Home!

As most of you know, I'm now home and have been home for over a week! :) I'm really glad to be home - I'm still not feeling great, but I'd rather be feeling crap at home than feeling crap in hospital.

I went 'back' to uni yesterday just for an hour - for lecture and then to meet with my dissertation supervisors. Saying that, I'm not going to be going back until after Christmas now because I'm all finished!

We went to see Noel Fielding last week and he was hilarious. Like, if you are into his sort of stuff then definitely go and see it. I'm not sure if it was just because I was there or if it was because it was really funny anyway but I thought it was the funniest thing he'd done yet. There was a few of the old classic Noel gags but lots of really funny and creative new stuff as well. We were in the small theatre of the guild hall and it was so small and intimate which made it so special and he was able to interact with pretty much the whole audience. I was worried our seats were going to be rubbish but it was so small that there weren't any rubbish seats. There was about 8 people sat in the little section where we were and he kept joking that we were in the bum seats because we were at the side - but it's the best seats I've ever had to anything! At one point he actually sat on the seat in front of me! It was such a good night and even Mum (who thinks she's far too mature for that sort of humour!) belly laughed most of the way through.

I've been hammering all my uni work so that I can try and start Christmas as soon as possible! Saying that - all my Christmas shopping is done! I spent last night polishing and submitting assignments and I am going to spend today doing the same. I have two more to polish, one completed one to submit and a further assignment to complete and submit. I'm getting there!

On Monday, Irwin and Becca came round for a day of Christmassyness. I made my corned beef hash for them and we (eventually!) made a gingerbread house. It fell down three times and I did not think we were going to get there, but my girls are so stubborn and carried on grafting that house of sweets whilst I texted into Jordan North telling him what a hard life we were having! Next thing, Jordan is on the phone asking us how it's going and I a was so shocked that he called that I just about had a breakdown over the phone - how embarrassing! I genuinely did not know what was going on! He said he was going to play the call on the radio but he didn't so that was probably for the best! It was a very exciting part of our day though because I listen to Jordan's home run every day, loyally as routine, because he's so funny and everyone from Lancashire obviously loves him. Sam doesn't. Sam thinks I fancy Jordan, and hates him.

Then... on Tuesday I went for my barium. It went way better than expected! They gave me half a cup of barium for upper GI and then they were going to put gastrograffin down my tube for the rest of it, however I tolerated sipping most of the barium with only a little bit of sickness after the first couple of cups so I didn't need any gastrograffin! I also got to go and see Becs afterwards on the ward which was nice, because I miss seeing her face every day! I'm in quite a bit of pain from the barium now so I'm flushing my tube with as much water as I can tolerate and drinking as much tea as I can manage (latter is such a chore! ;)).

Then that takes us up to yesterday and today :) I don't really have much to update in medical terms. I am seeing my new consultant on 7th January and I am still waiting for the 7 day transit study. I don't think that it will be done before I see him in clinic which is a shame because it will probably cause another big delay in getting things sorted. Really not happy with the awful service at Salford and wish that I could still be under Wythenshawe. Thank goodness I'm home!

Hopefully I will get a bit of normality back now. I won't be returning to work at the hospital sadly as they have stopped using agency staff but hopefully in the new year I can find another job, or go back to the care agency. For now though, I'm building up my strength, doing some things I enjoy (once my uni work is done!) and enjoying Christmas!

Oh, also - I did not get offered a place on Schools Direct at University of Cumbria after all the time I spent preparing for it! So I have accepted a place at Edge Hill, which I had decided to do anyway in the end, even before my rejection. This alleviates all the stress I was having about where I was going with my life. I just need to pass my skills tests now before July!

A better day :)

I definitely don't want to leave that last post hanging at the top, but it was how I felt and the full truth of what has been going on.

After completely resting my bowel I managed a better night sleep last night and feel better in myself for finally getting some sleep. Feed has gone back on at 20mls an hour today and it's killing me again but yesterday I needed sleep more than feed and today I need feed more than sleep (just about!) Not that 20mls an hour is going to give me too many calories.

I got the news yesterday afternoon that my tube was in the right place - there's still a slight concern over whether or not it has split inside after it blocked last week. But I will just go with it for now and if it causes any more (more than usual!) problems we will pursue it further. Hopefully it is fine though! If it hasn't split I can only wonder why on earth my bowel has a pH level of 3! Anyway it's not a priority concern right now.

Yesterday afternoon Mel surprised me with a lovely card of messages and a massive shark from the English girls at uni, so that was a very much needed pick me up. I'm really very lucky to have so many people supporting me and keeping my spirits up all the time :) I've had loads of visitors, cards, messages on Facebook, emails and texts and I'm so grateful for all of them. I can't tell you how wonderful it feels to know that so many people take time out of their day to think of me. I can honestly say that what ever crap has been happening I have never felt lonely thanks to all of you :) You are all such great people :)

Struggling as I was, I managed to get a bit of uni work done yesterday and caught up on all my lectures and then today I've done quite a bit of work on my dissertation. Still lots to do - it never ends!

