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Your experience is valid

You may have recently seen a video of a wheelchair user standing up at his wedding with the help of his friends. The video has sparked a range of reactions from sympathy, to inspiration, to solidarity, to anger from the disabled community that the man is somehow being ‘untrue’ to himself.
I work in patient experience and my job is to ensure that lived experiences are central to decisions – from the way patients are treated in hospital, to the opportunities and support that are provided in the community. This isn’t one size fits all. One person will tell you they prefer one thing and another will have a completely different opinion. An example of this is a piece of work I’ve been doing recently with people affected by cancer, looking at the way information is given at diagnosis. Some people will tell you that they felt ‘information overload’ and that receiving booklets of information after receiving a cancer diagnosis felt inappropriate, and some people will tell you they want as much information as possible about their cancer and treatment. Neither of them are wrong. They are both right and we can listen to them both without invalidating the opinions of another.
This isn’t the first time I’ve felt uncomfortable by campaigns by disability activists. It’s great that people can use their voices and social media is a superb platform for offering your experiences to people who may not have the same understanding. But just because someone has a different experience to you, that doesn’t mean your experience is invalid.
An example is of this is the way we use language to talk about disability. It’s true there are terms that may be deemed outdated. I don’t like being referred to as ‘handicapped’ and I know many of my friends feel the same. But I’ve met older disabled people who happily refer to themselves as handicapped. That is not wrong. Everyone is welcome to identify the way they wish. If someone referred to me in that way, I’d correct them and explain why – it makes me feel like Tiny Tim. Many of us proudly use the term ‘disabled’ as an identity. But in 30 years time, when a new generation of disabled people are using their voices, how would we feel if they told us to change because it isn’t their preference?
Contrary to the feelings of quite a large group of disabled people, I don’t mind using the term ‘suffer’ to refer to myself or my condition. As long as it’s used appropriately. The truth is, I do suffer. I’m in pain all the time. I have nausea, vomiting, exhaustion, joint pain, blackouts and I lose sleep because I have organs that don’t work properly. Whilst that is true, I would hate for someone to use my suffering as a way of evoking sympathy. Or to suggest that my disability and the way I am is something to fear and hide from and be ashamed of. Suffering and having a terrible life are not synonymous. Without sounding too dark, suffering is a part of life. If you don’t have a disability or long-term health condition, you’ll probably still experience suffering at some point in your life. We don’t need to feel sorry for people who suffer.
Just because I use that terminology does not make someone else’s experience and identification wrong. Many people with a disability may feel that it does not cause them any suffering. Everyone views themselves differently and nobody knows you better than you.
As a child and teenager I used a wheelchair. For some of that time it was because I didn’t have the energy to move around without one and for some of that time I couldn’t physically stand up due to shortened tendons. I learnt to walk again when I was 17. I used crutches to get about for two years. Sometimes I still need to use them.
I didn’t learn to walk again because I wanted to be normal. I didn’t ‘regain my mobility again’ by learning to walk. I had mobility as a wheelchair user. My wheelchair was my mobility. I learnt to walk again because it was good for my body. This isn’t the case for everyone and I’m not a better or lesser person for the path my life took.
Learning to walk as a 17 year old was the hardest thing I have ever experienced in my life. It was so painful. And it was frustrating and seemed to take forever. But using my wheelchair also caused pain and problems to my body. So I tried really hard to find new ways of working with my body. My quality of life was always the most important part of the process and I still continued to use my chair when using my legs compromised that. I would continue to do so now if it felt necessary. Yes, I struggled with the perceptions of others as a teenage wheelchair user, but that was never my motivation for not using my chair. My motivation was always to make the healthiest decisions and have the best quality of life.
Just because someone wants to stand up out of a wheelchair or undergoes surgery or physiotherapy to change the way they get around does not mean they are in denial. Just because someone continues to use a wheelchair does not mean they are weaker or that they are giving in. Everybody’s lives and experiences are different and they are all valid.
I love the way that people proudly talk about using their chair, walking aids or other adaptations. A younger me would have benefited from that so much – and a 26 year old me still does and continues to learn. Keep telling people that it’s ok to be disabled, and it can bring lots of wonderful things. Nobody is inspiring for being disabled and nobody is inspiring for standing up – from a wheelchair or otherwise. This is a really important message.
I’m definitely an advocate for sharing your experiences because it could help someone find their own identity. But everyone has different choices and preferences and it’s not OK to assume the way someone else feels based on your own experience.
Your experiences are only yours. They are valid and they are right.
Don’t compare yourself to others and just as importantly don’t compare others to you.
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Iceland Airwaves 2018

For better and for worse, Iceland Airwaves is like no other festival you’ll have experienced. Mostly for the better.

We booked our tickets during the early bird period meaning they were cheaper (£100 each) and at this point we didn’t have any line-up or accessibility information. I’ve been eyeing up Airwaves Festival for years and catching up on the highlights from home so I was desperate to go. We decided to take a gamble, and if the line-up wasn’t for us or if it wasn’t accessible we’d just accept the loss and find something else to do – we’d be in Iceland after all!

We did manage the festival though and we saw lots of it.

Wednesday

The first gig we saw, and one of my favourite moments of the entire festival, was Olafur Arnlads recording a live session at Kex Hostel (the living room of your dreams). We arrived early, and despite being a junkyard of long tables, sofas and chairs, there was nowhere available to sit. An audience was forming on the floor, close to the performing corner as if waiting for a story. Jonny and I found a space to sit on a rug behind the sound booth.

Olafur Arnalds

Olafur creates a sea of silence when he plays. His piano was delicate, gentle, soothing, warming – you would have heard a pin drop. Everything was calm, a hundred people were hypnotised and I could have sat on the rug and listened to him play for the remainder of the holiday. I’d like to see sitting rug space become the norm for gigs in 2019.

A standard had been set and the bar was maintained throughout the festival.

Our next stop was Hildur and we discovered Reykjavik Art Museum. Prior to her performance we were able to sit in a massive glass window and look out over Reykjavik Harbour – it was perfect.

Hildur

I’d heard of Hildur the previous year and she pulled a great crowd in the largest venue at the festival. Hildur won an Icelandic Music Award in 2017 and had more fresh material to perform at Airwaves which we were lucky to catch for the first time at the festival. Hildur is dreamy, poppy, hugely likable and basically a heroine through her power and passion which is written all over her stage presence. If you haven’t heard of her, her latest single Picture Perfect is waiting to be your favourite song of 2019.

For the rest of the night we did a bit of wandering, starting in Idno which got too full to stick around, then moved on to the heavy noise and colour of Gaukurinn.

Thursday

Thursday was another corker starting with some exitotic indie beats produced by the five-piece that is Flamingods (Jonny got me a belting EP for Christmas to follow-up from this gig). In 2017 I discovered a new brand of alternative music and found myself drifting towards happy tribal noises. Flamingods is filling this particular spec very nicely. Contrasting with the icey views out of the windows of Kex Hostel, Flamingods teleport you to a space desert. We stood for most of the performance and we were captivated.

Flamingods

Asgier was one of the acts I was looking forward to the most. He was doing a short live radio performance on Thursday afternoon at Skuli Craft Bar before his main performance on Saturday. Despite getting there early, we had to watch from outside due to the venue being full. I managed to peer in through one of the windows for a short while, but we listened to most of his performance from a gazebo next to the bar, under a heat lamp, in a frosty Icelandic town square where his performance was played through speakers.

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Asgier (through a window)

It was incredibly Icelandic, and he sounded as charming and idyllic as I’d hoped. We didn’t make it to his main performance (or out to the festival at all on Saturday), but it was great to hear his live radio set and hear him chat away about his music at Skuli.

