Tuesday 6 September 2016

Chronic Illness and the Seasons

For me, Autumn is the best season to be chronically ill. In theory, summer should be best, because it is (again, in theory) hot and warmth is good for my joints, but the problem with summer is the clothing. I pretty much have to wear lace-up boots that cover my ankle and have a sturdy sole, and while this is fine for me apart from on very hot days, it does not fit in with other people's perceptions of what my summer footwear should consist of. This past summer, I did finally find the perfect pair of sandals from Dr Martens and while I love them, I couldn't wear them all the time because they just aren't supportive enough.

It isn't just the footwear that causes a problem in summer though, it's the rest of my clothes. I have to keep my body warm, because cold limbs = pain, stiff, locked joints and general badness. And unfortunately, I have a body that is tough to keep warm. I can go all the way to about 23 degrees (with minimal exercise) and still be happy in jeans or 200 denier tights. Again, this makes me look a bit weird. It's only on the (very rare) occasions that we have a hot enough day or if I'm away in a hotter country, that I go bare-legged.

My personal favourite season is winter, the antithesis to summer. I can wear all my layers and my boots without standing out, but the weather is often so cold that, no matter how much I like it, it's almost impossible for me to stay warm enough to be comfortable, especially out of the house.

This leaves Spring and Autumn. Spring pretty much has to be dismissed outright because I am NOT a pastel-shades kinda girl. Which brings me to Autumn. All those things able-bodied people romanticise Autumn for are pretty essential for me as a person with Joint Hypermobility Syndrome. Autumn means I can wear my jumpers and my scarves and my big coats and my boots and not only not be out of place, but be bang-on re appropriate seasonal clothing AND warm and comfortable. Autumn means not being quite as cold as in winter. Autumn means russet and forest green and grey and black and all those other colours I like. Autumn means justifiable reasons to stay in (it's cold, it's dark, Bake Off/Strictly/Period Drama du jour is on) which makes me feel better as a person who often has to stay in. Autumn means hot drinks and blankets and stews and soups which are all things that make me feel more comfortable. Autumn means comfort full stop.

And comfort, as a chronically ill person, is one of the end-goals of any scenario. It's rare I'll find myself pain or fatigue free, or sans any kind of symptom or side-effect, but if I'm experiencing these things while comfortable, I can cope much better. I can be better-humoured.

If you're chronically ill, which season is best for you? And if not, what's your favourite season in general?

Tuesday 16 August 2016

Eleven Films To Watch When You Feel Pretty Shit

Something I struggle with when I don't feel well is how to occupy myself. I'm usually too ill to go out or exercise or even read. I don't have the mental energy to watch anything new, and there's only so much Say Yes to the Dress one person can watch. Putting a good, familiar film on can serve a dual purpose: it's something to do, to take your mind off the pain or the fatigue, but also the perfect easy-viewing/entertaining/funny/heart-warming film provides a level of comfort and escapism and good-feeling that's so important when you aren't feeling great. 

Here are my choices of films to watch when you feel pretty shit. 

10 Things I Hate About You
Oh Heath Ledger. It is impossible to watch this film without uttering those words. So loveable and charming, with bonus Joseph Gordon-Levitt and of course, peak Julia Stiles. Humorous and heart-warming. 

The Hunger Games 
It might seem like an odd choice to make you feel better, given it's all about teenagers killing each other. But I find it very watchable, with excellent comedic elements from Woody Harrelson and Elizabeth Banks and damn fine acting from Jennifer Lawrence. 

Pride and Prejudice
A controversial favourite adaptation of this Jane Austen classic, but I love Keira Knightley and Matthew MacFadyen so it is my immediate favourite. I love everything about this film but especially that ballroom scene. I once watched this every day for about 3 months. 

Anything Marvel
Lets face it, pretty much any Marvel film is guaranteed high-entertainment easy-viewing. My personal favourites being Avengers Assemble and Captain America: Winter Soldier.

Pitch Perfect 
It's so funny and so feminist and so totally awesome. All of the actors work so well together which results in a slightly off-beat, totally charming and loveable dynamic. Plus who doesn't love synchronised lady dancing?!

Chalet Girl 
A low budget but utterly charming British film featuring the inimitable Felicity Jones, and Ed Westwick sporting his actual, almost-too-sexy accent. A true underdog story, it's perfect to help you feel better.