I had a visit from another consultant today who was very knowledgeable in Enteric Neuropathy and really lovely to talk to. He listened to me, explained things for about an hour and put together a plan which - assuming it all goes ahead and none of the others come and sit on it again - has made me feel much better about things. Fingers crossed now that we can get some sort of plan together that improves things. He wants to send me for a full 7 day transit study and put some of my tests together to suggest that certain parts of my bowel may be worse off than other parts which could still have some decent useful function in them. If this is the case and he can pin these parts down in the transit study then this opens up some more positive options for me! However, there is obviously still the chance that my whole gut is affected equally, in which case... I guess we'll just take it from there if that is the case. There's a bit of hope though and that is more than we have had in a very long time.

I'm going to be going home overnight tomorrow ready for my interview at 8.30am on Friday morning! There has been so much more prep work for this one - it's all I've been doing all week! I have to write a short essay on a reading that we have been given, present a short literacy task to year 5 students (9-10 year olds) and then have an interview. Hopefully get the scary stuff out the way first and then chill myself out for the interview - I think that's quite a horrible thing to put interviewees through!

I've got lots of fun stuff coming up over the next few weeks so I'm really hoping that I am well enough and allowed out for them. I'm EXTREMELY excited that I've got tickets to go and see Noel Fielding on 28th November in Preston. Like, I am majorly freaking out about this! I've been a massive fan of Noel Fielding since I was about 12, and every live show that The Boosh, or Noel has done himself I've been too ill to go to. He hasn't done a UK tour in ages so I was so excited when he announced it. I'm not entirely sure our seats are going to be that brilliant but I don't care, as long as I am there it's going to be so great! I am literally crossing everything that I can tick this one off the list!

Then the week after I have Kodaline with Meg, Irwin and Becca at Manchester Apollo as well as The Vaccines in Blackpool with Katie Brown. I'm not really sure how I'm going to wangle these dates off so I will have to see the best way to tackle it at the time but we've had tickets for quite a while.

Thanks again for all your love yesterday - here's a better post for the top of my blog. Hoping things go in the right direction now and that even if I don't get the best results over the coming weeks that we can still have some sort of a plan going on.

Angry Rant

I never intended to do anything like this on my blog, but what the hell, it's my blog and I think I've absolutely lost the plot now anyway.

If you ever get the 'opportunity' to recieve the 'help' from this specialist centre. Don't. Run for the fucking hills and don't look back.

Here I am, two and a half weeks, in more pain from the tests and drugs they've put me on with absolutely no plan but to sit here and keep getting worse. I'm exhausted, I haven't had any sleep in about a week because I've just been in too much pain. I've been working my ass off trying to get all my work done for uni and my interview and I'm not really sure what for because what is the point in trying to enjoy a life like this? I always fought to live my life because I thought it was absolutely worth it to achieve things but I'm really struggling to understand why it's worth it at the moment because I feel like this is the last place to end up - one of the only two specialist centres in the country and they can't help me. I don't have that little bit of hope any more.

The plan for admission was to trial TPN - which I have put off considering for a whole year, since I got sick last year because it's an awful thing to end up on. Eventually I said 'let's try this!' and then I came here and they fannied about. One person says it's the right thing to do, another person says it's the wrong thing to do and the third person says you're screwed if you do and you're screwed if you don't. I don't want to go on TPN. Ever.

So the vague decision was made this morning to probably not do TPN. But with no other fucking plan but to sit here and wait to be seen by someone else who 'has a busy diary'. I'm in agony and I have no pain relief. I feel sick and I can't tolerate my feed. On Friday, there was suspicion that my jej extension had migrated back into my stomach so I was on reduced feeding over the weekend. Yesterday I had an x-ray to check its position and I haven't heard the results but I don't really care any more since I'm not tolerating my feed anyway. I didn't bother to ask at ward round. I don't care and I don't trust anyone here.

I just want to come home, and at the moment I'm contemplating self discharge because they have done nothing for me here but make me hurt and put me in a bad mood.

Sorry this is an awful update but this is how things are at the moment.

Welcome to Salford Royal!

I've been meaning to blog all week but just haven't really got round to it. People do often assume that I get bored when I'm in hospital. I get bored of being here and want a change of scenery but I'm still always busy with uni work, visitors and presently UCAS! I'm rarely bored whilst I'm in hospital actually.

So, I've been here a week today and I thought it's best time I pop up a post before I get out of sync with what has been happening. My last post was quite a negative one, and I'm not all that pleased that it's been sat at the top of my blog for anyone new who might have been reading. I'd like this one to be better with more fun things but sadly no fun or excitement!

Last time I was HUGELY stressed with my PGCE plans which were crumbling around me and I had a right emotional roller coaster of a time with it but I'm pleased to say that I have been accepted onto a PGCE course at Edge Hill pending my degree and I've also applied for Schools Direct at Preston Alliance/University of Cumbria and have been offered an interview in a couple of weeks so fingers crossed that I can get some leave time for that.

