Aladdin the Musical at the Prince Edward Theatre, London

I’m sure you’ll know by now that I’m a massive Disney fan, but I’m also really into musicals, as is my Mum. So when her birthday came round this year, I decided to buy two tickets for us to go and see Disney’s Aladdin the Musical up in London. I’d heard a lot of good reviews of it, but even after hearing those, the show still well exceeded my expectations.

Early one Saturday, we took a very packed train up to London Waterloo (turns out we’d picked the same day the Rugby was on!) and got a taxi over to the West End. I had planned to take my Mum to Pizza Express for a nice lunch before the show, but as we approached the restaurant I noticed there were some steps to get in. My Mum went inside to ask for their ramp, but after what felt like ages, came back out to tell me that they didn’t have a ramp and so we couldn’t eat there. Their excuse for not having a ramp was because they don’t have a disabled toilet! Just in case anyone reads this who happens to run a restaurant – most disabled people I’ve spoken to would rather be given the choice to still come and eat in a restaurant, whether there is a disabled toilet or not. As long as you make it clear when we first come in to the restaurant, it shouldn’t be a problem and is then our decision whether we would need that accessible toilet or not. Unfortunately, because this all took up quite a lot of our time, we ended up just grabbing a McDonalds, which wasn’t really the nice lunch I’d had planned.

Thankfully, as soon as we got to the Prince Edward Theatre, our experience improved dramatically. The security guards quickly spotted us looking for a way to get in, and directed us round to a side entrance where we waited for a lady called Heidi, who would be looking after us that afternoon. As we were a bit early and the house wasn’t open yet, Heidi asked if we would like to go into the foyer or use the toilets (to which I said yes!) Unless you’ve been in a wheelchair, you may not appreciate how overwhelming it can be trying to get through tightly packed crowds of people all pushing and shoving to get to where they want to be. But Heidi was fantastic; walking in front of me and clearing a path so I could get to the toilets without people bashing into me. I told her I needed someone like her with me all the time!

Once we’d made ourselves more comfortable, Heidi took us back around to the side entrance and we were able to go in to our seats. There are two choices when it comes to disabled seats – you can either go in a box and stay in your wheelchair, or transfer from your chair into a seat in an accessible part of the theatre. I had decided to transfer, as we weren’t 100% sure if my chair would fit through the door into the box (in retrospect I think it would have been OK). So I took my chair right up to the first row of the Dress Circle and transferred across to a seat with a pretty amazing view. My chair was then taken off to be stored, but I was told I could ask for it back at any time if I needed to use the facilities. 

As we sat down, I suddenly realised we hadn’t been able to buy a programme or look at any of the merchandise, so I mentioned this to Heidi. I honestly thought we would have to go all the way back round to the foyer, but instead, Heidi asked one of the Disney staff to come to our seat with the merchandise so we could buy anything we wanted without having to go anywhere. My Mum bought the programme package, which consists of two different books, as well as an Aladdin tote bag. We sat chatting excitedly, flicking through the programme as we waited for the show to start.

I was really intrigued to see how they had translated the original film into a theatre show, and as with any classic, was a bit nervous about whether they would do it justice. But I really shouldn’t have worried – it was AMAZING!! I honestly don’t think I can find the words to fully explain what a fantastic show Aladdin is. It had me crying, laughing, signing and dancing, and by the end I really didn’t want to leave! 

When we saw it, Matthew Croke was playing Aladdin and Jade Ewen was Jasmine. They both did an amazing job of bringing the two main characters to life on the stage. Aladdin came across, just like in the film, as a cheeky and fun young man, and Jasmine was just as beautiful as she is in the animated film. 

But by far my favourite character in the show had to be the Genie, played by the amazing Trevor Dion Nicholas. I think it’s probably the hardest role to play, as with Robin Williams playing the original Genie in the film, there are huge shoes to fill. But Trevor brought everything you could possibly wish for to the role. He was incredibly funny, sassy and had the whole audience crying with laughter with his witty one-liners and feisty comebacks. He also has the most insane voice, which was particularly noticeable in the Friend Like Me number, which nearly had me crying happy tears because of how well put together it was. It had a whole part that was just dedicated to tap dancing, which for someone that used to do tap was pretty darn awesome! And it even included some snippets of other Disney songs that really showed off Trevor’s incredible talent. I just wanted to take him home with me at the end!

Talking of the music, I was so impressed with the way Alan Menken (who has also written music for films including The Little Mermaid, Beauty and the Beast, Aladdin and Tangled – seriously, he’s amazing!) had not only included some well-known songs from the Aladdin film, but also composed some brand new pieces for the stage show. And with beautiful lyrics from Howard Ashman, Sir Tim Rice and Chad Beguelin, I was desperate to buy the soundtrack and listen to it on repeat over and over again! It was so nice to hear some of my favourites, like ‘A Whole New World’ and ‘Friend Like Me’ whilst also hearing new songs like the touching ‘Proud of Your Boy.’ 

Before the show, I was wondering what the set would be like, as I knew from the film that there are a fair few locations, some of which are pretty difficult to replicate in a relatively small theatre. But, like with everything else, I was awestruck by how the team (Bob Crowley on Scenic Design, Gregg Barnes on Costume Design, Natasha Katz on Lighting Design and Ken Travis who designed the Sound) had managed to bring everything to life. The street and palace scenes were full of colour, charm and a fair amount of sparkle, but by far the standout scene for me was the Cave of Wonders. I actually couldn’t believe what I was seeing! This golden cave just seemed to appear out of nowhere in front of us and was the perfect background for the big number before the interval!

I was also left speechless by the famous magic carpet scene. I don’t want to give too much away in case you’re hoping to see it, but I still cannot work out how they made that carpet fly! Watching that and listening to ‘A Whole New World’ left me feeling rather emotional (yep, I’m one of those people that cries at Disney songs!) 

