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.

 

 

 

Volunteers’ Week 2020

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The first week of June marks Volunteers’ Week across the UK, a week to say thank you to volunteers for giving up their time and celebrating work which is done by volunteers. I have been volunteering off and since since I was 15 and I personally think that it is one of the most rewarding things that you can do. You’re able to contribute time and skills to help people, often who are vulnerable, as well as gaining new experiences and opportunities, whilst making a huge difference. Not only that, but at some of the toughest times in my life, I have been able to hold on to the fact that I volunteer: it has given me a purpose and something to focus on when everything seemed impossible hard and has also forced me to think about something other than my wonky body or spiralling mental health. Put simply, I genuinely think that volunteering has saved my life.

As a teenager, I volunteered with Barnardo’s, a children’s charity, before being offered a paid position as a play and support worker. It gave me an escape from the reality of exams, applying to university and instead gave me confidence, new friendships and an escape. It was really tough at times, I was working with disabled children and young people, frequently people who were the same age as me and I was having to do intimate personal care, amongst other things. I very quickly learnt the importance of dignity and putting aside disability and treating service users like “normal” people. Most of my friends worked in retail, but I knew that retail wasn’t the job that I wanted to do. I would go to work and be having to restrain children for their own safety, if they became violent, I would have handfuls of my hair pulled out, I was urinated on and had sperm wiped in my hair (I wish I was joking) and I was dealing with medications and tube feeding and complex health conditions like it was nothing. I wasn’t really sure what I wanted to do with my life, other than being really interested in working with people and this job was my first paddling into the world of supporting young people with additional needs and I loved it.

I stayed in this, now paid, role for six years, working around university and living 200 miles away and gave as many hours as was possible in holidays. It’s only now that I look back, ten years on, do I realise how vital this volunteering position was. When I started, I was deep in the grief process, after losing a friend to suicide. I was struggling with my own health and being bumped around different hospital departments to try and figure out what was happening and I was unhappy at school due to the pressure of exams. My confidence was low but I was welcomed with open arms by a fantastic team of people: little did I know that my initial enquiry about volunteering would see the dark clouds above me start to fade away and bring new light into my life. Not only had I made a difference to people’s lives, I had also made lots of new friends and built my own confidence as well.

Fast forward to September 2018 and I started volunteering with Girl Guiding. In January 2018 I had been offered my dream job, working in children’s social care, but my declining physical health meant that I had to turn it down and instead forge a life on universal credit because I was too ill to work. I sent an enquiry to Girl Guiding to see if there was any volunteering that I could do. Initially this was purely because I was thinking about my CV and was forward planning for when I would be returning to work. The atmosphere in Girl Guiding has made it one of the best places I’ve worked. Everyone is awesome, and I don’t say that lightly.  Everybody goes into Girl Guiding with their own story and reasons for volunteering but one thing is certain, you cannot beat the passion and positivity from everyone you meet. The two hours when I was helping to run a Rainbow group (five to seven year old girls) quickly became the highlight of my week. It gave me my smile back when I felt very lost and without a purpose.

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Girl Guiding Killamarsh

My health deteriorated further over 2019 and I had a few months away from volunteering when I was in hospital. I remember being so anxious about returning and potentially having to face difficult questions. But yet again, I was welcomed with open arms and unwavering support. I didn’t face any stigma or discrimination, maybe because the other leaders had their own stuff to contend with too, I don’t know. It makes such a difference working with people who have a shared understanding, there was a mutual respect that we all had stuff going on in our private lives and sometimes we talked about it whilst always focusing on making the sessions as fun as possible for the girls. The diversity of the role means that even if you’re having a bad week, there is still a role for you. You can be sat dealing with the admin side of running a group or be actively playing with the girls and having fun with them.

Without a doubt, choosing to start volunteering as a teenager was one of the best decisions that I could have made. Continuing to volunteer throughout my twenties proved to me such a strong protective factor in my life that I now can’t imagine my life without volunteering in some respect. So whilst volunteers’ week is about saying thank you to volunteers, it seems only right to say “thank you” to all the people who saw the potential in me and allowed me to volunteer in the first place. You’ve made my life better because of it.

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.

Ehlers Danlos Awareness Month – FAQ

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May is Ehlers-Danlos Syndrome Awareness Month, and so far, I have been pretty quiet about it. However, now seems like a good time to answer some questions about EDS, that I am frequently asked.

What is EDS?

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue in the body. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones and make up over 20% of our bodies. There are 13 different types of EDS, caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents, or in some cases, the faulty gene isn’t inherited and can occur in a person for the first time. The most common type of EDS is Hypermobile EDS (hEDS, formally known as type 3) . Rarer types include classical EDS, vascular EDS and kyphoscoliotic EDS.

