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 Eating Disorder Story - Why Wait?

Eating Disorder Awareness Week runs from Monday 26^th February to Sunday 4^th March 2018, and this year Beat, the UK’s largest eating disorder charity, are asking the question ‘Why wait?’ On average, 149 weeks pass before someone experiencing eating disorder symptoms seeks help. That’s almost three years, 37 months or 1043 days. In other words – it’s far too long. There is evidence that shows that the sooner someone gets the treatment they need, the more likely they are to make a full and fast recovery. I know from personal experience the negative consequences of not receiving the correct treatment soon enough, so this week I want to share a couple of posts about my experiences of having an eating disorder. I had a look back through my blog posts and noticed that I talked about my eating disorder story back in 2014 – I can’t believe that was four years ago now! So I decided I would start this week by writing up a new, up-to-date account of my journey with an eating disorder. I want to add a quick disclaimer that this could be triggering, so only continue to read if you feel strong enough. And of course, this is just my story and opinions – it shouldn’t replace medical advice from your own doctor.

Looking back knowing what I know now, my eating disorder story starts when I was fairly young. When I first started school at the age of 5, I had never given any thought to my weight and as far as I was concerned, food was just something to enjoy and to fill me up when I was hungry. Throughout Infant School I was fine, but then I went up to Junior School when I was 7, and things started to change. Boys in my year started making little comments about me and in my second year at the school, one boy in particular started making comments about my weight. I still remember vividly, walking up the stairs to our classroom after P.E. with him behind me, and he decided to kick me and call me fat. It was the first time anyone had ever called me that and, although I was starting to become more aware of my body and the differences between my friends and I, at that point I had always felt OK about the way I looked. But that one comment changed that, and after that incident, I started to become much more self-conscious and self-critical. I didn’t want to wear clothes that showed off my body any more and started to get fixated on healthy eating, reading books and magazines about eating healthily and losing weight. Despite this, I think I managed to hide my feelings fairly well and just sort of put up with the comments and my anxieties around my weight and food.

When I moved up to Senior School though, my anxiety and fixation on my weight started to get worse. I think this was partly due to going through puberty and feeling uncomfortable with my body changing, but also because I started getting bullied by some older boys, who again, decided to make comments about my weight, trip me up, push me over and push me down the stairs. I just want to say now, before we go any further, that I really wasn’t a fat child. Yes, I wasn’t super skinny like some girls in my year, but I was far from overweight. But at the time, all I could believe was the nasty comments being directed at me. Again, despite all this bullying, thanks to a good group of friends I was able to somehow manage my body and food anxieties. Without those friends I think things would have been very different.

Things started to go downhill around the age of 15, when my physical health started getting worse. I won’t go into too much detail about that side of things now because otherwise this post will end up being a book! But in short, I had had health problems since birth (which we now know are due to my Ehlers-Danlos Syndrome) but it wasn’t until I was 15 that I became really physically unwell. One of the ways my EDS affects me is by giving me awful digestive symptoms, and when I was 15 these started to become pretty severe, alongside other symptoms of pain, fatigue, nausea and sickness. I was finding it physically impossible to get enough nutrition into me, and the food I was consuming didn’t seem to be absorbed properly, leading to me losing weight. At this point, we didn’t know what was wrong with me, and while I was waiting for a referral to a paediatrician, my GP asked my Mum to weigh me regularly and keep a record of what my weight was doing. I had never weighed myself before this, but within a few weeks of regular weigh-ins, I had started to become fixated on the numbers, and got a kind of strange buzz from seeing them going down. Alongside this, I started getting comments from people about my weight loss, and they made me feel good. I wasn’t losing weight on purpose, but the numbers and the comments had started to affect my thinking and I was becoming scared of putting on weight, and therefore of eating.

As time went on, I went through hundreds of tests to try and work out what was going on with my physical health, but they just kept coming back normal. In the end, my doctor said they were diagnosing me with M.E. but that they weren’t actually sure it was the right diagnosis – they just didn’t know what else to call it. But more and more, I felt like I wasn’t being believed that there was something physically wrong, and doctors were hinting that they thought I was making it up. I felt completely out of control of my body and what was happening to me, and felt more and more depressed. The only thing I had control over was my weight, so I got drawn in further to limiting my food and losing weight. There was still a physical element to this, because whenever I ate it caused me horrible symptoms, which I now know are because I have Gastroparesis as a result of my EDS. But at the time, no one believed me that there was a physical problem, so I was referred to a child psychiatrist and my physical health was pretty much ignored. As my mental health became worse, less and less attention was paid to my physical health. I was self-harming and making regular suicide attempts, as well as barely eating.

