Tuesday, 26 April 2016

Suffering a Setback (or several)

I had a really positive start to April and I felt like I'd just gotten into a bit of a steady rhythm and was chugging along nicely when my life decided to change that up a bit. 

I got some bad news that came as a bit of a shock and could potentially have a pretty big effect on my life in the nearish future. Sounds cryptic I know but I don't really want to talk about it yet, other than to say it's not health-related, especially when I won't know fully what's going on for a while. Then I had a tonne of problems with the opticians, getting new glasses. It's a bit of a saga and it's unfortunately still ongoing and isn't really something I needed to happen. And then, to top it all off, my eczema decided to come back. I haven't had a full bout of eczema in a long while; I occasionally get a bit in the crook of my right arm but now it's on both arms, my eyelids, my legs. We thought it might be environmental and made some changes but it doesn't seem to be. 

And of course, I'm really tired. So tired. Tireder than ever and I wasn't even sure it was possible for me to be even more tired. My post-work naps are now so long they can't even be called naps anymore, I'm back to cancelling social plans and, worst of all, we've decided to cut back on the exercise for a little while and go down to 2 sessions a week, alternating swimming with Aqua Zumba.  This is a bit of a blow, I really thought I could work part time & exercise 3 times a week and be fine. But I've had to miss a couple of sessions already and I think psychologically it's better to choose to cut back than be forced to cancel something every week. Part of the issue is that Aqua Zumba is Monday night, quite late, which isn't ideal and the only real time we can go swimming is Tuesday afternoon. So my exercise regime is really front-loaded and when added to the fact I don't sleep well on Sunday nights, it's not really a recipe for success. 

An indication of how tired I am is that today is the publication day of my most anticipated book of the year, The Raven King by Maggie Stiefvater. I've been waiting for this book since October 2014, and and I managed to pick it up last Wednesday, nearly a week before publication (albeit with a damaged cover *sob*) and I was super excited about it, I read nearly 80 pages and then I couldn't read any more. Because I was too tired. Too tired to read my most anticipated book of the year. I didn't pick it up again until Friday evening (I finished it on Saturday, it's magnificent).

I've also been really struggling with my April goals. I did pretty well with my March ones so I set a few more ambitious ones for April and I haven't hit a single one. It's super depressing to look at a list of things that really aren't that hard to achieve and know you just haven't had the energy to achieve them.

I feel like I'm suffering several setbacks all at once and it's really demoralising. I know, objectively, that things don't always go according to plan, but I'm not very good with things not going according to *my* plan, and having so many things go wrong at once is hard to deal with. So I've been self-medicating in self-pity. Not with pills or alcohol but with Krispy Kremes. I eat Krispy Kremes for breakfast. It's awful, not to mention expensive, but I'm so tired in the morning and I need energy and I just want doughnut deliciousness and it has become a terrible, shameful habit. So no more doughnuts. For the sake of my bank account if nothing else. Instead, I'm trying to focus on the positive changes. My sympathetic GP has given me sleeping tablets to take on Sundays, which is my worst night for sleep and sets me up super badly for the week. He's also sending me for blood tests but I can't have those done until May. I'm trying to see the positive side of the exercise change; our routine is pretty rigid and taking one element out will hopefully put some more balance back in my life until I'm ready to add that 3rd session back in. I have a pilates routine that I've been mostly--you guessed it--too tired to do, so I'm hoping to incorporate that back into my week more as I see a lot of benefit from it when I can do it. 

And I have a lot of nice things happening in May. A friend is coming to visit, I'm finally going down to London again and I'm off to Stockholm to visit a friend who moved out there recently. I've also just booked an afternoon of spa treatments for me and my mum. And if I stay this burnt out, I won't enjoy any of that and I'll be worse off as a result of it all. So proactively making these changes now will allow me to enjoy all the fun stuff coming up more, and hopefully ensure the fall out from it is as limited as it can be. Hopefully.

