I’m Doing Okay

I feel really uneasy publicly saying that I’m okay and that things are going well. Not because I need validation around being ill, but because I am a little bit scared that somehow talking about things being okay will jinx the situation and things will start going very wrong. But I can’t live my life in fear and actually, for the first time in a very long time, I am happy, content and enjoying life. Obviously the whole corona-coaster thing is problematic and it throws up issues, but as I said in my post about dealing with lockdown and mental health, I am coping amazingly well.

So what has changed?

A few weeks ago, things were not this good. The exact opposite in fact. As it happened, the referral into the mental health team, that was suggested, was refused and the additional meds that I was put on didn’t work for me, and I think that this is the best thing that could have happened. I decided to take control of my own life and to stop coasting through, depending on other people. It came down to mind over matter, although I want to make things very clear at this point, that I do not think that this is a clearcut “cure”, not for me or for anyone else. My problems haven’t magically disappeared, but I made the choice to start addressing things, instead of self destructing and living in a mindset where I had given up.

I know and accept that I still need help, but I want to be in control of that help and to get support in a way that I find is beneficial for me. My experiences with the community mental health team were poor, I would leave appointments feeling worse than when I entered, I was made to feel like I wasn’t sick enough to receive help, despite being very unwell and I felt that I wasn’t in control of my own life or choices. I’m still engaging with therapy but for the first time ever, I am viewing it very differently. I have been having therapy in varying forms for years and years and had always just accepted that I would have therapy for life and that was that. But now, without setting myself a time limit, there are certain things that I know that I need to work on, and more importantly, I feel ready to work on. It’s not going to be an overnight thing, it is still probably going to take years of work but I’m not going to just tread water and not move forward.

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Olive and Frank

I’ve also learnt what works for me and what doesn’t. My choice has been to engage with services such as Mind and other local charities, and dip in and out when I need support. I’m not pinned in and it isn’t time limited. Plus, the wellbeing workers who I have met before, are all good eggs and genuinely care and want what is best.

Most importantly, I am making plans for the future. I’m using my time off work sensibly and working on continuing professional development, as well as undertaking various online courses to improve my CV in the long run. I’m really excited to say that I have applied for a masters degree in social work and I’m currently going through the agonising wait in hearing back from the university. I am making plans around moving out and setting myself goals in achieving that.

It’s crucial to say, I am not naive. I don’t think that I am magically better. There are still things that I am struggling with, a lot, but I am accepting those things and being honest about them. My physical health is still problematic and causes its own limitations and that is always going to be something that I have to work around. I’m also not kidding myself into thinking that my mood and ability to cope will not, ever, fluctuate again. But I kind of feel more prepared for that. Small steps. That’s all anyone will ever ask for.

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Ehlers Danlos Awareness Month – FAQ

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May is Ehlers-Danlos Syndrome Awareness Month, and so far, I have been pretty quiet about it. However, now seems like a good time to answer some questions about EDS, that I am frequently asked.

What is EDS?

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue in the body. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones and make up over 20% of our bodies. There are 13 different types of EDS, caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents, or in some cases, the faulty gene isn’t inherited and can occur in a person for the first time. The most common type of EDS is Hypermobile EDS (hEDS, formally known as type 3) . Rarer types include classical EDS, vascular EDS and kyphoscoliotic EDS.

Does it hurt?

The simple answer to this is yes, it does hurt. I am on painkillers daily. These reduce some of the pain and symptoms that I experience but they don’t get rid of them. In some ways, I’ve got used to being in pain, so a lot of the time, I’m able to block it out and I’ve learnt to live my life around pain. I’ve got a fairly high pain threshold (never cried after breaking a bone kind of high). When I have an EDS flare, things can become more difficult because my pain levels become harder to manage. In these situations, I often have to increase the medication that I take and I’m usually found attached to a heat pack or hot water bottle. Increasing medication comes with its own issues, such as more side effects, so taking more medication isn’t something that I like to do.

