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?

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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.

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!

oznor

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

A letter to Alexandra Palace – The Vaccines + Dream Wife / 14.04.2018

I’ve been in two minds over whether I should write a blog post about this. It’s undoubtedly the worst experience I’ve ever had at a gig – if you’ve read this blog, my bad experiences are vast and include having my tube pulled out. It wasn’t good. On the one hand I totally wanted to share what happened. I blog about live music and access and this was quite a significant event. On the other hand, I don’t want to become a serial complainer and I don’t want this blog to be an outlet for that. Also, being completely honest thinking about it is enough to induce tears and all I want to do is sit under a blanket, drink tea and feel bad for us.

However, I decided to write an email to Ally Pally. I gave them ample opportunity to fix this and they made it quite clear that they have no intention to do so. Therefore, in lieu of a blog, I’ll post that here instead.

To whom it may concern,

On 14^th April 2018, I visited Alexandra Palace to watch two of my favourite bands – Dream Wife and The Vaccines. Having purchased an accessible ticket, I was led to believe that my access requirements would be met. My disability means that I cannot enter crowds due to a complex health condition. My condition means that my joints can become dislocated very easily when knocked (Ehlers Danlos Syndrome) and I am also attached to a feeding pump via a tube in my stomach (Enteric Neuropathy, a form of Intestinal Failure). This has been pulled out in crowds before and is very vulnerable in busy areas. If my tube is pulled out, it requires surgery to be replaced. Whilst my condition means that I get tired and need to sit down for regular rest breaks, it does not restrict me from standing up or having a dance – I attend a lot of live music events and often use the viewing platform as a safe area to do so. My condition does not disable me from enjoying live music, but the policy that your staff implemented on the night of my visit did.

My party held two accessible tickets with personal assistants plus one standing.

On arriving at your venue, we presented our accessible tickets. The staff member scanned it and another staff member very politely searched my bag containing my medical equipment and cleared us to go through. We asked a member of staff on the door where the accessible provisions were and he looked at us blankly. I showed him our accessible tickets and he said ‘What is an accessible ticket? Do you mean you’re disabled?’ Two further staff members then asked us ‘Are you disabled?’

The first change that would improve the experience of your disabled customers is providing your staff with training on appropriate language to use when referring to people with disabilities. Please use ‘accessible ticket’ (not ‘disabled ticket’ since a ticket cannot be disabled) and never ask a person ‘are you disabled?’ Instead, ask them what their access requirements are so that you can best meet their needs.

At the information desk, the two accessible ticket holders and our personal assistants were given gold bands and told this would give them access to the viewing platform. We found the entrance to the viewing platform well signposted and after purchasing merchandise, headed towards the door. On presenting our bands, the staff member had not been informed about the gold bands and again we were asked ‘are you disabled?’ The staff at the bottom of the viewing platform were also unaware of the purpose of the gold bands.

We were the first people to arrive on the viewing platform and decided to sit on the back row so that we could get up and dance without obstructing anyone else’s view. At some venues, a white line is used at the back of the platform so that people who need to or wish to stand up can do so in a designated area without disturbing seated customers.

As Dream Wife were getting ready to come out we got up and stood at the back of the viewing platform. We were then approached by a member of staff who told us that the viewing platform was a sitting only area for safety reasons. Your venue is the first venue that I have come across that enforces this rule. I asked the staff member if there was a safe place that I could stand since the venue was very busy and he said only the crowd. At this point, I headed back to the info point and asked to see the policy and find out more information on the reasoning. Like the rest of the audience, I like to dance and have fun when I buy tickets to a gig – had I known that disabled people were not allowed to join in like everyone else, I would not have bought a ticket. The staff member on the information point informed me that the rules were down to individual staff members and that there was no policy as such. He told us that there was a white line at the bottom of the viewing platform and that I would be able to stand in there. He said that this area was only for accessible ticket holders, so it would not get too busy. This was completely acceptable, and we headed back. We enjoyed watching the first song that Dream Wife performed before we were approached again and told that we could not stand behind the line. By this point the crowd was far too busy for me to stand in and I had nowhere else to go.

I headed back to the info point and a supervisor was sent over to enquire about the policy that was being implemented. After speaking with staff, the supervisor told me that those were the rules and implied that it was my choice to be disabled. Disability is not one size fits all, and access requirements are diverse. Some people can stand through a whole event, some people can stand through part of an event. Some people use wheelchairs (less than 5% of disabled people). Some people have seizures or chronic pain or mental health conditions. Enforcing a sitting down policy, with no safe space to join in is discrimination against those who do not need to sit down. Your staff member said this: ‘Where you fall between sitting on the platform and standing in the crowd is entirely up to you.’ My disability is not a choice and it is your legal duty to ensure that reasonable adjustments are made so that people with all kinds of disabilities can access the events that you provide. You cannot pick and choose whose access requirements your venue meets.  

