Reblog ... The FibroFrog: That Feeling Of Helplessness

To say I can relate to this is an understatement ...

The FibroFrog: That Feeling Of Helplessness: That photo quote above, pretty much says it all right now.  I feel like whatever I do doesn't matter.  I feel like no matter how ha...

Reblog ... Realfare: Universal Basic Income

The more I read about UBI, the more I think it's a good idea.  Not because, as much of the media and government will say, it is something for nothing, but because it is something for everyone.

Those who still want to work their 40, 50, 60+ hour a week jobs can.  Those who want to have lives of luxury, full of the latest designer everything, can still work to achieve that.

But those who can't, or would prefer not to, work those kind of hours can reduce them.  Those who don't look for the material in life, but the personal, the spiritual, the familial, those who are happy living on a basic income, could even quit the 9-5 world all together.  Instead they could, and would, oh let's think ... be a parent, write a book, create the next big invention, plant a forest, enrich others.

The future, we all, know is changing, and we have to change the way we think to survive it.  There won't be enough jobs as technology keeps improving ... there aren't now if the figures are to be believed ... I have seen more than one blogged report in past months showing that there are many times more people unemployed than there are jobs being advertised.  Full employment is a pipe dream.

Instead we should start looking to other ways in which we can improve ourselves, and the world around us.  Give the thinkers time to think, give the carers time to care, allow the artists the chance to create beautiful things that we can all appreciate.

Yes, I'm sure, especially at first, there will be some who just do not work, who do nothing at all.  It is a fact of the human persona that some people are like this.  But even they will get bored eventually.  Even they will wake up one day and long for something more ... because that is also part of being human.

But even if they don't, that is their choice.

http://realfare.wordpress.com/2014/08/14/6-ways-of-progress-the-universal-basic-income


Think on it ... what would you do with your life, if you had the absolute choice?

Reblog ... Purple Persuasion ... On Seeking Help

I know I've done a lot of reblogs recently, but others are managing to say things that I cannot find the words for at this point in my life.  Charlotte Walker's tale here of her many attempts to get help throughout her life sounds so familiar.

I don't claim to suffer from mental illness to the degree she does, but I do have long term depression, and I also have a physical illness that for many years was considered to be 'all in the mind' by many, and in fact has only this year been given a name of any kind for me, despite them both having affected my life for a quarter of a century.

I too was in my early teens when things first started.  I too have had the 'puberty, periods, hormones, pregnancy, women's problems' excuses thrown at me.  I've been told it 'can't be that because you know too much about it'.  And I've also had diagnosis changes thrown at me with no warning, sometimes varying between the actual conversation with the specialist, and the report they then send my GP.

The battle to get help, to discover what the true issue really is, to be believed ... all slotted into periods where the illness is not too bad, but also not too good, so that you are physically and emotionally able to seek help in the first place, and yet not appear 'too well' and hence be written off at the same time ... is an ongoing struggle that all too many are unable to maintain.

http://purplepersuasion.wordpress.com/2014/08/12/on-seeking-help/

Reblog ... The FibroFrog: Isolation

This ... just this ...



The FibroFrog: Isolation: Sometimes, I feel as if I'm stuck inside an isolation tent.  Or, like I'm the boy  girl in the bubble.  This illness is relentl...

Reblog ... Rolling with the Punches: Disability Prejudice really does exist

It's the little things ... and the big things ... but until you experience them, you don't realise ...

Rolling with the Punches: Disability Prejudice really does exist: I will never forget Michael Portillo's interview of disabled comedian Francesca Martinez in which she raised the issue of disablism and ...

Get your motor running ...

I dithered and procrastinated for quite some time over taking the next step in that slippery slope to admitting I'm truly disabled.  Having to use a stick before I'm even 40 is bad enough, but a mobility scooter?!  Even the kids didn't like the idea.

So I looked around for other options, and came across electric assisted bikes, or to be more precise, tricycles as my balance hasn't allowed me on a two wheel bicycle for many a year.  I priced them up, got myself all excited with images of a carefree free-spirit me gliding along the the local roads with the wind in my hair like some dodgy 80s shampoo or female sanitary item commercial (complete with the romantically blurred images), and after many false starts and dead ends, actually tracked one down that I could test ride.  Only problem was, when it came to it, I couldn't ride it ... I was too high up, my balance kept telling me I was falling over when I wasn't, my hands didn't like operating the twist grip, and a top speed of 15mph just downright scared me.

So, I went back to the drawing board.  Through my hunt for the trike, and my daydreams, I'd come to realise that transport was no longer a like, it was a need.  A scooter it would have to be.

I ended up with one at the upper end of the small scooter price range, because it does what I need it to do.  It's a TGA Minimo, and it folds up in one single piece to about the size of a suitcase so that it can be taken onto public transport and the such.  There are other scooters like this on the market, most notably the Luggie, and I did test ride one of these too.

My main reason for choosing the Minimo was its one-operation collapse.  The Luggie, whilst maybe being even smaller and more portable once folded, and having slightly different, and for some people easier, tiller controls (using fingers, not thumbs, on the levers), has a folding operation of several actions, some of which require bending, which wasn't for me.


I've only had my little scooter a week, but already it's worth its weight.  It's not made for yomping through the fields, it's got a fairly low ground clearance and a 4mph top speed, but it handles the rough pavements round here pretty well, there's only been one (badly laid) drop kerb it couldn't handle, and unlike some three-wheelers I've seen around, it doesn't try to tip over at every chance.

Earlier in the week, I got to the local shops in the village, and back again, in the time a one way journey would take on the bus, and with far less pain and fatigue, let alone fear and worry about whether I'd actually get home or not.  I've been able to book a long weekend at the seaside knowing I won't have to let the kids down halfway through because my legs wouldn't carry on.  And I've just now got home from a nice summers evening at the local park.



As the famous advert goes ... Walking stick £15, electric scooter £1500, being able to take your kids to the park for the first time in over three years, priceless.

Glenda Jackson's speech about Iain Duncan Smith and the DWP

I'm a little late in seeing this myself, but it's well worth the 5 minutes of your time to see a politician who actually has a clue ...

https://www.youtube.com/watch?v=9Jckm3X5MXo

Reblog ... BBC and press ignore massive demonstration against austerity in London

http://tompride.wordpress.com/2014/06/21/bbc-and-press-ignore-massive-demonstration-against-austerity-in-london/

And here's a later blog proving that the beeb don't want to talk about it ... even though Al Jazeera and even the Russian media do ... http://mikesivier.wordpress.com/2014/06/21/ask-the-bbc-why-it-didnt-cover-the-anti-austerity-demo-heres-what-you-can-expect/

Oh, and it's worse than you might think ... the beeb knew it was on ... the march started outside broadcasting house (or whatever the new place is called) and apparently they (the bbc) even laid on extra security around their site because of it.

