Traditional v complementary therapy for fibromyalgia

What a dreary start to 2017. It’s been cold and wet, and I just want to curl up on the sofa in my Christmas trousers (that’s right, I have Christmas trousers), watch films and eat everything in sight. In fact, that’s exactly how I’ve spent most of 2017 so far and I’m starting to wonder how much causal weight gain is acceptable before I have to start watching my carb intake.

As you can tell, I haven’t really got over December. A month that is usually full of Christmas parties, excessive eating and late-night socialising was spent wedding planning, dieting and trying to get as much sleep as possible. It was wonderful and I wouldn’t change it, I just think I should be allowed to start the year with a bit of Christmas carry-over.

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Me, my sister, and our excellent Christmas trousers.

For those not in the know, me and R tied the knot on New Years Eve in a simple but beautiful ceremony, then partied our way in to 2017 surrounded by friends and family. I’ll likely blog about it at some point but I thought I’d kick off 2017 by sharing some tales about weird health experiences. Bear in mind that when you’ve finished reading this story I’m going to ask you: what would you do?

Let’s start at the beginning. At the end of last year I had just come out of a long and painful flare and I was trying not to rock the boat before the wedding, but I developed some excruciating arm pains in the last few weeks of December and needed to do something – anything – to sort myself out. In a last ditch attempt to ‘fix’ myself before the wedding I searched online for a local physiotherapist, hoping that some last-minute treatment would do the trick.

The physio I ended up seeing was lovely. A middle-aged woman with a kind and caring manner, she welcomed me in to a treatment room based at my local GP surgery  and I instantly warmed to her. However, she quickly explained that whilst she is a qualified physio (and let’s remember that’s what I asked for) she also practices esoteric therapy and it is her belief that fibromyalgia can be cured through this emerging complementary therapy that links physical pain to our emotions.

She didn’t ask me very much. I told her about the wedding, about my job, and explained my understanding of fibromyalgia. I explained my need for some short-term pain relief that would help me get through the festive period, but acknowledged the need for a more long-term view of pain management. I told her my drugs weren’t working (her response: “that’s because the drugs are for physical issues, and you don’t have a physical issue”) and told her my arms were particularly bad (her response: “our arms are where we hold our anger and frustration, so I imagine there’s some feelings you’re keeping bottled up inside”.)

She asked me to lie down and rubbed my arm with a soothing ointment. She asked me to close my eyes and, for about half an hour, she talked me through mindfulness exercises interspersed with suggestions that I was holding back anger or frustration in relation to my wedding – likely because people were trying to take over and I wasn’t standing up for myself. An interesting approach to physiotherapy if you ask me.

I was clearly looking sceptical (when am I not?) because, at the end of the session, she told me that she may not have got everything right (apparently: “esoteric therapy is a bit like fortune telling, you have to guess your way through at the beginning”) but over time she was confident she could reduce and relieve my pain.

I told her three things. Firstly, that I do not hang on to anger and frustration. I am a communicator and if I was unhappy with things in relation to the wedding I’d be talking about it. Secondly, that I have attempted mindfulness many times and would like to keep attempting it as I do recognise the benefits, I’m just not very good at it. (She told me esoteric therapy wasn’t mindfulness but, from what I saw, I respectfully disagree.) And finally I told her that I wholeheartedly support complementary therapy and I completely agree more that you can’t separate the mental from the physical, I’m just not sure esoteric therapy is for me.

I left the session feeling mixed emotions. She told me – or I told her, I can’t remember – that my approach to coping with pain is to metaphorically hold my breath and rush around doing as much as I can, buzzing about and squeezing things in knowing I don’t have long before the next flare. I have known for eight years that this is not a sustainable way to cope with pain. But when you ask to see a physiotherapist and that person tells you you’re in pain because you won’t admit you don’t like the flowers your mum wants at the wedding, you start to feel aggrieved at paying that person £55.

But I couldn’t deny one thing. My arm felt better.

It’s very possible that my arm felt better because it was the first time in weeks I’d lay down and rested – with the added bonus of someone gently massaging my arm. But maybe there’s also something to be said for stopping all medication, focusing the mind and changing behaviours.