The Force Awakens 
It's just a damn good film. The perfect antidote to those prequels, it's joyful and full of loving references to the original films. It has its dark moments but ultimately it's an uplifting, inclusive and entertaining film. How can you not fall in love with Rey, Finn and Poe?!

A modern adaptation of 'Emma' makes this my second Jane Austen choice. Full of lines that have been permanently installed in the annals of pop culture quoting, super feminist and featuring the dreamy Paul Rudd, it's almost guaranteed to bring a smile to your face.

Your Favourite Disney 
I decided not to pick one out, because everyone has their own favourites but whichever yours is, it's a surefire way to leave you feeling better about life. Especially if you use it as an opportunity for a bit of a singalong. One of my personal favourites is Tangled. 

Ocean's Eleven
I love me a heist movie and there are so many charming actors in this it's hard not to enjoy watching it. And it's super easy viewing. 

Howl's Moving Castle
Pure escapism in the form of my favourite Studio Ghibli film. I've always liked the story of quiet Sophie, forced to find herself whilst on a strange journey in a magical castle. Plus there's the hilarious Calcifer and the enigmatic and beautiful Howl, voiced in a odd-but-it-works way by Christian Bale.   

Other excellent choices: Lord of the Rings // The Breakfast Club // The Holiday // Billy Elliot // Legally Blonde // Bring It On // The Devil Wears Prada 

What is your favourite film to watch when you feel shit?

Wednesday 10 August 2016

Healthy Eating and Chronic Illness

When I saw the Rheumatologist last September, one of things he told me I needed to do was improve my nutrition. This was not a shocking thing to hear, nor was it the first time I've heard it. Practically everyone I know has, at one point or many, told me I need to improve my diet. *I* know I need to improve my diet. 

The problem comes when you add chronic illness into the mix. Because chronic illness makes lots of the things you need to do to eat healthily hard. Like chopping fruit and veg, or standing and cooking for longer than 5 minutes, or washing the 5 pans, 6 knives, 2 chopping boards and a sieve that making your meal required. Fortunately for me, I live back at home now and my mum has made a steadfast effort to improve the healthiness of our evening meals. They all contain some form of protein (NGL, it's nearly always chicken. I am somewhat fussy and my brother is the rest of the way fussy and chicken is pretty much the only meat we agree on) and veg and are made fresh and are, thankfully, well delicious. She has been diligently testing out new recipes and adding extra veg where extra veg can be added (all so my brother can pick it back out of his portion) and I appreciate it so much.

Because the time I spent in London was not a time of healthy-eating. It was a time of takeaways. And food bought in train stations on the way home. And ready meals. I was famous in my department for how long I could make 1 large Dominos pizza last (4/5 days if I also had a side order) and I ate more of Tesco's Macaroni Cheese than any person reasonably should. I tried to counter-balance my unhealthy dinners by having a healthy lunch, but being unable to prepare these in advance meant they came from Pret or Eat or Itsu which was a financial drain. The only times I really ate anything healthy at home was when my boyfriend was visiting and he could do the chopping/stirring/washing up but that was 2 weekends a month. 

Home-cooked dinners aside, it's still hard for me to embrace healthy eating. It does not come naturally to me. I was the fussiest of fussy eaters as a child (think nothing touching on the plate, nothing that wasn't plain chicken, plain potatoes, plain bread...etc) and while I've embraced a large amount of foods since then I'm still fussier than the average. I've spent my whole life getting by on crisps and chocolate and pizza so having an apple instead is completely counter-intuitive. 

But I'm trying. Over the weekend I went to my boyfriend's house for a marathon TV binge and instead of ordering Dominos like we often do, we made homemade salsa. 10 tomatoes, 1 onion, 2 chillies, juice of 2 limes and 2 bunches of coriander (don't take the coriander away from me, I googled it and it has health benefits okay?) did 2 of us 2 meals and is chock-full of goodness (if you forget about the salty tortilla chips we ate the whole thing with). Healthy AND delicious. But it took ages to chop everything fine enough and I could only do a couple of the tomatoes, 1 bunch of coriander and the chillies (I ended up with wicked chilli burn on my fingers too) while sat on a stool and even then I was exhausted by the end. You may remember me admitting to eating only Krispy Kremes for breakfast for a little while...now I'm mostly eating nuts and dried mango instead. So I really am trying.