The production came to an end all too quickly and I remember sitting in my seat for a minute just thinking that it couldn’t possibly be over – I just wanted to watch it all over again! As the audience started to leave the theatre, Heidi returned with my wheelchair and helped us back out of the side door. I needed the loo again by this point, so again, she cleared a path for us back round to the foyer so we could reach the toilets without being trampled by everyone leaving. By the time we’d come out of the toilets, the foyer was looking much more empty, which meant we were able to have a proper look at all the merchandise behind the counters (there were a few bits that hadn’t been brought to our seat). I’m a big pin badge collector, so when I noticed they were selling an Aladdin the Musical pin badge, I knew I needed to get one to add to my collection!

On our way to the theatre in the taxi, I had spotted the patisserie Maître Choux just a couple of streets away, so I told my Mum I would treat her to a fancy éclair as we hadn’t been able to have a special lunch. Unfortunately, there was a step into the store, and again, my Mum was told there was no ramp. It was getting cold, rainy and dark, so there was no way I was going to sit in the middle of the pavement eating an éclair, so in the end, feeling slightly upset and frustrated, we just made our way home. It’s a real shame, because the production was so amazing and the disabled access at the theatre was brilliant, but the two experiences of trying to get food and not being able to did spoil our day a bit. 

Still, I’m really glad I was able to take my Mum to see such a fantastic show and am so thankful for how easy Heidi and the rest of the Prince Edward Theatre staff made our afternoon there. 

If you like the sound of Aladdin the Musical and fancy going to see it yourself, you’ll have to be fairly quick, as it’s closing in August 2019! From Monday to Saturday it plays at 7.30pm, but on Thursdays and Saturdays there are also matinee performances at 2.30pm. You can book tickets through the website, but if you need an accessible seat, it is better to ring on 0344 482 5137 or buy them in person at the Box Office. 

Seeing Aladdin the Musical has definitely given me the musical theatre bug and I’m now desperate to go and see more shows (I have a rather long wish list, as well as wanting to go back and see Aladdin again!) Although I haven’t seen many shows, this one is definitely up there with my favourites, so if you love the original movie and are looking for something funny, full of sparkle, laughter and with music you can sing along to for weeks afterwards, I would definitely recommend booking Aladdin soon.

Are you a fan of the theatre? Have you seen Aladdin or are there any other shows you would recommend I put on my wish list?

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My experience of swallowing problems and EDS - Having an Oesophageal Manometry

Since the beginning of the year, you may (or may not!) have noticed that I’m trying to find my feet with blogging again. I went a long time with doing the same old posts and although I was enjoying it, it had become a bit repetitive and so I was starting to lose enthusiasm. So my posts began to dwindle and I put more energy into my YouTube channel (which I also love). But after setting a goal at the beginning of the year to get back to being more organised with blogging and YouTube, I’ve been trying to work out what I actually want from my blog. I’m not sure that I particularly fit into a certain niche – the only one I can really identify with is ‘lifestyle’ because it allows me scope to pretty much post about whatever I want! 

So as well as enjoying posting about beauty, fashion, afternoon teas, books, stationery and all that jazz, I also want to start posting more about health, disability, accessibility and chronic illness. It’s a big part of my life, and I know I will often look to bloggers for advice or reassurance on medical procedures, equipment and just managing life with a health condition, so over time, I would like to be able to offer the same to others. I’ve been through so many different types of appointments, tests, admissions, pieces of equipment and experience, so I feel I have a lot of insight to share. Whether that’s things I’ve been through in the past, or things that have happened more recently. But I thought I would start by talking about my experiences of having an Oesophageal Manometry test. 

I can’t remember if I’ve actually mentioned this on my blog before, but since around this time last year, I have been having problems with my swallowing. It started with a feeling of having something stuck in my throat, which has continued ever since. But now I’m also finding it difficult to swallow solids and liquids – it’s almost like they get stuck with my first swallow, so I need to either keep swallowing or cough to try and clear them from my throat. I get a lot of other digestive symptoms as well (burping a lot, nausea, really painful hiccups, pain, weight loss and reflux) although these could be related to my already diagnosed Gastroparesis and Intestinal Dysmotility. It makes meal times even more difficult than they already were and if we ever have to eat out, I can feel quite self-conscious because I’m aware I’m coughing/choking a lot. My family are used to it by now so it doesn’t faze them, but obviously in a public place it can draw attention. Plus the fact that eating is now an even more uncomfortable experience, which, as someone in recovery from an eating disorder, can be a difficult battle to fight.

Anyway, when these symptoms first came about, I went to see my GP. It just so happened that I had an upcoming appointment with my local Gastroenterologist, so my GP advised me to discuss it with her and see what she suggested. Unfortunately, that initial appointment didn’t go as I’d hoped it would. I explained the swallowing problems, the fact I had started losing weight and how much it was impacting on my life, only to be told it was ‘probably just my Gastroparesis’ and to just get on with it. She also said that I was still a healthy weight, so the weight loss didn’t matter. I remember coming out of that consulting room in tears and sitting in the car with my Dad as he tried to comfort me as best he could. It might sound extreme, but I was devastated. For the next few months, I was back and forward to my GP as she tried to contact my Gastroenterologist and get some proper help, but we were just getting nowhere. Eventually, we were able to get her to admit that this wasn’t her area of expertise and that I should go back to see my Professor up in London. To say a weight had been lifted off my shoulders is an understatement! I have always said that I do not expect doctors to know how to deal with everything, especially when it’s someone like me with very complex and often rare conditions. All I ask is that they can admit this, and pass me on to someone who can deal with it.

