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.

image source (watch the video, it's excellent)

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. 

Read More

Rediscovering Manchester #3 Common Bar // Museum of Science and Industry

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. This is the third of my Rediscovering Manchester posts.

---

This edition comes with bonus Americans in the form of friends Lili and Sarah, who were on Study Abroad programmes until last month and who came to visit me for a few days. We headed to Common bar for food as they had good veggie options. Common underwent a refurb in early 2015 and has quite a minimalist, modern theme now, vaguely Scandinavian and there was definitely a nice casual, chilled out vibe to the place. 

I ordered deep fried pickles and fries with a side of soured cream. I know, I'm like incapable of ordering a proper meal anymore. It was super delicious though; the batter on the pickles lacked some colour but was nice and crispy and the fries were properly seasoned and delicious. There was enough of both that I had enough to share and felt full afterwards. 

I had a hot Vimto to drink, mostly so my American companions could try it. I forgot how much I like hot Vimto! I approve of any Mancunian eatery that has this fine beverage on its menu. 

I've seen so much about the cakes at Common which are made by a company called Blawd. Unfortunately I was a little disappointed with the selection on the day we visited; there were no brownies or doughnuts, clearly the day after a bank holiday is not the day to go. All the cakes had something I don't like (Coffee, cardamom and walnut, lemon, elderflower and white chocolate, carrot and courgette) which admittedly is at least part down to my fussiness. I ended up opting for a coconut macaroon (not to be confused with a French Macaron) which was fine, but coconut macaroons are never going to be groundbreaking. 

We then headed to The Museum of Science and Industry, which I haven't been to since I was a kid. We got a little lost and walked the long way there but it was nice to see a bit more of the city. I love the outside of the building because it's so industrial - perfect for an industrial city! The front part of the inside has been completely redone since I last went, and is an homage to the technical side of Manchester's history which I really liked. The back room is all about Manchester's textile history because of course Manchester and its surrounding areas had lots of cotton mills during the Industrial Revolution. I liked the interactive elements of this area, and the mill in the middle of the room is a nice touch--they have daily demonstrations which we sadly missed. 

We moved upstairs to the experiments room, which is the thing I remember most about from visits as a child. A lot of the experiments are actually still there, which was very nostalgic, though some are looking a little shabby now/weren't working. It felt a little sparser than when I was a child and was a bit more open plan whereas when I was a child there were lots of black partitions separating parts of the floor which I always really liked. But I'm also much bigger now, so naturally the space would feel smaller. We had lots of fun trying to solve puzzles and things. 

We also visited the Air and Space hall, which I always loved a child. Full of old planes and cars, the hall is full of Mancunian vehicular history such as the Ford Model T, built in Trafford Park, and Rolls-Royce, which started life in Manchester. 

Visiting the museum was such a trip down memory lane for me; my family went all the time when I was a child but I hadn't been back for well over a decade. It was sad to see parts of it looking a little worn, but great to see that it's still a fab trip out with a lot to offer. 

Read More

Everyday Struggles

One of the weirdest things, I think, about having a chronic illness is all the little everyday things that are a struggle, or impossible, to do, things able-bodied people probably never even think about. Here are some boring, mundane everyday things that I actually really struggle to do. 

1. Use a stapler - no really, I actually really struggle with this. I have to put my whole upper body into it and it usually leaves my shoulders really sore...

2. Plug in/unplug plugs - some are better than others. Those new Apple ones? The worst. I get really annoyed whenever someone unplugs one I need because then I have to try and plug it back in again. I have a couple of those old huge ones left and they're what I always take on holiday.

3. Touch my toes - I've mentioned this before, but due to my leg and back muscles tightening I've never been able to touch my toes. It's such a small thing that so many people can do really easily and I'm determined to overcome this.

4. Hold a kettle of water - unless it has like, only 2 cups of water in it this is really difficult for me and makes my arm shake, which is pretty embarrassing in the workplace...

