Easter Update

LisaLifestyle

Six hot cross buns made for Easter

Sp how’s it going, world? It’s been super easy to shelve blogging lately, but a four day weekend for Easter gives me absolutely no excuse to not sit down and catch up. Most of my days off this year so far have been for hospital visits and check ups, so I am loving that I can spend a little bit of time with my boyfriend and do things that are a lot more fun than sitting in waiting rooms or commuting to the office! To celebrate Good Friday I made my first ever hot cross buns from scratch, and they turned out pretty well despite me realising all too late that I didn’t have a piping bag and having to fashion an emergency piping bag out of greaseproof paper. Didn’t quite work out, so they’re more hot line buns than hot cross buns.

We’ve had some truly beautiful days of sunshine so I’ve done a lot of exploring around my town, getting lost (sometimes quite literally). We discovered an amazing artisan bakery and coffee shop down a country lane called Bakergirl and managed to find a table despite there being cars queuing to get into the car park at 10am! Bakergirl is a bakehouse that offers fresh bread, pastries and coffee in a beautiful brick farmhouse setting. Jon had a very impressive almond pastry, but I had to go for a classic cinnamon bun with my coffee and just look at it – it’s a thing of beauty. Sometimes when you’re in a coffee shop the pastries don’t take that much better from something you’d bought from a supermarket, but this was the cinnamon bun to end all cinnamon buns and I still think about how good the icing was days after. It’s certainly a treat if you’re in the Oxford area, but you’ll definitely have to be strategic about when you go because they’re only going to be even more in demand as time goes by.

Cinnamon bun with white icing on a wooden table

April also marks one year since I’ve been at my new job, although I do suppose I can’t really refer to it as ‘new’ anymore. This time last year I’d packed up my desk at my job in Oxford, decided to take on London and see what it had to offer me. This weekend last year I was in Edinburgh, the perfect place to escape and spend the longest time I’d been unemployed since I was fresh out of university. This weekend doesn’t have quite as many adventures in store for me, but instead it is giving me some time to reflect on how grateful I am that I have a job to go to every day and how I am so much happier in myself than I was this time last year. It’s very easy to get stuck doing things and feel like your situation is never going to change, and sometimes it’s not easy to get out of those circumstances, but I am really appreciating lately how much can change can happen when you change just one little thing at a time. There’s been plenty of struggles in the past year, but for now I’m in a really good place and really that’s what this blog is all about for me.

I plan on spending the weekend relaxing and indulging in hot cross buns and Easter chocolate. I hope you have a wonderful Easter weekend!

Five favourites | March

LisaBooks

acHow on earth has March raced by so fast? It seems like I’ve managed to blink and miss this one but I’ve just about managed to sneak in yet another favourites. To recap, each month I’m using my ‘Five Favourites’ to share a book, a film, a TV show, a song/album and a random thing that I’ve loved. So let’s get started!

Favourite book

The Names They Gave Us by Emery Lord

Emery Lord gave us her debut YA novel When We Collided last year, which  was a very deftly told story of loss and mental illness that I raced through and enjoyed a lot, so I was very excited to discover that she’s got a new book out this year – The Names They Gave Us. Tackling similarly tough topics, this one centers around Lucy whose steadfast belief in God is called into question when her mum is diagnosed with cancer, and it sensitively explores the struggles that a lot of people come to face when the beliefs that define who they are are challenged. I wasn’t really sure what to expect with this as I thought the religious themes might be a bit excluding to me, but I found Lucy a deeply empathetic main character and the story is charming and sad. I think fans of When We Collided won’t be disappointed, and I know it’s ubiquitous now but it would be one to look out for if you’re a fan of The Fault in Our Stars. Smart, genuine female protagonists with depth and sass – we need as many of those in literature as we can get.

Favourite film

Waking Sleeping Beauty

I’d heard about this film after it was discussed in passing on the School of Movies podcast (also excellent), and I was curious to check it out for myself. Waking Sleeping Beauty is a documentary about the renaissance of Disney animation, and contains interviews with key figures who worked at Disney during the production of The Little Mermaid, The Lion King etc. It’s clear there was a lot of internal power struggles and conflict between the creatives and businessmen, which was interesting to learn more about, but more than anything else the documentary just reaffirmed to me how astoundingly gifted the animators on these productions are, and the passion and dedication that must go into the production of every single film. If you like Disney movies, or even just animation in general, I’d say this is one to look into to give some greater context and a deeper appreciation of such a wonderful art form. No minions allowed.

