Getting back to blogging after a long break

It’s hard to know how to start this post, as it’s been so long since I last shared anything on my blog! But one of my goals this year was to get back to blogging again, so that’s what I’m trying to do!

 

Blogging is where it all started for me. It’s been almost ten years since I shared my first post – I remember how nervous I felt pressing that publish button and putting myself out there. But, for some reason, I think I feel even more nervous now than I did back then! Perhaps it’s because I now already have an established blog, which I’ve taken so much time away from. Back then, I had an empty slate with no expectations of what I might share. Whereas now, I’ve got ten years behind me of posts – some good and some not so great. I’ve got a degree in Journalism. And I’m obviously a lot older too. It feels like I should be producing amazing content right from the get-go, which is probably just an expectation that I’ve put on myself to be honest! And it’s scary wondering if anyone will actually read my blog posts now. I never had a huge following before, but I was happy with the views and comments I was getting, and they seemed to be heading in the right direction. I feel like I’m starting from scratch again, but maybe that’s not a bad thing.

 

Don’t get me wrong, I’m really proud of my past blog. I put so much time and energy into developing it, curating posts, sharing photos, and building up my audience. But I think it’s also important to acknowledge that, with time and increasing age, I’m going to change and potentially become a different person to the person I was ten years ago. And with that change is going to come a different outlook, different ideas, and different life circumstances. So, it makes sense that my posts are probably going to look quite different to the ones in the past. And that’s OK. There’s nothing wrong with change. 

 

Speaking of change, if you have followed my blog for a while, you’ll probably notice some pretty big changes over here. Firstly, I’ve changed my blog name. I remember trying to come up with a name for my blog ten years ago – experimenting with words, names and attempting to come up with something unique that described what and who I was. I ended up naming it after my cat, Jaffa, who is sadly no longer with me. The name Ramblings of a Jaffa Cat never really made sense. I’d always get questions about what it meant and who was Jaffa - I guess at least it was a talking point! But when I came back to blogging this year, I decided I was finally ready for a rebrand. Again, I spent ages experimenting with words and names, trying to come up with something that would explain who I am and what I’m writing about. But nothing really stuck and everything I came up with just felt a bit gimmicky. So, in the end, I decided to just go with my name – after all, this blog is going to be about me and my life, so what better name to use than my own! Hopefully it’s not something I’ll grow out of either – it feels professional enough that I can use it in my journalistic work, but informal enough to fit with my personal blog too. I’ve included the tag line ‘Disability. Disney. Daily Life,’ just to give a brief explanation of what you might find on my blog, but hopefully it also leaves space for me to write posts about anything that feels important to me at the time. 

 

You may also notice that, because of this name change, that I have a new blog header! Once I decided that I no longer wanted to be Ramblings of a Jaffa Cat, I knew that I would obviously need a new header to match my new blog name. Thankfully, the lovely Helen, who did my last header, was only too happy to help me with this new one, and I’m so pleased with the result. I think it encapsulates everything I hope to talk about – Disability and chronic illness, Disney, and my daily life as a Disabled person. It’s also now possible to use it as a header across all my social media, such as my YouTube channel and Facebook page, giving me a bit more of a cohesive presence. I really like the fact that everything will now be linked together, rather than before, where every outlet was a bit different. 

 

So, what can you expect from my blog in the future? In all honesty, I’m still working that out in my head! I’m hoping to focus on life as a Disabled person, so posts about accessible days out, what to expect from certain hospital tests and appointments, sharing tips, hacks, and products that I’ve picked up to make life a bit easier and just generally what it’s like to live with a Disability and chronic illness. But I also want to talk about things that I love, so you’ll also see posts about one of my biggest loves – Disney! As well as things like beauty, fashion, travel, theatre, and so much more. I can’t really fit myself into a particular niche – there’s just too many different things I want to write about! But I think that’s OK – I guess you’d call it a lifestyle blog and that suits me just fine. 

 

I’m really looking forward to getting back to blogging again. I’ve missed writing so much and have felt really sad about abandoning the blog that started it all. I won’t be able to promise a specific schedule for my posts or say I’ll be sharing, say, two posts a week, as it’s going to completely depend on my health (which hasn’t been good over the last few years – maybe I’ll expand on what’s been going on in another post!) But I do want to make the commitment to just share on here as regularly as possible, so hopefully some of you will stick around to read it! I’m excited to get started!