Eventually, when I was 17, I was admitted to an Adolescent Psychiatric Unit in Winchester for my depression. The unit actually specialised in eating disorders, but despite my parents continually telling the staff that I had an eating disorder and needed help, they refused to acknowledge it because my BMI wasn’t below a certain number. I found it so hard having to watch the other patients on the eating disorder programme getting a high level of help and support throughout the day with their eating and managing their feelings, while I was left alone. Without any meal support (my parents were really hands on with it when I was living at home) my weight began to drop further and I became more and more unwell. But it took about five months for the unit to finally recognise that I did, in fact, have an eating disorder and I was diagnosed with an Eating Disorder Not Otherwise Specified (EDNOS) and moved on to the specialist programme. However, because my weight still wasn’t low enough, I wasn’t able to start on Stage One, and so instead, went in towards the end of the programme, meaning I missed a lot of the group sessions and support that the other patients had had.

I’d been waiting nearly three years for someone to realise I was struggling with food and my weight, and to be honest, by the time they did, I think it was too late. This is why Beat’s ‘Why Wait’ campaign is so important. Being on the programme certainly helped a bit – I put on a bit of weight and started to learn some healthy coping mechanisms, but before long I was discharged back home. I went from having 24/7 support to seeing an eating disorder nurse once a week – it was a big change. Despite that, I did manage to maintain my weight and started at college. In between turning 18 and 19, I was transferred to adult services and lost the little eating disorder support I had been getting. Somehow though, for a few years I managed to keep myself stable. There were times when I really struggled and I started to lose weight or engage in eating disorder behaviours again, but I was able to pick myself back up again and focus on other things in my life.

Things were going OK until 2012 when my physical health went downhill again. It all started with what I thought was a stomach bug – everything I ate just either went straight through me, or made me sick, and after this continuing for a month, I went to see my doctor. I was referred back to my Gastroenterologist, who carried out a variety of tests including a colonoscopy and OGD (Gastroscopy). But again, these were all coming back normal and I was getting more and more poorly. I continued to lose weight, unintentionally for the first few months of the year, but this weight loss, like last time, started to feed into my eating disorder again. In the summer of 2012, my Dad took me for an appointment with my Gastroenterologist – she took one look at me, realised how physically unwell I was, and admitted me to the ward for tube feeding. At this point, this was still for physical health problems – the idea was that I would be put on an elemental feed, which would give my digestive system a break from having to break food down and hopefully help me to start absorbing my food again. Whilst I was in hospital being tube fed, a few more tests were carried out, but these, again, all came back normal. After over a month of tube feeding, my doctors told me they couldn’t find anything physical wrong with me, so were going to remove the feeding tube and send me home.

I told them a few weeks before that all these physical problems had triggered off my eating disorder and that I really needed help – I’d been tube fed for what felt like a long time and I said that, if the tube was just removed, I honestly didn’t now how to start eating again. But despite this, they took the tube out and I was given an appointment with the eating disorder service for a couple of month’s time. I was absolutely terrified of eating – both because of the awful symptoms it caused me, but also because I didn’t want to put weight on. I also felt completely defeated by my physical health and let down by the health profession. I just didn’t want to carry on living any more. And when the tube was removed, I just gave up and didn’t eat. I thought if I stopped eating then they would just let me die. This carried on for about a week, by which point I was starting to slip into a coma, so they put me on a drip (against my will) to keep my sugar levels stable. My eating disorder appointment was brought forward and somehow I managed to get over to the hospital for an assessment with the team.

It was a difficult meeting because I felt like I couldn’t make myself understood about why I wasn’t eating. The doctor told me that, if I could eat something within the next 48 hours, then they would take me on as a day patient. But 48 hours went by and I just couldn’t do it. It was like there was some kind of wall up in front of me. I went back for another appointment with the psychiatrist, who told my Dad and I that I was too unwell to be given help as a day patient. I vividly remember my Dad saying something along the lines of “OK, so does that mean she will go into an inpatient eating disorder unit then?” And the response of the doctor was, “No, because she isn’t unwell enough (i.e. underweight enough) to meet the criteria for inpatient care!” So I was too unwell for day patient treatment, but not unwell enough for inpatient care. And there is nothing in between!