We headed back to Kex Hostel for the next performance – a fair walk out from the rest of the venues but such a warm and welcoming treat when you arrive. We were there to see Fontaines D.C and they created some of the loudest punk noise of the festival. Fontaines D.C have a sound that was made to sound fresh, raw and loud live. They filled an already full Kex Hostel with an Irish charm that is pretty and rough and tasty all at once.

Fontaines D.C

Our Thursday finale was Superorganism who may have sound tracked our Iceland holiday (as well as my entire 2018 and probably my 2019). They played the entirety of their debut album making us feel happy and hypnotised and pleasantly disorientated. I was so excited for their performance. Towards the end of their performance they played Everybody Wants to Be Famous which is one of my all-time favourite songs. Owing to technical difficulties they announced they would play it twice and I peaked. I wondered how Superorganism would be topped.

Superorganism – Everybody wants to be extremely grainy

Friday

Friday was the best day for both of us and Mammut was the highlight of our holiday. We hadn’t been to Gamla Bio yet, so we wanted to make sure we arrived early to get a good view. We had to queue for a while but then we got an amazing spot up on the balcony where we stayed for the following 3 acts. Between Mountains were up first and they serenaded us with Icelandic folk music that was beautiful, eerie and soul-soothing. Between Mountains have incredible talent and control over their music. They’re only 16 and 18 years old but have been performing for a couple of years already. I’m really excited to see where they go in future.

Between Mountains

Fufanu were up next. They were lively as hell and so much fun! This was my first experience of Fufanu and I was very much on board. Fufanu are an alternative techno band who use huge beats to create an enormous sound. The drumming was a force of possession (Erling Bang) and their front man (Kaktus Einarsson) had more energy than a child on blue smarties. They were an absolute treat to watch. Jonny has really enjoyed listening to Fufanu since returning so I bought him a pile of goodies for Christmas.

Fufanu

Mammut followed Fufanu and our Iceland experience peaked. I have been a fan of Mammut for at least 2 years now and I was beyond excited to be catching them in their homeland. Gamla Bio was such a wonderful venue to hear them in with its grandeur matching their massive sound. To me, Mammut are the heart and soul of Icelandic music. Simultaneously eerie and highly addictive. Mammut are more of an experience than a band. They have elements that are poetic and heavy and soft and fierce and visual. I heard they’ve been playing together since they were pretty young and whilst they’ve had some changes this year after losing their drummer, they still sound polished to perfection. Mammut are powerful enough to make your skin tingle and your brain vibrate. They were savoured whilst onstage and mourned the minute they left. Not only the most memorable moment in Iceland but one of the most memorable live performances I’ve ever seen. I’m pining to see them again, but I can’t imagine ever seeing them in a venue so well suited as Gamla Bio.

Mammut

We wandered around for the rest of the night, catching Sorry at Gaukurrin and then catching part of The Voidz back at Gamla Bio (sat on the floor by the door this time). Friday was the last day of the festival for us as we (well, I) was too exhausted to go out on Saturday, so I said goodbye to the festival and gave my body a night to recover.

Access stuff

Not long after purchasing our tickets, we decided to upgrade to VIP. The VIP package offered separate viewing areas and queue jumping (capacity permitting) and so we thought this was probably a useful access tool if all else failed. The upgrades were £70 but included a bag full of goodies including an Airwaves tote bag, a t-shirt, a thermal hat, chocolate, moisturiser and a festival programme. The VIP package proved worth every penny both as a disabled person and a gig-goer.

If I hadn’t purchased a VIP upgrade, I’m not sure I would have been able to see much of the festival. One of the VIP areas was one of the only areas in the festival with seating and whilst we still took part in an awful lot of queuing it was considerably less than it would have been otherwise. The seating area at Reykjavik Art Museum was our go to venue when we needed a rest. A venue like this is a godsend at a multi-venue festival and allowed me to stay out for longer and enjoy the festival.

Being in the VIP queue at Gamla Bio meant that we were first in the venue and got the only seat in the house. If I went back to Airwaves again (and I must!) I wouldn’t hesitate to upgrade to VIP. In fact, I wouldn’t go otherwise. If you’re thinking of trying out Iceland Airwaves, whether disabled or not, I highly recommend the upgrade. It’s an extremely busy festival (like nothing you’ve ever seen before) and venues are at capacity very quickly. If you want to enjoy the festival, see as much music as possible and cut down the amount of time stood in a queue, get an upgrade. £170 for a 4-day festival is not unreasonable.

Soon after booking tickets, I found an email address to contact about disabled access. We exchanged many detailed and friendly emails with Will, head of marketing and ops at Iceland Airwaves who had such a lot of patience and did his best to pull together some useful information for us. He arranged for us to pick up disabled access bands which, he said would allow us priority as long as the venue had capacity. This was extra reassurance with our VIP wristbands, but we didn’t really need to use them as we didn’t feel it could offer any more than the VIP bands. The VIP bands alone made the festival about as accessible as it could be.

The festival certainly had limitations. In many ways it was highly inaccessible. I really struggled in the queues even though we were given priority. We often had to arrive half an hour early for venues to open so we could get in before they reached capacity. The festival itself didn’t seem to have a capacity limit meaning there were more people than they could fit in venues. The crowd tracker was a really useful tool as it told you how busy venues were and sent out a notification when venues were nearing capacity and then again at full capacity.

Many of the venues didn’t have any crowd control. We stood at the back of Idno crowd and kept moving backwards as it got busier until it was so full we were stood outside. For performances at other venues, we didn’t make it inside at all and were stood outside watching through the windows as the crowds spilled out onto the streets. For many performances, it didn’t matter whether a venue was accessible or not because you couldn’t get inside anyway.

If you’re going as a disabled gig-goer my advice would be to get in touch before-hand and let them know your specific requirements, so they can advise the best course of action. They were really helpful. They also offer PA tickets, so utilise that if you need to. Use the app and the crowd tracker, upgrade to VIP, plan meticulously and get to all your performances early. Lastly – explore! Whilst Airwaves is an incredibly busy festival, its also nice and relaxed with a great atmosphere and lots of fun people to bump into and chat to. Everyone will have a recommendation for you!

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Iceland, November 2018

Iceland is my new spiritual home. I loved everything about Iceland and its perfect way of life. Almost as unforgettable as the breath-taking landscape, must-do lagoons, boat trips, caves and the jam-packed 4-day music festival is the standard of indoor heating. The holiday was back to back memorable moments, from the cosy little apartment I now call ‘our home’, to the trips, the scenery, the food, the city and most importantly the music. It’s been 2 months since we arrived back from Iceland, and whilst it’s been a two-month period of recovery that I am only just emerging from, I’ve finally sat down to write it up (grab a brew!).

Accommodation

After booking tickets to our bucket list festival, our next pay out was for accommodation. We did a little research on what was on offer and the best places to stay – from hotels, to hostels, to Airbnbs. The hotels were expensive as was anything right in the city centre, but we didn’t want to be too far out as we knew we’d be spending a lot of time (and late nights) in Reykjavik at the festival.

We found a reasonably priced and extremely cosy Nordic looking Airbnb studio advertised as a 15-minute walk from the city centre. The walk turned out to be a little longer once we got there but otherwise, it was just what we were looking for. Our host was friendly, answered our queries quickly and gave us all the information we needed for our arrival. The apartment was small and cosy but with everything we needed.

I absolutely loved spending time curled up under blankets on the sofa watching Netflix (a ridiculous amount of Peep Show considering how busy we were) and Kexp Radio shows of the bands we were seeing.