Have you tried…?

Probably, yes. I have tried so many things to try and alleviate symptoms, with varying levels of success. Kale hasn’t cured me, nor has a clean eating diet. Similarly, eating quinoa hasn’t cured me. Different things work for different people, EDS affects every single person differently, so whilst a hot bath with epsom salts works for me, it might not work for one of my friends. Aside from medication and heat therapy, I have regular physiotherapy appointments, where my joints/tendons are put back into place or I have ultra-sound therapy, which is a non-invasive way of reducing inflammation in the body.

How did you catch it?

I didn’t. I was born this way baby. Ehlers-Danlos Syndromes are genetic conditions, so I have had EDS all of my life, I just didn’t know. As far as I know, no one else in my family has EDS, meaning that despite being symptomatic since the age of nine or ten, I wasn’t diagnosed until the age of twenty two, as no one was looking for it, or suspected it. EDS is also classed as a rare disease, which makes the diagnostic process longer and more complicated. On average, it takes ten years for a person to be diagnosed with EDS, from the first onset of symptoms. EDS UK ran an awareness campaign highlighting the length of time it takes to receive a diagnosis of EDS. You can watch the video here.

Can you have children?

I have no idea, mainly because I’m not in a position whereby I am trying to have children. However, the diagnosis of EDS in itself does not stop you from having children, but it can lead to a higher risk of complications for the mother and baby. I am very mixed about wanting to have children. In an ideal world, I would love to have children and I would love to be able to conceive naturally, but I am mindful of the fact that EDS if genetic, so there is a 50% chance that I could pass it on. I wouldn’t wish this condition on anyone and that includes any future children. EDS is an unpredictable beast: some days I am absolutely fine, with minimal restrictions, other days I can’t move from my bed and require care from another person for basic daily tasks. Having worked with children and young people who are young carers, that has to be something I will need to consider. Hopefully in time, I will be in a better position to properly decide what is best, because right now, I don’t have the answer.

When will you get better?

I won’t and I find it so difficult when people ask this question or say that they hope I get well soon, because I am not going to get better, in the conventional sense. I have periods of time when things are more manageable, and I lead a fairly normal life but the downside to that is the inevitable payback. And payback is a bit. In the five years since being diagnosed, my health has declined hugely, although that isn’t completely down to EDS, but also co-morbidities, such as gastroparesis and POTS. A future with EDS is sometimes quite scary to think about because I don’t know from one day to the next how functioning my body will be, but I have to remain hopeful that treatment options will improve with time and research.

Will you die from it?

This is probably the worst question that I have been asked, in relation to EDS and it’s such an important one to answer because of that. To make this question hit even harder, it was asked by a paramedic, whilst I was being rushed into hospital by ambulance. I reminded him that this job is to try and prevent me from dying. I know that he was asking out of curiosity because he hadn’t treated a patient with EDS before, but there’s a time and place. As I said above. there are 13 different types of EDS and vascular EDS can be life limiting due to the possibility of organ and vessel rupture. Life expectancy is not usually shortened with other forms of EDS. That said, conditions that are co-morbid with EDS can impact on life expectancy. If you have gastroparesis for instance and have intestinal failure as a result, the sad fact is that death from a lack of nutrition can and does happen. EDS can, in many cases, cause progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system. No one with EDS knowns what the future holds and emotionally, that is a big thing to deal with.

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How to Talk to Someone With Depression

Depression can really change how a person thinks and perceives information. It can cause friction between friends and family members and often lead to a person feeling even more isolated. Depression is a mental illness that can affect anyone. It is not something that you can simply snap out of or a sign of weakness.

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Mental Health Foundation

Below are some ideas around talking to someone with depression and questions that might be helpful.