I was sent back to the general hospital and, a little while later, a group of three different staff from social services, as well as another psychiatrist, came to speak to me. I don’t remember a lot about it, apart from feeling really confused by all their questions, but I was soon told that I was being sectioned under the Mental Health Act. I just remember breaking down in tears, telling them not to take me until my Mum arrived. It was by far one of the scariest experiences of my life, and at some point, if you’d be interested, I will write about my experiences of being sectioned. I was taken by ambulance to a general psychiatric ward (which was incredibly run down) where they had no experience of eating disorders. But it was a massive wake-up call for me, and the next day, while a member of staff sat with me, I ate my first bit of pureed food. I just couldn’t put my parents through the worry any more, and as much as I wanted to die, I could see how much it was affecting them. So I did it for them.

For the next month or so, I continued to eat very small amounts, but enough to keep me going, and I got my head into a slightly better place. When my section was lifted and I was finally allowed to go home, I was accepted as a day patient by the eating disorder team and began treatment on their programme. Again, I don’t want to go into loads of detail about what that treatment was like, but if it’s something you would be interested to hear about let me know and I can do a separate post. But I spent a good few months going to the hospital daily to eat my meals and receive individual and group support. It was really hard putting weight on and relinquishing that control, and my physical health was still causing me problems. But I knew that no one was going to listen to my physical health concerns when I was so mentally unwell, so I used that as a motivation to ‘get better.’ Once I had reached a healthy weight, I was discharged as a day patient and became an outpatient, seeing a psychologist once a week to be weighed and for therapy. These sessions were gradually spaced out more and more, and soon, I was discharged completely from the eating disorder service. I didn’t feel ready and challenged their decision, but unfortunately, due to a number of reasons (mainly the fact that there simply aren’t the resources to continue with long-term support) the decision stood.

I guess that pretty much takes us up to where I am today. It’s been a few years since I stopped receiving any help for my eating disorder, and things haven’t been easy. I’ve had good times and bad times – my weight has gone up and down (not helped by my digestive problems) and my mental health has been just as wobbly. But overall, I am managing. I haven’t had to be referred back for more treatment, I haven’t had to go into hospital for my mental health and I have just about avoided being sectioned again. I don’t think I will ever be completely rid of my eating disorder – I’m always going to have to be aware that I am susceptible to triggers and keep a close eye on my weight, my behaviours and what my mind is doing. But as long as I’m keeping fairly stable, then I think that’s OK.

As I mentioned, Beat’s campaign for this EDAW is ‘Why Wait?’ and I think it’s such an important question to be asking, both to people who have eating disorders, but also to the government. I spent a long time denying I had a problem and being terrified to seek help, but I really wish I had done it sooner. But at the same time, whenever I have tried to access support and treatment, it has either been denied or there has been a huge wait, leading me to become more and more mentally and physically unwell. By the time I’ve received help on the few times I have asked for it, I have been incredibly poorly and my eating disorder had become so engrained that it’s been an even harder journey towards recovery. So if you’re reading this now and think you might have a problem with your eating, thoughts and behaviours, my biggest piece of advice would be to talk to someone. Whether that’s your parents, a friend or your GP – just starting that conversation is a massive step on the journey towards you getting help and living a life where your eating disorder doesn’t control your every move. If talking to someone you know feels too scary at the moment, Beat have an amazing helpline and will listen to you in confidence, giving you the support and care you deserve. You can find them on:

Helpline – 0808 801 0677

Youthline – 0808 801 0711

As well as some posts on my blog, I have also got a video going up over on my YouTube channel, which I would love you to check out. And if you would like to share this post to raise awareness during Eating Disorders Awareness Week, it would mean the world to me.

