The Words that Saved Me - A Review (AD Gifted)

A while ago, I received an email from Sarah Mozer, asking if I would be interested in reviewing her book on my blog. Once she’d explained a bit more about her book and the story behind it, I was really keen to work with Sarah, as it sounded like a book I, and therefore my readers, might really benefit from. The back of the book describes it all perfectly, so I thought I’d start by just sharing what it says…

 

“A raw and emotional collection of poetry on life with severe chronic illness. Both heart-breaking and hopeful, these poems follow the story of how as a bedbound twenty-something, I found the courage and resilience to keep going when every part of me was saying give up.

 

The Words That Saved Me was written and compiled over three years from the confines of my bed – beginning in the darkest depths of depression and continuing as I began to find the possibility of peace amongst the pain, limitations, and isolation I was, and still am facing. This book is a reminder of how life can get better even when it truly feels impossible. 

 

Whether you have experienced chronic illness or not, I hope the words in this book resonate with you in some way and that by sharing my soul with you, your soul hurst a little less.”

The book is broken down into sections, starting with an introduction that tells you a bit about Sarah and her experience of chronic illness. She discusses the different emotional stages she has been through during her chronic illness journey, and offers inspiration for others who may currently be in a dark place.

 

Following on from the introduction, the next few chapters take us through the different emotional stages, from darkness, to sparks of hope and finishing with helpful things. I thought it might be useful for me to talk to you about each stage in turn, and how I found the poems in that section.

 

So we’ll start with darkness – a section I can relate to a lot at the moment. The poems in this section are incredibly raw and blunt, communicating the desperate place that Sarah found herself in. As someone who is currently going through a relapse in their mental health, I felt I could really relate to a lot of the poems and how I’m currently feeling. One poem in particular stood out to me – it’s called Frayed and I wanted to share it with you:

 

“How much can I endure?

When is enough enough?

At what point will it all become too much.

I try

And I try

Holding on to threads of hope

As they fray to single strands,

I can’t fight this fight forever.”

 

The book then moves onto ‘The Words I Need to Hear’, and it reminds me of a big hug from a loving friend. As you make your way through the pages, you are reassured and comforted by kind words, just as a best friend would do to you if you were in the dark place spoken about at the beginning of the book. Like I said, I’m really struggling with my mental health at the moment, and I found reading these words a real comfort. Words such as “If all you did today was exist, then to exist was your purpose. Maybe is seems like a waste, but you are here for a reason,’ from the poem Stardust and Magic. 

 

We then progress to ‘Spark of Hope’ where you get a sense of a real shift in Sarah’s mental state. Suddenly, rather than living in darkness, you can feel hope and optimism, albeit fairly tentative. She still acknowledges the darkness and how overwhelming it can be, but you feel drawn into the fact it seems possible to move forward and onto something a bit more positive. I really liked the poem ‘Surrender’ in this section, particularly these lines:

 

“Anger

Frustration

And sadness

Will not help you here.

Put down those weapons

They will only cause you more pain.

 

Instead;

Choose acceptance,

Choose peace.

Find the strength

To surrender to this moment

Exactly as it is.”

 

Following this, we move on to ‘Light in her eyes.’ You can really feel the determination in the poems in this section to live a more positive life and move away from the darkness. Sometimes I find that when you get these positive quotes and sayings that they can feel quite fake or patronising, but these poems don’t feel any of those things. The positivity and determination feels real and raw, like it’s come from a place of real hard work to move forward to that place. Through the poems you can learn how Sarah fought against those dark thoughts and how she continues to fight to live in a more positive place. I really liked the poems in this section, as they made me feel really inspired. I particularly like the poem ‘Believe:’

 

“I don’t know why I am where I am,

Maybe there is no reason or plan.

But I choose to believe

I’m where I’m supposed to be,

Because that is the thought

That sets me free.”

 

At the end of the book are a couple of pages under the heading ‘Helpful Things.’ These aren’t poems but are instead some information that Sarah hopes other chronically ill people may find helpful. She shares a variety of treatments, management techniques and resources that have helped her in her chronic illness journey to living a better quality of life. Whilst unsolicited advice is usually something people in the chronic illness community step away from, it’s interesting to hear what other chronically ill people have found helpful, especially when your illness has no cure or real treatment options.

 

Overall, I’m so glad Sarah sent me her book to review. I found it genuinely inspirational, comforting and relatable. I don’t think you need to be chronically ill to enjoy Sarah’s book either, as I believe the poems could relate to all kinds of situations, not just illness. If you’d like to support a chronically ill writer, you can buy Sarah’s book on Amazon and she is also selling signed copies on Etsy.

 

Have you read Sarah’s poetry book? I’d love to hear what your thought on it are?

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Reflecting on 2020 and my Goals for 2021

It’s hard to know how to start this post after not updating my blog in so long, so I think I’ll just start by saying ‘hello’ again! Being quiet on here since July hasn’t been deliberate. I’ve desperately wanted to share posts and have a growing list of ideas of things I’d like to write about. I’ve just struggled to actually do it! A mixture of my health being decidedly rubbish since my major surgery in November 2019 and a global pandemic affecting both my physical and mental health haven’t made for a very productive Jenny. But one of my goals for 2021 (more on those later) is to really try and start getting some content out on here again, even if it’s just writing little bits here and there. So here I am with my first post of the year! And I thought a good place to start would be to just reflect a bit on the past year and then look forward to the year ahead.

