February Happiness Project

I was hoping to get this blog post up before I went to Northern Ireland/Ireland and not over half way through March - but I was so busy before I went away that I just didn't get chance to, so here it is! If you missed January's Happiness Project or are new to the game, check out my early post to find out about it and read my January happiness goals here.

My main theme for February was:

"Stay busy & be creative"

My motivation here was that I don't get a lot of time to do the things that I enjoy as I'm always so busy with uni work, appointments and other commitments, but at the same time I do spend a lot of time just crashed out, daydreaming or mindlessly scrolling through social media. When I was younger (probably before social media was really a 'thing' and before smartphones existed, back in the days when using the internet meant running half way round the house to plug in the very extended telephone cable) I had loads of hobbies. Before I was ill, I loved playing sports (especially basketball) and my go to activity was always drawing or colouring or creating something. When I became ill I really took creativity seriously because it was something I could do from my bed, where I spent all of my time and I didn't and couldn't do anything else. I went through loads of sketch pads and I found them all in boxes when we moved into the new house in November. I also hand made a lot of jewellery, sewed, glued, made cards and cross-stitched. Since I started work and college again I haven't done any of those things and I felt that if I spent less time sitting around doing nothing then I would have time to do the things I enjoyed again. A few of the themes for my monthly happiness projects are around picking up old hobbies and doing things for me, that I enjoy doing again. 

Moving onto my mini-goals. I feel like I've achieved some of them and to be honest I don't really feel like I had much chance to sit around in February as I was super busy so this restricted a bit the individual goals but a lot of my commitments through February were really exciting, voluntary and creative in themselves so I still feel that I achieved my overall goal even if the individual goals weren't met exactly as I intended. I am going to make a list at the end of each monthly happiness project of the goals that I haven't quite achieved and roll them over and I will cross them off when I eventually achieve them at the end of a monthly happiness project. But first, February's goals:

• Don't sit and do nothing - Definitely achieved. Towards the end of February I was ill with the flu and that is the only time where I did sit and do nothing, but I am not going to hold that against myself. I spent a lot of February writing which is creative, I did two blog posts for Attitude is Everything (one for their website which you can read here and another one as a task for my interview) and I also wrote a record amount of blog posts on here (3 or 4, which is good for me!). I did a lot of brainstorming for job/career inspiration and wrote out multiple personal statements for individual job applications. Some of it was stressful, but in the end I was writing about the things I was passionate about for each and every one of those things and so it wasn't too much of a chore.
• Draw - I did a lot of this in January but less in February. I did do a little bit of drawing for some cards that I made for my pen-pals and Post Pals so I'm going to call this one a yes/pass.
• Paint - I haven't managed to get my paint brushes out at all in February which is a shame. So this one has to be a no for February but I did do a couple in January so I'm going to at least say that I have achieved it this year. Here are a couple that I did in January:

Inspiration from Formby beach

Love the colours in this one which you can't avoid if you decide to paint Bowie. I'm a big Bowie fan and I did this one I think a couple of days after he passed away.

• Take photos - Since I failed project 365 (three times, due to forgetting to take pictures!) I haven't really taken too many pictures. I got into the habit of trying to enjoy things rather than getting my phone out all the time. But I have definitely been making more effort trying to capture things this year and this month, especially since I got a new phone in January which has a better camera on it. Here are some of my favourite photos from February.

This picture ties in well with another of my Feb goals - 'take walks'. This is a lovely field not far from me that I love walking through on a sunny day. There are great views of the hills in the distance and if you go later at night, the distant towns light up. I took this one on Valentines day when I was out on a walk with Sam.

I went to the Tate Liverpool with Laura in February and this one was taken out of the window on the top floor. Liverpool looks quite pretty from this little pane, especially on a sunny day.

Technically, I didn't take this because I'm in it but this is a February favourite of me and my wonderful Gran at Amy's hen night.

I didn't eat any food on the hen night, but I did indulge in some Parma Violets that were on the table and matched the table decorations and props.

Sam's sister Emily brought this beautiful little darling into the world on 23rd February. Charlotte Natasha - only a few hours old here. This is definitely my picture of the month.

• Take walks - I absolutely love walking. This is pretty much what I use all my physical energy on. I took a lot of walks with Irwin, especially late night walks which I find lovely before bed and really wind me down for the day. This one is a definite yes. I think I went on a walk nearly every day in February with the exception of my flu week.
• Read - Uni work - yes, and I've also treated myself to a few magazines which I haven't done for a while. I think my intention for this point was to make time to pleasure read. I haven't actually picked up an actual reading book throughout February because I haven't had time, but I'll count my magazines as reading for pleasure and since it's not something I often treat myself to that's a good change. I think I only really read the magazines on trains and in waiting rooms but some of my favourite bands did some good interviews in Q and NME in Feb (including, The Vaccines, obviously) so that's why I bought them.
•  Sew - I really wanted to get my sewing machine fixed for this month so that I could start contributing towards Team Tubey orders again. I found a really good deal for a new machine on Groupon but I just can't afford it. I was quoted £70 to have it repaired but I can't afford that either. I'm really sad about it. I used to sew pretty much every day and I haven't been at a machine in the longest time. Nada has been hammering away keeping on top of all the orders solo, but I have had to turn belt requests away which is really disappointing. I've been trying to help out on the page sorting through orders and keeping up with the page but that is about as much as I can do right now. I'll roll this one over and hopefully at some point this year I will be able to afford a new sewing machine or get mine repaired.
• Learn something new - I've been actively learning an awful lot more about accessibility through February and I've definitely learnt a lot on my degree. I was sort of hoping to pick up a new skill or hobby or something. I've definitely not completely failed this one as I learned a lot of new things in February but I'm going to roll this one over as well.

That's all my goals for February! I'm not too disappointed with how it went. As with last month, I'm going to end this months Happiness Project with the theme for next month, but not the smaller goals. Then I'll list my roll-overs from January and February. Next months theme is "Be happy" which I suppose is pretty much the theme of the whole project, but it made sense to have this as an early monthly goal.

Roll-over goals

January - "Be healthy - look after your body"

• Be strict - Ticking this one off in February, I've had my moments but I've been super restrained this month.
• Exercise - Since I took so many walks in February, I'm ticking this one off as well.
• Rest.
• Take tablets - Mastered this one now. Not taking medication is now an exception rather than a rule, usually if I don't feel well enough to hold them down. I've started some new meds for my kidneys that have to go down my jejunal tube for absorption reasons. I've been really strict with them and actually noticed a big improvement for the first time ever since starting them. They've also helped me get into a better routine of taking all of my medication on time.
• Be honest - Whilst in Northern Ireland I threw up monumentally in the Titanic Museum toilets. It's because I ate a whole share bag of kettle crisps #confession. This goal was about admitting where I was going wrong. Admitting where you're going wrong helps you not to make the same mistakes again.

February - "Stay busy - be creative"

• Sew.
• Learn something new

I'm going to update on my trip to Northern Ireland and Ireland hopefully in the next few days and it will be time to do my March Happiness Project before too long since uploading this one happened so late. I'm all finished for Easter now and it's set to be a busy one with plenty of assignments and dissertation work to keep me busy. If you're just breaking up from uni for Easter, then enjoy yourselves - you earned it!