My referral back to the Professor came through quite quickly, which was a huge relief. I already had quite a lot of history with him – he had made my initial diagnosis of Ehlers-Danlos Syndrome, as well as doing tests to confirm my Gastroparesis and Intestinal Dysmotility, after years of being told I ‘just’ had IBS. So I have a lot of respect for the way he works and the fact he always seems to listen to his patients. When I went up for my appointment at the end of 2018, I felt nervous, as I do about any medical appointment. I was seen by a member of his team – a lovely lady who made me feel completely at ease. I went through my symptoms and the history of them, and she asked various questions to make sure she had a full picture of what was going on. We also talked about what my local Gastroenterologist had done for me so far, and she seemed genuinely shocked when I told her. It was nice to feel like I hadn’t overreacted about the situation to be honest! Once we’d been through everything, she reassured me that she wanted to get to the bottom of this, and even if it was ‘just’ my Gastroparesis, there were still things we could try to help.

The first thing she wanted me to have done was an Oesophageal Manometry test. I had already had one of these quite a few years ago, during a period of being extremely sick, so she said we could compare the results and see if there had been any changes. If this didn’t give us any answers, she would organise for me to have some further tests to look at other parts of the oesophagus. I came out of that appointment in tears again, but this time they were tears of relief that someone had taken me seriously. 

After a few false starts with my appointment day being changed and then me having to change it because the new date wasn’t suitable, last Friday my Dad and I caught the train up to London. Public transport with a disability is always a story in itself, so maybe I’ll touch on my wider experiences more in a different blog post! But as my appointment was at 10.15am, we needed to make an early start, which meant having to get a commuter train. To be honest, getting the train up to London was a dream this time! I had booked assistance online and although I have no idea whether the message actually got through (a rant for another day!) the guard was very helpful with getting the ramp out and getting me on the train. I read my book for a bit and then nodded off until we arrived in Waterloo. This was where the ‘fun’ began. Because the nearest tube station to The Royal London Hospital (Whitechapel) doesn’t have any disabled access, we have to go by bus instead. In general, I don’t mind travelling by bus – it’s nice to be able to see the streets of London and I don’t get as anxious as I do going underground. But it’s a lot slower than a tube! 

Our first bus wasn’t too much of a problem – I got on without any issues and although the bus took nearly twice as long as it was meant to, we got to our stop without too many issues. We then waited for our second bus and again, got on without any problems. We must have then moved no more than a few metres when the bus just stopped. For a while, I thought it was because the traffic was just being slow, but when I realised we hadn’t moved at all for well over 15 minutes, I asked my Dad if he could ask the bus driver what the problem was, as time was ticking and my appointment time was getting ever closer. It turned out that two buses in front of us had broken down in the middle of a crossroads, blocking traffic from all four exits. Passengers from our bus began to get off, as there was no way we would be going anywhere for a while. Obviously though, to get me off, we would need to put the ramp down, and where we were currently parked, the ramp would have gone straight into a wall. I was desperate to get off, as I was starting to get panicky about missing my appointment, so my Dad asked the driver if he would mind moving forward a tiny bit just so we could put the ramp out. He really wasn’t happy about doing it, and spent ages saying that he wouldn’t. I totally understand that his first priority was our safety, but it’s a horrible feeling to know you are literally held hostage somewhere just because there isn’t an accessible way out.

Eventually, thankfully, he could obviously see how upset I was getting, and he said as long as my Dad stood by the ramp to stop cyclists/motorbikes running into it, he would put the ramp down. I have never been so happy to get off a bus! We went up the road until we could find a dropped kerb and then managed to find a lovely taxi driver to take us the rest of the way. Taxis are probably the easiest method of transport for me in London, but they’re also the most expensive, and I just can’t afford to always travel by taxi just because I’m in a wheelchair. But this was a needs must situation! Somehow, we managed to get to the hospital five minutes before my appointment time, and were told they were running late anyway, so it gave my Dad time to grab some breakfast (I wasn’t allowed to eat) and for us to just de-stress a bit!

Before long, a male consultant was calling my name to come through for the test. By this point I was feeling quite anxious – I remembered having the test before and knew it wasn’t the most pleasant of things to have done. I have also had a feeding tube before, which was a pretty traumatic experience, so whenever I’ve needed a tube since, it has caused a lot of anxiety. Thankfully the consultant was incredibly calming – very softly spoken and went through the whole test with me, allowing me to ask any questions. He also offered me the option of having a numbing spray at the back of my throat – initially I wanted to go for it, but I asked what he would recommend and he said it was worth trying without to begin with so I trusted him on that.

He told me that they would pass a tube into my nose and then down my oesophagus into the top of my stomach. The tube has little sensors on it, which can record the movement of the oesophagus as you swallow food or drink. He said that we would start with me drinking little sips of water. After this, we might progress onto drinking a cup of water very quickly, and if they still needed more results he would ask me to eat some plain-microwaved rice (this actually sounded kind of appealing – I was starving!) 

There was a bed set up next to a monitor, and the consultant asked me whether I was able to transfer to the bed or whether I needed to stay in my wheelchair. I said I was happy to transfer to the bed, so the nurse helped me get into position. She covered me with a huge absorbent sheet (which made me feel a bit like I was at the dentist and was slightly concerned about what they were expecting to happen!) and gave me a sick bowl and some tissues. Then it was time to insert the tube – they could obviously tell I was anxious because the nurse sat next to me, held my hand and told me to take some deep breaths and try and relax (easier said than done!) They gave me a cup of water with a straw and told me to keep taking little sips as the tube went down. This is actually a tip I was given before I had my feeding tube put in but the staff doing that had never heard of it, so it’s good to see that these staff knew how much it could help. I would recommend it to anybody trying to have a tube put in.  