 

Reflecting on 2020

 

Where do I even start with reflecting on the last year?! It’s certainly been a strange and scary one for most of us hasn’t it? I started 2020 having just had major leg surgery (a Femoral Osteotomy). I was spending the majority of my time sleeping, keeping dosed up on various painkillers and having regular physiotherapy. I saw 2020 as my year to recover – to gain strength, increase my mobility and to start doing some of the things I enjoy again as I started to get better. But I hadn’t planned for two things – one, that complications from surgery would make recovery increasingly difficult and two, that we would be plunged into a global pandemic. 

 

I always knew that the surgery came with risks (with added risks on top because of my Ehlers-Danlos Syndrome). But I think when you go in for any kind of surgery, you convince yourself that you will dodge these risks and that things will go smoothly – otherwise you wouldn’t go ahead with the surgery! And a lot of the time, things do go to plan. You have your surgery, it resolves the problem, you make a good recovery and generally your life is better for having that intervention. But occasionally, things aren’t quite so straightforward. And this seems to have been the case for me this time. 

 

The place where they broke my femur has actually been healing quite nicely (albeit rather slowly). But unfortunately, the surgery has affected my knee and nobody seems to know why. As the months have gone on, I’ve been struggling to bend my knee, have been getting a lot of pain and swelling in it and have been finding it hard to put much weight through my leg because of this. It’s been incredibly frustrating, especially as my mobility is now worse than it was before I had the surgery (which definitely wasn’t the plan – it was meant to try and improve it!) 

 

And unfortunately a global pandemic hasn’t helped matters, as it meant my physiotherapy had to stop and I struggled to get appointments with my surgeon. When I did eventually manage to see my surgeon in person, he let me know that because my appointment (and possible treatment) had been delayed due to Covid, there is a very real possibility that I may never regain the full use of my leg again. Devastated is definitely an understatement! I don’t blame my surgeon – he’s just as frustrated by the situation as I am and it’s not his fault we’re in a global pandemic. But I am obviously angry and upset at Covid for potentially losing me the full use of my right leg. 

 

I’m trying to stay as positive as I can in the hope my surgeon can find an answer and that I will see some improvement. But it’s not easy, especially when it’s still so difficult to access services because of the strain of the pandemic.

 

And that brings me on to the second significant thing that happened in 2020 – Coronavirus. It’s obviously been a difficult time for everyone, although we have all been affected in slightly different ways and perhaps some more negatively than others. I can only really talk about the effect it’s had on me and my loved ones, but I don’t want to dismiss the fact it’s impacted each and every one of us and that some people are struggling a lot more than others. 

 

For me, in some ways, I guess I’ve been kind of lucky in a strange, roundabout kind of way. Having been chronically ill for the last 17 years, often spending large parts of my time housebound, being put into Lockdown wasn’t a huge shock for me. Chronic illness had prepared me pretty well for not being able to leave the house. So while a lot of the world struggled to come to terms with staying at home for months on end, the chronic illness community didn’t see our day-to-day lives change particularly. 

 

Don’t get me wrong – it was really hard to suddenly hear everyone complaining about being ‘stuck’ at home, telling everyone that they didn’t know how they were expected to live like this for so long. It was strange to suddenly be surrounded by people living a life that you have lived for so many years without any recognition. All of a sudden things started to be made available to people who couldn’t leave the house. It was possible to work from home, medical appointments could be done via video call, virtual tours were made available for museums and gardens and communities came together to ensure those who were housebound had access to food, medication and company. 

 

For a lot of the chronic illness and Disabled community, these changes were a double-edged sword. In some ways it felt really great to see the wider world being made accessible for the first time. I have friends who were finally able to speak to a doctor after struggling alone for years because they weren’t well enough to get to a physical appointment. But it was also incredibly frustrating and hurtful to see these adaptations be put in place with such ease and speed. We have been asking for them for years and have either been ignored, or been told it simply isn’t possible. Imagine developing a chronic illness, asking your work if they will facilitate working from home to enable you to still do your job and then having to leave when they tell you that the job can’t be done from home. And then, to add insult to injury, someone else is given your job and is then given the adaptations needed to do the job from home. It was possible all along, but only when a situation arose that affected non-disabled people. 

 

I think the way Disabled people have been treated over the last year is one of the things that has affected me most during the pandemic (other than losing the majority of my medical care and the fear of myself and my loved ones getting the virus). I’ve been well aware of ableism growing up, having been Disabled since I was 15. But over the last year it has become so overwhelming that it’s been difficult to escape, even in the safety of my own home. 

 

Constant comments on social media like “Only the elderly and vulnerable will die,” “the vulnerable should just stay inside so the rest of us can get on with our lives,” “the vulnerable should take responsibility and protect themselves – it’s not our job to mollycoddle them” and “why should the majority suffer to protect the few” have been hard to ignore. 

 

Finally being able to leave the house and finding Disabled parking bays have been turned into queuing areas or toilets have been closed has made it even harder for Disabled people to access the world. And knowing that, in the first half of 2020, 59% of all deaths involving Covid-19 were among disabled people was terrifying to hear. 