Does it hurt?

The simple answer to this is yes, it does hurt. I am on painkillers daily. These reduce some of the pain and symptoms that I experience but they don’t get rid of them. In some ways, I’ve got used to being in pain, so a lot of the time, I’m able to block it out and I’ve learnt to live my life around pain. I’ve got a fairly high pain threshold (never cried after breaking a bone kind of high). When I have an EDS flare, things can become more difficult because my pain levels become harder to manage. In these situations, I often have to increase the medication that I take and I’m usually found attached to a heat pack or hot water bottle. Increasing medication comes with its own issues, such as more side effects, so taking more medication isn’t something that I like to do.

Have you tried…?

Probably, yes. I have tried so many things to try and alleviate symptoms, with varying levels of success. Kale hasn’t cured me, nor has a clean eating diet. Similarly, eating quinoa hasn’t cured me. Different things work for different people, EDS affects every single person differently, so whilst a hot bath with epsom salts works for me, it might not work for one of my friends. Aside from medication and heat therapy, I have regular physiotherapy appointments, where my joints/tendons are put back into place or I have ultra-sound therapy, which is a non-invasive way of reducing inflammation in the body.

How did you catch it?

I didn’t. I was born this way baby. Ehlers-Danlos Syndromes are genetic conditions, so I have had EDS all of my life, I just didn’t know. As far as I know, no one else in my family has EDS, meaning that despite being symptomatic since the age of nine or ten, I wasn’t diagnosed until the age of twenty two, as no one was looking for it, or suspected it. EDS is also classed as a rare disease, which makes the diagnostic process longer and more complicated. On average, it takes ten years for a person to be diagnosed with EDS, from the first onset of symptoms. EDS UK ran an awareness campaign highlighting the length of time it takes to receive a diagnosis of EDS. You can watch the video here.

Can you have children?

I have no idea, mainly because I’m not in a position whereby I am trying to have children. However, the diagnosis of EDS in itself does not stop you from having children, but it can lead to a higher risk of complications for the mother and baby. I am very mixed about wanting to have children. In an ideal world, I would love to have children and I would love to be able to conceive naturally, but I am mindful of the fact that EDS if genetic, so there is a 50% chance that I could pass it on. I wouldn’t wish this condition on anyone and that includes any future children. EDS is an unpredictable beast: some days I am absolutely fine, with minimal restrictions, other days I can’t move from my bed and require care from another person for basic daily tasks. Having worked with children and young people who are young carers, that has to be something I will need to consider. Hopefully in time, I will be in a better position to properly decide what is best, because right now, I don’t have the answer.

When will you get better?

I won’t and I find it so difficult when people ask this question or say that they hope I get well soon, because I am not going to get better, in the conventional sense. I have periods of time when things are more manageable, and I lead a fairly normal life but the downside to that is the inevitable payback. And payback is a bit. In the five years since being diagnosed, my health has declined hugely, although that isn’t completely down to EDS, but also co-morbidities, such as gastroparesis and POTS. A future with EDS is sometimes quite scary to think about because I don’t know from one day to the next how functioning my body will be, but I have to remain hopeful that treatment options will improve with time and research.

Will you die from it?

This is probably the worst question that I have been asked, in relation to EDS and it’s such an important one to answer because of that. To make this question hit even harder, it was asked by a paramedic, whilst I was being rushed into hospital by ambulance. I reminded him that this job is to try and prevent me from dying. I know that he was asking out of curiosity because he hadn’t treated a patient with EDS before, but there’s a time and place. As I said above. there are 13 different types of EDS and vascular EDS can be life limiting due to the possibility of organ and vessel rupture. Life expectancy is not usually shortened with other forms of EDS. That said, conditions that are co-morbid with EDS can impact on life expectancy. If you have gastroparesis for instance and have intestinal failure as a result, the sad fact is that death from a lack of nutrition can and does happen. EDS can, in many cases, cause progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system. No one with EDS knowns what the future holds and emotionally, that is a big thing to deal with.

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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

 

 

 

 

 

 

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.

 

 

 

 

This Is Not Consent

Unless you’ve been living under a rock over the past few weeks then you will have heard about how a girl’s underwear was used as evidence in court, during a rape case. In the trial, the defence lawyer told the jury “you have to look at the way she was dressed. She was wearing a thong with a lace front.”

The 27-year-old man was found not guilty of rape shortly afterwards.

This case then led to a series of protests about how wearing a certain type of underwear does not equal giving consent.

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As a teenager, I was sexually assaulted. If you want all the explicit details about what happened, then you’re in the wrong place, because this is not the place to share them. I find it hard to speak openly about what happened, I have spent years blaming myself and analysing events, trying to work out how it happened and what I could have done differently.

