I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.
Hyperbole and a Half – Allie Brosh
The Truth Pixie – Matt Haig
Living With the Enemy – Ray Owen
The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
Miranda’s Daily Dose of Such Fun – Miranda Hart
Five Feet Apart
Brain on Fire
We Are Visible
This Is Not What I Ordered
Chronic But Ironic
Feminists Don’t Wear Pink (Scarlett Curtis)
Shagged, Married, Annoyed (Rosie and Chris Ramsay)
Amy’s Life/Amy Lee Fisher
Life With Stripes
Health Care Esstentials
Dry shampoo (Batiste or Colab Dry Shampoo)
Body Shop Almond Milk Body Yogurt
Au Lait | Scottish Fine Soaps – Body Butter
Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
Amie Petal Perfect – Cleansing Micellar Water
Snug as a Bug
Hot water bottle
A good pillow (I have a V pillow and a memory foam pillow)
Odds and Sods
Large medication box
A support system (friends, family, health care professionals, people who just get it)
Technology to keep connected to the outside world
A bag – fashionable but sensible. Mine is similar to this
Mobility aids (crutches, wheelchair, cane, walkers etc)
NB – If you aren’t familiar with the Spoonie Theory, click here
Instead of talking about books that I have read over the past month, I want to highlight books by Black and Asian authors, in the wake of the BLM protests and George Floyd.
Queenie – Candice Carty-Williams
Such a Fun Age – Kiley Reid
Why I Am No Longer Talking to White People About Race – Reni Eddo-Lodge
It’s Not About the Burqa – Mariam Khan
Does My Head Look Big in This? – Randa Abdel-Fattah
I Am Thunder – Muhammad Khan
The Hate U Give – Angie Thomas
Clap When You Land – Elizabeth Acevedo
The Color Purple – Alice Walker
Noughts and Crosses – Malorie Blackman
The Girl Who Smiled Beads – Clementine Wamariya
I’ve been continuing to take advantage of lockdown by watching more things on Netflix. I loved Dead to Me, a comedy focusing on a widow who is searching for the person responsible for killing her husband in a hit and run. Unbeknown to her, the driver befriends her at a bereavement support group. In a weird way, it explores the funny sides of grief, loss and forgiveness and I can’t wait for series three.
Based on the book by Celeste Ng Little Fires Everywhere, is a recent adaptation for Amazon prime. I was slightly underwhelmed by the book, but I loved the series.
Glow Up has become a little bit of a guilty pleasure over recent weeks. It reminds me of when I was at university and my Tuesday evenings were made with another BBC Three creation, Hair, which followed hairstylists bringing to life crazy and unique hair designs, to be crowned the best hair dresser. Glow Up follows a similar theme but with makeup artists undertaking various tasks and elimination rounds. I didn’t want to like this, but I’ll hold my hands up, I love it!
I recently discovered B12 super energy patches. I decided to try these as my B12 levels aren’t great and I struggle with absorbing tablets due to my gastroparesis (and I take so many on the daily). It’s hard to tell whether or not they have made a difference, or if it’s just been a placebo effect, but I seem to have more energy and less fatigue so it’s a winner for me.
Odds and Sods
Okay so it’s not really a secret that I love the Body Shop, so whenever they realise a new range, I’m normally pretty happy with it. Their latest range of cooling cucumber and zesty lemon has not disappointed. The cucumber body yogurt is brilliant if you are a little bit sunburnt and the lemon is a lovely scent without being over powering.
I recently decided to have a moment of extravagance and purchased the most expensive skin care item that I have ever bought. Said item is Charlotte Tilbury’s Magic Eye Rescue. At £42 for a 15ml pot, it is a lot of money and whilst I really love it, I don’t know if I would buy it again because I cannot justify the price. My eyes seem slightly less puffy and the skin feels smoother but my black bags haven’t magically disappeared which was what I was hoping for!
