How to be a Zebra at V Festival 2015

First off, you may notice that I've given the blog a little make-over. I hope you like it, I'm still working on it and trying to negotiate the art of blog design so you might see it changing little bits here and there over the coming weeks.

Anyway, I'm going to blog about my weekend at V Festival with my girls. I'm also going to talk about how I tackled a full weekend music festival and camping with my stripes. 'Doing' a festival is such a fantastic experience and really is one that I must recommend to everyone even if you have a chronic illness or disability. I'm going to share with you what I've learned from the festival in case there is anyone else with a chronic illness or disability who is planning on going or wondering if it is for them. For me, it was an amazing experience but certainly not an easy weekend by any stretch of the imagination both physically and for them stress levels!

I'd planned my trip quite meticulously and had to list and re-list what I was going to take with me - so that I didn't end up stuck in the mud (lol, pun) nor did I end up taking crap that I didn't need. After I'd packed all my medical supplies there wasn't a huge amount of room for much else, so whilst all the glampers were kitted out in their cute little outfits I was hanging in leggings and tops the whole time.

Everyone who knows me will know that I am cold 99.9% of the time, and most people have never seen me at that 0.1% because it's so rare. I predicted living in a field for 4 days, I would be cold because I'd have nowhere to go to warm myself up the whole weekend so I packed warm. I was literally boiling for 3/4 of the time I was there. It was beautiful, I even got sunburnt, and I don't really ever remember being sunburnt in my life ever. It was an experience.

So, I'm going to say that the stress of V Festival began before the festival even started, from packing my bag to driving arrangements - it was all happening in my head. I really don't worry about these sorts of things usually because I kind of just think if the worst comes to the worst I can come home and problems can be sorted one way or another. I was really tired from the weekend before and wondering how I was going to cope (I cannot remember the last time I had a rest day right now).

If you're going to share a tent for 3 nights then make sure you share it with people who know you well. I'm always worried about doing new things with people who don't know me and my illness really well because I always feel a bit exposed if I have to 'be ill' in front of them. The girls know me quite well but it's one thing sharing a house where everyone has their own personal space and you can do your own thing and another sharing a tent - the tent was smaller than any one of our bedrooms. I think I was quite worried about that. If I was ill, we were away in a tent together and the pressure of ruining someone elses weekend is quite prominent. I know the girls have always been good about my illness but I was still worried that my 'extra baggage' might have been more in their face when sharing a tent.

We camped in the normal camping, though there was disabled camping and I think in future I might opt for that as you can go in and out of the disabled camp which would be better for if I needed anything from the tent or if I was ill and wanted a lie down and it's also a little nearer the arena. We camped at the farthest camp site from the arena 'Gold camp site' which was about a ten minute walk but it meant it was quieter which was what we all wanted/needed.

I was also worried about the busyness of the festival and about my bag getting crushed in big crowds or my tube pulled so I was on the look out for that all the time and getting a bit paranoid. This is another reason why you should go with people who know you well because you need someone else to understand your limits.

On the first day we set off at 6am meaning that we had to get up at 5am. If I went again I would probably set off a bit later. We set off early to avoid traffic and get a good tent pitch but we ended up stood in a queue for 2 hours carrying all our belongings on our back and in our arms which was extremely painful and difficult for me (and for the other girls as well). The queue died down later on in the day and the camp site did get busier but people came on the Saturday and still managed to get a pitch so if I were to go again I'd set off later and opt for busy traffic over standing in a queue with bags.

It didn't take us long to get our tent set up and all our bags inside and we all had a rest before heading up to the arena to have a look around and get our wristbands. There was some events going on down at the arena on the first night that we had all planned on going down to, but in the end we were all so tired that we were in bed for 9.30pm - absolute grannies!

I was so proud of myself until I realised I had to carry this and more for two hours. It hurt.

Irwin done Gold Duke of Ed and had nothing on us.

