Friday, 30 November 2012

Hush! Too good to keep quiet...

Now, as you all probably know by now: I like things cosy. Indeed, if 'cosy' were a political ideology it'd get my vote at the ballot box (take note Messrs Cameron, Clegg and Miliband: include cable knit socks for all in your manifesto in 2015 and you've got me on your side).

Which leads me to my latest discovery, courtesy of the always brilliant A Model Recommends and The Baking Fashionista, the UK's leading nightwear and lounge wear specialist: Hush.

If you were looking for the perfect Christmas present for the hibernation aficionado in your life, then look no further. 

How I was hitherto unaware of their existence is anyone's guess, it's like the brand was created with me in mind. Every page you click: yet more cosiness. 


I am particularly in love with the look of their brushed cotton PJ trousers. The trouble is I don't think I could decide upon one single pair. If I was forced to choose (i.e. if my tea bags were being held at ransom and their safe return depended on my choosing. No joking around when it comes to tea people, oh no.) I'd go for the 'Small Stars' in cream and black, but really they are all too pretty to choose a solitary pair. OK, so the prices aren't the cheapest (£30-£50), but for pyjamas as beautiful as these I'd be prepared to flash the cash. 


Not only do they do a whole host of stylish nightwear and loungewear, but they've got accessories (cable knit socks included, naturally), gifts and something for the men folk too. Oh, and? Mugs. I think I may have mentioned my slight obsession with all things mug shaped before?  If not, my official line is: You. Can. Never. Have. Too. Many. Never.

Heaven, thy name is Hush.

       Image courtesy of Hush UK

                                   
                                                                           

                                                                     
                                                                         



                                                               


Got M.E....? There's an App for that!

I don't know about anyone else, but one of the things I've struggled with since M.E. decided to pay me a visit, is finding the very fine, almost infinitesimal , balance between trying to keep up some sort of level of activity and then not totally writing myself off for the next few days.

I try to get in a few 5-10 minute walks a week, and attempt to get out and about a bit more at the weekend. But I've been noticing that after the weekends it's guaranteed I will go straight back to square one again and spend Mondays and Tuesdays sleeping for the entire United Kingdom, never mind England.

Oh,and when I say I 'get out and about a bit more'? I'm not talking clubbing until the early hours or hiking up the nearest larger than average hill. No no, dear readers, I'm talking just about managing to walk to a local cafe for lunch or coffee (for local, read: approximately 7.5 minutes away from our abode, so, you know, practically on our doorstep), or gently ambling around our neighborhood enjoying the hazy winter sun.

Not exactly what you'd call strenuous really, but these little sojourns manage to leave me short on the ole' energy supplies for a good couple of days. 

So it was with great interest that I read a news report, on the Bristol University website (link kindly sent to me by a friend), about a new app, aimed at targeting the problem of these 'boom and bust energy cycles' that many M.E. patients experience. The app has been developed by the University's School of Social and Community Medicine's Dr. Esther Crawley  in conjunction with Indigo Multimedia, the Royal National Hospital for Rheumatics Diseases (RNHRD), and the Northern CFS/ME Clinical Network.

ActiveME©, in the words of its creators, Indigo Multimedia, helps patients track energy levels, shows energy patterns and helps patients plan their activities to achieve their baseline and then to safely increase levels of activity.

The app, which yesterday picked up the Innovation in Technology award at the NHS Innovations North Bright Ideas ceremony, allows M.E./CFS patients to keep tabs on their energy levels, see how they're expending their energy, and to email this data to their Consultants.

This is an excellent example of how smartphone technology can be harnessed and used to help patients dealing with chronic or long terms illnesses.

AcitiveME© is available to download from the iTunes store for £1.49. Which, I think, is a small price to pay for reducing 'payback' and breaking the seemingly inescapable cycle.

Roll on January, when I can get my hands on an iPhone (via network upgrade, not any nefarious means, you understand), and give it a go!




                                                                         


Thursday, 29 November 2012

It's going to be a MAC Christmas...

Urgh. I am not feeling today what-so-ever. Apart from being ridiculously (or, rather, ridic) tired (you'd think I'd be used to that now, wouldn't you?) I feel like I'm coming down with that proverbial scourge of human kind: the common cold.

How is it possible that such a seemingly innocuous little rhinovirus can wreak such havoc? (Incidentally: I always picture a pygmy Rhino in my head. Being attacked by a pygmy Rhino would definitely be the cuter scenario but I can't imagine it'd be any more pleasant. I mean, come on, those diminutive horns have got to hurt).

So anyway, it's cold ahoy and a double whammy of viral based joy. Oh look! That rhymes. Sort of.

In an effort to cheer myself up I decided to peruse the MAC website. Never a good idea, when one is more brassic than a church mouse who is being paid less than this Government's idea of a minimum wage.