Favourite TV showCatastrophe

How I’d missed Catastrophe when it first launched on Channel 4 a couple of years ago I don’t know, because I love Rob Delaney’s stand up. When I found out he was in a sitcom it made my day, and Catastrophe lives up to everything I had hoped from it. Catastrophe follows Sharon and Rob, who get together after Sharon falls pregnant following a business trip fling, and it shows the growth and development of their relationship as Rob relocates from the States to the UK to be with Sharon and look after their baby. The writing is genuinely excellent, possibly some of the best sitcom writing I’ve ever seen, and it’s such a wonderful combination of wry humour and heart that I identify with constantly despite never experiencing their situation. It’s now up there as one of my all-time favourite sitcoms. And I still love Rob Delaney. If  you want to catch up with Catastrophe it’s on All 4 at the moment and I think also on Amazon Prime – go do that, do it now!

Favourite song or album

Lower Than Atlantis – Could Be Worse

Sometimes you just need a track that helps  you keep all the little annoying things in life in perspective – I have more than one Spotify playlist dedicated just to cheering myself up. Sometimes in life it is very hard to be appreciative and mindful, but 3 minutes or so of being reminded can’t hurt!  I’d question the logic of some of the lyrics if I thought about them too hard, but it’s a nice, positive song. And who doesn’t need more of those?

Favourite random

My yellow coat

I’m not much of a fashion blogger (I’ve only just thrown away some T-shirts that I’ve had since about 2005), but I fell in love with this yellow coat when I was in Sainsburys of all places with Jon one weekend and had to have it. I didn’t think it would suit me at all, but when I tried it on I realised I didn’t actually care whether it did or it didn’t – it’s my own source of sunshine on a grey day when I’m commuting to work. I’ve seen a couple of similar ones at varying prices, but my one is this one here and it was under  £30, which I thought for a coat was pretty impressive!

And that’s it for this month! Next month we’ll definitely be into Spring and I am keeping my eyes open for any great Summer reads. What are you reading lately and have you  started building your Summer reading list? I’d love to hear  what you’re loving at the moment.

Lisa

Ten tips for successful cooking with a visual impairment (and for the fully sighted too!)

LisaLifestyle

One of the things I loved doing before I experienced my sight loss a few years ago was cooking. I learnt a lot of recipes from my mum growing up and once I’d moved out of my parents’ house I had a lot of fun trying out new recipes or returning to the meals I’d had from my childhood and putting my own spin on them. I collected cookbooks from charity shops and the bookshop I worked in, and I loved flipping through them and displaying them in my kitchen. Once I lost my sight, I spoke to a social worker who was helping me adjust and she basically told me that I should throw my cookbooks out because I wouldn’t be using those anymore and all I’d ever use is the microwave. While I was in the early days of learning how to navigate with my new limited vision, I was pretty annoyed! I believe very passionately that if you have the right support and adaptations, a visually impaired person should be able to do anything a fully sighted person can do. So, I ignored this woman completely, and with a couple of hacks I gathered from the internet and trial and error, I kept cooking. I’m not going to pretend that some things I need help from my boyfriend or my family, but I still cook the same recipes, and they taste just as good as when I did them before!

Before I share my tips with you, I’m sticking big ol’ health and safety warning sticker all over this post though in that these tips are just ways that I’ve adapted the way I cook since my visual impairment and if you don’t feel comfortable or safe doing these things please don’t! I can’t afford any lawsuits if you burn yourself or slice anything unintended. Cooking’s meant to be fun! Here we go…

1 Keep your kitchen organised
Starting with an obvious one, but when you know exactly which utensils live in which drawer, it really does make life a lot easier. This is true just generally and doesn’t really have anything to do with eyesight, but why set yourself up and struggle finding things?

2 Use bright kitchen utensils to provide contrast
I treated myself to a new set of knives and a new set of chopping boards once I lost my sight. With bright coloured handles and blades, even if I can’t tell you which colour each knife is, I can tell them apart and most importantly keep the blades away from my fingers! The coloured chopping boards also help provide contrast when you’re slicing things and make it easier to see where needs cleaning.

3 Use dark coloured paper or a high contrast colour behind a clear jug to measure liquids
Even with full eyesight sometimes I struggled to see the level of water in a measuring jug, or stop myself from overfilling a glass, but it turned into a bit of a nightmare after my sight loss unless I realised this easy trick if you still have some vision. If you’re pouring water into a measuring jug, get a black piece of paper (or a bright coloured chopping board) and hold it behind the glass to up the contrast and help you tell when you need to stop. It took me longer than it should to work that one out. I also have a water level indicator that I sometimes use, which you hook over a glass and it’ll vibrate once the water reaches its level. I don’t use it that often though, because ironically I leave the device lying around my kitchen and then it’s quite hard to find!