Tent up like pros

Saturday was the first day of music and it was super hot and sunny for it. We could not have asked for better weather! There was a great line up on Saturday and I was absolutely buzzing to see George Ezra. On the first day we saw: The Proclaimers, Gregory Porter, Scouting for Girls, Ella Henderson, Ellie Goulding, The Kooks, GEORGE EZRA, Kodaline, The Script and Calvin Harris. I think the Saturday was probably my favourite day music wise, largely because I got to see George Ezra but Kodaline and The Script were also amazing.

A non-musical highlight of the Saturday was when I went to get a toastie from a gluten free-toastie stand (I won't bother in future) and took two bites out of it before I was attacked by a wasp and flung my toastie about 10ft where it hit an innocent and very startled man. The girls thought it was hilarious and I couldn't get my head round what I had just done with my £6 toastie. Oops...

After the toastie incident I found a 'carvery' van and decided a bit of plain meat might not do me any harm but the soggy £6 dollop of pork made me quite ill and I was worried I might have to miss George Ezra. Advice: Never trust a portable van that calls itself a carvery.

After George Ezra (did I mention that I saw George Ezra? He was so good!) the girls went to get some dinner and the heavens opened. We'd bought some £1 ponchos so they came out and we looked fit and stylish in those beasts for the rest of the night. After food, we went on to see Kodaline on the MTV stage followed by The Script and Calvin Harris on the main stage. It was thundering and lightening for all three of these acts but it did not kill the atmosphere one bit. Calvin Harris was quite rough on my back-pack which made me feel a bit uneasy, but we were really near the front and it was an absolutely buzzing atmosphere.

Here are some pictures from Sarturday:

Survived our first night

The Proclaimers

Henna tattoo for Meggy B

Henna tattoo for Little Meg

All of our henna tattoos

Ella Henderson

EZRA!

Had my picture with George Ezra... sort of.

Kodaline

The Script

Calvin Harris

I wasn't feeling too good by the end of the day and was struggling to walk so my lovely Irwin carried my backpack for me and when I got back to the tent I dosed up on some of my stronger meds and I slept like a dream!

On Sunday we went down to the arena a bit later because there was nobody on we wanted to see until 2.35pm and that was James Bay who was excellent. It was really hot in the morning whilst we were sat around the tent but when we got down to the arena it pelted down again and after that it was really cold. We bought new ponchos (well, I did because my day 1 poncho had ripped) but they didn't have sleeves in and my jacket got soaked which made me colder. So I ended up forking out £40 for a V Festival hoody. Saying that, it's really soft and cosy so it was probably worth the money.

On the Sunday we saw: James Bay, Tove Lo, The Courteeners, Hozier, Sam Smith and Kasabian. So many good artists. I wasn't too bothered about seeing Sam Smith at first but he is REALLY good live. We were right at the front for Sam Smith which was incredibly rough but luckily, Irwin stepped in again for me and held my back pack the whole time. Massive thumbs down to the twats who pushed passed us, poured their drink over us and nearly ragged my tube out. I hope you never know what it feels like to be stood in a crowd of thousands of people, connected to your friend through a delicate tube in through your abdomen. People are so inconsiderate. One of them was about 6ft 5 and I stood with my face in his stinky back pack for the latter half of Sam Smith whilst his friends kept turning around to stare at my tube and watch me struggle. I appreciate this is the nature of gigs as I have stood in much more rowdy ones than Sam Smith (refer Hadouken 3 years ago!) but I didn't have my back pack on last time. I'm aware that you get knocked about and was prepared for that, but then there's just people being blatant knobs and that was these people. Despite this, Sam Smith sounded amazing and even though I wouldn't usually have listened to that sort of music I enjoyed him! He was absolutely awesome live especially singing Latch and La la la.