Reblog ... Why the Government Doesn't Want To Solve The Housing Crisis

Well presented and notable commentary on the reality behind the headlines ... http://realfare.wordpress.com/2014/06/17/why-the-government-doesnt-want-to-solve-the-housing-crisis/

Depression … it sneaks up on you

About 18 months ago, I was (finally, after breaking down in the surgery after a simple ‘how are you’ question) diagnosed with either severe depression, or when it came to writing my ‘fit’ notes, low mood.  Which is it?  Well, the only question on the test I could ever answer with a positive slant (and this was true for years before my diagnosis too) was the suicidal one, so you decide.

I was put on meds, but only a low dose, so it never really felt like it was doing anything except maybe control the weepiness at times.  I told my GP this several times, only to be told to stay on them a few more months.

When ‘he’ left, and mum died, all in the space of a few days, I was in such an odd state of mind that taking tablets was the last thing I could concentrate on for about a month, so I accidentally came off the meds.  And for a couple of months, I didn’t feel any different.  In fact, if anything, I felt better than I had for a while.

But not anymore.

Now, the instant crying at nothing is back, the feelings of not wanting to do anything, the inability to find pleasure, the struggle to be around others, to deal with noise.  I’m jumpy, but at the same time slow to react.  I’m needing support, but at the same time can’t be near or cope with others for any length of time, even in the virtual world.  I’m unsettled, but at the same time, unable to do anything.  My appetite is all over the place.  I can feel fine and wanting, eager even, to do things one minute, and literally in the next breath, I shut down.

Is it the pills finally clearing my system, or is it that the adrenaline or whatever that’s kept me going since February has finally run out?  I don’t know.  But I do know I can’t get an appointment to see my GP for weeks yet.

It sneaks up on you, depression does.

Reblog ... Diary of a Benefit Scrounger: How do you really practice patient centered care?

"If a human has been broken by the incredible challenges of living with a long term serious illness, it's easy to judge. To believe we would have been stronger, coped better. It's easy to separate patients into deserving and underserving based on their responses to what we sometimes forget can be extreme suffering. It's easy to judge their lives as we judge our own, forgetting the million tiny challenges the patient faces every day that we don't ever need to even consider. We might treat the pain, or clean the wound or prescribe the treatments, but we may never know how hard it is just to make a cup of tea or hold your own children when they cry."


Diary of a Benefit Scrounger: How do you really practice patient centered care?: One of the great disconnects between doctor and patient is the difference between "learning" and "knowing". A competen...

D-Day and my Grandpa

Ernest Henry, known to all as Harry, but always Sonny to his mum, my grandpa, was one of the best examples of a man, an alpha male as so many of my writer friends would put it,  that I ever knew.  He was the man who showed me what a proper relationship should be like, what a man should be.  And this time 70 years ago, he was in a tent in a field somewhere in southern England, about to experience his first taste of action in World War 2.

Born in 1924, he was too young to sign up at the start of the war, so instead volunteered as a messenger for the ARP.  In fact he met my grandmother that way.  The tale was always rolled out about how he’d volunteered to walk her home one night, and broke her mother’s best jug on the way.  (Great Gran still liked him though, they had a great relationship and she lived with them for many years). 

He signed up as soon he was old enough and began his service guarding prisoners of war in this country.  We don’t know much about this period of time, but do know that he was mobilised for D-Day.  He once spoke of the sight that met him when he and his unit were taken down to the south coast, of driving past field upon field of assembled men, supplies and equipment.  He wasn’t in those famous first waves, but, being in the Signals, came in as support, landing at the Mulberry harbours on D-Day+3. 

Once in Europe, he was then stationed on, and in advance of, the front lines for much of the war, laying and maintaining communication lines throughout France and Africa (that I know of).  Whilst in France, he was initially billeted with a local family for a while, and he and Grandma maintained contact with them throughout their lives.

Like so many others though, he never spoke of what truly happened during the war, not to Grandma, the rest of his family, or anyone else.  Then a few years before he passed on, he suddenly turned around one day and told some of the stories, of getting shot at by snipers while fixing lines at the top of a telegraph pole, and of watching his friend, who was also up the pole with him, being killed inches from his face.  He said he’d never gone down a pole so fast, and it's almost impossible to imagine the fear and shock that would have been coursing through him at that time.  That was the only time he opened up, he never spoke of it again.

We do know that on one occasion whilst in Egypt, he shared a plane with Monty.  How that came about I don’t know, it must just have been one of those limited transportation things.

He was in Egypt towards the end of the war, and told the tale of how he thought he was just coming home on a short leave.  He had the choice of filling his kitbag with tinned food for his family who were living under rationing, or bringing home clothes and other items that he’d gathered, a lot from the Americans, whose kit was better quality than the Brits.  He chose the food, of course, and buried the rest in a tin chest before leaving.  He never went back though, being demobbed while he was on leave, so unless someone has dug it up since, somewhere in Egypt is a tin chest full of his belongings.

As so ended his war.  At least in the physical sense.  But, as with the majority of our soldiers, sailors and airmen, during that conflict and all others, the memories stayed with him his entire life.  

It’s strange to think that this may be the last of the major anniversaries where survivors of that war are able to attend.  I grew up with these people, I’m among the last generation to have done so fully.  But I’ll do my damndest to make sure I’m not the last generation to know their stories … even the small, seemingly historically unimportant, ones.

Your Ideal Reading List ... or Take Note Mr Gove

It’s in the UK news today, and apparently all across Twitter, that the Secretary of Education has rejigged what can be on the official examinations for GCSE English Literature (taken between 14 and 16 years of age).

His aim is to bring education back to the basics, which is an extremely laudable aim.  But on this particular subject, he seems to have it wrong.

“The new GCSE course will include at least one play by Shakespeare, at least one 19th century novel, a selection of poetry since 1789 including representative Romantic poetry and ‘fiction or drama from the British Isles from 1914 onwards’.”