5. Sleep well - not something solely limited to those with chronic illnesses, but I can probably count the number of refreshing nights of sleep I've had on one hand. It takes me ages to get to sleep, my sleep is restless, and I always feel tired and groggy when I wake up, no matter how many hours I've had. 

6. Wash my own hair - My arms get tired, my hands get tired, my fingers get tired, I get tired. I've recently switched to a sulphate-free shampoo which barely lathers and it's so hard to work with. I hate washing my hair so I do it as little as possible. 

7. Stay awake for a whole day - any day that doesn't feature a nap feels like such an achievement. I'm so exhausted from a poor night's sleep, a half day at work (I work 3.5 hours a day) and travelling to and from work that by the time I get home I absolutely need a nap - and that's without doing anything else like exercising or going to the cinema. Lately my naps have gotten so long I think they actually have to be deemed 'sleeps'. 

8. Chop anything - I can't really prepare any food; I can just about chop tomatoes, or herbs, but anything sturdier than that is off limits. Fortunately my mum cooks my meals for me so I can avoid this completely. 

9. Cut up my own food - like the above, not only can I not chop anything, I also actually really struggle to cut my own food. Especially if it's meat, or bread, or anything harder than a cooked potato. Coupled with my obsession with small, precise mouthfuls it takes me approximately twice as long to finish a meal as anyone else.

10. Sit still - I only recently realised how much I fidget when I'm sat down. It's so difficult for me to get comfortable, especially in a 'standard' seating position. As a result I'm constantly shifting, changing position, which makes going to the theatre (one of my favourite past-times) difficult. 

Read More

Oh, The Places I'll Go (I Hope)

I only really started travelling last year. I have anxiety about only a few things, but those things include: missing transport, getting lost, and big events. That pretty much sums up going on holiday. But at the end of 2014, I realised that I really wanted to focus on experiences, rather than things. Materialism wasn't making me all that happy, so I made a conscious effort to move into experience-driven purchasing, and a big part of this is holidays.

My boyfriend and I started small: a long weekend in Edinburgh. You get a train there, it takes 3 hours (from Manchester) you don't need a passport, no language barrier, your 3G works. We moved onto Paris in June last year: another train, this one actually shorter but with security and passports required. We caved and bought internet for Googlemaps after some navigating woes. I realised I really like going away. Since then, my boyfriend and I have been to Athens, I've been back to Paris with a friend and last month I went to visit a friend in Stockholm. My boyfriend and I have a trip to Berlin booked for October.

There are so many places I want to go, things I want to see. Here are some of them.

ROME

The reason Athens was our second holiday is that my boyfriend and I both love ancient history and myths. Going to see the Parthenon was a life goal for both of us and a really profound moment. So top of our travel list is Rome: all those ancient ruins, beautiful churches and buildings. Perfetto.

image source

BUDAPEST

They have a whole museum dedicated to Paprika, a beautiful cemetery and a park full of Communist statues. Plus, thermal baths. Budapest is definitely somewhere I want to go.

image source

JERUSALEM

My obsession with the ancient extends to Jerusalem, one of the oldest cities in the world. Also one of the holiest, and while neither my boyfriend nor I are religious, we're pretty obsessed with religious sites, buildings, atmosphere and Jerusalem certainly has plenty of all.  A friend recommended that I also visit Tel-Aviv, so it'd be great to combine them both!

image source

LISBON

Oldest. Bookshop. In. The. World. Nuff said, really. 

image source

NEW YORK

I'm a city girl and New York is the ultimate city. There's just so much I want to do/see here that I can't even begin to list things.

image source

COPENHAGEN

As you may have seen, I went to Stockholm recently and had a great time, so I'd love to experience more Scandinavian cities. Copenhagen is next on my Scandi list!

