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Reflections on 2017

2017 has been a year full of ups and downs. Before I go on I will no doubt mention on numerous occasions:

Without further ado, lets get started…

January

My amazing friend Sabrina beat breast cancer then got married abroad, and I was lucky enough to be able to make it to her wedding reception for a couple of hours with the help of another friend. Definitely a highlight as I hadn’t seen her since I moved to Brighton six years previously.

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I also managed to make it to a tutorial for my Open University course at the London School of Economics – I finally felt like a real student!

February

The first two weeks of February were a washout with a nasty virus that wouldn’t leave me and more fatigued body alone. It was a long, horrible few days. A trip to see a friend in Midhurst was cancelled and I was pretty upset and blue.

On recovery I managed to meet Stuart in Preston Park where it snowed and we went on our first mysterious ‘assignment’. An utterly fantastic and hilarious afternoon.

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I finally got an appointment with a real medical professional who for once didn’t patronise me, tell me to join a gym or make me cry, I had some medication increased and was booked in a month later to see how I was doing.

March

My wife and I finally had a day out together and we went to Worthing. After hearing numerous horror stories I was pleasantly surprised at the beautiful beach, different wildlife and lovely town centre.  It was also the first day of two solid months of heartburn.

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I wasn’t well enough to make a tutorial at Kings College London, again, but did manage to look round a few old bookshops with Stuart instead.

I went on a solo mini trip to Seaford, a local town, to sit on the beach and write. Again, I was surprised at what this small seaside town had to offer in way of views and scenery. It was also a beautifully warm spring day.

I had to give up my university studies with The Open University. I obtained a letter from my doctor supporting my decision. the university kept all my money and sent a letter saying I have to recover by November or I lose it.

April

Stuart took me to his studio before we went on an ‘Industrial Assignment’. I came home to find my wife and brother in law tucked up asleep on the sofa.

The second week of April saw Nat and I celebrate our fifth anniversary and we had a lovely little treat planned. With a cat sitter booked in, we headed off for a delightful french afternoon tea at Julian Plumart, shopping for a Pandora bracelet and then on to The Grand Hotel, a stunning luxurious Victorian hotel on the seafront where we had a suite, a queen size bed and more floorspace than we knew what to do with. Oh, and a bath – all hail the bath!

May

I joined a local gym and before working out decided to get some expert advice. I found a trainer who said his mum had fibro so thought we’d be a great match. On the day of one of my first session I was very ill after a lot of overtime at work. After emailing to cancel he replied saying lying in bed won’t cure me and I should get off of my backside. I didn’t go back.

‘Assignment Carouselfie’ with Stuart. No further words are required.

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I met dad in London for a trip on a Route Master bus and took fun photos with my polaroid camera.

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We bought Suzie Smart Car. A lifelong dream come true!

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I attended Marie Clare Future Shapers in a flash London hotel. A great but utterly exhausting day, but I met another fellow Lancashire Lass living south and we spent the day hanging out together while she looked after me.

Woo, a busy month!

June

Nat and I visited the animal rescue centre Raystede. A beautiful day and nice relaxing drive through some quiet countryside.

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I was meant to attending a blogging event – Blogtacular – but wasn’t well enough to go, as usual.

The guys from work chauffeured me and Nat in a rather posh car to One Aldwych for afternoon tea, my birthday present from Nat.

July

My parents came to stay. A lovely weekend. We took them to Julian Plumart for afternoon tea.

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I stayed with my friend for a quiet, sleepy weekend in Midhurst and went to watch her perform in her local village choir. A beautiful evening.

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August

I bought Nat horse riding lessons for us both for her birthday. Note to self, don’t learn to horse ride at 31 and definitely don’t do it with chronic pain. I actually couldn’t sit down for a week. However, riding a horse over the South Downs was an incredible, if not extremely painful, experience.

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I had lunch at The Lanesborough in London following on from a work trip. A delightful, delicious experience.

Nat and I hopped in Suzie for a spontaneous trip to a small local farm. We acted like children, got lost in a maze and attacked by the most persistent wasp ever to have existed. A jolly good day in the sunshine.