 

This year, it’s just felt like things have gone backwards with our society’s attitudes towards Disabled people, and it’s been really sad (and quite scary) to witness. I know a lot of Disabled people have found this has taken a toll on their mental health (myself included). So I hope anyone who is reading this that has been affected in a similar way is doing as OK as possible at the moment. It hasn’t been easy (and it’s hard to see things improving any time soon) but you’re doing an amazing job simply getting from one day to the next, so please don’t be too hard on yourself. Apart from my family and friends, the one thing that has kept me sane over the last year is the amazing Disabled community I have found on social media. Perhaps I’ll do a blog post at some point sharing some of my favourite accounts, as feeling a part of a community who are fighting back, showing that being Disabled isn’t a negative thing and supporting each other through this has been a real lifesaver. 

 

Goals for 2021

 

So moving onto this year – I often find it quite difficult to set New Year’s Resolutions and goals to be honest. Being chronically ill, life can be pretty unpredictable and so it can get quite demoralising setting goals and then finding my health just won’t allow me to achieve them. Add into the mix a global pandemic, and it almost feels impossible to look ahead and find things to aim for that I know will be achievable. However, I do think setting myself targets is important, as it helps me to have positive things to focus on and gives me some motivation on those days where it’s seriously lacking! So this year, I’ve tried to set myself goals that I should be able to achieve regardless of what’s happening with the pandemic (and my health to a lesser extent). I’ve tried to focus more on self-care – doing things that I know will help me to feel a bit better physically and mentally – because I think that’s what I need right now. I thought I’d share them with you, partly to give myself some accountability, but also just in case it helps anyone else who’s trying to set goals but doesn’t know where to start. So, my goals/resolutions for 2021 are:

 

Go to bed earlier

 

I’ve always been a night owl, but since the pandemic hit, I’ve got into a really bad routine of going to bed far too late. In some ways it does work for me (I guess that’s why we get into bad habits, because they do serve a purpose, even if it’s not in the best way) but I also know that it’s not the best routine to be in because it leads to me getting up a lot later in the morning and generally just feeling pretty groggy. So I really want to get myself into a better routine of going to bed a bit earlier. I’m not saying I’ll be in bed by 10pm, as that just isn’t how my body works, but I do want to gradually bring my bedtime forward until I get to a place that feels right for me. And I’m hoping it will bring the added bonus of giving me a bit of time to start reading again before I fall asleep because at the moment, I’m just too tired to even try.

 

Get back to doing my skincare routine

 

I used to religiously follow a skincare routine of cleansing, toning and moisturising every day. But when I had my leg surgery, it kind of went out the window a bit and for some reason, I’ve really struggled to get back into doing it. I think part of the reason is because I’ve felt so rubbish since having my operation – I just haven’t really felt like doing anything nice for myself, partly through feeling physically unwell and partly through my mental health not being great. And this is something I want to work on because I know spending a few minutes each day giving myself some simple pampering can make a big impact on how I feel. Even if I start with something very simple – like putting a bit of moisturiser on – I want to get back into consistently making time to look after my skin.

 

Post on my blog more

 

So as I mentioned at the beginning of this post, things were pretty quiet on my blog during 2020. And it’s something I really want to change. My blog is where I first started creating content before I expanded to Instagram and YouTube, so it holds a special place in my heart. I love writing and taking photos – it just ended up falling by the wayside a bit recently as my energy was being used for other things. I don’t want to compromise on creating content for my other platforms, so I need to try and manage my time a bit better so I can start getting some more posts on here. Apart from my energy levels, I think one thing that continually stops me posting on here is not feeling like my work is good enough. Comparing my photos to other bloggers who take the most beautiful pictures, doubting myself over whether I have something interesting or useful to say and worrying that, because I can’t get out much, what I post won’t be interesting enough – I’m constantly telling myself that there’s no point in trying because it won’t match up to what other people are doing. But the more I think about it, the more I realise how ridiculous that all sounds. I follow a whole variety of content creators and the things that they post are so diverse, and that’s why I like them. And even if no one wants to read my ramblings, I enjoy writing them and taking the photos, so I think that’s the most important thing to focus on. 

 

Be open-minded about treatment for my leg

 

As I’ve talked about in this post, my post-surgery recovery from my Femoral Osteotomy has not been going to plan. To begin with, I was quite fixed with my ideas of what was causing the problems (I thought it was all down to the rotation issues with my lower leg, and believed that by having that corrected, everything would be fixed). But, with the help of my surgeon and other medical professionals, I’m starting to realise that it probably isn’t as ‘simple’ as that, and it may be a case of a number of problems going on that we have to deal with (i.e. muscle and nerve problems too). Because of this, I feel like I need to try and be a bit more open-minded about possible treatments I’m being offered. It’s not discounting that I’m likely to need further surgery at some point to correct the misalignment in my lower leg (and possibly sorting out my other leg at some point!), but just recognising that it’s probably not a straightforward issue and that I may have to have other treatments to get me to a place where surgery can be considered. 