What posts would you like to see from me now that I'm back to blogging?

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Life Update - An Operation - Derotational Femoral Osteotomy

I want to start today’s blog post with two apologies. Firstly, to apologise for the lack of content in recent months – it’s safe to say I’ve been slacking a bit (OK, so actually my health has been rubbish and so I haven’t been able to write so much). But that’s in the past and there’s not much I can do to change that. And secondly, I need to apologise for the fact there probably won’t be much content going up for the next few weeks at least. Not the greatest place to start a blog post! But I wanted to use this post to give you a bit of a life update and let you know why I won’t be around much over the next few weeks, so at least you know I haven’t completely forgotten my blog!

In short, I’m going into hospital to have quite a big operation – a derotational femoral osteotomy (I’ll explain more in a minute!) It was meant to be happening on Thursday 7^th November, but I had a phone call last week to say it had been postponed. So it is now (hopefully!) happening on Tuesday 12^th November instead. As well as wanting to update you in this post, I also thought it would be useful for others, and myself, to document my journey through the operation and recovery. When I found out I would be having this surgery, I started searching online for information about the procedure. But I found it really difficult to find anything relatable. I did manage to find a couple of people on Instagram, who I have found talking to invaluable. But apart from that, all I found was a lot of medical information, mainly relating to children having the procedure, but nothing written first-hand by adults who have gone through it.

I guess I should probably start by explaining what the operation actually is! In layman’s terms, the surgeon will be making an incision into my right thigh, breaking my femur (thigh bone), rotating it to the correct position and holding it in place with a metal rod. I asked on Instagram if anyone had any questions they would like answering when I made a video and wrote a blog post about this, and one of the main questions people had was ‘why are you having this operation?’ 

It all started a few years ago, when I went to my GP because I was getting a lot of pain in my hips. I have always had problematic hips – when I was born, I had congenital hip dysplasia, which meant my hips dislocated very easily and I had to be fitted with a Pavlik Harness to allow the hip sockets to grow properly around the ball of the hip joints. Thankfully, this corrected the hip dysplasia, but I have still experienced instability, subluxations and constant pain in both my hips. A lot of this was eventually put down to me having Ehlers-Danlos Syndrome (EDS), but as the pain got worse, my GP decided to refer me to my local hospital to see an Orthopaedic Hip Surgeon. After seeing him and having some general x-rays taken, he could find no obvious problem with the hip joints and so the increasing pain was just put down to my EDS. 

But my GP had also made a referral for me to be seen by an Orthopaedic Hip Specialist at University College London Hospital (UCLH) at the same time. This obviously took longer to come through, and when I received the appointment I did contemplate cancelling it, as the local consultant had already told me that there was nothing wrong. But I decided to go ahead with the appointment ‘just in case’ and so, a couple of years ago, I went up to London to see the specialist. After a thorough examination, he sent me to have some more x-rays and a CT scan of the whole of my upper legs. When I went back to see him again, he told me that both of my thighbones were rotated too far inwards, at quite a high angle. This means that the hip joints aren’t sitting properly and so, are moving around in an unusual way, which could be causing some of the pain. It also means that the rest of my leg is wonky too – my knees face inwards, rather than pointing straight out, and when I walk, my feet tend to turn in and I walk on the outer part of them to try and compensate. All in all, nothing really lines up!

To begin with, we decided not to do anything drastic, so I was sent away for six months to see how my symptoms progressed. Unfortunately though, the pain and instability just seem to be getting worse, so we eventually decided that surgery would be the best option to try and rotate the femur back into the correct position. They can only do one leg at a time (because otherwise I wouldn’t be able to walk at all!) and the recovery period is pretty long, so it’s not going to be a quick fix. One issue is, we’re not sure how much of the pain is caused by the deformity in my femurs and how much pain comes from my EDS. So it could be that, we could do this operation and my pain and instability don’t get a whole lot better. On the other hand, it could give me some significant improvement in the long run.

There are risks, as with any operation, although having EDS does make things a bit more complicated as my bones and joints are more likely to move around. I’m likely to be in hospital for at least three days, possibly longer – it depends on when we can get my pain under control, how I recover from the general anaesthetic and what my mobility is like. I will be on crutches for quite a while, as I won’t be able to put my full weight on my leg while the bones fuse back together again. As my mobility is already pretty limited, it’s likely I will have to use my wheelchair a lot more, as I think I’m going to struggle on crutches. We have also had a stair lift installed, which is going to be beyond helpful for getting me up and down stairs when I get home. 