Unfortunately, after putting the tube in my right nostril, the consultant decided it wasn’t in the correct position, so they had to take it out and try again on the other side. Thankfully it went in fairly easily and strangely I didn’t gag at all. It’s an odd feeling having a tube going down your throat and I was very aware of it being there once it was in position. I remember that feeling so well from having my feeding tube (although as my body got used to it I would forget it was there). 

Once things had settled down a bit, the consultant began to squirt a small amount of water into my mouth. I would have to hold it in my mouth until he told me to swallow, then swallow once and stop swallowing until he said otherwise. This was by far the most difficult thing! It’s a natural reflex when you feel something in your throat that you swallow to get rid of it, so I was having a really hard time not swallowing. I think we had to do the test a lot more times than they actually needed because I just couldn’t stop swallowing after taking each mouthful of water. Eventually they suggested that, once I’d swallowed, I opened my mouth slightly and breathed through there – that definitely helped. I think I also began to calm down a bit, so with a mixture of breathing through my mouth and also closing my eyes and doing a bit of mindfulness, we managed to get through that part of the test.

The next part of the test was for me to drink a whole cup of water, as quickly as I could, and then stop swallowing when I had finished. Again, this was easier said than done. I can’t drink very quickly anyway because that feeling of liquid getting stuck starts to build up, so I begin to regurgitate the water and am either sick, start burping or having to swallow until that mouthful has gone down. So I think it took me longer than they were hoping for me to get through the whole cup of water. Again, once I’d finished, I tried to open my mouth, close my eyes and just take some deep breaths to keep myself calm and not swallow.

I was then expecting them to ask me to eat some rice, but the consultant told me they had everything they needed and they could take the tube out. I was a bit confused, and to be honest I wish I’d asked if the test had shown anything (although I’m not sure they would have been able to tell me). But I wasn’t sure why we were stopping and couldn’t work out if it was a positive thing (i.e. they’d been able to work out the problem) or a negative thing (i.e. they couldn’t see anything wrong so had given up). 

To take the tube out, the nurse gave me some tissue and a bowl and asked me to open my mouth a bit and hold the tissue over my mouth. I was fully expecting taking the tube out to be fairly easy, as I remembered it not being a huge deal when my feeding tube was taken out. But this was by far the worst bit for me. My eyes started watering (more so than they did when it was put in) and I started gagging and retching – hence the bowl I guess! It was also quite painful coming out, and left my throat and nose feeling quite sore afterwards. But it was over fairly quickly and I could clean myself up afterwards. Overall, the whole test probably only lasted about 20 minutes – much shorter than I’d expected, although obviously it would have been longer with the food part. 

The consultant explained that he would compare their findings to my last Oesophageal Manometry and send the report to my Professor to discuss with me. I don’t have an appointment date for seeing him at the moment, so I’ll give it a few weeks and if I still haven’t heard anything I’ll have to give his secretary a ring to see what I need to do next. I was absolutely exhausted after my test – partly because of my early start and also because it’s quite an invasive and stressful test, which I think just took it out of me. Our trip back home was less eventful thankfully, and I spent the rest of the day asleep on the sofa.

I’m just really hoping that this test might give us some idea of why I’ve started to have problems with my swallowing, and if it does, some ideas of treatment/management strategies for moving forward. Being told to just ‘get on with it’ when it comes to the symptoms of a chronic (or even an acute) illness, in my opinion, just isn’t right. I’ve heard it so many times before, and just because there isn’t a cure, or isn’t a treatment that will ‘make it better,’ it doesn’t mean that we still don’t need some help in learning how to live with and manage it in the future. I’m just glad my London Professor and his team understand this and I’m hoping this test will be a step forward in coming up with a plan for my swallowing difficulties. 

If you’re having an Oesophageal Manometry test soon and you have any questions, or if you would like to see a blog post about any other symptoms, conditions, tests or experiences I may have had, please do let me know, as I’m happy to talk about pretty much anything! I hope this has given you some insight into what this test is like - it's one thing reading the information leaflet that the hospital give you, but I think it's also really helpful to hear it first hand from a human being!

Have you had an Oesophageal Manometry? If so, how did you find it? Or do you have any experience of swallowing difficulties?

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How I got my Ehlers-Danlos Syndrome diagnosis - EDS Awareness Month

May is EDS Awareness Month and so, because I have EDS, I wanted to write a post to help people understand a bit more about Ehlers-Danlos Syndrome. I’ve already written about my Invisible Illness Story, what it’s like Living with Digestive Problems and about Week One, Week Two and Week Three on the Stanmore Rehabilitation Programme. So I was trying to think of something different I could talk about this month. I asked around a few friends, some Facebook groups and also on Instagram, and one topic I was asked about a few times was ‘How did you get your EDS diagnosis?’ The short answer to that question is “With great difficulty!” And so, because of the length of time and immense struggle it was for me to get the correct diagnosis and the fact I know a lot of people go through the same problems, I felt it might be a helpful story to tell you. 

I should probably start by saying there are lot of different routes to being diagnosed with Ehlers-Danlos Syndrome Hypermobility Type and so this post will only document my particular route and symptoms. I also need to include that I’m by no means a medical expert – I’m simply a person who has the condition and therefore has a lifetime of experience on looking for answers! My journey to diagnosis spans 25 years, but I truly believe it shouldn’t need to take this long and so by educating medical staff and people with symptoms, the journey to diagnosis should be much easier.

My story starts on the day I was born, although we didn’t realise it at the time. When the doctors came to do my newborn checks, they realised I had Developmental Dysplasia of the hips (DDH), which basically meant the ball and sockets of my hip joints hadn’t formed properly. This caused my hips to dislocate when I moved, and was treated with a fabric splint known as a Pavlik harness. I wore this continuously for a number of months and according to x-rays, my hips finally developed to a normal position. However, despite them appearing normal on x-rays, I have always had issues with my hips dislocating and subluxing (partially dislocating). It was just put down to being ‘one of those things.’ 