As you can see, whilst he’s trying to bring back traditional literature, and remove some of the junk that’s seeped into the reading lists of late, he has actually ended up effectively making it impossible for a wide swathe of modern classics … think Steinbeck, Miller et al … to be taught.  Why on earth should our children only be able to read British authors from the last 100 years, when there have been so many beautifully crafted works produced all over the globe (tut tut Mr Gove, D-, go back and rework that piece).

Also, isn’t it just a little bit jingoistic, especially in this modern global world?

For me, I loved studying Steinbeck and Miller (and I’ve recently begun to reread them again, a quarter of a century later), Wilfred Owen’s poems were haunting, and I even enjoyed Macbeth. 

But on the whole, English Lit at school turned an avid reader into a reluctant reader, with its insistence that every text be ripped apart and analysed for meanings that even many authors deny exist.  And some of the modern texts we were given to study were atrociously poor and instantly forgettable.  But the teachers liked them, because they were simple to teach.  On the one occasion we were allowed an open choice essay, I recall asking to write mine on Pride and Prejudice, to be told that it was too advanced for my age (I’d read it three times at home by that point).  And yet, another teacher that same term gave us Tess of The D’Ubervilles (which in terms of content was far more advanced) to read, not for English, but for RE/Moral Studies.

So, on to the aim of this blog … the article got me thinking, and so should you.

What were the books you loved back when you were 14, 15, 16?

Did you read something at school that stuck with you, or was school having the exact opposite effect and your pleasure reading done independently?

What would you recommend as ‘necessary’ reading to a teen of today, or anyone for that matter, both the willing and unwilling reader?

And which of those titles or authors would/have you carried through life with you?

Big Changes, and Realisations

Yesterday, the day after I wrote about my health diary, I had an assessment with ATOS, the government’s medical benefits examining contractors.  They decided, despite all re-tests apparently no longer happening, to re-test me … lucky me.

I was nervous … I know I’m worse, not better, than when I last saw them, but … this time, I was going alone, would they count that against me when my award says I can’t go out alone (even though it was not by choice, and I had door-to-door transport both ways).  This time I’m looking after my kids alone … will they count that against me, or worse, will they make notes of how little I do for them and how much they do for me, and report me to social services, giving them to him.  And last but not least – will I get one of those examiners who really doesn’t believe anyone should be getting benefits, let alone someone with an illness such as Fibromyalgia, and be summarily dismissed.

As it turns out, my examiner seemed very good – thorough, communicative, nice even (I’m hoping that reflects in the end result).  What I did come away from the hour with was, yet again, a reaffirmation of what I cannot do.  Having to describe daily life to the last breath will do that to you … how you throw more fresh food away than you eat, for lack of ability to prepare it, or fogginess that simply makes you forget it.  How the laundry backs up, loads get washed 3 or 4 times before they make it onto the airer, the outdoor washing line hasn’t been used for aver 2 years so you got rid of it, because it was one more thing to dodge in the garden anyway.  How little you interact with the real world.

I also found some new things I can’t do.

A year ago, when they did the physical part of the test, I could (just about) touch all my fingers to my thumb, and I could lift both legs a little way off the table.  Yesterday, my left side was not responding at all … neither my left little finger nor the one next to it could find my thumb, and I barely got my heel off the bed.  That’s worried me … it’s something that, whilst I’ve been aware of for a while now, in that I often have to support my left side more, either by stuffing my hand in a pocket, or dragging the leg like a dead weight.  Even my typing is off – I often find myself having to correct more of the left hand keystrokes than the right.  I haven’t really let myself think too much about it though.  Maybe I should.

Then we come to this morning.  It’s been a hell of a long week, unwillingly out of the house 3 out of the 5 days, when just one of those days is more than I can really handle in a normal week, and a sleep pattern that’s all but non-existent.  That takes its toll.  I haven’t caught up with the washing up all week – last Sunday’s dessert dishes are still stacked on the side.  I haven’t done the laundry all week … again, the last of last Sundays loads has this morning received its third rewash and finally made it onto the airer.

I've tried to wash up, but after two attempts, it’s 13.30 and I still haven’t done more than breakfast bowls and drinking glasses.  So, I did something I’ve been determined not to do … I got the kids to pull the party supplies crate out ( a leftover from when I could give them class-sized birthday parties, now kept in a cupboard that I can’t access) and fed them lunch off paper plates.  I’ll more than likely feed them tea off of them too, and there are disposable cups and cutlery on the dining table ready for that.  Disposable is becoming a more and more attractive concept, though the eco/recycle-everything part of my psyche is screaming about it.

I’ve thrown away more food in the last month than I care to think of – unopened packs of meat, full bags of spuds, bread that’s gone green just for the sake of stuffing it in the freezer.  After a brief happy period where I was feeding the kids real food, meals are again becoming pre-prepared, over processed, ready meals.

I already have the local taxi firm on contract for school runs and after school activities, and on speed dial for everything else, I pay for a cleaner once a week, and have a gardener as and when needed, I have hot meals delivered on average twice a week, and probably would have more if money were no issue … what more can I do?

(and that’s not a whine, it’s an honest question – I’m at a loss)

Health Diary ...

I keep a health diary – normally a set of bullet points describing me that day.  I’ve kept it for over a year, and so don’t fill it in every day now because it gets a bit repetitive, but the other day (22^nd) I felt the need to.  This is it, no editing, spellchecking, or anything.

“went back to bed after the kids went to school, and only just got up (13.30).  Stillwobbly, slow, ears bunged, head horrible and aches and pains bad  to the point I've now taken all doses of pain meds since last night.  I actually used the stick around the house from about 2pm yeaterday, something i've never had to do before and the furniture/walls are normally enough.  I also couldn't prepare food, wash up or anything else.  Still nto sure if I can tongiht either.”

I stopped there, as I realised it was almost a blog in its own right, so I started typing on a word doc instead, where I could edit and spellcheck and the such – believe me when I say, despite once having been an exceptionally proficient touch typist, my accuracy wouldn’t get me an office junior job these days, my docs always look very colourful in their original form.  Anyway, this is the result …

All the above stems from that fibro fog induced extra walking and stress the other day.  Neither my body nor my mind liked it in the slightest, and weren’t too impressed when they were expected to walk out the door yesterday morning either.   

I was wobbly from the get go.  On that trip to the docs and bus journey back, I had several near misses on the fall front, only catching myself with walls, lampposts or my stick.  Its days like this I seriously consider a Zimmer frame, or wish for a scooter.