As I mentioned already, the recovery time is pretty long. I’ve read that it can take your femur up to six months to completely heal, and obviously there will be lots of physiotherapy needed to try and get my muscles and joints working properly again after surgery. I won’t be able to drive for at least a month to six weeks, and after then, it will just depend how I’m feeling and whether I could perform an emergency stop. So there’s going to be a lot of hobbling around (well, more-so than usual!) and I think I’m just going to have to take things a day at a time, certainly for the first few weeks.

I think this is the most nervous I’ve felt about any operation or procedure I’ve had, but then this is probably the biggest surgery I’ve had to date. I’m quite anxious about the operation itself and whether everything will go to plan. But I’m also not looking forward to being up in London away from my family while I’m in hospital. Usually, when I’m in my local hospital, my family are able to visit most days. But that isn’t going to be possible while I’m in London, so I need to make sure I take lots of things to keep me occupied while I’m recovering. 

I’m probably most anxious though, about the recovery period once I’m home. It feels strange to me, putting myself through something that I know will make me a lot worse to begin with. Any independence I currently have is going to be gone, and I’m going to be essentially starting from scratch again. I’m going to have to re-learn how to walk and will have to learn to ask for and accept help from the people around me a lot more than I currently do. I am a bit worried about how my mental health will fare, as I know it’s going to be a tough few months getting used to a new normal. But I hope that, once I’m feeling a bit better from the initial operation, I will be able to get out and about a bit with the help of my family, and go and see some of the Christmassy things nearby. 

As both of my femurs are wonky, once I’ve completely healed from this operation, we will have to look at me having the same operation but on my left leg. And my surgeon has also said that this operation can make my lower leg look/feel quite wonky, so it may be that I will need an osteotomy on both lower legs at some point as well. But I’m trying not to even think about those things at the moment and just concentrate on getting through this surgery first!

I think that pretty much describes everything that’s going to happen and I hope it explains why I may not update my blog for a little while. But if you do have any other questions that I haven’t answered, please do feel free to ask, either in the comments or on my social media. As I said earlier, I do hope to try and document this process as much as I possibly can, so I will try and take photos and videos while I’m in hospital so that I can keep you up-to-date with my progress both on here and on my YouTube channel. And if you want to keep up with how things are going on a more day-to-day basis, please follow me on Instagram and Twitter, as I hope to keep them both updated while I’m in hospital. I will also need to be kept distracted while I’m recovering, so I would really appreciate any messages you fancy sending my way!

I’m hoping that, once I’m on the mend, I can start updating my blog more regularly, as I have lots of ideas for posts I want to share! So please don’t forget me while I’m away – hopefully I’ll be back posting again very soon!

Have you had a femoral osteotomy? Or do you have any questions you would like to ask about my experiences of it?

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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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Why Coronation Street's storyline about suicide is so important

*TW – Discussion of suicide that some people may find triggering

The storylines on Corrie recently have been nothing short of hard-hitting. With Bethany Platt’s grooming, David Platt’s male rape and Pat Phelan’s reign of terror, we’re definitely seeing a darker side to one of Britain’s best-loved soaps. But their latest storyline that saw character Aidan Connor (played amazingly by actor Shayne Ward) take his life has had a particularly big impact. It’s very rare that I watch a soap and feel compelled to talk about it, but those scenes of Aidan sitting in The Rovers with muffled sounds of everyone around him laughing and joking really resonated with me. I’ve been there, and it’s a scary and lonely place to be. As someone that has both attempted suicide on numerous occasions and has also lost friends to suicide, I felt I couldn’t pass Mental Health Awareness Week (14^th-20^thMay 2018) by without discussing how important Corrie’s latest storyline is. 

Whilst just the act of talking about mental health and suicide is hugely important, especially for a soap that reaches so many people in their living rooms every day, this storyline in particular addressed a couple of elements that I feel are vital for people to understand. Firstly, the fact the story depicted male suicide is a huge step towards addressing some of the largest myths and misconceptions around suicide, and mental illness more generally. Despite people as famous as William and Harry talking about mental health problems, there still seems to be a stigma around men admitting that they are struggling with illnesses like depression or anxiety. 