How do you deal with a setback?

Saturday, 23 April 2016

Rediscovering Manchester #1 - Teacup // John Rylands Library // Be At One

Despite living in Manchester most of my life, I've never felt particularly bonded with it. I prefer the other two cities I've lived in, Liverpool and London, and I've never felt like a true Mancunian; despite being very proud of being Northern.

But I'm back here now, and here I'm staying for at least the foreseeable future. So I decided I would give Manchester a chance; I would visit places, revisit places, wander around, try and get a feel for the city I've called home for over 20 years. And because I never do anything without an ulterior motive, I figured this would also make an excellent blog post series.

My friend Jim came to visit me a few weeks ago and we spent the day in Manchester which gave me the opportunity to visit a couple of places I'd been keen to go to (and to revisit the beautiful John Rylands library).

We started off in Teacup, a teashop/cafe in the Northern Quarter. It's a pretty big place which is nice for a cafe in the NQ, which often have limited seating, so we were seated after just a short wait for someone to come and actually seat us. The menu is really varied, and there's an extensive tea option too. Teacup serves cakes, which are HUGE and displayed pride of place on the counter.

I ordered rosebud tea, dippy duck eggs with ciabatta soldiers and finished off with a slice of Pistachio cake. Our food came pretty quickly, and looked lovely. My tea had a beautiful flavour, and the ciabatta soldiers were really delicious and had a proper amount of butter. I've never had duck eggs before and they were lovely, though I do like my dippy eggs a touch dippier than they were served. 

We wouldn't have done Teacup justice without trying the cakes, so I ordered the pistachio cake which was HUGE. The sponge was light and moist, and I really liked having the whole (and clearly high quality) pistachios mixed in. The icing was buttercream with little bits of crystallised rose on. I would have liked more rose incorporated somehow, either in the buttercream icing or internal buttercream, because as delicious as the cake was it did get a bit same-y. Teacup unfortunately only has one card machine, which for such a big place is a bit of an error. We did have to wait a while to pay, and I ended up getting a bit snappy when the machine was taken to people who had waited less time than us to pay (sorry Teacup man). I wouldn't normally mind so much, but with Jim only visiting for a few hours we were on a bit of a schedule. 

We headed down to Deansgate and into the John Ryland's library. The exterior of the library is beautiful; a lovely red-brick gothic affair. The location of the building, and my poor photography skills, means it's difficult to get a decent picture of the exterior of the library. The library was designed by John Ryland's third wife in his memory, in 1889 and it took a decade to build. 

The interior comes as a bit of a shock initially; being very modern. But as soon as you get into the library proper, you're hit with sheer opulence that is the very definition of Victorian Gothic, and is reminiscent of a church with sandstone walls, carvings, stained glass and vaulted ceilings. 

The reading room is beautiful room made predominantly of wood, with little nooks with study desks and, of course, bookshelves. It was lovely to see this room being used for actual study; how marvellous it must be to revise or write an essay in such a space (though maybe not given all the visitors wandering around taking photos). The room has a huge vaulted ceiling (and there are mirrors to look at it without damaging your neck!) and a balcony that I don't think is open to the public, decorated with statues of literary figures like Plato, Shakespeare and Milton. It's a gorgeous space with a real sense of peace, and is exactly what comes to mind when you think about a library!

What's outside the reading room is almost more spectacular: a beautiful stone staircase complete with a balcony that severely tempts you to recreate that Romeo and Juliet scene. 

There's always an interesting mini-exhibition on, plus more rooms and corridors to explore. There's even original Victorian toilets to take a peek at (or a pee in, they're still in use!). It's not hard to see why this glorious library tops Tripadvisor's list of things to do in Manchester. 

All that woodwork made us thirsty, so we headed to Be At One, a cocktail bar that opened in Barton Arcade recently. It's the latest in a monster chain, their 30th location, in fact. The bar is very modern inside, all dark wood and red leather and neon.

