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.

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didnt get glasto tix but i did get 6minutes and 11seconds of @teleman smashing out i'm not in control the other night which accurately encompasses me battling a sea of error messages, meeting the payment screen before being told they're sold out. anyway, teleman were good.

A post shared by hannah mckearnen (@buggalugs_) on Oct 7, 2018 at 3:05am PDT

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).

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.

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!

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 27^th July after work and got a late afternoon train back on Sunday 29^th. 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.

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.

 

 

 

mde

mde

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.

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.

 

cof

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?

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.

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.

I spent 6 weeks in Salford Royal having my gut function and nutritional status assessed. (img description: two brown double doors. above the doors reads ‘Intestinal Failure Unit’ on the wall next to the doors reads ‘Ward H8’)

This was my board on the intestinal failure unit – most of my dissertation was written here! (img description: my hospital board with my name on and the words ‘what’s important to me…. completing uni, feeling better’

 

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.

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.

My nasojejunal tube was much more obvious. These tubes are temporary but much less discrete and need to be changed quite often. They get in the way a bit.

My best friend Becs and I, Christmas 2011

 

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.

Octreotide: An update on my new treatment

It’s been 2 years since one of my consultants first mentioned a trial of Octreotide and I finally gave myself the first dose in April. I’ve tried a lot of drugs over the years all with very limited success. My condition, enteric neuropathy (secondary to my Ehlers Danlos Syndrome), currently has very few treatment options available. First line treatment for enteric neuropathy and other motility disorders (conditions that affect movement through the gastrointestinal tract) are called motility drugs and include Domperidone (Motilium), Metochlopromide (Reglan), an antibiotic called Erythromycin and a fairly new drug called Linaclotide (Linzess). These drugs increase the nerve and/or muscle function in the digestive system but have very limited effect in people with enteric neuropathy or other more severe forms of dysmotility.

For me, the aims of treatment are to maintain weight and nutrition through enteral feeding, and to manage my symptoms with painkillers and anti-sickness medication. I have a couple of drugs that help me manage my symptoms but for the most part, I’ve not had much luck with drugs. Most of them have had adverse effects on me and so I’m rather reluctant to try new ones. I’ve tried several different drugs that target nerve pain in the gut such as Gabapentin, Pregabalin, Quetiapine, and (the very worst) Duloxetine. At best, these drugs were unpleasant and at worst they were unbearable. Unfortunately, none worked for my symptoms. I found the ‘nothing to lose’ mentality wasn’t all that. I had to work myself up to take anything new because I dreaded what it would do to me. After trying Duloxetine, I decided I didn’t want to try any new drugs as for me, the almost definite chance of terrible side-effects outweighed the very small chance of them helping.

I’m fortunate that I have a good team of health care professionals who have always been very honest with me about available treatments (or lack of) and the fact that they just don’t know. They’ve always discussed any ideas they’ve had with me and without judgement they have allowed me to make my own decisions around any treatments or tests that I’ve been offered. When I told them that I was sick of trying new drugs they continued to support me. I often worry that if, by saying no to something (even when there’s very little chance of it working) I’d be labelled as ‘not wanting to help myself’ but there has never been any of that.

WARNING: JARGON (which I will very badly attempt to explain)

Two years ago, at my first follow-up after leaving Salford Royal Intestinal Failure Unit, a new consultant mentioned the possibility of a drug called Octreotide. He said that unlike working on the nerves or pain centres, it worked on the Migrating Motor Complex (MMC) Phase 3 (as I understand, the movements that your digestive system makes when it is in a fasting state) and that my test results show my gut to have especially poor function in this state. It wasn’t a painkiller and it didn’t touch the nerves. It blocked intestinal secretions and tampered with the hormones within the gut. He told me that there were not many people who had tried it for my condition and so he wasn’t sure on what results I would get.