This saying soon became quite a big part of my life. As a very young child I started having problems with urinary retention, but my parents were told that girls couldn’t go into retention (completely incorrect) and again, that it was just ‘one of those things.’ I would often end up in A&E with painful joints and muscles, but these were always diagnosed as sprains and strains and I was just labelled as being clumsy (and probably a bit of a hypochondriac). Throughout my childhood I had all sorts of apparently random symptoms and problems, which, of course, were always ‘just one of those things.’ And so, because my doctors didn’t show any concern, neither did we. That was until I hit the age of 15.

At this point, my symptoms started getting a lot worse. I was exhausted and in pain all the time, was having all sorts of strange problems with my digestive system, my heart was always racing, I felt really faint and it felt like every day something else was going wrong with my body. My GP was my first port of call, and they ran some basic blood tests and sent me for an ultrasound of my abdomen. These all came back clear and as my symptoms continued, my GP referred me to a paediatrician and gastroenterologist. They ran a few further tests (more bloods, a barium swallow and I think a brain MRI). But the tests were all coming back normal, despite my worsening symptoms. As time went on, we still had no answers and the gastroenterologist stopped seeing me because they thought I ‘just’ had IBS (Irritable Bowel Syndrome). In the end, my Dad started doing some research into my symptoms, and came across the condition M.E. He asked my paediatrician if she thought I might have it, and her exact words were, “Well if you believe in that then we’ll call it that if you like.” Not helpful in the slightest and she was completely misinformed about M.E. Still, that’s the diagnosis I ended up with.

The M.E. diagnosis pretty much put a stop to any further investigation of my symptoms, and I was referred to the children’s mental health team (again, even if my symptoms were all caused by M.E. a physical health doctor really should have looked after me!) The next few years were difficult – with very little support for my physical health and with worsening mental health because of this, I ended up in a psychiatric hospital. No one was interested in my physical symptoms – I was either told they were psychological or all down to having M.E. This made it incredibly difficult to get anyone to listen to me. Then in 2012 I became very unwell. My digestive symptoms suddenly got a lot worse – I was losing a lot of weight and went downhill very quickly. I had various tests including a stool sample, gastroscopy and colonoscopy, as well as various scans, but no answers were found as to what was causing my problems. I ended up being admitted to hospital for tube feeding and further tests, but when no answers were found it was all blamed on psychological problems. This led to a mental health crisis and I was sectioned.

It was only after I spent a couple of years getting my mental health back on track that I finally found a GP that took my physical health problems seriously. Without her input, I’m honestly not sure where I would be today. I had been doing some research and talking to some friends, and at the same time, my GP had a friend with EDS who she had been talking to. The key moment was when I went into hospital due to problems with my gall bladder and the nurse happened to leave my notes on my bed with me. So of course, me being the nosey person I am, I decided to have a flick through! I came across a report from when I was very little – probably under two, in which a doctor had written that he believed I could have a connective tissue disease. I immediately contacted my parents and asked them about it – they had never been told anything about this. So we took the information to my GP, along with some of the research I had been doing, and that was the start of me finally getting some answers.

Rheumatology referral

The first thing my GP did was to refer me to a Rheumatologist at my local hospital. Before my appointment, I did quite a lot of research on EDS UK. I know there is often some question of whether you should research symptoms online and take them to your doctor, but I firmly believe this helped me to have a productive appointment with both my GP and my rheumatologist. There will always be a balance, but I don’t see being informed about your symptoms and (possible) diagnosis as a bad thing. I made a (rather long!) list of all my symptoms and my medical history, and even before I saw my consultant I suddenly felt like everything was starting to make sense.

I saw a fairly young rheumatologist and, for the first time, she seemed to really listen to everything I was saying. She asked a lot of questions about what I was like when I was younger (for example, my hip problems, the fact I’ve always been very flexible, my bladder and bowel issues and the fact I was always injuring myself were important for her to know) and then she examined me in quite a lot of detail. One of the diagnostic criteria is something called a Beighton Score, which assessed your level of hypermobility across the whole body. I believe my score was 9 out of 9, so I couldn’t be more hypermobile if I tried!

However, just because you score highly on the Beighton Score doesn’t automatically mean you have Ehlers-Danlos Syndrome. People can be hypermobile without it being diagnosed as EDS. The diagnosis comes from a whole range of observations and history including a high Beighton Score and then two or more other features from a pretty long list. This list includes things like having soft or velvety skin, a certain type of scarring, prolapses, arm span being longer than your height, positive family history and a whole host of other symptoms. My Rheumatologist ordered a few more blood tests, but gave me the diagnosis of Joint Hypermobility Syndrome. At the point of me being with diagnosed with this, it was still a valid diagnosis. However, I thought I should point out that the diagnostic criteria have now been updated and the names have been changed.

Gastroenterology and Cardiology referral

A diagnosis from a local Rheumatologist can be the end of some people’s journey if their symptoms aren’t too severe or affecting their life too much. However, a lot of people with EDS will have multi-systemic and co-morbid conditions that require further diagnoses and treatment. As my digestive and cardiac symptoms were the most difficult for me at that point, I was referred to local consultants for both of those problems. All of a sudden, having a new diagnosis seemed to get other doctors actually listening to me and taking me seriously. Both doctors ran a few tests, but it soon became evident that I needed more specialist input, and so I was referred to a couple of London specialists. 

