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.

 

 

 

I’m Doing Okay

I feel really uneasy publicly saying that I’m okay and that things are going well. Not because I need validation around being ill, but because I am a little bit scared that somehow talking about things being okay will jinx the situation and things will start going very wrong. But I can’t live my life in fear and actually, for the first time in a very long time, I am happy, content and enjoying life. Obviously the whole corona-coaster thing is problematic and it throws up issues, but as I said in my post about dealing with lockdown and mental health, I am coping amazingly well.

So what has changed?

A few weeks ago, things were not this good. The exact opposite in fact. As it happened, the referral into the mental health team, that was suggested, was refused and the additional meds that I was put on didn’t work for me, and I think that this is the best thing that could have happened. I decided to take control of my own life and to stop coasting through, depending on other people. It came down to mind over matter, although I want to make things very clear at this point, that I do not think that this is a clearcut “cure”, not for me or for anyone else. My problems haven’t magically disappeared, but I made the choice to start addressing things, instead of self destructing and living in a mindset where I had given up.

I know and accept that I still need help, but I want to be in control of that help and to get support in a way that I find is beneficial for me. My experiences with the community mental health team were poor, I would leave appointments feeling worse than when I entered, I was made to feel like I wasn’t sick enough to receive help, despite being very unwell and I felt that I wasn’t in control of my own life or choices. I’m still engaging with therapy but for the first time ever, I am viewing it very differently. I have been having therapy in varying forms for years and years and had always just accepted that I would have therapy for life and that was that. But now, without setting myself a time limit, there are certain things that I know that I need to work on, and more importantly, I feel ready to work on. It’s not going to be an overnight thing, it is still probably going to take years of work but I’m not going to just tread water and not move forward.

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Olive and Frank

I’ve also learnt what works for me and what doesn’t. My choice has been to engage with services such as Mind and other local charities, and dip in and out when I need support. I’m not pinned in and it isn’t time limited. Plus, the wellbeing workers who I have met before, are all good eggs and genuinely care and want what is best.

Most importantly, I am making plans for the future. I’m using my time off work sensibly and working on continuing professional development, as well as undertaking various online courses to improve my CV in the long run. I’m really excited to say that I have applied for a masters degree in social work and I’m currently going through the agonising wait in hearing back from the university. I am making plans around moving out and setting myself goals in achieving that.

It’s crucial to say, I am not naive. I don’t think that I am magically better. There are still things that I am struggling with, a lot, but I am accepting those things and being honest about them. My physical health is still problematic and causes its own limitations and that is always going to be something that I have to work around. I’m also not kidding myself into thinking that my mood and ability to cope will not, ever, fluctuate again. But I kind of feel more prepared for that. Small steps. That’s all anyone will ever ask for.

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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.

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

 

 

 

 

 

 

Things I’ve Learnt: 2018 Edition

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

 

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

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

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

2018 Favourites

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Well, we’ve made it to the end of 2018: a year which has caused the British population to overdose on Brexit, we had the Beast from the East and the hottest summer in forever. Baby Shark made us want to spoon our eyeballs out and the I’m A Celeb Class of 2018 gave us the ultimate body confidence song, I Like My Bum.

I’ve really enjoyed writing about my monthly favourites, throughout the year, so it only seemed right to reflect on the whole of 2018 and the things that I’ve loved.

Books

My stand-out book of the year has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. Since first reading this book in May, I have gone on to re-read it numerous times, each time picking up different aspects of the plot that I hadn’t noticed when reading before. I’m really pleased that Khan is releasing his second book in early 2019.

Another book which I have to mention is We Are Young, the latest book by YA author, Cat Clarke. Having only discovered Cat Clarke this year, I very quickly made my way through all of her books and it is a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue. What I loved most was that Cat writes about mental health in such a sensitive yet balanced manner. She doesn’t sugar-coat how difficult being a teenager can be and We Are Young also touches on the government cuts to mental health services and youth services and how this impacts on the most vulnerable in society. I can’t wait until Cat’s next book is out. No pressure Cat!

A book that hasn’t featured in any of my previous monthly favourites posts is Vox by Christina Dalcher. This book was extraordinary, so much so that I read it in one sitting. It’s very unlike any books that I normally read, but I was drawn to it because of the linguistic and neurolinguistic element in it. In dystopian USA, women and girls are limited to speaking only one hundred words a day. This is measured by a word counter which is fitted to their wrists, speaking over one hundred words means that the bracelet emits an electric shock, which then intensifies. Think 1984, with a neurolinguistic twist, I really loved it.