I truly believe the worst thing about fibromyalgia is the lack of medical support. I consider myself a well-informed chronic pain patient, and yet I have no idea how best to treat my condition. Every time I ask for help I’m told I’m doing the wrong thing and I should try something else, but it’s all down to individual opinion. It’s exhausting and confusing and quite frankly, my health and wellbeing shouldn’t be reliant on my trust and judgement of the people trying to sell me stuff. That’s not how healthcare should work.

So let’s go back to that original question; what would you do? I’m working on these three options:

  1. Make another appointment. She was a lovely lady and, even though her view of pain medication was somewhat dismissive, she may have a point about behaviours and emotions. It’s worth digging deeper.
  2. Don’t go back. It’s exhausting to try every single type of therapy that comes my way. She used her physio qualification to lure me in, only to flog me a story about anger being stored in my arms. That’s not what I asked for or paid for. But if not this, then what next?
  3. Esoteric therapy is the next big thing in chronic pain management. Definitely go back, this woman knows what she’s on about.

Is there a fourth option I’m missing? Thoughts appreciated folks; what would you do?

New year resolutions for 2017

I wasn’t going to do this, but I can never ever get through January without thinking about what I want to stop, change or improve. I roll my eyes at myself for giving in to such a generic tradition, but I always end up coming back to the fact that resolutions are probably, fundamentally, a very good thing. There is nothing wrong with trying to be better, trying to be happier, and striving to get the most out of the year ahead so I figure why the hell not? Let’s do this.

Last year I stuck to three very simple resolutions: keep some weekends free, listen to more podcasts, and read more books. I figured if I achieved those things I’d be well rested and my mind and body would be enriched.

I read more books and loved it, but I listened to precisely zero podcasts which quite frankly is embarrassing. However, perhaps most importantly, I can confidently and proudly say that I kept many weekends free, and it was wonderful. I had the easy excuse of wedding planning which meant I didn’t have a lot of spare time, and meant the last quarter of the year was pretty much me and R at home chilling together. This year I don’t have that excuse but I’m determined to keep the same resolution because it did me the world of good.

(Note – so far, I’ve failed. January and February are fully booked and March is half way there. Probably need to burn my diary.)

2017

This year I’m going to jump up to five but I reckon they’re all very doable and very sensible and will obviously make me and my life super brilliant.

#1 – Spend money on experiences, not things. It’s the year of the honeymoon and it’s the year of clearing crap out of my house. I want to focus on travel and food and taking care of myself, rather than another basket of Asos stuff I don’t need.

#2 – Keep some weekends free. It’s time to go back to basics and start blocking out one weekend each month. One weekend for pyjamas and crap films, for massages and takeaway, for sleep and self-care. I’m excited about it already.

#3 – Stop watching Question Time. For those not in the know, Question Time is a BBC political discussion show and it drives me MAD. It’s on 22:45 so we normally watch it in bed, which means I get angrier and angrier watching lying politicians and bigoted audience members and by the time it ends I am too frustrated to sleep. So no more.

#4 – Send birthday cards. Stationery is my thing. I love notebooks and cards more than many other things, and I am always so touched when my dear friends make an effort to send me beautiful birthday cards – and yet I never remember to send them out. This is the year that all my friends will receive beautiful cards; it’s going to be great.

#5 -Sort out my health. Don’t worry, I’m not expecting to cure chronic pain this year, but I think it’s time for a new approach. Mine isn’t sustainable and as much as I like to think I’ve got it sorted, I know I haven’t. This year I plan on trying a few new things and being as healthy as can be.

What have you got planned for 2017?

Why I wish I’d never started my blog 

There are some things that, once you start, you can never stop. Like that car finance deal I signed up to which means I will be buying cars from the same garage for my entire life, or that one tattoo that led to two which I know will lead to three or four, or crystal meth, or blogging.

That’s right. I just compared blogging to being a crystal meth addict. I guess based on that it’s safe to say me and my blog are in a bit of a weird place at the moment.