I was glad to have our own kitchen, not knowing how I’d get on with food or if I would be able to eat out, as well as the fact that we’d heard Icelandic dining was expensive. The kitchen had an oven, a hob, microwave, fridge freezer, toaster and kettle meaning that I was able to do a little bit of cooking whilst we were there (a curry and late night curly fries) and we could lie in and make breakfast before heading out. The apartment was warm, cosy and absolutely perfect.

The only downside of our accommodation was that it was more like a 40-minute walk to Reykjavik, meaning that we only did it once. Fortunately, there was a bus stop really close to our apartment (all busses in Reykjavik are accessible!). The busses were regular, circular and ran until gone midnight which was convenient. We used an app for our tickets and happily shuttled back and forth between Reykjavik and rest breaks.

If we went back to Reykjavik (and we will!) we would definitely stay in ‘our’ apartment again. It was a perfect, cosy home from home.

[View it here]

Reykjavik

We walked into Reykjavik soon after we arrived at our apartment at about 5pm. From where we were staying it was downhill to the city centre but a long trudge back up. Reykjavik’s aesthetic is truly picturesque and warmly welcoming on a chilly day; washed out pastel buildings with bright roof tops, modern glass venues sharing space with man-made lakes and rustic hostels and of course Reykjavik’s main landmark, the grand futuristic Hallgrímskirkja cathedral (which looks beautiful at night).

You may have heard that Iceland is expensive – it is. We paid £35 for half a loaf of bread, a small packet of tea bags and 6 bottles of water. But not all the rumours are true. We didn’t find eating out too expensive compared with eating in. The Icelandic cuisine is not as wacky and primitive as you’re led to believe and they don’t actually like eating whale. Eating whale is a tourist tradition and most restaurants in Reykjavik take a stand against whaling by advertising the ‘Meet us don’t eat us’ sticker in their windows.

There is, however, plenty of fish to be had. As a vegetarian this wasn’t for me, but Jonny sampled several different plates and recommends Reykjavik Fish Restaurant as his favourite. He also sampled some of Reykjavik’s famous hot dog stands which were widely recommended to us. He reviews them as ‘excellent, better than Ikea’.

I’d heard that I’d struggle as a vegetarian but that wasn’t the case. Not only do most restaurants in Reykjavik have vegetarian and vegan options but I found them to be absolutely delicious. Whether you’re vegetarian or vegan, I highly recommend trying some Icelandic falafel which is the best I’ve ever tasted. The bar has been set far too high to buy it back home. The falafel in Frederiksen Ale House (extremely warm, comfy and cosy with cheap drinks at happy hour) was my favourite, and after trying it on the first night, I was desperate to go back a second time – so we did. Having got a taste for it straight away, I almost exclusively ate falafel for the duration of our trip.

We spent Saturday browsing the high street and back alleys of the city centre hopping from art shops to second hand shops jam packed with the largest selection of vintage Nordic knitwear I have ever laid eyes on. Our chief concern was music pick-ups because the Reykjavik record shops are a goldmine to get lost in. I was thrilled to pick up both of Mammut’s albums, the day after we’d seen them live, especially after struggling to get my hands on them back home. Jonny picked up some classic Bjork as well as some Fufanu, an Icelandic alt-techno band that we’d discovered at the festival.

Between every side street that separates the city from the sea front, you’ll find a view like this:

Like us, you might find yourself ‘just nipping down’ to have a look and spending an hour enduring a face full of wind whilst attempting to take in the beautiful scenery.

 

Blue Lagoon (day 3)

cof

If you’re heading to Iceland, the Blue Lagoon is an absolute must do. With the exception of the Northern Lights, it might be Iceland’s busiest tourist attraction. We didn’t want to book too much with having the festival to keep us busy, but this was high up on my list. I absolutely love spas and the Blue Lagoon is as good as it gets. It was the first attraction we visited.

We booked our tickets online in advance and we were able pick from two packages – comfort and premium. We picked the comfort package which offered 4 hours in the lagoon, a towel, a free drink in the pool and a silica mask. We paid 6990ISK each which works out just short of £50. For an extra £20, the premium package offers a bath robe (as well as towel), slippers, a free drink in the pool, a table reservation in their restaurant and free sparkling wine when dining. As we weren’t too bothered about dining, the comfort package was enough. Whilst you do get a free towel, I highly recommend taking your own too and leaving it in the changing room. The towels are quite small, and after you’ve hung it up outside (with fifty-odd other towels) and the wind has blown it half way across the lagoon, you’re going to end up going back into the changing room with someone else’s. I was so glad I took my own towel as it would have been a huge infection risk for my tube site.

The day we visited was probably the coldest and windiest day that we were in Iceland. This made for a brave dash from the changing rooms into the pool. However, once you hit the water, the warmth is an instant hit and I was so toasty and relaxed. The lagoon is quite large with seated areas throughout and a lovely little circuit to drift round. Towards the back of the lagoon, there’s a bar and with either package you can have one free drink. We got given bands when we arrived which could be used for our lockers and scanned for our drinks. Despite being in chilly Iceland, we both had a nice cold blue slush which went down well in the heat of the lagoon.

Throughout the pool, there are several generators covered in rock and the closer you get to the generators, the hotter it gets. I’m the sort of person that likes to boil myself like a potato in the bath so I couldn’t help drift towards the seats around the generator, but it was too hot for Jonny. Further towards the front of the lagoon (at the end of our circuit), there’s a hut where we could grab a handful of silica face mask. We were told to leave the mask on for 15 minutes and then rinse it off in the lagoon. My face was so soft afterwards. There’s also a waterfall close to the mask hut which is great for anyone who enjoys a heavy massage, but lovely and relaxing to sit by and listen to.

Whilst we were allowed to stay in the pool for 4 hours, we couldn’t stay in very long as I needed to get back to my feed. However, for me, it was totally worth the money. We really enjoyed our time in the lagoon and it was such a perfect experience. I want to feel so good all over again.

Accessibility information was really difficult to find for the Blue Lagoon. It’s on their web page, but I had to email them to find out. Even after clicking through all the pages and searching the terms ‘accessibility’, ‘disabled’ etc, I still couldn’t find anything. It turns out, provisions are very good and you can find all they have to offer here.

The entrance to the pool is via a wide ramp so easy to get into. As the water is concentrated with silica, it’s very thick and dense so I found it quite difficult to move through. The silica will also leave your hair feeling really thick and stiff afterwards. This is fine (and good!) if you have thin, limp hair like me (I use silica powder on my hair anyway) but might be a nightmare for people with thick or frizzy hair. In the changing room, they have their own special shampoo and conditioner which works an absolute treat for getting it out. It makes your hair feel so nice. I looked at it in the gift shop afterward, but it was a bit too expensive to justify.

Lava Tunnel (day 4)

Whilst I was well aware that Iceland is famous for its volcanoes, the Lava Tunnel was not something I’d heard of. Jonny found this lesser known gem whilst doing a bit of research and we were intrigued so decided to book. Firstly, I should state that this is quite an inaccessible attraction. The tunnel itself is not long and has plenty of opportunities to sit down. The tour guide stops every couple of minutes to give a talk and this is the perfect opportunity to sit down on a rock and catch your breath.

For the first part of the tour, there’s no clear path and it’s almost a rock-climbing expedition. The floor is uneven, and it can be a little slippery in places. Once you’re over the initial mound of rocks, you enter onto a grated platform bridge and the rest is flat and easy to walk on (with the exception of a few steps).