Do you have any experience of an eating disorder? I would be really interested to hear your thoughts on my post, your experiences or how you will be raising awareness in the comments

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Week Two: Stanmore Pain Management and Rehabilitation Programme

If you read my last blog post, you will know that instead of my usual Sunday Snippets posts, I will be telling you about what I’ve been up to at The Royal National Orthopaedic Hospital Stanmore Pain Management and Rehabilitation Programme. Before I went into hospital, I spent ages searching for blog posts and YouTube videos from other people who have done the programme, but the only one I could find was by the lovely Sarah in Wonderland. I found Sarah’s posts really helpful to read through and they helped me feel a little less nervous and understand a bit about what I had in store. So I decided to write about my experiences on my blog in the hope it will help others going through a similar thing. They’re going to be pretty detailed, as I don’t want to miss anything out, but I understand that these are fairly specific posts and probably won’t interest everyone. I would also like to do some other posts about my initial appointments and referral process, and will also be uploading some videos to my YouTube channel once I’ve done my three weeks. So if there’s something you’d like to me post about, please let me know. I hope you will either find them helpful if you’re waiting to go on the programme, or find them interesting if it’s not something you’ve experienced before.

Day Six – Monday 22^nd May 2017

I was up at 5.30am so my Dad could drive me back to Stanmore. We set off a bit earlier than last week, as the traffic was so bad and I didn’t want to be late. But this time the traffic was OK and I got to the ward really early, just after 8am – typical! I got unpacked and rested on my bed until the other girls arrived.

Weekend Review – 10am:

As a group we each went through our weekend goals and discussed whether we’d achieved them. I got on fairly well with my goals:

1.    Practice new walking technique à I did practice it, but found it hard with my right hip and shoulder pain from dislocations

2.    Physiotherapy exercises each day à I only managed to do them on the Sunday. I was too busy and tired on the Saturday

3.    Trial a relaxation activity once a day à On Saturday I used the Headspace app to do some deep breathing and on Sunday I used the Calm app to do a guided body scan to music. I found them both really relaxing and it’s something I would like to try and keep up

4.    Reflect on my weekend using the traffic light pacing system à I paced a bit better on Saturday but on Sunday I had way too much red and not enough green

Foiling a Flare-Up – 11am:

Greg, my physiotherapist, led this session. We talked about the things that can trigger a flare-up, such as a new injury, stress and over-activity. Then we discussed what a flare-up actually is, as it can be easy to confuse an increase in symptoms after using muscles we don’t normally use with a flare-up of pain. We also chatted about the types of symptoms you might get during a flare-up. Greg explained that there are passive and active ways of coping during a time like this. Some passive ways of coping include:

·      Taking medication

·      Resting

·      Seeing your doctor

And some of the active ways we can cope with a flare-up are:

·      Correcting posture slowly

·      Setting new baselines

·      Pacing rest and gentle movement

·      Relaxation

·      Distraction techniques

·      Stretching

·      Ice or heat

·      Communication

·      Identifying triggers

·      Staying positive (much easier said than done!)

We also talked about some strategies for moving on from a flare-up including:

·      Re-setting our baselines

·      Moving gently

·      Negotiating restarting activities e.g. with work, friends, family

·      Pacing up

Greg advised us to each come up with our own individual flare-up plan with our therapy team, so I hope to do that next week. He also suggested we could make a flare-up box with things we might need during a flare-up, for example our favourite drink/food, a flare-up plan, medication, distractions, relaxation tools etc.

Goal Setting – 1pm:

After lunch we had a group led by one of the psychologists. She started by asking us ‘what is a goal?’ and ‘how is it different from a wish?’ We thought of some reasons why we might need goals:

·      Help us to focus

·      Increases motivation

·      Makes things seem achievable

·      Increases confidence

·      A sense of accomplishment

·      Gives us a purpose

She then explained that they are split them into short- and long-term goals and must have value for the individual, otherwise there will be no motivation to achieve them. Long-term goals can include:

·      Something to achieve in the future, e.g. a new skills or something you used to do

·      Self-care e.g. dressing independently

·      Physical e.g. exercise class

·      Social e.g. go to the cinema with a friend

·      Relationships e.g. involve your partner in your flare-up plan

·      Educational/Work e.g. start a course

·      Emotional e.g. challenge negative thoughts, mindfulness, relaxation

To turn these into short-term goals you need to:

·      Break down long-term goals into smaller, attainable and manageable chunks

In order to set the best goals, we should ensure they follow the SMART principle:

·      Specific – be clear about it

·      Measurable – how will it be measured?