The thing about chronic illness though...is that you feel ill. Chronically. And there's something about not feeling good that makes you want to eat things that will make you feel better. And by that I don't mean spinach, I mean pizza. Feeling ill constantly just makes you want to eat tasty, preservative-filled junk food. Fizzy drinks full of sugar to help with the fatigue, chocolate as a mood-booster. And while I know that long-term, in order for me to get a bit better I need to eat better, chronic illness makes focusing on the long-term hard. Because you just want some kind, any kind, of short-term relief constantly, even if that relief comes in the form of a Krispy Kreme doughnut for breakfast.

Do you have any tips for easy healthy eating?

Friday 5 August 2016

My Etsy Addiction #6

Welcome to the sixth edition of my Etsy Addiction series! As established in my first My Etsy Addiction post, I am an Etsy Addict. Not necessarily just buying, but also browsing, favouriting, planning future gifts. 

I decided to take advantage of this addiction for blogging purposes, and create a regular series of posts showcasing some of my favourite Etsy finds. TPlease be aware, some of the items I feature will be from shops based outside of the UK, so the shipping costs can be extensive and there can also be customs charges involved. All photos featured are from the Etsy listings.

As Pokemon Go is all the rage rn, what about this on-trend and stylish Pokeball necklace from JodiePopeJewellery

These quirky coasters from YouBadCat are perfect for British living rooms, given how much we discuss the weather!

This beautiful, eye-catching phone case from PapioPress

This delicate I Capture the Castle brooch from CaptureTheCastleShop is perfect for literary types

This sleek and elegant copper tray from Marbleandmetal

Wednesday 3 August 2016

Chronic Illness Positives

I've been feeling pretty miserable lately, so to inject a bit of positivity into my life I started to think about the positives of having a chronic illness. While these in no way make up for having the illness in the first place, I think does help a bit to remember them every now and again, to know there's a bit of light in the dark. So here are the positive aspects of my chronic illness.

1. I can zip/unzip all my own dresses all the way up/down: thanks to my hypermobile shoulders, I have no problem reaching over my shoulder/up my back to do/undo my own zips.

2. I am a walking, talking pharmacy: you need painkillers? I got 'em. And I got multiple types. I will likely also always have anti-inflammatory gel, antacids, and an array of other health-related items. I'm super handy to have in the office in that regard.

3. People do things for me: I mean, this is a positive but it can also be a negative because I am nothing if not exploitative. But one of the positives about having a chronic illness is that people help you out more: carry things, fetch things, change your bedlinen. All sorts of stuff. Today my colleague offered to staple things for me (I have trouble with this). Even if you don't take people up on their offers, it's nice that they're there.

4. I can swim really well: I'm not entirely convinced this is hypermobility-related, but I've decided to think it is. I'm super ungainly/clumsy/awful on land, but in water I'm pretty awesome. 

5. I (usually) get my prescriptions on time: I was always TERRIBLE at getting the prescriptions for my asthma before my chronic condition worsened, but now I take regular medication and need regular painkillers, I'm pretty good at getting it in (mostly) on time every month.

6.  I know a lot about TV shows: having a chronic condition means I'm always tired and in pain, so I watch a lot of TV. This means I am very knowledgable about all things show-related, so if you need a recommendation, or someone to 'OH MY GOD' with about a show, chances are I'm your girl.

7. I can get ready for work in under 15 minutes: true story. I can brush my teeth, cleanse/moisturise my face and brush my hair, get dressed and collect all necessities in under 15 minutes. And that's with having to have a little rest in between each item of clothing I put on. 

8. Justifiable napping: one of the worst parts of chronic illness is constant fatigue, but this does give you a valid reason to have naps. And who doesn't love a good nap?

9. I have really soft skin: the only positive physical aspect of my condition in a long, long list of negatives. My condition affects the feel of my skin, making it quite soft and velvety-feeling. Which is  good because I'm too lazy to exfoliate/moisturise anything but my face with any regularity

10. It's made me stronger: it's hard to know how much being chronically ill my whole life has truly shaped my personality, but I'm convinced I wouldn't be as strong or as resilient as I am without having been chronically ill. 

What positive aspects can you find to your chronic illness?