When I started this blog, I was bored. I was bored and frustrated on a Saturday afternoon and I thought ‘blogging sounds fun, let’s give that a shot’. It was fun for a week or so, but then I thought it was a bit cringe and should probably stop writing it… but by then it was already too late. It was out there. People had seen it. How and why I hadn’t contemplated this sooner I’ll never know. People had seen it, and people could and would continue to see it. And not the people you want to see it, but people like that girl who hated you in high school who Googles you twenty years later and then laughs with all her mates that you’re still a nerd, or the trendy colleague at work who was just looking for your LinkedIn profile but has somehow found a play-by-play of your anxiety meltdown in 2009, or the person who knows you through a friend and wonders why you share photos of a walk down the canal like you think your David Attenborough. These people are seeing it.

And you can never go back from that. That tiny moment when you were bored and frustrated has led to a world of entrapment because you hit publish and now it’s live and there’s nothing you can do because, THE INTERNET.

I can’t delete my blog. Sure, I can stop writing it and delete the account but those published posts are still out there, so I guess if I can’t delete it then all I can do is improve it. All I can do is hope that by adding to it and reviewing it, I’m somehow making it better. And you know what? I think I am. This may not be the best thing you’ve ever read but trust me, it’s better than what I was saying three years ago. I know because I’ve reread those early posts and died inside, so you can trust me.

Oh but don’t worry, the irony is not lost on me. I know in three years time these are the posts I’ll be cringing about whilst I think the 2020 me is a genius. I know that, but  I’m stuck in the bloggersphere and I can’t get out.

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You’ll be delighted to know it’s not all anxiety and regret. In fact, if your new year’s resolution was to start a blog and I’ve just destroyed your dreams, you should know that it’s also one of the most wonderful things There are the comments from strangers who thank you for your strength and humour, the tweets from regular readers who are becoming friends, the private messages asking for advice and feedback, and the brands and companies who want to work with you because you speak their language. All of these things, all of you who engage with me every day, you are the people who make me grateful I hit publish that day. Grateful that I took a chance, didn’t over-think it and had the nerve to say what I wanted to say. You’re the people I blog for.

But on occasion, after a long week when I’m tired and weary and a little anxious, I stare at this blog and I’ve got to ask myself: what the hell was I thinking?

The 50 TV series you really should be binge-watching

Binge-watching is my thing. Surely it’s everyones thing, right?

For many years I thought I liked to spend hour after hour watching episode after episode of something because I am lazy – and that’s definitely part of it – but I recently watched a programme where a woman with a tumour on her spine talked about the importance of TV in coping with limited mobility.

It got me thinking. Whilst feeling emotionally attached to the lives on screen may seem sad to some, film and television play a huge role in the lives of the chronically ill, the elderly, the socially awkward, the physically challenged, and many others. The arts are important and I don’t feel like something has to be award winning, critically acclaimed or particularly profound for it to be enjoyable, supportive and meaningful. (This is me justifying my love of shit TV here. Can you tell?)

So I thought I’d kick off the new year by sharing my top 50 favourite TV series with you. It sounds like a lot, but this was surprisingly easy – which is either a massive achievement or a huge life failing on my part. Take it as you will. Some of these are what I call “good shit TV” whilst others are truly excellent; you can be the judge. In no particular order, here we go:

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The Sopranos – Image via E!

#1 The Sopranos. Follows family-man Tony Soprano managing his family and the mob. The final episode is one of the most frustrating finales I have ever watched.

#2 The Night Of. A Netflix original about a guy who’s arrested for committing murder. The evidence is clear, but he swears he didn’t do it. I was hooked in the first five minutes.

#3 Breaking Bad. Chemistry teacher turned crystal meth dealer. What’s not to love?

#4 The Fall. If only for Gillian Anderson. But also, a good BBC psychopath drama.

#5 Veronica Mars. If you love high school drama (who doesn’t?) then this is for you. School student turned private detective. Genius.

#6 Friday Night Lights. Again with the high school drama. American football, high school relationships, and the best power couple you’ll ever see on screen.

#7 Freaks and Geeks. Did I mention I love high school drama? This is all about the outcasts at an American high school, and the difficulty that is your teenage years.

