Friday 29 January 2016

The Power of Good Weeks

The week for which I wrote this blog post  was not a good week. It was, in fact, a very bad week. Not only did I partially dislocate my shoulder and spend the whole week in swimming-induced pain, but David Bowie and Alan Rickman died. I had a lot to cry about.

I was pretty much at the end of my tether and so thankfully, last week was a pretty good week. My new medication has been working well, I feel better and I have less muscle twitches. I took less painkillers. I had less pain from swimming and I managed to do 14 lengths in the same time as 10 the week before.

But the best part of my week was undoubtedly going down to London and spending time with friends. I stopped into my old workplace and it was so lovely to see everyone. A few of us headed out to a swanky gin bar with table service which was so lovely. My old work partner-in-crime Becky treated us to some gin. I had an amazing one with orange and rosemary (FIND OUT WHAT IT WAS, BECKY!) and sloe gin which I've never had before so I embarrassed myself by asking for it with tonic (appaz you drink it straight, who knew).

I headed over to my cousins' for a catch up and some pizza (biggest pizza ever) before crashing. The next day we headed to the British Library so one of us could do revision (my cousin) and one of us could look at the Alice in Wonderland exhibition (me). I met up with my friend Jim & we had a fab time in the exhibition and the rest of the BL, then headed to wander around London a bit,  find cake and bookshops and chat. He treated me to a book I was coveting (thanks Jim) and we parted ways for dinner. My cousin, my friend Debbie & I went to Franco Manca for more pizza (seriously, the best pizza ever and so cheap, go!) and then we met up with more friends at the Old Vic to see The Master Builder with Ralph Fiennes! It was pretty good - some line flubs with it being the first night - but overall very well acted and very funny.

On Sunday I went with some friends to William Curley for an afternoon tea. We used to go there for their dessert bar which sadly they've stopped, but the afternoon tea was delicious. I was the only one to finish all of mine #DessertQueen. Afterwards, we went to my friend Daphne's place for bookclub. Bookclub rarely involves talking about the book, rather chatting and playing games. We gave Pictionary a go which was hilarious and my team was victorious! I spent Monday morning travelling back home.

It was a fantastic weekend, it was so lovely to see everyone and be back in London. Going back does feel bittersweet, because while I love seeing people and doing London things, it reminds me that I can't do them all the time now.

So far this week has been pretty bad - I've experienced a level of fatigue that I haven't had for a while and I've had a lot more pain. But I'd much rather have a bad week as fall out for a really excellent experience, than a bad week for no reason. I feel less bothered, less affected by this week because I know it was totally worth it. And that means I can look forward to next week, which will hopefully be better, than wallow in the misery of this one.

Tuesday 19 January 2016

An Ode to Supportive Footwear

I have always struggled to find shoes. I have narrow feet that are also flat feet and ankles that aren’t really sure what’s in their job description. It is like a perfect storm of foot problems. As a kid I was always the one who had 2 pairs to choose from, if I was lucky, when buying new school shoes. At some point during my primary school career, I got these massive blue insoles that were made from plaster casts of my feet. While incredibly helpful, they made finding shoes even more difficult. At 15, I refused to wear them anymore and I carried on that way until I developed sciatica as a result of my terrible foot/ankle position, and a job that involved standing for 8 hours drove home how much pain the lack of insoles was causing. So I got more made. And I struggled with shoes again. When I got ill in July and had to wear my insoles full-time, I was pretty much down to one acceptable pair: some black leather chelsea boots. I thought we were getting along as best we could, until I started wearing my Dr Martens at the beginning of January. 

Back in September, I visited a Rheumatologist for the first time in ten years. The Rheumatologist had to conduct a physical examination of all my joints to determine what the hell was going on with them. As I result I was left feeling very sore and extremely unstable. For the first time since trying to do monkey bars as a kid I was genuinely convinced I might dislocate something. So I did the only smart thing I could do: I went home and I had a little lie down. I was browsing online and ended up on the Dr Martens site.  I had a pair of the slimmer DM  brogues (the ones without the yellow stitching) already which I’d had to stop wearing because they were giving me foot/calf cramps, and I’d shied away from the traditional boots because I thought the wider fit would make my narrow feet/ankles/calves look stupid. But I’d been coveting a pair of very expensive ankle boots for…I can’t remember exactly but quite a while, and on this day I discovered they were half price in the sale. “The universe knows it owes me one. This is my one” I thought to myself, so out came the credit card. (These are them boots). 