Sunday 31 July 2016

July in Review

Oh July. You've been an up and down month for sure. I finally got back into the groove of reading, thanks to Jenny Colgan's books, and we had some glorious hot days, plus I've really enjoyed playing Pokemon Go since it released earlier in the month. Most excitingly I went down to London to see Harry Potter and the Cursed Child which was just exceptional. But I've also experienced a lot of pain in July. Partly down to the increased walking I've been doing thanks to Pokemon Go, but also not, and it's made this month rather uncomfortable. I've also felt generally down, which hasn't helped much!

Books Read in July
The Second Love of My Life - Victoria Walters
Billy and Me - Giovanna Fletcher
The Little Shop of Happy-Ever After - Jenny Colgan
Little Beach Street Bakery - Jenny Colgan

Favourite Book of July
The Little Shop of Happy-Ever After - Jenny Colgan

July 2016 will forever be the month I discovered Jenny Colgan's adult fiction. I read The Little Shop because it was 99p on Kindle and adored it so swiftly ordered more. They're funny and food-filled and really enjoyable escapism. I'm looking forward to reading more! 


Books Acquired in July

The Second Love of My Life - Victoria Walters (Kindle)
Billy and Me - Giovanna Fletcher (Kindle)
The Little Shop of Happy-Ever After - Jenny Colgan (Kindle)
Little Beach Street Bakery - Jenny Colgan
Summer at the Little Beach Street Bakery - Jenny Colgan
Rosie Hopkin's Sweetshop of Dreams - Jenny Colgan
The Loveliest Chocolate Shop in Paris - Jenny Colgan


Films Seen at the Cinema in July
Now You See Me 2
The Legend of Tarzan
Star Trek Beyond

Well, Ghosbusters was just fantastic wasn't it? One of the best films I've seen so far this year for sure. I also really enjoyed NYSM2 and Star Trek Beyond, though the dialogue in the latter was really terrible!


Catch Up On This Month's Blog Posts

It's been less of a blogging month this month, but I posted about The True Cost of Chronic Illness, as well as sharing another of my Etsy Addiction posts. I also shared my One Year On update, and some tips for playing Pokemon Go while chronically ill. 


In August I'm really looking forward to an event with one of my favourite authors: Maggie Stiefvater! That's actually happening tomorrow. Then later in the week I'm super excited to be going to a midnight showing of The Suicide Squad. Then I have a trip to Newcastle to see Patrick Stewart and Ian McKellan in No Man's Land, and of course another Bank Holiday Monday! Books-wise, I'm looking forward to the release of The Potion Diaries: The Royal Tour by Amy Alward. I read the first book last year (it's now one of Zoella's Book Club choices) and loved it, so I have high hopes for the sequel. I'm hoping August will be a good month. 

Tuesday 26 July 2016

Gotta Catch 'Em All

Like a lot of people, I've been spending a lot of time lately playing Pokémon Go. I was at primary school during peak Poké-mania; I watched the cartoon, I collected the cards, so the opportunity to relive my childhood is tantalising. Plus, it's super addictive, and I'm super competitive, so I've clocked up a lotta time. 

The benefits of Pokémon Go are huge. It's great for mental health and for physical health; getting people out of the house, walking, enjoying an activity. It's also had a lot of anecdotal social benefits; people talking to each other! It's also so much fun. The thrill of finally seeing a Meowth, or evolving the Haunter you've been saving Gastly candies for, is pretty awesome.

One of the great things about Pokémon Go is the best way to play it is to go out, walk about. One of the worst things about Pokémon Go is the best way to play it is to go out, walk about. If you are a person for which this is a problem, it's much harder to play the game to its fullest extent, and this is sad. If you're anything like me, you pushed yourself a bit *toooo* far last week desperate to level up or catch that elusive Pokémon, and are now paying the price. While I love the way the game has been set up, and it's hard to imagine a way around this problem, it is frustrating having something else I really enjoy that I can't do as much as I'd like. I took more painkillers last week than I've taken for a long time, all to manage the extra pain caused by playing Pokémon Go. I had to spend most of last weekend resting having completely worn myself out from all the walking around and from forsaking my afternoon naps to go on Pokéhunts.

If you're in the same boat as me, Tania of When Tania Talks shared some fantastic disability hacks for playing Pokémon Go that I absolutely recommend taking a look at. 