Long overdue life update

I've been meaning to do this for a while to keep on top of where I'm at so I feel like I might miss some events out here but this is just going to be an update on my life and my health.

I went through January with very little feed because the tube that I had put in just before Christmas would not hold my giving sets and leaked everywhere. I tried a few different adapters and techniques advised to me by the Abbott nurses and nutrition nurse at the hospital but nothing really worked and I just had to feed into a towel and keep changing my clothes. It meant I couldn't take my feed out the house, so I really wasn't getting much. I lost a bit of weight and I was feeling weaker and weaker as time went on. I got a bit frustrated at chasing everyone after I'd already spent most of Christmas chasing people and so I neglected things for a while and just went without for an easy life.

I ring one person and they tell me it's not their responsibility, and then I ring another and it isn't theirs either. Some people point the finger and some huff and puff and sigh and tell you they're really busy which makes the situation go away for them but it doesn't give me any more nutrition or energy. It's quite demeaning and although I shouldn't take it personally - I've worked in the NHS, I've worked with frustrated patients and I know that it's a very busy and stressful place to be - but it makes me feel like a pain in the ass. After chasing everybody over the busy Christmas period I just wanted to feel not like a pain in the ass for a bit and so I went without.

I had a clinic appointment with my new consultant in Salford in January and he contacted my team in Wythenshawe and asked them to sort it out and so it was finally sorted out at the beginning of February. The last few days leading up to getting it fixed I was really feeling like I was ready to drop. On the last day I was so faint that by the evening I couldn't even stand up properly. I was so ready for getting it fixed. Interventional radiology are always absolutely excellent - they are my favourite people. They always have so much time to make sure that everything is right and everything always runs so smoothly. Like all the NHS it's always really busy with lots of people going in and out but they never make me feel like a pain and they're always so lovely. Anyway, now I have my old button style tube in. It's working perfectly, I've started to put a bit of weight on again and I have more energy.

I had my barium results in January at my appointment and I had my full bowel transit study and the results of that. Both tests showed poor movement throughout my bowel which we already knew but this just sort of put numbers on it. I tried a drug that I hadn't tried before, erythromycin, which is an antibiotic but is also used in some cases for motility. Wythenshawe are quite against using it because it's an antibiotic and the evidence for effect as a motility drug is quite weak, but Salford noticed that I hadn't tried it and asked if I wanted to try it. I got a bit sick of trying new drugs because they kept putting me on ridiculous obscure painkillers that made me really ill, but since I don't really have any extreme reactions to antibiotics usually, I gave them a go. I tried a low dose first, and then he told me to put it up to a high dose but that, the higher dose might give me cramps and if that happens, and they didn't make me any better then to stop them. Unfortunately, they did give me bad cramps and so, I stopped them. There's now another drug that isn't licensed yet and has some side effects on the blood pressure. He's not sure whether I'm going to be suitable to try it but if I did try it, they would try it in hospital to be safe. There's so far only been one trial of it and so he's sent me the paper to have a read through and hopefully we can decide together whether or not it's going to be an option I want to try.

I've also been applying for a few jobs for when I finish uni. I've obviously got my place on teacher training but I'm feeling that I want to keep my options open at the moment. If you remember back to when I was applying for my PGCE in October/November last year there was a lot of stress over whether or not the universities would take me and initially they told me that they wouldn't due to the fact that I had 'different' GCSE's to everyone else. I had to take my GCSE's at college two years late, I sat them in a year, I don't have as many as everyone else (7! Still a number I'm proud of) and because I sat them in college, I don't have any 'curricular' subjects other than the core ones because the college didn't offer any - I just had to take what was on offer. I really enjoyed my college course and I never realised that what I took would be a big deal - I needed a minimum of 5 to get onto my A-Levels and I exceeded that and moved on to the next phase in my life. When I started my English Language degree the plan was fairly certain to go on and do teaching. I'd had a brief look at Speech and Language Therapy but realised that the course options weren't practical and it was always the plan to do teaching. I pretty much had the next few years of my life set up and so when uni came along and said that I wasn't going to be able to do it, not to sound dramatic but I felt like my whole future was falling apart. I was so miserable, I didn't know what I was going to do with my life. I moped and cried and acted like a complete bitch for the next couple of weeks, but in that time, I started to think about other options. Because I had to.

Eventually the uni rang back and said they'd interview me which was good, but I was quite traumatised by the whole thing. I got my place on the Edge Hill PGCE and that was great and things settled down again. But in that really miserable time I'd thrown a few ideas on the burner and since then they've become more and more appealing to me. Teaching is a really stable career which was always what I'd wanted until now. I came out of Salford and felt really ill, I had a bit of a mood lull and life just felt completely unstable. In a way I started to feel like I wasn't compatible with a stable life. But the more I thought about it, the more I felt ok with it. Being unstable doesn't have to be bad. So much changed at the end of last year and I really don't know if stability is what I want any more.

I've started to look at potential jobs, writing and campaigning and doing things that I love and this really appeals to me. I've kept my options open and looked for jobs all over the country and it's felt really refreshing. Two weeks ago, I had an interview in London for one of the jobs that I applied for and it was a really good experience. I didn't get the job but I got some really great, useful feedback and despite it being a rejection it's been sort of confirming of what I want to do. So I've been trying to use the feedback to get some more experience in my weaker areas and kept on applying for more and more jobs all over the country in my stronger areas. I'm spending a lot of my time searching and researching and applying for jobs and it's making me feel much more positive about the future.

My Mum always encouraged me to work hard in my education so that I could get 'a good job and a stable career' and that's always what I believed I was doing. I am still a firm believer that nothing gets handed to you on a plate. You might see some people getting everything they want in life, but I'm always certain that they just worked really hard to get that. Some people have to work harder than others for whatever personal reasons they might have, but everyone can get where they want to be if they work hard enough. I'm glad that I worked hard at uni, because it's going to get me where I want to be. It's given me the skills to develop my writing and explore areas that I'm really interested in. It's going to take me where I want to go in life and give me the options and the tools to do what I want. To me, doing what I want no longer means a stable job and a good wage. The hard work doesn't stop when I finish uni - I know that if I want to do something then I'll always have to work hard to get there. But being happy and doing what I choose to do - that is going to be the best thing that my education has given me. It took a full blown breakdown over what I thought was my collapsing teaching career to realise this and as shit as I felt at the time, it was so worth it to realise what was right. I try to tell myself that everything happens for a reason - I don't really believe that though, it's just something you say to yourself when something shit happens. But my breakdown did end up having a purpose, so I'm glad.