I started the DM-breaking-in process which, as anyone who has ever owned a pair of DMs knows, is rather painful. I decided there was enough pain in my life for the time being, so the DMs went back into their box. And in their box they stayed, until a couple of weeks ago when my friend Debbie embarked on a spontaneous trip Up North to come and stay with me for a few days. Being an ex-publicist, I put together an itinerary. Then I looked at my itinerary. It involved a lot of walking. Walking had, for quite a while, not been my friend. A simple trip to Asda, for example, caused me to injure one ankle, one hip and both knees. I was falling over a lot because my ankles kept giving up on life completely.

I knew I’d have a better chance of surviving all the walking I was setting myself up for if I wore the DMs. So I got them out of the box, I covered my feet in plasters, and out we went. And you know what? They were totally perfect. I’d obviously broken them in more than I thought I had, because with plasters on 2 parts of my heel they only rubbed a bit. The rubbing was totally worth it. My feet and ankles felt so supported that I felt confident walking for the first time in months. My ankles didn’t give way once in those 3 days and I did a lot of walking. And I had no injuries. Which was a) omg amazing and b) sad because it made me realise so much of my pain was caused by my existing footwear. I thought I’d made good choices with the chelsea boots. They fit my insoles, they supported my ankles, they had a 1cm heel. The Rheumatologist approved them. But apparently they were No Good. I can’t fit my insoles into my Docs, but even without them they are so much better than my chelsea boots.

We’re now a few weeks on and I wear my DMs every day. Fortunately I really like them and they match with my clothes. It’s hard for me to describe the impact they’ve had on my life. They might only be a pair of shoes, but before I started wearing them I was literally at the point that I would avoid walking at all costs. My exercise, which had been limited to short walks anyway, dwindled to nothing because I was too scared of hurting myself. My Docs have meant I don’t feel apprehensive about going out anymore. I do more things that require me to actually leave the house. I go with my mum to walk the dog. And I honesty believe if I hadn’t started wearing them, if I hadn’t managed those 3 days of tonnes of walking (albeit it with a Very Lot of painkillers needed), I wouldn’t have had the confidence, or the ability, to start swimming last week. And swimming is what I need to do to get better. So thank you, Dr Martens, for your slightly expensive but life-changing boots.

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Wednesday 13 January 2016

On Having To Be Realistic

This was going to be a post about how much I love my Doc Martens but in light of this week's events that will have to wait. So you can look forward to that one.

The approach I've always taken with my health is to have inward concern, but to try and project an air of flippancy and good humor, with occasional spurts of hypochondria. It is, I feel, the best way to avoid tears/anger. It means you can say things like "lol, I've had to take 24 painkillers a day for the last few days #hardcore" without crying over the fact that it's still taking you over two hours to get to sleep because of the amount of pain you're still in, or without really worrying about the state your liver/kidneys will be in at the end of this process.

I have, as my ex-colleagues and mother & boyfriend can attest, not quite managed to maintain this veneer in the past few months as much as I like to think I have. But nothing really drove home how utterly poor my health really is until after my first real attempt at exercise on Monday.

The Rheumatologist I saw back in London told me I needed low-impact but muscle-strengthening exercise like swimming, yoga or pilates in order to improve. Being a very excellent, albeit out of practice, swimmer already I naturally decided to try that first. I've put it off for a couple of months because I needed 'rest' but my ever patient mother eventually put her foot down and so we went swimming for the first time on Monday afternoon. "How many laps do you want to do?" asked my mother. "Oh, 20 to start with, I think" I replied airily, squeezing myself into the costume I haven't put on for nearly three years.