London specialists

I don’t want to go into too much detail about every single specialist I was referred to, because we’ll be here all day! But my most important referral (as far as I’m concerned anyway) was to Professor Aziz, a neurogastroenterologist that specialises in digestive problems in people with Ehlers-Danlos Syndrome. I was so nervous about seeing him because up until then, no one had really taken my digestive problems seriously. But he was one of the best doctors I have ever seen. He and his team went through the examinations again, and changed my diagnosis from Joint Hypermobility Syndrome to Ehlers-Danlos Syndrome Hypermobility Type. They also ran some more specialist digestive system tests and after years of no answers, I was finally told that, most likely due to my EDS, I had Gastroparesis and Intestinal Dysmotility. If you’re interested to hear more about the other diagnoses I have received alongside my EDS, please do let me know and I’d be happy to talk about those more.

Royal National Orthopaedic Hospital Stanmore

I thought before I finish this post, I should include a small mention of my time at Stanmore. I was referred here by one of my local consultants, as they specialise in EDS and particularly in managing pain. The referral process was long and difficult due to it being so popular, but I was eventually seen by one of their Rheumatology consultants who spent over an hour with me. We went back over my whole medical history and she redid the Beighton Score, as well as a whole host of other examinations. They were able to confirm my EDS diagnosis and referred me to the three-week pain management programme, which I wrote about last year. They are also able to refer people for things like genetic testing if they believe you may have a different type of EDS. 

I’m really sorry this has been so long! I really hope it might be helpful to anyone that’s starting the diagnostic process, but also hope it will be interesting to those of you that don’t know much about EDS. If you have any questions at all, or would like to see me write about something in the future, please do let me know, as I’m always interested to hear your requests! And if you’d like to share this with anyone I would really appreciate it, as the more awareness we can raise this month (and beyond) the better.

Do you have a diagnosis of EDS or are you trying to get one? Have you found my story helpful? 

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My take on 30 before 30

In October this year I will be turning 30, and that prospect scares the hell out of me. I think there are a number of reasons – 30 feels so old to me but I still feel like I’m 16 – I literally feel like I’ve been put in some sort of weird time machine and my body has moved forward but my mind is moving backwards. I don’t know how to be a proper adult! I also struggle with the idea of being 30 because of how my life has worked out so far. I’ve spent my teens and twenties fighting illness and feel so far behind a lot of my friends with regards to life milestones – I feel like I need more time to catch up! When I was younger, I would always imagine what my life would look like at different ages. At 30, I imagined I would have a good job, be living in my own house, probably be married and be starting a family. But none of that has happened, which I think makes the idea of turning 30 even more difficult.

Because I’ve been finding the lead-up to this next milestone so hard, I decided I needed to do something about it. Moping around and feeling sad about getting older isn’t going to change anything, so I need to learn to accept how things are and make the most of what I do have and what I can do. I came across the idea of a 30 before 30 list a while ago and, although I found them a bit cheesy, they also intrigued me. But I always put off making one because I assumed they needed to include amazing adventures that I just wasn’t going to be able to achieve. Swimming with dolphins, travelling to Australia, holidaying in the Maldives – these are the kind of dreams I have on my Bucket List, and maybe one day I will achieve them, but I didn’t see the point in putting them on a 30 before 30 list – I simply wouldn’t be able to do them in time and would end up feeling like a failure.

Despite originally discounting the idea, for some reason I kept coming back to it. The more I thought about it, the more I realised that I didn’t have to copy all the other lists out there if I didn’t want to. I could change the idea to suit my needs – so that’s what I’ve done. Instead of calling it my 30 before 30 list, I’m calling it my 30 Around 30 list. This takes the pressure off me having to try and cram everything in before I turn 30 in October and, instead, I can really focus on enjoying the things on my list by doing them before and after my birthday. I’ve also decided to make it a realistic list (for me). I still have my Bucket List (which I really need to update on my blog!) that includes my bigger dreams of travelling the world, getting married, having a baby etc. But for my 30 Around 30 list, I wanted it to only include things that I feel are achievable in the next year or so. Basically, I actually want to be able to complete my list!

So I thought I would share my list with you today, and then give you updates on how I’m getting on with it as time goes on. One, because it will be a nice way of recording the things I do to mark my 30^th and a way to check in with myself to make sure I’m actually doing it. And two, because maybe it will give you some ideas of how you could make a list like this work for you. So here are my 30 Things I want to do around the age of turning 30.

1.   Go to Disneyland Paris

I’m a massive Disney fan (you probably know this by now!) We went to Disneyland Paris quite a few years ago and I absolutely loved it. I desperately want to visit Disneyworld in Florida, but for a number of reasons it’s just too difficult at the moment. So we have actually booked a trip to Disneyland Paris for September instead. Expect lots of posts and videos!      

2.   See a West End Show

I’ve only seen a couple of shows in the West End before – Phantom of the Opera and Wicked – and thought they were amazing. I just love the whole experience of going to London, having a meal and seeing a musical. I’m not sure which specific show I would like to see at the moment – there are so many on my list!

3.   Get a meaningful tattoo

I have been contemplating getting a tattoo for years but other things have always got in the way. There’s never been a specific design that I’ve wanted, but in the last few years I have really wanted to get something to remember the Grandparents I have lost. I think I’m finally at a point where I know that I want something meaningful, so I’m starting to investigate the best tattooist to make an appointment with.

4.   Get a job/create a job I love and that fits around my health

This is always going to be a difficult goal for me, mainly because of all my health problems. Working of any kind is never going to be easy or straightforward. A lot of my time is taken up with hospital visits, tests or just being unwell, so finding work that allows for all of that feels almost impossible. Which is why I have also added ‘create a job.’ If I could use my journalism degree to move my blog and YouTube channel forwards, and perhaps do some freelance work, then I think it might be possible to make it work around my health. It’s going to be a lot of experimenting and flexibility, but it’s something I’m thinking about.