Nearly brought up to date now, just this past week to get through. On Sunday morning of last week I started coming down with a bit of a fever and I thought I was just getting run down or a bit of a cold, by Monday I was running a high fever, I'd lost a lot of fluid, I was feeling really dehydrated and it got to the point where I couldn't sit up. I never get that ill with colds or virus so I sort of knew that this was different. On Monday night I went up to Wythenshawe with dehydration. They gave me IV paracetamol and 1000mls of fluid and let me come home later on Tuesday. The fluid and paracetamol gave me a bit more juice to fight it off and although I was still really unwell, I managed at home for the rest of it. I still wasn't really able to move about properly until Thursday. On Thursday I managed to go back to uni but walking back I could hardly breathe and really struggled to make it back to the house. I was running an even higher fever when I got back and my SATs had dropped too so I climbed into bed and slept pretty much until Friday morning when, thankfully I was feeling MUCH better. I was still really tired and I've been left with this really irritating cough but I'm feeling fine now (other than really tickley cough!) I now know the difference between a cold and the real flu.

The last thing I'm going to bring up to date is the concerts I've been to.

11th February, Manchester Arena - Tame Impala 

I went with my babe Laura to see Tame Impala. It was standing room or seated and Laura was enough of a star to go seated with me otherwise I wouldn't have been able to go. We had really good seats, along the side and super close to the front. Another excellent Australian band called Jagwar Ma (fairly big in their own right!) were supporting and did an excellent set list to get everyone warmed up and then Tame Impala took the stage and the atmosphere was wicked. There was a really chilled out vibe but everyone was stood up dancing and singing, there was funky mood lighting and confetti and just such a good night out. The perfect gig. Tame Impala are so so perfect live, they completely owned. Kevin's voice is also really big live - not that I was underestimating them, but a lot of voices just don't sound as big live, especially in a venue as open as Manchester Arena and his voice was huge and on point all the way through. I just checked my Facebook and I described them as 'cute Australian people' the day after - that's very true. They seem like cool guys. It was my first gig of this year and such a great start! The only problem - which I'm going to mention since I've banged on enough about what a pain my tube is at live events - was that my tube got stood on twice. We were on the edge of an aisle and as my bag is pretty heavy I put it down in front of the seat. Whenever someone wanted to get past I picked it up quick as a flash but a few times people just appeared out of nowhere and nobody notices that I'm actually attached to my bag so twice it got stood on. Imagine trying to explain why I need to sit in the disabled section though when there is ample seating? Probably would have been safer but I didn't bother with the hassle

12th February, Manchester Arena - Against the Current, Good Charlotte and All Time Low

Manchester Arena for the second night on the trot! This time I was with Irwin. At least it was fresh in my mind where I was supposed to be driving. All Time Low were headlining this one, and although I was supposed to see them on two separate occasions before, this was the first time I actually made it there. It was also really exciting that Good Charlotte - one of my favourites as a teenager - and Against the Current were supporting them. Obviously Good Charlotte are pretty huge on their own, All Time Low even admitted that they grew up listening to Good Charlotte, so it was pretty cool that they were supporting. Against the Current are a fairly new band but I had been listening to quite a bit of their stuff already after they did a colab with Boyce Avenue and I like it. The whole show was really awesome and there was a great atmosphere all the way. I was a little disappointed that they didn't do any songs off my favourite album, but I'll forgive them since it was a long time coming to get to actually see them live in the flesh! Again it was standing room or seated and Irwin is always game to go anywhere so we were sat on the end of the aisle. Luckily I managed to avert any disaster situations this time but it still doesn't really stop me from being on edge.

5th March, Manchester 02 Apollo - James Morrison

This one was with Irwin and Becca, and Meggy B and her Mum also went but were sat separately to us. I was a bit worried about this because I'd tried to get some accessibility information beforehand and had no luck. We went to see Kodaline at Manchester 02 Apollo and they were excellent from the staff to the location of the raised platform to the entrance - which were right by eachother. After we bought tickets we found out that the accessibility arrangements were different and so I rang back and spent 4 hours on 9 different calls with robots and various unhelpful members of staff. I sent 3 tweets and a really long email which they acknowledged that they had received but never replied to. So I just had to take a gamble. There were pros and cons to the new arrangements - perhaps if they'd paid attention to my emails they could have made sure there was a bit more room for my crap but saying that we couldn't have had a better view than right next to the stage. There wasn't really very much room for the wheelchairs and us and Becca was more or less sat on our knee in the chair. As with last time though the staff were extremely helpful (shame they couldn't share this with their booking and information line colleagues!) and as I said previously, never have the disabled had one of the best views in the house! It was excellent, we were right at the front of the stage with the best view I have ever had to anything. I've been a fan of James Morrison since he very first emerged and wanted to see him live for such a long time. He is such an amazing performer and we are all still reeling and reliving the night like broken records. To top it all of, at the end, he came down to where we were sat to shake our hand and say thank you for coming. What an absolute gent. Such a lovely guy, with a gorgeous voice. Whatever music you are into, I really don't think you can go wrong with James Morrison. He gave me goosebumps.

So that's it - all caught up. I'm off to Northern Ireland and Dublin on Thursday with Irwin and Becca and we're going to a music festival on Sunday to see Sam Hunt which I'm quite excited about. It should be interesting with all my crap and all Becca's crap - I've been getting accessible travel tips from the lovely SimplyEmma's blog so we are about as prepared we can be and hopefully everything will go smoothly. I'm hoping to get my February Happiness Project up before then, so stay tuned :)

xxxx

The State of Access Report 2016

If you follow me on Twitter or have me on Facebook or know me in person or read the Independent newspaper, then you may be aware that today is the publication of Attitude is Everything’s 2016 State of Access Report. I've been getting involved in every way I can with this excellent charity of late and I love the platform that it gives to an issue that's so important to me personally.

I appreciate that many people may not want to read the full State of Access Report – it’s 40 pages long - but as a disabled gig-goer I found the report extremely relatable and incredibly self-validating. So I read it all. When I go to a gig and I explain myself (which, as you know, I simply HATE doing) it's often met with complete puzzlement at best. Nobody seems quite sure what to do – am I the only disabled person who goes to gigs? This is what it felt like, until this charity came along. The report says that 280 ‘Mystery Shoppers’ faced similar or exactly the same issues as me in both attitude and physical barriers to music. Apparently some people feel that the inclusion of disabled people in live music is not that important. It’s not the end of the world if we don’t go, right? Perhaps this is why the issue receives so little attention and awareness. But why should we miss out on the buzz, fulfilment and culture of live music? Not that any of us want a pity party but most, if not all, disabled people go through enough crap in their lives already. Asides from being an issue of absolute equality, we deserve some fun in our lives as much as anyone.

‘Mystery Shoppers’ are disabled people who take voluntary surveys for events that they attend at various venues throughout the UK. The information used from these surveys is used in the State of Access Report and these bring together common themes and issues faced by disabled people. It would be all well and good going round asking venues if they provide accessible facilities and they would point out some wheelchair ramps and a disabled toilet and get a nice big tick. But accessibility isn't there for the venue owners, it's there for the disabled people that use it. Only disabled people can judge what makes a venue accessible to them (and it’s different for everyone – many disabled people don’t need ramps and disabled toilets) so therefore … Mystery Shopping.

Asking everyone to read the full report would be a little ambitious of me, but if you do want to, it can be found here. The executive summary rounds up some of the main points and I also spoke to the Independent newspaper for an excellent article that they featured. The online version is here. And the print version is below.

