April Favourites

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A slightly delayed monthly favourites blog post for April, if you’ve read my recent post about depression, you’ll know what’s been happening in my life and where I’ve been. Anyway, that aside, April has been and gone and it feels like 2019 is flying by, or is that just me?

Over to what I’ve loved in April.

Books

My standout book from April has got to be Internment by Samira Ahmed. I’ve been telling anyone who will listen to me to read this book. Set in a near future United States of America, seventeen year old Layla is forced into an internment camp for Muslim-Americans along with her parents. Layla begins a journey to fight for freedom, leading a revolution against the internment camp’s Director and his guards. This book is chilling and powerful in equal measures, mostly because the plot could become a very real prospect if social divisions escalate. The real terror of Internment is how close it is to the present-day United States, with the narrative making it clear how few additional nudges are needed. In addition, there is a deep-running theme about complicity and about how not standing up to something can be the same as letting it happen. This is not only how non-Muslim people either allowed or actively voted for the laws and internment camp seen in the novel, but also how people can turn on those who rebel.

Another bookish favourite from April is My Sister, The Serial Killer by Oyinkan Braithwaite. The title makes the book pretty self-explanatory. Korede’s dinner is interrupted one night by a distress call from her sister, Ayoola, she knows what’s expected of her: bleach, rubber gloves, nerves of steel and a strong stomach. This’ll be the third boyfriend Ayoola’s dispatched in “self-defence” and the third mess that her lethal little sibling has left Korede to clear away. She should probably go to the police for the good of the menfolk of Nigeria, but she loves her sister and, as they say, family always comes first. This book was addictive, leaving the reader with the question of who is more dangerous? A femme fatale murderess or the quiet, plain woman who cleans up her messes? I never knew what was going to happen and I love that in a book. Highly recommend, although the Nigerian language intertwined throughout the book got a little confusing at times.

Me Mam. Me Dad. Me. by Malcolm Duffy is a humorous and heartbreaking debut novel with the fresh, funny, honest voice of a 14-year-old Geordie lad recounting the trials and tribulations of family life and finding first love. The literacy ward nominations alone for this book speak volumes: Waterstone’s Children’s Prize 2019 Shortlisted, Sheffield Award 2019 Shortlisted and Carnegie Medal 2019 Nominated to name a few. Danny’s mam has a new boyfriend. Initially, all is good – Callum seems nice enough, and Danny can’t deny he’s got a cool set up; big house, fast car, massive TV, and Mam seems to really like him. However, cracks begin to show in Danny and his man’s new life and they cannot be easily repaired. As Danny’s life spirals out of control, Danny does the one thing that he can think of and find his dad. Malcolm Duffy has done an amazing job with his book which will appeal to so many readers on so many different levels.

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Films/TV

Having spent the majority of my time at home (in pyjamas) you would think that I have loads of film and TV recommendations. However, I am a creature of habit and will happily rewatch Happy Valley, Line of Duty and Silent Witness, to the point that I know the plots of by heart. That said, I finally finished watching Broadchurch, which I started watching last year but then never finished. Honestly, by the time I got half way through series three, I was a little bored but it still provided plenty twists and turns that I wasn’t able to predict.

I also sat down and finally watched The Hate U Give, based on the book by Angie Thomas, of the same name. I loved the book more than I can put into words, I very rarely cry at books or films, but both the book and film has me crying in sadness and anger at the unjustness of the situation being played out. Sixteen-year-old Starr lives in two worlds: the poor neighbourhood where she was born and raised and her posh high school in the suburbs. The uneasy balance between them is shattered when Starr is the only witness to the fatal shooting of her unarmed best friend, Khalil, by a police officer. Now what Starr says could destroy her community. It could also get her killed. Inspired by the Black Lives Matter movement, this is a powerful and gripping film about one girl’s struggle of justice and equality.

After a lot of deliberation, I watched The Disappearance of Madeleine McCann, after a number of people recommended it to me. I’m not sure how I feel after watching it, it certainly showed various things in a different light and it gave a balanced account of what happened. That said, it didn’t offer any new facts or insights. Unsurprisingly, The McCann family refused to take part in the series and asked those around them not to either, which leaves me feeling that the documentary itself wasn’t a necessity, more recapping of an awful situation that doesn’t have an end.

