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What it feels like to be the spanner in the works.

First off, this is not a dig at people in the NHS. There are good people in the NHS and they have done good things for me, but I just need to get this out. I think unless you live this life, you (fortunately) can't understand how completely demeaning it is to be the spanner in the works.

I've been having some problems for the past week or so, and I needed a simple x-ray to check that my tube was in place. Migrating feeding tubes are common. It happens to me about twice a year. You would think there would be measures or protocols in place. No. Absolutely not and as a patient I literally do not know where to turn any more. Here is what it feels like to be a regular patient in the NHS. Can you wear my shoes for a few minutes?

After a week with no relief (from reflux, sickness and mild dehydration) I went to my GP yesterday (feeling bold after a bank holiday!). At this moment in time, I am not a medical emergency. I am as healthy as I can be. There's no appointments (unsurprisingly), so I ask for a phone appointment and apparently, there's none of those either. I ask if I can leave a note on the system about my problem to see if he thinks I need an x-ray and if he can request one. Surrounded by a waiting room full of patients I try and discretely explain 'I have a feeding tube and I think it's become displaced' 'I'M SORRY WHAT'S THAT? YOU HAVE A LOCKED KNEE?' I have no other option and I am forced to shout my personal details, problems, life story and full medical history over the counter. I hope you enjoyed that people of unnamed general medical practice. Readers, if you are still wearing my shoes, you now feel like a complete spectacle.

I left and didn't hear anything for the rest of the day. I went out with Sam's Mum in the evening to see a show, and when I got back I found that I had a voice mail from my GP at 8pm in the evening. The voice mail informed me to go to the walk-in centre, or A&E as I needed an x-ray and it would probably be a few weeks before he could get to look at it himself. Nice. Those of you who are still questioning why there are long waits in emergency care centres should look no further than non-emergency cases like myself, who are advised by medical professionals to fill up said waiting rooms and waste the time of doctors/nurses, causing longer delays for people with very serious ailments.

Knowing that I wasn't an emergency, I went to the walk in centre at Ormskirk hospital where I have had an x-ray in the past on a displaced feeding tube. The waiting room was full to burst (probably with patients of GPs that cannot not be bothered) but I didn't wait too long before I was called to triage. Triage Nurse One initially told me that they didn't do x-rays at that hospital but the story did change slightly as time went on. I'm clearly far too complicated for Triage Nurse One, so she leaves the room and comes back with Triage Nurse Two. Triage Nurse Two (who very modestly announced herself as 'very skilled' several times) told me that, although she was very skilled she couldn't request abdominal x-rays. She told me that I needed to go to A&E (I'm still not even mildly clinically unwell, but I think the aim of the game is to make you clinically unwell and THEN you go to A&E, because then you aren't a time waster). I explained that Southport A&E always send me to Wythenshawe but that last time, when I cut the middle man and went straight to Wythenshawe I was told that Southport should be capable of dealing with these sorts of problems. The very skilled nurse, used some of her skills and phoned Southport A&E to tell them I would be on my way (If you're still in my shoes, do you feel like a pass the parcel yet? Spoiler: there's no prize!) who said that they wouldn't x-ray me because I was of 'child birthing age' - I SHIT YOU NOT. THIS IS WHAT SHE TOLD ME! I have never heard anything so unbelievably ridiculous. Therefore I just want to put an urgent PSA out to the people of this area - if you are of 'child birthing age' wrap yourself in cotton wool and do not take any unnecessary risks because if you decide to break a bone or rupture a spleen... Southport Hospital cannot help you. It's policy.

I'm sent away from Ormskirk walk-in centre with nothing. They can't help me. She's not skilled enough. She's very skilled but not skilled enough to look to her duty as a nurse and act in the best interest of her patients, as an advocate, practise safely, professionally and with appropriate team members (I haven't been a student nurse for three years, but I know the Nursing and Midwifery Council Code!). If she cannot treat my problem, it is her duty to find someone who can, to ensure the safety of her patient (me). As soon as I walk through that door and clerk in at the desk I am a patient in their care. To send me out the door with (potentially) a very serious problem and nowhere to turn, is not adhering to your agreement as a nurse.