And here are a few tips of my own:

If you aren't going to battle, ditch the potions: They're obviously super handy if you're planning to take over all the gyms in your area, but if you're a collector only, they're just taking up space in your bag. Space that, if you aren't able to go out as much as you'd like to, is better used storing Pokéballs.

Consider in-app purchases: This is usually a massive no-no for me, but when you think about it you pay for most forms of entertainment (buying a book, renting a movie, going to the cinema, playing a video game...) so if you're really enjoying Pokémon Go and aren't able to play it as fully as you'd like, in-app purchases are worth thinking about. While you'll burn through cash quickly buying your Pokéballs rather than picking them up at Pokéstops, a bag expansion means that if you're out and can access multiple Pokéstops, you can hoard extra Pokéballs for those times you won't be up for trips out. Buying extra incubators will make the most of the walking you can do, as you're able to hatch multiple eggs at once, and more incense will bring the Pokémon to you when you can't go to them.

Bus rides are your friend: I discovered last Monday that my bus rides to work hit many Pokéstops and are usually slow enough for me to catch Pokémon as well. If you're not able to walk far, a round-trip bus ride would enable you to reach multiple Pokéstops and have the opportunity to catch more Pokémon for a lot less energy than an extended walk. As an added bonus, those slower parts of your journey (stuck in traffic, slowing down for a bus-stop) can actually count towards the KMs needed to hatch eggs. 

Stop hating on the Pidgeys: You might be fed up of seeing them, but Pidgeys are a great way to level up. They're everywhere and they only take 12 candies to evolve. Save them up, whack on a Lucky Egg and evolve the lot. You'll get a whole bunch of XP and save yourself lots of walking around catching enough Pokemon to get there. 

Hijack your partner/parent/sibling/friend: If someone you know and see regularly is also playing, get them to take your phone out with them every now and again. If they're doing a Pokéstop run, they can take your phone out with them and stock you up while they're at it. I've even been known to send my boyfriend for a walk round the block to get the rest of the steps on a nearly-hatched egg...

So far I've managed to bag Meowths, Eevees, Jigglypuffs, Chanseys and, finally on Sunday afternoon, a Clefairy. I'm hoping this week will bring me an Abra, a Vaporeon and, of course, a Pikachu. Which Pokémon are you hoping to catch this week?

Tuesday 12 July 2016

One Year On

As you read this post I'm back in London, having a few nice days to celebrate my boyfriend's birthday, which is exactly what we were doing this time last year when I first got the horrible pain that set this whole chain of events off. 

I have come full circle. 

I've been feeling fairly reflective lately, thinking about what I've lost and gained. About what's changed. About what hasn't. I'm still working, but I do less than half the hours I used to. I still enjoy my job, though it's very different and mostly a lot less stressful. I've lost time spent with my friends and I've lost the events, the plays, the dinners, the cinema trips and the satisfied feeling I had from doing all these things I enjoy so regularly. I've lost some independence. 

But I've also gained time with my boyfriend. When I lived in London we saw each other one weekend a month. Sometimes 2 weekends a month. Now we see each other most of the week; he practically lives at my house and I still haven't gotten over the novelty of seeing him so much. 

And I've gained space. Space to take a breath. Space to take a step out of my life and live a different one for a while. Tread a slightly different path. Space to recover, to build my body back up and to eat better and to try and take care of myself properly for the first time in a long time. 

And that's the biggest thing I've gained. The desire to care about myself. My body used to be a thing I dragged myself around in. A bit defective, mostly hated, made fun of. Now I'm trying to nurture it, to listen to it. To fix it up a bit. New wheels. Nice paint job. Spring clean. I (sort of) eat better, I (try to) sleep better. I exercise. I even look after my hair and skin better. I wear those insoles in sensible, supportive shoes.

Progress feels slow. I thought I'd be doing better than I am, but I am better than I was. I'm more tired than ever and my muscles ache but the uncomfortable joint pains are lessening. The feeling that my knees are hollow and will collapse any second, the sharp knife-like pains in the fronts of my hips, those pains happen less. The scary pains. The ones that make me wonder what's wrong, whether I'm injuring myself, whether I should stop or keep going or maybe just lie down for a month. 

