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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Mental Health Awareness Week

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So as I said in my last post, my May favourites: lockdown edition, it has been well over a year since I last sat down and put pen to paper. The main reason for that is because 2019 was a really awful year. Towards the end of April 2019, I was admitted as a day patient at a psychiatric hospital, near to where I live. Things had got very bad, very quickly and I plummeted into crisis point without much warning. The care, compassion and support that I received from hospital staff was amazing. They genuinely saved my life and that isn’t something I say lightly.

After three weeks in hospital, I was transferred to a step down provision, which is jointly run by Mind and the NHS and I was there until July. It was, undoubtedly, one of the hardest things I have gone through. Having struggled for over ten years with my mental health, I never expected it to get to a point whereby I needed to be in hospital for my own safety. It was new and scary but made so much easier by the fact that I was treated with dignity throughout and made some wonderful friends. We laughed together, cried together, despaired together, rolled our eyes at other patients and ultimately, supported each other through a horrible time.

I was discharged in July and for a few weeks, it felt like I could take on the world but it quickly became apparent that I wasn’t yet ready for the world (and the world wasn’t ready for me) so at the end of August, I was readmitted and remained a day patient until the middle of December, when I was very suddenly discharged from all mental health services.

Having spent over six months in some form of day patient provision, to suddenly be faced with going it alone was a terrifying prospect. I soon worked out that it would be sink or swim and that I would have to work very very hard in order to stay out of hospital and to try and rebuild my life.

A year on since my first admission, I think I’m doing okay. Things are different, but good different. I have a job that I love, I’m working with the best people who make me cry with laughter and I am incredibly fortunate to be surrounded by endless support and understanding from my line manager and senior staff. Juggling a job, mental illnesses and chronic illnesses is hard at times, but I’ve never been made to feel inferior to other members of staff or like an inconvenience.

Obviously it hasn’t all been plain sailing. The past few weeks have been challenging, not because of covid or lockdown, more because it hit hard when it got to a year since being admitted. I’m the first to admit that I am hard on myself and there was quite a lot of beating myself up behind the scenes because I’m not where I expected to be or where I want to be in life. I was referred back to the mental health team, however the referral was refused. At the time, I was angry and felt let down, but a few weeks on and I think that the referral being refused was the best possible outcome. I don’t want to be under the mental health team and constantly be having to prove that I am sick enough to warrant their care: I want to get better and I want to get better for myself, not so services can put a tick next to my name and say that they’ve cured me. I don’t think I’ll ever be cured, I think I’m always going to struggle to some extent with mental illnesses, but I am learning to live my life along side them, instead of them dictating my life and my choices.

It’s a really cliched thing to say but my experiences last year changed me, but they changed me in a good way. It made me realise how passionate I am about mental health and the link between mental and physical illnesses. It taught me that sometimes, the only way out is through. Sometimes there isn’t a quick fix and you’ve just got to ride out the shit times and catch that bear.

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There’s so much I could say about it being mental health awareness week. But the simple fact is that we are aware. There is so much awareness, what there isn’t is adequate support for people who are struggling. We are told, time and time again, to reach out and ask for help, but so often that is ignored, or you’re made to wait an inexcusable amount of time, or you’re given the most basic input because it’s deemed to be the most cost effective. This country has a problem and that problem is that mental health is not seen as a priority. One in ten children and one in four adults will suffer from some form of mental health problem at some point and quite frankly, being kind is not enough to stop that. There needs to be more funding, better research into best treatment methods, more early intervention, less silencing through medication and more treating people are individuals. Until that happens, sadly, I can’t see much changing.

May Favourites – Lockdown Edition

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It’s been a long long time since I last sat down and wrote a blog post, more on why in another post. But as way of easing myself back in, I thought I’d kick off with a monthly favourites post, looking at all the things that I have loved so far in May. Obviously if you’re living in the UK at the moment, we are in lockdown because of COVID-19, so most of the favourites will be based around making life as painless and as interesting as possible, when you’re stuck looking at the same for walls for months on end!

 

Books

My absolute favourite book from this month has to be Q by Christina Dalcher. Long time readers of my blog might remember how much I obsessed over Vox, Dalcher’s first novel (I crowned it my book of the year) so I had high expectations for Q and it did not disappoint. It is powerful, gripping and a little bit shocking: in a world where being perfect is everything, what happens when you are faced with someone you love not making the grade? I think what hit me the most is how this book is actually inspired by historical events. While I knew that eugenics had been embraced by the Nazis, I was completely unaware of the American eugenics movement of the early twentieth century that predated this. This novel looks at eugenics in a 21st century society, leaving the reader wanting more and more. I already cannot wait for Dalcher’s next book. 