4 Use measuring cups and spoons for flour, sugar and spices

I used to use these sometimes before, but with full eyesight it was often a lot easier to judge how much flour or paprika to put into a dish by eye. Sometimes I will still wing it, but especially when you don’t want to end up chucking half a packet of chilli powder into your dinner, it’s sometimes better to get yourself a dedicated set of measuring spoons and learn by touch which one you need. A lot of them will have the measurement etched into each spoon so you can feel for the specific measurement.

5 Stick puffy stickers on your most used hob, microwave or oven notches
Okay this one I have to give full credi to my social worker for, because I don’t do this, but it may be useful to you. If you know that most food you cook needs a medium heat, or is at 200°c, get a pack of 3D puffy stickers (the RNIB sells them, or you can get some cute ones from Paperchase or similar). Stick them near the notch you need, so you can feel where the dial needs to be turned to. Remember to stick one near the ‘off’ position as well, because leaving hob rings on can only lead to trouble!

6 Invest in a halogen oven and/or a microwave
Depending on the sort of cooking you want to do, getting a cooker like a halogen or microwave that is a sealed unit you can control electronically and don’t have to worry about whether or not it’s the correct temperature could be invaluable. I still use my electric oven and hob and I don’t tend to cook a lot of meals in a microwave, but it is really useful for cooking things like rice, which you can steam in a microwave in about 8 minutes without having to worry about water overboiling. A halogen oven sits on your worktop in a similar way, but you can use it to cook almost anything in, including bread and roasts. I think both of these devices are potentially a lot safer than a traditional oven for cooking dinners once you learn how they work.

7 Use Be My Eyes app on your phone and let a volunteer help
There is a really cool app called Be My Eyes that allows people with visual impairment to connect with sighted volunteers using an iPhone camera, and you can use this to ask sometime to help tell you what expiration dates are on things, or if the utensil you’re looking for is in the drawer or on the washing up rack. Hopefully they’ll bring this out for Android users soon as at the moment it’s iPhone only but it’s worth checking out!

8 Use an image to speech app or scan your recipes in
If you have a lot of paper recipes and cookbooks you can try and find their equivalents on Pinterest or recipe websites, but if you have a very specific recipe you want to use and nothing else will do, you can always try downloading an image to speech app onto your phone, take a picture of the recipe and use the app to convert it into text that can be read by VoiceOver or another screen reading device. It’s a bit fiddly, but sometimes needs must.
9 Swap complicated recipes for simple foods enhanced with spices and herbs
I really think if you like cooking, or even just like food generally, investing in different kinds of spices really is the best thing you can do to give you cooking options. You can make even a plain chicken breast completely different by using Cajun spices or by giving it a herby crust, and they can be used in lots of dishes rather than for just one thing.
10 Cook with your loved ones
Cooking is so much more enjoyable when you’re cooking for someone you love, but it’s also a lot of fun to cook together either with your partner or with a grouo of friends for a dinner party. You might not be able to do this every day, but if you’ve got some new recipes you want to try, or you feel like baking some cupcakes, why not invite your friends around to help out? You can use them mercilessly for labour help, and they get paid in food. It’s a win-win scenario.

So those are my ideas for how to keep cooking with a visual impairment. I appreciate that no two sight loss stories are the same, so some of these tips may not be as helpful to you as they might be for me, but the overall message here is that you shouldn’t have to give up something you enjoy because of your disability, and sometimes when it seems impossible really the first step to making it work is trying something new. You can follow me on Instagram where I often share my latest cooking adventures, I’d love to hear what you’ve been cooking recently!

The Good Wife and Norse Mythology

Five favourites | February

LisaFavourites

Each month I’m using my ‘Five Favourites’ to share a book, a film, a TV show, a song/album and a random thing that I’ve loved. This month I’ve spent a bit of time in hospital having a leg operation (all sorted now thankfully!) but it has meant that I’ve had more time for marathoning TV shows and powering through my TBR. I’ve had a lot of favourites this month, which has made narrowing it down to just five very tricky, but here we go…

Favourite book

Norse Mythology by Neil Gaiman

When reality gets hard, drifting back into myth and legend always manages to give me some perspective. These Nordic tales, expertly told by Neil Gaiman, are endearing, funny and help prepare you for the end of the world. What more could you really ask from a book? I raced through this one in a single sitting, but you could just as easily dip in and out and pick one myth at a time. I’d recommend them all.

Favourite film

Whiplash (2014)

It’s taken me a while to get round to seeing this film, but when it appeared on Netflix I finally made time and was blown away. It tells the story of Andrew, a jazz student whose aspiration to become the greatest turns into an obsession that is fostered and manipulated by his abusive studio band conductor. It’s hard to describe what makes it so compelling as none of the characters are particularly likable, but it’s beautifully shot and engrossing start to finish.