The Equality Act (2010) protects me from unlawful discrimination as I have a physical impairment which has a long-term impact on my ability to carry out normal activities (such as attending concerts). The equality act describes discrimination as being treated unfairly because of something arising from a disability. If you cannot prove that enforcing a policy that requires me to sit down (whilst not enforcing this on able bodied members of your audience) does not achieve a legitimate aim of safety (as quoted by your staff) then you have unfairly and unlawfully discriminated against me.

Having no other option, we went to sit back on the viewing platform. Not long after sitting down again, we were approached by another staff member who asked me to step outside and speak to him. The staff member repeated the same things that had already been said and I found him to be patronising and intimidating. I told him that I didn’t want to complain, and I invited the opportunity to speak after the gig so that they could make the experience better for their disabled customers. I offered to inform him of policies that took place at other venues as this was certainly the only venue that I had experienced this sort of treatment. To this he very patronisingly replied ‘Right, I’ll take your word for that.’ It was not only the unfair policies that were being forced upon us but also the inappropriate and disrespectful way that we were spoken to.

At this point both my friends and I were very stressed and upset to the point that it induced some very uncomfortable ticcing fits in my friend who has Tourrette’s Syndrome. I saw only two songs that Dream Wife performed due to the disturbances by your staff members. I saw very little of The Vaccines as I spent most of the night in to the toilet vomiting, a symptom of my intestinal failure, exacerbated by stress.

The accessible toilet was operated by a radar key, held by a staff member on the audience side of the door. On the other side, key holders also included paramedics and those with backstage passes. This meant that whilst I was using the toilet, people were continuously opening the toilet door from the other side. This seriously compromised my privacy and dignity whilst I was unwell, and I suggest you implement a procedure to combat this. I was not the only disabled person who went through this as another customer came out and told me that they had the same happen to them.

Not only did the treatment completely ruin the enjoyment of the night for me and my friends, who had spent around £300 (each) on travel, accommodation and tickets to the gig, but it was also a distressing, unpleasant and traumatic night for us all.

I doubt that I will be returning to your venue, but before making a formal complaint, I would like to do what I can so that other people do not go through the same experience that we did. I do not want an apology, I would like to see change. Disabled people have the right to enjoy live music just like everyone else.

I’d be very grateful to speak with you and assist where I can to ensure that improvements are made.

 Sincerely,

Hannah McKearnen

 

 

Album Review: The Vaccines – Combat Sports

The Vaccines are back with their fourth studio album Combat Sports, charting in at #4 and nobody could be more excited than I. Releasing a new indie album can be a fairly thankless task. Journos, bloggers and fans are pretentious, reserved and obsessed with asking bands to prove they are not the Strokes or the Arctic Monkeys. So how are The Vaccines fairing?

After a rocky couple of years (including the departure of their drummer, Pete Robertson in 2016) LP4 seemed like a distant dream.

By summer of 2017, The Vaccines had successfully sourced themselves a new drummer (Yoann Intonti of indie power-pop band, Spector) and crowned the much loved Australian live member, Timothy Lanham, an official member of the band. From three members to five, the band were ready for a strong come back and a glimmer of hope emerged as they played brand new material at several festivals last year. Footage of the new material was devoured and fans desperately anticipated an album.

In November, the album was given a name, a date was set, album art was published, and a very long-awaited tour was announced.

Over the past 3 months, one by one, The Vaccines have drip-fed song at a time from Combat Sports. Their first single, I Can’t Quit came accompanied with a gritty music video featuring Staffordshire terriers, blood, fresh linen and culminated ominously with one man down. As is the Vaccines way, it coupled upbeat melodies with a darker underlay. In addition to this, each of their following singles was released with a very special 80s style Top of the Pops live music video, delivering not only a delightful sound but a full package of aesthetics and influences. What a treat!

After releasing 5 delicious singles from their upcoming album, the full collection finally arrived on 30^th March – and what a Good Friday it turned out to be! I would be lying if I said I didn’t wait up for a listen in the early hours.

Euphoric power-pop

Whilst rumours hinted LP4 may see a stylistic revisit to the snappy indie pop of their debut, there’s certainly no repeated material here. WDYEFTV? was a collection of rough dance-worthy garage whilst Combat Sports is clean-cut, sharp and triumphant. It’s undoubtedly their most poppy sound yet.  The melodies aren’t just catchy, the lyrics are also punchy and depressingly victorious with every ingredient of a classic anthem.

It’s hard to pick out a climax on the record when nearly every track is bulging with euphoria. The album opens with Put it on a T-shirt, admittedly, more power-croon than power-pop but no less infectious than its consequent tracks. The record speeds up as it delivers their elated first single I Can’t Quit followed by Your Love is My Favourite Band, a blind profession of love and possibly the most addictive track on the album. Surfing in the Sky is confidently fierce and maintains a quick tempo before Maybe (Luck of the Draw) brings us down a peg – floaty, reflective and dazzlingly synthy.