After reading Q, I’ve felt like I’m stuck in a bit of a rut when it comes to books, simply because I don’t think I’ll ever read anything as powerful or as good. That said, I really enjoyed Dear Edward by Ann Napolitano. I thought that this book was beautifully written. When a plane suddenly crashes, twelve-year-old Edward Adler is the sole survivor. In the aftermath of the crash, Edward struggles to make sense of his grief, sudden fame of being a sole survivor and find his place in a world without his family. But then Edward and his neighbour Shay make a startling discovery – hidden in his uncle’s garage are letters from the relatives of other passengers and they are all addressed him. Based on true events where a nine year old Dutch boy was a single surviving person of a plane crash, this book looks at what it means not just to survive, but to truly live.

I also really enjoyed Seven Lies by Elizabeth Kay. This dark and gripping story looks at the friendship of Jane and Marnie, inseparable since childhood and how their friendship slowly unravels over the course of seven lies, eventually leading to a death. My only criticism was that it ended too quickly. The book itself was very fast paced but the sudden nature of the ending made it seem like a slight anticlimax.

Films/TV

Having spent all of the past few months stuck in the house due to lockdown and needing to isolate because of health conditions, I have very much made use of my netflix subscription. One of the best series that I have seen in a long time is Unorthodox, based on the book of the same name, by Deborah Feldman. As a member of the strictly religious Satmar sect of Hasidic Judaism, Deborah Feldman grew up under a code of relentlessly enforced customs governing everything from what she could wear and to whom she could speak to what she was allowed to read. In Unorthodox, we follow the story of Esty, a young Jewish woman escaping a strict religious sect in Williamsburg, New York, and building a new life for herself in Berlin. I’m ashamed to say that my knowledge around Judaism is limited so I learnt quite a lot watching this series, although did have to concentrate due to the amount of Yiddish spoken. 

I’m a bit late to the party on my next favourite, but I finally watched After Life, written by and starring Ricky Gervais. I’ll be honest, when I started watching it, I was a little indifferent. I’m not a huge fan of Gervais so I was not in any way prepared for the six hour emotional onslaught that happened when I watched series one and two in one sitting. I have never cried so much at a TV programme. After Life follows Tony, whose life is turned upside down after his wife dies from breast cancer. He contemplates suicide, but instead decides to live long enough to punish the world for his wife’s death by saying and doing whatever he wants. Although he thinks of this as his “superpower”, his plan is undermined when everyone around him tries to make him a better person. If you haven’t watched After Life, stop what you are doing and watch it right now. You’ll laugh, you’ll cry and most of all, you’ll want to give your loved ones a massive hug.

Spoonie Favourites

Being stuck at home has meant that I haven’t been able to have my usual physio appointments and my body is starting to struggle. A friend recommended buying an acupressure mat, which is designed to relieve stress and pain. The cynical part of me isn’t sure if it’s making much difference as I’m still stressed and I’m definitely still in pain, but I will do anything to try and get my body to July when physio appointments will hopefully resume.

 

Lockdown Favourites

It’s seems only right to finish off by looking at some of the things that are making lockdown that little bit easier.

Firstly: jigsaws. I’d like to say that I am a pro at completing jigsaws, however this isn’t the case. I lose my mind after about 10 minutes, but it’s kept my brain busy, especially on wet days when I’ve been hibernating.

I also gave into temptation and ended by buying Sims 4. At the time of buying it was massively reduced (that’s my excuse anyway) and I’m managing to pass many hours building my dream house and then killing off my sims in as many dramatic ways as possible.

I’m not sure if I’d class it as a favourite but I bought myself a cheap pair of blue light blocking glasses for when I’m video calling people, as I seem to end up with a banging headache from increased screen time. Time will tell whether these make any difference, I suspect that I actually need my eyes testing and need new glasses, so my online purchase of blue light blocking glasses are only to bridge the gap until an eye test is possible!

 

I hope this gives you some inspiration of things to do or read with the world being a very strange place. Keep safe and remember to sing happy birthday when you wash your hands.

 

March Favourites

Here we are, another monthly favourites blog post. I was too unwell to write a monthly favourites post for February, and I’m not going to lie, I missed it a little bit. It’s such a good way of looking back over the month and picking out the good bits; chronic illness can be miserable and isolating so it’s nice to remember that life isn’t always like that!