Ask if they have had anything to eat or drink. If not, suggest having a glass of water and have something to eat if they can manage it. Talk about healthy and quick options, to avoid carb-loading which is likely to only give a quick burst of energy. Foods that are rich in protein are good. The thought of cooking for yourself when you are deep in depression can be too much to even consider, so offer support in buying healthy and nutritious ready meals that can be shoved in the freezer and cooked easily.

At the risk of sounding like someone from a crisis team, asking someone if they have had a bath or shower when they are feeling awful is sometimes an idea, providing the person is able to keep themselves safe in doing so. Self care is terminology which is thrown around by crisis teams very readily, but there’s no denying the fact that feeling clean is going to make you feel slightly better about yourself than being unclean. I get it, I really do, the energy and effort involved in having a bath or washing my hair means that it’s the last thing I want to do when I am depressed, but I try to remind myself that I deserve to be clean and I deserve to look after myself.

Again, at the risk of sounding like I am regurgitating snippets from the crisis team, encouraging someone to stretch their legs and move from their bed or the sofa is a way of showing that you care. I am not for one moment suggesting that you need to be walking miles in the picturesque countryside or be running a half marathon, but a quick walk around your immediate local area is enough to get those endorphins zipping around. Gentle exercise in the home is an option if you can’t face leaving the house, you can find lots of simple home exercise routines on Youtube, if you can’t face watching a highly positive and energetic fitness blogger and the NHS has home workout videos which are easy to access and follow.

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A big part of depression is shutting yourself away from people and not engaging with friends and family. This is definitely something that I do and I am fortunate to have a really support group of people around me, to check in with me and talk rubbish to distract me from the mess inside my head. Encouraging people to talk can be with friends or it could be with a medical professional. Ask if they have had any medical input and find out when the next planned contact will be. You can work out if you should be encouraging them to make contact with a professional sooner, or, if it can wait, suggest writing things down, to share next time there is contact. Don’t be afraid to offer physical contact, like hugs, but know that this doesn’t suit everyone. Whilst I love a good hug or cuddle, I know that for some people, this is their idea of hell, so knowing what works for the individual person is important. Pets are also a value source of companionship and support.

Ask if they have had any changes in medication and if they are taking their medication are prescribed. New medication can really mess with your head, especially in the early days when withdrawal is a risk and side effects of new drugs are more prevalent. Make sure that they are safe, as some medications increase suicidal thoughts and ideation and then wait it out with them. If things don’t improve after a few weeks, suggest contacting their GP.

If you don’t know what to say, just say that: tell your friend that you are there for them. As a humans, we want to immediately have the answers and be able to solve every single problem that we are faced with but sometimes, that isn’t possible. Let them know that you’ll be there, don’t accuse, threaten, blame, or make light or joke about how they might be feeling. Reminding a person that you care is one of the most important things that you can do. Knowing that you’ve got someone holding you up and fighting the beast alongside you is less isolating and is a reminder that you matter.

It’s worth remembering that what works for one person might not work for another. Asking how you can help and if there is anything in particular that would be useful is another way of showing that you care. Not everyone is open to the offer of help, not everyone knows what help they need and what you think is helpful and what they think is helpful could be two very different things.

Even if you can’t relate to a person’s problems or they seem insignificant, don’t belittle how they are feeling. Try to resist solutions that might seem simple to you. Most importantly, don’t make judgements on how they are feeling. Everyone’s feelings are valid and we all react in differing ways to situations. That doesn’t make us wrong, weak or defective, it makes us human.

2018 Favourites

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Well, we’ve made it to the end of 2018: a year which has caused the British population to overdose on Brexit, we had the Beast from the East and the hottest summer in forever. Baby Shark made us want to spoon our eyeballs out and the I’m A Celeb Class of 2018 gave us the ultimate body confidence song, I Like My Bum.

I’ve really enjoyed writing about my monthly favourites, throughout the year, so it only seemed right to reflect on the whole of 2018 and the things that I’ve loved.

Books

My stand-out book of the year has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. Since first reading this book in May, I have gone on to re-read it numerous times, each time picking up different aspects of the plot that I hadn’t noticed when reading before. I’m really pleased that Khan is releasing his second book in early 2019.