I was still really struggling with feeling poorly and so I cancelled all my plans for that coming week - horse riding with the girls and going down south to see Jenny and my Auntie however at last minute I decided to go and see The Wombats with Katie on the Friday night because I have wanted to see them live for AGES. We managed to get our tickets changed to disabled which got us a great view on the balcony out of the crowd and also had plenty of seats but unfortunately this area was also the VIP area and the people who had paid for VIP tickets (and either didn't know it was also disabled or didn't care) were taking up all the seats or stood on them so we struggled a bit when I needed to sit down. Whether for myself or for Becca I've never come across a particularly good arrangement for disabled people at any venues which I think is a really great shame. The facilities are either so far out the way that you can't see anything or in a really unsuitable place.

On Tuesday I had an appointment at Salford Royal intestinal failure clinic which was fairly straight forward. I was weighed, spoke to the dietician, had my bloods done and saw the consultant all very quickly and without anyone having too much to say and then came home.

I had my interview at Edge Hill on the following Wednesday which all went very well with the exception of the science skills test which was an absolute dive bomb. I need to seriously knuckle down and brush up on my science!

On Thursday I had a phone call from the intestinal failure unit saying that they wanted to bring me in the next day and so as I was about to head out to an appointment in Manchester, I had an absolute mad rush trying to do my washing, start and finish my UCAS application, tie up bits of uni work, email tutors, ring work to let them know and do as much of my to do list as possible.

So that is where I have been for the last week. People keep asking me how I'm doing, what I'm doing and I'm not really entirely sure what to say or what the plan is yet. I've been down and had a small bowel bacterial overgrowth test which was negative and also a tubogram which showed my tube was in a reasonable position and I'm waiting for a barium. I'm certainly on a downward spiral anyway at the moment so my weight has dropped further since I've been in. I'd managed to get up to 56kg between my last appointment at clinic in July and the appointment last week, but by the time I was weighed in clinic last week I was back down to 53kg again (which I was in July) and I've since dropped to 52kg in the last week. The last two days I've felt really poorly with bad pain, nausea and as a result a complete lack of sleep. However I had a better night last night and feel a bit better today so I've managed to get a bit of uni work done.

I've also been seen by the pain team who were nice. There are always two ways professionals approach my pain. They either say 'don't take pain killers because they will make your bowel worse' or they say 'you can't be in that much pain if you won't take your pain killers' and try and bombard me with heavy opiates. It's quite frustrating. There's also another cluster of people who want to try things like anti-epileptic drugs or anti-depressants for their supposed 'pain killing' properties. I've done my time with these drugs and they don't help or agree with me. They also said that it might be that my bowel doesn't absorb them anyway but that it doesn't necessarily stop them from slowing my bowel down. So for the time being, it's paracetamol only still. It's not great as it doesn't do anything for my pain but I'd rather be in pain that be making my bowel worse, when it's my bowel that's causing the pain. They said they'd still like to follow me in clinic with my pain so I will be doing that when I come out.

I've started a new tablet for absorption as I'm slightly low in vit d and calcium but other than that there really is not a huge amount that has happened so I don't have too many answers to hows it going and what's going on. The only thing on the cards now is my barium which we will await! Feel a bit frustrated with how slow things are moving because obviously I want to get back to my life but unfortunately I just have to be patient (literally!).

Thanks to all the usual lovelies for all your support - the cards you send, the visits or the lovely comments and messages on Facebook. I really appreciate everyone who takes the time out of their day to think of me like that and there are always so many of you!

Black with white stripes? Or white with black stripes?

This post is going to be a little different to my usual posts. I didn't just start this blog to talk about all the fun I have in my life. I wanted to show the good and the bad. My illness is there, all the time, whether I'm having fun or not. The pain and discomfort is there all the time, 100%. There will be a part of every day where it is unbearable. Sometimes this may only last an hour or so. Sometimes the pain will come in a wave when I'm sat in a lecture or when I'm out with friends, and I'll just have to ride it out. Then it will pass and I'll be fine until the next wave comes. Sometimes it will last all day and that's that.

It's not all a good time. I intended to write this blog to show the good and the bad, but what I definitely don't want to do, is make every single post about what a hard life I have - because that certainly isn't the case. I do, however want to make it honest - like everyone, my life is an equal mix of good and bad - they're my stripes! I'm either white with black stripes, or black with white stripes.

When I've done a load of fun stuff, I don't really want to kill that post by talking about how ill I am in - I do, seem to end all the posts with a brief moan about how tired I am, and that's true!

I felt like today was a good time to blog a little about 'the ugly' because I'm tired, and not feeling the best right now and just feel like I'm struggling to keep my head above water.