After Sam Smith we headed to some space at the back to watch Kasabian finish off the weekend. I actually can't tell you how amazing Kasabian are live - they are absolutely insane. The atmosphere for Kasabian was the best one by far all weekend and the music they were producing was just unreal. I've wanted to see Kasabian since I was about 15 and as high as my expectations were for them, they way exceded that. Seriously, you have all got to go and get yourself tickets to go see Kasabian. I want to go back there. My fancy for Serge has expanded.

Here are our pictures from Sunday:

James Bay

Hozier

Nervous smile for being squished at the front for Sam Smith.

Sam Smith

8 years after I first heard Kasabian, I finally saw them live!

Kasabian

So that's a round-up of the weekend. I arrived back on Monday afternoon and went back to work yesterday (Tuesday) I was SO tired. I still am. I'm just keeping my head above water now until the weekend where I have my first lie in, in... I don't even know how long. Just exhausted right now but so happy.

I'm on such a come down from the festival, I just want to be back there. It was absolutely amazing and I just encourage everyone to do it. Here are my top tips for taking on a festival as a zebra:

1. Don't pack too heavy - it's really cramped in a tent anyway, and there is nowhere to put your stuff except on the floor even if you have a big tent. The more stuff you take, the more stuff there is to get lost. It's also really heavy to carry from the car to the campsite.

2. If you're ill/disabled go with people you know really well and who know your limits. It's a long time to be out and running on spoons that you don't have. Go with people who are on your level.

3. I didn't do it, so I can't full recommend it but - camp disabled if you need to. There is no shame in it and you'll probably get nicer toilets.

4. You can still get a perfectly good view without going into the mayhem at the very front. The atmosphere is the best part anyway, and you can get that wherever you stand. Don't jeopardise your body to get close.

5. Don't eat the food. It's rank.

6. Take comfy shoes! Invest if you have to - pay more for your shoes than the tent - I did! My friends wore wellies which was great for them, but if you have bad joints then get some decent waterproof walking shoes. My feet were sore anyway but they would have been worse in wellies. Wellies are cute for festivals, but I'd rather not be in pain and have a decent, supportive pair of shoes. You're on your feet all day without a break - once it starts raining you can forget sitting down on the floor!

7. Take plenty of water/drink plenty of water!

8. Don't bother taking waterproofs - they're just cumbersome. Just buy a plastic mac when you get there! I took a warm waterproof and a summer lightweight and used neither of them. You can't carry craploads from the campsite to the arena and you don't want to be carrying it round all day.

9. Remember toilet roll. Expect disgusting toilets.

10. Be prepared for it to hurt afterwards - I don't have the perfect way for us Spoonies to do a festival without consequences. They will be there and it will hurt like no other. It is probably one of the most physically difficult things I've ever done but it was absolutely the BEST experiencee and it was 100% worth every single bit of pain.

I'm feeling so very happy right now and have some very precious memories. If you haven't done a festival then go and do one! You can thank me after!

Last morning - it was freezing! We survived!!

Liverpool Big Fun Run and a mad weekend of moving house....

A massive thank you to everyone who donated to my fundraising page and also to everyone who shared it and those who shared my previous blog post. I really appreciate each and every one and was overwhelmed by all the people who went out their way to press share on it. Not only was it so great to see so many people spreading the word about a fantastic charity but it was also really great to see so many people helping me to educate and spread awareness :) Thank you from the bottom of my heart. The boost in donations in the hours leading up to and after the run was awesome - they spurred us on and made our exhaustion feel so worth it!

The run itself went fantastic. Sam and I drove to Ormskirk to meet Hannah and Becca and then we got the train to St Michael's station together and then walked from there to Sefton park, so we'd already had a warm up and done a bit of exercise!

As we were walking up to the park the heavens opened and we got soaked. I was walking in shorts and t-shirt - highly unlike me, I know - as was Sam. As it got nearer to the start time though it brightened up and was lovely and warm and sunny for the actual run.