 image source

ST PETERSBURG

I’ve always had a bit of an obsession with Russian history, especially the Romanov era. Why St Petersburg? 2 words: Winter Palace 

image source

GIZA

My ancient fascination doesn't quite spread to the Egyptians, but who doesn't want to see the pyramids at least once in their lifetime?

image source

BRUGES

This one is mainly for my boyfriend, who is obsessed with going. However I did recently discover you can get a boat there from Hull and have a little mini cruise and I really like the idea of that.

image source

MARRAKECH

Marrakech has always seemed really exotic to me...I love the idea of wandering around the souks, drinking sweet Moroccan mint tea, visiting a Hammam, taking an excursion to the Atlas mountains. Bliss.

image source

Are any of these places on your travel wishlist>

Read More

Pain: A Definitive Guide to the Types of

One thing I, and I think most spoonies discover, is just how many different types of pain there are and how quickly you become able to classify them and figure out which types you can cope with and which you can't. Here's a guide to the various types of pain I experience on a regular basis.

The restless, 'if I could stretch far/hard enough this would go away' pain: I hate this one, because I always feel like I *could* get rid of it, I just *can't*. This is more of a discomfort than a pain, but it keeps me up at night and it stops me from concentrating on anything. It also causes me to roll around and complain a lot.

The warm 'I've done some exercise' achy pain: I don't mind this one too much. It's that kind of warm ache that comes from exercising, it almost feels natural, and I imagine able-bodied people probably experience this too (though I think it takes a lot less exercise to bring it on in spoonies!). 

The stiff and achy 'I've pushed myself too far here' pain: the one that comes from walking that extra mile, going to those 3 extra shops, staying out that extra hour, or even for using a mouse for 3 hours, or carrying a box for a bit, or writing for half a page, or watering the plants for 15 minutes..I could go on. It's the above pain, but worse. It feels unnatural and stiff and heavy and it's so uncomfortable and the worst thing about it is that you know you did it to yourself and you'll do it again. 

The soreness of 'please don't touch me there' pain: usually, in my case, this comes from the physio or my well-meaning boyfriend. It's a pain of realising that aside from feeling pain almost abstractly, if you press on actual body parts you get more pain. What fun. 

The dull ache of life: the pain I get for having the audacity to exist. The pain I'm in all day every day, at some level or other. The pain that, on a good day I can mostly tune out but that will never leave (except the very first day I took Tramadol, when I was literally in no pain for the first time in my life and it was glorious and weird). 

The spiky 'uh oh something's gone wrong' pain: the one you feel when you've twisted/knocked/sprained/partly dislocated something. It's sharp and just plan WRONG and it makes you stop suddenly and assess the situation in a tentative manner. It is your body saying no, stop, this hurts, I don't want to do this anymore. It's a pain I often get in my hips at the front, or in my wrists when I try to write more than a sentence. 

The sharp ache of an injury pain: if the above pain is during/immediately after an injury, this pain is during recovery. It manages to be both sharp and an ache in a paradox only possible in a useless body like mine. 

The discomfort of a locked/dislodged joint pain: this pain, again, is more of a discomfort but can easily graduate to all out pain. It's the feeling of a joint not quite in the right place, happening because my joints have the capability to end up in the wrong place. Easier to rectify in a naturally more mobile joint like the shoulder or ankle or wrist, it's a bitch in my elbows and knees which are hypermobile enough to screw themselves over, yet not hypermobile enough for me to manipulate them back. Of course. 

The crack of a sudden movement pain: usually follows on from the above pain, or comes from moving suddenly after being still for a while. It's that audible crack that makes everyone around you go 'oooh'. It doesn't always hurt, but sometimes if the move is forceful enough, or the joint has been locked for a while, it does and it can leave a residual ache in its wake. 

The cold, almost growing-pain-like pain: a.k.a my nemesis. This is my worst pain, my most hated. It starts in joints and it radiates out into the muscles and it is sheer misery. This is the pain that set my whole setback off, the pain I most often take painkillers for, the pain that if I get is almost impossible to fully get rid of. It feels like the growing pains I got as a kid, but worse and also cold. It's hard to explain. It's also my most irrational pain in that it usually doesn't have a cause (that I can discern). I hate this pain.