But everytime I look at my calf muscles, which are getting strong and developed from swimming, I feel a sense of achievement. I can do this. I am doing this. I remember the first time I went swimming and barely did 10 lengths, and subluxed my shoulder,  and was shaky and sick and stiff for 3 days afterwards, and I think about how I can now swim 1 kilometre like it's nothing and I can see the progress I'm making. I think back to the first time I did the Shoulder Bridge exercise and my thighs shook with the sheer effort of holding themselves up, and how I can now do 20 of them without that happening and how I can lift a leg off the floor each time and I can see the progress I'm making.

This is going to take longer than the year my Rheumatologist predicted last September. And maybe I won't ever get back to where I was, fully. But I'm learning to be okay with that. As long as I know I'm doing everything I can, I will accept whatever the end result is, and whatever that means for my life.

I will get strong, I will feel better. I will end up with abs like Jessica Ennis-Hill. 

Friday 8 July 2016

My Etsy Addiction #5

As established in my first My Etsy Addiction post, I am an Etsy Addict. Not necessarily just buying, but also browsing, favouriting, planning future gifts. 

I decided to take advantage of this addiction for blogging purposes, and create a regular series of posts showcasing some of my favourite Etsy finds. This is part the fifth. Please be aware, some of the items I feature will be from shops based outside of the UK, so the shipping costs can be extensive and there can also be customs charges involved. All photos featured are from the Etsy listings.

These modern and stylish copper-dipped concrete plant pots from SortCement

This daintily out-of-this-world planet necklace from WrensHandiwork

This super cute decorative miniature woodland from SketchInc

This travel-ready toiletries bag from CamillaBDesigns

This very gothic, tarot-card inspired print from LadyGloom

Tuesday 5 July 2016

The True Cost of Chronic Illness

I'm very fortunate in that my chronic illness doesn't require as much financial input as many other people need. But there are costs involved in being ill that I don't think people are always aware of. I know I'm in the privileged position of living at home, where while I do contribute to the rent and bills it's at a much lower rate than if I lived alone. But I thought it would be interesting to look at the costs I do have, those things I wouldn't have to budget money for if I wasn't chronically ill. 

Over the counter meds: I get prescription painkillers, but I take Paracetamol alongside them because it increases their efficacy, even though it doesn't do anything on its own for my pain, and Ibuprofen helps if my pain is caused by exercise, so they are worth having. But I feel like enough of a drain on the NHS without getting these on a prescription (I once read an article about the cost of all the Paracetamol prescriptions). So I buy them. They don't cost a lot, but given that I can get through a pack of Paracetamol in 2 days if my pain is bad, it certainly does add up. When you add in the cost of Paracetamol with Codeine which I like to have onhand and is much pricier than standard Paracetamol, this cost increases. I get a lot of acid reflux (thanks medication), so I need a lot of antacids. I'm quite fussy about them and I only like this one brand (Remegel) which is sadly on the pricier end. Then there's anti-inflammatory gel, Epsom Salts to add to baths, various supplements...etc

Adaptive Aids: Many disabled and chronically ill people need mobility aids like wheelchairs and mobility scooters which often have to be bought privately at huge costs. Then there's things like canes or crutches as well. For me, I need aids such as heatpacks and hot water bottles to help with my pain, a TENS machine, a massager, adapted cutlery...the list goes on and the cost goes up. 

NHS Pre-Payment Prescription Card: If you get a certain amount of prescriptions a year, you are entitled to get one of these cards which entails paying a fixed amount every year towards your prescriptions and being able to get as many as you need. So while it does work out significantly cheaper than paying for individual prescriptions, it's an additional costs you wouldn't have if you didn't need the prescriptions in the first place. 

Transport/Travel: As a disabled person I often struggle to walk, and if I'm in a lot of pain then waiting for and being on cold, jolting public transport isn't possible. Even the vibration of the bus engine can set one of my limbs spasming if it's a bad day. In those cases I need taxis and those need paying for. If I'm flying, I need extra legroom seats a lot. And ofc travel insurance is more if you have pre-existing conditions. I might have to pay more for accommodation so it is close to transport/has multiple beds because I can struggle to share if I'm ill. I usually have to travel extra days so I can fit in rest periods, and take extra days annual leave for recovery. 