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September

I met my buddies from the ME/CFS NHS group I attended last year – the first time we’ve all been well enough to meet up together. It was so amazing to see them again.

I had a brain and head scan to see what on earth is so wrong with my painful locked jaw. I must have a huge brain as it took over an hour!

October

On a way to a local cafe to meet Stuart I fell upon a book fair. Needless to say we had the most wonderful afternoon with some excellent antique finds.

November

I didn’t recover, thus lost my university fees.

I headed for a restful weekend in favourite place on earth – St Annes on the Sea. With the help of staying in a luxury guest house a two minute walk from the seafront I had a relaxing, sleepy time and saw some of the most beautiful sunsets and chatted to some wonderfully friendly people. Lancashire is definitely my spiritual home.

Nat and I stayed in a hotel on Brighton seafront a few minutes in a taxi from our home. With a mahogany four poster bed and sea views it was a lovely treat, and dinner at Prezzo was indulgent and delicious.

I started working with Jody Shield – the healer, coach and mentor and got taken under the wing of her and her amazing team.

Nat and I went to a local Christmas Craft Fair at Brighton Open Market, a stones throw from our house.

December

Mom came to stay while Nat was at a Buffy The Vampire Slayer Convention. We had a lovely festive weekend including a buffet and Christmas song evening with Stuart.

I attended both the Advent and Carol services at my local church which is a beautiful example of architecture with stained glass windows and a stunning original organ.

Christmas (early) at my parent’s house was the most festive I’ve felt in years, with gifts, decorations and Christmas dinner it was quite perfect indeed.

Nat and I also went with Stuart to a traditional night of ghost stories as told by the Victorians in the run up to Christmas.

And so I finish writing this on the 21st December, with the real Christmas day still to go. I have of course omitted most of the parts where I have felt dreadfully unwell for most of the year, and I simply couldn’t include every wonderful lunch or tea/coffee shop visit with Nat, lunch and serious selfie dates with Stuart (or Dr Mystery as I prefer to call him) and the many wonderful times with my parents or I’d never get this post finished! I have also seldom mentioned my beloved Trinny, the fluffiest, prettiest nurse around. 2017 wouldn’t have been the same without her…

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I also haven’t written about my job. I work with an amazing group of people who I am proud to call my friends and colleagues and I am being supported in my ever changing career no end. They take me to and from work to save on energy, run my errands if I am too unwell to go out and are just an awesome bunch who look after me, so a huge thank you to everyone at Consec 🙂

I am currently working on my hopes, dreams, goals, aspirations (whatever you want to call them) for 2018. But the product of that is definitely for another blog post…

So as I bid farewell to 2017 I want to take a moment to express gratitude to the friends who have checked on me when I’m ill, not got annoyed when I cancel plans for the fifth time and bought me loads of tea!

Here’s to a fabulous 2018!

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Overdoing It

Chronic illness is a funny old thing (not as in haha funny, as I’m sure you’ll understand if you’re reading this!). Sometimes you can do nothing and feel absolutely awful as if you’ve run a marathon then had the remainder of life sucked out of you by a Dementor, Harry Potter style. Other times you have the luxury of doing a little bit more than usual and feeling ok, no post extertional malaise days later, you just keep on plodding along. And then there is actually overdoing it and your mind and body punishing you for it as if to make sure you never leave the house again.

Last week I worked a couple of extra hours, had to get to the vet with my kitty cat (old lady check and essential vaccines) and like an idiot decided to book a ticket to the (very) local book discussion at a book store to see my favourite writer, horticulturist, and all round awesome woman.

Extra hours worked, no more than two I might add, lifts to and from work all week by my wonderful team of colleagues and friends I was doing ok-ish. Getting to the vets with my wife which is five minutes away wasn’t too troublesome. But as we were sitting in there waiting for the nurse to find the kitty blood pressure cuff (by the way the cutest thing in history – see here), that feeling came over me, as if someone had pulled the plug out and I needed to lie down immediately. I couldn’t string a sentence together, support my own body weight – thank goodness for the kind nurse who brought in chairs – or feel like I was going to be able to keep my eyes open. When that feeling hits I feel like I could collapse at any given minute, something which thankfully has only happened once and luckily I made it to my sofa in time. As soon as we made it home my wife helped me put my pjs on and I made it to bed, tramadol, a bottle of water and a very upset kitty cat for company. I slept solidly for three hours.