5.   Visit Scotland

There are so many places I would love to visit, but I’ve always thought how strange it is to travel abroad when you haven’t even been to the countries in the UK! And I’ve never managed to go to Scotland. I know it’s quite a big place, but I think Edinburgh is top of my list right now.

6.   Go up to London for something that isn’t medical related

I travel up to London a fair bit these days, but for the majority of the time it is for a hospital appointment or some medical tests. Because these things are often incredibly draining, I find myself getting to Waterloo, taking a tube, bus or taxi to the hospital, having the appointment and then heading home. I see London out of my taxi window, but never get to experience the fun bits.

7.   Start doing my yearly Project Life albums

I bought my first Project Life album quite a few years ago, but it’s still sitting empty in my craft drawers. I also take a lot of photos, either on my phone or digital cameras, and they just end up sitting on my computer never being looked at again. So I would really like to start printing my photos out and making yearly albums with Project Life. It will give me the opportunity to be creative, and will also give something tangible for me (and my family) to look back on.

8.   Have a meal at The Ivy, London

I remember when I was younger – I would hear about celebrities going out to The Ivy for lunch or dinner and thinking how classy it must be. Fast-forward a number of years, and I’ve started seeing lovely photos and videos of bloggers and YouTubers going to the same place, enjoying the flowers outside the door. It’s made me want to visit even more!

9.   Have a spa break at Champneys

I’m a big lover of a spa – there’s nothing better than taking a few hours (or days) to just relax and get pampered, leaving you feeling rejuvenated and ready to carry on with your life. A few years ago my Mum and I enjoyed a Champneys spa break at Forest Mere, and I am desperate to go back for a few days again.

10.   Have afternoon tea somewhere fancy

If you’ve been following me for a while, you will probably know that I do love a good afternoon tea. I’ve been to quite a few different places, but there are so many more places I’d like to try. I think half the fun of it is deciding where to go next!

11.   Go to The Cotswold’s

Like I said earlier when I was talking about Scotland, there are so many places in the U.K. that I’ve never visited and have only seen in photos. And The Cotswold’s is one of them. Every photo or video I’ve seen from people’s trips there just look so beautiful. I really need to find a lovely little Airbnb so I can have a chilled out week exploring the countryside.

12.   Go back to Helmsley

A lot of people reading this will probably never have heard of Helmsley, but it holds a special place in my heart. It’s a small market town in North Yorkshire where my Grandparents (my Dad’s parents) used to live. I remember so many happy holidays up there, exploring the moors, going into York and finding farm shops with yummy cafés. When my Grandpa died, my Grandma moved down South to be closer to her family, and we haven’t been back since. I really miss it and would love to go back.

13.   Go back to Felixstowe

Like Helmsley, Felixstowe also has a special place in my heart. It’s wear my Mum’s parents used to live when I was little and where I lived for the first couple of years of my life. However, my Grandparents moved to live near us when my Grandad had his first mini-stroke and, again, we haven’t been back there since. I have so many happy memories of playing on the beaches, going to the pitch and put with my Grandad and buying souvenirs on the high street. I know it will be different now, all these years later, but still, I would like to see it.

14.   Go to The Lake District

This is another place I’ve never been to but heard (and seen) so many lovely things about. I remember a friend posting some photos of her holiday in the Lake District and I just couldn’t get over how beautiful it was. I would love to see it in person one day.

15.   Visit Longleat

I actually went to Longleat Safari Park a few years ago around Christmas and loved seeing the animals. But we soon ran out of time after taking quite a while to get round the car safari, so I would love to go back and see more of the park. Perhaps even stay at the Center Parcs nearby and make a proper holiday out of it.

16.   See a ballet

I remember seeing a couple of ballets when I was a lot younger – Coppélia with my dance school and I think Cinderella with a friend. I also did ballet myself, from around the age of 3 until my health started to go downhill at the age of 15. I really enjoyed both doing it and seeing others perform, and would love to go again now that I’m much older. I’m not sure which ballet I’d like to see at the moment, so if anyone has any recommendations I would love to hear them.

17.   Get my business cards printed

This one is pretty self-explanatory really! For months I have been saying that I need to get some business cards made up for my blog and YouTube channel, so that when I go to events or when someone asks me about my blog I can just hand them a card. But for some reason I still haven’t got round to it, despite knowing where I want to get them from. So hopefully this should be quite an easy one, and will also show my commitment to continuing with my blogging and freelance work.

18.   Complete my Limited Edition Disney Classics and Pixar DVD collection

If you’ve followed me on Instagram or YouTube for a while, you will probably have seen that I collect the Disney Classics and Pixar DVDs with limited edition sleeves. I’ve collected most of the more common ones, but still have quite a few of the more unusual films to pick up. So I’m excited to continue adding to my collection – all the shiny cases look so pretty together!

19.   Go to Sussex to visit Sarah and Charlie

When I was putting this list together I asked for ideas from some of my friends. One person suggested having a couple of points for seeing friends I don’t see very often or haven’t met in person yet. It was really tricky trying to whittle down all the friends I would love to see, but I thought that just because I put a couple on my list, it doesn’t mean I can’t still see others. So the first person I want to make an effort to see at some point is my friend Sarah, who now lives in Sussex, and her little boy Charlie. We get to see each other now and again when she comes back to see her parents, but I thought I would make this something a bit different and actually go to visit her. It’s not the easiest as I can’t drive that distance on my own, so I need help from my parents, but it is do-able.