The report is all about picking out areas that matter to disabled people and exposing the areas of bad practice that are really not acceptable when striving for equality. I have written a short blog for Attitude is Everything, which should hopefully be published at some point this week but I also thought I'd do a piece on my own blog about the issues in the State of Access Report that jumped out at me.

A key theme throughout the report, as in the last report is that over a third of venues provided no access information at all on their website. Only 17% of websites provided good information and the rest were either poor or adequate. Some shoppers even reported that staff were completely ignorant of the facilities they provided and weren't able to tell them whether or not the venue was accessible at all! This is something that I too have had a problem with and it’s so frustrating. It’s like banging your head against a brick wall.

 Due to the general inaccessibility of the world, most disabled people have to meticulously plan everything they do. If they can’t get hold of access information, they can’t plan and therefore they either take a very risky leap into already seemingly untrustworthy waters or miss out on seeing their favourite bands.  It’s also really important to raise awareness of the fact that access information needs to be tailored to all disabilities – is there a ramp? Is there a toilet? Is there a sign interpreter? Hearing loops? Large crowds? Seats for non-wheelchair disabilities? Strobe lighting? Will there be medics onsight? Something that is important to me is whether the staff are knowledgeable on disability and accessibility so I don’t have to keep explaining myself. Do the staff know the appropriate policies and procedures to follow when I come in with my unconventional disability? I hate asking for information and being met with ‘don’t know, sorry’ – well… find out? Solving this problem really is largely dependent on employing helpful, polite staff with a bit of a can-do attitude. The benefits of informed staff can be found on page 29 of the report – a really important part. I wish all venues would read this section!

Another issue raised by the Mystery Shoppers was that ‘normal’ people can book online, and choose where they are sat. Disabled people often have to ring up, spend time in queues, speak to robots and still can’t choose where they sit. This isn't really equality and it's not a fun way to spend hours of your time!

The report states that accessible toilets are only accessible if they are fit for purpose. You can't just take a room and put a disabled sticker on it. When we went to see Kodaline, Becca (whose wheelchair isn't actually that big) only JUST fit in the toilet. The wheelchair took up the whole room with little room for Becs to get in and out and it meant that we didn't know when she was ready because she was so squashed up she couldn't open the door from the inside. So psychic friend powers and guesswork had to be employed. I've spoken to friends with bigger wheelchairs, who need a carer who have actually had to use facilities with the door open!

Only 38% of bars were lowered for wheelchairs but this is a slight improvement since the last State of Access Report (22% 2 years ago). Personally, at the venues that I have visited, I've never come across a lowered bar. 38% is still pretty shoddy.

An issue that I personally found very sad was that only 18% of venues had a dedicated viewing platform. Often, when I ask if I can go somewhere with seats and not in a crowd, the latter need isn't met. We just end up somewhere really busy, with seats and often have to share it with able bodied people who stand up in front of us. If seats are taken you either have to explain to able-bodied (often drunk) people (who are stood on the chairs) that you need a seat because you’re disabled, or sit on the floor, or go home. It's not really appropriate to put disabled people in these situations. Especially when they have come out to have a good time. Dedicated veiwing platforms are an area just for disabled people. They are not only raised so that people in wheelchairs can see above the crowd, but they are a space where individual accessibility needs can be met.

Sticking with the theme of a viewing platform, the report raises the issue of obstructive staff telling disabled customers that they aren't disabled enough to access the platform. I don’t know how to explain how upsetting and demoralising this is. It just makes you feel like you don’t deserve the experience. It makes me want to curl up in a hole and never attend an event again. It’s truly awful. If I could highlight one area of the report that is most distressing for me, it’s this. Again, benefits of informed staff. Page 29. My favourite page.

Whilst music is an activity that largely involves listening, only 38% of the venues shopped were fitted with a hearing loop. In my opinion, this just makes the venue entirely unfit for purpose at all. The report raises awareness for the need for more hearing loops, signers and access lyrics/live subtitling so that deaf people are able to enjoy the experience too.

It also found that most people assumed that venues provided this service which leads me onto a popular misconception. Most people just assume that accessibility has to be met. We assume that discrimination is illegal. Discrimination sounds illegal. My friends are always shocked when we go out somewhere and there isn't a lift. I do believe that most people just assume that disabilities have to be catered for and that it isn't optional. They think that there are provisions for everything everywhere, because there has to be!

Most people assume that the goal we are trying to achieve (accessibility for all) has already been reached. There’s so much need for awareness to demonstrate that this is quite far from being reached and there are still so many areas for improvement. This is what the report does, it highlights these areas and this is why it’s such an important (and not boring!) piece of work!

This turned out way longer than I intended. There is lots more I could have said, but please read some of the documents and articles and educate yourself. When you are at a gig, or if you work and at a venue, keep a look out for those who are struggling and do what you can to make a difference. J

Let's talk about my feeding tube....

This week is feeding tube awareness week! Before dismissing the need for awareness of feeding tubes, please read this entire post, or at the very least, scroll down to find out why I feel awareness of feeding tubes is so necessary!

I've seen several blogs and posts this week that have focused on and made some excellent points about various aspects of feeding tubes and living on artificial nutrition. Technically, enteral formulas aren't 'artificial' - they're made up of all the nutrients taken from real edible solution and put into various forms to suit the medical/nutritional needs of the individual consuming it. True artificial nutrition is TPN (Total Parenteral Nutrition) which bypasses the digestive tract completely and is delivered directly into the vein either through a canula or PICC (peripherally inserted central catheter) line if it is short term or through one of the many different types of central line if it is needed long term.

I am an enteral feeder - this means that my feed goes into a part of my digestive tract. My tube is a transgastric jejunal tube, or a PEGJ. It enters my body through a stoma (an open tract from the outside of my body to an internal organ) in my stomach. My main tube contains two smaller tubes. One leaves the main tube in my stomach and is used to drain my stomach of gastric build up or vent excess air that I can't get rid of. The other one continues on to the end of the main tube which goes through my stomach, through my duodenum (the first part of the small bowel) and into my jejunum (the second part of my small bowel). I've been with a broken tube for over a month and it has been hell! I usually feed over 24 hours and as my tube has been leaking, it's meant that I haven't been able to feed very much and haven't been able to take my feed out the house with me. I lost a lot of weight and I felt so dehydrated. I was ready to drop the day before it was fixed, but on Monday (the start of Feeding Tube Awareness Week!) it was finally replaced with a new tube! Here is my lovely new tube!

The tube that looks a yellow colour, plugged into the top leads to my jejunumm (that yellow colour is my feed running through it!) and the clear tube on the side, hooked up to the syringe is my gastric tube that I use to vent and drain.