It had been trialled in diabetics with associated gastrointestinal failure and this had shown promising results. The drug itself is not new and is commonly used to treat gastrointestinal tumours as well as growth hormone disorders and some types of brain tumour. The downside would be that it could affect my already low blood pressure and heart rate, and this would be a risk. I said that I would like to have a think about it. I was more open to trying it as it didn’t work in the same way as any of the other drugs that I had tried (and had horrible reactions to). He printed me out the study of the trial in diabetic patients and told me to have a read through it. I read through it and highlighted the issues raised around blood pressure and we discussed it next time I saw him. He said that if I were to try it, I would start it in hospital to ensure that it was safe and so I decided to proceed.

Unfortunately, it was not a case of him just writing me a prescription and taking the medication. As it wasn’t a drug signed off for use in my condition and as it wasn’t cheap, I’d have to go through a funding panel. The first stage was my consultant putting my case to a panel at Salford Royal to ensure suitability. As the drug can affect your liver, I had to have some tests beforehand to ensure that I was healthy enough to start it. Once these test results came back, my consultant wrote to the funding board – to pass the first round they needed to know that I was fit enough to try it, had a severe case of gastrointestinal dysmotility and that I had tried other treatments to control it. It passed the first funding panel fairly quickly and then it had to go to a second funding panel at my local commissioning group who had to agree to fund it. The whole process from having suitability tests to receiving funding, administration, and getting a date to start it took 2 years!

Prior to starting the drug, (since about January), I’d been in a pretty bad way with my blood pressure. With this in mind, I wasn’t in the best state to be starting a drug that was going to hit my blood pressure hard, but I was starting it in hospital and hoped that if it worked, I’d tolerate more fluids and this would combat the low blood pressure. I discussed this with my consultant at my appointment before starting it and she agreed.

It was the day after my wild night seeing the Vaccines at Manchester Academy, so I was pretty tired and I was also in the middle of a flare-up. If I’d tried to arrange a date outside of a flare-up, I’d probably never get the opportunity to start it. I was admitted to the day case ward where I would take my first dose of the injection and be monitored for the next four hours. The drug is a short acting drug and I would need to take it three times a day to keep it in my system. It comes in a pre-filled syringe which I give to myself subcutaneously (into fatty tissue). I’m already a dab-hand at injections as I’ve been doing various intramuscular (into the muscle) anti-sickness meds since I was 14. This is the first time I’ve done sub-cut but I found it isn’t really any different to intramuscular.

The nurse on the day ward asked me if I wanted her to do my first one so she could show me or if I wanted to do it myself and she watch. I chose the latter. I was pretty stressed out about it because I know the effects of a subcut injection happen pretty quickly, and despite this being ‘not like the other drugs’ I was still dreading adverse reactions. When the nurse took my blood pressure before I’d given myself the first dose, it sat at 92 systolic (low but normal for me) and afterwards it shot up to 108 (normal and very good for me!). This was good news, but I was also aware that I was really stressed about having a bad reaction so the increase in my blood pressure was probably due to that.

As my observations were all very good, I was allowed to go home and I collected my injections from the pharmacy. The pharmacist told me that I had been prescribed three injections a day but to start on two until I was use to the side effects and if I was having a good response to two I could stay at that, but if I hadn’t seen any positive response (in terms of my intestinal function) then up them to three a day.

Unfortunately, this time round I did not have a good response and when I got home I was comatose. I took a dose the next morning but had to call in sick. I struggled just moving about the house, felt extremely breathless whenever I did  move, my pulse rate felt as if it was barely there and for the first hour or so after taking the injection I felt so vacant I couldn’t process anyone talking to me. It was so weird. It wasn’t painful or unbearable like drugs that I’ve tried in the past, I just felt disorientated and ‘barely there’. I took my first dose at the hospital on the Tuesday and managed to carry on taking two doses a day until Thursday. I took my last dose on Thursday evening and then woke up in a hot sweat and threw up on Friday morning so decided to stop taking it. I took Wednesday off work (the day after the hospital) but went back into work on Thursday barely functioning. Despite taking my last dose on the Thursday night, come Friday morning I couldn’t even walk in a straight line. The worst part for me was the worry that I live on my own and I worried that my blood pressure and heart rate could be dangerously low. If something did happen to me after taking the injections, nobody would know.