Footwear: I have to be super careful about what shoes I wear because so many of my problems are exacerbated by poor/unsupportive footwear. I was very lucky to get my insoles on the NHS, but I need the shoes to go with them. Sadly I can't just pick up a pair of ballet flats in Primark, new shoes mean Dr Martens or decent trainers right now. And while you certainly get value for money with the amount of time they last, the initial outgoing is high. Plus I like having multiple pairs, no one wants only one pair of shoes! 

Macbook Air: I definitely needed a new laptop, but I wouldn't have necessarily gone with a Macbook had I not been chronically ill. As well as needing something with a decent spec, I mostly needed something lightweight that I could carry around, that I could have on my knees, that I could pick up without worrying I was going to hurt myself or drop it. And I couldn't find that outside of my Macbook Air.

Convenience Food: One of my biggest regular chronic illness-related outgoings is on convenience food. This is lower now I live at home and work part-time as my mum cooks my dinners and I don't stay at work for lunch, but when I lived in London I was always far too tired/lacking in energy to prepare food. I would buy my lunch out, at a cost of at least £3 a day (usually more), and I would almost always buy a ready meal/takeaway for dinner too. This meant my foodbill was over twice what it could have been if I'd prepared my own food. Many chronically ill people need special foods that cost more due to allergies or intolerances and these are always significantly more expensive.

Money lost: Then there's the financial losses. The income I lose from only being able to work part-time. At the moment I work half hours, so I lose out on half the income I could be earning. Plus I do a lower level job than I was doing previously, as I wanted something lower-stress. That too has reduced my monthly income.  And there's the money lost on cancelled plans. I fortunately have an Unlimited card, so if I can't go on a pre-arranged cinema trip it doesn't cost me any extra. But I recently missed out on a theatre trip because I was too ill, which meant I lost the money I paid for tickets. I've also had to miss a couple of book events, and while the tickets for these aren't that expensive, missing multiple ones can add up. 

How does having a chronic illness affect your bank balance?

Sunday 3 July 2016

June in Review

June has been an odd month. There have been some really positive bits: visits from friends, meals out, a trip to the theatre to see an adaptation of The Night Watch (so good). But it's also been awful. I've been ill, I've done barely any structured exercise, only doing some walking and some physio exercises at home, and finally some swimming this week. Add in the horrible weather we've been having, that horrific referendum result and the subsequent fall out, and not even Wimbledon starting this week has been able to cheer me up. 

Books Read in June
Me Before You - Jojo Moyes
This Savage Song - V.E Schwab

Favourite Book of June
Oh man, I totally failed at reading this month. I read Me Before You after seeing the film as I was interested in the differences. I have to say I thought the book was a lot more problematic and also a lot less entertaining. I don't think Jojo Moyes' writing style is for me. I really enjoyed This Savage Song, though it took me a long time to get into it and it's probably my least favourite of Victoria Schwab's books. By default it's my favourite of the month.


Books Acquired in June

I bought You Know Me Well and This Savage Song in Waterstones at the beginning of the month. I actually already read YKMW a while back, when the publisher I worked for had it on submission. I enjoyed This Savage Song, but not as much as I expected to/enjoyed the author's other books. I haven't read Summer Days and Summer Nights yet--I'm waiting for a suitably sunny day. I loved the Christmas anthology from last year and got the US covers of both as I dislike the gaudy UK ones. 


Films Seen at the Cinema in June
Me Before You
Mother's Day
Independence Day: Resurgence 

June has been the month of easy viewing. I went to see Me Before You despite the issues surrounding it, and while I totally agree with what people are saying about it in terms of representation, I actually really enjoyed a lot of this film! Mother's Day was...mixed. Some funny moments, some terribleness. Independence Day 2 was also mixed: a lot of the humorous elements felt forced and fell really flat and I didn't really care about many of the characters. Jeff Goldblum being in it certainly helped, though. 


Catch Up On This Month's Blog Posts

My first post of the month was a report on my recent holiday to London and Stockholm, followed by a post about how I'm no longer embarrassed about my illness. I then shared the 4th of my Etsy Addiction posts. I wrote a guide to the types of pain I experience, as well as sharing a portion of my travel wishlist. I wrote about everyday struggles; some small, mundane things I find difficult to do, and shared the 3rd of my Rediscovering Manchester posts. This week I also posted about the frustration of not living my best life.