My final favourite for this month is a bit of a weird one. As many of you will know, May is Ehlers-Danlos Syndrome awareness month and out of coincidence, Matalan have been selling a cute little zebra cushion. Zebras are the EDS mascot so it was meant to be! At the time of writing, it is out of stock, but they do have other zebra-ish stuff, so it’s worth a look.
I found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.
Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain.
That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational.
That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try.
So how did I survive lockdown without relapsing and becoming very unwell?
Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad.
On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere.
Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.
Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.
As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.
A few years ago, in 2016 to be exact, I wrote a blog post about 30 things I wanted to do before the age of 30. I am now two and a half years away from the big three-oh (OHMYGOD) so I decided to look back on those goals and do an update.
1) Complete a masters degree.
I have applied for a masters degree and if all goes to plan, I should have finished by the age of 31, so I’m counting that as in process.
2) Work in a role which supports young people with mental illnesses.
Done, since leaving university, all my jobs have been supporting young people with social and emotional needs in some capacity and it continues to be my plan for the future.
3) Travel the world.
This hasn’t been so successful. I have traveled in the past four years but nowhere near as much as I was hoping. As I became more unwell, my priorities changed and I realised that as much as I want to explore new places, I also like being near an English speaking hospital or somewhere with a good healthcare system. I’ve realised that owning my own house is also higher up on the list of priorities so when I’m able to save money, it goes towards that.
4) See the Northern Lights.
See above. Although I do plan on going to Iceland one day because I think it is a beautiful country. Maybe when Rona has stopped ruining everyone’s lives.
I am literally the most single person you could find. I am happily a cat lady and not sure how my cat would cope if I started sharing a bed with someone else. That said, I would like to marry and probably have children, just right now that’s not something I’m focusing on. If it happens, that’s great but equally, I’m not actively looking for Mr Right.
6) Have children (hopefully).
As above. I wrote a blog post recently, about frequently asked questioned that people with EDS get asked and I touched on the baby and child thing in that. In short, yes, I would like children, but I have to consider the risks to myself, but more importantly my child. EDS complicates things a bit. I’ve said more about the whole thing here.
7) Have my own house.
Twenty-three year old me was very naive about the cost of Adult Life. I’m in the process of saving and am considering selling a kidney to fund a deposit. Joking, joking. I like to torment myself by looking at Right Move and to admire all the houses that I can’t afford (aka so all the houses) but I really hope that by thirty, I will be in a better financial position to be able to afford my own little abode.
8) Be financially stable.
To be fair, I would say that I am fairly financially stable. I was on universal credit for two years and it really taught me about the importance of budgeting, although even before that, I was pretty good with money. I don’t take money for granted and I love the feeling of satisfaction when I’m able to buy something that I have saved a long time for. Right now, I’d much rather save money than spend it, however that doesn’t include buying books or anything from the Body Shop.
9) Sing on a West-End stage.
As if I’d ever really have the confidence!
10) Sky dive.
I plan on doing this, as soon as it is possible! As I’ve said in other posts, I spent over six months as a psychiatric day patient in 2019 and I really want to give back to the day hospital to say thank you. The building is old and the interiors are more than a little run down and I would love to be able to contribute to a more cosy atmosphere, making it feel even more like a safe place. Watch this space!
11) Bungee jump.
I think I was being a bit over-optimistic here. This would probably break me.
12) Complete a half marathon
Really, Laura?! I have no desire to do this.
13) Complete a triathlon.
I haven’t completely ruled this one out. I found out that there is a Superhero Triathlon which is specifically for people with disabilities and I think I’d to complete it.
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!
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.
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.
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.
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.
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.
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.
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.
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!
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!
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.
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.
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…
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.
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.
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!
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.
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.
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.
Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
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.
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.
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.
It’s okay not to be okay
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.
There will still be good days.
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.
I have got to pace myself.
I’m allowed to miss being healthy and I’m allowed to be resentful.
As much as I hate it, medication keeps me alive.
Never underestimate the power of a pair of comfy pyjamas.
My body will change and I won’t always be in control of that.
Being as healthy as possible requires work.
Medical professionals who get it are incredible and I need to appreciate them.
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.