It was frustrating because I found nobody that had been in my position. I posted on a couple of Ehlers Danlos Syndrome forums and had no response. I posted on the PORT charity forum and found a couple of people who had taken it short-term but they were already so much more poorly than me and couldn’t compare symptoms. What would have been so helpful would have been to speak to someone who had been there before to ask them if this was ‘normal’ – would it pass? Should I introduce a third injection? How long should I give it? I even asked the nurses on the ward if anyone else had taken Octreotide and they’d told me that they often have people starting it on the day unit, but nobody with the same condition as me. I really wanted it to work. After waiting two years, I’d pinned more hope on it than I had with anything else. And they’d given me the entire three months supply, filling my fridge to the brim, looking at me every time I went to get the milk for a brew.

I saw my consultant a few weeks later and told her about my symptoms. She agreed that I was right to stop them and that I could discontinue them if I wanted to. But I didn’t feel as if three days on two thirds of a dose was really enough to know whether they would work or not and I wanted to try them again. She suggested taking some time off work so that I could rest and take them so I said I would think about that. I had a load of work on so I needed to get through the next few weeks before I could think about taking any time off.

Another couple of weeks went by and my annual cardiology appointment came round. I told my cardiologist that I’d been struggling with my blood pressure again, and then I had started the Octreotide which made everything worse. She suggested trying medication for my blood pressure again (which hadn’t been successful in the past) and that I shouldn’t start the Octreotide again until my blood pressure and heart were back to ‘normal’.

I started on Midodrine straight away and within a week I felt better than I had in months. To check it wasn’t just a ‘good patch’ I borrowed a blood pressure monitor and actually got good readings. I didn’t want to count my chickens before they’d hatched so I left it another couple of weeks and then when bank holiday came around, I considered this my ‘time off work’ and decided to try my Octreotide again.

Fortunately, this time it went much better. On the Saturday I started on two injections and tolerated them well. On the Sunday, I took two injections again. I started having bad stomach cramps on the Sunday and didn’t know whether these were related to the injections or not and then on the Monday I added the third in.

Since then, I’ve tolerated the Octreotide fairly well. I still get a little bit of dizziness and a ‘fuzzy head’ but nothing compared to the first time round. For the first week I had stomach cramps for around half an hour after taking a dose but then it would ease. My vomiting got better at first but I get a mild grumbling travel sick type feeling which seems to be a side effect and worse around each dose. I started tolerating my feed really well, even my night rates went up but they seem to be dipping a bit now. I got my feed up to a record rate last Tuesday and decided to take it off for a short gig (I know!) and then run it faster again to ‘make up the time’ – unfortunately, I woke up at 4am with violent vomiting and pain. I’ve not really got back to where I was since then. I’m not sure if I pushed it too far with my feed or if I’ve just been through a good patch and now it’s over.

I’ve been taking Octreotide for just over two weeks so it’s still early days. Whilst I’m tolerating them well, I’m still on the fence as to whether it’s improving things for me or not. I genuinely felt as if it was helping at first, but the last five or so days haven’t been as great.

I wanted to document this in a blog, in the hope that if anyone else was offered an Octreotide trial for a motility disorder they might find it useful. I trawled through google and found absolutely nothing useful at all. I think it’s still in the early days of being offered as a motility drug, but if it gets offered more, I hope this blog will be useful to someone. It would have been great for me to read about someone else’s experience before I started. I’ll probably do another update at some point but this is where I am up to now! If anyone is looking at starting this drug, please do feel free to drop me an email on h.mckearnen@live.co.uk

Thank you to everyone who has asked how I’m doing on it both this time and last time – I appreciate it!

The Disabled Blogger Tag

Thank you to Elin (My Blurred World) for creating this excellent tag – it’s the first time I’ve done a tagged post. I was tagged to do the Disabled Blogger Tag by two of my very favourites – Holly (Life of a Blind Girl) and Emma (Simply Emma). I think I got way deeper in this tag than I ever intended but here are my answers!

When and why did you start you blog?