But, oh! What delights awaited me. Their 2012 holiday collection kits are housed in gorgeous (and supremely girly, let's be honest) compacts replete with padded satin, in mouth watering candy colours, and black patent bows. There's more than a definite whiff of retro about them; think 50s vintage burlesque meets Sandra Dee. You can choose between a face and eye kit, or you could just be totally frivolous -with a collection this appealing, who'd blame you?- and buy the lot.

Also (clearly MAC feel we've been good girls (and boys!) this year, and deserve to be spoilt) included in the line-up are the sweetest little miniature hat boxes full of  lip glasses and pigments pots. 

Time to hide the credit card...


             


                                                           

Wednesday, 28 November 2012

Word up...

Did anyone happen to see Newsnight last night, or read The Guardian on Monday? 

Having a degree in Applied Language Studies I tend to take an interest in, or prick my ears up at, anything of a linguistic nature. So I was intrigued when Paxo introduced a piece to camera about the "ethnic cleansing of the Oxford English Dictionary".

It is claimed that eminent Lexicographer, Robert Burchfield, deleted thousands of words from the OED, on the basis that they were of foreign origin, during his tenure as Editor between 1972 and 1986.

It's thought that Burchfield deleted around 17% of loan words and other World-English words that had been included in previous editions.

He was clearly on some sort of misguided one man crusade to protect the English language from the 'vagaries' of the tongues of far flung lands. Perhaps he modeled his Editorship on L'Acadamie Francaise and wanted England to follow suit in the safeguarding of its vernacular? Who knows? Whichever way you look at it, it was exceedingly myopic.

The sheer beauty of English lies in the fact that it is transient, fluid and ever changing. It's an organic entity that evolves with every new generation, every new fashion, every new fad; where society goes, language will be sure to follow. Our lives, and lexicon, have surely been enriched, for instance, by recent additions such as vajazzle (OK so maybe not that enriched); omnishambles; photobomb and totes.

It is a rich and flourishing tapestry made up of old words, new words, portmanteau words, loan words, blended words. In other,er, words, English is, like, totes amaze.

I'm not sure what Burchfield's agenda was exactly, but to have purposefully curtailed the wondrous beast that we call the English Language is tantamount, in my very humble opinion, to committing linguacide*. 

Thanks (cough) to him we have missed out on, according to The Guardian, these fine specimens:

Shape - A Tibetan councillor
Chancer - A verb from American English meaning "to tax"
Calabazilla - A wild Mexican squash
Wading-place - Used to refer to a ford
Swamp fuchsia - Common name in Australian English for Eremophilia maculata, a species found in Queensland

My favourite? Undoubtedly 'Calabazilla'. It positively rolls off the toungue and is almost lyrical in its intonation. I'm not sure when I'd ever have call to use it, but it's probably one of those words you'd use joyously and liberally just because, well, you could.

Now, excuse me while I go and see a Shape about a Swamp fuchsia...



                                                              












It's a (nearly) Christmas miracle...

So. The Appointment. Not entirely sure why I've capitalised it there, but hey, artistic license and all that.

Anyway...

As I was saying, today was my millionth* follow up appointment with my GP and it went a little something like this:

(Picture the scene: A consultation room, a desk, two chairs and various medical paraphernalia, oh, and a mug with a Victorian era Cadbury's advertisement printed on it (mmm chocolate).) 


Mr. GP Man**: " Hello! Sorry for the wait, how are you?"



Me: " The same, I'm afraid. Still exhausted and shaking. Although I do have a new symptom! I get a crawly feeling on my skin (mimes crawly skin feeling), and it feels as if it's tingling or I'm being jabbed repeatedly with needles (mimes jabbing with needles effect)."



Mr. GP Man: (Sympathetic face) "Is that all over, or in one particular place?"



Me: "All over, legs, arms, everywhere really (mimes 'all over')"



Mr. GP Man: "When are you next seeing Mr. Lung Specialist Man?"



Me:  "January I think, although my lungs are fine at the moment, relatively, and I don't feel the two are connected."



Mr. GP Man: " Well, I think it'd be interesting to see what Mr. Lung Specialist Man has got to say, see if it's anything to do with your respiratory system, but I do think this is all pointing to a Chronic Fatigue Syndrome, M.E. illness".



Me: "Yes, that's what I feel" (makes 'I agree with you' face). Are you able to refer me to the CFS Clinic? (switch to 'hopeful' face)"



Mr. GP Man: "How long has it been now?"



Me: " Three and a half months. Nearly."



Mr. GP Man: "Ah, it's not quite long enough (makes 'I'm sorry for the poor state of affairs surrounding referral of M.E. patients, but don't shoot the messenger' face) I'm afraid. It's six months, isn't it?"