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Books

My standout book from this month has got to be Paper Avalanches by Lisa Williamson. I’ve read Lisa’s previous two books and fell in love with The Art of Being Normal but was underwhelmed with All About Mia. Put simply, Paper Avalanches was a beautifully powerful book that I read in one sitting. Looking at parental mental illness, through the eyes of a teenage young carer, it gave a fresh look at the stigma surrounding hoarding and how dangerous it can be. Ro Snow is a character full of warmth and wisdom, way beyond her fourteen years of age and her frustrations towards Bonnie are quickly shared by the reader. I hope this book wins all the awards that it deserves.

Another book which I have loved this month is Looking at the Stars: How incurable illness taught one boy everything by Lewis Hine. Diagnosed with a life-threatening brain tumour and water on the brain at 17 months, he wasn’t expected to survive. But Lewis proved everyone wrong; he’s not only surviving but thriving. In one Facebook post on his sixteenth birthday Lewis invited everyone to see how he faces head on the challenges from his ongoing illness, and he went viral. Thirty million views later, Lewis now spearheads a campaign, Friend Finder, to make sure no one ever faces childhood illness alone. In his book, Lewis reflects on his brain surgeries and continual health problems, which are a daily challenge. He is at high risk of sudden unexpected death in epilepsy (SUDEP) and has a pump in his brain just to keep him alive and experienced horrendous bullying. Lewis shares how he finds the strength to overcome all this and still lead a fun and fulfilling life. 

My third and final literary favourite for this month is A Girl Called Shameless by Laura Steven which is part of the Izzy O’Neil series. In Laura’s first book in the series, we met Izzy, a loud and confident teenager who was subjected to revenge porn, something which is yet to be criminalised in the United States and the double standards surrounding the videos, in terms of gender stereotyping and feminism. In this second book, we catch up with Izzy, two months post sex scandal, The Bitches Bite Back movement is gathering momentum as a forum for teenage feminists, and when a girl at another school has a sex tape shared online, once again Izzy leads the charge against the slut-shamer. This time she wants to change the state law on revenge porn. If you’re interested in politics, feminism and gender debates, this is a book for you.

 

Film and TV

I haven’t watched much on television this month, combined with needing a lot of sleep and binge watching the box sets of Waterloo Road (judge me if you must), there hasn’t really been enough time. That said, I’ve been loving the Great Stand Up To Cancer Bake Off and have chuckled away and the celebrities’ awful baking skills, whilst being left wondering how they actually function in real life.

 

Spoonie Favourites

I’m fairly sure that I’ve taken about Nuun tablets before, but they’re so great, I’m going to mention them again. Designed to keep you hydrated wherever your active lifestyle takes you, Nuun tablets are packed with optimal electrolytes, containing clean ingredients. I was recommended Nuun tablets by a doctor in London to try and keep my hydration levels up and now use them daily. I’ve noticed a huge difference in terms of my concentration levels, which is saying something, considering I often have the worst brain fog possible.

Because of how unwell I was in February, being admitted to hospital was looking very likely. I (like many people) find hospital environments really stressful and I became aware that I wouldn’t manage with just my iPad to distract me due to battery life and charging etc. This lead to me to buying a portable DVD player which has been one of my best purchases ever and it has saved me during the long nights of insomnia when I haven’t wanted to turn my TV on and wake my mum.

Odds and Sods

I’m ending this blog post on a slightly different note. At the start of February, a friend lost her long battle with mental illnesses and sadly died. Megan devoted her life to helping others, even when she was struggling immensely herself. Her death has left a huge Megan-shaped hole in the mental health community and people are still trying to come to terms with her sudden death. In 2012, Megan founded the Recovery Shoe Box Project, Recovery Shoeboxes are mental health toolkits containing items that help you cope when times are hardest and coping feels difficult. Each box will include items that might distract, pamper, soothe and motivate and they are personalised to the individual receiving them. Since Megan’s death, £8,785 has been raised in order to keep her project on-going as a legacy to her. The aim is to reach £10,000 and after that who knows. If you’re able to donate, it would be much appreciated.

 

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Simon Godsave and Recovery Shoe Box Project

 

 

 

 

 

 

Universal Credit Saga – A Year On

So it’s been one whole year since I was signed off work and started the sole destroying task of applying for Universal Credit. If you’re a long term reader, you might remember my Open Letter to Theresa May, I was really reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits and honestly, I felt a level of shame over applying. My usually proud front was shattered by admitting that I needed this financial help, but my health comes first. That was what I told myself.

