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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July Favourites

Welcome to another monthly favourites post, looking at all the things I’ve been loving in July! The hot weather continues, my cat has given up tormenting the wildlife (mostly) and I have gassed myself out using Deep Freeze spray a few too many times. My health has been a bit up and down this month: I am so thankful that I was well enough to spend just under a week in York, reliving my university days and pretending, badly, that I am still a student. However, there has also been some real low moments, involving a lot of vomit, infections, catheters and paramedics, meaning that I’ve lost quite a bit of this month to sleep and being a bit out of it on medication. Something exciting that has happened this month is that I have been nominated for a WEGO Health Award, under the best in show blogging category. This has shocked me so much and it would mean the world to me if you would endorse me (vote) by clicking HERE!

So, onto the favourites!

Books

Last month, Dear Chronic Illness, compiled by Pippa Stacey of Life of Pippa was released. This book features a collection of letters, written by people who have been diagnosed or affected by chronic illnesses, in their varying forms. I laughed and cried, sometimes at the same time, reading this. Often it can be really hard to explain what life is like living with a chronic condition and there are times when it feels like it has taken over your life: Dear Chronic Illness gives an insight into what life can be like and makes you feel less alone.

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I have possibly talked about Holly Bourne in previous monthly favourites posts; her first adult fiction book, How Do You Like Me Now? was recently released. I’ll be honest, I was a bit indifferent at the thought of reading this book, for the most part I have loved Holly’s young adult fiction, but felt that her last YA book, It Only Happens In The Movies was slightly rushed, and didn’t compare so well to the Spinster Trilogy. I had concerns that How Do You Like Me Now? would follow the same path and be rushed and forced. It has been dubbed the new Bridget Jones, for this generation and whilst it’s good, I wouldn’t go as far as that. In my opinion, nothing beats Bridget’s big knickers, vodka and Chaka Khan.

Films/TV

Much like last month, I am still obsessed over Love Island. With only a week and a bit left, I’m not sure how I’m going to cope in life without it. In case you missed it, I wrote a blog post recently 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 is a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Over July we were flooded with all the talk about football and whether England will produce a less shameful performance this time round. I’m not a fan of football, put simply, I don’t understand the appeal of watching grown men chase a ball and roll around on the floor a bit and receive thousands of pounds for doing so. Not being funny, but a dog can do that and it would be a lot cuter and more entertaining, so why aren’t we watching that on television? Anyway, personal feelings aside, I ended up watching two of the England matches, one very much not out of choice (cheers, Nikki…) and then I watched the semi final, because, you know, if could have happened. I’m not going to say that I’m a convert, but the matches passed some time and England getting to the semi finals was a nice change from our usual, shameful displays.

Thanks to being unwell, I have rekindled my love of Netflix and have been watching Good Girls. The series follows three suburban mothers, who suddenly find themselves in desperate circumstances and decide to stop playing it safe and risk everything to take their power back, buy committing armed robbery. As American comedies go, I have been impressed by this, it has just the right level of wit, balanced with drama and the actors are pretty good too.

To pass the poorly days away, I ended up purchasing the full box set of Nurse Jackie and made my way through series one within one day. I have no regrets. If you like Scrubs, Grey’s Anatomy or The Night Shift then this is for you. With a few more illicit drugs.

Spoonie Favourites

At the beginning of the month, I had an appointment with Dr Hakim, a consultant in Rheumatology, who has a specialism in Ehlers-Danlos Syndrome. The appointment itself was helpful and I’ll probably talk about it in another blog post, but one thing he recommended was Nuun Tablets, to help with remaining hydrated and to potentially help with steadying my slightly wacky pulse. They are packed with electrolytes, as well as being low in calories and sugar and they have been brilliant at helping to prevent dehydration in this hot weather. Plus, if you purchase through the hyperlink that I’ve included, you get a sample of NipEAZE, which protects your nipples from abrasion while running, working, surfing or body boarding. Don’t say that I don’t spoil you with information and treats…what more could you want in life? 

Odds and Sods 

So, as I said at the beginning of this post, I went to York for a few days to catch up with university friends and some of my lecturers who I’m still in touch with. York is possibly one of my favourite places to visit and not just because of the memories it holds.

