Spoonie Essentials

I Am a Spoonie

I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.

Books

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

TV/Film

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

Podcasts

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

YouTube

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

Health Care Esstentials

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

Snug as a Bug

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

Odds and Sods

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

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

June Favourites – Lockdown Edition

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Books

Instead of talking about books that I have read over the past month, I want to highlight books by Black and Asian authors, in the wake of the BLM protests and George Floyd.

  • Queenie – Candice Carty-Williams
  • Such a Fun Age – Kiley Reid
  • Why I Am No Longer Talking to White People About Race – Reni Eddo-Lodge
  • It’s Not About the Burqa – Mariam Khan
  • Does My Head Look Big in This? –  Randa Abdel-Fattah
  • I Am Thunder – Muhammad Khan
  • The Hate U Give – Angie Thomas
  • Clap When You Land – Elizabeth Acevedo
  • The Color Purple – Alice Walker
  • Noughts and Crosses – Malorie Blackman
  • The Girl Who Smiled Beads – Clementine Wamariya

 

Film/TV

I’ve been continuing to take advantage of lockdown by watching more things on Netflix. I loved Dead to Me, a comedy focusing on a widow who is searching for the person responsible for killing her husband in a hit and run. Unbeknown to her, the driver befriends her at a bereavement support group. In a weird way, it explores the funny sides of grief, loss and forgiveness and I can’t wait for series three.

Based on the book by Celeste Ng Little Fires Everywhere, is a recent adaptation for Amazon prime. I was slightly underwhelmed by the book, but I loved the series.

Glow Up has become a little bit of a guilty pleasure over recent weeks. It reminds me of when I was at university and my Tuesday evenings were made with another BBC Three creation, Hair, which followed hairstylists bringing to life crazy and unique hair designs, to be crowned the best hair dresser. Glow Up follows a similar theme but with makeup artists undertaking various tasks and elimination rounds. I didn’t want to like this, but I’ll hold my hands up, I love it!

 

Spoonie Favourites

I recently discovered B12 super energy patches. I decided to try these as my B12 levels aren’t great and I struggle with absorbing tablets due to my gastroparesis (and I take so many on the daily). It’s hard to tell whether or not they have made a difference, or if it’s just been a placebo effect, but I seem to have more energy and less fatigue so it’s a winner for me.

Odds and Sods

Okay so it’s not really a secret that I love the Body Shop, so whenever they realise a new range, I’m normally pretty happy with it. Their latest range of cooling cucumber and zesty lemon has not disappointed. The cucumber body yogurt is brilliant if you are a little bit sunburnt and the lemon is a lovely scent without being over powering.

I recently decided to have a moment of extravagance and purchased the most expensive skin care item that I have ever bought. Said item is Charlotte Tilbury’s Magic Eye Rescue. At £42 for a 15ml pot, it is a lot of money and whilst I really love it, I don’t know if I would buy it again because I cannot justify the price. My eyes seem slightly less puffy and the skin feels smoother but my black bags haven’t magically disappeared which was what I was hoping for!

My final favourite for this month is a bit of a weird one. As many of you will know, May is Ehlers-Danlos Syndrome awareness month and out of coincidence, Matalan have been selling a cute little zebra cushion. Zebras are the EDS mascot so it was meant to be! At the time of writing, it is out of stock, but they do have other zebra-ish stuff, so it’s worth a look.

 

 

 

How I Survived Lockdown

c5912582950c0186a1fc30b74387836cI found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.

Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain. 

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That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational. 

That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try. 

So how did I survive lockdown without relapsing and becoming very unwell?

Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad. 

On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere. 

Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.

Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.

As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.

Dear 18 Year Old Self

Dear Laura,

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

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

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

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

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

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

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

Make memories. Take photos.

Stand up for yourself.

Risk it.

Find and enjoy whatever it is that makes you happy.

Respect yourself and respect others.

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

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

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

You’ve got this,

Laura x

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Emily McDowell

 

 

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.

Lockdown and Mental Health

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Staying indoors has become the norm in the UK, with the country adapting to life in lockdown due to the coronavirus outbreak. The government imposed the lockdown on the evening of Monday 23th March, meaning that we couldn’t leave our houses, except for permitted times such as one outing for daily exercise and essential travel, like going to work if you’re a key worker and going to medical appointments. The way of life in the UK changed very quickly, we couldn’t (and still can’t, at the time of writing this) visit the houses of friends or family, use leisure facilities, visit attractions, gather in large groups spend time outdoors, unless it was for exercise.