As the week went on I became more and more anxious. My generalised anxiety disorder (GAD) has no known trigger but tiredness makes it so much worse. I couldn’t face the book talk, could I. At the last minute I awoke from a nap just in time to slowly get ready and get the bus which thank god is only five stops and door to door. Disability pass in hand I bagged a front seat and the driver waited until my backside had hit the itchy nylon cushion. Alys Fowler is a true hero of mine, she inspired me to garden when I was housebound for almost three months with the onset of GAD, got me obsessed with growing my own fruit, vegetables and cut flowers, study floristry and she writes an awesome book. I got the lift to the third floor, folded up Little Johnny and made it just in time. For that short period of time I forgot about being ill in the intimate setting of the small discussion and enjoyed myself more than I have in a while. Everyone I told bar my parents said I need to get out more and am too young to watch a horticulturist impart her life wisdom in my spare time, but I’m so glad I braved it and made it. My hair may have been a disaster, make up smeared around my eyes post nap, but I didn’t care, and neither did Alys when I had the opportunity to chat with her.

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Next comes the weekend. A time to have luxurious lie ins, wander about the local area (I live in Brighton’s iconic area of coloured terraced houses and steep streets), eat great food and meet friends. Er no! My so called lie in woke me at 3am Saturday morning so dizzy I had to hold onto the wall when popping to the loo, lie down in stages as my head was swirling as if I’d drank one too many bottles of wine, and of course, couldn’t get back to sleep. Dizziness to this extent is reserved for times when I have seriously overdone it. I assume this means going to the vets and sitting down to watch a 45 minute book discussion. Really living it large! The dizziness intensified and waned throughout the day depending on how close I was to my next nap and all hopes of cooking delicious healthy food went out the window for a takeaway. I felt as if I was floating all day, was nauseous and a strange pale shade of grey that matched the dark circles under my eyes. I fell asleep on the sofa, awoke as dawn broke and spent the next few hours waking up every half hour. Exhausted and still dizzy I gave in at 9am and made myself a cup of tea. Unable to get to sleep for a nap I decided to get out my notebook/laptop and write this blog.

Tomorrow the cycle begins again, my alarm will go off and my incredibly boring, sedate, yet exhausting routine starts all over again…

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Beautiful Birmingham

Every June around my birthday I go back to Birmingham to spend a few days with my parents, see friends and to relax. This year I was extra lucky as not only as it warm and sunny, but I managed to spend some of my birthday (which was also father’s day) with my parents. We enjoyed tea in the sunshine while laughing at old memories before I left, first class train tickets in hand (and a bag of lovely pressies from my parents and friend)

I was definitely in need of a break when the visit home came around. Although my fatigue and pain tend to be less intense in the hot weather, I have a more general ongoing feeling of exhaustion. A couple of the afternoons we all read until we fell asleep and I had glorious two hour naps. My parent’s have a beautiful garden that blooms all year round and I couldn’t resist but take lots of snaps, especially around dusk with the gorgeous sunsets. We also visited a local park to feed the ducks bird seed and meal worms where a goose stuck it’s head up my dress and pecked my camera. Luckily I escaped unharmed!

Here are some of my favourite photos of the garden and park. I know in years to come I will look back at these photos with a smile and remember all the great moments of this long, lazy weekend.

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A Day With Fibro and ME (Vlog)

Whilst I will never be a filming profession, hand in my notice to my day job and become a full time YouTuber, or even create anything remotely entertaining, I have had the desire of late to create a video that shows what my typical day off is like.  And so my first video (click the link here) was born. I taught myself to edit in half an hour, spent hours trying to put cover music on it and even longer braving the set as ‘public’ button. So for those of you who are interested (don’t feel obliged) here is my first ever edited video.

It mainly shows me drinking tea, having a rest and sitting with a very protective nurse Trinny on my lap. I hope you enjoy it.