 

Less mindless scrolling

 

It’s only fairly recently that I’ve realised just how much time I spend scrolling through social media on my phone and how much of a negative effect this has on my mental health. I definitely think it’s got worse since Covid came along – perhaps because there’s a bit more time, but also because I think I’ve got a bit drawn into reading comments on news articles on Facebook, which really isn’t good for my mood and anxiety levels! I have a bit of a love/hate relationship with social media – in some ways, I find it completely draining, while in other ways, I find it a great place to keep in touch with friends and to feel part of an amazing community of disabled and chronically ill people. So I guess I just want to make sure I’m using it more mindfully, in ways that make me feel good. I’ve already decided not to look at Facebook before I go to bed because I know it just triggers my anxiety and doesn’t help my brain to wind down. And instead of just scrolling and scrolling, I want to use the time I’m on social media to create more content, reply to more messages/comments and interact with users who make me feel happy and empowered. 

 

Be kind to myself

 

This last resolution is probably my most important one, but is also the one I know I’m going to find the hardest. I’ve never been very good at being kind to myself. It’s a major underlying theme of my mental health problems and I can trace it right back to my childhood. But I know it needs to change if I want to keep as well as possible. I know it’s a bit non-specific, but that’s kind of deliberate, as if I make it really specific, it will just be another thing I can use to berate myself when I don’t achieve it. I’d rather see it as an overarching theme, rather than a set goal. It could include things like not giving myself a hard time if I have a day where I don’t achieve one of my goals, letting myself start the next day afresh, cutting myself some slack when I’ve felt too exhausted/unwell to do anything but get out of bed and eat. There’s a never-ending list of little things I can do to just be a bit kinder to myself, so I just want to try and be more conscious of my thoughts and actions towards myself and to continually question whether I would treat a friend the way I’m treating myself. I’ve got a long way to go to get to a place where I accept and even love myself, but starting small and making the first step is the only way to start.

How did you cope with 2020? Do you have any goals for the year ahead? And do you have any advice that might help me with mine? 

 

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Our Experience of Dementia

If you follow my YouTube channel then you might have seen I recently made a video about our experience of Dementia. I thought I would also write a corresponding blog post about the topic, as I know different people prefer to consume different types of media, and I think it’s an important subject to talk about with as many people as possible. 

One of the reasons I decided to talk about our story is because, on the 13^th June, the Alzheimer’s Society organised a national Cupcake Day in order to raise awareness of dementia and to raise money in the fight against it. Their reason for using cupcakes was:

“In the average time it takes to bake a batch of cakes, six people in the UK will develop dementia. It is now the leading cause of death in England and Wales, overtaking both cancer and heart disease.”

With the number of people who develop Dementia, I would be surprised if you didn’t know someone that had/has the disease. Unfortunately, it’s something that has touched my family’s lives and mine deeply, and so today, I would like to tell you all about my Gran. Rather than launching straight into all the awful things dementia brings, I want to start by telling you who my Gran was and what she was like before the dementia hit.

My Gran was called Patricia – some people called her Pat, some called her Trish – but I just called her Gran or Granny. She was born on the 5^th December 1923, at home in Wembley, London. A few years later, her younger brother, Robert, came along too. I don’t know a huge amount about her early childhood – we’ve looked through some of her things, mainly from her adult life, but there are still photo albums and papers that we need to go through at some point.

I started to find out a bit more about her when she became a bit older and joined the W.R.N.S (Wrens), which is otherwise known as the Women’s Royal Naval Service, during the Second World War. She was one of the first female commissioned officers to be in the Wrens, which is a pretty monumental thing for any woman to do! When she joined, like all the other recruits, she had to take a compulsory sight test. Unfortunately, she was blind in one eye and had been for as long as she could remember. But this wasn’t going to stop her from helping her country. Instead of giving up, she memorised the whole sight test – where every letter on the chart was – so that when she went to be tested and her good eye was covered, she could give the illusion that she was able to read the chart. Although perhaps not the best thing to do, it just shows what kind of person she was. She wanted to pitch in with everyone else and do her bit for her country. 

In the Wrens, she worked as a secretary and was in charge of a team who typed up the orders for the D-Day Landings. They were all hidden away in a secret building, which was obviously closely guarded to stop any enemy infiltration. She always used to tell us how, if they wanted to go to the loo, someone would have to escort them there, wait for them to go and then bring them back to the room again in order to maintain the highest level of security. I can’t imagine what it must have been like to be typing up something like that, although I guess at the time, they probably didn’t even realise what an important part of our history it would become. But knowing she played her part in getting us our freedom makes me very proud.

After the war, my Gran continued to work as a secretary and married Alan, my Grandad, in 1952. A few years later, in February 1957, my Mum came along. As my Mum grew up, the family moved around a bit, starting with moving to Harpenden and then on to Felixstowe. That’s the first place I remember them being, as I lived in Felixstowe for the first couple of years of my life and when we moved to where we live now, we would often go back to visit my Gran and Grandad there. 

I have very fond memories of my Gran and my Grandad growing up. We were very close to them and they really doted on my siblings and I. In the summer holidays, I would go and stay with them for a week, and used to love having my own little holiday there with them. They would take us to the beach, we’d go to the pitch and put, go out shopping with them and my Gran would always bake cupcakes with us. I loved them both, but my Gran was always on the ball and so incredibly caring. I remember her hugs being the absolute best! If I could go back in time to those happy days with them, I would go in a heartbeat. 

As her and my Grandad got older, they decided that they wanted to move to be closer to us. Felixstowe was a fairly long drive away, and if anything happened they wanted to be close by to family. They moved to somewhere called Fleet, which is about a fifteen minute drive from where we live, and lived in a flat with a warden who was there to look out for all the older residents. Their time in Fleet to begin with was very happy. It was lovely having them closer to us, as it meant we could see them more, and they seemed to settle in well to their new community.