Buckle up, I’m going to take you back to when I first started blogging:

Blog v1: I started my first blog on Live Journal (is that still a thing?) when I was about 14 (2006/2007). It was essentially a constant stream of my profession of love for whichever punk-pop or indie musicians I fancied along with some really cringey amateur graphics that I made on paint. The account was private and my follow community was a mix of web forum fan friends and chronic illness bloggers. I think I referenced my illness a little, but not that much. I spent all of my time in bed at this time and so I remember making lists of ‘things to do’ which I planned to complete when I was well enough. It included things ranging from learning to walk again, going to a football match, doing stuff with my mates, going to festivals, finishing school/getting GCSEs as well as sky diving and swimming with sharks. Why did I start this blog? Because Live Journal was ‘cool’.

The sort of quality content that you may have found on my 2006/2007 Live Journal blog.

Blog v2: Once I started ‘getting better’ I started another blog on Blogspot. It was a diary style blog inspired by a favourite blogger and now friend, Becky, who wrote (and still writes) about day-to-day life with her two kids with CF. It turns out my life was actually quite boring and the blog mostly consisted of ‘had a bath today and used some strawberry moisturiser which was delicious’ but I also remember taking my first steps at physio and documenting it on this blog as well as going to the aquarium (another item from my Live Journal list) and attending my first gig since I’d been unwell, with Laura and Amy. I was about 16/17 when I wrote blog v2.

Blog v3: I wrote a blog for one month during EDS awareness month back in 2014. My life was very different back then; I was in my first year of university and relatively ‘well’. I wrote about various aspects of my EDS for this one-month blog and never planned to do any more blogging after this. It was probably my most successful blog, receiving more hits in 1 month than my current blog does in an entire year. I had lots of strangers contact me through this blog, including several very young people with EDS and other disabilities, as I’d talked about my life as a child and my illness through my teenage years. It was quite scary as I hadn’t talked publicly about my illness for years and many people weren’t aware of my disability or health challenges.

Blog v4: My current blog! I started this blog later in 2014 as lots of people encouraged me to carry on blogging after my EDS awareness month blog. Unlike the EDS awareness month blog, the intention never was (and still isn’t) to be entirely focused on my illness. It started off on Blogspot as ‘How to be a Zebra’ and then I moved over to WordPress in 2016 and became ‘Cool Breeze and Dirty Knees’ – which was only ever a working title and is still there two years later!

Did you intend to talk about your disability from the beginning?

Obviously with a title like ‘How to be a Zebra’ I wasn’t hiding the fact that I had a disability (people with EDS and other rare conditions are often referred to as ‘zebras’) however I was in a very different frame of mind when I started this blog and was also in much better health than I am now. I struggled with accepting my disability and talking about it in front of people and so I struggled writing blogs where I talked directly about my disability. Blogging certainly helped me (and is still helping me) overcome that. When I started, I had a bit of a bad attitude and I thought doing loads of things that were physically demanding and not expected of a disabled person made me tough and somehow less disabled (reference: my first festival where I stood in a queue for 2 hours, left my feed in the tent to curdle and had to be half-carried back to the tent by my mates). So I used my blog to talk about all of the things that I did ‘despite my disability’. I suppose I thought I was challenging perceptions, but I wasn’t. It was more like I didn’t want people to think my disability made me vulnerable and that somehow by doing these things I was a hero.

Squashed in some tight crowd at V Festival in 2015. Not a pleasant experience but at least we’re all smiling!

I was quite poorly towards the end of 2015 and spent 6 weeks in Salford Royal Intestinal Failure Unit. I think this was a break-through in talking about my disability. I blogged about some of my worst days whilst I was in there and I was really nervous about posting them but found that it wasn’t so bad to do so and everyone was actually really nice and I don’t think anyone thought any less or different of me. It made me realise how much I struggled with accepting my illness and I started counselling whilst I was in there (something which I’ve never talked about before) and continued to have counselling for a year. This helped massively and whilst it’s still something I struggle with (and probably always will) it’s helped me talk more comfortably about my disability and I’ve become more open on my blog. I feel that talking about my disability in relation to live music really helped me see how much accepting help was still doing something ‘despite my disability’ and so I started talking about it more and more on my blog. Talking about my disability on my blog has been a double-edged sword at times as not everyone is kind. I’ve started to see that kind of negativity as necessary to help me overcome the issues that I have, which makes me more determined to keep talking about it on my blog.