Karen x

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It’s ME and Fibromyalgia Awareness Week

Every week, every day in fact seems to be awareness for something nowadays but this one is one that I feel is really important. Invisible illnesses often get less recognition because you can’t see what effect its having on a person. Here’s a few of my favourite blog posts and websites to help you get clued up about the illnesses I live with and how they affect my every day life.

Meg Says

Action for ME

ME Association

Once Upon A Fibro Time

Cloudy With A Chance of Pain

Fibro Blogger Directory

An of course… my blog!

If you know of any others that you think should be added to the list let me know!

Happy reading 🙂

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Spring At Home

Spring is such a beautiful time of year, it’s a close second the array of bronzed colours Autumn brings.

If you’re a regular reader of my blog you’ll know that I don’t often get out an awful lot, and I certainly don’t have a garden to admire from the dark basement flat that is my home.

The winter had left me feeling rather down in the dumps and generally fed up of the four dark damp walls of my expensive Brighton rental home. With no grass verges outside, few trees and not a sparrow or starling to be heard twenty minutes inland from the sea, I was desperately craving some greenery and colour at home. But with the lack of sunlight I have always been convinced that no plant could survive here, just as I appeared to be struggling to.

Then I read a magazine article about how good it is for your mental health to fill your home with plants. I am lucky in that I have huge Victorian windowsills on the two windows in my flat so I decided to hot foot it (get the bus) up one of the steepest hills in Brighton to my (very) local garden centre.

I’m positive that once inside my wife despaired of me, I was thoroughly excited by the greenery an houseplant options that surrounded me and she promptly abandoned me for the book section! Cautious of the poor light I finally came home with a couple of plants, a cacti pot and some pretty pots for them.

A few weeks on, they are alive and well so after a doctor appointment we went to the local florist at our market who always have a lovely selection of plants. Having read aloe vera plants are good for aiding sleep and need little light, this insomniac got her hands on the biggest one there for the bedroom windowsill along with a beautiful red edged grass of which I’ve not a clue what it is.

Finally, I needed some floral colour, so a trip to Marks and Spencers gave me the opportunity to be treated by my wife to a couple of lovely bunches of flowers and daffodils that cost just 25p because one flower had started to open, bargain!

Having been a keen gardener back in my home town of Birmingham, and even volunteering for a Jacobean walled garden, this green fingered girl (ok, woman)  is loving chatting to and watering her plants, I forgot how much I missed it. I’ll certainly be getting a bunch of flowers every week too.

Here is a small snapshot of some of the colour that is currently filling my home. I hope you like it as much as I do!

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Southern Rail Strikes – Trinny’s Story

Controversial as this post may be, I suffer endless abuse on social media for supporting the ongoing rail strikes, not just because I’m from a family of rail workers all over England, but because I travel with a disabled rail card.

In the past conductors and train managers have looked after me when I’ve had panic and anxiety attacks, have been so unwell I vomit, and have struggled with mobility after long journeys. Most of the assistance comes from the amazing staff on Virgin Trains and in the Virgin First Class Lounge. I travel first class as I need extra room, less crowding and extra staff to help if needed. I also need to rest between each leg of my journey. Since moving to Brighton, the routes I regularly use locally have not had any staff and it has been the case, on more than one occasion, that passengers have looked after me, from keeping my mind busy during anxiety attacks, to holding my hand to help me get off the steep train steps with large gaps between the platform and train.

I recently discovered the catsagainstsouthern hashtag, and of course, being the mad cat lady I am, I just couldn’t help but get my Trinny involved. So without further ado, here’s Trinny’s Story.

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Life With Fibromyalgia

A friend shared this post on Facebook. I don’t usually read long posts like this, or even acknowledge them, but this one really rang true to me and I felt the need to share it to raise awareness, help understanding of such a misunderstood condition, and remind my friends, both off and online, what life can really be like for me.

#Fibromyalgia took hold of my life 15 years ago it was totally unexpected, it just took hold of me and changed my life overnight, people who knew me before #Fibromyalgia know I was a hard working person who enjoyed life, #Fibromyalgia took all that away from me… Don’t judge what you cannot possibly comprehend as if someone had told me about #Fibromyalgia before I was diagnosed I too would not have been able to understand. No one is immune it’s there just waiting for the chance to control your life, all I ask is that my friends are patient and understand sometimes I can’t do normal things without paying a big price a Flare up !