Films/TV

Like most of the British population, I was obsessed with Love Island and still feel that there is a hole in my life, come 9pm, as it’s not on TV to watch. Despite this, however, I will fully admit that Love Island is not a healthy representation on society and it highlights many issues, with how women are viewed and treated. I wrote a blog post about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island was a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Obviously I can’t write about my yearly favourites without mentioning Strictly Come Dancing. As always, I have loved loved loved this series, especially with the added controversy and drama. Stacey and Kevin were well deserved winners, having had the SCD journey, with Stacey going from complete novice to a talented dancer.

My stand-out TV programme of the year has to the The Bodyguard. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

As for films, the ones I’ve loved the most are Ladybird, Mamma Mia: Here We Go Again and Wonder. 2019 is looking good in terms of film releases and I’m especially looking forward to Toy Story 4 and Lion King.

Spoonie Favourites

The Body Shop has to have a mention here, as their skin care has (mostly) kept my skin in reasonable condition, when I haven’t felt eel enough to properly look after it. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup or having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. Products which deserve a mention are: Tea Tree Anti-Imperfection Night Mask is specifically formulated to care for blemishes and imperfections whilst you sleep and the hydrating face mists which saved my skin from heat induced sweats over the summer.

Another spoonie favourite from this is Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up, or when I’m bloated. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I’ve lived in Tesco jeans, since discovering them earlier in the year and I’m so impressed by the longevity of them. They’ve faded slightly but for the most part, they still look as good as when I first bought them.

This year, I invested in a memory foam pillow. Where has this been all of my life? Thanks to EDS, I have endless issues with my back, neck and ribs and need a pillow which offers support and it fairly firm, to support my wonky bits. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. It smells so much better than bio-oil, is less greasy and is absorbed more quickly. It hasn’t got rid of my stretch marks (that would be asking for a miracle) but they have improved: they aren’t as red or deep.

 

Odds and Sods

My first Odds and Sods yearly favourite overlaps with Spoonie Favourites. Last year, I stumbled across Spoonie_Village on Instagram. Run by the lovely Hayley, there is also an etsy shop, where you can buy all sorts of spoonie related items such as postcards, stickers, notebooks and calendars. I honestly can’t praise Hayley enough, her illustrations have made me smile during some really dark times this year and I can’t wait to see what 2019 brings.

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Over the summer, I was well enough to travel up to York, where I spent the best three years at uni, to catch up with old friends an lecturers. York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I’m able to look back on my week in York and remind myself that 2018 hasn’t been all bad, and I’m very lucky to have such supportive friends, dragging me through the tough bits.

My final favourite is the general blogging community over on Facebook and Instgram. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen, especially Amy, Pippa and Jenna.

 

 

 

 

September Favourites

Okay, so I know that I say this pretty much every single month, but how are we almost at the end of September?! I feel like I’ve blinked and nine months have passed without me realising. I could have had a child in this time. Obviously no children are planned any time soon.

Onto the things that I have been loving this month!

Books

For various reasons, I haven’t been able to do a lot of reading this month. I have just started reading the forth book in the Cormoran Strike series, Lethal White by Robert Galbraith. Crime thrillers are one of my favourite genres to read so I was really excited when I found out that this had been published. The books are complex and engaging and Galbraith (pseudonym of J.K. Rowling) has succeeded in making the characters real and believable. As much as I loved the Cuckoo’s Calling, the first book in the series, I think that Lethal White could very quickly become my new most loved book in the series. I can’t wait to sit down and read more!

TV/Film

People who know me well (actually not even well) will know that I love September for one big reason. Strictly Come Dancing is back!

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I am SCD obsessed and rarely miss an episode. If I miss an episode, it has to be for a very good reason and when possible, I will avoid all social interaction on Saturday evenings until the series ends. I’ve already got various opinions on the contestants, along with the professionals and Stacey Dooley and Faye Tozer are already my favourites.

I can’t write a September favourites blog post without mentioning The Bodyguard. Just wow. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

Spoonie Favourites

I am not ashamed to say that with the more autumnal weather, my electric blanket has made an appearance. Autumn and winter are my preferred seasons, I love fluffy jumpers, scarves, Ugg boots and cosy evenings in front of the fire but my joints aren’t so keen on the colder weather, especially if there are any sudden temperature drops. My electric blanket is an essential piece of equipment not only to keep me roasty toasty but also to help save my joints from seizing up. My cat loves the electric blanket too!

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Since being diagnosed with gastroparesis, I have struggled more with musculoskeletal issues in my shoulders and neck, or as my phyiso refers to the matter “sick muscle problems.’ I mean, she’s right, if a little blunt. During a recent physio appointment, I was told that my neck felt like it had a concrete rod down my neck and it felt very similar to me. I already had a V-shaped pillow but it wasn’t very supportive, so I have invested in a slightly more expensive one, which gives more support. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

On the same theme, this month I also invested in a memory foam pillow. Where has this been all of my life? Because of above reasons, I need a firm pillow and the memory foam pillow has done the job. I love my bed anyway, but the new combination of a memory foam pillow, new V-shaped pillow and my electric blanket and I might just set up home in my bed.