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Evil Eye Lounge, Stonegate, York

York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I can’t write a monthly favourites post without mentioning Give The Dog A Bone. People who know me from my uni days will know who much I love this shop and how much money I spent in there on a weekly basis. I can’t really do the shop justice in a blog post: if you like stationary, cards, homeware and rude humour then have a look at their website. It’s free delivery on orders over £40, you know you want to.

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

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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The Problem With Love Island

I love Love Island. I love the drama, the stupid comments, the recouplings, the challenges full of innuendos. I love almost everything about it. But this has got me thinking. As someone who identifies as being a feminist, does watching Love Island make me any less of a feminist or a bad feminist?

As with all reality television programmes, there has been criticism and controversy over Love Island and we are only four weeks in. Perhaps the biggest or most talked about controversy this year has been the behaviour of Adam, which has sparked warnings from domestic abuse and women’s charities about abusive behaviour and the signs of emotional abuse. Women’s Aid wants viewers to recognise unhealthy behaviour in relationships and to “speak out” against “domestic abuse”.

For people who don’t follow Love Island as avidly as I do, I’ll briefly explain: Adam entered the villa after the main coupling up show at the beginning of the series. He was initially coupled up with Kendall, but dumped Kendall for Rosie, who he then dumped for Zara. Both Kendall and Rosie have now been dumped from the villa due to Adam ditching them at recoupling. Adam also had a brief dalliance with Megan. So, in the space of roughly two and a half weeks, Adam has made his way through four women. Rosie literally slayed Adam over his behaviour towards her, stating that he didn’t like being ignored or like how he was behaving towards her. Adam responded by telling Rosie that she was childish and that he didn’t need to reassure her. It’s hard to portray why his behaviour was wrong, in words, but he actively laughed in her face when she talked about her insecurities and has manipulated situations after betraying the trust of various women in the villa.

But is Adam’s behaviour really a sign of emotional abuse or is he just behaving like a lad? Some people have spoken out, saying exactly that: that he is a lad in a villa/reality show with loads of girls in bikinis and can do what he wants and who he wants. Other people have called Rosie out, saying that she is an embarrassment to women and needs to grow a backbone.

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The simple fact is though, that if you are in a relationship and your partner starts to question your memory of events, trivialising your thoughts or feelings, or turns things around to blame you, it can be part of pattern of gaslighting and emotional abuse.

The level of control that Adam has over women in the villa is concerning and if he was to behave this way outside of an artificially maintained environment, then my personal view is that he needs to take a look at himself and his attitude towards women. Whilst Love Island is, ultimately, a game show, messing with people’s feelings in such an extreme way is not okay and gives a worrying message to viewers. It isn’t okay to gaslight someone, it isn’t okay to manipulate someone’s thoughts or feelings and it isn’t okay to belittle someone’s thoughts of feelings.

But my criticism of Love Island doesn’t end at Adam’s behaviour towards women in the villa. Something that was apparent even before the series started, when the line up was released was the lack of body diversity amongst the contestants. The men are all ripped and full of muscular six packs, clearly having spent hours and hours down the gym. The exception to this has been Alex, who works as an A&E doctor, and therefore doesn’t have the time to spend hours in the gym every day. Don’t get me wrong, he is still muscular but not to the same extent as the other men in the villa and he didn’t enter already sporting a glowing tan. Maybe this is why his coupling up process has been slower compared to other men in the villa or maybe it’s because he can withstand a conversation about Brexit, without worrying that we will lose all the trees and he doesn’t need to ask what an ear lobe is.

The lack of body diversity is apparent in the women as well. They entered the villa bronzed and toned, with no love handles when wearing bikinis and no obvious body “flaws”. If we are going to talk about stereotypical perfection, those women come pretty close. As someone who has struggled with body dismophia for years and years, watching Love Island can make me feel pretty crap about myself. I’m not tall with long legs, I don’t feel comfortable strutting around in minimal clothing and my body has more scars and flaws than I really want to think about and acknowledge. The women are all so very slim and have very few curves between them. In fact, the words of quippy contestant Niall, the girls look “like Instagram”, with criticism lamenting the distinct lack of body fat between them.