So I leave, feeling PISSED OFF. I get it, I'm expensive. I cost the NHS a fortune with my treatment and investigations and inpatient stays. If you want to find someone who gets more out of our healthcare system than their taxes could ever pay then here I am. Lynch me. I'm hard work and complex and I make your day more stressful. You have a waiting room full of patients who the GP can't be arsed dealing with and here I am wasting your time. But now, I'm going to announce something completely selfish: my problems are more frustrating for me than they are for you. When I walk out that door you have eliminated a problem for yourself. But it's still there for me, and it's getting more serious as time goes on.

My next step was to email my dietician. She can't fix feeding tubes but she might offer some advice. That gets me an immediate out of office answer. My next step is to ring my consultants secretary. It rings twice and then redirects to voice mail - someone else who is too busy to deal with me. I get it, the NHS is busy. Without me in your day, it's already extremely stressful. So, I ring Kath* in interventional radiology. Kath* is an actual angel on earth and she is my very last hope. Kath* isn't in the office but she calls me back straight away, listens to me and despite the fact that she's not a medical professional (not a skilled nurse) she finds someone appropriate in order to sort the problem.

Interventional Radiology is an extremely busy department. The staff are the most wonderful people who are just as busy, if not even more busy than the rest of the departments in the hospital but they work so efficiently and have always accepted responsibility for me - at times, it probably hasn't even been theirs to accept. They are an example to every person and department who has ever claimed to be too busy, and passed me on to the next poor sod. Kath* called me back and asked me to come up to interventional radiology right away. Today, it was even busier because they were running with only one x-ray machine. We had to wait, but they sorted us all. Nobody was turned away.

The radiologists in interventional radiology are specialised and skilled. I needed a simple x-ray to find out if my tube was in the right place, but now I'm taking up the time of senior specialists who have better things to do than simple abdominal x-rays. If my tube is perfect and in the right place I have completely wasted their time.

My tube wasn't in the right place, it was in a complete and utter tangle in my stomach. The force from my duodenum was pushing it up into my oesophagus so no wonder I had been feeling like shit. When the image flashed up on the screen (moment of truth) it was saddening to see the state that I had been sent away in. It was reassuring that my trip there had been justified, but how can people in the field of care feel OK that they have dismissed a problem like this? They gave me no advice and nowhere to go. Without my tube, I would eventually die of malnourishment and dehydration. It would be one thing if the tube had looked slightly managable, but it looked like someone had tried to French plait Betty Spaghetti's hair. And it didn't matter to my GP, Ormskirk or Southport Hospital. As soon as I was out that door, my tangled tube was my own problem.

Trying to get my tube back in place was another nightmare with the guide-wire coiling up in my stomach and every time it went near my bowel it was met with a wave pushing it further back up into my oesophagus. Eventually with much perseverance and technique they managed to get it back into a good position. My tubes usually go in without *too* much push back from my crappy gut but with it misbehaving more this time I'm hoping so much that it stays in place. They managed to put the same tube back in which I'm glad about because it's really new and has worked well so far. I think (and hope) that it had just been pushed out of place with all the coughing that I've been doing. Hopefully the cough will go away soon though and this won't happen again.

I don't like to do too many angry rants on here. It's not how I aspire to be and it's not the aim of this blog. But I needed to get this off my chest and this is a place where I try to be honest and portray my life as it really is. I'm more angry about the attitudes of staff and their willingness to help me in a crisis. What goes around comes around and undoubtedly they will need care from a similar service at some point in their lives. Perhaps when it's their turn they won't find it so easy.



...you can take my shoes off now. I'm going to do my dissertation and for once, it will be less stressful than the rest of my day!

How to be a Zebra in the big bad Northern Ireland (...and Ireland)

Another post going up a little bit later than expected but why break the habit of a life-time? I've spent most of the time since I got back from Northern Ireland recovering because I've been so pooped (we all have!) but I'm starting to get back to 'normal' now. I'm not all that practised at travel style 'what I've been up to' blog writing, so sorry in advance if this isnt my best piece of work.

We flew from Liverpool John Lennon to Belfast International on 10/3. It was a busy day because I had uni in the morning and our flight was at 6pm. I went into uni early to print the boarding passes off in the library and realised my name was spelled wrong on mine, so I had a mad panic to get it fixed. I headed to lecture and then half way through lecture, on my break I took out the boarding passes to check again that everything was right and realised that our return flights were coming back on the wrong day! Cue panicked texts to the girls. Irwin was in a meeting with her tutor and I was stuck in uni and so poor Becca had to just about sob down the line to EasyJet trying to get them sorted. Unfortunately there was nothing EasyJet could do and it was cheaper to rebook a new flight than to transfer. I don't know what we would have done without Becca on that morning.