Me: "No (emphatically), it's four months now. Action for ME confirmed it for me via Twitter ('get me, I social network with major health charities' face)."



Mr. GP Man: "Four months? Ok, I'm going to refer you. They might come back and say it's too soon but I'm going to give it a shot" (cue the 'Hallelujah Chorus').



Me: "Brilliant! Thank you so much" (goes into 'thanking' overdrive at this point and have to restrain myself from hugging him).



The End.



Well not quite, he also signed me off for another two months, printed out a prescription, and said to come back and see him in January. Sadly, he didn't give me any chocolate. Bugger.

All in all, a fantastic, and totally unexpected, result. I knew he was one of the good guys, I just didn't realise he was practically the Angel Gabriel, in a cord jacket. I really wish that every M.E. patient fighting to be heard, to be taken seriously, could be under his care.

* Slight exaggeration.
** Names have been changed to protect their identity. Obvs.


                                                                       


                                                             





Tuesday, 27 November 2012

I said Doctor, Doctor...




Tomorrow, I have another follow up appointment with my G.P. I have lost count of how many times I've seen him in the past three months- I should probably take a tent with me, set up home there and be done with it.. If nothing else, I'm fully expecting to be on his Christmas card list by now.

Luckily, as I've said, he's one of the 'good guys' and has been nothing but thorough in his investigations and consistently sympathetic to my plight.

So, it's with interest, that I shall make my way to my latest consultation with him. Of course, I'm still three weeks shy of the four month milestone, so I doubt I'll be receiving the official diagnosis tomorrow, or even a referral, but it'll be interesting to see what he's got to say when I regale him with what's been happening in the intervening four weeks since I last saw him.

I will, of course, keep you appraised of the latest installment in the tragi-comedy that has become my life.*







* If I remember. You know what my memory is like these days. Non existent.





                                                                 







What Katie's Doing Next...



It was early one morning last June; I was settled into my usual seat on the bus to work (third row from the front, in the middle, next to the window- in case you're wondering), about to open up that day's copy of the Metro. So far, so normal. 

That was, until I happened upon an article about a 21 year old University Student named Katie Huttlestone who, the month before, had been diagnosed with breast cancer.

I'll admit, it was the accompanying picture that immediately caught my eye. Now, I don't know about you, but it's not often I'm confronted with an image of a very pretty lady in a bright pink bra at 8am in the morning. 

I'm almost ashamed now to confess that my first thought was, 'gorgeous bra, I wonder where she got it?' followed swiftly by 'what beautiful eyes, I wish mine were like that'.

And then I read the headline. And the article proper. I was mortified at the shallowness of my initial response.

Here was a girl who had been told, just four weeks earlier, that she had breast cancer, had completed her first Chemotherapy treatment and was having to completely readjust to a new post-diagnosis life and what the coming weeks and months would hold for her, and I'd been wondering where she'd bought her underwear? I considered myself suitably chastised.

As I read further I was informed that Katie would be video blogging her experience of  fighting breast cancer, from diagnosis, through to treatment and beyond.

I was struck by her determination, her spirit and her wish to get it all out there, warts and all. 

Many people are still under the apprehension that breast cancer is an older person's disease. Nearly half of all cases, according to Cancer Research UK, occur in women aged 50-69 but, alarmingly, it's the most common cancer diagnosed in Britain in women under 39, and in the 20-24 age group there are an average of 31 cases diagnosed per year.

The idea that it doesn't strike pre-menopause is outdated and fallacious. As Katie is testimony to.

I got off the bus that morning, and carried on my day, but Katie's story stuck with me- I too was in my 20s (albeit the wrong end of them!) and it really struck a chord with me. I vowed to look up her videos, after all, it was the least I could do, plus, she was more far far more of an inspiration to me (and many others) than any talent-less wannabe z-lister could ever hope to be.

Her video diary was honest, brutal and incredibly moving. As promised she pulled no punches, and it was incredibly refreshing to find an account of serious illness that was open, candid and completely unsanitised to spare the sensibilities of folk who would prefer such things be kept hidden away, behind closed doors. To them disease and disability is something that doesn't happen. The body beautiful should be just that: beautiful. No imperfections, no blemishes, no inadequacies. And, certainly, no cancer.

But Katie paid no heed and her diary was a revelation. I checked back as often as I could for updates and I often wondered, over the following year, how she was getting on.

One mastectomy, reconstructive surgery and several rounds of Chemotherapy later she is on fighting form. When I joined Twitter, her's was one of the first names I searched for. And this, dear readers, brings me to the present day.