But by lunchtime yesterday, I also couldn’t concentrate.  More fog.  My headaches are of the pressure kind, where it feels like your skull is in a vice that’s being slowly tightened.  My ears always have a pressurised cotton wool feeling to them at that point, and so my balance, which is already wobbly, goes absolutely to pot. 

By 2pm, I was using the stick even just to cross the living room.  Preparing food was most definitely not happening - even if I could have physically stood there, or concentrated long enough to work out what I was doing, I wouldn’t have been safe.  I’ve burnt myself in the past when I’ve tried whilst feeling not as bad as this. 

But even ordering the food online was a task once the kids came home.  Concentrating on more than one meal, making sure all were right before I hit ‘pay’, almost had me on a shut down.  Thank goodness for online ordering, there’s no way I could handle phone ordering.

My statement in my diary about the pain meds is an important one too.  I have a very high pain tolerance.  I’ve never been one for taking meds unnecessarily.  So when I say I’ve taken more than one dose in, for example, a two day stretch, then it’s bad … it’s very bad … it’s tears streaming, curl up and whimper bad. 

Now, when I said it all stemmed from the other day, I wasn’t quite honest.  It was yesterday evening that I also realised my frame of mind wasn’t right again.  You see, I’d actually managed to come off my antidepressants a while back.  It hadn’t been intentional, all the stress of my ex leaving and then my mum dying had literally meant I forgot, or couldn’t be bothered with, a lot of things, including non-pain meds, for a while.  But when I came out of that, I realised that actually, I didn’t feel that bad without the antidepressants.  I’ll be honest, I’d been wondering for a while if they were doing anything, had even mentioned it to the doc before everything happened, though at that point we’d decided to give it a little longer just in case.

But these last few days, I’d found myself easily teary.  It’s often a sign for me that things are off, when I well up at the smallest, stupidest, things.  I also wasn’t responding to things quite ‘right’.  It’s hard to describe, but I just knew I was slipping away from me.  My sleep has also been broken for a week or two now, never getting more than about 4 hours in one go, but feeling unable to actually go to bed at night.

So, my ‘not that bad’ appears to have been another of those mood ebbs and flows I’ve always suffered from, timed just right to let me convince myself I was ok again, when I wasn’t.  It looks like I’m going back on the pills again. 

So right now, I’ve got a double whammy happening to me, body and mind, and all this frustrates me. 

Yesterday, there was meat in the fridge that needed using.  This evening, I was supposed to be baking with the kids for their school fair tomorrow.  At the weekend, both seemed perfectly doable, in fact, I was even considering a new recipe for the meat and more than one baking session.  But now we’re here, between mind-set and the fact that I haven’t been able to wash up at all for two days, neither did/will happen.  Oh, I’ll still try the baking, I enjoy doing it, and it’s only packet mixes these days, but past experience says by the time I’ve washed up and fed them, that will be the limit of my abilities.

I also realised that alongside the grippy tap heads, second handrail on the stairs and grab rails in the shower I’ve already realised I need, I’m also going to need grab rails at the back door too, just to get up the low step and over the door frame.  And the other day, we took the washing line down – I can’t stand with my arms up like that to hang things, haven’t been able to for a few years now, but was stubbornly hoping that ability would come back.  It’s not, so it’s tumble dryer and indoor airer all year here.

And I know this isn’t a good finish, more a hang in the air, but my mind has gone again. 

Now read my Big Changes blog

Which Title To Claim?

My husband left me a few months ago, and won’t be coming back.

So now I’m at a point where I need to renew or obtain some documents (driving license for example), and I get the ‘title’ question.

Although the legal response is Mrs, I’m not a Mrs any more, and don’t particularly want to be identified as such.

But I’m also no longer a Miss, haven’t been for a long long time.

Men can be a Mr all their lives, no-one has to know whether that means single, married or whatever, and the form Ms is the closest a woman can get to the same.

But Ms has never appealed to me (no offence to any Ms’s reading this).  I’ve researched the origins (this is a good explanation for anyone interested), I see the point, and yes, it fits the need I have, but I just don’t like it.

So, I’ve come to the conclusion that I’d rather be title free … but I’m not allowed to be.

Why not?

The Curse of Tech

I’ll be the first to admit, ours is a very tech-heavy house.  I use the pc every day, it’s my lifeline to the outside world, for friends, for shopping (from boring groceries to the more fun stuff), it gives me news, views, and discussions to feed my mind, it inspires, it allows me to express myself, here and in other places and forms.  In short, I’d be lost without it.

My Kindle allows me to carry on with my beloved reading now that I can no longer hold physical books for any length of time.

And my cheap little tablet (a Tesco Hudl if you’re wondering) puts all that into a small package for if I’m away from home for a long time, or can't sit at the PC.

My kids are also techy, in a gaming way.  Between them, they have over the years amassed an impressive array of consoles, from the ancient to the (almost) modern, plus an old laptop that just about handles Steam powered games.  The middle one even wants to go into game design as he gets older, and already has some fascinating ideas.

But all that aside, I will also be the first to admit that tech can be damaging.  Without limits, it can take over lives, suck the user in never to be seen again, so to speak.

There are studies coming out that indicate speech and developmental delays in the very young who use tech a lot.  Of course, the whole ‘end of civilised conversation’ argument was also made when TV started, and when the number of channels suddenly leapt with the advent of satellite and cable.  It was even a fear when novels first became popular way back in the 1700s.  But this time, there is a subtle difference.  It is not always the tech user who is the one to be affected.

I saw this in action just this morning.  I was waiting for the bus after a medical appointment (whether I should be using the bus today is another argument, one where the answer is a resounding no, but needs must).  Anyway, as I’m standing at the bus stop, a lady joins me with a little boy, I’d say around 18-24 months old, in a pushchair.  She parks him up, stands behind him so he can’t see her, pulls out her phone, starts tapping away, and for the next ten minutes, barely interacts with him.

The little guy was calling ‘mummy’ in that excited 2 year old way, he was pointing out the ‘bue car’, the ‘big buz’, the ‘twee’, he was just trying to get her attention, but nothing.

Now, all parents and early years educators know, the way a child learns at that age is by copying.  When they tell you about the ‘bue car’, you don’t ignore, you respond with a cheerful and affirming ‘yes, a blue car’.  You engage.  You respond.  You have a conversation, however stunted.

Because otherwise, in a few years time, you’ll have a child who thinks he doesn’t have to reply when his name is called, because ‘mummy’ never has.  Who is having communication problems.  Who doesn’t quite ‘get’ how to be in a social setting.

