May Favourites – Lockdown Edition

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

 

Books

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

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

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

Films/TV

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

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

Spoonie Favourites

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

 

Lockdown Favourites

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

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

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

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

 

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

 

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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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.

Self Love in 2019

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Image from Hayley at Spoonie Village

I’ve made no secret about the fact that 2018 was a pretty rubbish year for me. I entered the year unwell and was diagnosed with gastroparesis and Addison’s Disease, as well as my body having the usual EDS related wobbles and issues. The idea of making resolutions at the start of the year is a bit of an alien concept to me, I’ve never really done it because I never saw the point. If I want to do something, I’ll do it and I won’t wait until a new year to make changes.

So why I decided to make resolutions at the start of 2018 I do not know. Realising that I had failed with two thirds of my resolutions made me feel miserable. Okay so I managed to read at least 52 books over the year but I didn’t buy my own house and I didn’t make progress with my new job because I had to turn said job down because I wasn’t well enough to work. Honestly, I feel like I’ve failed as a person, not just failed at resolutions.

I’ve learnt an important lesson here. You have absolutely no idea what is ahead of you in life. Things happen, both good and bad. Whilst I talk about the negatives about 2018, I need to remember that there were good parts and I learnt a lot thanks to the bad times. I made some incredible friends over the year, visited new places, won against the broken universal credit system and most importantly, I survived. And I read a lot of books.

As well as learning the important lesson of not being able to predict the future, I’ve also learnt that really, the only thing that I need to do is to be kinder to myself. I still have aims and ambitions, but they don’t matter as much as I thought they did. There’s literally zero point in beating myself up for things that are out of my control. No one asks to be unwell and we all face our own struggles in life.

My aims for 2019 are varied. First and foremost, I want to have a better understanding over the illnesses that I have. I’m still learning what I can and can’t do, so naturally I make mistakes. I want to be as physically fit and healthy as possible: I know that I experience fewer EDS symptoms when I exercise, so when possible I’d like to go swimming, go for walks and do strengthening exercises at home. I’m never going to run a marathon but by the end of the year, I’d like to be able to comfortably run 5km. Running isn’t something that comes naturally to me. In fact, I hate it. I would use any excuse under the sun to avoid cross country at school and I fail to understand why people run for fun. But I still want to be able to test and push my body; running 5km isn’t a challenge for some people but it will be for me.

I’d also like to write more over the coming year. I was incredibly lucky to have some amazing writing opportunities last year and I’d like to put together a mini portfolio of what I’ve written about and how I have written for. Writing opportunities are hard to find, especially when you’re freelance so I need to make a real effort in getting out there and finding them, instead of waiting for them to come to me.

As well as hopefully doing more freelance writing, I think that I’d like to write a book. People have been saying to me for a long time that I should use my experiences and write a book, but fear and impostor syndrome has put me off. By publicly saying that I think that this year is the time to actually start putting pen to paper (or fingers to keypad) I’ll be held accountable and can’t hide away from something that I would potentially be good at. If nothing else, I should probably try and utilise my linguistics degree.

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Finally, I would like to develop and stick to a more structured routine. I know that being out of a routine and having endless amounts of free time is really bad for my mental health, although I’ve coped miraculously well not working. Having something planned every day simply isn’t realistic for me at the moment, but I would like to try and implement leaving the house every other day, even if it’s just for a short walk and getting some fresh air. The nature of being unwell means that I need a lot of sleep however I want to be stricter with myself and try and sleep less during the day, unless it’s absolutely necessary, and use other rooms in the house more and keep my room for sleeping. The temptation of going up to my room to watch a film and then drifting off to sleep is strong and it’s a habit that I need to break.

If I stick to and achieve these goals then that’s great. If not, that’s okay. Life is an unpredictable bastard and I’m not going to be hung up over ambitions not being achieved when life is kicking me down!