Before the run, Sam and I spoke to Brodie, the lovely DJ who gave PORT charity a good plug and let us explain why we were running and what it was all about which was another good opportunity for us. He spoke to lots of different people who were all running for great charities such as MNDA (Motor Neurone Disease Assosiation), SANDS, Macmillan, NSPCC and loads more. He also spoke to lots of people who were just running it for fun and hoping to get round the course with a good personal time so there was a great atmosphere before the race.

Sam and I got fairly close to the front at the start line so it didn't take us too long to get going. Sam hasn't done any jogging before but absolutely flew round without hardly breaking a sweat. I on the other hand had done quite a bit of training and was absolutely pooped at the end. I haven't managed to do any jogging since I came out of hospital but I did manage to do quite a bit of exercise when I was in Scotland so I wasn't too unfit. I've been jogging on and off for about 2 years, with the 'off' periods being when I've been too ill and also I didn't do very much last summer when I was working. I've always done 'interval' jogging - a regime of running and walking - with the longest I've jogged without walking being 8 minutes once. My 5K personal best was 36 minutes. However, it's amazing what a good charity on your back does for your will power! Sam and I completed the race in 31 minutes AND... we jogged the whole time! So, I've gone from jogging 8 minutes (which I probably haven't managed in well over a year) to 31 minutes solid. I was bouncing off the ceiling with happiness when we crossed the finish line, not least because I was knackered and just wanted to stop running, but I couldn't believe how quickly we had run it in!

Before we started the race

Posers!

Talking to Brodie, the commentator/DJ

Crossing the finish line and feeling ecstatic!

With our amazing fan girls, catching our breath after the race.

We got some medals and a little goody bag each, caught our breath on the grass for 10-15 minutes and then we headed back to the train station so that we could get back to the house. We had to move all our stuff out of our old, smelly, wet, rancid house on Saturday and hand the keys back (so much good riddance!) and into a much fresher new house. Once we got off the train we headed straight to the former 'Blue Juice and Java', now 'Cobble' - our favourite place in Ormskirk, for a bit of a refuel and then we went back to the house.

I left Sam to put some drawers together (I had nowhere near enough storage space with only one small wardrobe and nothing else so had to get a couple of cheap sets from B&M!) whilst Hannah and I began shifting our stuff. We didn't finish moving everything across until 9.30 in the evening and then we were left with bedrooms and hallways full of boxes and bin bags and the task of unpacking began. By this point, as you can imagine I was absolutely exhausted beyond belief. I unpacked as much as I could, had a shower, made my bed and then got in it and went flat out. I was so ready for it!

I don't know how any of us were still standing at the end of the day.

I'm absolutely shattered now, I just wanted to sleep at work all day and so I'm going to sign off and go to bed as soon as I'm finished with this. All my muscles are also understandably stiff and sore after my run and I've been hobbling about like a crippled penguin all day. It was all so so worth it but I just need to play some catch up now. I'm going to try and get as much rest as possible as I'm off to V-Fest with the girls this weekend. I'm so excited to see George Ezra that I might just wet myself (NB: figure of speech.)

Team Ham Run for PORT!

This weekend Sam and I will be running The 5K Liverpool Big Fun Run for a super amazing charity called PORT (Psuedo-Obstruction Research Trust). The charity is the only one of it's kind raising funds for medical research into Intestinal Failure. I want to say a really huge thank you to everyone who has so far sponsored us for this event and I especially want to thank those who have sponsored me on several occasions over the years when I've been raising money for my favourite charities.

Here is my final plug as I will be heading over to Sam's after work tomorrow so we can head to the race bright and early on Saturday morning.

Why raise money for PORT?

The chances are, that until now you have never heard of PORT. They are a small charity that single-handedly, tirelessly raise funds for research into intestinal failure, working with the (very few) lead doctors with a specialist interest in this underfunded field.