I spent most of last week in pain, throwing up and keeping nothing down which wasn't what I needed. Somehow, I didn't miss any uni or work. On Thursday night, I came downstairs, with a puke bag, hot water bottle and blanket so that I didn't wake Samuel up and I could have a bit of space just to be ill. When Sam came down in the morning I let him get ready for uni with absolutely no plans of getting off the sofa. Then I remembered how much I do not get Forensic Linguistics, and that I'd already missed last weeks lecture to attend the PORT day, so I whizzed some jeans and a hoody on over my pyjamas and headed out the house. On Friday night I had to dose myself up, and get the doctor to prescribe me additional painkillers which knocked me high. Things have started to settle down a little bit since then so hopefully this week will be nicer.

On Thursday, I realised that PGCE applications are fast approaching and I don't have my primary experience sorted yet, which put me in a bit of a breakdown over my future. I planned to get my primary classroom experience sorted last year, but then I ended up focusing on my health after my admission last year. That took a while to build up my stamina again, whilst adapting to the worsened affects of my illness. Then as soon as I was able, I had to go back to work to top up my savings for the next academic year. I'm so worried about my future - I've already been pushed back two years because of my health and now I'm going to end up back another year.

This year I get less student finance, because apparently third years don't have the same living costs, so that's meant that I've had to work two days a week. I was really lucky to get offered those two days at work, because it's a job that I do enjoy, know well and I'm really grateful for that opportunity when I need it. But it's really tiring doing a job in Blackpool whilst living in Ormskirk. I initially started by staying at home for those two nights, but the last two weeks I've decided to commute because living out of a bag is just stressful. I have all my uni work here in Ormskirk - it's too much to carry back and forth every week - and so by living here I can do work on Mondays and Tuesdays. I know many people work jobs whilst at uni, but many people don't have to commute, and many people don't have this illness, so those things just make it a little harder.

Then I'm in uni on Wednesdays and Fridays, leaving Thursdays and weekends free - but they're never free, they're always busy as hell - to get my work done, attend appointments and catch up on the rest of life. And rest. On top of that, my Mum is moving house and I have all my stuff to go home and pack and not a single day free to go home and pack it.

I just feel like there aren't enough hours in the day. I have loads of things planned all the time - fun things and compulsory things - I'm feeling pretty drained from it all.

I'm really wanting to just take a step out of life for a week and hibernate so that I can have enough energy to face these busy full weeks.

I'm hoping that this opportunity to try TPN comes around soon, and gives me a little more energy to cope with all that's happening. I know my calorie intake is absolutely crap at the moment and that is probably contributing to my poor energy levels. I'm feeling overwhelmed at the prospect of trying to keep up with uni work in hospital again, and how I'm going to cope with being out of work whilst I'm in hospital - but I've done it before and so I know I can do it. It's just additional worries.

I was supposed to have a meeting with my dissertation supervisors this afternoon, so I took the afternoon off work. But it got cancelled at the last minute so I drove back to uni and just climbed into bed and remained there for the rest of the day.

Not looking for sympathy - I just want to blog about all aspects of my life with stripes, and this is how I feel right now.

On a positive, on Thursday, I went to go and see Hamlet (with the Cumberbatch!) live streamed from the Barbican at the Vue  - which was great! If you get the chance to go and see it, please do because it's amazing.

Back to those busy week and this week I am going horse riding on Thursday night - which the girls got me for my birthday, then to see The Wombats in Liverpool on Friday night with Katie, and then I'm driving down to Hampshire on Saturday to attend Jenny's Mad Hatters tea party and see my Auntie and Uncle in Woking.

I wouldn't have it any other way - I'm just crossing my fingers that I can manage it all. I don't really see any time off/rest time on the horizon. Sometimes, I like to do 'just holding on until... and then I can rest' but I don't really have anything like that coming up in the forseeable future so I just have to keep rolling with it for as long as I can.

Blogging is good therapy.

Bed time, I'm up at 6am for the long drive to work!

The number one dream: Swimming with Sharks

I have no idea how to do this post justice or what words to write here. Saturday was quite literally the best day of my life! Everyone has one thing that they want to do above all else. If you could wish for one thing, what would it be? I'm incredibly lucky, because on Saturday mine came true and I swam with sharks.

When I was 14, and spent all of my time in bed or hospital feeling extremely poorly I made a list of things that I wanted to do. It was sort of the opposite of a bucket list because it was things that I really wanted to get better and do. Some of the things on my list were as simple as going out with friends and I also had going on holiday, learning to walk again, getting my GCSE's, A-Levels, a degree (nearly there!), skydiving, going to Blue Planet. At the very top of my list was swimming with sharks. It was my absolute dream because I loved sharks. I would watch documentaries and youtube videos and read magazines all day and through the night when I was unwell. It started as something therapeutic, because, you know, sea is relaxing. And then just developed into a real interest and love for sharks. I joined the Sharks Trust and loads of people sent me videos of their captures swimming with all different kinds of sharks and relayed their stories to me and I couldn't get enough. I would always talk about swimming with them and people would say 'you wouldn't really do it though would you? Would you really do it?' 