It's through following Katie (and no, not in the way that might require a restraining order!), that I have learnt of her latest endeavour. Kate's Cleavage is her frank and captivating memoir about living with and battling breast cancer at the age of 21. As with her video diary, Katie's warmth and wit are evident by the bucket load and it promises to be a fascinating and life-affirming read. The twist? (you didn't see that coming, did you?) Kate's Cleavage is due to be published by Unbound. A site that, in it's own words:


"allows you to listen to their ideas for what they'd like to write before they even start. If you like their idea, you can pledge to support it. If we hit the target number of supporters, the author can go ahead and start writing (if the target isn't met you can either get your pledge refunded in full or switch your pledge to another Unbound project)."



Kate's Cleavage currently has 10% of the pledges needed to get it published. It needs 441 more. And this is where you come in. It would be a travesty if it was unable to reach its pledge target and not find it's audience. It's such a unique book, such a unique project, and for such a vital cause, that I firmly believe anyone who can do, should support it.

You can pledge from £10 up to £100. The higher the amount you pledge, the greater the rewards for the Pledgee.

Instead of picking one of the usual suspects from the traditional pre-Christmas literary offerings (I'm looking at you Jamie Oliver), why not pledge towards the publication of Kate's Cleavage

If you'd like to pledge, you can do so here: Unbound- Kate's Cleavage.

Tell your friends to pledge, your family, your distant cousins in deepest darkest Outer Mongolia, even tell your Postman. In fact, stop strangers in the street and tell them. OK, maybe not that last one, but if you can get the word, and the link, out there, please do.

I know that Katie will thank you for it....









                                                 






















Monday, 26 November 2012

Baby we were born to run, but not anymore.

Apologies to The Boss for the butchering of his lyric, but it sums up perfectly how I feel today.

I haven't, up until now, let M.E. get me down. Having lived my whole life with a chronic illness, I figured what's one more, and have generally eschewed panic and self pity in favour of pragmatism. Keep calm, carry on; normal service will be resumed shortly, we just don't know when.

However, for some reason, today has seen something of sea change. I feel as if I should be running, should be out there dancing, laughing, living. As I enter my fourth month with this illness I'm beginning to feel somewhat like a bird who has had his wings clipped.

Which is odd. And somewhat unexpected. Even before I became ill, I was never what you'd call an adrenalin junkie, I was never one of life's big risk taker's or social animals. In fact, I'll be honest, I couldn't even really run. Having a 35% lung capacity does tend to put paid to any dreams of becoming the next Mo Farah, unsurprisingly (although I can do a mean Mo-Bot, every cloud...). But, at least I'd had the energy to just about attempt a fast walk for the bus.

Now, though? Even walking is a challenge. Sure, the mechanics all work: I can put one foot in front of the other still. But the energy required to walk anywhere, no matter how short a distance, is energy I don't really have anymore.

So it's funny that, all of a sudden, I should want to run. To sprint. To race. To just run, and run and run.

It's as if today I've only just realised how limited I've become. Maybe I hadn't noticed before? Maybe I hadn't wanted to. That old cliche of not knowing what you've got until it's gone was surely created for those living with M.E. 

I never knew I had wings, until they were clipped.








Sunday, 25 November 2012

It's beginning to feel a lot like That-Time-of-Year-That-Shall-Not-be-Named...

I have great pleasure in reporting that it's exactly four weeks until the big day. You know, the C word. And? I. Am. Excited.

Yes, yes, I know, technically it's still only November. But, did I mention, it's only four weeks away?

My fingers are positively itching to fire up my iTunes and break out Chris Rhea, Andy Williams, Wham, and, er,   whisper it, Cliff Richard. Ahem.

However, I'm trying  to be good (and boy, is it a challenge) and hold off until the 1st of December. For that, dear readers, is the all-important date when it becomes socially acceptable to openly celebrate the season.

Until then, early adopters of the festive spirit are widely vilified and we are left with little choice but to conceal our 'heretic' ways, lest we get pelted with rotten mince pies or water-boarded with the dregs of last year's mulled wine.

You think I'm kidding? You try blasting out a bit of "All I want for Christmas" and see where that gets you. Removed from several Christmas card lists and widespread condemnation, that's where. Oh, sure, it's alright for the retail world to get their Christmas on early- in October, these days, it would seem. I'm just waiting for the inevitable: when the decorations go up the day after Mid-Summer's Eve, mark my words it'll happen- but woe betide any mere mortal who has the same idea.

Anyway, I digress...

Today? It really felt like Christmas was in the air. The Red Cups were in Starbucks, the obligatory tawdry decorations were strung up overheard, and Johnny Mathis was crooning over the sound system.

Perfect.

Just six more tantalising days until I can come out of the Christmas closest. Sequinned Santa hat and all...




                                                                       




Saturday, 24 November 2012

Supermarkets: Not So Super. Fact.