#8 The Following. It’s not that great, but it’s got Kevin Bacon in (that’s a good thing guys) and follows FBI agents trying to catch a serial killer. It’s good shit TV, trust me.

#9 House of Cards. Another Netflix original. Great cast and perfect if you suspect every politician is completely corrupt, as I do.

#10 Pretty Little Liars. I got through seven series of this. It’s terrible and ridiculous (but completely addictive) and follows four high school girls looking for their friend’s killer.

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Greys Anatomy – Image via Wikipedia

#11 Greys Anatomy. Obviously. Because it’s Greys, and Greys is brilliant.

#12 The Wire. It took a while for me to get in to this but once I did, oh my. Five intense series following the police and drug scene in Baltimore.

#13 Arrested Development. Such brilliant comedy. This series follows the dysfunctional Bluth family and brings with it some incredible one-liners.

#14 Sherlock. Sherlock Holmes is obviously a classic, but with Benedict Cumberbatch and Martin Freeman it is so very good.

#15 Friends. It never gets old.

#16 Sex and the City. Samantha, Charlotte, Miranda and Carrie got me through my university days.

#17 Orphan Black. Clones. And some great dry humour.

#18 Girls. The modern day Sex and the City but, some would argue, better.

#19 The Walking Dead. Zombies. Series 1-3 are great, but I gave up after that. There’s only so much running from zombies, killing zombies, hiding from zombies I can do.

#20 Fargo. I preferred the film, but still worth a watch.

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The Americans – Image via The Independent

#21 Dexter. Serial killer who only kills bad guys. It’s good shit TV except for the final episode which is RUBBISH.

#22 The Killing.  Danish series following a murder case day-by-day. They made an American version as well, which is also good. Watch the Danish one first though.

#23 The Americans. Oh I absolutely adore this. KGB spies fitting in to American society.

#24 Mad Men. One of the best. Follows the lives of advertising executives in the 1950s and 60s. Sustained its brilliance for an entire seven series.

#25 The Shield. Corrupt cops running the strike team in LAPD. Horrible and excellent.

#26 The Office. Brilliant British comedy with a good little love story to boot.

#27 The Missing. Follows the investigation of a child’s abduction. It’s good.

#28 Veep. Julia Louis-Dreyfus as Vice President of America. Genius.

#29 Peaky Blinders. Gangster series set in Birmingham in the 1920s. Gross and brilliant.

#30 Happy Valley. British crime drama set in Yorkshire. Gritty, excellent and not at all happy.

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Happy Valley – Image via Radio Times

#31 Broadchurch. Olivia Coleman and David Tennant, two of my favourites. Police drama about the investigation of the murder of a young boy.

#32 Cold Feet. This will forever be one of my absolute favourites. If Desert Island Discs was about television, this would be one of mine.

#33 Jessica Jones. Comic book series, and the best one I’ve seen in a while.

#34 Stranger Things. Another Netflix original starring Winona Ryder, set in the 1980s and based on strange things that start happening when Winona’s son goes missing.

#35 Community. American comedy about an unlikely group of friends at a community college. Funny funny funny.

#36 The West Wing. Politics, dry comedy, Allison Janney and Rob Lowe. Thumbs up.

37 #The Returned. Set in a small town where people who previously died in a coach crash return after many years have passed.

#38 Parks and Recreation. I adore Amy Poehler and I adore this comedy series. Felt like I’d lost my friends when it ended, but that’s because I’m a bit sad.

#39 Line of Duty. A BBC police drama about the department that investigates corrupt officers.

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Parks and Recreation – Image via Huffington Post

#40 The IT Crowd. Three hilarious people who make up the IT department, based in the dark basement of the office block. Brilliant funny brilliant

#41 The Hour. The BBC launching a new cultural affairs programme in the 1950s. Strong cast, strong story line.

#42 Lost. Many people felt the Lost writers’ had lost their way by the end of series two but I remained loyal and loved it from beginning to end.

#43 W1A. Set at the BBC headquarters and follows a team who have been put together to redefine the values of the BBC. Hilarious – especially if you work in an office.