And it’s not the tech user (mum) who will be suffering the most, it’ll be the child … and his teachers, and his peers, will be picking up the pieces.

So, for whatever being you believe in’s sake, put the darned phone down, step away from the screen.  You have one of the most amazing creatures in existence with you, and you’d rather be playing games or discussing trivialities with someone on the other end of a web connection.  There is a time and place for that, I’m not saying never, but it’s doubtful anything is so important that you can’t put it away for ten minutes to stare at the leaves on the trees with little eyes who are still amazed by such things.

Frightening Fibro Fog

Fibro fog … any fatigue syndrome sufferer will understand it … that sudden loss of train of thought, the struggle for the right word or name, the inability to concentrate for even a second on the simplest of tasks.

For me, it usually manifests in one of two ways.  It’s either that struggle for words where you end up flapping your hands around at the person you’re speaking to in a ‘you know what I mean/oh what’s the word’ fashion.  Or it’s a sudden and complete shutdown of cognitive ability that makes you want to run away and cry.

I suffered the latter most recently last week, when I was taken somewhere I hadn’t expected to be that day, and asked to make a relatively simple decision.  What did I want for lunch?  I stared at the menu, and couldn’t even take in what I was looking at, let alone the different categories or meals, or meal ingredients.  It took me almost 15 minutes to be able to bring my head around, the ‘mood music’ and presence of other (actually very quiet) clientele making it more difficult.  A sensory overload if you will. 

If I’d been alone, this would have been one of those moments where I just walked out.  I’ve done it in supermarkets before – everything’s just been too much to handle, and I’ve left the trolley in the middle of the aisle and gone home with nothing (my apologies to which poor employee has to tidy such trollies away ... it's not an intentional action to leave it).  

If I’m at home, this is one of the points where I go and shut myself in the bathroom, or go to bed and bury my head under my duvet, away from any and all sound and distraction.  It was only because my companion at the time understood, and was able to give me the time I needed, that I actually ended up eating.

I thought that scenario was bad enough, scary enough … then this morning hit.  A whole new aspect of Fibro fog I’ve never experienced before.

Whilst I can lose a sentence mid-way through, forget the simplest of words etc., struggle to follow a route or set of directions, my memory to date for other things hasn’t been too affected.

Until today.

I’d had to go to the next town to collect a prescription for one of my kids.  Issued by the hospital, it couldn’t go to my regular pharmacy in the village, but had to go to the nearest in a large chain.  I’d got a taxi there, I always do for journeys like that.  The combination of waiting for and traveling by bus is often enough to shut me down physically or mentally, so I avoid doing so, especially when I don’t know the destination too well, and/or know I can’t use the taxi for the return for whatever reason.

Once I’d got the script, I took a look in the charity shop next door.  It’s for the hospice who looked after my mother in her last days earlier this year, and I like to support them when I can … and seeing as this is the first time in almost a year I’ve been near one of their shops, it was almost impossible for me not to take the opportunity while I could.

So, I amass a little pile of things … thank you to whoever with my taste in music decided to donate what looked like half their collection recently – it’ll be playing on my PC as soon as I finish typing … that darned fibro fog again means I can’t type and listen at the same time today. 

But back to the point.  I had no cash on me.  Cashpoints are few and far between in my world, so my plan had been to get enough funds for the whole week out of the ATM before getting the bus home, as the stop is right next to one.  I didn’t even have my bus fare at this point.

So, out comes the debit card to pay for my new music etc., and I punch in the PIN.  Declined – incorrect PIN.  I assume I miss-hit a key, so punch it in again.  Declined again.  At this point, I know I have only one more attempt, and my Fibro fog is making me second guess myself, so I punch in a slightly different number, thinking I’m getting confused with an old PIN.  Declined again.

Have you ever had the embarrassment of having to hand shopping back at the till, whether it be lack of funds, faulty card or any other reason?  It’s horrible isn’t it?

So, after apologising profusely and barely biting back a panic attack, I make the trek to the cashpoint.  Bear in mind, this was supposed to be my last part of my journey, so I’m already walking further than I’d planned, and I’m starting to feel wobbly and woozy, partly from my health, and partly from the emotional stress the whole PIN debacle was causing.

I get to the cashpoint, and stand there for a few minutes trying to get the courage to try again.  Remember, I’m miles from home, and without any cash, so if this doesn’t work, I am literally stranded.

On the walk to the ATM, I’ve convinced myself I must have the wrong PIN, so try another combination.  Declined.  I try another.  Declined.  Oh Sh**.  One last chance, or my card won’t just be declined, but swallowed in a fraud/theft prevention thingy.  If that happens, I can't pay for my taxis this week, my kids will miss their after school activities and the school summer fair, I won't be able to pay the chap who helps with the garden, or the lady who helps with the house.  So many things relied on me having cash today.

One. Last. Chance.  

I’ll be honest, I don’t even know what number I punched in, my mind was so addled by that point.  I was obviously on automatic … which was apparently a good thing.

Because it worked!

I had cash!

I was saved!

I almost cried there in the street,

So, what happened back in the shop?  I have no idea. 

I’ve had the PIN for over 6 months, and never had a problem before.  It’s just one of the horrors I, and so many others, have to live with each day.  Looks like I might have to break that cardinal rule of PINs and write it down somewhere … when I’m sure what it is.

Just ... domestic violence

From www.womensaid.org.uk

What are the signs of domestic violence?

• Destructive criticism and verbal abuse: shouting/mocking/accusing/name calling/verbally threatening
• Pressure tactics: sulking, threatening to withhold money, disconnect the telephone, take the car away, commit suicide, take the children away, report you to welfare agencies unless you comply with his demands regarding bringing up the children, lying to your friends and family about you, telling you that you have no choice in any decisions.
• Disrespect: persistently putting you down in front of other people, not listening or responding when you talk, interrupting your telephone calls, taking money from your purse without asking, refusing to help with childcare or housework.
• Breaking trust: lying to you, withholding information from you, being jealous, having other relationships, breaking promises and shared agreements.
• Isolation: monitoring or blocking your telephone calls, telling you where you can and cannot go, preventing you from seeing friends and relatives.
• Harassment: following you, checking up on you, opening your mail, repeatedly checking to see who has telephoned you, embarrassing you in public.
• Threats: making angry gestures, using physical size to intimidate, shouting you down, destroying your possessions, breaking things, punching walls, wielding a knife or a gun, threatening to kill or harm you and the children.
• Sexual violence: using force, threats or intimidation to make you perform sexual acts, having sex with you when you don't want to have sex, any degrading treatment based on your sexual orientation.
• Physical violence: punching, slapping, hitting, biting, pinching, kicking, pulling hair out, pushing, shoving, burning, strangling.
• Denial: saying the abuse doesn't happen, saying you caused the abusive behaviour, being publicly gentle and patient, crying and begging for forgiveness, saying it will never happen again.