Yes - I would really do it and I would give my left leg (to the shark, obviously) to do it. If I could go back to my(younger)self, struggling through a rough night of being ill, with sharks on my TV, dosing in and out and show myself what happened on Saturday - I don't even know what I would have done.

It was touch and go up to the last minute, as head and safety decided to enter the occasion only four days before and request a doctors note if it were to go ahead. The lovely Steve, our favourite shark keeper, kept us in an 'unofficial slot' and said it was ours whether we used it or not, and if not he'd open up a new slot as soon as we had the go ahead. He was an absolute knight in shining armour and we wouldn't have even been in that tank if it wasn't for all his efforts. So, at the final hour Dr Jones and his secretary got all the relevant paperwork signed and whizzed it over to us in time for the dive! As soon as that was through, I could relax and look forward.

I was pretty tired the night before as I'd been at the PORT charity day but I was SO excited that I still struggled to sleep all night. The same goes for nights since - my brain has just been too buzzing from it all to switch off. We arrived nice and early, because... we were ready nice and early, obviously and went for a look round the Sealife Centre before our dive. It was really busy, as it was when we did our feed a few weeks ago, and so it was difficult to get round it properly. It's always busy this time of year because the illuminations are on, and with it being cold people who holiday in Blackpool want to do indoorsy things.

Anyway, we met Steve 15 minutes before we were due in, changed into our wetsuits and then headed through to the enclosure. I don't think I have ever climbed into cold water so quickly. The whole experience went so quick but I was absolutely ecstatic from start to finish. I wish I could breathe underwater because coming up for air was such a distraction. I was rubbish at holding my breath and got out of breath really quickly which meant I had to catch my breath before going down again but oh my word, what an incredible experience I had. Seeing the sharks so close - they came right up to the net - was absolutely breathtaking (y'know, if I wasn't already holding my breath). Seeing them up close is such a different experience to seeing them through the glass. The feel of them brushing past and the waves and vibrations of them being right there, in the same water as me. It was so amazing. Boris the bowmouth shark was absolutely enormous and extremely curious. I think seeing him up close was my favourite part, and I think I'm going to say the bowmouth might be my new favourite shark. Most people only get 15 minutes on the swimming experience but Steve had given us a special slot and we were allowed to stay in for 40 minutes! I really don't know where the time went - it was the most amazing 40 minutes of my life. All that I imagined and more and I am even more in love with sharks than I ever was. If you ever get the opportunity, please do it - you will not regret it. The sharks are really graceful, and curious things and it is such an awesome thing to do.

By the time our 40 minutes was up, I was absolutely freezing but I still did not want to get out. When Steve said that the next bunch of swimmers would be arriving soon Sam and I took a big breath and went and sat on the bottom of the cage one last time - I held my breath for as long as I possibly could and tried to savour every view of the tank and all the sharks. It was absolutely wonderful.

When I got out, Mum kept asking me - 'What next?' - well it's going to take some topping, that's for sure. It doesn't matter so much what is next, because right now I am the happiest, luckiest girl in the world. I've achieved my biggest dream and there really is no better feeling - there isn't really anywhere you can go from there. It's just the best place to be. I haven't stopped watching the videos and looking at the pictures and I've just generally been trying to relive it all every moment since then.

I really do wish I could show 14 year old me these pictures because I would have cried. Here is a short video that my Grandad took from the shark tunnel. I love the moment where my Grandma tells a stranger 'That's my Grandaughter! And her boyfriend!'

On Friday I went to a PORT charity day - the amazing charity that Sam and I fund raised for back in July - and I got to meet lots of lovely new people suffering from rare bowel disorders like me. There are only a small handful of us and there was a wonderful atmosphere of understanding and empathy. Everyone in the room knew themselves or had witnessed what it was like to be 'someone like me'. I had gone down on my own, with an early morning and some stressful trains and so I was a little tired and didn't manage to get round and socialise as much as I would have liked but it was still really great to be a part of their first education and support day and it was also wonderful to meet Sue, who runs the charity and also Adam and Lesley, who I've known for about 7 years but never met. The talks given by the consultants were really good and informative and I learned an awful lot from the day. Sue put a huge amount of work into organising it, so I'm sure she was relieved to have a 'sit down' when it was all over but it really paid off and it was a very successful day! I hope there is another one again at some point.

I had a rest day on Sunday as the horse riding was booked up - we're now going on Wednesday. It was a much needed rest day though as I was absolutely exhausted. Sam and I went into Southport to pick up some 'gender specific' (Shhh!) items for Emily's baby from click&collect and we had a little mooch around the shops. I picked up an enormous batch of soup from Sophie who has basically, been providing all of my food since I went liquid and it is delicious.

I've stayed in Ormskirk the past few days and commuted to work which in some ways was easier because it meant I wasn't living out a bag for two days, and some ways more tiring because... early mornings. I'm exhausted now. Beyond shattered. This actually seems to be the way I end most of my blog posts - y'know, just writing about how tired I am. I have loads of uni work to get done so I am going to try and rest and get that done this week. I'm in lectures tomorrow 9-1 and then I have the afternoon off so I plan to do nothing and catch up on all my uni work. For now though, bed time! Night night! xx

Third year starts here...

