Fibromyalgia

A change in season, a change in pain

Is it possible to itch to death? I want to say yes. For the past few months it felt like I was holding my breath whilst I tried to get through Christmas, a wedding, and a particularly busy time at work. Now, as I start to exhale and adjust to the rhythm of daily life, I can feel my little quirks rearing their ugly heads.

Quirks. I prefer that word to ‘symptoms’ or ‘pains’ or ‘things that make me want to scream’.

My legs have been getting heavy, my neck’s been getting tight, I feel tired, and I am so itchy absolutely everywhere that I just want to stand under the shower for all of the hours in all of the days. The worst places are my armpits and my eyeballs. I wake in the night not sure which to itch first, so use one hand to itch my eye and one to itch under my arm – it’s like a disturbing version of that game where you pat your head and rub your belly at the same time, except I’m trying not to gauge my eyes out. All this when all I want to do is sleep.

img_20170208_223631_063

 

The change in season always marks a change in my pain, but this month it’s also having an effect on my ability to mentally focus.

I’m curled up on my sofa in my leggings and house cardi (a cardigan so comfortable but so old and ugly that it can never be worn in public), the fire is roaring and I have a toasted, buttery, hot cross bun on the plate beside me – my favourite seasonal snack. It’s the perfect picture of calm, relaxation, and rest – a hygge dream.

But in my mind, oh… my mind… it feels like there is so much to do. There are things to clean, buy, fix, paint, tidy, read. Everything needs something doing to it, none of it is actually that important and so all of it feels pointless and pressing in equal measure.

Lists are my friend and so I figure the best approach to this madness is to create three columns. 1) The jobs that need to be done like install the cat flap, get the cats micro-chipped, sort out my repeat prescriptions; 2) The jobs that I want to be done, like framing and hanging pictures, painting furniture, sorting through my wardrobe; and 3) The things that are not even necessary, but they’re taking up space by with that nagging feeling that makes me search for answers in the most ridiculous places, asking myself questions like, what should I do with my hair? Do I have the right clothes for my holiday? What am I reading after my current book?

None of these things are big things, obviously, but each thought – regardless of the column it sits in – takes up space in my mind. And when my mind feels like it’s getting smaller at the same time these things are multiplying, it makes for a challenging time.

img_bmfhv3

Last weekend we were out in the garden for the first time this year. The weather was mild and we were able to potter together as we pulled up weeds and cut back last year’s dead branches. This pop of colour was the first sign of Spring, and a good reminder that beautiful, simple things appear amongst the chaotic overgrowth.

I’m going to have an early night and try to work out what on earth I’m blogging about this year. I feel like it would be nice to have a bit of a plan for 2017, if only so that you could decide if it’s worth sticking around. So far I can tell you this corner of the internet will include a write-up of our three weeks in Canada, some thoughts and pictures from our wedding, coping tips for fibro flares, and no doubt a fair few activities for those looking to lead a life less physical. Hang on in there, the fog will clear and it will be Spring before we know it.


Pin now, read later.

change1

How to be a morning person

I’ve never been a morning person. Not that I’m much of a night owl either. I tend to just bob around in some kind of permanently tired state, thinking of how good it would feel to curl up in my pyjamas, drink tea and eat cake in the middle of the day.

I don’t help myself though. I’m one of those people who sets the alarm 20 minutes before they need to get up and then hits the snooze button four times, just to make sure I’m reeeally irritated by the time I finally rise.

When Leesa got in touch with me and asked me if I’d blog about my morning routine, I thought it was probably the motivation I needed to actually get one. Falling asleep at midnight with my phone inches from my face, then waking to the alarm and hitting snooze for as long as I can, changing outfits three times until I’m running late then inhaling tea and toast whilst I blow-dry my hair doesn’t really scream ‘Morning Person’.

It’s so easy to make some very simple changes that will have a big impact on how you start the day, so I’ve decided that – on top of my very solid five new year’s resolutions  I will also commit to a healthier morning routine.

morning-person

Of the eight things on the list above, I can easily split them in to three categories: the ‘already doing this’, the ‘can do this from today’ and the ‘can achieve this by the end of the year’.

Already ticked:

I already spend my mornings being productive. I make to-do lists as I’m buzzing about, and I respond to emails (often the ones sent from the other side of the world whilst I’ve been asleep) over breakfast or on the train. Productivity was never the issue.

I absolutely never ever skip breakfast. I don’t drink enough water though, so I can (and will) rectify that immediately.

Need to start from today: 

I love the ‘do something positive’ box on this picture. For almost two years I’ve been promising to start my morning with a yoga stretch, and since then I haven’t done it. Not once.

I also don’t know why I don’t plan my outfit the night before. It’s the most simple thing, saves so much time and yet I never do it unless I have a big meeting or something important – and I always think, ‘I really should do this more often’.

About a year ago, we set a bedtime and went upstairs with enough time to read before bed. It forced us to put the screens down and really relax, and we often shared a book and took turns reading to each other. Somewhere along the way that stopped, so I plan on picking that up again.