The Lava Tunnel, by nature was a very cold attraction. Before we started the tour we met in the reception hut and we were given a hard hat and head torch to wear and our tour guide ran through some health and safety rules.

The first part of the tunnel was full of rocks and we were given some really interesting talks – if you’re into geology, it’ll be so far up your street. We were told about the different rock in the tunnel and how it was formed by a stream of lava.  This most likely happened around the time of the earth’s creation! The walls in the cave are formed of different colours and textures all as a result of how the lava interacted with the earth and then corroded over the years.

There were holes in the roof of the tunnel to begin with, but as we got further in the tunnel got smaller and we were lit by artificial lights. Near to the end of the tunnel, we reached a viewing platform and we were all asked to take a seat. What happened next was the coolest part of the tour. We were first asked if there was anyone on the tour who didn’t like the dark and after there were no objections, we were told to turn off our head torches and close our eyes. Seconds later, we were asked to open them again and it was pitch black – complete darkness. There was complete silence and our tour guide let us sit for a minute in darkness, listening to the sounds and feeling the atmosphere of the cave. It was amazing. We only walked a little further after this before we reached the end of the tunnel. Our tour guide took pictures of us all at this point and then we were allowed to make our own way back, exploring, touching and taking in the natural aura of the cave.

Whale Watch (day 6)

The whale watch was the last attraction we booked. Going on a whale watch has been so close to the top of my to do list for as long as I can remember. I’ve had a fascination with sea life and the ocean since I was younger (my first experience of campaigning was with Shark Trust when I was 13). I used to fantasise about seeing whales in the wild (in my head, I was always somewhere more exotic). That said, I was reluctant to book because I have terrible sea sickness and I know that Iceland is notorious for windy, choppy waters. However, I would have kicked myself if I’d have gone all the way to Iceland and not done it, so we bit the bullet and I’m so glad we did.

It could have gone either way. A few days prior, someone we met at the festival told us that some trips had been cancelled due to rough waters (this did nothing to easy my concerns).

We were incredibly lucky on our whale watch. Day 6 was the calmest day that we were in Iceland and the waters were so still. I could hardly tell I was on a boat. Not only was the weather kind to us, but so were the whales. We were told that we had about a 60% of seeing ‘something’. This didn’t necessarily mean a whale. It could mean dolphins or puffins or other sea life. On our way back, our tour guide declared that he’d remember our watch for a long time and that it was the most successful one he’d been on. We ended up staying out in the waters for an extra hour, following an enormous pod of dolphins. There were some tourists on our boat that even missed their flight for it!

The boat that we chose to book on (named Andrea) had three decks – two indoor decks (with the middle deck having an onboard café) and a top deck. It was lovely and warm on the middle and lower decks – a nice cosy spot to come inside and warm up with a cup of tea in between lookouts. The top deck was extremely chilly, but also where all the action happened. The guide stood up top and spoke to us through a PA system and we were told to treat the boat like a clock and spread out. If we saw something, we called out the direction on the clock and the guide would announce it so all decks could hear. And we saw a lot. We saw a few puffins, two pods of porpoise, a Minke whale and lastly that huge pod of dolphins. Seeing animals in the wild is incredible and such a different experience to seeing them in an aquarium. After initials gasps of awe and excitement it was so quiet whenever we had a spot. We were absolutely captivated.

The tour lasted approximately five and a half hours and took well over an hour to get back. On our way back to the dock, we gathered in the café and our tour guide gave us some talks about whales, including sharing round some whale parts like jawbones and filter teeth.

We paid approximately £50 each for our whale watch tickets and it was worth every penny. I’m so pleased that I got to do a whale watch and so lucky that we saw so much. Mostly, I’m thankful that I can tick it off my list and that it is memorable for the sea life and not because I spent 6 hours vomiting.

Golden Circle (day 7)

The Golden Circle was Jonny’s choice and was a 6 hour round car journey (including stops) filled with breath-taking natural beauty. By this point of the holiday, I was fully intending on sitting in the car and napping whilst Jonny chauffeured me round like a diva, but the stop-offs were too good to miss. Making the decision to hire a car from the airport when we arrived was worth it for this trip alone. We hired an enormous Dacia Duster that we both had a go at driving throughout our holiday. Jonny offered to do the driving (/hogged the steering wheel) for most of the trip but I’m not complaining. I didn’t envy him the 6-hour Golden Circle journey but apparently, he really enjoyed it!

We only got out the car on 3 of the stops, but drove round the entire circuit. The drive alone is filled with absolutely beautiful scenery. Like most of Iceland, you can barely open your eyes without being hit by an incredible view.

Þingvellir

Þingvellir (pronounced ‘Thing-vil-er in English) is a stunning national park that sits on a valley separated by two tectonic plates. You can access the viewing platforms fairly easily where you can look out over the valley of rocks. From there, you can see the old Þingvellir church – a quaint white monument amongst the golden landscape. If you have a bit more time to spare you can go on a hike through the valley, a history tour or even diving in one of the (beautifully clear) bodies of water. If you can make time and energy for a hike, you can cross the continental divide between Europe and North America.

Gulfoss

Gulfoss was loud, wet, windy, noisy and the coldest temperature I have ever experienced. So cold and wet, it can feel hard to breathe. The size of the waterfall is astounding. From the top, there are three large steps. It is 32metres in height with the largest (final) drop making up 21metres of waterfall. Whilst the waterfall itself is difficult to turn away from, the conditions made it difficult to hang around.

Geysir

It is as cool as the pictures you’ve seen. Geysir is the name of the main eruption site (Great Geysir) and geysers all over the world get their name from it. The Great Geysir erupts sporadically and often stops completely. Strokkur is the name of the geyser that we saw erupt – this erupts every few minutes to a height of about 30 metres, just less than half of the current height of the Great Geysir. We hung about to watch it go off a couple of times and Jonny managed to get this awesome video. His phone added this appropriate music which cannot be removed (but why would we want to?).

 

Well done if you made it to the end! The main reason we went to Iceland was for Iceland Airwaves music festival so I have another blog post on that still to come. Stay tuned for my festival review, which will be posted later this week…

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REVIEW: Teleman and C.A.R at Hangar 34, Liverpool // 05.10.2018

Whatever phase my listening habits are going through, I’m always itching for my next Teleman gig. This was the third time I’ve caught Teleman live, having seen them at two different venues in Liverpool previously – first at The Buyer’s Club and then and Leaf. When Teleman announced their tour earlier in the year, I flicked through to see where they were on at. I hadn’t been to Hangar 34 before and hadn’t heard too much about the venue.

If you’re a regular reader of my blog, you’ll know that I’ve been trying to take a bit of a break from gigging this year, and with it being a venue I hadn’t been to before, I was hesitant, so I laid off buying tickets. I have my trusty favourite venues – like Manchester Academy and Manchester Albert Hall – where I can relax and have a good time without having to worry about accessibility and attitudes towards my disability. There’s no safety net when attending a new venue, so I haven’t been so adventurous with new places this year.

A month or so before, I was having a catch-up with Katie and we were talking about the gigs we’d been to (including, round one and two of Teleman) and by the end of the night, we had tickets for Hangar 34. I was nervous, as I always am when I go to a new venue but looking forward to seeing Teleman again – always a treat.

VENUE AND ACCESS

I put off looking for access info until a week or so before. I always end up putting it off for as long as I can, nervous of what I will find or where it will lead me. However, I was pleased to find some really useful access information on Hangar 34’s webpage. Although it doesn’t have a dedicated page for access, I managed to find the information easily enough by clicking on ‘The Space’ in the drop-down menu, reading about the venue and eventually finding access information at the bottom of the page.