 There's a HUGE cocktail menu, and a decent happy hour with drinks 241 (same one, obvs) from 16.30 - 19.00/20.00 most days. One of Be At One's main points is the friendliness of the staff. And they were VERY friendly. The shift manager asked me my name, gave me his and shook my hand (and I saw him do that with every customer). It's a little weird, but nice. Apparently they have a policy that a customer should have a drink in front of them within 60 seconds of placing the order, which definitely didn't happen with us for either drink we ordered, but it wasn't a long wait. We had Passionfruit Margaritas and English Fizz (Hendricks, elderflower liqueur, cucumber syrup, lemon, mint and soda water). The latter is a favourite type of cocktail of mine; fresh and herby and slightly floral, and BAO's version was nice but not the best I've had. I enjoyed the cocktails, I'll definitely go back, but it's certainly not top of my cocktail bar list. 

Have you visited any of these places?

Tuesday, 19 April 2016

Pain vs Pills: The Difficulty in Finding a Balance

After last week's in defence of painkillers post, I've been thinking a lot about the balancing act that is having chronic pain and taking painkillers. Pain is something I've never lived without, and being in the same type of pain, at the same level, I learnt to sort of tune it out. It was there, I knew it was there, but I could ignore it enough to get on with my day. Before my condition worsened, managing my pain was so intuitive that most of the time I barely even noticed I was doing it.

But then my Joint Hypermobility Syndrome did get worse and I was hit with a whole host of worsened pain, of new pain, of pain in new places. I felt like I had developed a condition for the first time, with a beginner's knowledge of how to manage it. I used to be good at knowing what would make my pain worse, and avoiding those things if I could, and if not having the strategies, and the medication, in place to deal with those times, but now I had no idea what to do.

While pain management involves a whole host of things beyond medication, the thing I have struggled with the most is finding a painkiller balance that works for me, having never needed to take regular pain relief before. While I know I will never not be in pain, my base level of pain is a lot higher than it used to be and that makes it hard to deal with the way I am used to dealing with it. That, along with increased pain from regular activities and even worse pain from irregular ones, means finding a pain vs painkiller balance strongly resembles a quest for the holy grail. 

When I first started taking the main prescription painkiller I currently take, I was prescribed one, twice a day. At first this worked wonders and I felt so much better, which was a relief because the first pills I was prescribed didn't help much and also gave me the worst acid reflux in history and eventually caused a painful and worrying acute burning sensation in my stomach. Bad times. I am, unfortunately, a person who becomes tolerant to medication very quickly, and so that one tablet, twice a day, soon became not enough. At this point I was still working full-time and really struggling. Sometimes I would have to stop typing for a bit because of the pain in my hands and arms. The short walk from the station to my office was a daily torture.

My mum kept telling me I could take more, 2 tablets a day was not the maximum dose. But I was worried about how fast my tolerance to them would progress, and how quickly I'd run out when I actually only had enough for 2 a day (also the *rules*. I couldn't take more than prescribed, that was *bad*).  I then moved, and it took nearly 2 months to sort out an appointment with a GP: "Yeah, you can actually take 2 of these up to 4 times a day" she said. Well. Okay then. Now I had less pain, which was nice, but also I was taking up to 8 strong painkillers a day, and that does not come without a cost. If I have to take a lot of painkillers in a day I always have an undercurrent of nausea, I lose my appetite, and I just feel a bit...strange. Not entirely natural. It's a trade off, and sometimes it's one I don't want to make.

One of the things I struggle with most is when to take painkillers at night. It's not until I settle down to sleep that sometimes I realise just how much pain I've actually been in that day. And instead of just taking painkillers then, I think I can sleep through it and I spend 3 hours tossing and turning before giving in and taking painkillers in the early hours, which leaves me feeling really icky and out of it the next day. And I always fall into that trap, no matter how many times I think I won't.