I'm really hoping July will be a better month. I have some fun stuff coming up: the second week of Wimbledon, a trip to London that brings a visit to the Harry Potter Studio Tour AND I'm going to see The Cursed Child! I'm so, so excited about this. I'm going with my boyfriend and lots of friends and it will hopefully be so much fun. I'm looking forward to the releases of Tarzan, Ghostbusters, Star Trek and The BFG and to the continuation of The Catch on Sky Living which I have been LOVING. 

Tuesday 28 June 2016

The Frustration of Not Living Your Best Life

I recently found out that one of my favourite authors is doing an event in Liverpool in August. I was pretty stoked as she's a US author so I've only seen her once before. The problem? It's the same week as I'm going to an event with another US author I've only seen once before, one on the Monday and one on the Wednesday.

Why is this a problem, exactly? Because I'm not sure I can cope with 2 events in 3 days - especially at the beginning of the week and extra especially when one involves travel to Liverpool. I hate having to consider these things now, I hate having to plan my weeks so precisely. When I lived in London, weekly pacing was still something I had to consider, just on a much smaller scale. If I was out 3 evenings in the week I would be sure to have a quiet weekend to compensate. If I was at a work event on the weekend, I would try and get my lieu day for the following Monday so I had time to recover. Pacing at that level was practically second nature to me by that point, which means that when I got sicker I felt like I was learning how to plan my time all over again, starting from scratch.

I was used to a life where I could more or less do what I wanted, when I wanted. Taking a weekend off after a busy week felt like a luxury, not a necessity. Trying to keep Friday nights to myself was a chance to unwind and indulge, not a requirement.

Back in the old days, I wouldn't think twice about multiple events in one week, whereas now, if I have a medical appointment one day I have to seriously consider whether I'll also have the energy for a social activity. Arranging a cinema trip means writing off the rest of the week. And it is SO frustrating. I've missed more film releases than I've caught in the past few months and I've barely seen anyone outside of my immediate family/partner for weeks. The fallout from my week away was another week, followed by a further week of actual illness. 

I feel like I'm missing out on so much. I know films will come out on DVD, friends will still be there, restaurants can be visited another time, but that's not really the point. The point is I had my life at a place where I mostly liked it. Where I was living the kind of life I wanted to live; the kind of life I envisioned myself living. Busy and cultured, full of friends and theatre trips and meals out and extended city breaks. I feel like I'm moving further away from that person and back towards the one whose only hobby to speak of is binge-watching boxsets whilst chain-eating multipacks of crisps. And while that person was fine while I was her, she isn't the kind of person I want to be anymore.

Chronic Illness robs you of a lot of things but the frustrated feeling that you aren't living your best life is one of the cruelest. Especially because I keep trying to be this person. I book things, I plan things and I either have to cancel them and feel shit about it, or push through and then feel shit in an entirely different way. This week I've been swimming, am going to the cinema, have a medical appointment, and tickets for a play and dinner reservations at a restaurant I'm excited about on Friday evening as a payday treat. Not to mention the other 2 lots of exercise I'm supposed to be doing to try and fix my body. And I sit here typing this post out wondering if I'm going to have to cancel something, and if so what will it be. Next Friday I'm going down to London for a week and instead of being excited about it (I'm going to see The Cursed Child, ffs) I've been worrying about how I'm going to cope while I'm there, and how bad I'm going to feel, and for how long, once I'm back. We've had the EU referendum result recently, not one I'm happy with, and I would like to go out and protest with some of my fellow Remainers, but I know I'm not well enough to manage. Instead I'm resorting to passive-aggressive posting on Facebook and scathing rants about how our government is pure evil. 

I don't want to just accept that my life has to have less in it now, but I can't help but think I'd be happier if I did. And feeling better when I do take it easy is a tantalising incentive. What I probably need to do is find new ways to fill my life with things that aren't TV. It's one of the reasons I started this blog, after all. But most crafts involve your hands and my hands aren't up to much lately.

God this has been one depressing post. I usually try and inject at least a modicum of humour into these things (cue blank stares and comments of "oh, these are supposed to be *funny?!*) but I'm afraid I'm coming up dry today. Must be the weather. Or possibly something to do with that EU Referendum outcome I mentioned.

Have a picture of a cat instead.

Oh, and if you have any suggestions for things I can do that don't necessarily involve leaving the house, or ways to pace myself better, I'm all ears. Or eyes.