#44 Better Call Saul. A spin-off of Breaking Bad and so much better than I ever expected. I am wary of spin-offs but this was so worth it.

#45 Orange is the New Black. Set in a female prison and centered around a slightly annoying prisoner, Piper. But the other inmates make up for her frustrating qualities.

#46 Love Hate. Gruesome, gritty series about gang life in Ireland. Not one for the faint-hearted.

#47 Ally McBeal. Quirky series from the 90s about a group of unconventional lawyers. Made me fall in love with Barry White and yearn for unisex toilets to dance in.

#48 iZombie. A twenty-something girl is turned in to a zombie, gets a job at a morgue to secretly eat brains, but ends up ‘seeing’ how murder victims are killed. Outstanding!

#49 Search Party. A group of self-absorbed twenty-somethings start looking into the disappearance of someone they loosely knew at college. I like it a lot.

#50 The OA. Another Netflix original and the latest must-see series. Gripping and emotional and beautiful throughout. One of the best on this list.

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The OA – Image via Film

The end.

*Takes a bow*


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The fibro symptom that scares me most

If you suffer from chronic pain, you’re used to suffering from a myriad of symptoms. One day to the next, you experience something different to the day before and you adapt and respond as necessary.

Pain doesn’t scare me, fatigue doesn’t scare me. Numbness, heart palpitations, migraines and nausea don’t scare me. But one thing does. One fibromyalgia symptom makes me so uncomfortable and nervous that I feel scared and a little sad about my health. Even though I know that fibromyalgia isn’t a degenerative condition, there’s one thing that feels like it’s deteriorating. My driving.

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Image by Realizes Tumblr

I’ve been a driver since the age of 17. I always wanted to drive; as a kid I had a toy steering wheel which could be stuck to any wall or door in the house, I played bus driver all day long, and I remember sitting on my parents lap and holding the wheel as the car crawled down the driveway to a stop. When I turned 17 I got driving lessons for my birthday, and as soon as I passed my test I bought a car for £100 from one of my teachers at school. It was a heap of junk but I didn’t care. It was mine.

I’m now 32 and I just don’t understand people who can’t drive. I don’t care how good your public transport network is, why would you not want to drive?! I love the flexibility, the freedom, the options. I love nothing more than driving; it’s never a chore, it’s always a joy.

Last year my love of driving disappeared. It was becoming more and more painful and I eventually admitted defeated and accepted that after ten years of driving a manual, I could no longer cope with changing gear. My pain was too bad and I spent too many days unable to control my car. I gave in and bought an automatic, expecting to hate it, but it absolutely changed my life. I rediscovered my love of being in the car, and I went back to driving at any chance I got.

Then, last year, I was busy at work and doing a lot of driving. It was starting to take its toll and I had a series of scary moments where I fell asleep at the wheel; twice on the motorway and once on a country road. All three experiences scared me and after a while, I realised I could no longer commit to a three hour car journey. It happened a couple more times before I eventually accepted that an hour is my limit – any more and I just can’t be sure I’ll stay awake.

Recently I’ve been pretty proud of myself. Once a little girl racer I have slowed down my driving, I’ve stopped driving long-distance and I only ever drive automatics. I like to think I’ve worked with my illness, rather than against it.

But last week, I was driving at night and I felt a new level of fear. It was dark and raining and for third time in a month-or-so, I couldn’t focus on the lights around me. I wasn’t sure what I was looking at, and I swerved as I thought a car was coming in to the side of me at high speed. It turned out to be nothing more than a reflection but for a moment my heart stopped.

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Image via liofirm

 

I thought nothing more of it until it happened a couple more times; once after a long, hard day and once in extreme rain and bad weather. I justified the confusion as exactly that – bad weather and fatigue, but deep down I feel like something just doesn’t feel right.

I wrote this article a few years ago which looked at whether or not fibromyalgia is a progressive, degenerative condition like Multiple Sclerosis. Science says it’s not, but sometimes it feels like things are getting worse. It feels like some of the symptoms are less manageable than they were, and that can be difficult to cope with.