I try to rate my pain daily, or several times a day if needed, on a scale of 1 - 10. It's relative to my own pain, as in a 1 is the least amount of pain I, personally, could be in with my joints and 10 is the most. If I tried to go off a universal scale there just wouldn't be enough leeway for it to suit my needs. To give this a bit of context, in the old days pre-worsened condition, most days would be a 2 or a 3, with a 4 being a bad day an a 5 being 'wow I really pushed myself here, this is bad times'. Even then that would be fixed with over the counter stuff. Now, most days are a 6. Quite a few days are a 7. If I have a 4 day, that's a good day. The scale helps me keep things in perspective, and helps me decide when to take painkillers. I usually put up with the pain until it hits a 7. But some days I can cope with a 7, and some days I can't cope with a 5. It also depends on where the pain is, if it's in my hands and arms, and I'm trying to work, it's more likely that I'll take painkillers.

Once I've made the decision to take something, what do I take? Start with Paracetamol and Ibuprofen and see how I go? Hit it straight with the strong stuff because it's pretty bad? Take *everything*? Sometimes I feel like my method is a bit scattergun, because it's based heavily on how I feel (emotionally, not physically). Once I've rationally rated the pain, it's my emotional state that usually decides what I do medication-wise. Can I cope for long enough to see if an over-the-counter-combo will do the trick? Or do I just need to be in as little pain as possible as soon as possible? It's like a little flowchart in my head that tries to apply logic to what is actually a very feelings-based decision. Unfortunately, I'm also quite stubborn. So while at the beginning, when the pain was new and scary I was in a 'give me ALL the drugs' frame of mind, now I'm a bit like 'I'm bigger than this pain, I'm stronger than this pain, I can outlast this pain', when to an extent that's maybe true, but mostly I'm just making myself miserable (and usually people who have to interact with me miserable too) and stopping myself from doing things I want to do. Like now, for example. At the time of writing this, I had an exercise class a few hours ago, I'm in a lot of pain and I've typed this entire blog post out all the while refusing to do anything about the worsening pain. Which I'll pay for in an hour when I try to sleep through it.

Do you have a good pain vs pills balance? How long did it take you to get there and do you have any tips to help people like me who struggle with it?

Tuesday, 12 April 2016

In Defence of Prescription Painkillers

I managed to live with Joint Hypermobility Syndrome for nearly 26 years without prescription medication. I was never not in pain, but I managed by taking over the counter painkillers, and usually only occasionally, because being in pain was pretty much the main factor of my life. So I managed. 

Until I couldn't. Now I take fairly strong prescription painkillers in combination with several over the counter ones, and I take a regular medication which helps with nerve pain, among other things. A few weeks ago, I miscalculated how long it would take for my repeat prescription to be issued, and how much medication I had left, and this meant I went without that medication for a day and a half. 

A day and a half, you're probably scoffing. It sounds pathetic, right? But this is a medication I take 3x a day, and it has a very short half-life, so by the time I come to take the next dose, the previous one's effects are wearing off. 

So I missed 4 doses. The first day I was exhausted, the kind of tiredness that sits in your face. I'd slept well and for about 10 hours the night before, so I was pretty pissed off. I could feel the tiredness sitting on me all day, like a very heavy and persistent cat. I went swimming as I usually do on a Tuesday, and it wasn't until a bit later that I finally put all the pieces together. I hadn't had any Gabapentin and I was feeling worse than usual. 

It got worse. By that evening I was so tired and in so much pain that I could barely lift my fork to my mouth. My boyfriend ended up washing and drying my hair for me, and I took 2 full doses of painkillers, that's 6 tablets, 4 hours apart, which I try to avoid doing as much as possible. I didn't sleep. I was shaking and I was aching all over. 