Probably because of my Ehlers Danlos Syndrome (which affects collagen and the way the body holds itself together), the nerves and muscles in my digestive system do not respond and contract as they should. They produce sluggish and uncoordinated movements meaning that food cannot make it's way through my digestive system as it does in a healthy digestive system. This means that food sits inside my system, moves in the wrong direction and causes spasms or hold ups. This causes a lot of sickness and pain and can often leave me very dehydrated and undernourished. My feeding tube does a few things to help tackle these problems. Firstly, it bypasses the first section of my gut meaning that less of my gut has to handle the digestion. If I'm not putting food into the first part of my stomach and bowel then it is more likely to stay down and means that I don't vomit it or reflux it or drain it out my gastric tube. Secondly, my pump pushes formula through at a very slow and constant rate meaning that my gut doesn't have too much to deal with at once. Thirdly my gastric port drains and vents my stomach to stop me from being sick. But fourth and most importantly, it delivers the nutrition and hydration that I need to keep my body alive. Whilst it might seem and look a little bit scary, isn't that an incredible thing?

There are many different types of formula and it depends on the needs of the individual which one is used in which case. It's often a case of trial and error to find the ones that agree with you best. I think I've been through pretty much every feed even with separate feed providers to try and find one that works the best. The feed that I am on right now is called Vital 1.5 and looks like this:

Mine comes in the larger bottle, the smaller one is the drinkable version - yum!

If you want to read more about the type of feed I'm on and have a read about other types of enteral feed and what they are used for you can have a look here on the Abbott Nutrition Website! My Vital 1.5 feed contains 1.5 calories per 1ml of formula. I run my feed somewhere between 20mls per hour and 50mls per hour, depending on how I'm feeling. I run it all day, as much as I can but have to turn it off when it gets too painful or I'm feeling too sickly otherwise it just makes me sick and that is not the aim of the game! If I run it at 20mls an hour all day, without turning it off, I will get 720 calories. If I run it at 50mls an hour all day then I will get 1800 calories. My calorie intake varies so much from day to day. Vital is semi-elemental which means it is already partly digested making it gentler on my bowel and easier to absorb. It is also completely fibre free because fibre is not very good for most people with digestive tract impairments as it leaves a lot of residue in the digestive tract, meaning more work for the gut.

I've been tube feeding for 4 and a half years and had various different types of tube. My first tube was a nasograstric (NG) tube which went up my nose, down my throat, through my oesophagus and into my stomach. Then when that one made me poorly, I moved onto a nasojejunal (NJ) tube which went the same way as my NG tube but carried on into my jejunum in my small bowel. From the outside, both these tubes look pretty much the same! Here I am with my NG back in 2011:

These tubes are usually only used short term, either because a patient only needs short term nutritional therapy (for example, if they are going through chemotherapy or another treatment that suppresses the appetite), whilst someone waits to have a surgical tube fitted or even just to see if nutritional therapy works for them before committing to a surgical hole in their abdomen. Some people do have nasal tubes long term though because that works well/best for them or because surgery is too risky for them. Some people with NG tubes (into the stomach) do overnight or bolus feeds (large quick feeds) and put a tube in for the feed and then take it straight out afterwards. They do this on a daily basis so that they don't always have to have a tube hanging out their nose all the time. This isn't possible with NJ tubes (into the bowel) though as these need to be placed through xray or endoscopy (a 'remote control' guided camera tool down the throat and oesophagus).

I had a lot of problems with my nasal tubes as they gave me regular blisters in my throat which was the most painful thing ever. In the end, they were getting pulled and replaced on a weekly basis which was really disruptive whilst I was in the last year of my A-Levels!

My next tube was a PEG which went directly into my stomach through a stoma in my abdominal wall. My first tube was enormous but the best one I've ever had in terms of practicality. This was just for whilst the stoma healed and then it was replaced with a button style tube which is much smaller and discrete. With this tube, I fed over 10-12 hours overnight and for a time this worked really well for me. This meant that during the day I wasn't connected to anything and nobody could see my tube because it was hidden beneath my clothes.

The PEG tube started giving me reflux and making me sick through the night which meant that I had to start feeding in the day again. This wasn't really convenient because it was still giving me a degree of reflux and sickness, just to a lesser extent because I wasn't led down. So in July 2013, my PEG was replaced with a PEGJ, which is what I have now! This is the tube that I discussed earlier in the post which has two tubes inside it - one which exits into my stomach and one which exits into my small bowel. With this tube I went back to feeding overnight and for a time this worked really well. I gained a really healthy amount of weight and reached my highest BMI of 22! However in late 2014 I started to get really poorly again and I really struggled tolerating my feeds. I was getting a lot of pain and sickness and lost a lot of weight. I was admitted to hospital for a month whilst they tried to get my feed back up and going again. Unfortunately I have never really recovered from that and I now run my feed over 24 hours at as a high rate as my bowel will tolerate so that I can get as many calories as possible.

I think that is about everything I can tell you in terms of information about actual feeding tubes themselves. So why is it important to raise awareness of feeding tubes? I've heard people say that feeding tubes don't need awareness and that they aren't an illness and awareness won't save lives. That's true, it won't save lives but if you're a regular reader of my blog then you'll know how much I've struggled with ignorance and bad attitudes towards my tube and this is why I think it is so so important that the implications of living with a feeding tube are recognised. I think positive awareness about any issues that affect you is a good thing and those who say otherwise... well, some people always need something to moan about. Feeding tube awareness, in my eyes is positive and is very much needed.

How are people ever going to understand what my needs are if they don't understand what a feeding tube is? I would love nothing more than to never again have to explain to someone what my feeding tube is and what my needs are. I don't want this to sound like I don't want people to ask me questions - if you have a question ask away! I just really don't like having to justify myself. Questions are fine but don't challenge what my needs are. Don't challenge whether or not I need my tube. I do and that's that. Don't tell me I'll be fine doing something when I'm the one carrying the heavy bag and I'm the one that gets hurt when it gets pulled. I'm experienced at this and I found out the limits and risks of my feeding tube the hard way. My tube is at risk of being pulled everywhere I go and every time I move. My bag which carries my feed and my pump is at risk of getting bashed which means that the feed might explode or my pump might break and all of these things have happened to me. Where possible I like my feeding tube to be discrete. I don't like looking out of place and often people don't notice I have my tube. Unless you look carefully at the tube coming out from under my clothes, then I just look like I'm carrying a regular back pack and that suits me. I've briefly considered wearing a sign on my bag alerting people to be careful of it, but how much negative attention would that bring to me? I don't want that! I just want to be like everyone else. When people are polite and understanding, I am like everyone else.

Questions: 

There's also another aspect for awareness - that people find feeding tubes are really scary and they really aren't. I liken my stoma to an earring. It doesn't hurt any more unless it gets tugged and pulled - much the same as your ear piercings won't hurt unless I tug them or pull at them. Then they'll hurt! 'Does it hurt?' is the question that I get asked most often.

Another question I get asked a lot  is 'Can you feel stuff going in?' - If I plunge something quickly into my stomach I can feel it in the same was as you can feel taking a big drink. If I feed too fast I get pain in my bowel because it can't hold or process large volumes. If I've had too much feed I feel really sick, or am physically sick. When my pump whirrs can I feel each individual projection of 1 or 2mls going in? No.