But in 2007 everything changed in a matter of minutes. My Grandad had a massive stroke at home, and when he reached the hospital we were told to prepare for the worst. They didn’t think he would make it through the night. But I guess they didn’t know how determined my Grandad was, because he proved everybody wrong! He recovered enough to not be deemed in a critical condition any more, but unfortunately the stroke had still had catastrophic consequences. He was no longer able to speak, eat or walk and had become incontinent. After being moved around various hospitals for rehabilitation, he was eventually moved to a local nursing home. The most painful part though, was that his mental ability hadn’t changed. It was obvious he still knew exactly what we were all saying and understood everything that was going on – he was just trapped inside his body. I can’t imagine how difficult that must have been for him.

Looking back, I think this was a huge trigger for my Gran’s dementia. I can’t say that it caused it completely, because dementia is a complicated thing, but certainly the stress and grief that came with my Grandad’s change in health seemed to set off a spiral in my Gran’s wellbeing. She was now living alone in their flat and found it incredibly hard accepting the situation my Grandad was now in. It was like grieving for the person she loved, yet he was still alive. 

It was around this time that we started to notice that things weren’t quite right. She would sometimes stumble over her words or struggle to find the words she wanted to say. This brought with it huge amounts of frustration and we noticed her also becoming more anxious, but it wasn’t really enough for us to be able to put our finger on anything or bring in the doctor. We thought it might just be the stress of my Grandad’s illness, having to live alone for the first time in years or just signs of getting older. How wrong could we be?

My Grandad defied all the odds and continued to live in the nursing home until he died, three years later, in 2010. Over those three years, we had continued to notice a decline in my Gran, although she was still living fairly independently, with the help of regular carers. It’s so difficult in the early stages to judge whether it is just normal aging and a slight forgetfulness, or if something more is going on. If we went through it again now, then perhaps we would notice sooner, but at the time we just didn’t know that much about dementia. 

After my Grandad died, we began to notice a much bigger decline in my Gran’s functioning. We would get phone calls from the carers saying that they had left her with her evening meal the day before, and the next morning it would still be sitting on the table untouched. She was also becoming a lot more agitated and upset, mainly due to her memory loss and the frustration she felt at not being able to remember things. We were also getting a lot more phone calls from both the warden and the staff on her helpline button saying she had fallen or that she was very agitated/upset about something, so my Mum especially was driving back and forth between our house and her flat constantly. 

One particular phone call that I will always remember came quite late one night. It was from the warden, who told us that she had found my Gran walking around the car park in her nightclothes in a very distressed state. It turned out my Gran had thought that we were going to pick her up, so she had gone outside, without her key, and then couldn’t get back into the flats and so had got really scared and upset. This is when we realised that this wasn’t just ‘normal’ aging and that something more serious was going on. The current situation wasn’t working for anyone – my Gran was starting to put herself in danger because of her confusion and my parents were exhausted from driving back and forth between our house and her flat so often. Something needed to change.

So we spent a lot of time considering what the best next move should be. We considered a nursing home, but were really concerned that my Gran wouldn’t settle in one because of her confusion. In the end, we decided to move her in with us, so we turned our downstairs study into her new bedroom and she came to live with us permanently in 2011. 

Over the next four years of her living with us, things just got progressively worse. She eventually got to a point where we started getting doctors involved and she was then officially diagnosed with dementia, although we had already suspected that would be the diagnosis. Unfortunately, although the diagnosis gave us a name for what was going on, it didn’t bring with it any real treatment or hope. She tried a few different medications that can help with some of the symptoms, but in her case they either made her symptoms worse or turned her into a complete zombie, which we didn’t want. In the end, we were discharged from the psychiatrist and were left to cope with how things were going and find our own ways to try and manage.

Her dementia definitely went through quite defined stages. To begin with, there would be times when she was really confused, but then other times where she was quite lucid and, to the outside world, probably looked like any other person. I think for her though, this was one of the most difficult phases, because she still had that awareness and knew that she was getting confused, which led to a lot of frustration and anxiety. 

She would tell all sorts of stories – for example, she was convinced that they were building underwater bungalows at the bottom of our road. She told everyone about them and asked how they were getting on all the time. In the end, we had to take her out in her wheelchair to show her they didn’t exist. Another time, she told her carers that we had been burgled in the night and that she had hit the intruder with a frying pan to get him out of the house, and then had gone to the locksmith to get all the locks changed. At first, the carers believed her because she sounded so convincing and she truly believed these things were happening. 

Looking back, it sounds quite funny now, but at the time it was heart breaking. We learnt not to challenge her or argue with her when she came up with these stories because it only made her more upset. The only times we had to correct her were if it would put her in danger or if it was something she genuinely needed to know. She would often forget that my Grandad had died, so time after time we would have to break the news to her and she would react as if it were the first time she had heard about it. It was a horrible situation. 

During this phase, her eating also changed. Years before, she had been diagnosed with Type 2 Diabetes and since then had always been very careful about what she ate. But now, she would just eat and eat and eat. It was like there was no regulation from her brain on when she felt full and she honestly couldn’t remember that she had just eaten. She would finish a meal and we would sit her back in the lounge, and then she would ask us when it was time for her breakfast/lunch/dinner. Because she couldn’t remember having eaten anything, she would get quite cross with us because she thought we were lying to her and not letting her eat, which was particularly difficult. 