Favourite TV showThe Good Wife

While I was in hospital I went back to marathoning a series that has crept its way into being one of my favourites. When I started I didn’t realise that I had seven seasons to catch up on so I had assumed I’d drift away, but it is just such a smart show and so easy to just stick on and then wonder where your day has gone. In the show the main character, Alicia Florrick, is a lawyer and wife of a disgraced former State Attorney and we follow her journey from standing in the background by his side to taking on legal cases and growing in her own career. It can feel a little Single Female Laywer at times, but the cases are smart and there’s plenty of characters to root for or hate.

Favourite song or album

Vukovi – Weirdo

My most recent favourite is a band that I discovered while flicking through music channels on the TV (yes, I’m old enough that it is a thing I occasionally still do). This band were on Kerrang in a music video for a different song, but when I checked them out on Spotify I was most drawn to their most recent single Weirdo. They’re a four-piece, female fronted alternative band from Glasgow and the songs are catchy. I think they have their debut album coming out later in 2017, so it’s certainly one I’ll be looking out for.

Favourite random

 Ava the guide dog

Back in 2015 when I was feeling very lost about my visual impairment and what to do, I decided to sponsor a guide dog. The dog I chose was named Ava (you can see her here) and I’ve been following her journey through puppy walking and school, to training and placement. She’s a golden labradoodle, which makes her hypoallergenic, and she’s such a cutie. I’m including her this month as a favourite because she’s just graduated training and she’s now been placed with her forever person and is helping guide the lady around London. I just think she’s amazing, and Guide Dogs for the Blind do such great work helping visually impaired people maintain their independence.

So that’s it for February, fingers crossed I’ll be back with another eclectic mix of favourites in March. Share your favourites in the comments below, or let me know on social media what you’ve been loving lately!

 

Lisa

2017

Looking back on 2016

LisaLifestyle

It’s been so tempting to write this year off as the world news  Instead, I’m going to see what I can salvage as the highlights of my 2016. These things have made me happiest and inspired to me to keep going.

★ My boyfriend and I are now living together

This one has to win as my biggest highlight hands down. After 6 years mostly spent in a long-distance relationship where my boyfriend would drive several hours down from Lincolnshire or I had to take several trains into and out of London in order to see each other, my boyfriend got a new job in Oxfordshire and was finally able to move in with me. Long-term long-distance relationships are really hard to sustain and while I don’t regret doing it at the time, I am so glad that he’s around now and hopefully for good.

★ My new job in London 

After four years working for an academic publisher in Oxford, I finally broke out and got a job working for one of my dream publishers in London. It’s been a year of challenges and lengthy commutes, but I’ve had so much fun learning new things again and getting to help their digital publishing grow and thrive in my little capacity. It was also a great opportunity because it’s proven to myself that even with my visual impairment, I can still work and travel to work without it having to make every day a struggle and be my defining characteristic. I feel very lucky, every day, to be able to do that still.

★ Travelling to Barcelona and Edinburgh

Barcelona was a trip of firsts, my first visit to the city, first time flying for business rather than leisure and my first time flying solo. It presented a great many challenges, but I faced them all head in and came out stronger in myself for it.

Edinburgh was a dream in comparison, a lovely, straightforward, short getaway with my boyfriend that was just what I needed to relax and recharge before changing jobs.

★ Contributing to medical projects close to my heart

Earlier in the year I was working with clinical experts to help produce a guideline for the diagnosis and treatment of the catastrophic event that caused my sight loss. It has probably been the most serious and significant thing I’ve ever had the privilege of contributing to, and to think it might help even  one person not go through what I did will make it all worthwhile for me.

★ Being immersed in stage and screen

This year was a year for fantastic stage productions, and, by coincidence, a lot of musicals for me. This was one area where although my visual impairment did impact on my experiences negatively, I was able to make the most of the benefits available and get access tickets to some amazing shows. I’m waiting like a hawk for Hamilton tickets in 2017, but in the meantime I enjoyed seeing the fantastic musical adaptation of Groundhog Day, with music and lyrics by the inimitable Tim Minchin, In The Heights twice with a number of cast changes between the two performances,  Harry Potter and the Cursed Child Pts I and II and the absolutely marvelous RSC Don Quixote. All were phenomenal and I felt very lucky to witness them. I’m hoping 2017 will be the year of Hamilton, but would love to fit more theatre in wherever I can. Comedy was also well represented by sharing my birthday with Bill Bailey in London and discovering we have the same birthday, spending and Valentine’s Day at the Glee club in Oxford with the musical whimsy of David O’Doherty, and of course my lovely partner.

I also saw some great movies in the cinema, but want to give a particular shout out to Deadpool, a movie that may not have been arthouse levels of deep, but was surprisingly smart and made me laugh a lot. Plus I love Careless Whisper, so I was always going to be sold on this film.