Another book which I have to mention is We Are Young, the latest book by YA author, Cat Clarke. Having only discovered Cat Clarke this year, I very quickly made my way through all of her books and it is a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue. What I loved most was that Cat writes about mental health in such a sensitive yet balanced manner. She doesn’t sugar-coat how difficult being a teenager can be and We Are Young also touches on the government cuts to mental health services and youth services and how this impacts on the most vulnerable in society. I can’t wait until Cat’s next book is out. No pressure Cat!

A book that hasn’t featured in any of my previous monthly favourites posts is Vox by Christina Dalcher. This book was extraordinary, so much so that I read it in one sitting. It’s very unlike any books that I normally read, but I was drawn to it because of the linguistic and neurolinguistic element in it. In dystopian USA, women and girls are limited to speaking only one hundred words a day. This is measured by a word counter which is fitted to their wrists, speaking over one hundred words means that the bracelet emits an electric shock, which then intensifies. Think 1984, with a neurolinguistic twist, I really loved it.

Films/TV

Like most of the British population, I was obsessed with Love Island and still feel that there is a hole in my life, come 9pm, as it’s not on TV to watch. Despite this, however, I will fully admit that Love Island is not a healthy representation on society and it highlights many issues, with how women are viewed and treated. I wrote a blog post about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island was a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Obviously I can’t write about my yearly favourites without mentioning Strictly Come Dancing. As always, I have loved loved loved this series, especially with the added controversy and drama. Stacey and Kevin were well deserved winners, having had the SCD journey, with Stacey going from complete novice to a talented dancer.

My stand-out TV programme of the year has to the The Bodyguard. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

As for films, the ones I’ve loved the most are Ladybird, Mamma Mia: Here We Go Again and Wonder. 2019 is looking good in terms of film releases and I’m especially looking forward to Toy Story 4 and Lion King.

Spoonie Favourites

The Body Shop has to have a mention here, as their skin care has (mostly) kept my skin in reasonable condition, when I haven’t felt eel enough to properly look after it. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup or having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. Products which deserve a mention are: Tea Tree Anti-Imperfection Night Mask is specifically formulated to care for blemishes and imperfections whilst you sleep and the hydrating face mists which saved my skin from heat induced sweats over the summer.

Another spoonie favourite from this is Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up, or when I’m bloated. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I’ve lived in Tesco jeans, since discovering them earlier in the year and I’m so impressed by the longevity of them. They’ve faded slightly but for the most part, they still look as good as when I first bought them.

This year, I invested in a memory foam pillow. Where has this been all of my life? Thanks to EDS, I have endless issues with my back, neck and ribs and need a pillow which offers support and it fairly firm, to support my wonky bits. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. It smells so much better than bio-oil, is less greasy and is absorbed more quickly. It hasn’t got rid of my stretch marks (that would be asking for a miracle) but they have improved: they aren’t as red or deep.

 

Odds and Sods

My first Odds and Sods yearly favourite overlaps with Spoonie Favourites. Last year, I stumbled across Spoonie_Village on Instagram. Run by the lovely Hayley, there is also an etsy shop, where you can buy all sorts of spoonie related items such as postcards, stickers, notebooks and calendars. I honestly can’t praise Hayley enough, her illustrations have made me smile during some really dark times this year and I can’t wait to see what 2019 brings.

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Over the summer, I was well enough to travel up to York, where I spent the best three years at uni, to catch up with old friends an lecturers. York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I’m able to look back on my week in York and remind myself that 2018 hasn’t been all bad, and I’m very lucky to have such supportive friends, dragging me through the tough bits.

My final favourite is the general blogging community over on Facebook and Instgram. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen, especially Amy, Pippa and Jenna.

 

 

 

 

October Favourites

Ah it’s now officially autumn, my favourite season! This month has been pretty busy, by my spoonie standards, but I’ve still found plenty of time to curl up on the sofa, with my duvet and the fire burning, being a proper little hermit.