Whilst lockdown in the UK hasn’t been as strict as in other countries, it has been completely different to life as we usually know it. As someone who thrives on routine and structure, suddenly not being able to work despite being a key worker, see my friends and extended family or use a leisure centre was incredibly difficult and I know that I’m not alone in feeling like that. I started isolating before it was enforced, due to underlying health conditions and I am now on week ten of isolation/lockdown and whilst it was hard towards the beginning, I am getting used to this being my normal. Sometimes it feels like a bit of a slap in the face, after spending over two years out of work and effectively very isolated because of my health, to now being forced into isolation again, when my physical health is pretty good and I was back in a working environment.

We are now at a point where lockdown restrictions are easing but it is going to take a long time before we are back to normal. Social distancing is set to last months and restrictions could be put back in place if cases start to peak again.

So how am I staying sane?

I didn’t cause COVID-19 and I can’t take it away. As much as I joke about my frustration about it being caused by someone eating an undercooked bat, there is so much more to it being a global pandemic than that and it’s can’t be simplified. I like to be able to control every single aspect of my life and going through lockdown has taught me that sometimes, I can’t be in control and that I need to just go with the flow. I don’t know when I’ll be able to go back to work, I don’t know when medical appointments will resume and return to normality, I don’t know when I will next be able to hug my friends, but everyone is in the same position. I could make myself unwell, stressing over things that I can’t change, or I can accept it and deal with things as they come along. No one can easily fix the situation we are in, sure people can stay home, wash their hands, social distance, use common sense and not go round licking lamp posts but that isn’t going to change things over night. Life will be very different for everyone as a result of COVID-19 and we will need to adjust to that new normal.

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My support system changed rapidly as infection rates spiked. I still have therapy but it’s over Skype and I still speak to my GP but it’s on the phone. As lonely as isolation can be, I know that the support is still there, just in a different format. I’m not having any physio which is hard and I’m not seeing my support worker, as the service she is attached to has temporarily closed. I’m not going to lie, some days are hell: I get angry and I’m probably not a very nice person to be around. Some times I am an anxious mess. Other times, I plod along, doing what I can to make the days easier and taking little steps to keep my brain occupied. Asking for help is not selfish, it is normal to be finding life hard to deal with right now, so we need to show ourselves a little kindness and compassion. And if someone is in a bad mood and is more snappy than usual, or cries over something stupid, don’t take it personally. Give them a virtual hug and remind them that they’re not alone.

One of the biggest things that I’ve come to realise is that I need to be realistic. Like I said above, some days I feel like I can take on the world, other days, I would happily stay in bed and tell everyone (but mainly BoJo) to fuck off. Reading has been the one thing that I’ve been able to fall back on during lockdown, I can happily spend day after day reading, but I accept that shutting myself away in a fictional world isn’t always what is best for me. Or my eyes. That said, I do have days when I’m not in the mood to read and I’ll be honest, initially, I would beat myself up for that, as though reading a book in a day was the marker of success. Trying to stick to some form of routine has been hard, but as much as possible, I make sure I’m up at the same time every day, I do some exercise, read, talk to friends, do some of the endless adult or medical admin and go to bed at a sensible time. I keep my room as just somewhere to sleep and make sure I spend daytimes in other rooms of the house, or the garden, to try and vary my environment as much as possible.

I’m not saying for one moment that I have completely got this whole lockdown thing sorted. Ask me tomorrow and I’ll probably be fed up because I want to go swimming and because I can’t see my friends, but actually, I’m doing okay. This isn’t forever.

Mental Health Awareness Week

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

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

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

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

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

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

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

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

May Favourites – Lockdown Edition

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

 

Books

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

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

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

Films/TV

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

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

Spoonie Favourites

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

 

Lockdown Favourites

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

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

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

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

 

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

 

April Favourites

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A slightly delayed monthly favourites blog post for April, if you’ve read my recent post about depression, you’ll know what’s been happening in my life and where I’ve been. Anyway, that aside, April has been and gone and it feels like 2019 is flying by, or is that just me?

Over to what I’ve loved in April.