★ Taking a bit more time for creative projects 

I started bullet journaling in September, which meant I had a lot of fun (and stress) setting up my bujo and capturing my to do lists and meal plans in a more organised way. I’ve let it lapse a bit but it’s something I plan on going back to as it did make me feel more organised.

I also joined a creative writing club that was equal parts inspiring and soul destroying as I surrounded myself with passionately committed writers with fascinating projects. It did compel me to resurrect projects of my own and again was great inspiration to be around other writers.

★ Getting back into reading

I had worried that the strain of visual impairment would cause me to drift away from reading and for a while that was true, but a new kindle paperwhite and a commute that is several hours long soon put a stop to that. I may not be getting through the hundreds of books a year that I used to, but I powered through 26 books, eyesight be damned, including every Sarah J Maas novel so far and that’s good enough for me, for now.

 

★ Improving my fitness and strength

I channeled all my energy for the first half of 2016 into improving my physical fitness with Les Mills Body Pump and Body Combat classes 3-4 times a week, and completing a 5K charity Wally Run to raise money for the National Literacy Trust. Sadly due to the lengthy commute and inflexible class timetables I had to sacrifice a lot of the exercise classes once I started working in London, but the increased strength and endurance has helped me throughout the year.

So really I can’t claim 2016 as a bad year for my personal goals, and I’m proud of achieving quite a lot of stuff. Hopefully together we can kick 2017’s ass! Onward and upwards!

 

Lisa

Blind Problems | Keeping things in perspective

LisaBlind People Problems

Sometimes in the months after losing my sight, the things that drove me a bit mad were pretty significant – fears about my health or career, and the fact that I now had to rely on other people so much more for help to do things I used to do without thinking. Day to day, these things lurk in the background, a grey fog of stress that pervades into everything you try to do. But realistically, even in the lowest times, you can’t spend every minute thinking about the enormity of it all. It’s the little things that can make the difference between a manageable day, and the days where you just have to either laugh or cry at how ridiculous things are. These are just a few of the little things, and I choose to focus on them because fighting fog is never satisfying.

Buzzing insects

This is usually more annoying in summertime when the lack of air-conditioning in my flat means I have the windows open a lot.  You’re relaxing on the sofa and then you hear it: BUZZZZZZZ. Is it a fly? A bumblebee? A wasp? Either way, not being able to see it, you have three options: hope it goes back where it came from, spray bug spray absolutely everywhere and hope you don’t wind up getting stung repeatedly by a disgruntled wasp, or accidentally killing an overly friendly bee, or having to accept that you now have a new room-mate who keeps you awake all night and won’t even contribute to the rent.

Is something actually clean?
Clothes, plates, glasses, your own face…
I have lost count of the number of times that I have left the house or almost left the house only to be told that my top has toothpaste on it, or I have lipstick on my teeth, or I’ve done the washing up and someone else has ended up having to re-do it because I’ve missed spots. Don’t get me wrong, I’m very grateful that people bother to point these things out so I don’t end up living in a perpetual mess, but it can also get really infuriating. It’s a catch-22, because you don’t want people doing everything for you, but there are times that you think: “Well if I’m making such a mess of things, why don’t you just do it yourself?”. Not that wouldn’t be equally irritating in an entirely different way.

Nature
It isn’t perpetually raining in England, but sometimes it can feel that way! When I first lost my sight, I received mobility training with both an indicator cane and a long white cane. The long cane is designed to help negotiate walking outside, and it is useful in part for making you aware about changes in surface or gradient, so if you’re going downhill, walking on grass vs pavement, or about to step off a kerb. What I never found it useful for, is puddles. Puddles, especially in winter when they have potential to also be icy, are the most infuriating because whereas most people find puddles annoying but they can see when they’re in their oncoming path and generally walk around them or hop over them. If you can’t see them and walk along only to find that now your socks are now soaked through and your feet are going to be damp for the rest of the day, it can get pretty frustrating.

Not being able to colour match
Having some colour vision is fantastic in comparison to not having any at all, but it does mean that I have bought clothes on numerous occasions thinking that they’re black, only to be told they’re navy, or purple. I’ve ended up with a pretty small colour range of ‘safe’ colours that I know I can wear together and won’t look odd even if they aren’t the exact colour I think they are. And don’t get me started on the whole ‘The Dress ia blue/black thing that was doing the rounds a couple of years ago…

Accidentally blanking people
Okay, I have two options. Unless I’m expecting you, or I know you really well, for the most part I won’t identify you partcularly quickly. If I see you out of context, walking past me in a shop or down a corridor, I will pretty much guaranteed accidentally blank you. This is a combination of having virtually no peripheral vision, so unless you say something to me, I’ll have no reason to turn my head towards you, and if you don’t say anything at all even if you’re right in front of me, there is a good chance I will end up starting a conversation with a random stranger. Perhaps I’m doing life wrong, and I should be talking to strangers more often than not, but in the interest of not confusing innocent bystanders I’m more likely to just walk on by. And you’ll probably think I’m a bitch. Maybe next time, you can say hi?