And my God, was my front shattered. I had opened up about my health in a way that I never had before. I was begging strangers to take pity on me, in the hope that the application process might be made a little bit easier. Only, they didn’t take pity on me. Honestly, I felt a bit like a criminal. I was warned about sanctions if I couldn’t attend appointments if I was ill. Let’s remember at this point, that the whole reason that I was applying was because of how unwell I was and still am. I was asked when I was going to get better, because the government doesn’t seem to understand the concept of chronic or life long conditions.

I felt and still feel like a failure because I can’t work. I feel ashamed that I am ill, even though now, a year one, I am able to accept that life’s a bitch and doesn’t always go the way you want it to.

Anyway, after the initial stress of the first few months of the application, things calmed down a little. I had my work capability assessment and thankfully, the person leading the assessment had an ounce of common sense and agreed that I wasn’t fit to work. That was until. October, when my payments were stopped for no reason. I have real anxiety issues about going into the job centre because of the bad experiences that I’ve had there, but nonetheless, in I went to find out what had happened. 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 required 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 your money when you’re not receiving the money in the first place.

This leads me to now. I think maybe that I had become a little bit complacent when it came to Universal Credit: nothing has happened to offend me in a few months and I thought that things would remain that way. I went into the job centre to hand in my latest fit note and was told that my payments had been stopped and that I was being sanctioned.

 

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I cried. A lot. The past month has been awful, I’ve been really unwell (more than normal) and the last thing I needed was finding out that my financial security was at risk. The person I saw at the job centre wasn’t able to reinstate my payments and was only able to tell me that it looked like I’d missed a phone call. I rang the Performance Centre and was told that my payments had been stopped because I’d missed a review phone call. Yes, I had missed a phone call, but I had also notified them that I was in hospital at the time of the phone call and therefore unable to take the call, and please could it be rearranged.

I then had to wait a week for the actual review phone call. There was me thinking that it would be to ask me if there had been any changes to my health etc but no, they wanted to know if I was still single (as a pringle, for what it’s worth) and if I had any savings or investments. My favourite part was when they asked me if I was receiving a World War Two pension. Dude, I wasn’t even alive then…

Whilst none of this is especially dramatic, it really knocked me. There isn’t one single aspect of Universal Credit that is easy to understand or logical. It baffles me that they have such poor customer service skills, when they are dealing with some of the most vulnerable people in society. There have been so many occasions over the past year when the process of Universal Credit has made me more unwell than I was already. It really seems like the government will jump upon the smallest thing as a reason to stop payments.

Until that changes, people will still be failed. They will still be struggling to pay rent and afford food. They will still feel penalised for being unwell and genuinely unable to work and I’m ashamed to live in a country whereby the government think that is okay.

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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.

 

 

 

 

Knowing When To Take A Break

When I first started blogging, way back when, around 2011, my main focus was mental health and living with various mental health conditions. My blogging was very much anonymous; I was so scared about sharing with people who I knew in real life what I was going through out of fear that I would be judged or that they would think differently. University completely changed my perspective about mental health. I realised that it wasn’t a battle that I needed to fight alone and, more importantly, that other people also struggled with mental illnesses.

Talking about mental health is still something that I am passionate about. The mental health system in the UK is very broken and it is failing so many people. I can’t change that, but I can advocate for people and remind them that they aren’t alone. I’ve seen both sides of the mental health system: I’ve been a patient and I’ve also been the professional, supporting service users and fighting to get them the help that they need and deserve. The number of people being failed really worries me. It worries me personally, as I have been failed by the system and it worries me as an ex-professional who had to fight on behalf of vulnerable young adults, to simply access a referral into mental health services.

A lot has changed since 2011. I am (for the most part) open and honest about my mental health. But, saying that, my own mental health has been forced to take a bit of a back seat, especially over the last year, as my physically health deteriorated to the point that it took over my life. Things as I knew them suddenly became very different and it was something totally out of my control.

I have been having therapy for just over three years. For about two years of that time, I found it a really useful process and I was getting a lot out of the sessions and was learning new coping strategies that I could implement into my daily life. As my physical health worsened, this changed the way that I worked with my therapist. I would frequently turn up to sessions so exhausted that I couldn’t function, a large chunk of the session would be a debrief on the week’s hospital appointments, whether I’d stayed out of hospital, if anything drastic had changed. Without realising it, my therapy sessions (which I am paying privately for) have become a space for me to talk about my physical health, completely ignoring my mental health. My physical health is important, it impacts my life daily and at the moment, it is very unpredictable. But my mental health is also important and I have been neglecting that and the reasons why I am in therapy in the first place.