As most of you know by now, I was born with a genetic disease called Ehlers-Danlos syndrome. Secondary to and as a complication of this genetic alteration I have a severe functional bowel disorder which means that my bowel struggles to cope with the digestion of food.

In healthy people, the bowel moves food through in a process called 'peristalsis' - this means the bowel has co-ordinated contractions that pushes food through the digestive system whilst nutrients are absorbed into the bloodstream along the way. In people with functional bowel disorders such as psuedo-obstruction, enteric neuropathy and dysmotility, there is no peristalsis. The bowel may shut down completely or lack the co-ordination or muscle tone to push food through. This causes sufferers to become malnourished and dehydrated.

Symptoms of this include vomitting, severe pain, bowel blockages and swelling of the abdomen. This is constant and daily and many sufferers spend long periods of time in hospital whilst doctors attempt to control the devastating symptoms. Most people with these conditions rely on tubes into the stomach, bowel or bloodstream in order to receive the nutrition that they need to stay alive. All these forms of artificial nutrition carry risks of their own. Many sufferers undergo major surgeries and live with permanent stomas or drains throughout their abdomen, emptying the digestive system of the build up and waste that it is unable to push through.

Complications of the condition and their necessary treatments include sepsis and multiple organ failure.

My condition has deteriorated as I have got older. As a teenager I was so sick I spent all of my time bedbound or in hospital hooked up to hydration. I was unable to go to school for three years and through poor nutrition I lost the ability to walk.

Through the stress placed on my body as well as the effects the illness had on my mental health I began to lose my hair.

As I went through college I underwent immunosuppression treatment due to high levels of inflammation caused by irritation in my bowel. This was followed by the placement of my feeding tube. At first the feeding tube went through my nose and into my stomach and then a longer tube was placed through my nose which went all the way through to my bowel. This tube had to be replaced on an almost weekly basis through interventional x-ray as it caused blistering in my throat. The tube would have to be removed for a day or two, when I would recieve very little nutrition, whilst the blisters in my throat healed. Then another tube would be passed into my bowel again. After a week the whole process would start over again.

Eventually, I underwent surgery to fit a tube through my abdominal wall. I have been on this form of feeding for 4 years and I now await a bed on a specialist unit to begin parenteral feeding (feeding into the bloodstream) as my bowel becomes increasingly unable to cope with the formula feeds that are run through my tube.

I desperately want to see a day where quality of life is improved for patients who suffer and undergo so much disruption and pain in their lives on a daily basis. These conditions are so poorly understood and recognised that there is very little treatment out there to improve their lives.

We can't take painkillers because most painkillers further slow the bowel down meaning that it causes further pain. Most tablets are not absorbed, sit in the bowel for a long time before they are allowed a chance to work or vomitted or drained out before they have a chance to get inside us at all.

So few people have heard of the condition and realise the extent of what it causes and therefore, why would they pledge money into curing it?

I appreciate that not everyone has money to spare, but if you do, you are helping to fund research so that maybe one day none of us will have to suffer. If you share either this blog post, our virgin money giving page or even your own words, you are educating people so that one day they too may be inspired to pledge a little bit of money into research and one day children and adults will be free from their lines, tubes, backpacks and pain.

If you can sponsor or share our page please, please consider doing so.

www.virginmoneygiving.com/hamforport

THANK YOU!

Lytham Festival

Every year, here in Lytham, something exciting happens - which is rare for Lytham. What was once just known as 'The Proms' with a few oldie I'm-A-Celebrity-Rejects followed by sophisticated enormous classical music performances on the final night has had some really good line-ups the last few years. This year it went from 'The Proms' to 'Lytham Festival' - which almost makes it sound wild. Indeed, it even had camping this year!