Not being able to run late for anything… or constantly running late for everything
Going from full vision to limited vision, it took my brain a long time to reconcile the fact that everything I used to do in minutes would suddenly take me quite a bit longer. I never liked being late, but I liked to think I was very pragmatic about my use of time and if I knew that for example putting my makeup on took me 10 minutes, I would leave it until the last 10 minutes. Once I lost my sight, I realized that things like this would take me longer to get right, but for a while I was still trying to cram them into the same amount of time, which just meant I’d end up frustrated, late, and far more chaotic than I needed to be.

Unsurprisingly, there’s a lot more little things that I’ve struggled and learned to cope with, so I’ll probably space these out into future posts. Otherwise this will just turn into one long whine-fest!

 

Lisa

Story time | My APS diagnosis

LisaAntiphospholipid Syndrome

When I was seventeen, I was diagnosed with a medical condition I had never heard of before. I went on a college trip to Cuba in 2007; a once in a lifetime trip. There was an eight-hour flight each way between London and Havana and it was my first ever long-haul flight, although I had flown shorter distances before. I was in a middle seat of an aisle and for the duration I didn’t move around much. I’ve learnt the hard way this is always a really bad idea. I’d felt a bit odd while I was away, but I attributed it to climate changes and jet lag, so I ignored it, but when I got back to England I was feeling rough. It was on a Saturday evening that I was on my laptop and my back started hurting really badly and I ignored it thinking that I’d somehow managed to pull a muscle. (Notice my tendency to ignore things and hope they go away? This is a recurring thing with me. Don’t be like me. I suck.)

After it didn’t go away later and was stopping me sleeping, we rang NHS 111, which is a medical telephone service that you’re advised to use to find out what kind of treatment you need based on your symptoms. After eventually speaking to a doctor over the phone, I was told that it was muscle pain and that it would get better on its own. I couldn’t lie down on my back or shoulders, so I spent the Saturday night sitting on the sofa with my mum watching the QVC shopping channel and Wacky Races cartoons, because I didn’t want to go to A&E on a Saturday night when it’s at its busiest. The next day, wired, I went to a walk-in clinic and the doctor I saw concluded that it was muscle pain, giving me strong painkillers. I took them and fell asleep on the sofa as my back had finally stopped hurting, but soon I woke up with agonising pain in my chest underneath my ribs. At that point, I couldn’t breathe properly or stand up straight and told my parents that I had to go to hospital NOW. We dashed to A&E, where at that point it was really hard to keep from yelling out at the pain. After having some blood tests with weird results, I was kept in overnight. Eventually they told me that I’d had a bilateral pulmonary embolism, which meant absolutely nothing to me. I found out afterwards that it meant I had blood clots in the veins of both my lungs that meant that they were were blocking the blood flow into my lungs. I also found out that if I’d left getting to the hospital later, I probably would’ve died. So, that was a pretty terrifying weekend. I was given the necessary blood-thinning medications to treat the clots, but the doctors were still confused as to why a 17-year-old had rocked up with the same symptoms as an elderly patient.

More unusual blood test results showed that I had antiphospholipid antibodies. As far as my understanding goes, the body has phospholipids, which are part of cell walls, but something unknown triggers the body to think that these phospholipids are foreign and dangerous and so instead it creates antibodies to attack them like it would if you had a virus (hence, anti-phospholipids). If this is untreated it can create problems with the red blood cells (who, understandably, mind being treated as foreign objects in their own body) and it can increase the likelihood that the blood clots unnecessarily. These blood clots can appear in any vein or artery in the body and cause a whole host of problems. These include, but aren’t limited to:

      migraine

 

      memory loss or ‘brain fog’

 

      balance, mobility or vision problems

 

      DVT (Deep Vein Thrombosis)

 

      miscarriage

 

      pulmonary embolism (blood clots in the lungs)

 

    stroke

I then learnt that this condition had a name – Antiphospholipid Syndrome. It’s sometimes known as Hughes Syndrome after Graham Hughes, one of the key doctors who identified the condition back in 1983. It can also be referred to more colloquially as ‘sticky blood syndrome’ or by its initialism, APS (AY-PEE-ESS, not like mobile apps). I prefer to call it APS, so that’s how I’ll refer to it for the rest of this post, and in any posts about the condition that I make here in the future. So, I was told that after six weeks of monitoring and tests, that it was confirmed that I had APS. My first questions I think were the same as most people’s if they were told they had a condition they’d never heard of before.