But here’s the thing: I did not consent and just to make it really clear, my underwear did not consent on my behalf. When I was at university, someone said to me that I needed to consider how my behaviour and actions and what I was wearing will have encouraged him. That broke me and it was confirmation of everything that I had tormented myself with. However, I’m now at a point whereby I can recognise that my clothing did not play a part in what happened, I was wearing jeans and a jumper and even if I had been wearing a short skirt or a top showing my cleavage, that would not have been consent either.

Likewise, I know that my behaviour did nothing to encourage him. But again, had I been performing a strip tease and then changed my mind and firmly said “no” my behaviour still wouldn’t be consent.

I was not drunk. I had not been taking drugs. I was stone cold sober, fully aware of my surroundings and I was not wearing a thong. Using the argument that someone is wearing a thong and is therefore consenting completely bypasses the fact that you can’t see a person’s underwear until their clothing has been removed.

Some people would like to think sexual assault is just a result of miscommunication, especially if the victim has some tie to the perpetrator and believe the perpetrator to be incapable of doing such a thing. Let’s put it very simply: unless a person clearly says “yes” to any form of sexual contact then you can’t assume and go ahead with sexual acts.

Likewise, asking a person if they were under the influence of alcohol doesn’t then mean that the assault was justified. By asking if someone was drunk, you’re asking if they were openly making themselves more vulnerable and therefore “asking for it.”

Anyone who has experienced a sexual assault knows how damaging victim blaming can be. Being asked what you were wearing or how you were behaving or even worse, why you didn’t fight back is so harmful. Only last month, women in London were being warned not to wear headphones or use mobile phones because of a number of sexual assaults. Yes, you need to be aware of your personal safety, regardless of gender and sexuality, but the only people who are responsible for sexual assaults are the perpetrators. Headphones don’t rape women, nor do their outfits or undwear or dark streets or clubs or alcohol and drugs or parties.

Don’t get me wrong, the people are carry out sexual assaults are in a minority and it is not a case of all men are bad. Women can also be perpetrators but we don’t see men being warned against wearing headphones. The reason that rape culture remains such as issues in the 21st century is because rape is still prevalent and sexual violence is normalised and excused in the media and popular culture: a women’s underwear being used as evidence in court is a perfect example of this. Women’s rights and safety are being disregarded by the very people who are meant to protect.

Women’s rights are human rights, and the blame has got to be shifted from women who suffer sexualised violence  or assaults to men who inflict it upon them. People are told that they wouldn’t have been attacked on the street if they weren’t walking alone, almost as if it was an inevitable event. That isn’t okay.

In the years since I was sexually assaulted, I have swung from blaming myself to being able to acknowledge that it was not my fault and then back again. Sometimes I feel utterly repulsed by myself, other times I feel repulsed by him. I’ve spent years in counselling and therapy, trying to come to terms with what happened. I can talk about the facts, but not the emotional side of events. But the thing is: I did not say yes and fundamentally, that was not respected.

The death of my dad: twenty five years on

This week marks twenty five years since the death of my dad. It’s a bit of an odd time of year, if I’m honest, because my dad died two days before my first birthday so going from two extreme moods in such a short space of time always messes with my head a bit.

Something I’m asked quite often is if i miss my dad. It’s a hard question to answer because it’s difficult to miss something or someone you don’t know. I don’t have any memories of my dad, although we is talked about openly by family and friends. At times, I miss the idea of having a dad and I miss the idea of having a more conventional childhood. But realistically, the conventional childhood of two parents and 2.4 children is becoming less common and “normal”.

As a child, I can remember times when I was embarrassed by the fact that my dad wasn’t alive. That might sound odd, I think it was linked to not wanting people to feel sorry for me. When I was in year three, my class teacher asked me, in front of the whole class, why my mum had only put down for one ticket for an event at school. I didn’t have the confidence to say in front of everyone that it wasn’t a mistake, it was just my mum and I and, actually, my dad was dead. That was my normal, but so very abnormal to other people.

By the time I reached my teenage years, I became more comfortable in telling people that my dad was dead. I met other people who had experienced bereavement and I didn’t feel as isolated. As my understanding grew, so did my outspokenness. One of my biggest frustrations is being lumped under the single parent umbrella. My mum did not choose to raise mess a single parent: when you have a child with a person that you love, you don’t envisage that it will result in raising the child alone, be that as a result of divorce or separation or death of a parent. I am from a single parent family, as are many of my friends, for various reasons. I defied the statistics and wasn’t suspended from school (the opposite, I went through school without ever getting a detention), I completed my a-levels, I didn’t and still don’t have a criminal record and I was not a teen parent. I valued my education.