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Keep reading to find out what I’ve been loving this month.

Books

Only one book recommendation this month, as I’ve been slacking a bit with reading. I also haven’t had as much spare income, so I’m having a bit of a break from buying books. Sob. I went back to my childhood by reading My Mum, Tracy Beaker by the one and only Jacqueline Wilson.  As a child, I loved Jacqueline Wilson books, although unfortunately, as an adult, I loved this book a little less. I enjoyed the idea of Tracy Beaker returning, with a child, but Tracy is yet to grow up and behave like you would expect an adult to behave. I can’t comment on other books by Wilson as it’s been so long since I have read them, but it took a long time to fully get into the plot. That said, there are strong messages around happiness, money and family values and I love that the book explores relationships outside of the traditional hetro-sexual ones normally seen in children’s books.

Film/TV

The arrival of autumn means that all the good TV series are back and this year has not disappointed. Strictly Come Dancing continues to sparkle on Saturday evenings, with the added controversy of Seann and Katya and That Kiss.

Outside of the world of glitter and sequins, October saw the start of series 14 of The Apprentice. I’ve only been a hardcore fan of The Apprentice for the past few years and always worry that the series will burn out and become repetitive but thus far, this series seems to be pretty strong, with the usual mix of good business ideas and crazy levels of arrogance.

The BBC is excelling itself in new dramas at the moment, including Killing Eve and The Informer. Killing Eve has been a real wow of a series, with a strong female cast, seeing Jodie Comer take on the role of a sociopathic serial assassin, being hunted and investigated by Sandra Oh. In a series full of twists, these two fierce women, both equally obsessed with each other, go head to head in an epic game of cat and mouse, toppling the typical spy-action thriller, which we are used to seeing on our screens.

Spoonie Favourites

Over the past few months, I have been struggling more and more with pain. I am reluctant to increase any of my opiate medication anymore than I already have done, which has led to me exploring other pain relief options. So, today I had my second acupuncture session, to see if this can help with some of the pain and/or symptoms of gastroparesis. I’m yet to feel any benefits from it and if I’m honest, the sessions have left me feeling a little odd, thanks to a combination of losing sensation in my hands and feeling very spaced out, which I’m told is normal and should lessen as the sessions continue. But I am finding the overall experience relaxing which I guess is half the idea.

It’s no secret that I love pyjamas, I probably have more pyjamas than I do real clothes and I am totally okay with that. One of the best things about the change in season is new pyjamas and I am loving the pyjamas in White Stuff. They are so soft and cosy the the Midnight Bloom bottoms are my new favourite pyjamas.

Odds and Sods

At the very beginning of the month, I stayed with a close friend, who lives in London and went to the theatre to see Everybody’s Talking About Jamie, It was outstanding and possibly one of the best shows I’ve ever seen on stage. Based on the BBC3 documentary, Everybody’s Talking About Jamie follows teenagers Jamie New achieve his dream of becoming a drag queen and going to his school prom dressed as a drag queen. With themes such as prejudice, bullying, family relationships, race and culture, this musical could not be any more relevant for a 21st century audience. It is funny, raw, a little bit fabulous and very sassy. I walked out at the end wanting to see it all over again.

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Universal Credit Saga – Part Seven

It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.

That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.

I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.

If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.

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I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.

 

This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.

The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.

Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.

All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.

 

 

Gastroparesis Awareness Month – Sarah’s Story

Gastro what? That was my initial reaction to my doctor’s suggestion that a condition called gastroparesis may be causing my symptoms of nausea, reflux, stomach pain, bloating and vomiting. I had also lost a significant amount of weight taking me from a healthy BMI down to a BMI in the 13’s at my worst. Having been back and forth to the GP and gastroenterologist for over a year and a half I was desperate for an answer. Naively I thought an answer would mean a cure. That evening I took my prescription of domperidone home and opened up the NHS website, carefully typing in gastroparesis. As I read through the symptoms I ticked each one off, I didn’t know whether to celebrate or commiserate, here was my answer after all this time. But there is no cure.

