish,gerbils and hamsters(our first houses garden must be like something from pet cemetery if it ever got dug up ?!πŸ˜‚)

    My last of the original bunch of 'my' cats when I had my first place got to the ripe old age of just under 19 before an epileptic fit on concrete took him from me,but he was the softest thing you could imagine.... unless you were another cat picking on one of 'his'.... god help them then.... I always remember one particular neighbour who had the toughest cat in our area,but she always had to knock and ask me to bring Fred in so she could get daisy,as much of a bully daisy was,she just wouldn't go past him,even though he never once did anything to warrant her behaviour!! They're funny old things,and I'm glad mine are in my life... as I never wanted kids(decided from a very young age..... my dad's one of 5,and mum's one of 9,so I come from a VERY large family,and as I'm one of the oldest,there are always kids around to borrow if I feel the urge😝But no,I have nephews who live at the other end of town and cousins that are more like nieces than cousins(their mum is only 8 yrs older than me,so we've always been very close.... more like sisters than aunt and niece) and as much as people have always told me I'd change my mind,I never have .... my pets are the only babies I want,which is why they probably get spoilt far too much my sister says?! Who cares,they bring joy to my life,and as far as I'm concerned,that's all that matters to me x

  • Get in touch with www. attitudeiseverything.org I go to Leeds and Glastonbury with them. Once you buy a ticket you can apply for a 2nd one free under the disability access. Attitude run accessible campsites and viewing platforms for disabled deaf or long term mobility issues. Also loads of accessibility info on leeds/reading websites. Cant wait I got Glastonbury an leeds this year!!

  • That attitude is flaming impressive! Great big gong for the lady with the guts to go for it. Reckon I'm too old but - Black Sabbath. Please let us know how it goes

  • You're never too old for music Gnarli - I'm 43 and have been one of the oldest going to festivals for years!! As long as you can feel the music,and it makes you want to dance(in whatever definition you take that as... mine's generally more tapping one foot or hand on edge of seat instead of crowdsurfing nowadays) then you're still young enough!! Life's far from over,as much as some days I do feel like I've been beaten,but as mum says,I'm a stubborn mare,and it's that attitude that's got me everything I've had to fight for so far😈! I've also been known to fight dirty too.... think that's the joy of growing up in such a large family(34 cousins on one side alone at age 8!) but also because I spent my first 11 working years in a male dominated open outcry trading floor - that, if nothing else,certainly taught you to stand your ground and not backdown or they'd see it as a weakness and you'd be easy pickings for life..... literally. I think nowadays I'd probably be able to make a mint from the 'sexual abuse' they'd probably have the banter labelled as now,but it purely was that,not once did I feel threatened,and whenever we were out for the night I was always the first one to be put in a black cab all the way home,quite often paid for by the guys I worked with just to ensure I got home safely!! Luckily I still speak to a few now,and they are still part of my exaggerated family as far as I'm concerned πŸ˜€

  • As I'm now 63 and, tbh never reckoned to get this old, I'll just have to go on bopping around the kitchen. Apart from anything else I can't afford to shock kids again. The pole-dancing was fun though. Happy days

  • Gnarli

    Loving the pole dancing - that's something I always wanted to have a go at when I was going through my hula craze (now that really is something else you need a rock hard core for.... and hips you don't care about bruising for the first 6/7 weeks - I used to come out of there looking like I'd been in a ring fighting!!). Sod the kids,they'd probably be secretly glad they've still got a mum that has life left in her!! My mum always wanted to do a parachute jump/skydive/bungee for her 50rh,and of all the people it was my miserable dad that refused to let her do it - he was never assured enough that the equipment would be safe,but I know she always regretted not doing it,and you shouldn't go through life regretting things you wished you'd tried..., maybe she'll give it a go when he's gone(sounds harsh, but that's my families sense of humour for you - whenever I have a fall dad always asks mum if she knows where my life insurance/will paperwork is kept😜) no malice,just our brand of humour.

    63 is not old by the way, my mum's almost 62,and she did her first festival with me about 8 years ago now.... infact it's down to her that I've got a big toenail that refuses to grow anymore....it never recovered from her jumping up and down on it when she was 'dancing' in her wellies and mac to kaiser chiefs(I did say it was a few years back😝).

    Live life while you can,as we all know on here exactly how precious it is!!

    Nicki x

  • God love her but your Mum sounds mint! We're a bit warped in our family too, thank goodness. This "normal" everyone bangs on about sounds soon boring. I have to think about the kids really - they'll be choosing the ursing home.

  • love your attitude Buttonhater!! i too love to shock the kids. When i have my stereo blasting in the car, my daughter turns it down saying 'oh mom, grow up' lol

  • "Paranoid" by Black Sabbath, at full blast, into the car park at work. M&s prim n proper when I got in. Best fun

  • I used to love driving into work as I could always put a bit of rock on st 5am to wake me up... and it didn't matter if I got stuck in traffic either.... I'm sure my little mini used to be rattling with the speakers going crazy at times,but it was the security guards faces when I had to wind down my window to scan into the car park that was the best.... it was like they'd never heard any decent music in their life?! Foo's were always a good choice for first thing,especially monkey wrench ,just not so sure the security guards thought so 😝

  • That's where I've gone wrong then,it's obviously in my genes - even when mum had migraines when we were kids,she couldn't stand the sound of the workmen outside,so used to put her albums on at full blast instead - that noise she could deal with apparently! I'm just glad she's always up for trying new things... like her first festival ,I'm sure she must've been early 50's,but I was happy to have her by my side 😍

  • I beat you being going to festivals and gigs since 5years old and now 57!

  • That's like my other half - he was very lucky to have parents that took him to gigs from when he was a toddler - some of his gig shirts are so fragile because of age that they're virtually priceless - I just wish I had that option as a kid.... still,at least music was part of our weekends on a regular basis.... I've since worked with people who didn't even recognise a vinyl when we found one in an old locker!! Her parents are older than mine,so I thought that was sad 😒 No matter how young you are,if you have older generations in your family,then surely you should know what a vinyl is,even if you've never played one?!πŸ€”

  • Yes I took my kids from young and they still come with me x

  • Thank you all for the really interesting posts. I have enjoyed reading about all your lives. Carol xxx

  • Thanks Carol41

    Glad to have been of service,and if it made you smile for a few minutes,then even better x

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