In short – I never intended to talk so much about my disability because I didn’t see myself as disabled, but now I have every intention of my disability being a big part of my blog and see it as a positive thing.

Have you ever been sceptical about talking about your disability online?

As I said above, not everyone is kind and I did worry about how I would be perceived. Talking about my disability publicly can still be a struggle but it’s helped me to overcome so much. I’ve found posts relating to my disability to be more popular with readers; I suppose because people are interested in differences, but I try to make sure I open up at my own pace and never want to write a post about my disability just because I know it will get me more hits. I haven’t had a great deal of negativity or trolling, just one or two. The positive reactions by far outweigh the negative and I decided when I started the blog that I would try and stay true and talk about what matters most to me regardless of what others do or don’t want to hear. I think my blog is as much for me as it is for other people. I enjoy writing it, it challenges me, and that’s what matters.

Do you write/talk about other topics apart from your disability?

Yes! Though I suppose many things still have a connection with disability or accessibility in some way. I recently wrote my first music review and that had nothing to do with disability and last year I completed the Happiness Project – some themes related to my life and disability but much of it was unrelated. I like to think the focus of my blog is not disability related but my disability adds an extra element to the topics.

What steps do you take to make sure your blog is accessible to yourself as well as to other people?

Probably the most active step I take to make my blog accessible is image descriptions and captioning. Additionally, I try to add plenty of images to create a ‘story in pictures’ element to my blog for people who cannot read large portions of text. I try and use language that is easy to understand as much as possible, avoid jargon and I try to stick to a simple and clean layout.

When I do an access review I try and include accessibility elements that relate to other impairments as well as my own – for example I’ll look out for step free access, sign interpretation and hearing loops, and take note of how big the accessible toilet is. I appreciate that I cannot give an honest opinion of how accessible a place or an event is for a person with a different type of impairment to my own but I try and put as much information as I can in about all types of accessible measures to try and make it as useful as possible to my disabled audience.

What are your three top disability related blog posts that you’ve ever published?

• Review: The Vaccines and Dream Wife @ Manchester Academy
• REVIEW: Teleman at Leaf on Bold Street // 22.10.2016
• A guide to surviving and advocating accessibility change: My 6 top tips

These are all really good posts for me to read back when I’m having a bad day or feeling like the world is a twat.

Do you think the disabled blogger/YouTube community is overlooked?

In some ways yes. I think that abled people like to read the most shocking posts about disability and often switch off when posts from disabled people are too ‘normal’ which can make it quite an internal community. It means that regular followers of disabled people are often disabled people themselves and I feel that abled people will only tune in to one or two posts. This is the reason why I try not to write too much about my disability and try and tie it in with topics relating to my whole-self. I know that I get more hits when I write my most disability focused posts and I don’t want to be purely a disability or an object of curiosity for the abled community. I want bloggers and readers from the abled community to see disabled people as equal and have a respectful acceptance of our differences rather than just morbid curiosity for our conditions or to satisfy ‘inspiration porn’.

Do you find it difficult to think of new disability-related content to publish?

I tend to just write about what I’m interested in rather than looking to post something ‘disability-related’. I don’t find it difficult to think of things as it tends to be whatever is going on in my life at the time of posting. Sometimes if there’s not much going on in my life I struggle to materialise decent content and sometimes I don’t want to post about what’s going on in my life because it doesn’t fit in with my vision for my blog. Occasionally, I’m so busy doing loads of things that I’d love to blog about but I’m just too busy to blog about them!

Do you think blogging about your disability helps to change people’s perceptions?

I hope so! Following so many fantastic disabled bloggers has certainly educated me an awful lot about disability. And it’s helped me learn a lot about myself and my own disability too. Blogging is such a great platform for connecting with people and it’s such an accessible way to connect with people that you’d otherwise struggle to learn about and connect with. All the potential is there and there are so many really interesting disabled bloggers who are great writers and lead such exciting lives. F O L L O W   T H E M!

Who do you tag?

I tag: Rosie Heaton, Jenny Cole, Chloe Tear and Naomi Gilchrist – looking foward to reading your answers, guys!