I had 'Pain' in my head the whole time I was writing this but I think that, unlike Three Days Grace, I personally would rather not feel pain than nothing at all. 

Do you experience any of these pains? Any additional ones?

Read More

MY ETSY ADDICTION #4

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 fourth. 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 cool set of notebooks designed like magic books from LiteraryEmporium 

This cute rainbow purse, perfect for LGBT Pride month, from PupTartHandmade 

This stylish and awesome 3D printed bowl from Lolibalolis

This adorable and nostalgic fortune teller brooch from OhGoshCindy

This adorably minimalist racoon greetings card from IvoryMintCards 

Read More

Embarrassing Illness?

Before my condition worsened last July, I spent my adult life feeling pretty embarrassed about it. No one had ever heard of Joint Hypermobility Syndrome, I wasn't very good at explaining it, and I often felt like I just left people with the impression that I was weak and a little pathetic. 

And I felt weak and a little pathetic. I could live a normal life, just not as well as everyone else. I had less stamina so long days and strenuous activity would tire me out, leave me feeling really ill. I couldn't carry 'heavy' things, which to me was most things, and I lived in constant, though largely low-level, pain. And without being able to explain this properly it did leave me looking weak. And a little pathetic. 

When I got worse, it was harder to hide. I was visibly in pain, I struggled with a lot more things and I took a lot of painkillers which I'd previously avoided where possible. "I didn't even know you were ill!" people said, and it was true, they didn't because I didn't like talking about it. 

The issue was that before, I didn't feel sick enough to justify telling people I had a chronic condition. I didn't even consider myself to HAVE a chronic condition. I felt like people would think I was being dramatic, given that I wasn't overly affected. So I got used to not talking about it. I made my own adaptions where I could and I avoided things I knew I couldn't do if possible, rather than explain why I couldn't do them. I put up with a lot of pain. I tried to keep a couple days with less activity every week to allow my body a break. I slept a lot on weekends to catch up. If I did talk about it, or have to tell someone, I would do it in a jokey way, laugh at myself. At my limitations. I refused to apply for help in exams at university, despite needing that support during my A Levels, because I didn't want to explain why I had it to my fellow students. 

In a way, getting worse has been good because I've been more open. I've told more people about my condition, I've explained it better. I've started this blog. I've outright said when I can't do things because of my health or my physical limitations, or I've said if I need adjustments. And I'm proud of that, because I am not a person that likes weakness and my condition before now had always made me feel weak. 

It's important to not be embarrassed about any health condition, illness or disability. They're part of who we are and have shaped our lives. If you don't want to tell people, for whatever reason, that's totally your choice, but please don't not tell people because you're embarrassed like I was. I've had a lot of support, and understanding since I started to be more open about it (though there will always be people that just don't understand) and I feel better in myself. And I've realised that my condition doesn't make me weak, it makes me strong. Strong because I muddle through despite it. Strong because I am fighting the limitations it's currently putting on my life. Strong because I survived 10 years with almost no support (though in hindsight, that was my pride talking and it was a bit of an error in judgement, all things considered). 

image source

Read More

Chronically Holidaying: London and Stockholm

I shared my tips for holidaying with a chronic illness just before I went away, and I wanted to post about my holiday in general, and also how I did with managing my own advice.

I started Friday with my train journey down to London, popping into my old workplace to see work friends and heading out for cocktails and food with them and other work friends who have since moved on. I haven't seen a couple of them since I left last October, so it was lovely to catch up with everyone and take advantage of 2 for 1 cocktails at a local pub! I then headed back to my old work partner in crime Becky's house to stay the night. We started Saturday with brunch at The Breakfast Club before heading to The National Theatre to watch The Flick, a play we managed to grab last minute tickets to that I was super excited to watch. It was excellent; set in an old one-screen movie theatre in Massachusetts with a cast of 3. Easily one of the best things I've ever seen on the stage, there was so much nuance to every performance. I highly recommend it. 