So, I guess you could say that I’m going round in circles. Therapy can’t cure my physical illnesses and I am doubtful that it can fully “cure” my mental illnesses. It can, however, give me the skills to cope, manage, survive and pick myself up again when things go wrong.

During one sleepless night (painsomnia is fun) I ended up thinking about what I am getting out of therapy. The answer was not much. Because I have been so focused on trying to stabilise my physical health and was fixated on trying to avoid hospital, I hadn’t realised that I had slowly and silently slipped backwards in terms of my mental health. I have been anxious, really anxious, probably 90% of the time. This has manifested in an increased number of anxiety attacks, nightmares, my heart feeling like it’s going to explode and so much sweat. Gross but factual. My safe haven of my bed has been where I have wanted to hide much of the time and it has taken a lot of effort to go against that instinct. I guess I can be thankful for the many hospital appointments that forced me out of my bed, my pyjamas and my house.

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For me, anxiety goes hand in hand with OCD rituals and again, without realising, they have also worsened and I am more dependent on them, in order to feel safe and less anxious.

Relapses happen. They are part of life and I know that being able to recognise this slippery slope is positive.

This week I made the decision to take a break from therapy. Not ideal, you might be thinking, given what I have said above, but I think and hope that this is also a positive step. I was honest with my therapist and said that I felt that the sessions were becoming too focused on EDS, gastroparesis, Addison’s and all the other fun things that my body does. I am not addressing the reasons that I am in therapy and that has been the case for too long. Those reasons aren’t ever going to diminish or become less problematic if I continue to ignore them, either consciously or subconsciously. I am a pro at changing the subject and I think my therapist needs to be stricter at forcing the difficult conversations because I can’t do it for myself. It won’t be a long break and it was agreed on the condition that I made contact with my therapist if I needed to.

I’ve been here before and I know the feeling of “stop the world, I want to get off” will pass. As anyone with a mental illness will confirm, sometimes you will have days when you feel on top of the world and able to take anything on. Other days aren’t quite so great and you end up feeling frustrated and demoralised about life. And moments when I feel like that are when I need to take a break and re-evaluate things, without piling hideous amounts of pressure on myself.

For much of 2018 I have felt like a massive failure. I haven’t achieved my goal of moving out and as the year has progressed, it has become more and more unlikely that I will be able to fly the nest any time soon. I am crazy jealous of people who are living independently. Rationally I know that I need to be at home, financially I can’t afford to move out and I also need too much help with regards to my health to live alone.  I’m not working and the whole universal credit process destroyed my soul a little bit, so much so that when I get an email or text from them, I want to be (and often am) sick. Classy. But I know that I can’t work, even the pleb who met me once for my fitness to work assessment agreed with that. I’m not well enough, but I am taking tiny steps forward to engage in the workplace again.

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I used to hate it when people told me to be kind to myself. My counsellor at university ended every session by saying “go well out there” and looking back, that was possibly the best thing anyone could have said to me. I’m not going to succeed in everything I do, life doesn’t work like that. All I can do is try my best and “go well.” And yes, I need to be kind to myself, particularly when the world doesn’t feel like it’s being very kind.

We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

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I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.

Effective Treatment Pathways For EDS

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One of the hardest things that I have found, since being diagnosed with Ehlers-Danlos Syndrome is that there isn’t a clear treatment pathway or anyone overseeing my care. I am speaking as someone living in the south of England, this could well be different in other parts of the world and treatment various depending on where in the UK you live. This means that I don’t have anyone officially overseeing my care and treatment and instead, my treatment is scattered across numerous hospitals and departments and places in the country. I live in Oxfordshire, but receive treatment in London, as well as Oxford and I am under many specialists including physiotherapy, cardiology, infectious diseases and fatigue clinic, gastroenterology (in Oxford and London), rheumatology, urology, genetics and orthopaedics.

Very often, patients with EDS who are over the age of 18 have little or no care within the NHS. Healthcare workers and providers have no access to formal training, resulting in patients needing to self fund private care with the few specialists available, in order to manage their multiple,painful & life threatening disabilities.