Review: The Vaccines and Dream Wife @ Manchester Academy

I had planned to do one big review of the twice-in-a-week Vaccines and Dream Wife experience. But since the nights were so drastically different, that won’t happen. It seems like the fucking terrible experience that I had at Alexandra Palace has overshadowed the belting night that I had at Manchester Academy and I don’t want that to be the case. As bad as Alexandra Palace was, Manchester Academy equalled it in brilliance.

This is the fourth gig that I’ve been to at Manchester Academy in the last couple of years and they’ve all been superb in terms of access. I can’t fault them.

Manchester Academy comprises four venues – Academy 1, Academy 2, Academy 3 and Academy Club. The first gig I attended at Manchester Academy was Kip Moore back in early 2016, followed by Glass Animals later that year. Both these events were held in Academy 3, where the accessible area is a cordoned off space to the right of the stage, immediately on the front barrier. It’s perhaps one of the most immersive and inclusive accessible spaces as disabled customers can stand safely in the crowd, side-by-side with passionate fellow live-music fans.

Late last year, I saw Sundara Karma in a sold-out Academy 1 and this is also where I saw The Vaccines and Dream Wife last week. With Academy 1 being the largest venue, disabled customers are given priority to the balcony area which has it all, including a lift, its own bar, and an accessible toilet.

From buying tickets right through to enjoying the gig on the night, access is absolutely seamless.

Buying tickets

As you may have heard, I didn’t have the easiest time buying pre-sale tickets for the Vaccines tour. Despite buying a £50 album bundle to generate my pre-sale code, accessible tickets were not released in pre-sale for Alexandra Palace. I phoned Ally Pally to ask them if I could buy a general sales ticket and have my access requirements met, but their answer was no. You can read more about my thoughts on accessible tickets here.

Manchester Academy over-ride pre-sale access blunders by allowing everyone to buy tickets through the same medium and meeting access requirements regardless. This worked out great and allowed me to use my pre-sale code to buy tickets to the (very quickly sold out) Manchester date. I was so excited.

At Manchester Academy, disabled customers can purchase their ticket through whichever ticketing vendor they prefer. All pre-sale tickets for The Vaccines tour went through Ticket Web so I had to buy from them this time. Once I’d bought my ticket, all I had to do was send the ticket reference over via email to Manchester Academy and they would be ready to meet my access requirements on the night. They ask disabled customers to fill in a form every 3 years and send over proof of disability. This is kept on file and when I send an access request over, they can check my form to find out my requirements and then put my name on an access list which is held in the box office on the night.

The venue

On arrival at the venue, we headed to the box office to collect our PA ticket and wristbands. The wristbands not only give us access to the balcony and toilets, but also allow us access into the building through a side door next to the box office meaning that I can avoid crowds and queues. This means minimal fuss. Once we were in through the side door, we had our bags searched and were shown the stairs/lift to the accessible area. All we had to do then, was show the balcony staff our wristbands and they took care of us for the rest of the night.

It’s clear that staff at Manchester Academy are well educated and briefed on disability awareness and access policies. Staff are always friendly, sensitive and helpful around everything access related. This is evident right from the staff at the end of the phone and email to box office staff, bar staff, and contracted security and stewards (Show Sec). It’s no mean feat coordinating seamless access all the way through. Whatever Manchester Academy are doing, it works.

On the night that we saw the Vaccines, the venue was extremely busy and uncomfortably warm. Staff on the balcony worked non-stop all night ensuring that everyone had a good view, enough room, a seat for those who needed it and worked on opening and closing doors. They were able to answer all our questions on where things like merchandise and toilets were located and credit must go to the balcony staff for maintaining a great atmosphere all night.

Having the right staff, organisation and attitude really does go such a long way. Thanks so much to Manchester Academy for always being spot on!

If I’m giving an honest review to anyone who hasn’t been to Manchester Academy before, I should probably say that it isn’t the easiest place to get to. The journey always destroys me. They have some excellent travel information on their website which makes it about as easy as it can be but driving around the area is enough to increase your blood pressure. Expect to navigate bus lanes, traffic lights and one-way systems. In addition, the nearest train station is Oxford Road which is a good 15-minute walk. Don’t let it put you off – I’m almost certain I’ll be getting a fine for driving in a bus lane but all in all, the night was well worth it. The car parks listed on their website are close by but if you arrive after 6pm, you may be able to nab a free space down one of the side streets.