Given the choice I’ll always choose to drive instead of drink. I’ll always volunteer to be the driver on group holidays, and I love driving in challenging conditions. The majority of the time things are absolutely fine and I’m still as confident as I always was, but I know I need to keep an eye on it. I need to be confident that it hasn’t got any worse.

I like to think I can cope with most things but of all the things that fibromyalgia can throw at me, I’m just hoping it doesn’t take away my independence.


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Homemade blackberry vodka – part two

A few weeks ago I told you I went blackberry picking so that we could make some bramble vodka. This week I thought I’d share the delightful, deep purple mess that we made and the recipe that will give us some delicious vodka treats on New Year’s Eve.

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You will need, roughly:
– 500g blackberries
– 120g white sugar
– 1l vodka

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Add all three ingredients to jar or bottle that can be tightly closed. Store in a cool, dark place for as long as you possibly can. We stored ours for three months.

Slowly turn the bottles/jars at least once a week, making sure that the blackberries are able to move around as you turn.

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As the weeks went by, the liquid turned a darker colour and the sugar fully dissolved.

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After three months, we took the vodka from the cupboard and prepared to serve it in to 50ml shot bottles ready for wedding favours.

We placed a sieve and a sheet of muslin cloth over a large bowl, and poured the vodka into the sieve.

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The liquid very slowly passed through the muslin, leaving us with a beautifully pure and sediment free blackberry vodka.

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Using a small jug and plastic funnel, we filled each of the shot bottles and wrote name tags for each guest, ready to tie around the bottle necks.

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The bottles look so cute, and I think they’re the perfect winter wedding favour. DIY weddings are bit daunting to a girl like me, who far prefers to throw money at a problem – money I don’t have, I hasten to add. But the work on these favours has been spread out over three months so is entirely manageable, the vodka tastes delicious and I’m really glad to be able to add a personal touch to our wedding.

Sadly (or gladly) we made far too much, so I thoroughly enjoyed curling up this evening with blackberry vodka on ice, accompanied by several puff pastry cheese straws and an evening in front of Home Alone. Adulting at its best.

If you didn’t see last year’s sloe gin recipe, check it out. It was equally delicious.

Fibromyalgia advice column

Long serving and loyal readers will know that once a month I write for New Life Outlook (NLO), a health website that provides advice to readers on coping with chronic pain. I’ve recently decided to stop writing for them because, after publishing 50 articles in the last two years, I feel like I’ve achieved my goal and come to the end of my journey with them.

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A photo of a train station. Geddit? Trains, journeys… *ba-boom*

My blog has always been a space for talking through the many elements of chronic pain, sometimes coping and sometimes struggling. It’s also a place I like to be a little sarcastic and a bit reflective. My articles for NLO by contrast (at the request of the NLO team)  are about giving advice on the wide range of challenges that fibromyalgia sufferers face. Happily (or sadly?) nothing dies in the world of the internet, so my articles will no doubt float around and continue to haunt me.

For now, I thought I’d celebrate my time with NLO by posting some links to some of the most popular articles I’ve written.

  1. Managing migraine is hard enough without coping with fibromyalgia as well. Here I share tips for coping with chronic migraine.

  2. Fibro sufferers often ignore new pain, brushing it off as ‘just another symptom’. This article explains why you shouldn’t.

  3. Apparently lots of fibro sufferers struggle to manage their medication and side effects, so I gave some advice on what I’ve learnt in the last eight years.

  4. If you’re a new fibromyalgia sufferer, this one’s for you. This article gives you advice on understanding your tender points and how they’re used in diagnosis

  5. This one is a simple tip to the fibro-sceptics: 10 things you shouldn’t say to fibromyalgia sufferers.

  6. Fibro sufferers are told by medics that our condition is not degenerative or progressive, but sometimes it’s hard to agree. Here I discussed the possibility and how to cope with the issue.

  7. Fibro fog is a symptom I don’t discuss very often on this blog, mainly because it’s the one that worries me the most. Cognitive issues associated with fibromyalgia can be tough to cope with, so I wrote this post on how to cope.

  8. Ever wondered if you’ve been misdiagnosed? I think I’ve considered that about 1,450 times since 2008, so I wrote this post on how to cope with that doubt.