By this time next year: 

I want a new bed. I’ve wanted a new bed for about five years. I keep saying that if you have chronic pain then a decent bed and mattress are investments worth making, yet every time I start looking at them, the cost makes me think I can probably cope with mine for a bit longer. By 2018 I will have upgraded my bed. Fact.

What do you do to ensure a happy morning?


university-of-missouri

Image via University of Missouri

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.

trousers

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?


Pin now, read later…

traditional

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.

step-to-recovery

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 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.

realizes-tumblr

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.

liofirm1.jpg

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.


Pin this article to read later:

liofirm2

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.

001

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!

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?

gold

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.)

good-times

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.

good-times1

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.

giphy.gif

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.

Floating for fibromyalgia: A review of Floatworks

Have you ever floated before? I hadn’t, until last weekend when I made my way to Vauxhall at the ungodly hour of 5:15am to spend an hour in a float tank, courtesy of the new Floatworks centre.

For those who haven’t come across floating before, it really is as simple as it sounds. You spend an hour in a private tank, floating in the water with nothing but your thoughts. It’s believed that floating reduces stress, enhances your mood and relieves pain. In fact, fibromyalgia is actually referred to on the Floatworks website so I figured if I was going to float anywhere, this was the place to start.

IMG_2167.JPG

The float tank in my very own private float room

Before I tell you about the float, I really need to tell you the lead up to the float and the insane levels of customer service I received from the Floatworks team. I am someone who gets frustrated by poor customer service and, even worse, poorly organised service, and so I am a loyal customer to companies whose attitudes and values reflect my own. But let me tell you, Floatworks have taken it up a notch. Or fifty notches.

I changed my appointment with them an embarrassing four times, and not once was I made to feel like an inconvenience. In fact, on arrival I was made to feel like an old friend – and not in a forced, annoying, creepy way like the people that greet you when you walk in to clothing stores. I received confirmation of my appointment via email, as well as a clear list of things to be aware of before the appointment. They explained that the session includes a private room with your float tank and shower, fluffy white towels, ear plugs, cold water, shampoo, conditioner and shower gel, as well as access to hairdryers, straighteners and the chill out room which offers a variety of herbal teas. I was sent a reminder two days before the appointment, and clear directions offering me a range of ways to access the venue. Honestly, for someone like me, this is admin heaven.

But I’m guessing that, unless you’re as over the top about organisation as I am, you’re probably more interested in the float than the pre-float emails. So did it live up to expectation?

IMG_21792.JPG

The view from inside the tank

Yes and no. After a quick shower to start the session, I dried my face and climbed inside the tank, pulling the lid down over my head. There was beautiful, soothing music and the surrounding blue lighting meant I entered the tank feeling relaxed and calm. The water was warm and even if I wanted to, the balance of salts in the water (or whatever it is, I’m not a scientist) meant I couldn’t sink below the water level. I popped in my ear plugs and lay back to a feeling I can’t describe. It was strangely liberating. I felt lighter than air and it was everything I hoped it would be.

For the claustrophobics among us, please, fear not. The tank is spacious and you are in complete control, so if you decide you need to prop the tank open with a towel or open it completely, that’s absolutely fine. At one point I stretched out like a starfish to see how big the tank is; I’m 5′ 7″ (170cm) and if I stretched my hands and toes I could just reach all sides of the tank. I certainly didn’t feel cramped and I had enough room to bob about from side to side, feeling quite content.

img_2182

The very glam facilities in the Hollywood room

So up to this point, it’s all going pretty well. The problem is that it lasted about 15 minutes. The plinky-plonk music fades away after 10 minutes so you’re left with nothing but your thoughts. For the experienced meditators in the tank that’s no problem at all, but for the likes of me – the woman who makes lists in her head in her spare time – it was a challenge. A challenge that I took head on and felt was going pretty well, until I realised I was basically writing this blog post in my head whilst lying in the tank. Once I’d written the blog post I started thinking about all the things I had to do that day, that week, that month. I also started to write my wedding speech, so not entirely relaxing.

Soon after realising I wasn’t a model floater, I tried to get back in the zone by bobbing about and enjoying the feel of the water. But again, bobbing isn’t floating and I made a bit of a splash, got some salt water in my eye and it all became a bit stressful. I had to remind myself I was not a toddler in a bath tub, but it seemed too late.

By the time the soothing music came back on to signal the end of the session, I had lost it. I’d lost whatever calm I’d felt 50 minutes previously, and I’d lost the desire to be in the tank because you know what? An hour is a long time. I was starting to feel a bit breathless and, dare I say it, a bit stressed. I felt relieved to step out of the tank, and welcomed the cooling shower. I then sat in the chill out room for 20 minutes with a cup of herbal tea – green tea, jasmine and rose with gingko biloba – and a book on artists’ impressions of the human body. Because, why not?