I got the prescription the afternoon of the next day and 3 doses later, was feeling more or less normal. It was interesting, in a way. I knew the Gabapentin was helping with my pain; I'd felt a definite decrease in a certain type of pain I experience, and that had led to me being able to take less actual painkillers. Just before I started taking the Gabapentin I'd been having muscle twitches almost constantly and sometimes all over my body. Nothing I did or took stopped them, except the Gabapentin. As soon as I took the first dose, they almost totally stopped. So I knew it was helping in those ways, but I hadn't realised how much it was helping, until I didn't have it.

It's also, I now realise, pretty much the only reason I can work right now. The Caitlin pre-Gabapentin was not in an employable state. The Caitlin on Gabapentin is doing alright. She isn't doing cartwheels or planning to run a marathon, but she can work part-time and she can exercise. She can build her muscles up to help them with supporting her joints, which should lead to less pain, less discomfort, less fatigue and a better quality of life. 

There are people out there who think people like me shouldn't take medications like I take. They call us addicts for needing opiods to get through the day. I recently had an unpleasant appointment with a locum doctor who told me he had a cousin with Joint Hypermobility Syndrome and that I was too young to be taking the medications I'm taking, that I should manage my condition through lifestyle changes and, occasionally, if I really needed it, take Paracetamol. I was shocked and not shocked. Shocked because I've never had an interaction like that with a GP. I've asked several of them for the strong painkillers I'm on, and none of them have said no. But I wasn't shocked because I know this happens. People have these opinions. They have cousins, friends, aunts who manage without medical interventions so I should be able to manage too. I know it's possible to have my condition and live without prescription medication because I did it. I did it until something changed which meant I couldn't do it anymore. Not everyone is affected by health conditions, by illnesses, in the same way. Not everyone has the same symptoms and not everyone is able to deal with those symptoms the same way.

I've made lifestyle changes. I quit my job and I got a less stressful one working less than half the hours. I moved back in with my mum. I scaled my social life right back and I'm more mindful of what activity I do and what effect it will have. I eat better than I used to, which was appallingly. And I exercise. I exercise 3 times a week. But I couldn't do any of that without the medications I take. Without those medications, I would probably be mostly bed-bound which is not my definition of managing my condition. People can be judgemental of medications as much as they want, but I hope those people are never in the position of relying on them like I am. And if they are, I hope they aren't made to feel bad for taking them.

Friday, 8 April 2016

My Etsy Addiction #2

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 two. 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.

This elegant teacup and saucer set from FaithAdamsCeramics 

These amazing hand-painted Hogwarts shoes from CatherineLaPointe

This simple moon phase stacking ring set from DDFemme

This super stylish graphic map of Manchester (loads of other cities available) from FirewaterGallery 

This impactfully minimalistic solar system necklace from PrettyLittleEarth

Which of these is your favourite? 

Tuesday, 5 April 2016

A Love Letter to Technology

Technology is so convenient for all of us. You can buy things at the touch of a button (sometimes without meaning to) and you can compare prices on holidays in a few short seconds. I've always been a fan of technology, I love having the latest gadgets even if I don't *really* need them. But since my condition worsened, I'm not sure how I would live without my tech anymore; it helps me out in so many different ways and makes my life so much more manageable. There are so many different types of technology nowadays, but these are the key bits that really help me out. 

When I moved back home, I moved sans laptop. Starting to blog, and starting to look for a job, made me realise I could do with having one. There's only so much you can achieve on a tablet and only so many times you can borrow someone else's. It was pretty clear that I needed a lightweight option & looking at the market I realised this likely meant compromising on spec which I wasn't prepared to do, having done that with my last laptop to get a smaller, lighter version and resenting it the whole time I owned it (I ended up cathartically throwing its broken, useless ass in the bin when I left London). So I bit the bullet and I shelled out for a MacBook Air and I haven't regretted it once. Yes they're pricier in comparison to Windows laptops, but this is so lightweight I can hold/carry it with one arm without struggling or worrying I'm going to drop it, and I can keep it on my knees without it hurting my legs. And it's wicked fast.