Enjoy!

The good in 2016

Ask anyone and they’ll tell you 2016 has been a terrible year. It all kicked off with the death of David Bowie on 10 January, shortly followed by the deaths of Prince and Alan Rickman. Jo Cox’s death shook the political world in June and shortly afterwards Brexit happened, and then Trump. It has all been a lot to take, and many are hurrying on the end of the year so that 2017 can be the start of happier things.

But this year has not all been doom and gloom. In fact, it’s included some pretty wonderful moments and I feel the need to take a moment and reflect on some of the good. It’s important to celebrate good things when they happen, and not feel guilty for enjoying those happy moments. So with that in mind, here’s my year of good…

I started my new job in January and discovered a true love of the railway. In fact, for the first time ever I realised what it really felt like to love your job.

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In February we moved in to our very first country cottage, and I got to experience slow living at its very best. The pond, the greenhouse, the garden… it was all part of our dream home and it’s definitely living up to expectation.

In March we decided to get married and surprised all our friends with invitations in the post having spent weeks making all the arrangements in secret.

We went glamping in April and I walked eight miles in the South Downs. Eight miles!

In May one of my best friends got married, closely followed by another in September, and in between that my Godson was born in August.

I survived festival season in June when I popped over to Porto for Primavera, and we also spent a couple of days in Florence at the end of a beautiful Italian wedding.

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Sadly September, October and November were destroyed by an aggressive flare up, but through that I discovered that my new GP is very excellent and he encourages quick telephone calls when advice is needed but an appointment isn’t necessary. If that’s not good I don’t know what is.

Soon it will be December, which means Christmas dinners and party nights out, days spent out in the cold and nights spent warm by the fire. My sister comes over from Australia and my brother-in-law comes over from America, and our friends and family will join us at the end of the year to celebrate our wedding.

I have to say that despite the sadness and the stress and the many lows, 2016 has been a pretty good year full of some incredible highs. In fact, it’s one I’ll treasure forever.

I’ve got chronic pain and a wedding to dance at

The blog’s been a little quiet lately, for which I can only apologise. A long flare-up often leads to periods of quiet because, quite frankly, who wants to write about (or read about, for that matter) pain and sadness for a solid nine weeks?

Last week I decided I’d forget about the pain and write about whatever was going on in the world instead. Sadly, Trump happened and that was another pile of pain I couldn’t bring myself to write about. Instead I just cried and scrolled through a range of devastated posts online. I didn’t feel the need to add to the outpouring of emotion; everyone was already articulating my thoughts – and that in itself was somewhat comforting.

So how did I decide to fill the blog void? I decided to write about weddings! Hurrah! Because quite honestly, if wedding chat doesn’t cheer us up in times like this, what will?

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Image via Love My Dress

That’s how I feel about weddings. Even as a non-religious, non-traditional, non-bride, I believe nothing beats a good wedding. A few months ago I wrote this post about our un-wedding coming up next month, and at just seven weeks away it’s getting very exciting. For the past seven months we’ve been planning on Friday nights with takeaway, wine and the next thing on the to-do list. It’s involved nights of tasting wines, cheese, lemon tarts and chocolate tortes, and listening to our favourite tunes on repeat. Seriously, if this is wedding planning, I may have to do this again. (I joke. Kinda.)

There have only been two moments I haven’t adored; one where I decided my dress didn’t suit me about 413 times, and one where I couldn’t decide how to style my hair for six months. Then I reminded myself that things like dresses and hair styles were exactly why I didn’t want a wedding at all, and I promised myself at the beginning that these wouldn’t be the things I would worry about. I refused to become overtaken by cakes and flowers and dresses and hair styles – things that I just don’t really care about. I just wanted it to be simple and fun and so far, it seems to be going to plan. So after taking more selfies than any sane person should, I’ve just decided I look awesome in my dress and I will have excellent hair and who cares if I don’t. Not me. (Repeating that mantra whenever I start to doubt myself.)