20.   Meet up with Becca H and celebrate our 30^th birthdays

Another friend I’ve been trying to meet up with for literally years is my friend Becca. We ‘met’ through an M.E. charity for young people when we were about 15 and have been talking ever since. However, the only time we’ve ever met in person was completely by accident, when we bumped into each other while I was shopping with a friend in Chichester (years ago). As our birthdays are in the same month, we’ve said that this year, we really need to do something to celebrate us both turning 30. I suggested meeting up at Chewton Glen, so we’ll see what we can organise.

21.   Visit an animal shelter with a donation of toys/food/treats for the animals

You’ll probably know by the name of my blog and my Instagram photos that I’m a big animal lover. This idea was actually something suggested by another friend and I thought it was a lovely thing to put on my list, as I didn’t want everything on this list to just revolve around me. I’m not sure which animal shelter/charity I want to donate to at the moment – I’d like it to be somewhere I can actually visit with my donations, so I need to do a bit of research.

22.   Get the train up Snowdon

I’ve always loved the idea of climbing a mountain, but because of my health problems and the fact that I use a wheelchair to get any further than a few steps, I never thought it would be possible. But then a friend told me about the Snowdon Mountain Railway, which goes right to the summit if you travel at the right time of year. Finally, I can actually ‘climb’ a mountain! I’m hoping this goal might appeal to my Dad, as he’s really into trains, so hopefully I can drag him and my Mum along to help!

23.   Treat myself to a designer handbag

I’m probably more of a shoes girl than a handbag girl, but that doesn’t stop me loving a pretty bag. I’m always lusting after the expensive bags if we ever go into a department store, so I decided to add treating myself to one to my list. It’s unlikely to be a really expensive designer handbag – one because I can’t afford to spend thousands of pounds on a bag, and two because if I did spend that amount, I would be too scared to actually use the bag! So my thoughts are something mid-range. More expensive than I would usually spend on a bag, but not completely out of reach either. I’ve seen some lovely bags from Kate Spade that I’ve been eyeing up, so they could be an option.

24.   Graduate from university

This is another pretty explanatory goal, but one I’ve been wanting to do ever since I understood what university was. My earliest memory of discussing university was when my Dad would tell me stories of his university days. Apparently at the age of about 5 or 6, I told him I didn’t want to go to university because I didn’t like curry (in some of his stories he had mentioned that he went out for a curry with his course friends!) Once he’d reassured me that I didn’t have to eat curry at Uni I felt a lot happier and more interested in getting a degree (and I do now like curry!) Fast-forward to now – it’s taken me three attempts at three different universities, over the course of ten years, but I’m finally coming to the end of my journalism degree. I still feel anxious that something will go wrong again and I won’t finish, but the closer I get, the more possible it seems.

25.   See the sun rise or set over the sea

I think this is a pretty standard bucket list goal, but that doesn’t bother me. There’s nothing more beautiful than seeing a golden yellow and orange sky over the sea – whether that’s in the UK or somewhere a little bit warmer, I’m not too fussy! But I just want to actually make the effort to sit still, wait around a little longer (or wake up a bit earlier) and enjoy one of the world’s most picturesque sights.

26.   Do something to raise money for charity

I’ve done quite a lot of fundraising over the years – I’ve organised a live music night, done a disabled climb over The O2, baked cakes for coffee mornings and been sponsored to wear funky socks and share them on social media. I have a few different charities I like to support, which include EDS UK, Mind and Beat so I’m currently thinking of what I can do next to raise some more money to support them. If anyone has any ideas of things I could do that are suitable for a disabled person I would be interested to hear your suggestions.

27.   Have something I’ve written published in a magazine or newspaper

I was debating whether to put this on my list, as it’s something I’ve already done a few times (I’ve had articles in Happiful magazine, our local magazine and a hospital magazine) but I thought there was nothing wrong with wanting to do the same thing again. After all, journalism is what I hope to do with my life, so setting myself a goal of getting something else published seemed like a good idea!

28.   Go on a cruise

Up until recently, going on a cruise has never appealed to me. I didn’t like the thought of being stuck on a boat for weeks on end and was terrified that I’d spend the whole trip being sick (I had an awful experience on a ferry once, which has really put me off boats!) But I didn’t actually know that much about cruise liners until I saw a programme recently on ITV about a cruise (and also saw some YouTube videos of the Disney Cruise Liner!) It made me realise just how huge the ships were, how much stuff there is to do on them (they are literally like a whole village) and how good they would be for someone like me who wants to see the world but doesn’t find travelling the easiest. The fact I could get on a boat and not really have to move much unless I felt able to get off when it stopped and have a look around sounds pretty perfect.

29.   Go on a date

When I was making this list, the same kind of dreams kept coming up in my head – I want to get married, I want to have a family, I want to buy my own house… But all of these goals just seemed so out of reach compared to where I am at the moment. So I had a think about what the first step towards those things would be, and taking the initial step of actually going on a date sounded like a good idea. I’m actually considering joining up with a dating agency to achieve this, as I’m not having any luck with the likes of Tinder or trying to meet someone in person. So wish me luck!

30.   Complete 30 random acts of kindness

My last goal is slightly vague, as I didn’t want to specify what I want the random acts of kindness to actually be. I do try to do little surprises for people anyway, but I liked the idea of doing 30 for my 30 years.

And that brings us to the end of my 30 Around 30 list! I think I’ve got a good range of goals to work towards – some fun, some kind and some just plain scary! But I think it’s important to challenge yourself a bit and do things that scare you from time to time. You never know what you’ll end up getting out of them. I would be really interested to hear your thoughts on my take on the 30 Before 30 List, and if you have any suggestions or recommendations for any of my goals. As I said, I will try and keep you updated on how I’m getting on with my list through blog posts, so keep an eye out for future posts. And if you don’t see one for a while, give me a poke and ask me why!

Have you done a list like this at all? What goals would be on your list?

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