As stated on the website, the venue has level access to the ground floor space. There is also a mezzanine area which can only be accessed via the stairs. The website states that PA tickets can be provided for those who need them, although on this occasion we did not request one as we had already bought our tickets. When it comes to smaller venues, I don’t tend to check for PA tickets or request them. I’ve been so used to small venues not providing PA tickets in the past but it’s so great to see more and more smaller venues offering them to those that need them. It means that more disabled people can support independent venues and see their favourite bands in more intimate settings – perhaps as they start out their career.

Unfortunately, strobing was in full force at Hangar 34 for this gig which was pretty disappointing considering all the other great provisions.

The website provides contact details for anyone wishing to discuss their access requirements in advance, so I sent off a quick email. Within minutes, I had a friendly response from Robin, reassuring me that these would not be a problem and to make myself known on arrival. This can occasionally cause problems for me at gigs because not all staff are aware of a venue’s access provisions and can often have very poor disability awareness, but this was not the case at all at Hangar 34.

All the staff were extremely friendly and made me feel relaxed. Unfortunately, the doors were delayed in opening, meaning we stood (I crouched on the floor) for almost an hour before we were allowed in. This meant I was very cold, sore and ready for a sit down once I got inside. All the staff we spoke to were fantastic. When we arrived, a member of staff grabbed two chairs and asked where we wanted to sit. I asked him where he thought was the best place away from the crowds and he told us to tell him where we wanted to go and he would put a barrier up. He suggested the front so we went with that. For the rest of the night, nothing was too much trouble. The staff member on duty down the front was friendly and checked if everything was ok for us before the gig started. All the staff seemed to know the venue well and had such a great attitude.

I can often feel nervous going to venues I have never been before. Sometimes policies can be in place, but not be implemented and one minute you’re having a good time and the next you’re being harassed. However, we were made to feel so comfortable at Hangar 34 that I could totally relax and enjoy the night.

I absolutely love being in a spot in or so close to the crowd and I was totally immersed in the atmosphere and buzz – it was a perfect position and absolute textbook inclusion. The only downside to being in the position that I was in, was that I couldn’t get through the crowds to go to the toilet, but there is no way around this and I fully enjoyed the gig anyway. As a result, I am unsure if there was an accessible toilet and this information isn’t on their website.

I’m so glad I have found this venue – it might just be my new favourite. I can’t wait to go back for another gig.

SUPPORT – C.A.R

Supporting Teleman, was electronic-one-woman-band C.A.R from France. C.A.R started off pretty slow and we weren’t sure where it was going but after a couple of songs we were fully bought in. A perfect pick for Teleman fans, C.A.R pumped out a collection of alternative synth-pop with both French and English lyrics. C.A.R had a mechanical sound that incorporated so many elements – it was dark yet catchy, tribal yet mordern and 80’s and alternative and so much more. You might have to give her a few listens, but you’ll be glad you did (you’ll find her on Spotify).

HEADLINE – TELEMAN

Teleman’s third album, Family of Aliens had been released only a few weeks before the gig and I’d already decided it was their best yet. The penultimate track, Fun Destruction is without doubt joining my old favourite Mainline up in the favourite spot and I was absolutely ecstatic to hear them open with it, beaming high energy through the room from the get-go.

Teleman continued their set with a europhoric, hypnotic, synth heavy setlist, formed heavily of their new music with old favourites mixed in.

Submarine Life was utterly captivating, and the audience connected through a series of synchronised head bobbing and a few thrown arms of worship. Cactus and Family of Aliens were a fierce order of energetic dancing whilst Starlight brought us down a notch, soothing our fuzzy ears and sweaty brows whilst making us Feel Good™.

Fall in Time was as much appreciated two years down the line as it was the first time I heard it, with ‘can’t afford not to fight’ (i.e the most iconic Teleman lyric in existence) bounding from the lungs of each sweaty dancer to the walls and ceiling and rattling through every atom in the room. The final chorus of Fall in Time will always be the climax of their gigs.

Going out with a bang, Teleman finished with 7 minute long rendition of Not in Control and we never wanted it to end.

As well as Teleman being a great band, their gigs are always such a great experience because they seem to have such a great fan base of friendly music lovers. Teleman are such a wholesome band to enjoy, from their feel good electronic beats to their clean aesthetic and their catchy, floaty (absolutely bloody lovely) lyrics to their seamless stage presence. Teleman are a live music high, and equivalent to a superfood breakfast, a crisp morning walk and good news in the papers. 100% healthy goodness.

After the gig was over, we went to join the queue for merch. I was over the moon to discover that Teleman had brought out another limited-edition tour CD with stamped art. I am absolutely in love with them and couldn’t wait to get my hands on one. I have one from the previous tour and absolutely love everything about it. I’ve listened to them both a fair bit and I’m going to get them framed on my very grown up wall of live music stuff. Three out of four Telemen came out to say hey around the merch stand and they were swamped with fans. Katie managed get through the mob and have my CD signed by Jonny, Hiro and Pete (which I wouldn’t have managed without her!) so I’m really pleased about that – thanks Katie! We couldn’t really stay and wait for Tom to come out and complete the collection because we were knackered but we had such a brilliant night.

I cannot recommend Hangar 34 enough. I’m keeping my eyes peeled for my next event there – watch this space!

To find out more about accessibility in the live music industry or find out what you can do to get involved, visit www.attitudeiseverything.org.uk

 

 

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A secret gig at Victoria Baths, Manchester: Jack Daniel’s Presents The Vaccines for The Music Venues Trust

About a month ago, as I was leaving work a twitter notification popped up on my phone.

The Vaccines: ‘We’re heading to Manchester in September for an intimate gig in a secret location with Jack Daniel’s UK! Proceeds will go to The Music Venues Trust and tickets are on sale now…’

Excitement first, then panic as I fumbled to follow the link, then pause.

Accessibility? Having no venue information at all added a complicated layer to a ticketing process that was stressful enough at the best of times. Who would I even contact?

The ticket vendor was Dice which functions via an app. I like Dice because it makes touting next to impossible. I’ve used it for a few gigs in the past and found it really easy to use.

Instead of ‘purchase tickets’ the app showed ‘join waiting list’. I added two tickets to the waiting list. I wasn’t too bothered about applying for a PA ticket with the proceeds going to the Music Venues Trust. They do great work towards the preservation of the many amazing live music spaces across the country, allowing artists, bands and live music fans like me to carry on having a good time in treasured venues.

In terms of access, I hoped for the best. Manchester has some of the best live music venues for accessibility even in its numerous old and listed buildings. I waited a few days and hoped that some information might be released on the venue so I could gage whether it would be accessible or not. I dug around and couldn’t find much. With nothing to go on, I fired off a message to The Vaccines social media accounts on the off chance someone might see it and be able to give me some information. Unsurprisingly, I was unsuccessful down this route.

I got in contact with Nat from the grassroots project at Attitude is Everything and she managed to find out a little bit of information to let me know that there would be an accessible viewing area but that it would not be raised or closed off and could get busy.

I was pleased to hear that they had some accessibility arrangements in place, but I wasn’t too sure whether it would be suitable for me and my needs. I’m ok with busy. I just need to ensure it’s not too crowded or chaotic so that my tubes don’t get pulled. If I did get tickets, there was a chance that I’d be putting myself at risk if it got busy. With this set to be a small sold out show, it was certainly likely to get busy.

A week went by and after leaving work half an hour late, I noticed that two waves of tickets had gone live and sold out. At this point, I told myself that it was probably for the best. It didn’t sound like the most accessible environment for me from the information that I had.