When interviewed for Radio X, Justin said that his favourite track from the album was Young American. This will never be a classic power-pop anthem, but nonetheless it is an extremely important track. Young American is the sort of track that wouldn’t usually make a Vaccines A-side, but I’m so glad it did. On first listen, the lyrics are hard hitting and a touch surreal yet intensely emotional (‘suffocate me in between your thighs and take me swimming naked in your eyes). Whilst the band have proven they’re more than capable of pulling off slower tracks (such as Wetsuit and English Graffiti) Justin’s ability to perform such a delicate vocal range is rarely showcased. Young American is the sound of an open wound and yet insanely comforting. It’s no easy listen, but it’ll be there for you when you’re feeling tender.

With the arrival of Nightclub, the album turns from self-absorbing comfort to an unexpected punch in the face. Much like the ear-ringing assault of hangover, Nightclub is a sonic boot camp; an aggressive riff, an ominous bass, a fierce vocal delivery and a brutally rhythmic drum assembly. It is a fast-paced delivery of chaotic thoughts within a focused soliloquy. This track is the epitome of Combat Sports.

If Nightclub is a boot camp, Out On the Street is an apologetic muscle rub.  And like any post night-out hangover cure, it’s a back handed apology if ever there was one – ‘I thought of her, I thought of you, I thought it through and then I called you’. Listen to this track with a sensitive ear and you’ll hear an open and innocent vulnerability, but it can also be enjoyed by carelessly belting out the lyrics in the early hours of a house party or on the long, cramped drive to your next festival. A true Vaccines anthem.

On first impression Take it Easy was my personal favourite. It encompasses all that is good about both classic nostalgic power-pop and current indie-pop. Sonically, it’s a cross between Status Quo’s Rocking All Over The World, and Metronomy’s The Look. Whilst The Look takes me right back to folding away a wet tent in the dark at Glasto ‘17, Take It Easy takes me back to Saturday afternoons in the 90s, dancing around the back room on a beige floral carpet. It reeks nostalgia and yet it’s as original as they come. Take It Easy is a self-conscious track (that’s the problem with people like me) that gives a nod to naïve ambition (I wanna be a star and I want to make it rain/ give me words of wisdom but don’t let me take the class). The tone is self-deprecating (standard Vaccines) yet bashfully accepting of youthful, try-hard ignorance. It’s a salute to everything that we once thought cool and permission to chill out and forgive ourselves. In five years’ time it will comfort me as I look back on my sincerely chosen hipster glasses. And this very piece of writing.

The penultimate track, Someone to Lose is another glorious track, riddled with relatable nostalgia, to belt out your car window, though an incredibly humbled predecessor to the finale. Rolling Stones, is more of a victory march than an ending. The melodies are wholly triumphant with a sound that incorporates a synthesizer turn church organ, a solid base drum and most importantly an absolutely gut-busting guitar riff. It’s the closest thing to a power ballad that the band have ever put out. If the bombastic Give Me A Sign ended English Graffiti on a question mark, Rolling Stones confidently ends Combat Sports like a self-written eulogy to their most colourful album yet.

Pre-sale bundle

Image description: the contents of The Vaccines – Combat Sports album bundle laid out on a golden wood background. Top left, a square vinyl record sleeve featuring the top half of a man led down holding the hand of a person who is out of shot. He has two rings on his hand. His face is out of shot except for his mouth. He has dark brown curly hair. He wears a leather jacket and a t-shirt that says ‘combat sports’. Across the top of the album it says ‘The Vaccines’ in orange. The top left album is signed five times. Top right is a audio cassette with the same cover as the record sleeve and bottom left is a CD with the same cover again. The CD is also signed five times. Bottom right is another vinyl record sleeve, the identical to the first, without signatures.

The Vaccines offered some delightful packages to choose from on pre-ordering Combat Sports including tapes, CDs, limited addition coloured vinyl and a special .zip file of demo tracks. I ordered one of everything, not least because it gave me* access to pre-sale tickets to Ally Pally and their tour. The demos are pretty interesting, so if you didn’t pre-order… unlucky.

*should have given me access.

 

 

 

Image description: A black vinyl record sat on top of the record sleeve as described above. The picture on the sleeve cannot be seen. In the middle of the record is a red sticker.

Image description: A orange vinyl record sat on top of the record sleeve as described above. The picture on the sleeve cannot be seen. In the middle of the record is a black sticker. In the top left corner there is a small card with the picture from the record sleeve on it.

I’ll be seeing the band live at Manchester Academy on Monday and Ally Pally on Saturday – gig review inevitably to follow!