IMG_2192.JPG

Positivitea tea is worth buying if only for the excellent pun, surely?

The visitors’ book was an interesting read too, and showed that many people had experienced something quite incredible during their hour in the tank. One person had left the page entirely blank except for writing, “I can feel again.” Another wrote a long passage about the meaning of life and his place in the universe, so it appears this floating malarkey has a pretty profound effect on people.

On the way out, I spoke to a member of staff about my experience. He smiled, but didn’t seem too surprised. He said some people find it very easy to float, whilst others find it takes practice. Some feel an instant change to their mental or physical wellbeing, whilst others need a few sessions to feel the difference. I had hoped I’d fit into the former category, but it was always going to be unlikely considering I never find these things easy. It took me about a year to feel enjoyment from Pilates. I did say that I found it much easier to relax when the music was playing, and he said he’d add a note to my file so that next time they don’t turn it off. I liked that.

Will there be a next time? Yes, without a doubt. I don’t feel like it was a waste of time and I feel like now that I know what to expect, I should find it easier to deal with. Plus, I know so many fibro sufferers who have felt the benefits of floating that I owe it to my body to give it another go. My mind will just have to get on board. Two days later, I haven’t felt any dramatic changes to my pain but I’m still in a flare so it’s tough to know anything at times like this.

If you fancy giving it a try and you’re in the UK, I strongly urge you to visit Floatworks. This isn’t a sponsored post, I’m not secretly floating in their bribery money, but I truly believe that when a company is as thoughtful and caring as they appear to be, they should be recommended. So check them out, the experience is nothing if not fascinating and I look forward to hearing how you get on. You can book online and they have an introductory offer of three floats for £100 which is pretty good. Other price plans and offers are available on their website.

Also, just so you’re aware, Brunswick House restaurant is just around the corner and it’s a great place for a post-float breakfast. Get involved.

IMG_2202.JPG

Brunswick House yoghurt, granola and berries

pinnable.JPG

Pin this to read later

The 3 things to do in a flare up

Day-to-day chronic pain is hard to deal with, so it’s comforting to know that a lot of sufferers spend time sharing coping strategies through wellness blogs and social media, which hopefully help to keep some of the pains at bay.

But when a flare hits, everything is so different. We don’t have the energy or ability to put those strategies in to practice because everything is so hard, so painful. A flare in chronic pain symptoms often means a spike in hypersensitivity. Sitting up hurts, wearing clothes hurts, working and walking  and being hurts.

I wrote these posts to explain what a flare up feels like and how I know when it’s on its way and, if I can just take a moment for self-congratulation, I think the images in both posts are the perfect depiction of a chronic pain flare – because I really hate the weak-looking people holding their head in their hands.

via-vivian-yang

Image via Vivian Young

So, when all our symptoms are heightened and we still  have to function, what are we going to do about it? When all feels lost, here are the three things I’m doing to get through it. (Six weeks and counting folks, six whole weeks.)

#1 – Up your level of self-care 

I wrote this post about self-care last week and I can’t stress the importance of putting everything else on hold and just looking after yourself. During a flare we spend so much time trying to balance everything and continue as normal but now is not the time. Now is the time that it’s okay to say no, okay to stay in bed and tuck yourself away. Have warm baths, surround yourself with the things and people that make you happy, and pull out all the stops to make yourself feel looked after. Now is the time to up your game when it comes to rest and self-care.

#2 – Wrap up warm 

When every part of your body hurts and the seasons are changing, now is the time to wrap up warm. Buy good thermal clothing, arthritis gloves, scarves and hats – and don’t be embarrassed that you seem to have got a little over-excited about the forthcoming winter weather. Last week, a woman approached me at Paddington station. I was wearing a coat, a scarf, my gloves and a winter hat. There’s a chance I’d overdone it, but I was feeling chilly and sore and wanted to replace it with warmth and protection. A woman came up to me; she was wearing a black sleeveless dress and carried a light blazer over her arm. She said, “this is so funny – you’re dressed for winter and I’m dressed for summer but I think it’s actually somewhere in between.” I laughed and clocked my reflection in a shop window. I looked ridiculous. Warm, but ridiculous.

#3 – Spread the word 

Let’s be honest, chronic pain is always a bit shit. But if we’re going to help people understand just how shit it is, then we’re going to have to talk about it. My friends understand my fibro, they know I’m in pain but they know I can cope. When I’m in a flare, I don’t feel like I can cope. I don’t feel anything but mind-numbing pain and it is quite genuinely all I can think about. People don’t see that, and they don’t realise your flare is anything different. So use the word, tell people what it means when your symptoms flare and – most importantly – use this as the time to ask for help.

via-pudendalnerve

via Pudendal Nerve

Who would think that moderate levels of pain would be something we’d crave?! Right now I can’t wait for the other side of this flare. I remember ‘normal pain’ and I miss it. So I’m taking deep breaths, sticking to the basics and hoping that I’m out the other side before I know it.