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Image via Love My Dress

The Friday night planning continues and we surround ourselves by all the right people and all the good things, and it all feels pretty marvellous. But whilst one part of me is planning to make sure it’s the best party we ever have, the other part of me is planning to make sure I can be well enough to enjoy that party.

As a chronic pain patient of eight years, I’m well practised. Behind every day is a well-tested plan. I live each day knowing what to eat and when, what to wear, what to do and what not to do, and how many tablets to take and when. I pride myself on sticking to that plan – most of the time.

Even so, planning or not, wedding days are long. They’re emotionally and physically draining and I know that to last until the end of the night it’s going to take some small miracle. I’ll take a medicine bag with me containing all my essential pills and potions, and I’ve got lots of little things planned to help me out throughout the day. I guess beyond that, all I can do is hope for the best and pace myself. And I will. I really will.

Okay, I’ll try.


Fancy reading this later? Pinnable image just for you.

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The other side of chronic pain

I write about pain a lot. I wouldn’t be much of a chronic illness blogger if I didn’t. But in the last nine weeks, my body has been through the worst flare I have ever experienced. I have spent 74 days stunned to silence by the amount of pain in my body, whilst similarly marvelling at the amount I’ve been able to carry on as normal, despite everything being so much more difficult.

When my chronic pain symptoms flare, I often turn to the blog and write about all the feelings. I talk about sharp pains and dull aches, numbness and hypersensitivity, migraine and vomiting, but I rarely focus on all the other things that accompany physical pain. Now I feel like adjusting the spotlight and writing about the other side. Sadly, pain tends to dominate everything and so I haven’t been able to write for about two weeks – and this post has taken me about a week to put together.

When you’re living in a world of pain, there are certain things you do to get by. You cut corners wherever possible to make the day that little bit more manageable, and you indulge in the things you know will help. Over the past two months I’ve spent obscene amounts of money on taxi fares to avoid unnecessary walking or public transport; I’ve bought thermal leggings and long sleeve tops to try and protect my skin from rough textures and keep my bones warm; and I’ve had two aromatherapy massages to give my body a little TLC in dark times. In short, a flare up is expensive. I dread to think how much harder it must be for those who can’t afford a taxi or an indulgent massage.

In the last two months I’ve also drunk more wine and bought more comfort food, I’ve stopped any small amount of exercise I was previously managing, and all the things I know I should do have gone straight out the window as I just stick to the basics to get by. I’ve gained some weight and my skin’s deteriorated; I feel like it’s glaringly obvious that I am unwell by the lack of colour in face, the lack of effort I can be bothered to put in to my appearance and the nervousness with which I carry myself – prepared for a painful nudge by a stranger or over-enthusiastic hug from a friend. But, from what I hear, no one has been able to notice anything different. From the outside, everything is the same.

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I’m currently switching between three different medications, none of which are doing anything good. They’ve been responsible for my vomiting during a work meeting and vomiting on the underground (a new chronic pain life low), cancelling plans with friends and a full day in bed when I should have been eating roast dinner with my in-laws. At no point does this hellish concoction of meds dent the pain, but the ever-popular ‘let’s wait and see’ approach is advised by my GP.

I count myself incredibly lucky that I don’t suffer from depression alongside my flare ups. I feel slightly anxious about everything, but only in a slightly melodramatic sense – I worry a long day at work might result in my death. Something like that. It mainly makes me want to stay inside, wrapped up in a warm room of cotton wool balls until I feel strong enough to go outside again. Of course, that’s how I feel but it’s not what I do. What I do is get busier than usual, working in a different city one day to the next and making extra plans with friends every other day. Apparently I’m even more of a moron than usual when I’m in a flare.

Above the cost and the anxiety and the time spent with my GP, all of this is just exhausting and frustrating. Deep down, I know I’m not approaching it in the right way. Flares are a common part of the fibro cycle and as chronic pain patients, we’re used to them. Even so, grinning and bearing it and hoping it will pass is not the answer. We all know that. So today marks the start of a new approach; I will eat healthily, I will exercise mildly, and I will rest. I will rest at every given opportunity until my pain levels are manageable once again. If the meds happen to do their job during that time then, bonus.

Let’s wish me luck.