I managed to venture into our local supermarket today. Hurrah (in your face M.E.). Although? I really wish I hadn't. I don't know what is is about them but they never fail to bring out "The Rage"  in me.

Actually, I lied. I absolutely know what is about them: the people. Does something happen, at a fundamental level, to their DNA when they step over the threshold? They may be perfectly pleasant, considerate citizens at all other times but, as soon as they set foot in Sainsbury's/ASDA/Tesco etc.., BOOM, they've transmogrified into total utter cretins who's sole existence revolves around bringing certain misery to your shopping experience.

Ladies and Gentlemen of the Jury, I give you:


  • Hovering metres away from the shelf you're trying to get to, blocking access for everyone else.
  • Trolleygaiting.
  • Stopping dead in the middle of an aisle for no apparent reason, so that you're forced to manoeuvre around them, or risk a multi-shopper pile up.
The last one in particular really gets my hackles up. Why, why, why? I understand everyone has to stop and have a little run through their mental shopping list every now and again (Outer Mongolian Yak's milk! I knew I'd forgotten something) , but why do they insist on doing so smack bang in the middle? Is there some sort of magnetic force underfoot rendering them incapable of moving from that exact spot?

Of course, I'm far too British about it and, rather than pointedly and audibly asking them to shift their derrieres, I merely mutter words of contempt under my breath and awkwardly wheel my trolley out of their way.

What's the supermarket equivalent of road-rage? Whatever it is, I get it. By the trolley load. Clearly, there's nothing for it, I'm just going to have to cease shopping in these places altogether, otherwise, one day, I might just snap and be forced to commit murder. With a carton of Outer Mongolian Yak's Milk.


SOCO to Aisle Nine......






Friday, 23 November 2012

Brown paper packages tied up with strings...

Aside from the frequently aforementioned tea and cake, I thought I'd share with you a few of the other things in life that I'm partial to. In list form, of course.  In fact, I should probably put 'lists' on the, er, list shouldn't I?

Oh and, don't worry, there'll be none of that bright copper kettles (really, Maria? Copper Kettles?) or wild geese flying with the moon on their wings malarkey.

Although, come to think of it, I do always appreciate a nice pair of warm woollen mittens...





Chocolate
Pâtisserie
Cosy knitwear
Pyjamas
Throws and Blankets
Pink Rosé Champagne 
Ballet
Tattoos
Piercings
Carousels
Toasted Marshmallows
Sparklers
Typography
French cinema
The French language
 Paris
 The Eiffel Tower
France (sensing a theme yet?)
Pen and ink line drawings
Lomographic photography
Black and white photography
Vintage clothing
The 1950s 
Starbucks Red Cups
Starbucks Strawberries and Cream Frappuccino
Lebkuchen
Fairy lights
Snow
Rollerskating
Musical Theatre
Audrey Hepburn
Scandinavian style home décor
Vintage style home décor
Christmas
Hot chocolate with whipped cream and mini marshmallows
Big mugs
Polka dots
Breton tops
Black skinny jeans
Sushi
Old photographs
Chip shop chips
Pick 'n' Mix
Matryoshka dolls
Hot water bottles
Lie-ins
Book
MAC makeup
BeneFit Makeup
Red lipstick (MAC's Dubonnet. Swoon.)
Coral Lipstick 
The scent of Cinnamon 
Roaring open fires






Favourite Things...







   Yours?
                           
         





Thursday, 22 November 2012

Me, Myself and M.E...

As mentioned in my introductory post I live with several chronic health conditions, one of which  is Myalgic Encephalomyelitis (M.E.) and, as I'm currently experiencing an impressive bout of M.E. related insomnia, this seemed like a pertinent time to formally introduce it.


Readers meet M.E, M.E. meet my readers... don't worry, it doesn't bite, well, not anyone else at least. Oh and it's not catching either. Just to clear that right up.


I have been suffering from this disease for the past three months (or, to put it another way: 13 weeks, 5 days and roughly 2.5 hours). A long time, you might think? You'd be wrong. Very very wrong.


Here's the rub: although my symptoms point to M.E, my GP can not officially diagnose the condition until they have persisted for four months. This is in accordance with current NICE (National Institute of Clinical Excellence) guidelines, which can be found here should you wish to have a gander.


In 6 weeks, 1 day and 21.5 hours, I will reach that 'hallowed' (I use the term loosely. Very loosely) milestone. I will be official. Hurrah! I'd throw a party. If I had the energy. Oh, cruel irony.


Now, I'm lucky in that I have a fantastically sympathetic and forward thinking GP. He stated in a previous consultation that if we had a better healthcare system (his words, not mine. In spite of the backwards logic of NICE, I am not a pitchfork wielding, card carrying NHS detractor, quite the opposite in fact), he'd refer me to a local hospital's CFS/ME clinic and to hell with the guidelines. But, them's the rules and four months it must be.