Then things changed again, and the next phase of her dementia seemed to kick in. She became incredibly emotional, tearful and anxious all the time. She wanted someone to hold her hand all the time and was absolutely terrified of falling. It was very difficult to comfort her because a lot of the time, she didn’t understand what she felt so upset about, and if we did calm her down, she would soon forget and the process would start again. 

In this time, her eating was flipped on its head. She went from eating loads, to not eating very well at all. It sounds awful, but it was almost like she had regressed back to being a child. She would refuse to eat her vegetables or anything healthy, and all she wanted were cakes, puddings and anything sweet. But unlike a child, you couldn’t reason or explain things to her because she simply didn’t understand. And in the end, after speaking to our doctor, we just had to give her whatever she would eat because it was either that or nothing. 

And more and more of the time it became nothing. She would often just sit and look at the food in front of her, but wouldn’t eat it. Even when we asked her if she was going to eat it, she would say yes but then not do anything. It was as if her brain just didn’t make the connection between the food in front of her and needing to eat. She didn’t know how to pick up her cutlery or how to feed herself, and I don’t think she actually felt, or understood that she felt, hungry anymore. At this point we resorted to having to feed her to get some kind of nourishment in her.

This phase just seemed to get worse and worse as time went on. As well as being very emotional and agitated, she also started to become aggressive. It was horrible to see because she had always been such a kind hearted, gentle person – it just wasn’t her any more. She would hit and bite her carers, often through fear because she didn’t understand they were trying to help her, but her aggression would also come out with us as well at times, although with us (and my Mum especially) it was more verbal than physical. I know my Mum really struggled with the person my Gran was becoming because she was so far removed from the Mum she used to know. 

It was getting to the point where she didn’t really know who we all were any more. She would often refer to my Mum as a member of staff – I’m not sure if she thought she was in a care home or something – but she would regularly tell my Mum that her daughter never comes to visit her. And even when my Mum explained that she was her daughter, my Gran just couldn’t see that. But she still desperately wanted someone with her all the time because she was becoming more and more fearful and upset about things. It became incredibly difficult, especially at nighttime when she would constantly call out for help and want someone to be with her. She couldn’t be left alone in the house, which obviously had a big impact on our lives as well, and although we had managed to get a couple of hours of respite care, the majority of the caring came down to us as a family, and my Mum especially. She couldn’t walk, so had to be hoisted, she was incontinent, she needed help with eating and drinking and just generally needed a lot of emotional support.

By this point she was barely eating anything at all – she just didn’t seem to know what to do with food, even when we tried to feed her. Because of this, she was losing a lot of weight and became incredibly thin. It was a stark contrast to how she was when she was well because, although she hadn’t been fat, she had always really enjoyed her food. It was also impossible to give her any medication because she simply wouldn’t take it.

Getting medical care for her was also incredibly difficult because she could no longer leave the house. Thankfully we had a brilliant GP who would come to visit her, but apart from those visits we were pretty much on our own. We did manage to get a couple of hours respite care a week from The Princess Royal Trust for Carers and it was honestly a lifesaver. It gave my Mum a bit of time to herself and meant she could actually leave the house without worrying that my Gran wasn’t getting the care she needed.

I feel awful saying it, but some days we would just wonder when it would all end. We loved my Gran so very much, but this wasn’t really my Gran any more and it was incredibly hard some days to find that love we had for her and keep caring for her. I hate saying that because it makes it sound like we didn’t love her or that we resented her, and of course that isn’t the case. It is just incredibly hard seeing someone you love change beyond all recognition and fade away before your eyes. We had no idea that dementia could be this devastating and had no idea just how much of a person it could take away. 

In the November of 2015, my Mum had gone out early to take my sister to the hospital to sort out a broken arm, so it was left to my Dad and I to wake my Gran up in time for her carers to arrive. On any other day, I would have gone and opened my Gran’s bedroom door to wake her up myself, but for some reason on the 18^th November 2015, I decided to wait so my Dad and I could do it together. We opened the door and said our usual “Good Morning” but it quickly became obvious that something wasn’t right. My Gran had, sadly, died in the night. 

The whole situation affected me a lot, and I ended up having to have bereavement counselling afterwards. I had never seen anyone dead before and without going into too much detail; it didn’t look as peaceful as you’re often led to believe in TV and films. My Dad phoned my brother straight away – he’s a paramedic and was at home, so he said he would come straight round to do some checks on her. I also rang our Doctors Surgery and asked if I could speak to a doctor. I was told I could have an appointment for two weeks time, and at that point I think I just burst into tears and told the receptionist that my Gran had died in the night and I didn’t know what to do. She was absolutely lovely, reassured me (she knew who I was, and knew that my Gran had a Do Not Resuscitate order) and organised for a Doctor to come to the house to certify the death.

Waiting for the doctor to come was the strangest wait I think I’ve ever had. I knew my Gran was lying in her room not alive any more, so I couldn’t just go and get on with the rest of my day as if nothing had happened. We ended up all just sitting around talking about nothing in particular until the Doctor arrived. He organised for a private ambulance to come and collect my Gran to take her to the funeral directors. But my Mum still wasn’t back, and therefore still didn’t know what had happened. We were terrified that she would get back to see a private ambulance on the driveway, or, even worse, that they would want to take my Gran away before my Mum got home. Thankfully, my Mum arrived home before the ambulance got here. We had to break the news to her and then she wanted to go and say goodbye to my Gran.