The Art of Grieving?

My mum passed away in February after a short, vicious, and unexpected battle with stage 4 breast cancer that was found too late.

She had her 65^th birthday in the hospice, and passed away just one week later.

I didn’t cry.  Not at first.  I couldn’t, and I felt so guilty for that.  But my husband, father of my kids, had walked out on us just two days earlier, and I was doing all I could to keep the kids afloat.  I didn’t have time for me.

I cried at the funeral.  But not before.  And not since.

What I have done is remember.  And miss.  And mourn the loss.

I miss her when I spot a mother’s day or birthday card I know she would have liked.  I miss her when I go somewhere I’d wanted to take her, but we’d never quite managed to get to.  I miss her when I get a new top or pair of shoes, because she was the only person I could often show off my rare purchases to.  I miss her because she was the one I would phone if I needed a recipe, or some constructive criticism on an idea I had.  Or just needed someone to whine to.  I miss talking about new music with her (she often had the CDs before me, even when I was in my teens).

Ok, so I lied, I do (am) still cry(ing) – but not full blown snot and coughing … just a leaky eye and a sniffle that means a fast exit from the room until I’ve composed myself if the kids are around.

Where was I?  Yes … the little things is what I’m getting at. 

I miss her, because in the 18 months or so before her death, we also lost both of my grandparents, her father and mother, to Alzheimers and the effects of caring for said Alzheimers respectively, so I’ve gone from having a reasonably large and established support network, to a very small one. 

I grieve, not just for me, but for what she missed (she was bedridden at the time her own mother died – she hadn’t seen her for many months – the longest time at any point in her life), and will miss … her grandchildren growing up, my sister getting married, the time and experiences she and my father were supposed to have now that he’s finally been able to retire (just in time to nurse his wife through her last months).

I mourn for what my children and my niece and nephew have lost … a strong, loving grandmother, who adored them all, and was such a gentle guiding light to them.

I … I know this is still early days in many respects, but I still catch myself going to pick up the phone to her, or buying something for her.  Just today, I saw a gift bag on a display and thought ‘that would be perfect for mum’s birthd…oh’.  In fact, it was the trigger for this blog.

People will say ‘it gets easier’, but if I’m honest, I’m not sure if I want those moments to end or not.

The Spoon Theory ... or The Death Star Effect (Fibromyalgia Awareness Day)

I have Christine Miserandino's Spoon Theory linked in the side bar there *points*, but today seemed a good day to highlight it.  Not just because it's Fibromyalgia Awareness Day, but also because today, I ran out of my own spoons before I'd started.

The Spoon Theory is a deceivingly simple way for those of us with fluctuating, or severe, or fatigue, or pain-ridden conditions to explain how we have to plan every move with precision.  How we can do one small thing, but not another, and neither on short notice.  And how there is no respite.  No warning.  No second chances.  We power down as quickly as Obi Wan shuts down the Death Star's tractor grid.


This morning, my plan was to see the kids out the door on their way to school, and then to crawl back to bed until they got home again.  They've all been ill at various points this past week, and I've used all my spoons for the next few days already, and then some.  The lack of chances to rest has severely drained me, to the point where I couldn't feed them more than a sandwich yesterday, I already know I can't cook today either, and the laundry hasn't been done for a week (among other things).

But, as with all the best laid plans of mice and men, what actually happened was rather different.

My eldest had a bit of a crisis at the last minute, and ended up staying home, and my middle one got a little panicked because of that.  He doesn't handle change, or others struggling emotions, well, and so does tend to need a bit more help himself at those times.

So, after seeing them through the shower, I ended up having to get dressed myself, and go out with the younger two in their taxi to school (with hair that's not been washed for over a fortnight), saw middle one into his class, via a desperately important (to him, and hence panic-inducing) inquiry at the school office, then had to find my own way back home.

Now, for most people, the journey between school and where I live is nothing ... it's barely over a mile, so walking distance, there's a bi-hourly bus, and it takes less than 5 minutes in the car.

For me, it's an hour on a good day.  Today was not a good day.  By the time I hobble to the bus stop, which according to Google should take 8 minutes, but takes me nearer 30, I've missed one bus, so have to wait for the next.  There's no seat or shelter at this stop, nothing even to lean on, a cold wind blowing across the open land opposite it, I'm struggling to stand and I'm getting pains through my right arm and hand from the stick already.  The bus comes, I get on and travel my two stops, and get off again.

Google says this next stage should take 3 minutes to walk.  On a good day, I can do it in 15.  I have known it take over 40 minutes.  Today it took me around half an hour.  Half an hour where the pains brought tears to my eyes.  Where my left leg literally gave out on me more than once, and I ended up dragging it as a dead weight for part of the journey.  Where crossing the road was (always is) one of the scariest things I attempt.  Where for most of the journey, my feet didn't actually break contact with the ground.  Where I wasn't sure if the next step (lurch) would be my last and I'd end up crumpled on the floor.

So much for the meeting the "repeatedly, reliably, safely and in a timely manner" test that is supposed to apply to the disability assessments ... guess this is why I got the higher rate, though I'm always in fear on these rare journeys out, that someone will report me for being able to walk more than 20 metres and I'll lose all my help, but that's another blog.

Anyway, when I do finally get home, I can't go to bed as my body is screaming at me to do, because I still have a child off school, but as far as most able bodied people's views on the world go, I've done nothing with my day yet.  And they're right.  In fact, right now is the first time I've made it off the sofa since then, and then only because #2 and #3 are home from school, and I refuse to not greet them as they come in.

This is what happens when spoons run out.  Life stops.


But before reading Christine's theory, I didn't know how to explain all that ... how to make it clear that I'm not just lazy, or fat (that's a chicken and egg question - which came first, the weight or the illness ... and you just know which answer most observers pick).  That I really can't go out at the drop of a hat.  That I may well cancel plans with even less notice than that.

Reading the Spoons Theory was like turning on a light.  Finally, there was a way to try and demonstrate.  If nothing else, I could at least direct people to her page.