As you've probably gathered I love reading and as I've talked about before, I've struggled since last July with holding books. As a leaving present my London friends got me a Kindle Paperwhite which has been totally fantastic as I can hold it with one hand and just swipe/press to turn the page. Not having to carry or hold a heavy book, or hold pages back, really helps on bad pain days. Plus I love the light, it's super nice to read on in the dark!

My phone is the thing I use most. I use it a lot for browsing online, and for using Twitter, because if my hands hurt it's easier to use a touchscreen than a keyboard. Also I'm totally obsessed with Neko Atsume. One of my favourite things about my phone is that I can use it to listen to audiobooks when I'm too tired to read, or when I'm struggling to sleep at night.

My iPad was my very best friend in London. I watched all my TV on it; both on Netflix and the SkyGo app. Now I have my MacBook I try and use that more, because the sound and picture quality is superior, but when I'm feeling bad nothing beats snuggling up with the iPad balanced on my knees. It's also really good for reading on when my hands are too bad to even hold my Kindle, because again I can balance it on my knees and I can swipe with my knuckle to turn the page.

Edit: My friends from London pointed out that the actual best thing about technology is that we can keep in touch. This is true, because without their support (and excellent gif usage) I wouldn't be doing as well as I am!

How does technology help you, if you're also chronically ill? If not, what's your favourite piece of tech?

Sunday, 3 April 2016

March in Review

March has been a mixed month. I've really been enjoying going to work, but it has left me tired and that has affected my social life and my exercise regime significantly. I had a really great weekend holed up at my boyfriend's house eating junk food and binge-watching season two of Daredevil which was much needed. 

Books Read in March:

The IT Girl - Katy Birchall
Lady Midnight - Cassandra Clare
Kindred Spirits - Rainbow Rowell
Jolly Foul Play - Robin Stevens
Tell The Wind and Fire - Sarah Rees Brennan

Favourite Book of March: Tell the Wind and Fire 

I'm really pleased with my reading in March, I wanted to read 5 books and I did it, helped by books from four of my favourite authors! I'm hoping I can surpass this and read 6 in April.


Books Acquired in March:

Lady Midnight - Cassandra Clare
Kindred Spirits - Rainbow Rowell
Jolly Foul Play - Robin Stevens
Rebel, Bully, Geek, Pariah - Erin Lange

A small book month, but I did get 3 books by 3 of my favourite authors and have already read them, which is good. I've never read an Erin Lange but this has been compared to The Breakfast Club so of course I had to buy it. 


Films Seen at the Cinema in March:

Hail, Caesar!
Deadpool (again)
Batman vs Superman

A much smaller film month, reflecting the fact that I've been so tired in March. I really enjoyed Hail, Caesar! which was a pleasant surprise as the Coen Brothers and I don't usually get along. I thought B vs S was better than the reviews have painted it, but still not great. Best thing about it was Wonderwoman and I think it would have been a better strategy to lead with this film, create the tension between Batman and Superman in it, then follow with their film. I was happy to see Deadpool again as I loved it first time around. 


Catch Up on This Month's Blog Posts 

In March I posted a Thank You to my Mum ahead of Mother's Day, followed up by my 6 Degrees post for Fangirl, which is a meme run by my friend Jim. I blogged about the frustration of mental fatigue, as well as sharing the first of my Etsy Addiction posts. I blogged about my probably unscientific and unorthodox ways of managing insomnia, shared my thoughts on the Marvel vs DC TV universes for the release of Daredevil, and blogged about being back in employment for a month. 


It's nice that the evenings have been getting lighter now the clocks have gone forward, I'm hoping the weather will improve a bit in April! My most anticipated book of the year, The Raven King by Maggie Stiefvater finally releases this month after several delays and I can't wait to read it. I'm also really looking forward to Captain America: Civil War right at the end of the month; I've booked midnight showing tickets! I have a good friend coming to visit for the day, followed by a weekend away at the home of some family friends. I'm hoping April will be a good month and that I'll get more used to being in work.