Spoonie Essentials

I Am a Spoonie

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.

Books

  1. Hyperbole and a Half – Allie Brosh
  2. The Truth Pixie – Matt Haig
  3. Living With the Enemy – Ray Owen
  4. The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
  5. Miranda’s Daily Dose of Such Fun – Miranda Hart

TV/Film

  1. Five Feet Apart
  2. Brain on Fire
  3. Atypical
  4. Groundhog Day
  5. We Are Visible

Podcasts

  1. Sickboy
  2. This Is Not What I Ordered
  3. Chronic But Ironic
  4. Feminists Don’t Wear Pink (Scarlett Curtis)
  5. Shagged, Married, Annoyed (Rosie and Chris Ramsay)

YouTube

  1. Amy’s Life/Amy Lee Fisher
  2. Life With Stripes
  3. Georgina’s Journey
  4. Chronically Jenni
  5. Jessica Kellgren-Fozard

Health Care Esstentials

  1. Dry shampoo (Batiste or Colab Dry Shampoo)
  2. Body Shop Almond Milk Body Yogurt
  3. Au Lait | Scottish Fine Soaps – Body Butter
  4. Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
  5. Amie Petal Perfect – Cleansing Micellar Water

Snug as a Bug

  1. Weighted blanket
  2. Hot water bottle
  3. Heated blanket
  4. Wheat Pack
  5. good pillow (I have a V pillow and a memory foam pillow)

Odds and Sods

  1. Large medication box
  2. A support system (friends, family, health care professionals, people who just get it)
  3. Technology to keep connected to the outside world
  4. A bag – fashionable but sensible. Mine is similar to this
  5. Mobility aids (crutches, wheelchair, cane, walkers etc)
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Spoonie Authors Network

NB – If you aren’t familiar with the Spoonie Theory, click here

June Favourites – Lockdown Edition

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Books

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

 

Film/TV

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!

 

Spoonie Favourites

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.

 

 

 

Dating and Chronic Illness

I am single. Happily single most of the time, however that’s not to say that I don’t date and I haven’t been in relationships. I do date and I have been in relationships, just right now, I am single, a cat lady and I love to starfish in my bed.

If you had asked me as a teenager, I should be married by now and well on the way to the 2.4 children that is the average. Life had different ideas for me and I feel mixed about that. It’s not that I don’t want a relationship: I have profiles on two online dating apps and I have been speed dating (that was an experience in itself!) but I am aware that I come with additional baggage and that can be a lot for someone else to take on. There are days when it feels like I haven’t come to terms with having long term illnesses, so how can I expect someone else to take that on as well?

Honestly, my experiences of dating with a chronic illness have been mixed. Trying to decide when to tell someone about the various chronic illnesses that I have is hard. Telling them too soon and they are likely to freak out, tell them too late and they are likely to be annoyed that you didn’t say something sooner.

I had a pretty bad experience with someone I met through an online dating app, I made the decision not to say anything about my health but I constantly felt like I was deceiving him. Things were going really well, but it got to the point that I had to tell him that I wasn’t well. I had just been offered my dream job but had to turn it down due to worsening health issues and obviously he asked questions about why I wasn’t in work. I explained that I had long term health conditions and because of that, I was in hospital a lot and not able to currently work. In an instant, it was clear that he had lost interest but also very clear that he didn’t really understand when he said “but you look fine?” Date night came to a rapid end and I never heard from him again. I’m not going to pretend that I was heartbroken, I wasn’t, but I was hurt, mainly because I expected better than that reaction. I had hoped that given he had got to know the “real” me, he wouldn’t be completely freaked out by what I said. How wrong I was. It hurt because it made me feel unloveable, a feeling that I have now experienced one too many times.