I spent Saturday evening with friends watching Eurovision! It was loads of fun, even if the entries were a bit...tame this year. Sunday started with brunch in Muswell Hill with my cousin, followed by cake and gelato in Soho with a group of friends. I headed back to some friends' house for pizza and a movie, before a VERY early drive to Gatwick for my flight to Stockholm. 

I've never flown by myself before and I was pretty nervous, but the whole thing was surprisingly stress-free, even less stressful than travelling with someone else, actually! I normally get horrific pressure in my head when flying so I'd procured some anti-pressure earplugs which I was testing out for the first time after a truly traumatic flight to Athens last September. They worked a treat and I seriously recommend them if you have the same problem!

I was met in Stockholm by my friend Frances who moved out there earlier this year with her boyfriend Paul, and stayed with them in their lovely apartment. I can't tell you how much more relaxing a holiday is when you're with someone who knows where they're going and what they're doing! We had a chill Monday which started, of course, with a fika break, followed by shopping and dinner and drinks, before settling in for the night. Tuesday involved a walk through the old town and a trip to the royal palace (which is super beautiful and very elaborate), some fika at the most adorably quaint cafe ever, and more shopping. Tuesday evening we headed out for an amazing dinner at Meatballs for the People. I was hesitant about meatballs, though keen to try a traditional Swedish dish, such is my holiday custom, and it was so delicious. I had beef meatballs with potato puree, pickled cucumber, lingonberries and a red wine sauce, and everything was so tasty and worked really well together. I wish I could eat it like, every week.

We spent most of Wednesday on Djurgarden, an island that is mostly nature and parks but also has the Nordic History Museum and, notably, the ABBA Museum. We had a really lovely walk along the water, taking pics and soaking up the sunshine, with an extended reading break and an ice cream break! We headed back to the main island for lunch and a walk around, followed by the biggest gelato cone I have ever had and another bask in the sunshine.

It was such a relaxing few days, wandering round Stockholm, taking in all the Swedish architecture and soaking up the chilled-out atmosphere: life there is so much calmer than in London! It's such a different way of life and I really appreciated a break that focused on actually having a break! My holidays are usually a stressful affair.

How well did I do at following my own advice? Not too badly, I don't think! I definitely paced myself better than I ever have before; there were a lot of sitting down activities (most of which involved eating, I did a lot of eating) and I had a couple of early nights (I even managed a few 8 hour sleeps, unheard of for Vacation Caitlin!). But mostly, I was helped out by all my friends. So many people let me stay in their guest rooms, or their own beds when they were elsewhere, which really helped. It's totally fine to stay on sofas and share beds for a few nights, but there's nothing like having a whole bed to yourself. People carried my suitcase for me, or stored it for me, or took it somewhere for me, which really helped as dragging/lifting/carrying suitcases really hurts my shoulders. Special shoutout to my pal Debbie, who was a total hero and drove me both across London and also to Gatwick airport at 4am. That is true friendship. And of course to Frances and Paul, who not only let me stay with them, but who entertained me for 3 days and were very respectful of my limitations and my need for extra-extended fika breaks!

However, despite having 3 and a half days to recover from my trip, I spent all of last week pretty ill. I had to take long naps, skip exercise, miss social activities, take a lot of painkillers and generally just felt pretty crappy. I'm not sure why I've had such a severe reaction; admittedly this has been my longest trip but it was also my most relaxing which I thought would balance out! I have nearly a week in London in July, including going to see Harry Potter and the Cursed Child (omg so excited), so I think I need to have a think about what else I can do to minimise the impact of my trip once I'm back home.

What do you do to pace yourself on holiday and to recover once you're back?

Read More