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Now, I’m no stranger to chronic illness, having already been diagnosed with M.E/CFS, endometriosis, IBS and POTS. But my gastroparesis diagnosis was the hardest to accept as it is such a change to everyday life. Gastroparesis translates to stomach paralysis, meaning the stomach does not contract properly to move food through into the small bowel: it is thought to be caused by damage to the vagus nerve, however gastroparesis is still a little understood condition. For some patients they are able to eat small, frequent amounts of easily digestible foods and manage their symptoms with no medication just dietary changes. For some patients they take medications called prokinetic medications which help encourage the stomach to contract and empty, so they are able to eat more normally again, many patients also take antiemetic medications to stop them feeling or being sick. Some patients manage on a purée diet, others a full liquid diet. For the more severely affected patients their nutrition will be artificial in the form of either oral nutrition supplements (ONS), tube feeds (enteral nutrition) or sterile liquid nutrition IV (parenteral nutrition).

On the 6th  of March 2017 I finally had my gastric emptying study, I sat up in nuclear medicine eating my radioactive cottage pie, Sainsbury’s Basic, and stood in front of a scanner at regular intervals to see how much of the radioactive mash potato in my stomach. I felt like the test went on forever. For a few weeks before I hadn’t been allowed certain medications and on the morning of the study I wasn’t allowed anything to eat or drink, including my usual medication for my nausea. Consequently I spent the hours of the study feeling increasingly ill and was relieved when I was finally allowed to go, I didn’t even get my foot out of the door before taking my antiemetic tablet!

Just three days later, the 9th of March 2017, I was diagnosed with gastroparesis. I had been admitted to hospital to begin tube feedings after over a year of supplement drinks and ever decreasing weight and blood results. I initially started with a nasogastric (NG) tube, which slowly dripped a liquid feed into my stomach for 20 hours a day. After a few months it was apparent that the NG was not the right option for me, I wasn’t tolerating my feed and was therefore losing yet more weight. Next up was the nasojejunal (NJ) which was placed into the jejunum which is the second portion of the small intestine. My first one was placed as an outpatient procedure which unfortunately went a little off plan, somehow some bacteria got in with the tube and I ended up with a particularly nasty gastrointestinal infection which resulted in one home visit from an out of hours GP, two ambulances to A&E and another 10 day hospital admission. I left hospital half a stone lighter with an NG tube and a plan to retry the NJ tube in a few weeks as an inpatient for the sake of safety. Luckily the second time round everything went smoothly and after a number of weeks and a feed change I was finally feeling a little better! A few days short of a year after my first NG was placed my feeding tube was changed from the temporary NJ tube to a more permanent PEGJ (Percutaneous Endoscopic Gastrostomy with Jejunal extension), a feeding tube placed through the skin of your abdomen, through your abdominal wall and  into your stomach with another thinner tube inside which travels down into the jejunum. This allows access to the jejunum for feeds and the stomach for venting gas and draining bile, acid and built up stomach contents.

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At the time of starting tube feeding I was terrified, at the age of 25 I had spoken to my Mum about what I wanted my funeral to be like. I had lost my job from simply being too poorly to get out of bed and go to work most days, often having six weeks at a time off. But honestly, I’m so glad I consented to the tube feeds. Between the feeds and the right combination of medication I’ve got my life back. I once again have the energy to have days out (albeit in my wheelchair due to my other conditions), spend time with family and friends and have even met the most wonderful man who loves me despite my illnesses, wheelchair and feeding tubes both NJ and PEGJ. I’m also a hell of a lot stronger, I’ve met some lovely people I now consider good friends and appreciate life so much more. At the time of receiving my gastroparesis diagnosis I thought my life was ending. But really it was just starting again.

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