We were all super stressed when we got to the airport after our morning of disaster. I was already really worked up because I was worried about flying and so we sat in the departure lounge looking like wet weekends watching the planes take off. I've probably flown about 10 times in my lifetime but the last couple of times I've not enjoyed - flight sickness in Portugal when I was 14 and blackouts when we went to France a couple of years ago. My consultant gave me some tablets to take to try and boost my blood pressure and also gave me a note to keep my feed on during the flight to Turkey to maintain hydration. I didn't need to keep it on for Belfast because it was only a 50 minute flight so I just took the tablets. The flight was actually fine and I didn't get travel sick or faint so I feel much better about going to Turkey. Hopefully it will go as smoothly.

The lights of Belfast as we were coming in to land.

We landed in Belfast and Irwin's Dad picked us up from the airport and by some miracle managed to fit us and all of our crap into his car. We went to go and meet Irwin's famous Granny that night and she did not disappoint - what a hoot! We also learned that Granny stays up later than us which suggests we really need to start sorting our lives out.

On day two (Friday), we went to the Titanic Quarter in Belfast and went round the Titanic museum. This is the only attraction we did, or that I have ever done in Belfast so I can't really compare it but if you're going I highly recommend it. It's absolutely massive - loads of artefacts, loads of models and interactive sections and there's even a cable car ride. It's on four floors and the top ones have some really good views out onto the docks. I think we spent nearly three hours there but we could easily have spent much longer. It was really accessible for Becca, really well laid out and not too crowded for me. The lifts were really easy to find and brought you out the same place as the stairs and there were toilets all the way round too. All the attractions were suitable for Becca, there was nothing that either of us had to miss out on. When we went on the cable cars they offered her an accessible car that the wheelchair could go straight into which is really great for anyone who struggles to transfer. Becca chose to transfer and since the ride finished at a different place to where we got on they had her chair ready and waiting for us when we got off. Irwin was being a big baby about getting on the cable cars because she's scared of heights, much to the amusement of the ride operator who was absolutely loving her. He was saying to her 'This is not a rollercoaster you know?!' It was the tamest thing in the world and she was glad she came on. For reference, if you're afraid of heights it's about as high as the first floor of a house. If Irwin can do it anyone can (and she'll call me 'cheeky wee scoot' for saying that). I was a bit sick at the Titanic Quarters which made it hard work to walk round - those frequent toilets were really handy for someone like me that day!

On the extremely high and white knuckle inducing cable car ride

First class cabin on the Titanic

You jump, I jump ❤

Blown away at an ACTUAL hologram.

View of the docks from the 4th floor.

Undersea explorer robot, like the one they used to discover the Titanic.

Put a wet suit on come on come on ♬

Hello Sailor!

On day three (Saturday) we went up to Giant's Causeway which was an absolute beaut. We managed to time it on some sort of open day and it was free entry, which was really good. It would have been £9 each otherwise which would have been nearly £50 for all of us! At the start they have a little gift shop and cafe and an indoor mini-museum (which had a section on sharks for me!). I bought a hat for Turkey, a sew on badge for my backpack and some shortbreads for presents. We got audio guides for walking down the causeway which were really good. As you walk down there are numbered sign posts and you can press the buttons on the audio guides that match and it tells you what to look out for and little stories on each point. I don't really think the pictures can do Giant's Causeway any justice so if you get the chance, then go. It was downhill on the way out onto the causeway and then uphill on the way back, so we got the (free) Shuttle Bus back up. We could only go so far with the wheelchair but I think we went most of the way round it.

Basking shark in the Giant's Causeway museum. Cooooooool.

After we'd been to Giant's Causeway we drove up to Portrush, to Irwin's favourite restaurant and then to Irwin's favourite ice-cream parlour (cup of tea for me!). Irwin and Becca had the biggest ice-cream sundae's that my eyes have ever seen.

Beach at Portrush - some Game of Thrones was filmed here.