The promise of  attaining this magical threshold (again, tongue firmly in cheek), however, doesn't make living with the symptoms any easier to bear in the meantime.  And, of course, being unable to secure a formal diagnosis for something you're clearly presenting with, until a seemingly arbitrarily defined point in time, does feel like a somewhat perverse slap in the face. For, as our esteemed friend Mr. Shakespeare once said: what's in a name?


Speaking of names, there's a lot of contention in the medical world about what this condition should actually be called. Is it M.E? Is it Chronic Fatigue Syndrome? Is it Post Viral Fatigue Syndrome? In the interests of clarity and, because I refer to it as M.E., we're going to stick with that. It would get far too confusing otherwise, trust me.


Yes, nothing about M.E. is straightforward or cut and dried. The name, the classification, even the symptoms themselves all seem open to interpretation and argument. Nothing is agreed upon and everything is vague (to monstrously paraphrase Kurt Vonnegut, apologies Kurt).


The World Health Organisation (WHO) classifies Myalgic Encephalomyelitis in it's International Statistical Classification of Diseases and Related Health Problems (catchy, huh?) as a disease of the nervous system. It's official listing is: G.93 (Other Disorders of the Brain) > G.93.3 Postviral Fatigue Syndrome > Benign Myalgic Encephalomyelitis.


See, what did I tell you? Even WHO (insert British 60s Mod-Rock band associated joke here) can't agree on a name. But at least they have decided it's a disease of the nervous system. I believe there was a time when it was unofficially classified as a psychological condition but, thankfully, they saw the error of their ways and it was reclassified as neurological.


As I say, not all symptoms have been unanimously agreed upon within the medical community,and with symptoms changing day to day, and patient to patient, it's very difficult to get a firm grasp on what constitutes this neurological disorder.


The NHS Choices website lists the symptoms as thus (although they refer to it as CFS. Bang goes my clarity endeavour):


Fatigue

The main symptom of CFS is severe fatigue (exhaustion) following mental or physical activity. This does not go away with sleep or rest, and limits your usual activities.
Fatigue is mental as well as physical. Some people describe it as overwhelming. You may feel that:
  • It is a different type of tiredness from what you have experienced before.
  • After sleeping you do not feel refreshed.
  • It is not due to exhaustion.
  • It is not simply a loss of motivation, which people with depression often experience.


Exercising can make symptoms worse. This is called post-exertional malaise, or "payback". The effect of this is sometimes delayed. For example, if you were to play a game of sport, the resulting fatigue may not develop for a few hours afterwards, or even the next day.

Other symptoms

There are other common symptoms as well as fatigue, although most people do not have all of them. They include:
  • muscular pain, joint pain and severe headaches
  • poor short-term memory and concentration, and difficulty organising your thoughts and finding the right words ("brain fog")
  • painful lymph nodes (small glands of the immune system)
  • stomach pain and other problems similar to irritable bowel syndrome, such as bloating,constipationdiarrhoea and nausea
  • sore throat 
  • sleeping problems, such as insomnia and feeling that sleep is not refreshing
  • sensitivity or intolerance to light, loud noise, alcohol and certain foods
  • psychological difficulties, such as depression, irritability and panic attacks
  • less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature.


Me, personally? I 'enjoy' the dubious company of:


  • Extreme fatigue (natch).
  • A recurrent sore throat and/or swollen glands. 
  • Bi-weekly headaches (difficult to describe, but they're lower in my skull than any other headaches I've had).
  • Dizziness (of the common garden, 'oops, I feel like I'm about to fall over' variety)
  • Vertigo (or what I have termed: the 'Boat Feeling'. In fact, I've turned it into an adjective, as in: I feel 'boaty'. A nice shorthand way to inform my partner that I feel like I'm on a moving waterborne vessel. When in fact I'm not. Unless, of course, I actually was, in which case confusion would reign. Anyway...).
  • Aching joints.
  • Aching muscles.
  • A general 'virusy' feeling (you know that aching and weak feeling you get in your limbs when you have a virus or heavy cold? Well I have that near enough permanently. Yeah, sucks to be me.).
  • Insomnia.
  • Excessive sleeping (Hypersomnia to give it it's correct name). 
  • Nerve pain (this is the newest one and possibly the least fun of the lot. I feel like I'm being jabbed all over by a microscopic red hot needle).
  • A tingling/crawling sensation on my skin.
  • Itching. Mainly hands, arms, legs and feet. But wherever I've got skin really, which would, erm be everywhere I guess.
  • Brain fog. That is, difficulty in thinking of words, forgetting what you're saying mid sentence (I do this a lot) and general poor cognitive performance.
  • General feeling of being unwell.
  • Sensitivity to certain foods.
  • Gastro-Intestinal problems.
  • Reduction and/or total lack of appetite. I used to eat like a stable of horses, never mind just one.
  • And last, but by no means least: No energy. None at all. Ok, maybe a little at the start of the day (which at the moment is around 2.30pm, that's the dastardly Hypersomnia for you) but as soon as I do anything more taxing than wash some dishes it's gone. And even then, I have to take my time. I scrubbed a pan a little too vigorously not that long ago and then had to lie down to recover. True story.