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Learning from that experience, I decided to be honest earlier on in getting to know someone. And that didn’t go well either. I tend to start with the caveat similar to “this is a lot to take on, so I’m telling you now so that you have the choice to leave before we get to know each other better.” I don’t know if it’s the right thing to say, but it’s kind of giving them permission to run away and not feel like a dick about it. I get hurt, but hey, at least I’ve spared their feelings! On one occasion, I was asked numerous questions and felt like I was being interrogated. Then there was the radio silence, never to be heard from again. On another occasion I was told that it wasn’t going to work because he didn’t want to be with someone who would break during sex. For clarity, I do not “break” during sex. Another time, they had the decency to carry on talking to me for about ten minutes before disappearing into the abyss, never to be heard from again.

And I get it. It is a lot to take on. Quite often people can’t see beyond the illness or understand that if you take away all the health conditions, I am still a normal woman in her twenties, eventually wanting to settle down and think about having a family. Whilst I might joke and say that they weren’t the one, that doesn’t take away the hurt. It doesn’t take away from the fact that I feel undeserving of love because it’s too much for someone else to take on. It doesn’t take away from the fact that being loved for how I am is too much for the majority of people to take on. So yet again, I am left with having to pick myself up. I leave it for a while before dipping my toe back into dating, telling myself that this time, it will be different. I’m yet to have an experience that is different. I’m yet to meet someone who is fine with the fact that I’m a bit wonky and my body does weird things, but is prepared to love me for that. As well as feeling unloveable, I feel faulty. Like, can I return to sender and get a working body please? One that doesn’t freak people out.

Who knows, maybe in a year from now, I’ll look back at this blog post and smile because I am happy and in a relationship. Or I might still be psyching myself up to dip my toe back into the dating pond.

I don’t think there is a clear cut answer on how to address chronic illnesses when it comes to dating. I’m sure there are good people out there who understand, I’m just yet to find them.

Dear 18 Year Old Self

Dear Laura,

You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.

Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!

Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.

Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.

Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.

Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.

Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.

Make memories. Take photos.

Stand up for yourself.

Risk it.

Find and enjoy whatever it is that makes you happy.

Respect yourself and respect others.

Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.

Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.

Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.

You’ve got this,

Laura x

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Emily McDowell

 

 

30 before 30 – An Update!

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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.

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Copenhagen, Denmark 2016

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.

5) Marry.

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.

14) Raise £1000 for Blue Skye Thinking.

I raised just over £500, so I’m happy with that.

15) Write a book.

Ahhh I don’t know about this one. So many people have said that I should write a book and there’s part of me that would like to, but the thought of it also fills me with so much anxiety.

16) Publish an article for Huffington Post.

Done! And I have also had articles published on The Mighty.

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17) Meet some of the people who I have met online and thank them in person for all they have done for me.

This list is ever growing but I have been able to meet so many people, who I originally met online, including trekking up to Scotland and meeting friends there.

18) Cuddle an orangutan.

I’d love to do this, but I’m more aware about conservation and actually, cuddling orangutans isn’t good for them.

19) Complete the North Wales zip wire.

I’m still desperate to do this.

20) Teach young people to not be ashamed of who they are.

I’d like to say that I try and do this in day to day life, it’s something I’m really passionate about and I will forever be people’s biggest cheerleader.

21) Become and MP and fight for what I believe in.

No and right now this is not part of any plans. I am interested in politics but I’m more comfortable contacting my current local MP and having a rant on twitter.

22) Learn basic Polish.

This hasn’t happened, but I have self taught myself British Sign Language and Makaton/Sign Supported English.

23) Thank every single person who has made a difference to my life.

I probably haven’t thanked every single person, but I do make a point of thanking people regularly.

24) Go to a festival and not spend the entire time grossed out by the toilets.

Let’s be realistic here, I can’t think of anything worse than festival toilets. I’ve gone to festivals on a day ticket and that’s enough for me.

25) Visit all of the the seven wonders of the world.

See above for why travel is complicated.

26) Live for a week without internet, TV, phones etc

I haven’t done a week, but I have spent a long weekend away from social media/TV/my phone, when I was visiting a therapeutic farm and living in a therapeutic community. I was not a fan.