Books

My standout book from April has got to be Internment by Samira Ahmed. I’ve been telling anyone who will listen to me to read this book. Set in a near future United States of America, seventeen year old Layla is forced into an internment camp for Muslim-Americans along with her parents. Layla begins a journey to fight for freedom, leading a revolution against the internment camp’s Director and his guards. This book is chilling and powerful in equal measures, mostly because the plot could become a very real prospect if social divisions escalate. The real terror of Internment is how close it is to the present-day United States, with the narrative making it clear how few additional nudges are needed. In addition, there is a deep-running theme about complicity and about how not standing up to something can be the same as letting it happen. This is not only how non-Muslim people either allowed or actively voted for the laws and internment camp seen in the novel, but also how people can turn on those who rebel.

Another bookish favourite from April is My Sister, The Serial Killer by Oyinkan Braithwaite. The title makes the book pretty self-explanatory. Korede’s dinner is interrupted one night by a distress call from her sister, Ayoola, she knows what’s expected of her: bleach, rubber gloves, nerves of steel and a strong stomach. This’ll be the third boyfriend Ayoola’s dispatched in “self-defence” and the third mess that her lethal little sibling has left Korede to clear away. She should probably go to the police for the good of the menfolk of Nigeria, but she loves her sister and, as they say, family always comes first. This book was addictive, leaving the reader with the question of who is more dangerous? A femme fatale murderess or the quiet, plain woman who cleans up her messes? I never knew what was going to happen and I love that in a book. Highly recommend, although the Nigerian language intertwined throughout the book got a little confusing at times.

Me Mam. Me Dad. Me. by Malcolm Duffy is a humorous and heartbreaking debut novel with the fresh, funny, honest voice of a 14-year-old Geordie lad recounting the trials and tribulations of family life and finding first love. The literacy ward nominations alone for this book speak volumes: Waterstone’s Children’s Prize 2019 Shortlisted, Sheffield Award 2019 Shortlisted and Carnegie Medal 2019 Nominated to name a few. Danny’s mam has a new boyfriend. Initially, all is good – Callum seems nice enough, and Danny can’t deny he’s got a cool set up; big house, fast car, massive TV, and Mam seems to really like him. However, cracks begin to show in Danny and his man’s new life and they cannot be easily repaired. As Danny’s life spirals out of control, Danny does the one thing that he can think of and find his dad. Malcolm Duffy has done an amazing job with his book which will appeal to so many readers on so many different levels.

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Films/TV

Having spent the majority of my time at home (in pyjamas) you would think that I have loads of film and TV recommendations. However, I am a creature of habit and will happily rewatch Happy Valley, Line of Duty and Silent Witness, to the point that I know the plots of by heart. That said, I finally finished watching Broadchurch, which I started watching last year but then never finished. Honestly, by the time I got half way through series three, I was a little bored but it still provided plenty twists and turns that I wasn’t able to predict.

I also sat down and finally watched The Hate U Give, based on the book by Angie Thomas, of the same name. I loved the book more than I can put into words, I very rarely cry at books or films, but both the book and film has me crying in sadness and anger at the unjustness of the situation being played out. Sixteen-year-old Starr lives in two worlds: the poor neighbourhood where she was born and raised and her posh high school in the suburbs. The uneasy balance between them is shattered when Starr is the only witness to the fatal shooting of her unarmed best friend, Khalil, by a police officer. Now what Starr says could destroy her community. It could also get her killed. Inspired by the Black Lives Matter movement, this is a powerful and gripping film about one girl’s struggle of justice and equality.

After a lot of deliberation, I watched The Disappearance of Madeleine McCann, after a number of people recommended it to me. I’m not sure how I feel after watching it, it certainly showed various things in a different light and it gave a balanced account of what happened. That said, it didn’t offer any new facts or insights. Unsurprisingly, The McCann family refused to take part in the series and asked those around them not to either, which leaves me feeling that the documentary itself wasn’t a necessity, more recapping of an awful situation that doesn’t have an end.

Spoonie Favourites

I’ve been really struggling with restless legs/arms/body and muscle spasms, due to some of the medication I’m currently taking. I was given a couple of suggestions of things to try, aside from the midnight baths and diazepam which I had been relying on (not an ideal combination…I don’t advise it!), including a weighted blanket and various prescribed medications. However the suggestion that came up the most was magnesium, specifically magnesium oil spray, which you spray on the soles of your feet. It hasn’t completely cured the spasms but it has made a difference.

What did you love over April, I love hearing your recommendations!