Reblog ... Fibromyalgia Awareness Day

Despite suffering from it, I'm still relatively unaware of Fibro myself, in many respects, so I didn't even know today was 'our day' ... this is the blog that's alerted me, via about three other blogs reblogging, so hopefully I can keep the domino topple flowing by reblogging again.

And for anyone who doesn't understand about spoons ... well, that'll be my next blog.

http://ramblingsofafibrofoggedmind.wordpress.com/2014/05/12/fibromyalgia-awareness-day/

Wii Fit ... from my weight loss blog

http://itsjustmegettingsmaller.blogspot.co.uk/2014/05/wii-fit-or-wii-ll-i-keep-up.html

Reblog ... Our Own False Crown - a piece of poetry

I just like it, nothing more ...

http://julijuxtaposed.wordpress.com/2014/05/10/our-own-false-crown/

Reblog ... Ernest Bevin's Disabled Employment Reforms

So now, after the hard work and many years spent by people like Bevin in reforming Employment laws, Housing, Healthcare and so many other social factors, we're stepping backwards ...

http://beastrabban.wordpress.com/2014/05/10/ernest-bevins-reforms-for-the-disabled/?blogsub=confirming#subscribe-blog

Reblog ... London Foodbanks and the DWP

So, the Job Centre say 'take the job we tell you to, or we'll strip your benefits' ... so he does, finds it was only for 2 days work, not the longer contract he'd been led to believe, ends up having to try and restart his claim for unemployment, but the system is so bogged down, he actually ends up having to refuse work over the following months because they've not left him any money to eat with, let alone pay travel or clothing costs for a job ... and conveniently 'forget' to tell him that there's a hardship fund exactly for this situation ... yet another counter-productive 'austerity' measure.

http://annmcgauran.org.uk/2014/05/09/london-foodbank-life-surreal-at-times-but-dangerous-too/

Just ... A Different Blog

My weight loss(hopefully) tracker blog ... feel free to drop by

http://itsjustmegettingsmaller.blogspot.co.uk/

The difference between alone and lonely

I’ve felt lonely for years now … despite having plenty of supportive friends online, I’ve been cut off from regular, physical, contact with all bar one adult face, and that one not particularly receptive to interactions or emotions.

But now I’m alone … that face having found somewhere he’s happier … and yet I find myself, whilst still for all intents and purposes cut off from the ‘real’ world, no longer lonely.

Strange how the human mind works.  Feeling alone in a crowded room … or surrounded by friends in an empty one?  Having had them both, I know which I’d rather be.

The Need To Be Social

Why?  Why is it the perceived norm that everyone should ‘join in’ with everything and have crowds of friends?

Why can’t the loners be … well, loners?

There was a time when it was accepted that not everyone was wired to be in a crowd.  That some people worked better on their own.  In fact, when you look back, many inventions and discoveries, much art and music, came from such people.  People who were allowed to be who they were.

I have three children who are all, in some degree, loners.  They’re naturally the ones who gravitate to the quieter areas of life.  They’re the ones who would rather have their nose buried in a book, or be taking apart and rebuilding some gadget or other.  But they’re not allowed to ‘be’.  Every suggestion and implication from the adults in their world, from society, is that they’re not doing it right.  That they need to join a club, join a team, constantly be surrounded by friends.  That the fact they are sometimes picked on for who they are is somehow their fault for not being someone else

But what if they don’t want to change.  What if they CAN’T change?  What if they’re not sporty or musical (because that’s all that’s on offer)?  What if the very people who cause them problems are the ones in those groups?

Why should the loners be the ones to have to change their whole self to fit in?

Why can’t they be allowed to not fit?  To not conform?  To find their own place in the world?

Or, if it’s so important to them, why can’t the others change instead?

Just a thought.

Look Down ... My First Reblog

Wordpress doesn't like me ... no matter how many times I reset my password, it never ever lets me in ... so I can rarely 'like' Purple Persuasion's blogs, even though they're probably one of my most read.  So, when this dropped into my inbox a short while ago, and I watched the video she's done so well to make, well, it seemed like a good message to pass on ... especially as she's very close to echoing my own thoughts about online relationships.

The blog ...
http://purplepersuasion.wordpress.com/2014/05/06/look-down-the-benefits-of-online-friendships/


... and the video ...
https://www.youtube.com/watch?v=NOXyguJH-pg

Tribute to my biggest ‘little man’

It’s strange the thoughts that come to you when you’re washing up, or just about to fall asleep.  This is one of them.

Tribute to my biggest ‘little man’.

He turned 13 last week … that milestone of life that marks the beginning of the end of childhood.

And I got to thinking.  It doesn’t seem like 13 years.  It barely feels like five minutes.  But so much has happened to and around him.

It was an easy, if nauseous, pregnancy that ended with a long and difficult labour.  So much so, that after trying to blast him out with ‘liquid dynamite’, they decided that a sunroof may be required.  Eventually they ended up pulling him out by his ears, and his very first baby photo, taken in the hospital, has him looking rather like an angry beetroot.

When we brought him home a few days later, I still remember that feeling of awe and fear as we sat staring at him in his Moses basket in the living room.  ‘What now?’

Then several weeks of silly grins and ‘look what we did!’

Then life changed.  His dad became disabled in a way that would affect us all far more than we realised.

My eldest son has never known his father able bodied.  He’s never had that joy of being able to run around the park with him.  Even the basics of childhood – walks in the woods, yomps over the dunes, kickabouts in the garden, all those things that were planned and dreamed of in the nine months he was forming in me, have been curtailed.

He was a precocious child ... rolling, sitting, walking all well before the average (and that’s not proud mummy exaggeration – I have the film to prove it).  By 4 years old he was exploring and understanding processes like the precipitation cycle, how a combustion engine works etc.  He could hold a proper conversation with an adult.

But he also ended up growing before his time in many other, not so fortunate, ways … unintentionally becoming a carer himself … for his dad, and later on, and to my eternal regret, in part for his brothers.

He also had his education interrupted.  He missed pre-school entirely, and ended up in three different schools before he was 11.  All because of having to move to follow accommodation that worked for his dad. 

So whilst he is immensely intelligent in practical and ‘thinking’ ways, whilst his knowledge and maturity often surpasses his peers, his ability to put that knowledge into the accepted forms, his basics, his ‘three Rs’, are sadly behind.  Despite this though, he keeps trying, keeps putting in the effort, and whilst he will never be an academic ‘A’ student, he is on track to pass all subjects.