If it was anyone else besides The Vaccines, I’d have given up.

More time passed. I was at Leeds festival when I got my third notification urging me to be ready on the Dice app at 5pm for the next wave of tickets. Unlikely. I had no internet signal at all at the festival, so I knew that I wasn’t going to be successful in this wave either. Having just had my shirt signed by the band and feeling excited about seeing them in an hour I couldn’t really complain at that moment in time.

When the fourth and final wave went on sale, I was working late once again. I text Megan to tell her that we hadn’t managed to get any tickets. It was disappointing, but I kept telling myself that it wouldn’t have been suitable anyway. I’d tried my best – this was clearly a super intimate show with a very small amount of tickets.

Social media was filled with droves of disappointed fans. I wondered if anyone had managed to get tickets at all. There really must have been only a handful.

Without wanting a pity party I spent Wednesday night and Thursday morning being unwell and had to resort to a double dose of my ‘last resort meds’. I was not in a good way. It was the day of the secret Vaccines gig and even thought to myself ‘it’s a good job I didn’t get tickets!’

By Thursday afternoon, the meds had kicked in and I finally stopped being sick. I was getting through some work in bed whilst attempting to revive myself with fluids and dioralyte running through my tube when a text came through from Dice:

‘Hi Hannah, we’ve reserved you tickets for JACK DANIEL’S PRESENTS: THE VACCINES. We’ll hold your tickets until Thursday 20 September 13.17. Follow this link to purchase…’

Holy crap. Now what?

I’d already told myself I wasn’t going even if I could get tickets. And I was not having a good day. I’d just about managed to crawl downstairs to get my laptop an hour earlier.

But this was the ultimate dream for a Vaccines fan girl. Illness has made me lose out on so much over the years (pity-party round two) and this gig was such a big deal. I knew had to at least try or I would never get over it.

I text Megan to see if she was still free. She was.

That was it, we were going.

Having been ill that morning I had loads of work to catch up on. I spent the afternoon hammering away at my laptop, doing my best to put it to the back of my mind so I could concentrate.

Even with a face full of make-up I looked like death. To match my sick girl look, I opted for a comfy pair of loose jeans and a hoody as opposed to getting myself gig-glam. I just wanted to be there.

Two hours before doors opened the venue was finally announced as the beautiful Victoria Baths. We were so excited! Megan had been to look around the baths before but never to a gig.

Still being shaky and dizzy, I had to hobble on down on my crutches which are reserved for my worst days. Megan was lovely enough to drive, even though it meant missing out on some free drinks when we got there.

The odds really were against us when we hit stand still traffic on the M62 due to an obstruction on the road. We managed to crawl down the first lane, get off at the next junction and take the long way around, making a 25-minute journey well over an hour long. I was panicking (I’m always panicking!). We navigated our way into the city centre and managed to find a car park close by.

Victoria Baths has several 24/7 car parks close by with the closest being St Mary’s Hospital car park and Wilmslow Park car park (both of which have blue badge spaces).

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I was so relieved to arrive. When we got to the door we had our tickets scanned and then went through to bag search. I had to wait for a medic to come down and search my bag (protocol in some places) and then we were able to go through.

We were given a Jack Daniel’s tote bag and pass as well as a free JD bandanna and a handful of food and drink tokens. Megan had one JD (she was driving) and some food from the bar and I had… a bottle of water. All free!

We asked a steward in the corridor if there were any disabled access facilities and for a few minutes we thought we weren’t getting in. My stress levels were rising back up again.

The first steward told us that there was a disabled viewing area but no chairs and that we’d have to sit in the bar if we wanted a seat (which was in a separate room). I was already struggling to stand from the short walk from the car and I was about ready to sit on the floor.

We then spoke to a different member of staff who was incredibly helpful. He got on his radio and asked for a chair to be brought to the disabled access viewing area and walked us over, explaining where all the facilities were on the way.

I was so relieved when the chair arrived, and I could sit down. We were well looked after all night from staff checking in on us, telling us how the night was going to go, how to get out when it ended, and showing me through to the accessible toilet. The stewards were all from Show-sec who seem to be doing better and better with their disabled access awareness.

Once I was sat down and had a great view, I was finally excited and stress free again. It was so worth it all – we had such an amazing night.

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In the run up to the support band the DJ was playing a belting playlist filled with a pile of my favourites from Ramones to Pixies. It was so good to be there at last. I couldn’t quite believe it. The venue was incredible. The standing area was inside the swimming pool itself with the stage being the pool side. The disabled viewing area was on the opposite end of the pool side which left us on the same height as the stage and above the head level of the crowd so that we had a perfect view. The pool area was full once everyone was stood in it and the atmosphere was great.

The support band, Lucia were only announced hours before, so I didn’t have chance to check them out in advance. Lucia are a female-fronted indie-garage band and they sounded sharp in the baths. The venue itself allowed for some beautiful acoustics – absolutely perfect for bands like Lucia and The Vaccines.

The Vaccines arrived on stage at 9.30pm and played an hour long set of soul-lifting rock and roll favourites. They started the set with their heaviest bangers Nightclub from LP4 followed by Wrecking Bar from LP1. From there, they flew into favourites from Come of Age including No Hope, Teenage Icon and I Always Knew followed by a train of Combat Sports anthems which included Take It Easy and our favourite Out on the Street. The classics were not missed and Norgard, 20/20, Post Break-up Sex, and my favourite, Wetsuit were scattered throughout the set. Norgard brought as much possessed chaos to the crowd as it always has done and Wetsuit was as special to me as ever. Megan managed to catch the whole song on film for me and I have not stopped replaying it since.

The Vaccines finished with All In White which we both belted out as we have done a million times before – at gigs, in the car and in our pyjamas on the sofa at uni.

I’m still taking it in. It was the gig I had no intention of going to but somehow, I was there.

It was probably the most memorable gig I’ll ever go to. I can’t imagine anything ever being able to top it.

Thank you, Music Venues Trust for keeping venues like this alive and allowing us to have such special live music experiences. Thanks Victoria Baths for making your venue accessible and inclusive. Thanks Show sec for looking after us and biggest thanks to the Vaccines for putting on the best show of my life!

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A weekend in the City of London / 27th-29th July

It’s been a couple of weeks since Jonny and I went on a short weekend adventure to London. Our main reason for going was for a meeting I had, but we thought we’d make a weekend of it. We headed down on Friday 27th July after work and got a late afternoon train back on Sunday 29th. After a long summer heatwave, it was the weekend the rain came – obviously.

London is quite expensive so I had to weigh up whether I was going to stay the weekend. With the train tickets being costly on their own and the meeting being quite long on Saturday, it made more sense to stay overnight and have a fun weekend in London.

I love London. I’ve been going to London on a regular basis since I was a teenager. Back then it was mostly for medical stuff but I’ve always managed to squeeze something in. There’s always something to do in London. Having such good public transport links means that you can cover a lot of ground in a short space of time and you can make it up as you go.

Last time I went to London for a long pleasure trip, my experience with attractions was pretty up and down but fortunately we had a better experience this time.

We didn’t have a great start to the weekend, with our train being over an hour delayed due to the heat. This left us a bit of time to wander round the apocalyptic streets of Warrington Bank Quay, get a kebab and sit on the platform and read the reviews of the hotel we were staying in.

If you follow me on Instagram, you may have noticed that the reviews fell short of reassuring. They ranged from ‘missing a window pane’ to ‘poo on the shower’ to ‘would rather stay in Auschwitz’.  There were complaints about the steep spiral staircase with no lift and the unbearably hot bedrooms. The room that we’d booked said that we had an ensuite but several reviewers who had expected an ensuite found they had a shared bathroom. Another reviewer said that they didn’t have any plug sockets. This was a big issue for me because I would need to charge my pump.