It would have been an perfect moment to show that love isn’t just about looks and that being beautiful doesn’t mean a body packed with muscles, being toned and having no space. However, now on series three and the casting remains an encouragement of a one-dimensional view on beauty and body types. Some people are slim. Some people are tall. Some people who have naturally flawless skin, but that isn’t a accurate representation of society and is teaching a poor message to more easily influenced younger viewers, who are being taught that beauty means tall, slim, legs up to their ears and hair down to their waist.

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The average woman in the UK in 2017 was a size 16 with a 34 inch waist and 36DD breasts. Whist the girls in the Love Island villa might have the latter of magazine perfect breasts, why is there not more representation when it comes to the former? Why, when the average body size is a 16, are the five women picked to enter the villa at the start of the series, all four dress sizes smaller than this and not representative of the average woman in the UK?

Don’t get me wrong, the women in Love Island are beautiful, each in their own ways. That I don’t dispute, but so are the hundreds of thousands of other body types that aren’t being represented on the show.

 

 

If you want more information about the warning signs of emotional abuse, you can contact the National Domestic Violence Helpline or Women’s Aid. Man Kind is a service for men, experiencing domestic abuse.

June Favourites

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Photo from spoonievillage calendar

 

Welcome to another monthly favourites post, looking at all the things I’ve been loving in June! At the time of writing this, it is exactly six months until Christmas and I’m not sorry to admit that I am somewhat pining for cold weather, fluffy jumpers and evenings with the fire lit. Hot weather doesn’t agree too well with my body. Anyway, on with my favourites for this month…

Books

Last month, I talked about I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan and how much I loved it. It made me realise, however, how little I know about Islamic culture and a lot of what I did know, was based on new reports, which can give a very one-sided viewpoint. So, with that in mind, I decided to educate myself a little bit and find out more about Islamic culture, through the medium of books. After searching on Amazon, I came across Randa Abdel-Fattah, a litigation lawyer and human rights activist, living in Sydney. Her first book, Does My Head Look Big in This, follows the story of Amal, a sixteen year old living in Melbourne, who also happens to be a Muslim, struggling to honour the Islamic faith in a society that doesn’t understand it, following her decision to start wearing this hijab. The book is insightful, laugh out loud funny and at times, a bit of a tear jerker, and I’m not known for crying at books.

The second book by Abdel-Fattah that I read this month is The Lines We Cross. The book has a similar set up to Does My Head Look Big in This: it is set in an Australian secondary school and looks at how society perceives different cultures and religions, with anti-immigration rallies fighting against the raise of immigration into Australia. The flip side of this books looks at the story of an Afghani asylum seeker, who came to Australia on a boat, following besiegement of her home country and faces a negative reception from native Australians. Again, I would really recommend this book, despite it being a YA book, its themes are applicable to adults and teenagers alike.

A Quiet Kind of Thunder by Sara Barnard was another favourite this month. Steffi has been a selective mute for most of her life – she’s been silent for so long that she feels completely invisible. But Rhys, the new boy at school, sees her. He’s deaf, and her knowledge of basic sign language means that she’s assigned to look after him. Put simply, this book was beautiful and I loved the perspective from Rhys, looking at how deaf people feel and deal with the hearing world, as well as how Steffi manages her social anxiety and the assumptions made by people around her.

My final book favourite for this month is Because We Are Bad by Lily Bailey. Anyone who wants to know about OCD, and how to fight back, should read this book – it is an emotional, challenging read. Lily takes the reader deep into the heart of the illness but she is also a deft writer, and even the darkest moments are peppered with wit and wry observations. Having a diagnosis of OCD meant that, at times, this book was a little hard hitting but I appreciate Lily’s honesty and could really relate to aspects of the book.

Films/TV

 

Okay so I only have one favourite from film and TV this month which is…dun dun duuuunnnn…

LOVE ISLAND.

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I am obsessed with this series and the first thing that I do when I wake up in the morning is watch the previous night’s episode on catch up. My life simply would not be complete without the daily debriefs with friends. My standout moments so far are Hayley on Brexit (and trees) and Rosie’s sass towards Adam. I still haven’t got over Kendall being dumped from the villa and I don’t think I ever will.

