Addison’s Disease Awareness Month

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There seems to be an awareness month or day for everything these days, but I’m going to take advantage of that and the fact that April is Adrenal Insufficiency awareness month.

I was diagnosed with Addison’s Disease in August 2018, so I’m still fairly new to the disease and very much still learning about managing it.  Addison’s Disease is also known as primary adrenal insufficiency and is a rare disorder of the adrenal glands. The adrenal glands are two small glands that sit on top of the kidneys. They produce essential hormones: cortisol, aldosterone and adrenaline. In short, having Addison’s Disease is usually the result of a problem with the immune system, which causes it to attack the outer layer of the adrenal gland (the adrenal cortex), disrupting the production of the steroid hormones aldosterone and cortisol. This means that my body doesn’t produce any cortisol. In a normal person, extra cortisol is released when they are unwell, have a shock or injury, so I need to be really careful when this happens and I will need to take medication for the rest of my life to replace the missing cortisol.

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When my cortisol is low and prior to diagnosis, I felt very unwell. I had such low energy levels that I spent more of my time in bed sleeping. No amount of sleep helped and it was a whole new level of exhaustion that I can’t put into words. As well as the exhaustion, I was also very weak: my legs would give way because my muscles felt so weak and mentally, I felt incredibly fragile and cried a lot.

Despite Addison’s being a rare disease, I found the diagnostic process pretty straight forward. I had a blood test to check my cortisol levels: at 9am they should be over 400… mine were are 87. Following on from this, I was referred to endocrinology to have a synacthen stimulation test, which is where a synthetic hormone is injected to encourage the adrenal glands to produce cortisol.  Mine didn’t produce the cortisol, which led to the diagnosis of Addison’s Disease.

Adapting to life with Addison’s has been hard. I think out of all the conditions that I have, Addison’s has been the condition which has had the biggest learning curve. Whilst my other conditions can mean that I feel very unwell, I can’t die from them: I could die from having Addison’s if it isn’t managed correctly. On the same day of diagnosis, I went into adrenal failure and was rushed into hospital. When Addison’s Disease is left untreated (or prior to diagnosis), the levels of hormones produced by the adrenal gland gradually decrease in the body. This causes symptoms to get progressively worse and eventually leads to a life-threatening situation, called an Adrenal Crisis.

I’ll be honest, I remember very little from being in crisis. I was very confused and dizzy and drifting in and out of consciousness. I couldn’t stop being sick and the weakness that I was already experiencing worsened to the point that I couldn’t stand up. It was a steep learning curve in how quickly it needs to be treated, had it been left I could have faced slipping into a coma or death. Scary shit.

One of the hardest things that I have to deal with are the rules surround sickness. In a normal person with Addison’s, if they are sick more than twice, they need to inject hydrocortisone and call 999, to be admitted to hospital for treatment. Because I have gastroparesis, I am sick. A lot. I am also prone to cyclical vomiting, which can be dangerous with Addison’s. Managing the two conditions side by side is a challenge but I have learnt to distinguish between my gastroparesis sickness and other sickness. Despite that, I still need to be vigilant and have spent many hours in A&E at risk of slipping into a crisis because of vomiting, praying that the magical anti sickness drugs will work.

Having Addison’s is made easier by the fact that I have an amazing team looking after me: shout out of the staff on Bagot and Drake Ward at the Churchill Hospital in Oxford for looking after me (and my mum) and answering all my endless questions to ease my anxiety.  I don’t dread endocrine hospital appointments because the staff are so lovely and friendly. I think the fact that I had already been diagnosed with long term illnesses, prior to my diagnosis of Addison’s made it slightly easier to get my head around, but it was still a shock, especially when it was hammered home that if I don’t look after myself, I could die.

I’m open to any and all questions about Addison’s Disease. I might not have all the answers but I’ll do my best or will signpost to support/information.

 

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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Things I’ve Learnt: 2018 Edition

I’m not exaggerating when I say that 2018 has been really tough year. I went into the year high on the news that I have been offered my dream job and my main aim for the year was to buy my own house and live independently. The reality has been very different. By the end of January it was becoming clear that I was very unwell, meaning that I had to turn down my dream job because I simply was not well enough to even get out of bed, let alone work in social services. With my sudden unemployment, I was forced to take on the benefits system, which was utterly soul destroying. My dreams were shattered further when I realised that not only was I too unwell to move out, I also couldn’t afford it.

 

  1. I know my body better than anyone. The NHS is fantastic and I wouldn’t be alive without it, but the nature of living with rare conditions and being medically complex means that I need to advocate for myself and education medical professionals, because very often, they aren’t taught about the conditions I have.
  2. I have got to fight, even on the days when I’ve lost all hope. Don’t get me wrong, there have been days when all I’ve wanted to do is hide in bed and that is okay. But things won’t ever move forward if I don’t speak up and demand the treatment that I need.
  3. Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
  4. Not everyone will understand. The nature of invisible illness is that you can’t see it. A lot of the time, I look pretty healthy but that doesn’t mean I am well. People often say that I look well and therefore assume that I’m better or cured. Unfortunately, I’m never going to be cured and just because you can’t see what’s going on inside my body or the amount of pain I’m in, it doesn’t mean that I’m well. Over the years I’ve been given well-meaning, but quite frankly stupid advice about how to make myself better, ranging from eating quinoa, to drinking beer, to following a clean and plant based diet. It takes a lot of effort to not roll my eyes to these suggestions.
  5. My hopes and dreams will change. Unlike most healthy twenty-somethings, I don’t dream of traveling the world or getting a promotion or having an amazing holiday. My hopes are simple: to stay out of hospital and for my other sick friends to be as okay as possible.
  6. I can never have too many books. At the beginning of the year, I set myself the challenge of reading 52 books over 2018. This is one thing that I succeeded with and my book collection is slightly growing out of control.
  7. It’s okay not to be okay
  8. I’m allowed to be terrified. This year has thrown many new things at me, that I never expected. My new normal has taken a lot of adjusting to and I’m still not fully there. Having numerous illnesses that can’t be cured and are likely to worsen is scary.
  9. There will still be good days.
  10. I can’t face things alone. I need people to support me, whether they are family, friends or medical professionals. I can’t fight the shit stuff alone.
  11. I have got to pace myself.
  12. I’m allowed to miss being healthy and I’m allowed to be resentful.
  13. As much as I hate it, medication keeps me alive.
  14. Never underestimate the power of a pair of comfy pyjamas.
  15. My body will change and I won’t always be in control of that.
  16. Being as healthy as possible requires work.
  17. Medical professionals who get it are incredible and I need to appreciate them.
  18. I’m a lot stronger than I give myself credit for.

I’m hoping more than anything that 2019 is a little bit kinder to me and doesn’t throw any more illnesses at me.

Happy New Year to all, keep fighting and know that you’re not alone.

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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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.