This week was my first week of third year lectures. Both modules that I picked for this semester seem interesting so far, I've just got to see if my enthusiasm holds out for 9 more months. I've picked Language and Gender, which I have on a Wednesday morning and Forensic Linguistics which I have on Friday in the morning for an hour and then a four hour gap (?!?!?!?!) and then back in again in the afternoon for another three hours.

I think out of the three years, third year had the most interesting modules to choose from. Next semester (that starts in January), I'll be doing Psycholinguistics and TESOL (Teaching English to Speakers of Other Languages) which I'm also looking forward to. I'm also hopefully going to start volunteering at a school all day on Thursday meaning I'll be busy every single day of the week which is probably going to be quite hard work. Hopefully it will be fun though and I'll enjoy it. I'm definitely going to have to work extra hard to get through this year! I'm already feeling pretty tired after my first week of working and uni so I'm tucked up in my bed writing my blog and watching The Big Bang Theory with the cat. #YOLO

So, I'll just catch up on this week. I travelled back to uni straight from work on Tuesday. I left work an hour early because there was a introduction soirée thing on Tuesday that everyone on the course was invited to. I also found out via email a few hours before that I got the highest mark on the course last year. And so for that, I won a Waterstones voucher and I've already treated myself to this cute little mini book lamp.

I went a pretty funky shade of red when I received it, but it was really nice to win something. I was exhausted after last year, but I think everybody was!

During the week, when I wasn't in uni, I had a pretty quiet time (I needed it) and even stayed in when the girls went out on Wednesday night because I was so tired. I dropped  off a car of drunks at the SU bar and totally felt like their Mum... or Gran.

My gappy Friday turned out ok because I went to the new Starbucks in town and drank coffee and did some reading and then I went back to the house, rested and did some more reading with the radio on. It was actually quite a manageable day. The break was good because it wasn't really long enough to do anything proper so it forced me to rest, which is something that I just don't get to do (as much as I like to talk and tweet about sleep/rest all the time, it really is just a distant dream!)

This weekend I went on a really lovely ramble with Irwin and Sammy. We found a ramble online in 'Churchtown' that we thought we'd do, but when we put it in the satnav we realised it wasn't the local Churchtown. How can there be two Churchtowns in the PR postcode? So, instead we went for a roam around Formby - through the forest, climbed the sand dunes (my favourite thing ever since I was about 10) and had a little paddle in the sea. Started and finished with a brew in our favourite Formby pub! 

On Saturday night we went for a meal at our favourite restaurant, Villaggio Cucina, with friends and then we went to see the Musical Fireworks in Southport (which we've now seen 3 years in a row - Sam probably even longer. I highly recommend them but don't pay to get in! You can see and hear perfectly from Rotten Row) and finished the night off with a drink in the new gin bar. I ate a little bit of gluten free pizza which is the first solid meal that I've had in over a month and I suffered quite a bit during the night and I'm only just starting to recover. So that has sucked a bit. But apart from that the fireworks were great and it was a really good night with friends. 

Sunday wasn't too exciting; we went to Church in the morning and then to see Sam's sister who had hurt her back earlier in the morning. So we took her sunflowers and Maltesers, because that is obviously the best thing for it! Get well soon Emily!

Back to work again today and I'm so bloody tired. I'm probably going to go to bed right now. On Friday I'm going to be going to a PORT education and support day in London at The Wingate Institute of Neurogastroenterology. There's going to be lots of other people 'like me' there, so it will be nice to get to meet them. It will be especially nice to meet the lovely Sue who co-runs the PORT charity which Sam and I raised funds for with our sponsored run - the day has been funded and organised by the charity and is going to be wonderful and special opportunity for sufferers of these rare conditions. I'll blog all about that when I'm back and recovered. I'll also hopefully be blogging about my shark dive (!!! YES !!!) which, fingers crossed, all goes ahead on Saturday and horse riding with the girls on Sunday - I'm going to be shattered!

Goodnight! xx

Keeping busy and achieving my biggest wish list tick!

It's been nearly two whole weeks since I've made a blog entry! I would say that I don't know where the time has gone but I've been so busy moving back to uni and keeping busy that I haven't had time to write it all down. Ideally, I would have liked to stick all this in a few different posts but lets just get up to date.

I'm feeling a little tired and un-eloquent today. Struggling to find words and write - not in an emotional way, just in an 'it's Monday' kind of way. So please excuse me if this just dribbles out my fingers and everything sounds a bit bland. This English student is clearly not ready to go back!

Southport Airshow

Last Sunday, Sammy and I, along with Sam's Dad went along to the Southport Airshow. Living on the coast, with Warton BAE and Blackpool airshow on my doorstep I've grown up with fighter planes whizzing over all hours of the day and night but in all my life I've never actually been to any of the airshows. This was a first. I really was not expecting it to be so exciting. It was a real thrill when the red arrows first emerged from behind us as we sat on the hill and they soared right over our heads.