'Can I see it?' Yes! Literally, just ask! You can't see my hole, all you can see is a button on top of my skin. I don't go round flashing it to people because people might not want to see it and I don't want to gross people out if they don't like that sort of thing. I'm not embarrassed about showing my feeding tube though and it probably looks way less scary than you imagine.

'Will you have to have it forever?' I don't know. Unless a miracle cure comes along to fix my bowel then yes. I'm always trying new drugs and treatments to try and improve things though.

'Can you eat?' Certain things, sometimes. Food does make me sick and so often when I'm out and about, I don't eat. I only eat at home when I'm near a bed and my toilet. I usually eat soft food or food that mushes up easily once I've chewed it because that's easier for my system to digest, and if it doesn't digest it's easier to drain it out of my gastric tube. I can't digest milk or wheat (celiac disease) and I'm allergic to onions and garlic so that limits things anyway. Onions and garlic are in pretty much everything so I can't eat anything ready made from the shop. I don't eat solid meats because they don't break down enough but I do have things with meat in them like chicken or beef stock. I mostly stick to liquids, toast, plain crisps, eggs and mash potato.

I can't think of any more questions right now, but I absolutely welcome you on here, Facebook, Twitter or in person to ask me anything that you might want to know about my feeding tube. No question is rude or silly! One of the aims of raising awareness is answering any niggling curiosities.

If you have made it this far, thank you so much for reading. I hope that I have helped you learn something new about feeding tubes.

The Happiness Project

I saw this idea on Jenny's blog just after Christmas or early on in the New Year and thought it was such a great idea. I've tried to find a good way of explaining this online and I just can't find anything so I'll try my best to use my own words and I'm maybe best just doing it and showing you as I go along.

Each month of the year has a 'theme' or a big main goal. You can pick different themes depending on what you want to achieve to make you happy each month. For mine, I tried to think of things that I already had planned each month and how I could use The Happiness Project to either incorporate them or help get me through things each month. Once you have your main theme or goal, you start picking little goals, tasks or pieces of advice to follow for that month. I have my themes and goals all written out, but I'm not going to put my year plan up all at once (not that I'm going to change it!). I'll talk about my big goal and little goals at the end of each month and then I'll say what my next months big goal is going to be without releasing the little goals that I've set until the end of that month.

Also, the Happiness Project have some books and journals that you can use if you visit:  http://gretchenrubin.com/bookstore/ - Becca bought me a journal a few years ago for my birthday and it's so cute and organised but I'm yet to start filling it in! I didn't start planning this until a few days into the New Year, so I will start using it next year for another Happiness Project. I might invest in one of the books as well at some point, to give me a bit of inspiration.

My January goal is unfortunately a bit boring but I thought it best come before anything else as it's probably the most important. The main goal was:

"Be healthy - look after your body"

The here's my little goals and how I got on with them:

• Be strict - I don't think I completely achieved this if I'm honest but I have been so much improved. I'm really bad at doing things and eating things that I'm not allowed. I'm always strict with onions and garlic and will never knowingly put anything with those in, in my mouth but in terms of my celiac and lactose intolerance I do sometimes have a little nibble. I've definitely had more restraint than usual this month and I've tried really hard but I've made the odd poor decision and still had nibblings of naughty food. It's really hard as well when I don't fancy anything but maybe I do fancy something I shouldn't be eating so sometimes I think "well, it's better than nothing and maybe it's giving me some calories." Since it usually just makes me ill though or ends up coming out of my drain... it isn't really calories. So although I've been better, I'm still working on 'being strict'. 
• Drink lots of fluids - I do struggle a little bit with drinking because it makes me sick if I have too many big volumes but I think I've definitely achieved this one. I'm quite a big tea drinker and so I've been trying my best to have a cup of tea on me as much as I can, and just keep sipping it all the time and taking breaks if I've gone too far. With having a broken tube I've had even less feed this month so this one has been double important!
• Packet check - Yes! I've definitely achieved this one even if I've still been a little bit naughty on occasion. I'm a bugger for not checking packets because I think if I don't check, it doesn't count as being naughty. I always check anything that might have onions or garlic in but I will turn a blind eye and not check the box if it might have wheat or dairy in. Checking packets more has lead to me being stricter though, as in my first little goal.
• Exercise - This one has been really tough on limited feed because I've had so little energy. I went in the swimming pool once with Little Meg and did do a few lengths but I was so dizzy when I got out and had to take a minute to sit on the side of the pool. Then I spent most of the time in the steam room. But... I've been going on a walk every night before bed with Hannah which has been good exercise, kept me moving and got me out the house when I hadn't really moved out of bed all day. So, with the limitations in place I still think I achieved this one as best as I could this month!
• Rest - I really struggle to discriminate between rest and being lazy. I also struggle a bit with mental rest - for example I might stay in bed, or sat at my desk all day so I'm not physically doing anything but I'll be doing loads of uni work or paper work which is quite heavy on the brain. Since I'm only in uni two half days a week, I have certainly done plenty more rest than I was doing when I was working and doing uni before I went into Salford. Also, since I'm only in uni two days a week and have no work commitments my sleep pattern has been a bit messed up so I've been working on that one. Sometimes I find that the more I sleep the more I want to sleep so I've been trying to set alarms even when I have nothing on just to wake me up early.
• Go to pilates - Pilates always made me feel better and I've been once with Hannah this month and I found it so tough. I just didn't have the energy and all my muscles are shaky because of my lack of nutrition. I'm going to say I achieved this one still because I still went to pilates and gave it my best shot. Once I've got a few more nutrients inside me I will be back on the pilates bandwagon.
• Take tablets - Improvement but still not great. I struggle with this for many reasons - I'm just not in a routine and I'm also always out or busy and don't get chance to take them (which is NOT an excuse). I've tried the little tablet organisers but they don't fit all my tablets in and so I just end up taking what's in them and then forgetting to take the rest. Can anyone recommend any where the compartments hold lots of tablets/fit big bazooka sized tablets in? But at the same time, aren't so enormous that they aren't portable? 
• Be honest - This one was partly about listening to my body - not telling myself I'm ok and not denying that I'm overdoing it because I want to do something. The other half was about being honest after I'd either overdone it or done something I know I shouldn't, rather than denying that I've ever done anything to make myself feel ill. For example I might eat something that I know I shouldn't and then later I'll be ill, but when someone asks me if I know what's caused it (or when I ask myself!) = 'No. no idea!' Also, at appointments I leave out details of not taking tablets and doing things wrong. Which is bad. So, I guess this one is about being a bit more accepting of everything and not being in denial? I've tried really hard to work on this one, and although I've done things wrong I've admitted them and not tried to hide them, and also, I've admitted them in this blog post!

That's all my goals for this month! Obviously not I'm not perfect but I'm not too disappointed because improvement is better than nothing and I'm going to try and continue to make progress in all these areas for the rest of the year (which reminds me - it's almost midday and I still haven't taken any tablets.)

My goal for February is going to be "Stay busy and be creative".