1) Am I going to die? (I do love the melodrama)
No. Or at least, the condition itself isn’t in itself life-threatening, but if you do have a clotting incident that could be life-threatening. So ehh. Grey area.
2) Is it curable?
Currently, no. It’s a life-long autoimmune condition. More recently there have been people who’ve reported that the antibodies have gone into remission, but there’s no guarentee it wouldn’t come back.
3) Is it treatable?
Yes and no, it’s usually managed with life-long anticoagulation (blood-thinning). For me back in 2007, this was through warfarin tablets and regular blood tests.
4) Is it contagious?
No, APS isn’t contagious and you can’t pass it on to someone else through cuts etc. There’s another grey area with blood transfusions, I don’t think there’s been enough research into that area yet.

At that point I was told that the warfarin tablets I had been taking while I was in hospital I would need to take for the rest of my life, and that to make sure that they were working effectively I would need to go for regular blood tests to monitor the rate my blood clotted and make sure it was in a safe range. There began my lengthy, frustrating relationship with warfarin that I will save for another day.

At that time, I think the most scary and frustrating thing about being diagnosed with APS is that I had never heard of it before, and when I spoke to friends, family or doctors none of them seemed to have heard about it before either. As it’s an invisible illness, no one could tell that I had this condition so it meant that once I was out of hospital there were no immediate signs that would identify me as someone with a chronic condition, so it was difficult for other people to understand when I tried to talk about it. There are a handful of groups doing great work to raise awareness of APS, but the majority of people I speak to in my daily life have never heard of it. I’m hoping in a really small way, this blog can help towards that.

Disclaimer: I am not and have never been a doctor. At best, I have a Science GCSE that I passed begrudgingly back in 2006. I have however lived with this condition for 9+ years.

Lisa

A taste of what it’s like in Washington Heights

LisaLifestyle

I took far too long to see In The Heights. When the Tony award-winning first musical from Lin Manuel Miranda came to Kings Cross I was very much in the midst of my Hamilton obsession, and while I knew about Lin’s earlier work, I wasn’t certain if I wanted to make the journey across London to Kings Cross in order to see it. I have no excuse, really. But, feeling motivated by the passionate and addictive Latin infused cast recording and the fact that.i was able to get excellent seats at a very affordable price, I changed my mind. And I didn’t regret it for a second – if anything I’m kicking myself that I didn’t go sooner.

In The Heights tells the stories of a group of immigrants living in their local barrio of Washington Heights, New York, following their aspirations and daily struggles through a combination of Latin rhythm and hip-hop beats. Originally I had wondered how a musical so keenly focused on one particular district in New York would translate to a small theatre in London, but my concerns were unfounded. One of the strongest thing about this musical is that despite it being incredibly specific about the locations it refers to, ultimately it’s a musical about home and belonging, the struggles everyone faces to achieve their dreams when you aren’t born into an affluent background, and the sense that the world is constantly changing around you to the point where things you recognise and take for granted can disappear.

Each character’s narrative feels genuine and compelling, in particular I found Nina’s struggle to leave Washington Heights and pay her way through college, and the sense of displacement she feels at being away from her home and the people she knows, very identifiable. I also love Daniella and the girls who work at her salon, who never failed to provide some fun.

The staging belies how small the theatre is, and given that the actors have only a catwalk of a stage to showcase their very impressive skills I was really impressed. The spirit that filled the room was far greater than the square footage allowed, bringing colour and rhythm to Kings Cross. When the actors sing ‘Look at the fireworks!’ you are compelled to look to the ceiling with the near certainty that there will be fireworks cascading. It’s a musical that lifts and carries you through with heart and leaves you with a sense of belonging that is hard to replicate anywhere else.

I believe the show is running until January, I’m definitely going to see it again and if you have the opportunity, you should too. Alabanza!

Lisa

Harry Potter, after all this time?

LisaLifestyle

Back in 2015, when the first batch of tickets went on sale for the much hyped two-part stage production of Harry Potter and the Cursed Child, I joined the booking queue largely ambivalent to the whole thing. For starters, I still thought it should be The Cursèd Child, and I was almost certain that splitting a single story play across two performances and expecting people to pay twice just to get the whole storyline was reaching a new level of extortion. But I joined the queue with morbid curiosity, and when I reached the front despite starting as #89422 the sheer surprise compelled me to buy tickets to both parts for my boyfriend and myself.