·      Agreed – with anyone involved

·      Realistic – achieveable

·      Timed – target time to achieve the goal

Greg (Physio) – 2pm:

I updated Greg on how I was getting on with my physio exercises so far. I then practiced my walking in front of a mirror so I could see where I’m going wrong. I put a resistance band around my knees to give me some feedback and help with proprioception issues. We then did some work on my shoulders because they keep popping out. Greg got me to lift my arms in different ways and felt what my shoulders were doing. Apparently I’m over-using my pectoral muscles and not using the others so my shoulders keep slipping out. He gave me a few exercises to try and improve my muscle strength:

·      Have a resistance band around my hands and lift my arms up in front of me

·      Shrug my shoulders and lift my arms to the sides

·      Lean on a gym ball with my arms, then roll it away from me and back towards me

Meal Prep with Elaine – 3pm:

I decided to try and make a goats cheese and caramelized onion tart, so Elaine let me try a few different knives with special handles while I chopped up the onion. They actually make things a bit easier. I paced my sitting and standing with the help of a stopwatch. Elaine helped me with lifting and carrying. It wasn’t too hard to make, and Elaine brought it over to the ward for me once it was cooked.

Myself and some of the other girls had the tart for dinner – it actually tasted really nice! I then went to the girls’ conservatory for the art group, where we were working with pastels, which was a bit messy! I started feeling really shaky, itchy, my lips started tingling and I was finding it hard to breathe – it felt like something was stuck in my throat. They had to phone the on-call doctor, who prescribed me some Piriton, as we decided I was probably having a mast cell allergic reaction. It helped a bit with my breathing but I still felt very itchy and tired.

Day Seven – Tuesday 23^rd May 2017

I felt really groggy and sleepy when I woke up and was also feeling a bit down.

Your Move – Physiotherapy Gym – 9am:

We had our first session of Your Move for week two. I found it very relaxing again but was finding it incredibly hard with my shoulders.

Greg (Physio) – 9.30am:

We went over some of my exercises from Monday – I told Greg I was finding them painful and my shoulders kept moving, as well as getting pins and needles down my right arm. I practiced my walking whilst engaging my core muscles, which was hard work! Greg then got me to do some other exercises:

·      I stood on a balance cushion then threw and caught a ball with Greg

·      Lay with my knees bent, engaged my core and then lifted each foot a tiny bit off the floor

Chloe (Occupational Therapy) – 11am:

I read my magazine and chatted to the girls while I waited for my next appointment with Chloe. I chatted to her about how my weekend went and she reassured me that it’s really common to feel tearful and get anxious about how you’ll cope after you leave. We decided to focus on sleep for this session. Chloe talked about some of the principles of sleep hygiene:

·      Having a bedtime routine

·      Relaxing

·      Getting away from screens

·      Using your bed only for sleep

·      Sticking to the same sleep and wake times

She then told me a bit about how melatonin works and helps us to sleep:

·      It is a hormone that makes you sleep

·      If light and temperature go down, your melatonin levels increase

·      Your environment can make melatonin go up or down

·      Sensory cues e.g. smells, sounds etc. can induce production of melatonin

·      Routine and habits are important

·      There are also anti-cues, which limit production of melatonin including stress, mental health dip, over-stimulation

We then talked a bit about the sleep cycle and making sure you wake up at the right time.

Anatomy and Healing – 11.30am:

I had to dash back for this session, so was a little bit late. It was led by one of the physios and felt very much like a biology lesson! She talked about blood, bones, cartilage, joint capsules, ligaments, tendons, muscles and nerves. We also then talked about acute tissue healing and also the three stages of healing:

·      Inflammation à Immediately after injury

·      Proliferation à Repair 3-4 days after injury

·      Remodelling à Three weeks – scar tissue is remodeling – this can take up to two years

It was an interesting session, but I found there wasn’t much focus on non-typical bodies, like those of people with EDS. It was all about normal healing, whereas with EDS you take a lot longer to heal, so it would have been more helpful to have more of a focus on that.

After lunch, I fell asleep for quite a while because I was so tired.

Declan (Psychologist) – 3pm:

I thought I would have to ask for another session with Declan, but he came to see me on Monday and put another appointment on my timetable, which was a bit of a relief to be honest. This session was 100 times better than the week before. We talked about how I struggled at the weekend and my worries about going home to having no professional support again. He also asked about my self-harm, so I spoke to him a little bit about that. He told me that he thought I’ve been seriously hurt and let down by mental health and physical health professionals in the past, which I agree with. I then told him that I feel like a lost cause and that there’s nothing left to help me. He said that he wants to do everything he can to help me and offer me hope.