Thank you so much to all my hardy regulars and hello to loads of new readers. My last blog post had the biggest number of views out of all my posts which felt great because it was on a subject that means so much to me. I've also had an influx of follows since then which I'm putting down to the amount of awesome people who tweeted or re-tweeted it for me. Thank you! I have a couple more blog posts lined up I just need to get round to finishing them, and also an update on what's been going on with me because it has been quite a hectic month. Watch this space.

Lots of love to you all.

The battlefield of live music

I mentioned in my earlier blog post that I was hoping to put something together about accessibility for all at live music events, so here are some thoughts.

Going to watch live music is probably my favourite thing to do. I get such a buzz from experiencing music performed live and it gives me a greater appreciation and enjoyment for the music that I listen to. If I've seen a band or an artist live, every time I hear one of their songs on the radio or on my MP3 player it takes me right back there and I enjoy it ten times more than I did before I'd seen them. Enjoying live music isn't just about knowing the words to the songs or seeing famous people close up (when, before, they have only ever existed inside a speaker or on a screen). To me it's also about soaking up the atmosphere and being in a place with tens, hundreds or thousands of people all living the same moment, dancing to the same beat and singing the same lyrics all at the same time with the same love and enthusiasm for that band or piece of music.

Music is also really easy for anyone and absolutely everyone to enjoy. All you have to do is be there and take from it whatever you want. Whatever state I have been in, I have always been able to enjoy music whether it's listening to it, watching it on a screen or just reading the lyrics. There's never been any barriers to enjoying music. It isn't like playing a sport or taking up a hobby. You don't have to have energy or concentration or even spare time to enjoy music. It doesn't matter if you are in a wheelchair, if you are blind or deaf or can't speak, can't read, if you suffer with anxiety or depression or a chronic illness with every other restriction on your life that you can think of - music can always be enjoyed in some form.

The sad thing is when music is live there are unnecessary barriers for people with disabilities of all kinds. All they have to do is be there, and yet they can't even do that? When you think of accessibility, you probably think of wheelchair ramps, toilets and 'disabled areas'. But what use is a wheelchair ramp to a deaf person? What use is a disabled platform at the back of a venue to someone with only an immediate visual field or no visual field at all? And what use are these facilities anyway if a wheelchair can't fit down a corridor or inside the disabled toilet? What use is it having a wheelchair space right behind or within standing room - how are people in wheelchairs supposed to see?

I attended a very limited amount of gigs when I was a wheelchair user -  because I was too young for many of the venues and I wasn't well enough to go out most of the time anyway. But I did attend a few music events - I remember one in a bar and one in a theatre. The access to both of these for me as a person in a wheelchair was, so-so. The bar had very narrow walk ways and a few bumps and steps which were navigated. The theatre had ramps but the wheelchair space was a little out the way. I still enjoyed both gigs.

I haven't needed to use a wheelchair in several years now, which is great, and I started attending gigs like an able bodied person. This has meant I have been able to join in with the crowds and get really close to the front, which at first seemed great but I soon discovered it was very unsafe. I realised that being in a wheelchair was not the only disability affected by inaccessibility to music gigs - wheelchair users are the tip of the ice-berg. They are the disabled people that everyone can see and that everyone attempts to cater for, or at least make it seem like they are catering for them. Underneath that ice-berg, within the crowds of people at music gigs (or not to be seen at music gigs at all simply because it is not safe or possible) are people with additional needs - non-wheelchair users, deaf people, blind people, people with sensory disorders, epilepsy, people like me who carry tubes and machines, people with anxiety who can't face crowds, people with learning disabilities and so many other people with their own unique set of needs.

For anyone who doesn't know, I have complex medical needs. My Ehlers-Danlos Syndrome means that I am prone to frequent dislocations or subluxations at the slightest knock and also means I sometimes struggle being on my feet for too long. I also have a complex bowel disorder which means I have a surgical tube anchored into my stomach - this contains a drain, which empties my stomach, and a feeding tube which goes part way through my gut into my bowel on the inside and is attached to another long line on the outside (my giving set) which is attached to a pump and a litre of special formula in a back pack. The back pack alone can be heavy and hurts my back and shoulders, but it has a stand built in so that where possible I can put it down.

My condition also means I can get tired quite easily. I also spend long periods in hospital when I get sick, and the period around these admissions usually means that I am much less mobile that usual. Sometimes I can stand for the whole gig, but when I'm (more) ill I struggle to stand for longer than a few minutes. 

I found out the hard way that it is really unsafe, uncomfortable, painful and quite frankly terrifying to enter a crowd with these tubes. My tube is not invincible and it does not take much to rip it out of my stomach - this I have done, three times. None of these times have been through anything anywhere near as energetic as gig - I've done it once in my sleep, once whilst I getting up off my bed and once whilst I was getting up off the sofa. It really does not take much, just a quick pull and it rips straight out and requires a prompt trip to accident and emergency. During the festival I went to over the summer, it got really beaten and bloody and was very painful for about a month whilst it all healed. That was the first and last time I took it in a crowd. 

It's not just a lack of facilities that make a venue inaccessible or unsafe though. The other two culprits are awareness and attitude and I feel that these are even more brutal than a lack of accessibility. Accessible facilities may require expensive resources and complex building work, but awareness and attitude are completely free and the only resources they require are common sense and an open mind. Despite the fact that accessible facilities are expensive, most places attempt them which is more than can be said about the attitude of the staff that I have come across. In fact, in no other area of my life has my illness been met in such a demoralising manner as it has at music events non more so than when I saw The Vaccines, which was discussed in my previous post. 

I have no problem with being bag searched and I have no problem explaining what is inside the bag. Equality means being equal to those without disabilities and does not mean getting special privileges. If able bodied people are bag searched, then my pump bag must also get searched. It wouldn't be safe if venues were letting those with medical conditions get away with bag searches. But my feed bag is delicate and so I must tell them 'please be gentle with it' - if my feed bursts then I'll get very wet, sticky, smelly and will have to go home. I'll also drip all over the floor and they'll have to clean it up! They aren't always gentle with it because they probably just think I'm being an awkward customer. But being asked 'if you really need all this' and staring at it for an extended length of time is not necessary. 

Being made to explain time and time again to multiple members of staff why you're disabled and why you are deserving of being safe is also demoralising. I shouldn't have to prove myself as 'being disabled enough'. It often feels like I'm making a big fuss and I absolutely hate making a big fuss. I don't want special treatment, I just want to be treated like everyone else. I just want to be able to enjoy my favourite bands without being pulled apart. I don't want to put my health at risk just because people are ignorant and don't understand my condition. I am happy to educate but I am not happy to explain myself a dozen times to find out if someone else thinks I am worthy of a safe experience. This is what it feels like.

Having your disability questioned is not nice and it does feel very personal. My disability does not have wheels but I am not the only person ever to exist with a feeding tube - there are thousands of us in the UK - and I am not the only person with a non-wheelchair disability who would like to enjoy music. 