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Kent, England

27) Go to Wimbledon men’s final

Maybe one day.

28) Leave a note for a stranger in a public place.

I’m not sure if I’ve done this or not, but if I have, I’d like to do it again.

29) Learn how to take a compliment 

I’m getting there, slowly. It still makes me feel uncomfortable and like I want to hide under a stone but there has been progress.

30) Fall in love, deeply, properly and unequivocally.

I have fallen in love but not romantically. There’s plenty of time.

How to Talk to Someone With Depression

Depression can really change how a person thinks and perceives information. It can cause friction between friends and family members and often lead to a person feeling even more isolated. Depression is a mental illness that can affect anyone. It is not something that you can simply snap out of or a sign of weakness.

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Mental Health Foundation

Below are some ideas around talking to someone with depression and questions that might be helpful.

Ask if they have had anything to eat or drink. If not, suggest having a glass of water and have something to eat if they can manage it. Talk about healthy and quick options, to avoid carb-loading which is likely to only give a quick burst of energy. Foods that are rich in protein are good. The thought of cooking for yourself when you are deep in depression can be too much to even consider, so offer support in buying healthy and nutritious ready meals that can be shoved in the freezer and cooked easily.

At the risk of sounding like someone from a crisis team, asking someone if they have had a bath or shower when they are feeling awful is sometimes an idea, providing the person is able to keep themselves safe in doing so. Self care is terminology which is thrown around by crisis teams very readily, but there’s no denying the fact that feeling clean is going to make you feel slightly better about yourself than being unclean. I get it, I really do, the energy and effort involved in having a bath or washing my hair means that it’s the last thing I want to do when I am depressed, but I try to remind myself that I deserve to be clean and I deserve to look after myself.

Again, at the risk of sounding like I am regurgitating snippets from the crisis team, encouraging someone to stretch their legs and move from their bed or the sofa is a way of showing that you care. I am not for one moment suggesting that you need to be walking miles in the picturesque countryside or be running a half marathon, but a quick walk around your immediate local area is enough to get those endorphins zipping around. Gentle exercise in the home is an option if you can’t face leaving the house, you can find lots of simple home exercise routines on Youtube, if you can’t face watching a highly positive and energetic fitness blogger and the NHS has home workout videos which are easy to access and follow.

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A big part of depression is shutting yourself away from people and not engaging with friends and family. This is definitely something that I do and I am fortunate to have a really support group of people around me, to check in with me and talk rubbish to distract me from the mess inside my head. Encouraging people to talk can be with friends or it could be with a medical professional. Ask if they have had any medical input and find out when the next planned contact will be. You can work out if you should be encouraging them to make contact with a professional sooner, or, if it can wait, suggest writing things down, to share next time there is contact. Don’t be afraid to offer physical contact, like hugs, but know that this doesn’t suit everyone. Whilst I love a good hug or cuddle, I know that for some people, this is their idea of hell, so knowing what works for the individual person is important. Pets are also a value source of companionship and support.

Ask if they have had any changes in medication and if they are taking their medication are prescribed. New medication can really mess with your head, especially in the early days when withdrawal is a risk and side effects of new drugs are more prevalent. Make sure that they are safe, as some medications increase suicidal thoughts and ideation and then wait it out with them. If things don’t improve after a few weeks, suggest contacting their GP.

If you don’t know what to say, just say that: tell your friend that you are there for them. As a humans, we want to immediately have the answers and be able to solve every single problem that we are faced with but sometimes, that isn’t possible. Let them know that you’ll be there, don’t accuse, threaten, blame, or make light or joke about how they might be feeling. Reminding a person that you care is one of the most important things that you can do. Knowing that you’ve got someone holding you up and fighting the beast alongside you is less isolating and is a reminder that you matter.

It’s worth remembering that what works for one person might not work for another. Asking how you can help and if there is anything in particular that would be useful is another way of showing that you care. Not everyone is open to the offer of help, not everyone knows what help they need and what you think is helpful and what they think is helpful could be two very different things.