Spoonie Favourites

I’ve been really struggling with restless legs/arms/body and muscle spasms, due to some of the medication I’m currently taking. I was given a couple of suggestions of things to try, aside from the midnight baths and diazepam which I had been relying on (not an ideal combination…I don’t advise it!), including a weighted blanket and various prescribed medications. However the suggestion that came up the most was magnesium, specifically magnesium oil spray, which you spray on the soles of your feet. It hasn’t completely cured the spasms but it has made a difference.

What did you love over April, I love hearing your recommendations!

 

I Am Depressed

This isn’t going to be a particularly cheerful blog post, I will be talking about mental illness. If you’re feeling vulnerable, please read with caution.

I am depressed. By that, I don’t mean being a little bit sad, I mean full blown life altering depression, resulting in me being in hospital. People are using the term “breakdown” and to be fair, that’s quite an accurate description. I don’t feel ashamed about the fact that I am depressed.

Depression is ugly At times, it has felt like there’s been no way out. There aren’t any clear cut answers and it’s been more than a little bit chaotic. It is so much more than just being sad. It’s a feeling of endless hopelessness, combined with a fear that in unexplainable. It’s nothingness. It’s not knowing how to and not wanting to carry on.

Having said all of that, I consider myself as pretty lucky. When things started going wrong, my GP very quickly referred me back to mental health services, someone from the team rang me that same afternoon and the following Monday I had an assessment with the mental health team. I wasn’t expecting much, my previous experiences with the mental health team haven’t been positive, I’ve always been “functioning” meaning that despite any mental health battles, I’ve held down a job and coped (for the most part) without any intervention being needed.

This time, things were different. I was so depressed during the assessment, I could hardly speak. I couldn’t cry because I was too depressed to cry. Within ten minutes, a decision had been made that I needed to be referred to the day patient service at the local psychiatric hospital. I was shocked, scared but ultimately, numb, to this news because I honestly felt in a place whereby I was beyond help. I wanted to die. It’s a hard thing to admit, but I’m not going to shy away from it. By the end of the week, I had been assessed by the day service and then started the following week.

I’m now nearing the end of my two weeks as a day patient and will be transferring to a step-down service, run by the mental health team and Mind. Honestly? I am terrified. The walls of the hospital have been my safety and security. I’ve been under constant supervision and I’m scared about how I’m going to cope without that. But I’ll never know unless I try. I have got to try, for myself but also for the people who have had my back over the past few weeks and supported me when I have felt unsupportable. I’ll still have support from staff, albeit less intensively – I’m not expected to go out into the world alone just yet, thankfully. I could fall, I could fly, but I will not fail, whatever happens.

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There has been progress. Despite being physically unwell over the past few days (yay gastroparesis), mentally I’ve been okay. Last weekend I was counting the hours until I was back in hospital, I resorted to behaviours that I haven’t engaged in for years, and I mean years and the thought of getting to Monday morning and being back in hospital felt impossible. This weekend hasn’t been completely struggle-free but I’ve managed. I’ve used the advice and things that I had learnt in psycho-education sessions to keep myself safe.

Why am I writing all of this? Because I’m angry. I’m so bloody angry. I’ve struggled with mental illness for years and years, so maybe this was inevitable. But maybe not. The biggest trigger to this breakdown, or whatever you want to call it, has been my physical health. In the past 18 months, my life has changed drastically. I’ve gone from holding down a full-time job, saving to buy my own home and being a fairly independent adult to being on longterm sick leave, frequenting hospital more than I frequent pubs, with no real hope of moving out, being heavily reliant on my mum. Don’t get me wrong, I was still ill when I was working, but the diagnosis of gastroparesis and then Addison’s Disease has turned my life upside down. And I have had no support in dealing with that. There is a huge correlation between mental and physical health: you have a cold for a few days and mentally you feel like shit. Now imagine feeling shit, but more, every single day. With no escape.

Chronic illness, or any form, is life changing. But you don’t get the support in dealing with that. You’re expected to cope. Expected to just get on with it. That is not okay. I know of too many people from the chronic illness community who are now in hospital because of their physical health. I’m angry because I’ve been failed and I’m angry because so many other people are also being failed.