The staff at venues are not always the only ones to blame. The very sad thing is that discrimination sometimes comes from other music fans. Disabled people are your equals - they are sharing a passion with you at these events and it's the perfect opportunity to see past disability and focus on a common love. But people will stare at you when you are in a wheelchair. They will notice you and say nothing and stand right in front of you. They will push you out of the way because they can. They will take a seat (to stand on!) that you desperately need to take a break on. They will stare at your wires and lines and notice you are being pushed and take advantage of that, joining in to push you further back so that they can get a better view. People come out so selfish at live events. If you notice someone is struggling, help them - offer them a seat or make some room for them - be human. If you notice someone is stood in front of them, tell them to stand aside. Ask them if there is anything you can do, there might not be but they'll be glad you asked. If you can't do any of this, at the very least do not stare at their disability!

I'm really keen for people to understand that having a disability is not always visible and if someone is asking for special requirements that is not the same as special treatment. Having a disabled platform is a great start and it can cater for many disabilities outside of having a wheelchair. If someone asks for access to the disabled platform and they do not have a wheelchair, they are not faking or using their medical condition for special treatment. Chances are the disabled platform does not actually have the best views in the house believe it or not. But for someone like me, it can give protection from the crowd so that my lines don't get pulled, so that I can stand my bag down somewhere safe on the floor so I don't have to keep it on my back all night and so that I can sit down if I want. I cannot give a thorough experience of disabilities that I do not have, but I've been catching up with some friends who have been offering their own experience of disability at live events to help me write this post. I know that for a blind person a crowd can be very disorientating and the disabled platform is therefore a much safer and more comfortable place for them to enjoy the music. 

At the same time, having a disabled platform does not cater for all types of disabilities. I've also learned that deaf people can enjoy music through live signers and the vibrations of the music. I read this article last week about a deaf rapper who is taking on the music industry to prove that music is for everyone. There is an infinite number of unique disabilities with unique barriers all with a unique solution. We just need to have an open mind and perhaps be a bit creative so that we can include everyone in one of the most naturally accessible forms of entertainment there is.

The only barrier is attitude.

Please visit this appropriately named charity for excellent information and campaigns for accessibility for all at live music: www.attitudeiseverything.org.uk

Goodbye December, hello 2016

It's been two days short of a month since I've blogged. Part business, part laziness, part chill out and part going through a bit of a mood lull. But here I am, fresh out the 2016 portal.

I'm unsure what order December went in but I had some appointments, went out with friends, finished all my assignments did a bit of relaxing and was reunited with Sam. I also saw The Vaccines on Friday 4th December in Blackpool with Katie and Kodaline on Saturday 5th December with Irwin, Becca and Little Meg. My next post was going to be about some issues I have faced this year attending music events with medical needs/disability and so I was considering how to go about it. It will definitely still come I just need to write my piece.

We had quite a terrible experience at The Winter Gardens, Empress Ballroom in Blackpool where I was made to explain myself to about eight different members of staff, had my feed bag searched and was asked 'do you need all this?' and then, after I felt like I had already explained myself to everyone in the building, we were approached by a member of staff and told 'this area is only for disabled people.' I had initially considered posting on my blog the letter that I wrote in complaint to The Winter Gardens, but I think it's a little bit too personal and although writing it was necessary it was also quite demoralizing. Buttttt, I will be putting something together for a blog post to talk about this because going to live music is something that I love doing and there is no reason why my condition should be a barrier. I've been talking to a few of my disabled friends about their experiences with access and attitudes to try and learn a bit more about the range of issues disabled people face, outside of my own.

That said, The Vaccines were absolutely amazing and despite all that happened, it was the best live performance I have seen yet. They are such a good band; my absolute favourite. Katie and I had an excellent night and we both came out absolutely buzzing. So much so, within a week I'd booked to see them again in Cardiff with Stereophonics in June with my Dad. I'm so excited! There was the option of seated or standing room so we've gone seated and I haven't had to deal with accessibility facilities at all which makes things easier.

The days following The Vaccines I was fortunate enough to speak with a lovely man called Gideon from a charity called Attitude is Everything who work to improve facilities for people with barriers to live music. Gideon helped me to contact the appropriate people to ensure that my complaint was heard and dealt with and was really supportive in helping me sort things out and making me feel better about the whole situation. I'm hoping to get more involved with this charity in the new year because I think it's great and I'm now aware how much these sorts of campaigns are needed.

I also want to just mention that some people may be wondering where their Christmas cards got to. Unfortunately because of everything that has been going on this year Christmas cards just never got written. My Mum stopped sending Christmas cards a few years ago and now donates to charity what she would spend on cards/postage. Since I never got round to writing or sending cards I have made a donation to Attitude is Everything instead. I do hope everyone had a wonderful Christmas and a happy new year though and hopefully next year Christmas cards will resume as normal!

The following night we went to see Kodaline at Manchester Apollo and we had a much better experience on the disabled platform which was situated within good view of the stage for a change. We were really well looked after and Kodaline were also excellent. Everyone had a really good night and the atmosphere was brilliant. They did a pretty similar set to the one we saw at V-Fest but nobody minded because it was an excellent set and it brought back all the memories.

The following week my top student nurse Meggy B flew back from Uganda and we were reunited at Manchester Christmas markets which were good fun. I also didn't buy anything which is so great for me. The same day I got to see Gina and John again after about 5 years (?) at their little workshop in Afflecks. Gina and John taught me expressive arts (which I loved) and drama (which I was shit at) in my first timid year at college and they gave me a whole massive dose of confidence. John also taught me how to play guitar. It was so so lovely to see them both again and have a short catch up.

The next day I went to Chester markets with Laura which was my favourite thing ever. There is just never enough time in the world to do everything we need to do and talk about everything we need to say but our day was cute anyway and I bought some new earrings and a new hat at the market which was good. And I refrained from buying another woolly jumper... which was also good.

Two days later Sammy arrived back from the Isle of Man and within hours my tube fell out and carnage ensued from there and has continued to do so since then. Salford were ever... 'helpful' and even though I'm not under Wythenshawe any more, Radiology (genuinely, my favourite hospital people) sorted me out with a new tube the day after hearing about it. Unfortunately the new tube is leaking but I'm really so tired of dealing with it all so we'll just call 'tube' a swear word and I'll update when the problem is sorted. Until then I'm trying to distract myself and have a bit of fun anyway on hardly any nutrition.

My Uncle Howard and Auntie Pam were over as usual which is always the most fun part of Christmas. They'd been to South Africa this year and Uncle Howard outdid me by cage diving with Great Whites so it was so amazing to hear about that and just generally catch up on everything we'd all been up to this year.

Katie and Tom hosted an excellent New Year party in their beautiful new house with plenty of my favourite people and I had such a good night playing games, listening to good music and doing sparklers at midnight.

Thank you to everyone who has been there for me this year especially my three ace housemates who put up with me at my worst, Becca for being my BFF, Sam for being my bae, YOLO (especially Katie for having excellent taste in music and putting up with me at gigs), the English girls for helping me to not fail and for general loveliness, Rebecca for keeping me sane in Salford, obviously Laura for being the primary reason I have survived this far in life and many more people who don't read this blog. I'm so grateful for everyone. When things are shit I always feel loved and never lonely!

Hope you all have an excellent 2016! Many of you are overdue a good year and the rest of you deserve one!