The commentary was really interesting and my mind was well and truly blown when I realised that they were radioing down some of the commentary from the actual planes themselves as the leader of the arrows gave the commands and instructions to the other planes. It's amazing how they can fly so close to one another in such a tight flawless formation.

I'm not entirely sure of all the names of the planes that we saw, but it was quite exciting to watch a mock up sea rescue up close and it was also fun to watch the paratroopers sky dive onto the beach - it brought back memories of when I did my dive over three whole years ago. Sam took all of these pictures, because my camera phone is cack.

I got really cold and started to feel a bit unwell after a couple of hours so we didn't get to see all of the show and we missed the 'beach bombing' finale which was disappointing but I still had a really good day. I'm not sure if it was the cold making me feel so unwell or if it was just 'me'.

Back to uni

I was in work on Monday and Tuesday as usual and then on Tuesday night straight from work, I headed back to uni, with only a couple of bags in my car! I didn't bring a great deal back home with me when I came back to work for the summer, just a few shirts and jumpers that I thought might be useful to wear at work so I didn't really have very much to take back other than electronics like my laptops, chargers and some stationary that I had bought for back to uni. I wasn't actually in uni last week but I took the opportunity to see the girls and get some dissertation reading done.

On Thursday Irwin, Meggy B and I had a girly shopping trip to Liverpool which was really nice. We had a mooch and I treated myself to some new sports leggings for the gym, a cheap necklace from Primark and I also bought some presents for a certain upcoming birthday that I will be travelling back down south again for! Sam and I are very excited for this!

On Thursday night the girls had planned to go out to one of the freshers events - the paint party - but obviously got jealous of mine and Sam's pyjama and duvet party and we all stayed in and had a cosy night watching Mean Girls.

Another excellent film for Netflickers to check out is 'Oz The Great and Powerful' which Irwin and I watched in bed completely captivated on Wednesday night. It's a prequel to the Wizard of Oz starring the extremely beautiful James Franco [swoon] and I highly recommend it. Even though it's on Netflix, I think I am going to have to buy a copy for my DVD shelf!

It was good to be back with the girls, because I've missed them quite a lot and it just felt like a mad (but great) sort of normality was coming back to my life. It's our last year together, which we don't really like to think about so we have to make the most of it. I know we are all going to find it very difficult to move away from each other after we've spent the best part of three years, and also many of our term holidays together. We're all very close which is good because it's given my time at uni a good deal of stability since we've all been together since the start. This has definitely made my university experience a good deal easier in terms of the social aspects of living with stripes.

The Sharks

I don't really know how to give justice to the enormity of this part of the post. Many of you will know that I love sharks. I mean I really really love sharks. If everyone has a 'geeky' interest - mine is sharks. I think my love of sharks came about in the same way as the rest of the wacky items on my wish list (such as my wish to sky dive, completed in 2012) - from watching 'Jack Osbourne: Adrenaline Junkie' when I was bed bound and too sick to do anything except watch TV and think about all the things I'd want to do one day. The interest started with devouring all the shark Youtube videos, progressed to collecting National Geographic, shark week and David Attenborough books and DVDs, then I joined the Sharks trust, adopted a basking shark and then set my mind to it that I would swim with them. It was the one thing that was right at the top. If I had an end goal in mind, besides learning to walk again and being able to go to college/university and live independently it always came back to getting up and close with a shark.

I think the first time I left the house in maybe 6 months or more was with Laura to Blue Planet aquarium. That was the first step towards the dream. It was always Blue Planet that I was going to go to first - it was the most important thing to me if I was going to go anywhere and as soon as I was ready, Laura was ready to take me! We were probably about 15 years old and Laura took me in my wheelchair. I remember sitting by the massive window for absolutely ages just watching the huge sand-tiger sharks swim across the front. I knew you could dive with them at Blue Planet and it would have been so exciting to see someone get in with them that day but we didn't. The story that we always like to tell about our trip to Blue Planet (unrelated to the sharks) is when we went through the shark tunnel. You can walk through on the path (like sensible people) or you can go on the conveyor belt (like people unsensible people with a wheelchair). Now I think about it, I have absolutely no idea how Laura got me onto the conveyor belt, because that part of the story has been completely neglected thanks to how it ended. Basically, there is a red barrier, where you get off... or get sucked under the floor to meet your doom. 15 year old, 5 foot small Laura could not get my wheelchair off the conveyor belt as we got nearer and nearer the barrier which caused me to dive bomb out of it and the wheelchair ended up going through the red barrier. We also got stuck inside a rollercoaster simulator that day. So it was an interesting first trip out!

Anyway, that day was pretty big and pretty exciting and I ticked off seeing really big ones up close (I'd never seen Sand Tigers or any sharks that big before). It was amazing!

Earlier in the year Becca, Irwin and I went to the Sea Life Centre in Blackpool and we noticed that they were advertising a snorkelling with sharks experience and I was really excited! I decided that I would definitely be doing this!