2 lengths later, I had to set a more realistic goal. "Maybe 10" I gasped, as I stood in the shallow end attempting to recover my dignity. I climbed out of the pool 15 minutes and 8 more lengths later, feeling slightly abashed at my lack of stamina but pleased I'd made the effort. Back in the changing room however, it really hit me. I was so tired. My muscles felt weak, jelly-like. I was shaking. I struggled to get my costume off and get dressed. My mum had to brush and dry my hair for me because I didn't have the strength or energy left. I also didn't have the strength or energy left to finish my reward of chippy chips for tea, either. "They'll go cold" my mum urged. 4 urgings later I realised she meant they'll go cold for when I give up and let her have the rest.

I took 6 painkillers. 4 hours later, I took 6 more. And 4 hours after that, at 3am, when I still couldn't sleep from the pain, I took 6 more. I woke up the next day after only 4 hours of sleep and I felt...okay, actually. Bit stiff. Mostly fine. 2 hours, 2 walks and 1 appointment later, it was Hell on Earth. My whole left side was sore. My right side was smug and gloating. I couldn't lift my left arm. I was so freaking stiff. My mum made me help unpack the shopping and then go for a half hour walk with her and our dog. "You're just going to stiffen up again" was her reply to my plea for a "little rest" first. It did help. But then I sat on the sofa and I spent all evening/night in pain/stiffness. My boyfriend had to help me undress for bed and not in a fun, sexy way. In a "I actually can't lift my leg high enough/reach forward enough to take my own tights off" way. All from 10 lengths. 10 measly lengths. 20 minutes of swimming, max.

Today, nearly 48 hours later, I'm still in a lot of pain. I convinced myself I partially dislocated my left shoulder (I have no idea, I've never knowingly partially dislocated something before, I don't know what it looks/feels like) and my muscle twitches are back with a vengeance. It's been *quite* difficult to type this all up.  And what am I going to do about it? Well since I first drafted this post I went to the GP & got new medication which should help with the twitches, but also I'm going to go swimming on Friday. Because despite all the pain and the awfulness, I've got to just keep swimming.

Sorry, couldn't help it. I'm going to go and have a little cry now.

Saturday 9 January 2016

2015 in Review

2016, for me, has to be a year of not looking back. Because back means missing my friends and work colleagues and my life in London.

But there were some bits, most bits, of 2015 that were truly excellent.  And so, as we near the end of the first full week of 2016, the week most people went back to work, I want to reflect on, in particular, some of the excellent media I consumed last year.

Books have always been a huge part of my life and in 2015 I read 90 of them.

Here are my favourites:

The Accident Season - Moira Fowley-Doyle
Six of Crows - Leigh Bardugo
Wolf by Wolf - Ryan Graudin
The Art of Being Normal - Lisa Williamson
This Raging Light - Estelle Laure
The Sky is Everywhere/I'll Give You The Sun - Jandy Nelson
The Potion Diaries - Amy Alward
Only Ever Yours - Louise O'Neill
First Class Murder - Robin Stevens
Demon Road - Derek Landy

TV is something I spend a lot of my life watching, especially so when I'm not feeling great. In 2015 I discovered and became obsessed with:
How to Get Away With Murder // Scandal // Supergirl // Agent Carter // Jessica Jones // Daredevil

2015 was the year I re-committed to cinema. I went 40 times. I went to see films I wouldn't necessarily see, films that weren't the latest in big franchises. I bought myself & my boyfriend Unlimited cards. My favourite cinema releases of 2015 were:
Star Wars: The Force Awakens // The Hunger Games: Mockingjay Part Two // Mad Max: Fury Road // The Martian // Carol // The Theory of Everything

What books, TV shows, films, were your favourites of 2015?

Monday 4 January 2016

New year, new blog

I used to run a book blog. I'd link to it but it's dead and I feel like dead things should stay buried. It's more respectful, that way. I stopped mainly because my computer broke and I booked a holiday instead of buying a new one. And then I got ill and so blogging pretty much became last on my list of priorities. So for 2016 I'm starting a new blog, which will talk about books but also about life with a chronic condition. And also probably some other stuff.