Dream Wife

I’m a sucker for the subconscious hints around support acts and early on I guessed (and hoped) that Dream Wife may be supporting The Vaccines on their tour. They occupied space close by in many of the magazine spreads that The Vaccines did in the lead up to their album release and were also played closely on the radio. I hoped I’d be seeing Dream Wife again on the tour and I was ecstatic when they announced they’d be supporting.

I saw Dream Wife for the first time at Night and Day Café at Independent Venue Week 2017 and I fell in love pretty quickly. I caught them again later in the year at Truck festival where they were utterly ferocious. It was an incredible atmosphere and compliments were flying around the tent long after their performance.

I was super excited to see them for a third time and as good as they were in previous performances, they’d definitely gone and upped their game. Dream Wife are insanely fun and every so slightly scary. The Dream Wife persona is manically fierce, yet their colourful punk rock game is seductive as hell. One album in and they already have a real arsenal of perfect punk hits. Dream Wife are a true live band that just happen to translate perfectly in their self-titled debut (not forgetting their initial down-right addictive EP). Lolita, Let’s Make Out, Somebody and Kids were utterly devoured by a hungry audience who, I feel confident, were not prepared for that. Having already seen them twice, they still had me shook. I felt bloody alive.

Honestly, after Alexandra Palace, my head is telling me to take some time out from live music but my heart is crying out to buy tickets for Dream Wife’s headline tour later this year. If you haven’t seen them yet I seriously urge you. Find them, get some tickets and thank me later!

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The Vaccines

After two and a half long years, I was so ready to see The Vaccines play a full headline show. The last time I saw them headline (festivals don’t count) was at Blackpool Empress Ballroom back in 2015, and what a bloody show that was.

With a spanking new line-up they played like a new band and as always, were bloody spectacular. Having released Combat Sports little over a week prior, you could forgive any audience for not yet having their heads round new material. But tell me how many bands could bring a sold-out concert hall to confidently carry them through material so fresh from the oven?

Not only did they provide a new set of jams, The Vaccines injected life into golden oldies, with my personal highlight (apart from Wetsuit) being a fully pumped rendition of No Hope. Oh, how we belted our little lungs out!

The Vaccines took to the stage to the sound of Abba’s Waterloo, drowned out by a 2.5k strong Mancunian choir. Then, opening with Nightclub, they crashed right into their setlist like a bull in a China shop. From the brand new to the vintage, The Vaccines continued to beat us about our ears, lungs, and souls with classics like Wrecking Bar, Handsome, Teenage Icon and 20/20.

As if there was anything not to love about the Combat Sports, new tracks went down in Manchester as if we were being graced by the second coming. Mid performance, as the boys mopped their brow and wet their whistle, the crowd taunted them into I Can’t Quit with an introductory chant of ‘I’m over it’ before the band joined them with an utterly explosive rendition.

There is nothing quite as euphoric as a power-pop anthem brought to life and there was nothing quite so electrifying as this Vaccines come-back. Whilst Norgaard has been a climactic finale for many years, it now brings us to a mid-show peak, causing a violent wave of ecstasy through the main hall. We buzzed off Take it Easy, Dream Lover, Your Love Is My Favourite Band and Out on the Street (of which I am currently stuck in a cycle of repetitive listening). We belted out some Melody calling and then clung to Wetsuit like we were hearing it for the very last time.

The encore brought forth a barrage of classics ending on a devastatingly hypnotic performance of All in White.

There is nothing I love more than seeing The Vaccines live. It’s a feeling yet to be topped.

It was truly worth the wait and every bit as incredible as I could have hoped. I have missed them so much and I am buzzing to have them back.

10/10 every time, thank you for being the greatest band on earth!

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@thevaccines are back 👊

A post shared by hannah mckearnen (@buggalugs_) on Apr 9, 2018 at 4:00pm PDT