I was worried. The delayed train made matters worse because it meant that we wouldn’t be arriving in London until gone 11pm which would make finding somewhere else impossible. We passed the time on our extended journey by searching hotel vacancies. Unsurprisingly, most places were booked up at 9.30pm on a Friday night. We even debated ringing round to see if we could secure a room elsewhere and sacking off the hotel we’d booked. In the end, we decided to chance it.

Kings Hotel, 36-37 Argyle Square

The hotel was an 8-minute walk from Euston, or opposite Kings Cross Station. It was in a great location as it was so central. This was one of my reasons for choosing it (it obviously wasn’t the reviews since I didn’t bother to read them!). We paid a little over £80 per night for the hotel which is an absolute bargain in central London so I wasn’t expecting anything fancy. I was just hoping it was safe. When we arrived, we were greeted by a friendly member of staff who gave us our key and directed us to our room.

Up the dreaded staircase we went (which actually wasn’t that bad). We were on the second floor, (which was about enough climbing for me) and in room 34. The room was a small basic twin room. It was exceptionally hot when we arrived, but it had an old slide-up window which opened wide and the room quickly cooled down. We pushed the twin beds together and we both had a double plug socket to the side of our beds (only one worked on Jonny’s side). We had a TV on the wall with a remote and a small ensuite which had a toilet, sink and cubicle shower. In some of the pictures on booking.com, the showers/bathrooms appear to be in the bedroom and not a separate room, but this wasn’t the case for us.

The room was small, basic and a bit shabby (my bed had the knobs missing off the end) but it was clean and smelled fresh. We had duvets and a thin sheet on our bed and one pillow each. The beds were extremely comfortable and we both slept like logs.

We were given a clean towel each day as well as a new bar of soap and a sachet of shampoo. Jonny had a wall lamp next to his bed, but it didn’t work so we just used the TV as a night light. There was WiFi in the hotel, but we didn’t use it so I’m not sure how well it worked.

In terms of access, I had everything I needed with an ensuite and a plug for my pump next to my bed. I may have struggled with another flight of stairs. I can’t imagine this hotel would have any wheelchair accessible rooms due to the size and the stairs would be an issue for many people with mobility impairments.

All in all, it was fine for us. Perhaps the other rooms weren’t as nice as ours or perhaps the other reviewers were being a bit harsh. For a hotel in central London at such a low price, I was pleased with it.

Would I stay there again? Probably.

We got into bed as soon as we got there as we were pretty tired and I had to be up fairly early the next day for the meeting.

Cappadocia, 293 Grays Inn Road

After we were up and showered (little more than a dribble), we searched for some local café’s for breakfast and decided to go for Cappadocia, based on the pancake-porn uploaded to trip advisor. It advertises ‘vegetarian, vegan and gluten free options’ which sealed the deal.

As the sun was still holding on, we opted for an outside seat. I ordered an orange juice, tea with soya and a round of toast and Jonny ordered the eggs, bacon and pancakes with orange juice.

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The food and drinks were good, service was a bit chaotic and slow and they didn’t take card. There was a cash machine on the road opposite, but it was out of order, and I had a rough time finding another one (it wasn’t nearby!). This put us behind schedule a bit and left me in a bit of a rush when we got back to the hotel room. Food – good, service – not so great.

I may or may not have mentioned that I was accepted to to join Attitude is Everything’s board of trustees a couple of months ago. The first board meeting came less than a week after I was asked to join which meant that I only had enough time to Skype into my first meeting. This time I was down in London for my first away day with the other trustees. I had a great day – it was really interesting and exciting to be a part of conversations with other people who are equally as passionate about accessibility in the live music industry. The meeting went on for most of the day and was followed by a few drinks in the sunshine outside a local pub.

After I was finished there, I headed off to meet Jonny and Sean in Hyde Park and from there onto Soho for a few drinks. We decided to walk back to the hotel because I was so done with all the steps in the tube stations. I find it easier to walk a longer distance on the flat and find steps a bit of a pain. It was quite busy which can cause extra problems with my bag and feeding tube in the confines of a tube train. We stopped a few times on the way – once to pick up a pizza (from Franco Manca in Bloomsbury – highly recommend!) and once to grab some drinks.

Jonny wasn’t ready for heading back to the ‘manky hotel’ but I was shattered and needed my bed so back we went. After eating his pizza Jonny was out like a light and we both had our heads down for 10pm. Party animals.

We hadn’t been given a check out time and took advantage of that with a lie in the next day. Once we’d checked out, we dropped our bags off at the luggage hold in Euston Station and then went for some breakfast at Café Ritazza. I ordered a decaf caramel macchiato and after raving about how amazing it tasted for a decaf, I soon found out that it wasn’t a decaf. I’m not very tolerant of caffeine; I can manage it in tea but in coffee or energy drinks it makes me feel really dizzy and sick.

The Wellcome Collection, 183 Euston Road

The Wellcome Museum has been on my list for the longest time but this is the first time I’ve managed to check it out. If you’re in the health field, have an interest in health or have morbid curiosities for weird stuff, this is for you. The museum is right opposite Euston Station, so it’s a great way to pass the time if you’re waiting for a train.

For morbid curiosities head to the ‘Medicine Man’ exhibition which features an excellent haul of Henry Wellcome’s weird and wonderful objects. One of my favourites from this permanent exhibition was the Sri Lankan health masks (or ‘disease demons’), believed to cure sickness in ancient times. You’ll also find Napoleon’s toothbrush, an uncovered mummy (not for the easily spooked) and some shrunken heads.

 

 

 

We checked out the ‘Teeth’ exhibition which lasts until mid-September, the permanent ‘Medicine Now’ exhibition which had an interesting feature on diet and obesity, the library and the restaurant.

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There are two restaurants in the museum and we went to the slightly fancier (and quieter) restaurant on the first floor. Jonny treated himself to some swordfish and we both had some fancy lemonade.

I’m keen to go back again for another look at the Wellcome. It’s easily my new favourite museum in London.

Accessibility was great with level access to the building, lifts to all floors and level access to all the exhibits. There were audio guides in every room, as well as large print pull-outs within the exhibits.

The Thames

From there, we caught the tube from Euston to London Bridge and went for a walk along the Thames. It had been raining pretty heavy throughout the morning but it had slowed down to a drizzle by lunchtime so we were able to snap a few pictures along the river.

 

The Golden Hinde

We stumbled across the Golden Hind Ship on our walk and we were intrigued enough to pay £5 each to have a look inside. When we got in, there seemed to be some live dramatic re-enactment going on for an audience of small children. It was fairly cramped and involved a lot of crouching or crawling, which made avoiding the children’s entertainment quite awkward (and terrifying) at times but it was good fun for a fiver. The boat was very tactile with no areas closed off. You could aim a cannon, poke your head out of the windows, sit in the captain’s quarters and even take the helm.

 

It was completely inaccessible for wheelchair users and generally not very accessible due to the nature of it. We were asked to go down all the steps backwards and treat them like ladders for safety reasons and there was a lot of crouching involved. That said it was very small which meant there wasn’t too much distance to cover. Great for history lovers and great for children who want to climb about and touch things.

From there, we headed back to the station and that was the end of our weekend in London. Fortunately, our train back home was smoother than the one out and I was totally ready for my bed when I got in.