Some of the symptoms on the list I've been able to identify as my base symptoms (the fatigue, general malaise, lack of energy, weakness) and others will manifest themselves at any given time. Sometimes they'll come and go within the same day, sometimes they'll linger for a few days and return a week or so down the line.


So, that's my M.E. Written down in black and white, it doesn't sound so bad, but trust me it is. Not to be too histrionic here, but I've been robbed of my freedom, my salary, my health (and I didn't  have much of that to begin with, but that's another story for another day!) and, well, my life really. 


And I'm one of the lucky ones. Yes, I've been virtually housebound since August, yes there are days when all I can do is sleep and I don't have the energy to lift a fork to my mouth to eat, and yes I am so very very tired all the bloody time but there are people with this condition who are bed bound and unable to do a single thing for themselves, there are people who have died


M.E. is a cruel and unforgiving mistress of that it can be agreed upon. 

If there's one thing we ask of you: please do not dismiss us. We're real and so is our condition.


 It's always been viewed in the general consciousness as a rather vague, indeterminable illness. And of course, what one doesn't understand, one tends to undermine or belittle or worse, ignore altogether. Thus insults such as "yuppie flu", "malingerer" and "lazy" were able to flourish. And those living with the disease had to (and still do, I'm sorry to say) contend with offensive, often hurtful, remarks and attitudes on top of everything else.

A good support network is vital when living with any chronic illness I think, but all the more so with regards to M.E. due to the controversy and confusion it has attracted over the years.

When living with a condition as contentious as this, having those you love understand (as much as they can) and support you is paramount. You're going to need them, whether you like it or not, and knowing that you've got people in your corner is a small but important victory in this battle.

I am blessed to have a fantastic family, boyfriend, and friends (oh God, that sounds like a boast, it's not. Honest), who have supported me unfailingly during the past three months. From my Mum and my aunts taking it in turns to push me around in wheelchairs, to my boyfriend taking on all domestic duties chez nous, giving me many many hugs and generally being my rock, to my Brother who has taken everything in his stride but now checks in with me more than he does with the parental units, to my Dads (no, that's not a typo) who have organised wheelchair hire and offered advice and vociferous encouragement, to my friends who have been at the end of the phone, emailed , texted, or visited; bringing with them gifts (usually of the chocolate variety - it must be said), tales of the outside world and laughter.

Thankfully, also at my disposal, is a veritable wealth of online support and information for those with M.E. -compared to the dark days of the 80s when ignorance abounded.


Here are just some of the sites I've found invaluable:


Twitter, too, is unbeatable for connecting you with fellow sufferers.
I follow the brilliantly informative and pro-active:

  • Action for Me- @actionforme
  • ME for M.E.- @ME_forME
  • ME Association- @MEAssociation


So there we have it, M.E. and me... my experience, in my words.

If you think you may have the condition please consult your Doctor and he/she'll be able to discuss your options with you. Although I'm not qualified to diagnose your symptoms, I'm more than happy to chat about them with you, and answer any questions you might have regarding my experience of M.E.








       
                            
                            

                                                             

                                          



















A call to arms and to keyboards...

Stephen Fry has just drawn my attention to this on Twitter: 


I have signed. 

Please, for the love of whatever deity you may or not believe in, sign. If you are atheist, sign. If you are agnostic, sign. Whatever creed, colour, orientation you are, sign.

How this penalty has even come this close to being a reality, to being passed (the last time I checked it was the twenty-first century, not the dark ages), is utterly incomprehensible.

The people behind this penalty make me ashamed to be a member of the human race. There is nothing humane about them. They are barbarians.

It is vital that this petition, and recognition for Avaaz's work, is spread far and wide. Twitter, Facebook, Email, Blogs... it doesn't matter. Share, share, and share again.





It's my party, and I'll dream if I want to...

As it's my 30th birthday in a little under three months (eek, how did that happen?) I thought I'd create a Polyvore of my absolute dream wishlist.

Of course, I don't for one second expect to actually get any of these lovely lovely things but, if by some incredible chance, my  boyfriend or family become multi-millionaires between now and the 19th of February, I certainly wouldn't be adverse to receiving something from this little lot.