When you lose a parent, it’s the big milestones that can really test me. The big birthdays, the achievements, the weddings and the thought of potentially having children, in future, and them not knowing their grandfather. However, as time goes on, I’m able to see them as a chance to remember and celebrate their part in my life rather than simply suffering through these events all the time. I’ve also learnt that not everyone will get it. Please, don’t bitch about your parents in front of me, unless you have extenuating circumstances. I’ll never forgot, at the age of ten, one of my peers told me that I was lucky that my dad was dead, because it meant that it was one less parent I’d have to convince if I wanted something. Sure, I’m really lucky. Get some perspective on how truly fleeting life is. This is a club that I never wanted to join and yet I can’t revoke my membership.

Having lost my dad at such a young age, I get very anxious at the thought of losing my mum. Obviously I’m not stupid, no one is going to life forever but the thought of her dying makes me want to physically throw up. For my whole life, it’s been my mum and I, battling against the odds and ridings and ups and downs and the thought of facing life alone or without her really scares me. When I was a child, I used to panic beyond belief whenever my mum was ill, even if it was just a cold. It puts me in a situation completely out of my control and I hate that.

Life does go on, but there will be times even all these years later, I will still break down like it happened yesterday. When those moments happen, I’m not sure why I’m breaking down, because I don’t know any different. This is my reality.

 

 

October Favourites

Ah it’s now officially autumn, my favourite season! This month has been pretty busy, by my spoonie standards, but I’ve still found plenty of time to curl up on the sofa, with my duvet and the fire burning, being a proper little hermit.

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Keep reading to find out what I’ve been loving this month.

Books

Only one book recommendation this month, as I’ve been slacking a bit with reading. I also haven’t had as much spare income, so I’m having a bit of a break from buying books. Sob. I went back to my childhood by reading My Mum, Tracy Beaker by the one and only Jacqueline Wilson.  As a child, I loved Jacqueline Wilson books, although unfortunately, as an adult, I loved this book a little less. I enjoyed the idea of Tracy Beaker returning, with a child, but Tracy is yet to grow up and behave like you would expect an adult to behave. I can’t comment on other books by Wilson as it’s been so long since I have read them, but it took a long time to fully get into the plot. That said, there are strong messages around happiness, money and family values and I love that the book explores relationships outside of the traditional hetro-sexual ones normally seen in children’s books.

Film/TV

The arrival of autumn means that all the good TV series are back and this year has not disappointed. Strictly Come Dancing continues to sparkle on Saturday evenings, with the added controversy of Seann and Katya and That Kiss.

Outside of the world of glitter and sequins, October saw the start of series 14 of The Apprentice. I’ve only been a hardcore fan of The Apprentice for the past few years and always worry that the series will burn out and become repetitive but thus far, this series seems to be pretty strong, with the usual mix of good business ideas and crazy levels of arrogance.

The BBC is excelling itself in new dramas at the moment, including Killing Eve and The Informer. Killing Eve has been a real wow of a series, with a strong female cast, seeing Jodie Comer take on the role of a sociopathic serial assassin, being hunted and investigated by Sandra Oh. In a series full of twists, these two fierce women, both equally obsessed with each other, go head to head in an epic game of cat and mouse, toppling the typical spy-action thriller, which we are used to seeing on our screens.

Spoonie Favourites

Over the past few months, I have been struggling more and more with pain. I am reluctant to increase any of my opiate medication anymore than I already have done, which has led to me exploring other pain relief options. So, today I had my second acupuncture session, to see if this can help with some of the pain and/or symptoms of gastroparesis. I’m yet to feel any benefits from it and if I’m honest, the sessions have left me feeling a little odd, thanks to a combination of losing sensation in my hands and feeling very spaced out, which I’m told is normal and should lessen as the sessions continue. But I am finding the overall experience relaxing which I guess is half the idea.

It’s no secret that I love pyjamas, I probably have more pyjamas than I do real clothes and I am totally okay with that. One of the best things about the change in season is new pyjamas and I am loving the pyjamas in White Stuff. They are so soft and cosy the the Midnight Bloom bottoms are my new favourite pyjamas.

Odds and Sods

At the very beginning of the month, I stayed with a close friend, who lives in London and went to the theatre to see Everybody’s Talking About Jamie, It was outstanding and possibly one of the best shows I’ve ever seen on stage. Based on the BBC3 documentary, Everybody’s Talking About Jamie follows teenagers Jamie New achieve his dream of becoming a drag queen and going to his school prom dressed as a drag queen. With themes such as prejudice, bullying, family relationships, race and culture, this musical could not be any more relevant for a 21st century audience. It is funny, raw, a little bit fabulous and very sassy. I walked out at the end wanting to see it all over again.

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