But according to a report by The Samaritans, suicide is the most common cause of death for men aged between 20-49, and across the UK, male suicide rates remain consistently higher than female suicide rates – most notably five times higher in the Republic of Ireland and three times in the UK. 84 men take their own life each week. That’s 84 preventable deaths every single week. These statistics just can’t be argued with, and show just how big a problem mental illness is, particularly amongst young and middle-aged men (such as the character Aidan Connor). 

Yet there is still such a culture in our society that men should ‘man up’ and not express their feelings. It’s no wonder that so many lives are being lost when a lot of men still feel that they can’t admit to finding things hard or having difficult thoughts. That’s why Coronation Street bringing up the issue of male suicide is so important. Aidan Connor always came across as a very happy, friendly and popular man who had everything together, even if he did make a few mistakes along the way. I expect a lot of men could probably identify with him, and so by exposing his vulnerabilities and the consequences of him not opening up to his family, my hope is that others will realise that it’s OK to talk about your feelings. 

The other element of the story that I feel is really important is spotting the subtle signs that someone might be feeling suicidal. Since the episode aired last week, I have heard so many people talking about how Aidan’s suicide seemed to come out of nowhere. But actually, in retrospect we can see a few small but important signs dating back weeks and even months. For example, there was a point when Aidan gave away his expensive watch to Maria’s young son, Liam. Maria was slightly puzzled by it and took it back to Aidan, but it didn’t cross her mind that this gesture could be a sign of something more serious. And when Aidan went to visit Eva in the cottage, he asked her to dance and told her he had come to say goodbye. Again, Eva didn’t realise that this was Aidan’s way of tying up loose ends and saying his final goodbyes to those he loved.

Like I said earlier in this post, I have attempted suicide on quite a few occasions, so I know how much I kept from family and friends. On the outside, to most, I probably appeared to be perfectly fine. But on the inside and behind closed doors, I was fighting a battle that I felt I was losing. I also know that I didn’t see the signs in the people I loved who sadly took their own lives, or attempted to. Sometimes these signs can be so subtle or hidden that it’s incredibly hard to spot them and someone’s suicide can appear to happen out of nowhere. 

But there are signs that some people display that could prompt us to ask questions about their wellbeing, and I thought it was important to share these with you. So, warning signs that someone could be thinking about suicide include:

·     Always talking or thinking about death

·     Feeling depressed, anxious or withdrawn

·     Displaying risky behaviour such as driving fast, crossing the road without looking etc.

·     Losing interest in things they used to care about

·     Making comments about being hopeless, helpless, overwhelmed or worthless

·     Putting their affairs in order – tying up loose ends, giving away possessions, changing or making a will

·     Saying things like “it would be better if I wasn’t here” or “I’ve had enough”

·     A sudden change from being very sad to being very calm or even happy

·     Talking about suicide or killing themselves

·     Visiting or calling people to say goodbye

·     While self-harm is not directly related to suicide there is research to suggest that individuals who self-harm are more at risk of attempting or contemplating suicide

As you can probably see, a lot of these signs could easily be missed or not given a second thought, and not everyone will display all (or any) of them. But I hope that by sharing these, it will perhaps make people a bit more aware of those around them and will lead to questions and support if you notice something. But bigger than that, I hope that Aidan’s storyline will prompt more people to speak out about their struggles without fear of being judged. And I hope it will encourage more people to simply ask the question “How are you?” or “Are you OK?” and actually stick around to listen to the reply. We live in such a busy world these days, but simply stopping to talk and listen for a few minutes can be life changing. 

Suicide is preventable, but only if we as a society work together to help those that are struggling. Suicide isn’t selfish or an easy way out. It is a last resort for someone who has become so overwhelmed by difficult feelings that they simply don’t know where else to turn or how to carry on. But by campaigning for better support to be in place, from both mental health services, and us, we can make a difference and save lives. And this Coronation Street storyline is another step towards raising awareness of mental health and suicide.

If you, or anyone you know, need someone to talk to, I can recommend The Samaritans. You can call them free any time, from any phone on 116 123and you don’t have to be suicidal to call them. They also have an email address if you don’t want to talk on the phone, although you won’t get an immediate response – jo@samaritans.org

What are your thoughts on Aidan’s storyline? 

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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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