I am really fortunate in the respect of being able to afford private treatment, but that cannot be a forever option because I don’t have an endless supply of money. I have to self-fund my physiotherapy treatment and have been for over five years, because on the NHS, I am only entitled to six sessions before being discharged. EDS is a chronic and incurable illness, which will not and can not be made better with six sessions of generic physiotherapy. My physio is amazing and was the first person who picked up on the possibility of me having EDS; I would be lost without her, I need regular and intensive physiotherapy to keep my body moving and to try and reduce pain. Think of it as a car needing a service or MOT to make sure it’s working, only I need physio every two weeks, not once a year.

Likewise with gastroenterology, I have paid to see a private consultant in London because I was receiving such poor treatment in Oxfordshire. My local gastroenterology consultant hadn’t heard of EDS and mis-diagnosed me to that very reason, and it was only because my mum and I pushed for further tests that I was finally diagnosed with gastroparesis. Currently, this is being “managed” through medication and dietary changes, only I am not getting better and the risk is, the longer I am left like this, the harder it will be to access other recognised treatments for gastroparesis because I won’t be well enough.

More recently, I ended up in urinary retention, which was later discovered to be due to a kidney infection. I have suffered for years with kidney infections, the first one being when I was on a French exchange, where I ended up in hospital. Unfortunately, GCSE French doesn’t extent to explaining to a doctor this awful and unexplainable pain, but I could tell them that I lived with my mum and rabbit and that my favourite subject was English and that I did the hoovering at home.

There is a link between EDS and urinary retention, which I tried to explain when I was in hospital, whilst having three nurses peering at me down below, trying to shove a tube into the urethral opening. It really is as fun as it sounds. No-one was particularly bothered about the fact that it was likely that this was happening due to the fact that I have EDS: in simple terms, because I have EDS, I am extra stretchy, which includes organs etc. The bladder expands anyway when it is full, but it had over expanded meaning that it then couldn’t contract and empty. Again, really fun.

I found that having a catheter fitted incredibly traumatic and I was all for yanking it out myself, after consulting Dr Google and Dr YouTube, about self removal of catheters. The trauma aside, I was also very concerned about the risks of having a catheter, as an EDS patients. Because our bodily make-up is different, there is an increase risk that once a catheter is fitted, the bladder ceases to function normally, therefore becoming dependent on a catheter.

There is no continuity of care. I am lucky to have a GP who is on the ball and supportive, but being under over nine hospital departments can become confusing, especially when people have conflicting views and options and more so when professionals don’t know of or believe in EDS. Trust me, it’s a real thing. Each time you meet a new professional, you have to explain everything because there is so much which could be as a result of EDS. Having a designated health care professional overseeing care would make a huge difference to patients like me, but also friends who I have met who also have EDS and other chronic illnesses.

Why am I going on about this? Because, simply, it needs to change. No other disease in the history of modern medicine has been neglected in the way that Ehlers-Danlos Syndrome has been.

A government petition has been set up, to try and improve healthcare for patients with EDS and more importantly, to improve on education of EDS and its different types, so that medical professionals are more aware of it. It is thought that only 5% of EDS suffers are diagnosed, with only 31% of people diagnosed in under ten years from when they first became symptomatic.

This has got to change. Please take two minutes out of your day to sign the petition. It might not seem like much to you if you don’t have a diagnosis of EDS or know anyone with a diagnosis, but for EDS patients, this could be life changing.

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Universal Credit Saga – Part Six

I’m going to try and keep this short and sweet. Having been away for the past week, I got home yesterday to be greeted by numerous brown envelope letters. I’m not a great fan of these types of letters, they fill me with dread and give me all the anxiety so I decided to ignore them and open them when I’m less exhausted. So, this morning was the morning that I did some adult admin, including opening the dreaded letters because even looking at them was making me feel a bit ill.

One of the letters was from universal credit and gave the decision of my work capability assessment. I’m not joking when I say that I’m writing this with teary eyes: I have been granted universal credit. I have been deemed ill enough to not need to be job searching or attending interviews and I don’t need to attend work commitment meetings anymore. It honestly feels like a huge weight has been lifted and I have been fully validated over a situation which I should not need validation for.

Obviously this is not an Oscar acceptance speech but I wanted to say a massive thank you to everyone who has dealt with the crying, ranting, swearing, anxiety attacks and all the negativity associated with universal credit. The system is a bastard and has made the last few months of my life utter hell. But this fight isn’t over completely. Yes, I am truly thankful that I have won against the most broken system possible but that is not going to stop me speaking out at how unjust the system is and how it’s failing the many, not the few.

Discrimination against invisible illness has got to stop.

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