He’s going to contact my local services to try and get me the right support, but said he can’t make any promises. I cried a bit – it’s strange for a professional to actually understand and want to help. He recommended that I look at Arnold Schwarzenegger’s Six Rules of Success and also that I write down all the things I want out of my life.

Pain Talk with Physio – 4pm:

The physiotherapist started the talk by talking about ‘what is pain?’ We discussed the variability of pain and how nerves can malfunction and send the wrong pain signals sometimes. We also looked at what happens inside the brain with regard to pain, especially when it becomes chronic. It was around a concept called central sensitization. She advised us to look into TED Talks by David Butler and Lorimer Moseley, who are doing a lot of research and talking about chronic pain.

I had such a bad stomachache and nausea by dinnertime, so I tried to chat to the others and relax as much as I could. We had a bit of an eventful evening, as one of the nurses got locked in the staff toilet. So we had security and estates people trying to break down the door, as well as half the patients trying to help. I came up in a horrible rash again all over my chest and face, so had to take some more Piriton.

Day Eight – Wednesday 24^th May 2017

I didn’t sleep well at all – I kept waking up every hour in pain and feeling sick. I felt awful when I got up – really faint and dizzy, and my heart was racing. I managed to have some breakfast and tried to drink some water to see if that would help.

Your Move – 9am:

We were meant to have Tai Chi, but as the person still wasn’t here we did Your Move again. I started doing the stretches but could feel myself swaying on my chair – my heart was racing and I felt really faint and dizzy. Thankfully one of the physios spotted me, put my legs up on a chair and got me lots of water to drink, which helped a bit.

I went back to the ward after that and slept for just over an hour. When I woke up I didn’t feel great, but was less dizzy and faint.

Chloe (Occupational Therapy) – 11am:

I chatted to Chloe about my bad night’s sleep and what could have caused it. We came up with a few possibilities including:

·      Increased pain

·      Disturbed by the commotion of people trying to break down the staff toilet door

·      It was too hot

I told her how bad I was feeling earlier and she said it was good that I listened to my body and went and had a nap. We decided to focus on sleep positions to try and reduce pain, dislocations etc. She gave me a few different suggestions including:

·      Lying on my back à Putting pillows under my knees to tilt my pelvis into a more neutral position

·      Lying on my side à A pillow under my top arm to help it not be pulled out by gravity, and a pillow between my knees for comfort

·      She suggested I looked into a maternity body pillow in the shape of an ‘S’

Greg (Physio) – 11.30am:

I talked to Greg about how I’m getting on with my exercises. We chose to focus on my neck, as it causes me so much pain. Greg worked out that I’m using the wrong muscles to hold up and move my head and neck, which could be contributing to my pain. So he gave me a couple of exercises to try and engage deeper muscles:

·      Lay on my back – I had to move as if I were going to make a double chin, but only really gently and I need to make sure I’m not working the big muscles on either side of my neck

·      On all fours with my head hanging down – lift my head and neck as one unit very slightly to work the muscles in the back of my neck

Back on the ward I had my lunch and chatted to the girls.

Coping Skills - Assertiveness – 1pm:

Mel, one of the psychologists, led this group. We talked about the meaning of assertiveness and different styles of communication including passive, assertive and aggressive. For each method of communication, we discussed how each one presented itself and the short- and long-term effects of using them. We then talked about where our communication style comes from, why we find it so difficult to be assertive, why assertiveness skills might be helpful and ways to improve our assertiveness. These include:

·      Body language

·      Listening and understanding

·      Communication

·      Making requests

·      Refusing requests

Recreational Movement – 3-4pm:

I went in my electric wheelchair up to the Aspire Gym this time, as the weather was so nice. It was good to get outside for a bit and have some fresh air. I sat and did a bit of table tennis and badminton, but my right shoulder kept coming out. When I got back to the ward it was really painful.

I tried to sleep but couldn’t, so one of the nurses gave me some ice to put on it and I lay down. We ordered Nando’s for dinner to celebrate a couple of the girls’ final week. I could only eat a tiny bit though because I felt really sick and unwell.

Day Nine – Thursday 25^th May 2017

I slept a bit better on Wednesday night, which was much needed.