Seeing my Gran being taken out of the house in a body bag was the moment that really set off my tears – I think it made the whole thing seem very real. After she had gone, the house felt really empty. Despite my Gran fading away both physically and mentally, she had taken up a huge space in our lives, so for that to suddenly be gone was incredibly strange. All of a sudden, we didn’t have her carers coming in four times a day. My Mum didn’t have to care for her 24/7 – she didn’t need to prepare her meals, to do all of the extra washing, to sit with her in the middle of the night. All of a sudden, there was just nothing. 

Saying goodbye to my Gran, both at the funeral directors (I decided to go and view her body) and at her funeral, was a surreal experience. In many ways, I had already said goodbye and grieved for the Granny I knew and loved for so many years. But despite my Gran not being 'her' for the last four years, there was still so much to say goodbye to and so much to grieve for.

Before my Gran became ill, none of us had any idea what dementia really was. We learnt very quickly that it isn’t just being a bit forgetful or confused – there is so much more. It’s forgetting who those around you are, it’s forgetting who you are. It’s forgetting how to eat, how to walk, how to use the toilet and how to communicate. It’s losing your whole self, bit by bit, and not being able to do a single thing to stop it. It’s devastating.

And that’s why I wanted to share my family’s story. To help people understand just how devastating a dementia diagnosis can be. So that people can know the signs to look out for, and so that we can all be a bit more understanding if we meet someone who might not be acting like everyone else. As I said at the beginning of this post – more and more of us are living longer and more and more of us are developing dementia. We need to support charities like the Alzheimer’s Society who are doing research so that, one day, we won’t have to suffer in the way we have seen our loved ones suffer. 

I’d be really interested to hear your thoughts on dementia – have you known someone with the disease, or have you learnt something from hearing our story? It’s also never too late to fundraise for the Alzheimer’s Society, so please do consider them when you plan your next fundraising challenge

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Time To Diagnosis - EDS Awareness Month

This month is EDS Awareness Month and although I like to raise awareness of EDS throughout the year on my blog and YouTube channel, May is particularly important when it comes to talking about Ehlers-Danlos Syndrome (EDS). Over the years I’ve posted a range of things on my blog about my health, including writing about my Invisible Illness Story, how I got my EDS diagnosis and about Week One, Week Two and Week Three on the Stanmore Rehabilitation Programme. It can sometimes be a challenge to think of something different to do each year to help raise awareness, but this year I’m taking the lead of EDS UK and am going to talk about the time it took for me to get a diagnosis.

Getting a diagnosis of EDS is rarely easy, and after speaking to friends and those in support groups I’ve realised I’m far from alone in waiting years to receive the correct diagnosis. As well as feeling comforted that I’m not alone in my experiences, I also feel massively sad that so many people have to go through the damaging journey that I’ve been on. As I’ve already spoken in a previous post about the logistics of how I got my diagnosis, I want to use this post to talk about why EDS isn’t being diagnosed more quickly, the affect this length of time has on people and what we can be doing to improve this situation.

So, why are patients waiting so long for a diagnosis?

Ehlers-Danlos Syndrome is classified as a rare disease, although it’s thought that the Hypermobility type is most common and affects more people than are documented. I’m obviously no expert when it comes to the training doctors receive and what happens when they qualify, so I can only comment on this from my perspective, after discussing the issue with medical professionals I’ve seen. 

Very early on in my diagnosis journey, I heard people with EDS being referred to as (medical) zebras. I didn’t really understand why and for a while I assumed it had something to do with their stripes. But then I was made aware of a saying that doctors are generally taught in medical school:

“When you hear hoof beats in the hallway, think horses, not zebras.”

This probably sounds like a bit of a random saying, but it’s an analogy that tells doctors that when presented with a symptom/set of symptoms, they should use their common sense and look for a simple or more expected cause first, rather than searching for something unusual. This probably works fine in the majority of medical cases, with a lot of people finding that their symptoms are caused by something fairly straightforward or at least something expected. However, this isn’t the case for everyone, and this is where doctors need to start looking for the zebras (i.e. rarer causes) instead of horses.

Now this would be fine if medical intervention always worked in this way. But unfortunately it doesn’t seem to happen. I’ve lost count of the number of people with EDS I have spoken to who had their symptoms misdiagnosed as conditions such as M.E/CFS, Fibromyalgia, Depression, Anxiety, Psychosomatic Disorders…despite the symptoms not actually fitting with that diagnosis. I know for me, I received an M.E. diagnosis at the age of 15, and was told by the doctor that diagnosed me that she didn’t really think it was the right diagnosis but she didn’t know what else it could be, so we would just call it M.E. for ease. It still surprises me to this day that this kind of attitude is encountered so often by patients who are then found to have a rare disease. 

What this doctor should have done, if she had reached the ends of her expertise, was to refer me on to a higher specialist who could look in to more rare (zebra) causes for my symptoms. But this didn’t happen for me, and it doesn’t happen for so many other people with EDS too. Instead, you get stuck with a diagnosis that is, at best, incorrect, but also more often than not, hugely damaging in that it stops you being listened to, taken seriously and from receiving any kind of treatment or support. 