I have two more trips to London in the next few months – for hospital and charity things. If you have any recommendations I’d love to hear them. Tell me what you like to do in London?

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Home Artificial Nutrition Week – Q & A

This week is HAN Awareness week. HAN stands for Home Artificial nutrition. This can come in many forms. Some people are artificially fed through feeding tubes, some through a central line in their arm or chest and some will drink their special formula . There are many reasons why people may rely on artificial nutrition – far too many to list here. For HAN Awareness Week, I decided to reach out to my friends and followers for a Q & A. Thanks so much to everyone who asked me questions – I hope it helps you learn something new about artificial nutrition and tube feeding.

What age were you diagnosed and treated with a feeding tube?

I was first diagnosed with problems with my digestive system when I was very young, but as a baby and child we were always told that I would grow out of them. When I was a baby I didn’t hold milk down and had such severe reflux that I couldn’t be led down. My parents will tell you I was always a nightmare eater when I was a child – never hungry and always with sickness or stomach pain. I labelled as a ‘sickly child’ and then when I was 6 or 7 it was diagnosed as being psychological. When I was a teenager, things got a lot worse and I was diagnosed with inflammation and dysmotility (a problem with movement in the digestive system). I had my feeding tube put in when I was 19 (2011) but didn’t get my formal diagnosis of enteric neuropathy until I was 21 (2013) after I had a small bowel manometry test in London.

A small version of me – about 9 months old

 

Is the tube always feeding you or do you choose when it is released?

My tube is attached to a pump in my backpack. The pump is set at a rate which controls how much I feed in an hour. I am in control of the rate and I can turn it up and down depending on how I’m feeling. My rates vary from 30mls in an hour to 60mls in an hour. If I’m feeling well, with little pain, I run it on a higher rate. I turn it down if I’m sick or in pain as that usually means my gut is struggling to cope with the amount that’s going in. I have to turn it down at night as if I run it too fast while I’m sleeping it makes me sick.

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This is what the inside of my backpack looks like. The bottle hangs and the giving set (the tube part that you can see) is clipped into the pump. It’s running at a rate of 50mls an hour here.

 

Is it a constant thing that you have on 24/7?

Yes – I’ve been on a 24 hour feed since 2014. When I first started on a feed, I had it on for 10 hours overnight. I was able to run it at a faster rate which meant that I could get everything I needed in 10 hours. But eventually it started giving me severe pain and I wasn’t keeping it down. I lost a lot of weight and my stomach was so swollen because I wasn’t coping with the amount going in. I was admitted to hospital where I tried to build it back up again but the only way I could manage everything I needed was to run it slower for a longer period of time. As time went on this just got slower and slower and now I can only maintain it slowly over 24 hours. I was assessed for TPN (IV nutrition) in 2015 because if I had to reduce it any further, I wouldn’t be getting enough nutrition. Fortunately, I have managed to maintain it on a steady rate since then (with the exception of a few blips). I take it off occasionally for very short periods (usually no longer than an hour) and I take it off to have a shower.

 

Do you still feel hungry even when you’ve had ‘food’ through your tube?

I don’t really ever feel hungry because of how my digestive system works but sometimes I get cravings for things, usually salty food. Because I feel sick when I eat, I’m put off feeling hungry. People have feeding tubes for different reasons, so everyone will answer this question different depending on the condition of their digestive system and the reason for them needing artificial nutrition.

 

How often do you have to attach it?

I change it every day. A bottle of feed has a life of 20-24 hours once it’s been opened and it usually takes 24 hours for me to get through a bottle (one bottle = everything I need in a day). I try and time changes for morning or evening so I’m not doing it whilst I’m out. Once I’ve hooked it up, I just leave it running for the day and don’t detach and reattach until the bottle is empty, or 24 hours is up.

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The yellow coloured tube clips into my jejunum port – this feeds me into my small bowel. The clear tube is my gastric drain which helps prevent me from being sick by allowing me to drain or vent my stomach. It’s attached to a syringe here, which is one of the methods I use for venting excess air from my stomach.

 

How often do you get your feed supply delivered?

It gets delivered once a month. Behind the scenes, my GP and dietician send a prescription over to Abbott Nutrition who supply my feed and all the equipment I need. Then I ring them up and request a delivery. It’s up to me when I get my delivery. I tend to leave it as late as possible because there’s so much stuff it’s difficult to store so I wait until I’ve used up as much as possible before arranging my delivery.

 

Do you always feel full?

Yes! This is largely due to my condition and being unable to digest things very quickly at all. I’ve often said I feel like foie gras with feeling constantly full but also being constantly fed. Imagine feeling like you’ve just eaten a stodgy four course meal and having to keep on eating.

 

Do you miss the food you used to eat?

I’ve always had a bit of a bad relationship with food as it’s makes me ill. With the exception of when I was on steroids (and really enjoyed absolutely everything!), I’ve never really enjoyed food so don’t really miss it.

 

Do you/can you eat ‘regular’ food? If so how much and what sort of food do you like to eat?

Yes – I can eat as much as I can manage which is usually very little. I like to eat salty food and I also try and stick to things that can be chewed down easily, or soft/liquid food. My eating habits can best be described as grazing. My diet is 90% crisps but I also like soft fruit, some types of biscuits, chips, and rice.

 

Was it difficult to adjust to having a feed?

I didn’t find it a difficult adjustment to have my feed as it made my life so much better. Before I had it I was so poorly, I wasn’t getting any nutrition, I was being sick all the time, had no energy and I wasn’t in a very good way. The feed gave me the nutrition my body was desperate for and made me well, so physically it was a positive adjustment.

Probably the most difficult thing to adjust to was remembering all the things that I had to do, like flushing the tube, setting the correct rate and also remembering that I’m attached to it! If I don’t flush it, it blocks. On day two of coming home I was doing some homework when I was due a flush. I left it ‘just a minute’ and it blocked. Subsequently I had to go back in hospital for a new tube.

The first tube I had put in was a nasojejunal tube which went in through my nose and stuck to my face so obviously impacted on my appearance. I stopped doing a few things like going to groups which I usually went to because it made me a bit self-conscious but once I had my surgical tube put in I felt pretty much the same.

 

What do you find most difficult about tube feeding?

People’s attitudes. Others not understanding my limitations and the implications. People feeling sorry for me.

 

What is the main thing that you wish people knew about your tube/feed?

I just wish they knew about it. I wish that more people understood what artificial feeding was. When we see a wheelchair, we know what it is and what it does. We don’t necessarily know why a person might use one but we understand what it does and we understand the limitations. That’s very similar to people with a feeding tube. People with feeding tubes have them for different reasons but they all do the same thing and they all have similar limitations. I understand that most people don’t see a feeding tube every day, but they are more common than you might think – hidden under clothes or tucked away in backpacks. It would be great if when people noticed it they knew what it was. I wish that when people see my tube they know that it feeds me and that it’s good. It makes me healthy and well. It also means that I have limitations – it’s delicate and vulnerable. It’s my lifeline and it’s very important that I protect it. That’s why feeding tube education and awareness is so important!

I don’t really like advertising my feed but have had to in the past so that people understand the importance of it.

What advice do you have for people who are new to having a feeding tube?

  1. You can do this!
  2. If you can make a piece of toast, then you can set up your feed.
  3. Try not to worry what other people think – most people won’t even notice it.
  4. Remember that your feeding tube is delivering goodness to you.
  5. It’s ok to ask questions and it’s ok to make mistakes and do things wrong (you learn to be a pro this way!).
  6. Always have a clean set of clothes close by.
  7. Try and remember that it’s there!
  8. You always know best – don’t let anyone tell you otherwise.