So now October 2016 has rolled around and I’ve just got back from reaping the fruits of my labour. And I have to concede, it was a very good show. Or shows, depending on how you view it. Still not entirely sure it justified the ticket price, and still think that expecting patrons to troop out for a couple of hours and then come back between acts is a little ridiculous, but for that you get the rare ppportunity to spend nearly a whole day in the heart of the theatre, which is a beautiful thing.

The quality of acting was, as it would have to be given the hype, supremely high. I particularly loved Noma Dumezweni’s Hermione who embodied the best and worst of Hermione’s character in her fierce intelligence and overbearing stubbornness. Anthony Boyle’s Scorpius Malfoy was also a particularly fun character, played empathetically and getting laughs in all the right places.

But really it was the staging that gets the highest praise, with all the wizardry and wonder of a blockbuster film with the additional fascinating element of trying to figure out how the producers created the illusions before our eyes. In particular the scenes on the Hogwarts Express and the darker scenes in Act Two were mesmerizing.

Both Jon and I had read the Cursed Child script beforehand, and agreed that while we both enjoyed it, it did read like fan fiction (not a criticism of fan fiction itself, more here felt the desire to revisit old characters and locations was at the expense of a strong narrative). I also think both in print and on stage there are elements of queer-baiting that I don’t appreciate from Rowling and co. Despite its limitations though, it definitely makes for a great day out as long as you don’t try and over-analyse it too much.

A bit of a side note also that made me a little sad was how extortionately priced everything in the souvenir stand was, including pens sold for £10+. I’m not naive to West End London prices, I heard so many sad young voices being placated by parents who couldn’t justify the cost of buying their child a keychain that might cost more than the bus ride home. It was a real shame.

I do however fully support and encourage the Friday Five scheme that’s allowing some people to get tickets at much lower prices, as anything that allows more people access to the theatre who could otherwise not afford it is a really wonderful thing. I’m hoping that the similar #Ham4Ham scheme will be brought over when tickets for the West End production of Hamilton are announced. But that’s a different post for a different day.

Lisa

Visual impairment and food

LisaBlind People Problems

It goes without saying that living with visual impairment isn’t easy. Some of the problems that come up are obvious and vary greatly depending on how severe the sigh loss is – navigating the outside world unaided, cooking, reading, watching television, using computers. There’s a lot of adaptive technology out there (way more than I ever realised before losing my sight), and with the help of friends, family and supportive charities such as Guide Dogs for the Blind or RNIB people with visual impairment are able to be more than their disability. There are however much littler things that as I fully sighted person I’d never thought about, but since becoming visually impaired have become unexpectedly annoying!

In no particular order, I’m going to do a series of posts on my #blindpeopleproblems. I’m in no way trying to undermine the much larger struggles that other people with a disability face all the time, these  are just things that get on my nerves from time to time. These annoying things aren’t exclusive to people with visual impairment, I’ve just noticed them more since then. First one up this time is food.

Cooking and eating can each present their own difficulties when you are visually impaired, but I’ve actually found it’s the other things surrounding this that have been more of a problem. Going to the supermarket can be incredibly stressful, especially without anyone with you, because on top of it taking ages to find the things you’re actually looking for, you also have to dodge a slalom of other people, pushchairs, toddlers and trolleys (annoying to anyone, yet more hard work when you can’t see them!) People tend to into a fugue state when they’re in supermarkets, usually wandering through aisles or browsing stuff without really paying attention, and it just makes them so much easier to walk into or trip around. Or bash with a basket. Sorry, people!

The other thing that catches me out is expiry dates and sometimes edibility of food. I know some things go out of date a lot faster than others, but not being able to clearly see what day that something goes out of date has meant that so many times I’ve had to throw food away that I’ve bought and when I’ve gone to cook it, it’s not safe to cook any more because it’s expired. One of the worst ones is bread – I live on my own, I find it near impossible to get through an entire loaf of bread before the expiry date, and I can’t tell a lot of the time if it’s gone mouldy even though I’ve only bought it a couple of days ago! I’ve had to stop buying bread unless I know that I’m staying with people who’ll eat it, or at least who can tell me whether it’s safe for me to eat. I have genuinely had to take pictures of a pack of bread rolls and send it to my boyfriend to check whether or not they were safe, because I wasn’t sure and it was the only way I could think of to find out without risking it!

The last food one is probably as much to do with my own stupidity than my eyesight, but not being able to notice things is definitely a blind person problem. I don’t have a fancy fridge that beeps if the door isn’t shut properly, and on numerous occasions I have shut my fridge door, gone to bed and when I’ve gotten up the next day I’ve discovered that my fridge door hasn’t shut properly and the entire contents of the fridge are warm. Worst.

If you have any recommendations or workarounds you can suggest, or want to share stories of what you do instead, please leave a comment or send me a message, especially if you can save me from doing things in particularly dumb ways!

Lisa