I was born with a condition called Joint Hypermobility Syndrome. A lot of people have hypermobile joints, sometimes called being double-jointed, and all it means is they can weird you out with a few party tricks. Or they make excellent athletes. People with JHS however, experience negative effects as a result of their hypermobile joints. These can include pain in both the joints and muscles, and fatigue. It's also often much easier to injure yourself. There's more details and a bit more medical info here. I was diagnosed with JHS aged 6, basically because various people noticed that I walked weirdly so I was seen by a Rheumatologist. My condition affected me in various ways throughout my child and teen years and some of this carried through to my adult life, which I won't get into here. But I was muddling along (sort of, mostly)  until about autumn of 2014.

Over the autumn, I began getting pain concentrated in my elbows and wrist and finger joints, which radiated outwards to the spaces in between. I'd had similar pain before but really only in my knees. It felt kinda like growing pains and it was really hard to ignore. It was also alarming because I rarely ever experienced pain in my elbows, usually only if I accidentally moved them funny. And I only got a lot of pain in my wrists and hands if I used them excessively i.e wrote a whole essay by hand (thanks, university exams) or scooped ice cream for 8 hours (thanks, cinema job). But this pain wasn't caused by anything outside of my usual activities which I'd been doing for well...ages. I tried painkillers and hot water bottles, I drove my colleagues (and myself) mad with the smell of Deep Heat. And then...I stopped getting the pains. So I shrugged and moved on with my life.

I think I knew, on some level, that I was getting worse, I'd been getting cramps in my calves and feet when I walked, and more pain than usual in my knees and hips. I went to the doctor and the doctor told me I was probably vitamin D deficient so to go and get a bloodtest which I didn't do because yes I probably AM vitamin D deficient but I knew that wasn't what was causing my issue. I was so not thinking about being ill that I went on holiday to Paris without taking any painkillers with me at all. And then at the end of the first day when I was crippled due to walking like 15 miles I remembered that oh yeah, I should have probably brought some Ibuprofen because extreme exercise makes me hurt.

And then a month after that holiday, in mid July, I was suddenly hit with those growing-pain-type pains all over my entire body. It was horrific. I lay on my bed and I couldn't move and I didn't know what to do. My boyfriend ran out for emergency Ibuprofen because lol, I didn't have any (are you sensing a theme here?) which helped a tiny bit but also not really. I had these pains all weekend. On Monday morning I got a GP appointment and I told my manager I couldn't come into work. The GP gave me Naproxen (like Ibuprofen but stronger) and referred me to Rheumatology. I went home and I stayed in bed for another 2 days.

A week later I went back to the GP because the Naproxen just wasn't working. I was given Tramadol which actually did work. I spent two months in varying levels of pain and with mounting levels of discomfort in my joints (they just felt wrong, it's hard to explain. Like they weren't in right, or they were in the right place but the wrong way round. Or missing a part that, on the plan, didn't look so vital but once the body is fully assembled you realise that actually yes, that part did need to go somewhere.) In September I saw a Rheumatologist who told me that I had a really shit body. Okay, he didn't. He told me that my muscles had weakened from the strain of doing the work that my joints were supposed to do but weren't able to do due to them being hypermobile. Like keeping me upright and other such important functions. My muscles were weak and tired and they'd had enough basically. It was better news than I had expected but it was also bad news as it meant I was going to have to work quite hard to sort myself out.

And so I made the decision to quit my job and leave my life in London and move back to Manchester. My family and my boyfriend are in Manchester and so my rehabilitation now comes with cheerleaders. I'm living back at home and I'm hoping that the change in pace in my life (working less, going out less, being looked after by my mummy) coupled with regular exercise and some physio will mean that, in about a year, I'll be healthy again.

I'll be charting my journey or whatever on this blog and also talking about things I like such as books and the theatre and going to the cinema and watching entire TV series in a day. I hope it'll be entertaining but not in a laugh-at-my-failures way and that I'll meet other people like me who live with chronic conditions and are trying to make themselves as healthy as it's possible to be.

TL;DR I was ill and then I got more ill. Now I'm back at home in Manchester trying to be less ill.