What was obviously most exciting about this year was that McBusted were on and Becca, Irwin and I were quick in there to grab our tickets! Mcfly and Busted are both 'my era' - that neither makes me sound old or young and so that is ok. I was about 9 or 10 when Busted emerged and I was 11 or 12 when Mcfly emerged with '5 Colours in her hair' and everyone was like 'aaahh, they're trying to be Busted' but then they kind of took over a bit. I saw Mcfly live when I was 13 (Dad got me tickets for my 13th birthday! Number one Dad award right there because he even had to come with us) and Irwin and I saw McBusted last May (and almost didn't get there because we spent all day in Wythenshawe after my tube fell out in the morning - number one babe for driving me to the hospital when she'd only just got her car over to England two days before and had never driven on English roads or motorways!)

Anyway, McBusted were on, on the Saturday - which we had tickets for! We also went down on the Friday night and sat outside and listened to 5ive (earlier childhood favourite - I was probably 5ive years old when they emerged and could word-for-word sing their entire catalogue and as they say you get down with 5ive when they come your way). It was a bit of a rush to unpack after Scotland and then get ready to go out again but I made it and we sat on the green listening to 5ive, Sinita, Billy Ocean and unfortunately arrived too late to catch the Vengaboys. Apparantly Mr Cowell was staying in the Clifton Arms in Lytham (where my Dad got married!) which was another exciting event for the town. Irwin and Becca got slightly merry on Pimms, Cider and Vodka, pulled some Poulton #lads and ended up getting stranded in Lytham afterwards. Luckily they were 'consesmensus' enough to make a phone call to me and I managed to find them amongst the crowd and drive them back to Becca's whilst they told me about sticky toffee pudding. I just love being the sober driver!

Before booze.

After booze (totally 'lets prop each other up')

Saturday we had a girls shopping day in Preston as I needed to get some presents and I also treated myself to a cheap digital camera for V-Fest then we came back to get ready for McBusted. Becca predicted that they wouldn't be on until 9 - and was pretty much right - but we had a last minute panic following a phone call with ticket line and dashed out the house at 7.30 in case we missed them.

It was such a good night and I didn't really take many pictures or videos of them playing (one picture and one video!) because I was too busy fangirling and I also hadn't had chance to charge my phone all day. They played such a good set list even though our favourite - Who's David? - was missing. They played loads of different ones to the first time we saw them, including some different classics as well as some newer ones and some of the same old favourites. We had a really super night and it stayed fine (if not a bit cold!) all night as well which was a bonus!

On Sunday I planned on staying in my pyjamas all day but then my laptop completely gave up the ghost for the 3rd time so I just pushed the boat out and bought a new one. I ran out to Staples throwing on some leggings and a woolly jumper over my pyjamas because I was determined that I would still have a pyjama day. This is my first laptop that I haven't bought from PC World because, after my last two TERRIBLE experiences with my laptops and their customer services, I didn't want to give them my custom anymore, tempted as I was to run across the retail park and press (x10) the sad customer button that they have in their doorway as I now always do when I pass by (because... mature adult, angry customer). So far, I am loving my new laptop though! It runs on the swish Windows 10 and the kind staff at Staples also gave me a hefty discount because the only one of the model I wanted that they had left was the display one. It runs like a dream though, and it was already set up. Thank you Staples, you are presently much favourited over PC World - do not upset me!

I had renal clinic yesterday followed by an adorable visit to the lovely new baby William Stubbens who was even more delicious than I anticipated! I don't really have anything to report from renal - just regular bloods and come back in 6 months time. I headed straight to Burscough to pick Sam up from the train station and then we stopped off at a cafe before heading to meet Jess, William and Tyler the dog for lots and lots of baby cuddles. I got seriously broody, let me tell you! We went out for a little walk and ended up at the pub where we ended up staying for the rest of the day/evening once Ben joined us after work.

Today was my first day back at work after a nice 11 days off and I ended up doing 11 hours. It will look good on my time sheet but talk about easing yourself in gently - I was not planning on that. I'm pretty tired now because I haven't actually been in from work that long so I am going to treat myself to an early night :)