So yes, I’m feeling mentally stronger having been a day patient, but none of the underlying issues have been addressed. The trauma of my life changing so much in such a short space of time has not been addressed. No one has acknowledged the trauma of having to fight with medical professionals just to be believed. The medical traumas that I am unable to even begin to speak about are still being brushed aside.

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We have got to connect the dots between mental and physical health. One cannot exist without the other. I don’t know how to make the changes that need to happen. But I do know that this has got to be talked about more, to prevent more people from being failed.

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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January Favourites

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January is a funny month, it’s technically not any longer than any other month in the year but it seems to go on forever. I have months which are jammed packed with hospital appointments and this month has been one of those months. Aside from all the appointments, I’ve been hibernating under my duvet, making my way through all my pyjamas, because who wants to wear proper clothes in January?

Onto to things that I’ve been enjoying this month…

Books

All month, I’ve been excited about the release of Kick The Moon by Muhammad Khan. I pre-ordered this book towards the end of last year and it did not disappoint. I loved Khan’s first book I Am Thunder, so much so that it made its way into my 2018 favourites blog post. Kick The Moon is funny, powerful and relatable and is all about making and breaking friendships and cross cultural friendships and the stigma surrounding them. This book possibly wasn’t as stand out as I Am Thunder but still very much worth reading if you’re at all interested in British-Muslim cultures and the stereotypes surrounding it.

Another book which I’ve really enjoyed this month is Killer T by Rober Muchamore. This book follows two teenagers, whose lives are shaped by a society that’s shifting around them. One is a lonely Brit in his first term at a Las Vegas high school, the other is an unlikely friend, who gets accused of mixing a batch of explosives that blew up a football player. The two of them are drawn together at a time when gene editing technology is starting to explode. With a lab in the garage anyone can beat cancer, enhance their brain to pass exams, or tweak a few genes for that year-round tan and perfect beach body. However, in the wrong hands gene editing can become one of the most deadly weapons in history.  Killer T is a synthetic virus with a ninety per-cent mortality rate, and the terrorists who created it want a billion dollars before they’ll release a vaccine. This book was a real page turner. As a teenager, I loved Muchamore’s Cherub series and whilst this book is way more dystopian than the Cherub series, I still loved it.

That’s Not What Happened by Kody Keplinger has also made my hit list for this month. I ended up picking this book up in Belfast airport, whilst waiting for my delayed flight back home. There’s not much in Belfast airport so before starting to read it, I was ready to spoon by own eyeballs out with boredom. I was a bit sceptical about reading this book and wasn’t sure if it was going to sit comfortably with me. It’s based in a high school in the USA which has experienced a mass shooting and it explores the truth behind what actually happened and I wasn’t sure about how I felt reading a book which is so close to the reality of what has happened in a number of schools in the US. However, it was sensitively written and in no way glamourises the use of guns within the country. I would really recommend reading it.

As well as That’s Not What Happened, I also read Run by Kody Keplinger . Another story about the ferocity of friendship and the risks we’ll take to save our friends as well as ourselves. Run is an #OwnVoices novel with a legally-blind main character but also looks at sexuality. I loved that the main theme was on the strong bond between the two main female characters, and how their friendship comes to mean the world to each of them. Whilst there is a blind character and another character who is bisexual, this is normalised within the storyline by not heavily focusing on it.

 

Films and TV

People who know me well will know that Richard Hammond was my first love and that I will always love him a little bit too much. I refuse to watch the new Top Gear on the grounds that no one will ever be able to replicate the banter between James May, Richard Hammond and Jeremy Clarkson. The only reason that I ended up subscribing to Amazon Prime was so that I could watch The Grand Tour. I was a little disappointed by series one and two, however series three (so far) is much more like the old school Top Gear that I miss and love.

One of the best things about a new year means that it is the start of a new series of Silent Witness. Nothing beats curling up in bed watching people get murdered and then finding how how they got killed and who killed them. Something that has stood out in this series is how they are relating it to real life situations, such as the rise of attacks against trans people and drug country lines. I don’t think I’ll ever get bored of watching Silent Witness.