Spoonie Favourites

 

The Body Shop has come up on top again this month, with their spoonie friendly makeup and cosmetic products. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup of 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. A complete life saver in hot weather has been their mandarin face mist, which hydrates skin and is makeup friendly. Great if you need a quick refresh without any effort.

Another life saver has been their aloe soothing moisture lotion, with SPF 15. If you’re anything like me, putting sun cream on your face will result in claggy and blocked pores and all the spots, so this is brilliant at protecting your skin without breaking out in twenty million spots. It’s designed for sensitive skin and is paraben and alcohol free.

Continuing on the theme of quick and easy makeup products, Soap and Glory Fake Awake has been a recent discovery and is brilliant at covering up my ever growing dark circles, with minimal effort and time.

 

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

 

Happy 70th Birthday, NHS

NHS_70_logoOn the 5th July 2018, the NHS will be turning seventy years old: that’s seventy years of providing lifesaving healthcare to a ever growing British population.

As someone with numerous chronic and long term illnesses, I am incredibly grateful for the NHS. I’m not sure where I would be without it – probably in spiralling debt. There are, undoubtedly, criticisms regarding the NHS, but this is not down to the 1.3 million people who work for it, more down to the current state of politics, but this is not the time to talk politics and policies. So many of the people who work for the NHS go unnoticed and unthanked. They work tirelessly to keep the British population healthy. Regardless of health or wealth, we can be reassured that if we fall ill or have an accident, we will receive the treatment that we need.

NHS staff see the best and worst of people. They welcome babies in the world, sharing the joy with new parents and they administer end of life care, ensuring that people die with dignity and that the families are supported, during a time of grief, upheaval and turmoil. They are often dealing with people who are going through trauma and they do their best to relieve some of the pain and anxiety, felt by those needing medical care, as well as the people around them.

Needing medical care isn’t an alien experience for me. In fact, it’s the opposite, thanks to the fact that I am diagnosed with various long term medical conditions. But although I’m more familiar with the inside of my local A&E department and other departments in near-by hospitals, compared to most people my age, the familiarity doesn’t change the fact that it is still a frightening experience. But I can honestly say that I remember every single nurse who has looked after me on those occasions and ensured that I felt as safe and as calm as possible. This is not an easy task when you are overworked, underpaid and often unappreciated.

I can remember the nurse who held my hand during a particularly bad night, during one hospital admission. I was crying in pain, with pain relief not even beginning to lessen it and this one particular nurse sat with me until I was calm and we talked about my life, hopes and ambitions and things that I enjoyed. She told me that she had moved to England from Brazil because she was so desperate to work for the NHS.

I can remember the nurses and occasional therapists who went out of their way to ensure that I was at ease prior to me having surgery at the age of eight. They made me laugh and brought Guinea pigs into my room, as part of animal therapy. They also reassured me post-surgery when I was afraid and wanted my mum.

I can remember the health care assistant who apologised repeatedly when she had to cut me out of a Crew Clothing jumper, when I was on a spinal board, and then suggested that I wore cheaper clothes next time I ended up on a spinal board with a suspected fractured neck and bad concussion. Thankfully there hasn’t been a “next time” but the joking eased the fear.

It’s not just nurses who make the NHS as good as it is. There are so many people who do their job every single day and remain pretty much unnoticed. There are the porters walking miles every single day, making sure patients are where they need to be; from experience porters are some of the kindest and funniest people I’ve ever met. True NHS heroes.

I can’t write about the NHS without mentioning GPs, in particular, my own very wonderful GP. My GP has been my biggest supporter for over ten years. She has fought a near-constant battle for me to receive the correct treatment for my various conditions and has never once given up on me, even when I have very much given up on myself. When you are diagnosed with a rare condition, one of the biggest hurdles faced is the lack of understanding from medical professionals. Yet my GP knows my body as well as I do and has gone out of her way to research and find out more about my conditions, so that she is able to treat me in the best possible way.

So, I’d like to take this opportunity to take everyone who works for the NHS. Thank you for caring.

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This post has been written in conjunction with Scope and will be appearing on their website.