Beautiful Portrush

Day 4 was Sunday and we spent most of the day in the car driving down to Dublin. Never underestimate the capacity of a Renault Clio. There were five of us, five over night bags (Becca brings the kitchen sink and more) and Becca's wheelchair. I don't even know how the five of us fit in the car, never mind all of our crap. As the person sat in the middle in the back it was the most uncomfortable journey ever but the car tunes got us through. I called a service station stop after about two hours because my legs and ass felt like they were being gnawed away by sharks.

Our apartment was really snazzy - self catered, two bedrooms and an ensuit. It was situated next to the Quays, we had a balcony and we were on the fourth floor. It was also really beautiful weather both days that we were there. We arrived about an hour before the concert started so we tried to have a mini rest to revive ourselves and then we walked up to the 3Arena which was just a short walk from where we were staying. The line-up was Maddie and Tae (who, I'd never hear of), Sam Hunt (who we were 100% there to see), Little Big Town and Carrie Underwood. We got to the arena part way through Maddie and Tae's set and they were actually quite good. Then Sam Hunt came on and we got pretty embarrasingly excited (Irwin especially). He was absolutely brilliant, the crowd were buzzing and he did all our favourites. Irwin was bouncing so hard the balcony was shaking - I thought she was going to get escorted away (or dart tranquillised). I was too pooped by this point to dance so I'm really glad we had seats (I can't listen to myself, why am I such a Nan?) but I was still absolutely buzzing. I don't think Sam Hunt stayed on that long, which was a shame but he was 10/10 the whole time. Little Big Town seemed like they were on for an absolute lifetime, but they were good fun. Then finally Carrie Underwood hit the stage as the headline act and she was also excellent! She has such an amazing voice and the live band (including violin and harmonica!) were on point. It was such a great night and I would definitely do it again next year! Country 2 Country, you were fantastic!

The accessibility arrangements were probably the best that I have ever experienced at a live event. Thumbs up to the 3Arena. There wasn't really a bad view in the house anyway as the venue wasn't that big and it was a good shape. We were slightly to the right and on a tier in between the stalls and tier one. It was really easy to get to and there was loads of allocated slots for disabled people. There was also quite a few people with non-wheelchair disabilities so it was good to see them being included in the accessibility arrangements. I also noticed that disabled party sizes were quite big too. Often venues limit party size to 2 or 3 people 'per disabled person' to create more space for more disabled people but it's a bit sad if you're disabled and have to choose which two friends to sit with when able bodied people can attend in groups as large as they want. Solution? Allocate more room for disabled people and their friends! This didn't seem to be the case at the 3Arena though and there was still spaces left over. At the end of the night several of the stewards collected all the people in the disabled section and escorted us out in an enormous lift so that we didn't get stuck in the crowds. How awesome is that? It was absolutely perfect for me! I've never seen a smoother operation. Thank you again, 3Arena!

Monday was another car ride back up to Northern Ireland and we scheduled in stops and busted out some squashed car dance moves to help us through the journey. Irwin picked up a 4 disc 'music from the movies' album at the first service station and that went down an absolute treat. Once back at Irwin's we all curled up in front of the fire and watched the Titanic, which we'd been trying to squeeze in since the museum. We were all very sleepy but managed to see Irwin's Granny again before bed.

The Facebook and Google offices in Dublin

Beautiful Bord Gais Energy Theatre on the Quays.

We set early alarms on Tuesday so that we could go round the farms (Irwin and Granny both live on farms!) before we left to fly back to Liverpool. Irwin gave us a ride on the back of the quad and then Becca had a go on the quad and nearly gave everyone a heart attack when she decided to pull some involuntary wheelies. All I'm saying is... I'm glad I was on camera duty. The next collection of photos is extremely heavy on the cows. I hope you like cows.

Irwin's Mum dropped us off at the airport and thankfully we were all feeling much calmer this time round. We had a mooch round the airport and me and Becca went full tourist and bought matching Belfast t-shirts. We sat in the window and watched the planes go up the runway again and it was really sunny so it all looked super pretty and got me in the mood for a holiday.

I look so tired - sorry if I scare you.

This exciting artefact took us on and off the plane. On the way out the stewards offered to meet us on the plane with Becca and I was like, hell no - I want a go! This was taken out the plane window as it was coming up to collect us at Liverpool.

Inside the doodah.

That's it. We landed back in Liverpool and Becca's Dad picked us all up from the airport because he is an angel - thank you Poppa H! We have all been in recovery mode ever since. I've felt absolutely haggard but I'm coming out the other side now.

Happy Easter Everybody!

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.