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you with house/garden work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the curtains or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

11. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

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A Day in The Life of Me and My Walking Stick(s)

As I’m sure many of you are aware I am the reluctantly proud owner of a walking stick named Little Johnny by a good friend of mine. For those of you who are not aware of the story, to put it simply, we have a love/hate relationship. Johnny spent about six months in the corner gathering dust, until one day I was frogmarched home by my friend to get him and take him for a walk. To be honest, this made me hate him a little bit more, especially when colleagues at my then job saw me struggling to cope with him on a bus. But I knew I had to persevere, my health wasn’t improving, so it was this or walk around looking like I’d had some terrible sort of accident in the toilet department or get overtaken by elderly ladies with shopping trollies (this actually happened).

I refer to the stick as ‘him’ as it makes it easier to deal with. My friend refers to his cane as Michael (Caine) as he needed help coping with using it at first, then it just became Michael, and Johnny just became Johnny. Also, I give everything a name, my cars were called Nigel and Matilda and were referred to as such, and not as ‘my car’. I realise this is not normal in many people’s eyes but where’s the fun in being ‘normal’?!

Here’s a typical day with Johnny:

Get ready to leave house, wonder should I take Johnny.

To and fro a little, pick him up, put him down, fold him into a bag, get him back out.

Leave house with Johnny, try to work out which side needs most support – hang on, why are those people looking at me, oh wait they’re not.

Get to bus stop, get groaned at by person wanting to sit on seat. But I’m taking up the last space. Get stared at a little.

Get on bus – people either flee if I sit next to them, which is odd, or a lady 70+ tells me off as I don’t look disabled and I’m sitting in ‘her’ seat.

Get off bus, people huff and puff as I take my time.

Walk for a bit, put Johnny away, it’s too stressful. But wait, I really hurt. What shall I do?!

You get the idea…

Anyway, back to Johnny. We’ve slowly been taking more trips together and he’s been out to meet my friends (one of whom tried to steal him, yes that’s you Lord Stu!) and life with him has been getting slightly easier. There are even times when I feel at a loss without him. I’ve been taking him out voluntarily and not after being told to do so by a close friend or my wife. There is a situation or two where I do get nasty things said to me about having him but I’m doing my best to take it in my stride. We also often get looked at and glared at by elderly people. For example, on my way to work today I needed a seat at the front of the bus, my hips were not my friend, and an elderly gentleman as taking up a seat with his bag and I didn’t feel comfortable asking him to move it while he just glared at me, so I sat behind him instead. But the thing is those seats say for ‘those less able to stand’ and today, like most days, that was me.

I get angry at myself for not standing my ground, saying something to the person with the bag that’s got the window seat, or to the people who laugh at me. But here’s what I really want to say:

Don’t laugh at me because I’m 29 and using a stick, do you think I want to be this way? No of course I don’t, but if it enables me a little more freedom, independence, and the ability to get to work in the mornings then I can and will use one. And no, it’s not pretty, pink and flowery to get attention or create a talking point, it’s to make it a little easier to use. And anyway, pink is my favourite colour, not that it’s got anything to do with you. So stop staring at me, stop taking the mickey, and let me sit down on that flippin’ seat because my body is exhausted, sore and if you stare at me much more I may well cry.

Sadly, I realise that all of the people I want to say this to will never actually read this, but perhaps if I can write it down, I can take steps at building myself up to say it, just like the steps I took in taking Johnny out. It may have taken me a year, but I got there, and I will come back a stronger person from this.

To celebrate this occasion, I decided to get Johnny a friend, a kind of mail order bride if you will. She’s called Dotty, she’s shiny, and new, and a lot lighter than Johnny but doesn’t fold away in my bag (great when I’m too embarrassed). So, without further ado, meet Dotty:

Johnny's new friend.
Johnny’s new friend.

Isn’t she pretty. I’m hoping it won’t be long before our first outing because I actually do want to show her off!

Do you use any walking aids or use a wheelchair? How do you feel about using them? Have things changed over time for you? I’d really love to hear from you all on his subject.

Until next time…

Karen, Johnny and Dotty xxx