Even if you can’t relate to a person’s problems or they seem insignificant, don’t belittle how they are feeling. Try to resist solutions that might seem simple to you. Most importantly, don’t make judgements on how they are feeling. Everyone’s feelings are valid and we all react in differing ways to situations. That doesn’t make us wrong, weak or defective, it makes us human.

Mental Health Awareness Week

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So as I said in my last post, my May favourites: lockdown edition, it has been well over a year since I last sat down and put pen to paper. The main reason for that is because 2019 was a really awful year. Towards the end of April 2019, I was admitted as a day patient at a psychiatric hospital, near to where I live. Things had got very bad, very quickly and I plummeted into crisis point without much warning. The care, compassion and support that I received from hospital staff was amazing. They genuinely saved my life and that isn’t something I say lightly.

After three weeks in hospital, I was transferred to a step down provision, which is jointly run by Mind and the NHS and I was there until July. It was, undoubtedly, one of the hardest things I have gone through. Having struggled for over ten years with my mental health, I never expected it to get to a point whereby I needed to be in hospital for my own safety. It was new and scary but made so much easier by the fact that I was treated with dignity throughout and made some wonderful friends. We laughed together, cried together, despaired together, rolled our eyes at other patients and ultimately, supported each other through a horrible time.

I was discharged in July and for a few weeks, it felt like I could take on the world but it quickly became apparent that I wasn’t yet ready for the world (and the world wasn’t ready for me) so at the end of August, I was readmitted and remained a day patient until the middle of December, when I was very suddenly discharged from all mental health services.

Having spent over six months in some form of day patient provision, to suddenly be faced with going it alone was a terrifying prospect. I soon worked out that it would be sink or swim and that I would have to work very very hard in order to stay out of hospital and to try and rebuild my life.

A year on since my first admission, I think I’m doing okay. Things are different, but good different. I have a job that I love, I’m working with the best people who make me cry with laughter and I am incredibly fortunate to be surrounded by endless support and understanding from my line manager and senior staff. Juggling a job, mental illnesses and chronic illnesses is hard at times, but I’ve never been made to feel inferior to other members of staff or like an inconvenience.

Obviously it hasn’t all been plain sailing. The past few weeks have been challenging, not because of covid or lockdown, more because it hit hard when it got to a year since being admitted. I’m the first to admit that I am hard on myself and there was quite a lot of beating myself up behind the scenes because I’m not where I expected to be or where I want to be in life. I was referred back to the mental health team, however the referral was refused. At the time, I was angry and felt let down, but a few weeks on and I think that the referral being refused was the best possible outcome. I don’t want to be under the mental health team and constantly be having to prove that I am sick enough to warrant their care: I want to get better and I want to get better for myself, not so services can put a tick next to my name and say that they’ve cured me. I don’t think I’ll ever be cured, I think I’m always going to struggle to some extent with mental illnesses, but I am learning to live my life along side them, instead of them dictating my life and my choices.

It’s a really cliched thing to say but my experiences last year changed me, but they changed me in a good way. It made me realise how passionate I am about mental health and the link between mental and physical illnesses. It taught me that sometimes, the only way out is through. Sometimes there isn’t a quick fix and you’ve just got to ride out the shit times and catch that bear.

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There’s so much I could say about it being mental health awareness week. But the simple fact is that we are aware. There is so much awareness, what there isn’t is adequate support for people who are struggling. We are told, time and time again, to reach out and ask for help, but so often that is ignored, or you’re made to wait an inexcusable amount of time, or you’re given the most basic input because it’s deemed to be the most cost effective. This country has a problem and that problem is that mental health is not seen as a priority. One in ten children and one in four adults will suffer from some form of mental health problem at some point and quite frankly, being kind is not enough to stop that. There needs to be more funding, better research into best treatment methods, more early intervention, less silencing through medication and more treating people are individuals. Until that happens, sadly, I can’t see much changing.

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.

 

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!

 

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