Your Move – 9am:

A different technician, who had a really relaxing voice, led this – I was almost asleep! Unfortunately I really struggled with my right shoulder though.

Chloe (Occupational Therapy) – Goal Setting – 9.30am:

I told Chloe about the problems I’m having with my right shoulder – she said that I need to keep my arm supported to help keep my joint in place and stop my muscles going into spasm. We went through some goals for the weekends ahead and I came up with five this week:

1.    Plan and think about what I can put in my flare-up box

2.    Write down things that I do want for my life

3.    Read Arnold Swarzeneggar’s Six Points for Success

4.    Try and do a couple of physio exercises each day, but only a couple – little but consistent

5.    Browse equipment discussed during week two e.g. pillow, knives

Health Promotion Talk – Smoking – 11am:

The lead psychologist led this talk about stopping smoking, which was compulsory for everyone. He talked about the dangers of smoking, what’s in cigarettes and how stopping smoking can improve your health. I personally didn’t get anything from it because I don’t smoke and think they should make it a more inclusive talk. They could focus on a range of risky behaviours alongside smoking such as drinking, drugs, addiction etc. He did ask us for feedback on the whole programme at the end of the talk though, which sparked a lot of conversation.

After lunch we went and sat in the conservatory ready for a Work Support group, but it got cancelled, which was a shame, so I had a rest.

Water-based physiotherapy – 2.15pm:

We went to the Aspire Gym again to use their swimming pool. The physio put a chair in the water for me at the start this time and got us a big jug of water to drink. One of the physiotherapists stayed with me and helped me pace my exercises. I felt really faint, especially getting in and out of the pool, but they really looked after me well.

A few of us decided to go to the Aspire Gym café for a cuppa (or smoothie) afterwards, which was a nice social activity. We then walked/wheeled back to the ward and I slept for a while. After diner I was feeling really low and cried a bit. Nurse Mary came and chatted to me and gave me a hug, which helped a bit. The girls then cheered me up by raising their beds as high as they could (it was a lot funnier that it sounds!) We were in fits of giggles, then spent the rest of the evening chatting with the men.

Day Ten – Friday 26^th May 2017

After getting up, dressed and having breakfast we were meant to have DIY Your Move. John, one of the patients, came and ‘led us’ in a few stretches, which mostly consisted of as all laughing and not doing much else!

Discussion Group – 9.30am:

I assumed we would be talking about our week again, but in this group we were chatting about the concept of pacing. In small groups we looked at an example of someone’s week and had to work out where they were going wrong with not pacing and how they could improve. We then talked about pacing more generally and how we’re getting on with it.

Relaxation – 10am:

Elaine, the technician, led a visualization session about going to a beach. Ordinarily I think I would have found it really relaxing, but I was really struggling and just couldn’t calm down and relax.

I went back to the ward to do some packing. Declan came to see me, asked me how I was feeling and I just burst into tears. He chatted to me for a while and I opened up a little bit about how I’m feeling, but I’m worried about opening up too much because I know that this time next week all that support will be gone. We talked about how to keep myself safe over the weekend.

Everyone else gradually left but my Dad couldn’t get to me until later, so I ended up being the last one there. I started crying again – the tears just seemed to keep flowing and I couldn’t stop them. Nurse Gwen noticed I was upset so she sat with me and chatted for ages, which helped. My Dad and Richard picked me up and we had lunch at Sainsbury’s café. Traffic on the way home was terrible, probably because it’s a Bank Holiday weekend, but we managed to find lots of back roads. I spent the rest of my afternoon watching Hollyoaks and crying. I haven’t been in a great place for a while but I’ve been trying to bury it inside and paint on a smile. I think starting to try and talk about it has just opened the floodgates and now I don’t know how to shut them. Things just feel very dark at the moment and to be honest I’m terrified of losing the support of Stanmore after next week.

You can check out my YouTube channel here, where I have recently uploaded a few new videos (and hope to continue doing!) I will also be uploading some videos about my time at Stanmore.

I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

If you don’t already, please give me a follow on Bloglovin here - I would love to reach 800 followers and we’re so nearly there! I do have a little giveaway planned for when I get there!

What have you been up to this week? I always enjoy hearing about your news and adventures! I’d also be interested to hear if you’ve ever been to Stanmore or are waiting to go.

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