My 30th Birthday (Dream) Wishlist





                                                 
                                             


Send her victorious....to Bristol!

Now it's no secret  among my friends and family that I'm a bit of a Royalist but, it must be said, much of the reason for this is my admiration of, utter respect for, and pride in Her Majesty the Queen. 

I'm rather ambivalent about the rest of the Royal Family (aside from Prince Philip, naturally) and find many of the younger generation rather uninspiring and insipid. This is, of course, in my humble opinion and I'm sure they're very charming and affable in actuality, but I just can't warm to them. My loss, no doubt.

There's something about Elizabeth II that, for me, is the embodiment of dignity, composure and our country's spirit. She is the poster girl (well, Octogenarian, but let's be polite) of the Keep Calm and Carry On philosophy; for over sixty years she has kept calm and carried on reigning with dignity and an unfailing (and laudable) sense of duty.

And so, I was bitterly disappointed to be reminded (via Twitter, where else?) that she was visiting our fair city today (and looking very stylish in a bright fuchsia coat and hat, I might add). Not only had I forgotten (bad Loyal Subject), but I wouldn't have been able to venture out to get a glimpse even if I'd remembered. 

For any fellow Bristolians who couldn't spectate, The British Monarchy website have helpfully created a blog on the visit, which can be found here.

Apologies Ma'am and I hope you had a splendid day- terrible weather notwithstanding.









An Interest in Pinterest...

Again, like with Twitter, I'm a bit late  in realising the wonderfulness of that little site known as Pinterest. I joined yesterday and thought I would never leave: Goodbye Twitter, Goodbye Blog, Goodbye Amazon (other online mega-retailers are available), Pinterest is my Master now.

I did, however, manage to escape, but not before getting stuck into creating a 'Body Art Inspiration' board. 

I think I am in danger of whiling away many an hour on there just riotously pinning every pretty picture I can get my hands (and keyboard) on.

It's such a simple but effective concept: an online pinboard community. The wealth of creativity and inspiration is endless.

I love too that you can upload 'Pins' from your computer. I'll be able to clear some much needed space on my hardrive and get all current style files online. Technology, eh? What a wonder.

Oh, I've added a Pinterest button to my profile should you feel inclined to join me there, or just have a nosy around my boards. As it were...










Wednesday, 21 November 2012

God Bless Twitter and all who sail in her...

I am a fairly recent newcomer to the social networking phenomenon that is Twitter, but I already have rather a lot of love for it. A lot.

Meeting wonderful, inspirational and devellishly witty people; being able to connect with the outside world whilst not actively participating in it myself (because I'm pretty much housebound right now. Gee, thanks M.E.); stalking  following my favourite celebrities...

But, the best thing about it? The speed of the thing. Witness: mere seconds after Tweeting, asking where I could get my hands on some Chilli Popcorn, an all natural popcorn company replied to me to kindly inform me that they sell not one, but two varieties of Chilli popcorn. Amazing.

Twitter and Corn Again* I salute you.






*And, no they didn't ask me to promote them. I'm doing it because I'm nice like that. Sometimes.






A little perk me up...

Because it's not been the best of days today (itchy, tingly skin, anyone?), and because there's only five weeks until Christmas, I've cheered myself up by putting together a Polyvore collage of my beauty wishlist, should Santa be feeling particularly generous.
My Christmas Beauty Wish List


I would have added MAC Eyeshadow in Satin Taupe (mine's all in bits and looking very sorry for itself), but I couldn't find it. It is, however, on the list I've written down. Not saying I'm a fan of lists, but...

What are you hoping the man in the red suit brings you?


Is this thing on...?

So.  First of all: introductions. I'm Jen, I'm 29 I'm based in Bristol and I'm a bit of a tea fiend. Pleased to meet you!

This is my little corner of the big ole' world wild web (does anyone actually call it that anymore? Apart from me, clearly...)

I live with not one, not two, but three chronic health conditions COPD,  Myalgic Encephalomyelitis and Asthma. In my case, three's definitely not a charm. More of a curse, I'd say but such is life. I carry portable oxygen with me wherever I go (which isn't very far these days, thanks to the M.E.) and have to inhale several different drugs (of the legal kind, I hasten to add) on a daily basis. 

Naturally, I will be talking about these conditions here, the impact they have on my life, and any issues surrounding them in the media, but rest assured: it's not going to be all doom and gloom!

Oh, no.

I plan to mix it up a little and throw in some beauty news and reviews , fashion and style chit chat, home decor inspiration, general musings, and anything else that piques my interest or catches my eye.

So, consider It's Not All Me, Me, Me... a tasty slice of 'Beauty, Health and Lifestyle' flavoured pie. Or, you know, don't. It's entirely up to you.

J x