So how does waiting all this time for a diagnosis affect someone with EDS?

I can’t speak for every single person with Ehlers-Danlos Syndrome because everyone will have their own journey to diagnosis and will be affected by this in different ways. But I can tell you how waiting 25 years to receive an EDS diagnosis affected me. Throughout my childhood, even though my symptoms weren’t too bad, I still had various issues that I needed to see a doctor for. At that point, I just tended to be labelled as clumsy or as an anxious child. But at the age of 15, when everything started to spiral, the reality of fighting for a diagnosis became more and more clear. 

To begin with, when you’re going back and forward to the doctor and having various tests, you feel like things are at least moving forward towards a diagnosis. But with every test that comes back negative, things start to get harder. Soon, you’re at a point where your doctor doesn’t know what else to do – you may have had a couple of referrals and an array of tests, but they’ve reached a point where they can’t do any more. This was when I was incorrectly diagnosed, and because of the complete lack of serious research into M.E., it was an ‘easy’ diagnosis to give me because it basically meant they could stop trying to offer any kind of treatment, answers or support because there were none. 

Having that wrong diagnosis and coupled with my mental health problems, I had got to a point where no one would listen to mine or my family’s concerns any more. Any new or different symptom was just put down to the M.E. or I was accused of being a hypochondriac/attention seeker/making it up. Just imagine being really quite unwell – having your body fail on you time and time again – and simply being told to go away and get on with it. Every time I questioned my diagnosis I was shot down and no matter how hard I tried, I just couldn’t get someone to take me seriously and understand that they should be looking at more unusual causes for my symptoms.

As the years go past and you’re in this continual state of being chronically ill, not listened to, dismissed and using every last ounce of energy you have to try and fight to be heard, your body and mind continue to break. For me, things went on for so long, and got so bad, that I ended up in a psychiatric hospital twice, once under section. And, of course, as soon as anything like that happens, you immediately get stigmatised and anything you say or do is put down to mental illness. I was (and still am) mentally ill and I’m not ashamed to admit that. But one of the biggest contributors to my mental ill health was the fact I did not receive the correct physical diagnosis for 25 years. The constant fight with medical professionals, hours of tears over failed appointments and unhelpful test results, the never-ending pain and fatigue plus the fact my life was passing me by while I was stuck in this permanent hole of despair all just got too much for me. Going through that for 25 long years and facing constant stigma, comments and judgements is enough to make anyone break.

I’m just so thankful that, after 25 years, I somehow managed to find a brilliant GP who made the right referrals and spotted what was going on. If my GP hadn’t made that first referral to my local Rheumatology service, I honestly don’t know where I would be now. I was so close to giving up on life back then, that I’m not even sure I would still be alive. 

I remember a comment I received from a locum gastroenterologist at my local hospital before I was diagnosed, and every time I think of that comment, it just completely floors me. As we spoke about the fact there was a possibility that I might have EDS and that this could be affecting my digestive system, he simply said:

“Well, you can’t possibly have EDS because I’ve seen another patient with it and they have (these) symptoms. And you don’t. And even if you did have EDS, there’s no point in getting a diagnosis for you because no one will be able to do anything about it. You should just go away and get on with your life.”

This, to me, just demonstrates the naivety of this doctor, and I know it’s not just this person that thinks these things. Firstly, just because EDS patient one has certain symptoms, it doesn’t mean that EDS patient two will have exactly the same type and severity of those symptoms. Yes, we may have the same diagnosis, but we are also all individuals and the same condition can affect people in many different ways. And secondly, thinking that there is no point in giving someone a diagnosis because there’s no cure is ludicrous. I believe, certainly for me; that knowing what is wrong and what I am dealing with is massively important for my mental and physical wellbeing. I know there is no cure for EDS. But I also know there are things I can do to try and help myself. If a symptom flares up, I generally know why and know when to start worrying about it. And when I’m referred to a new specialist for a certain problem, they know I have EDS and so have a better understanding of what the problem could be caused by. I know some people don’t like labels, but I cannot comprehend how withholding a diagnosis like EDS would ever be helpful to someone. 

So, how can we improve the time it takes to get a diagnosis?

I guess this is the million-dollar question we’re all asking! And I don’t think there’s an easy answer or a quick fix. One of the biggest things that we can do is to raise awareness, which is where EDS Awareness Month comes in. The more we talk about EDS – whether that’s to our doctors, to friends and family or more widely on social media and beyond – the more people will start to understand. They will know some of the signs and symptoms to look out for. They will feel empowered by knowledge when they go to their doctor, knowing that an EDS diagnosis is a possibility. And with the help of EDS UK, medical professionals will also learn more about Ehlers-Danlos Syndrome and the signs and symptoms to look out for in their patients. They will know that, although they should usually look out for horses, sometimes they need to look a little further in case there’s a zebra instead. 

If you want to help raise awareness this EDS Awareness Month, you can join in with EDS UK’s 'Time To Diagnosis' initiative. They are looking for people with EDS to tell them, through a video or photo, how long it took them to receive a diagnosis. You can either do this by submitting your contribution here or by posting a photo on social media using the hashtag #timetodiagnosis and also tagging @ehlersdanlosuk

How long have you waited for a diagnosis? Will you be sharing your photo on social media too?

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