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Odds and Sods

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. Time will tell, but it smells so much better than bio-oil, is less greasy and is absorbed more quickly.

August Favourites

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Welcome to another monthly favourites post, looking at all the things I’ve been loving in August! This month seems to have flown by and it’s mad to think that we are nearly in September. Bring on the cosy evenings in front of the fire, fluffy jumpers and Ugg boots. People who know me will know that I’m not a huge fan of summer and much prefer freezing cold winter days…I can’t wait.

Due to being pretty unwell over the past four or five weeks, this post is probably going to be a bit shorter than my usual monthly favourites posts, simply because in between a lot of sleeping and a lot of time being spent in hospital, I haven’t really done a lot to warrant favourites. But anyway, here we go…

Books

Last month, I talked about Holly Bourne’s first adult fiction book, How Do You Like Me Now? which has recently released and that I had fairly low expectations, as her last young adult fiction book which had been released prior to that, wasn’t that great and felt rushed. After reading her latest release, back under the YA fiction umbrella, I can confirm that Holly Bourne is back. Are We All Lemmings and Snowflakes is possibly Holly’s best book, with a strong and unique plot line. As per her other books, Holly has focused on mental health, normalising it and reducing the stigma. The book follows Olive, a teenage girl living on the edge of a mental health crisis, who is given the opportunity to attend a summer camp for teens struggling with mental illnesses. Through her own experiences, Olive begins to put together a plan to not only solve her own mental illness, but the mental illnesses of everyone in the world. It is raw, compassionate and explores mental health in a sensitive but informative way.

Another book that I have enjoyed this month is Don’t Stop Thinking About Tomorrow by Siobhan Curham. This is another book which has been beautifully written, looking at issues surrounding young carers and children and young people with refugee status in the UK. Stevie lives with her mum, on the poverty line, after her mum’s benefits are stopped. Hafiz is a Syrian refugee. Both are big dreamers and as their friendship develops, they begin to understand their similarities as well as their differences. Having experienced the benefits system, parts of this book really resonated with me: Siobhan highlights how powerless you end up feeling, when you are treated as nothing more than a statistical figure as opposed to a person.

Films/TV

Over the past few months, I have been watching Ackley Bridge and have ended up getting kind of hooked to it. When Waterloo Road was being shown on television, I was obsessed with it and now have the box set on DVD, which keeps me sane when insomnia strikes. Ackley Bridge is similar to Waterloo Road, in that it focuses on the lives of various students and members of staff at Ackley Bridge College. It’s probably not going to win any awards but it’s worth watching if you need something that doesn’t require much concentration. Series one and two are available to watch online now.

This month I did something very rare for me and went to the cinema to see Mamma Mia: Here We Go Again. My mum and I both love Mamma Mia, it is our go to film on rainy days, so it was only right that we went to the cinema to see the second film. I was a bit skeptical about it and wasn’t sure if it would live up to the hype and expectations but I loved it. It really is a proper feel good film (ignoring the gut wrenching scenes towards the end) and Lily James is beautiful.

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I am so excited that the line up to Strictly Come Dancing has been announced. Reminder to all my friends: don’t expect me to socialise on Saturday evenings once it starts!

The Great British Bake Off is also back soon. After just about getting over the move from the BBC to channel four, I am able to admit that actually, the new line up works well. I’m still loyal to Mary Berry but as the presenters and judges have gelled, it doesn’t feel as cringe to watch and for the most part, they are funny.

Spoonie Favourites

Let’s talk about pyjamas. I spent a lot of time in my pyjamas and if I got my own way, I would spent a lot more time in pyjamas. Because of this, I take pyjama buying very seriously. The majority of my pyjamas used to be M&S but recently, I’ve been disappointed in the quality of them, especially as they shrink in the wash and end up as angle swingers. That’s saying something considering how short my legs are. Having tried various other brands including Matalan, Tesco and Fat Face, I ended up buying a couple of pairs from Sainsbury’s and I can’t fault them. They are super soft, cosy and don’t shrink in the wash. They’re also fairly cheap, so any excuse to buy more!

Odds and Sods 

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Having gastroparesis means that food is something that I have come to dread, rather than enjoy, so finding foods that I’m able to eat without being sick and actually taste nice is fairly unheard of. I came across the brand Pudology, who make gluten and dairy free desserts, which is perfect for the diet that I have to follow. They taste so good and so far, I seem to have been able to eat them without any vomiting, which is great news!

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

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I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.