In July, on my birthday Sam gave me a wonderful box of presents and I opened all my lovely gifts. At the end he handed me a final rather light parcel. I unwrapped it and was rather puzzled to find a bag of brown pellets. As Sam does he just stares me out and gives me absolutely no explanation for ages. Eventually he explained that we would be going to feed the sharks at the Sea Life Centre and I was absolutely ECSTATIC! I found out that Sam had enquired about snorkelling with the sharks and found a list of cans and cants - he found that my feeding tube/stoma fell into a bit of a grey area on what was considered a 'wound'. He sent an email and was given the response that I couldn't do it. When he told me this, I sent my own email just to doubley, trippley check that there was definitely no chance of me getting in with them. With my TPN at Salford on the horizon I know that it will soon be a clear categorical NO for swimming with them so I was desperate to find out really soon if there was any chance that I could snorkel but unfortunately I didn't have a response and so Sam and I just went ahead and booked a feed because I knew that either way, feeding them would be an absolute dream!

So, Saturday was the big day and we booked in to give them their afternoon feed! There was only me and Sam feeding them and we met up with a really cool 'shark man' called Steve who was awesome throughout the whole feed. He showed us some of the fish in the breeding programmes as we passed through the back to the shark enclosure and in one of the tubs was a baby ZEBRA SHARK of all things! This was obviously the icing on my cake and it was such a cute little thing swimming about the tank. She was probably about 30-40cm in length but Steve said that she would eventually grow to 3 metres! I can't wait to go and see her when she gets big enough to go in the shark enclosure - she will definitely be the star attraction!

Steve fed his favourite fish, Napoleon the Humphead Wrasse which was so cool to watch and then passed me a fish and let me hand feed the enormous Gary the Grouper fish! He was massive and it was only after that Steve told me that Gary once took hold of his entire arm when he was hand feeding him - he clarified that yes, it hurt. Gary was very lovely though and showed no interest in my arm.

After that we took some big poles and put some fish on the end and we got to feed the black tip (Boris), white tips (Willy and Wonka - Wonka has a wonky fin) and the nurse sharks. Some of the sharks were quite rough on the pole as they tried to take their fish - at times I thought I might inadvertently get to swim with them after all. Down below the enclosure in the tunnel, we waved at all the spectators and felt dead special whilst a talk was given on the sharks and their feeding regime. Steve was so awesome all the way through and really made sure we had a wicked time and got to see and do everything that we possibly could - I think he might have liked sharks more than I do because he seemed so excited to show us everything which made our experience really special. Sam told him about how much I wanted to swim with the sharks and Steve offered to make his own enquiries to see if he could take me in the snorkelling net himself. He said he couldn't make any promises but I'm keeping everything crossed that I can get to do this before I go in for TPN!

It was definitely the best experience I have had to date and I cannot believe how close I was to the sharks! They were absolutely amazing and as corny as it sounds this was definitely a dream come true!

You can't him see here, but I'm actually hand feeding Gary the Grouper!

Steve feeding Napoleon

Feeding the nurse shark (one was called Spot and I can't remember the name of the other one) and Boris the black tip!

Sammy waiting for a shark to take his fish

Sammy treated me to this cute shark mug from the gift shop at the end of the day and I have been enjoying my tea from it!

Harvest Festival

On Friday night, we went to Morrisons to buy some food for our Harvest Festival and church. It seems weird to say that shopping for Harvest was fun and I could have just kept on going through the shop chucking things into the trolley. Shopping for myself is so much effort. First it has to be liquid or possible to liquidise, then it has to be free from all my allergens. It's usually boring and most things I pick up have to go back on the shelf. When I shop for food for Sam, he usually chooses it, so that isn't the same. This time I picked things up, chose them myself and put them in the trolley! The only restriction was that it had to be non-perishable.

Harvest Festival was wonderful and I haven't done it since I was maybe 11, so it was lovely to get involved again and see a church full of people bringing their goodies and being so selfless. All the food that was collected went to Southport Foodbank which is obviously an excellent cause. It's so wrong that there are people going hungry so close to home (it's wrong that anyone should go hungry, near or far). I have a physical impairment which makes eating food tricky, but when I'm not getting enough nutrition, help is readily available and it can be given through my tube or in hospital. Due to my condition, my nutrition is so closely monitored and is readily available for me in a bag and yet there are healthy people going hungry right around the corner. It was really good to be able to give some food to the cause and I hope that someone enjoys the goodies that Sam and I chose for our box. Coincidently our box was an empty Nutricia box (what my feed comes in) so I like to think that I was literally passing the food parcel along!

That brings us up to date now. I just have tomorrow in work, and then I'm leaving work to get to Uni for 5pm for third year introduction and refreshments!

Hope you all had a lovely Harvest and good luck to all the freshers starting university as well as those who are going into their second year (it all counts now guys!) and third and final year! Especially good luck to those who are doing dissertations - may your creative juices now flow!

Lots of love to all x