It kind of feels like I’ve been a little bit obsessed with Kody Keplinger this month. I ended up watching The DUFF, before realising that it was based upon the book by Keplinger, of the same name. Compared to other work by Keplinger, the storyline in The DUFF wasn’t as strong and was very much a chick-flick, with a boy saves girl thing going on. It was a good film, highlighting cyber bullying in schools and tries to celebrate individuality, but it didn’t require much concentration or effort to watch.

 

Odds and Sods

This month, I went to stay with a friend for a weekend. When there, we visited Virginia Water and it’s honestly one of the prettiest places that I’ve ever been to. It was very cold when we went, so we were both close to contracting mild hypothermia but the views were worth it. Plus, there were many cute dogs.

An exciting update from the Spoonie Village this month has been the launch of SpoonieVillage.com. Hayley, with the help of partner Tom, has created an online space for people with chronic illnesses, including a blog with regular updates, a forum and a one stop shop for all the spoonie essentials. I would really recommend checking it out and giving Hayley and Tom some love because they have worked so hard in created a safe space online for people.

 

 

 

Travelling With Chronic & Invisible Illnesses

Over New Year, I flew out to Northern Ireland to stay with a close friend and her family. It was the first time, travelling alone, since being diagnosed with gastroparesis and Addison’s Disease so there was a fair amount of anxiety on my behalf and a lot of anxiety on my mum’s behalf.

Travelling with chronic illnesses, or any long term conditions can be challenging and requires a great deal of organisation. Gone are the days of booking a flight and jumping on a plane for an adventure (I never did that anyway). So, here are my top tips to make travelling with a chronic illnesses a bit easier.

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  • Get medical proof. Because I was going to be travelling with anti-sickness injections and emergency steroid injections, I needed a letter from my GP to explain why I had needles and what the slightly suspicious white power was that I was carrying. Travelling out of England, security were very cautious with my medication and closely examined the various elements of it, which leads me onto my next point…
  • Leave extra time. But don’t do what I did and take the extra time to a whole new level and arrive at the airport two hours before bag drop even opens, because you honestly will lose the will to live. The extra time will allow for any additional cautiousness from airport security staff and will mean that you’re not rushing around, trying to find the right departure gate.
  • Pay for hold luggage. Whilst I don’t regret paying to check my luggage in, I really resent having to pay £50 for a 21kg bag. I didn’t have a choice in checking in my bag, I was travelling with 14+ bottles of nutritional supplement drinks and they would have taken up all of my hand luggage allowance. And that’s not even considering getting all that liquid through security. Price aside, I can’t stress enough how much easier it was, getting through the airport and being on the plane, not having to consider having luggage with me. Pulling luggage around can really hurt my joints, so I was able to reduce the risk of dislocations or additional pain.
  • Make sure you have “friendly food” with you. I use the term “friendly food” because some people, like me, have a restrictive diet and finding food in an airport that I’m able to eat can be challenging. Unless you’re able to eat chocolate and crisps or fast food, having your own food with you makes life much easier.
  • Carry more medication than is normal. My outgoing and return flights were both delayed and I don’t even want to consider trying to battle through traveling without sufficient pain meds.
  • Consider special assistance in the airport. Personally, special assistance isn’t something that I feel that I need at the moment and I hate the idea of relying on a member of staff in the airport to get me places. However, airports have a system whereby people with invisible illnesses or disabilities can get a lanyard with daisies on. This alerts airport staff that you might need assistance or help, without you having to go into a spoken essay about the reasons why.
  • Talk to cabin crew. Although I was on a very short flight, my body doesn’t respond very well to flying, which when combined with anxiety, means that flying isn’t an enjoyable experience for me. I had my first asthma attack on a plane and cabin crew knew what was happening and how to help, but going into an adrenal crisis is less common, so simply saying to the cabin crew that I have Addison’s, my medication is in my bag and what they should do, made me feel much calmer.
  • Book flights at sensible times. This might mean paying slightly more, to fly at a civilised time, but it’s kinder on my body and let’s be honest, no one wants to be leaving the house at 4.30am to transfer to the airport.

Let me know if you have any tips to make travelling easier.