His father and I also unwittingly gave him the dodgy genes that resulted in hypermobility syndrome, dyspraxia, and other issues, so along with sports, that apparent social ‘fix all’ to so many, being difficult, he’s already had more than his fair share of bumps, bruises, sprains and growing pains.

And yet, through all this, he’s never truly complained.  In fact, he’s often had to be stopped from taking more on.

Yes, he has struggled at times … most often because unfortunately he takes after me in that he doesn’t make friends easily so, with his other issues, has been a target for bullying … but thankfully he’s never bent to peer pressure.  He knows WHO he is, and won’t let that go.  And now we won’t have to move again, and his dad’s issues are no longer a decisive factor in our daily lives, he’s starting to make bonds with like-minded kids that I hope will support him and see him through many years. 

And he is GOOD.  One of the recurring themes of any parent teacher meeting, or encounter with a Scout leader or some other adult he’s dealt with, is that he is polite, helpful, willing to try, even if he doesn’t always succeed.  I’ve lost count of the number of times I’ve been told they wish they had more of him in their class/group.

So, as I look at him now, in his army combats, plugged into a computer game, with his unwashed neck and smelly feet, the beginnings of fuzz on his chin, and an attitude that would rival the most hormonal teen male, I feel PRIDE. 

Because while that may be how he looks and acts, it’s not all he is … in fact it’s very little of what he is … and if all goes well, he will be far more than a collection of labels and assumptions and grades when he grows to maturity.

But even if he’s not … he’s still my son ... my 'little man'.

Life ... Interrupted

Today started not too badly … it’s the day to scatter mum’s ashes, so I’m maybe a bit off kilter, but it’s also the day I’m supposed to be going to try out an electric powered tricycle … my version of a mobility scooter … that will give me the ability to get out of the house without having to rely on limited and circuitous bus routes (or, more often, expensive taxis), which will let me take the kids to the park, do some of the grocery shopping, maybe join an adult ed class at the local community centre, possibly even eventually access a small part time job.

Then the kids woke up … all three running blazing temperatures and looking decidedly ill.

I called Dad to say I couldn’t make it today, and could hear the hurt in his voice.  And the bike test ride is off too of course.

But this is my life.

It’s why it’s taken me more than the entire lifetime of my youngest child to get a much needed eye test and new lenses (and far more than the lifetime of my oldest child to get new frames).

It’s why, even though I do, on second or third try, generally make it to my annual dental check-ups, I’ve yet to get back for the urgent treatment I’m always told is needed (I’m amazed the dentist is even willing to keep me on his books still, the number of wasted x-rays and moulds he’s taken over the years).  I can now literally feel my teeth disintegrating in my mouth (the joy of poor genetics when it comes to bones and teeth, or so one dentist once told me).

It’s why it’s literally taken me decades to get my health looked at seriously and a diagnosis made.

It's why I missed both my grandparents funerals in the past 18 months, and only just made it to my mum's.

It’s why I’m just about to cancel, for the third time in a month, my ‘starting life over’ hairdressers appointment … not having made it to the salon more than twice in the last 6 years, and then only for quick dry trims.

And don’t talk to me about the pedicure I’ve been trying to get.  And it's not a luxury - my health means I very often can't bend to sort my own feet and nails out.  Sandals are not an option right now.  

And much as I’d love to, I honestly can’t see how I could take on a job, when I can’t even guarantee attending a one hour appointment with weeks worth of notice.

If it’s not my health, it’s the kids’ health.  If it’s not health, it’s finances.  If it’s not finances, it’s outside influence.  And it’s grinding me down.

Fibromyalgia ... the long journey to diagnosis

Being recently diagnosed with Fibromyalgia/CFS, I’ve spent this morning (2nd May 2014) looking through various Fibro blogs and sites, in an attempt to try and find the words to explain, well ... me.

Some things I’ve read and thought ‘yes, that’s it exactly’, others I’m not so sure about.  The big message that’s come from them all though is that Fibro is one of those conditions that hits every sufferer differently.  Maybe that’s a big part of why it can be so hard to get it diagnosed, or believed.

So, in an attempt to maybe help someone else on their journey, I'll add my small voice, my history, to the clamour of information and opinions out there.

...

I’ll be honest, because of my long history of General Practitioners (GPs) not taking my health issues seriously,  I hadn’t wanted to start looking like one of the internet self-diagnosers, so even though it had been raised as a possibility, I didn’t, until after my diagnosis, look into the details of Fibro.

Now that I've read the symptoms lists on more than one site (cause each is slightly different), I realise that I’ve actually had FMS/CFS, or symptoms thereof, in some form since I was about 14.  I’m now 39 by the way.

In my teens, my lethargy, weakness, dizzy spells and muscle/joint pain were put down to growing pains, exam stress, puberty, weight. 

In my early 20s, when I was missing so much work my employers actually asked me if I truly wanted a job, and my direct supervisor said she didn’t believe I was ill (and promptly took 6 months off with stress, which she’d also said didn’t exist) I was given the same excuses.  At this point I did at least get referred to a balance clinic, for what was at that point the most minor of my issues … they agreed my balance was shot, but that was as far as it went – no joined up diagnosing there.

In my late 20s and early 30s, it was pregnancy, post pregnancy, stress of having kids, stress of being a carer … ‘what do you expect – you’re overweight/reaching middle age/have had 1/2/3 10+lb babies – your body will ache now and then’

At this point, I pretty much gave up with the medical community.  It hadn’t really been a sustained attempt to be heard in the first place, just a cry for help when I was in a bad place, that was rarely if ever heard.  So often, when I was at my most ill, I was unable to get to the doctor, so they often saw me at my best instead, as is so often the case for those of us with fluctuating conditions, and so they assumed I wasn’t ‘that bad’.

Then, just under 3 years ago now, after over 20 years (the latter ten of which I was also sole carer for another disabled adult) of having periodic flares ups that wiped me out, interspersed with longer periods of being able to maintain a reasonable quality of life and levels of activity, my body finally gave up. 

Would you believe, it was an attempt to get fit, by joining a gym under a doctors referral, that finally did for me.  In less than 2 months of weekly gym sessions (and I couldn’t physically do more than an hour a week), I was housebound, in constant pain, unable to do even the basics needed to look after myself, let alone my kids.

After a few months, once I realised this time it wasn’t going away, I went back to the doctors, and saw one I hadn’t met before.  She was sympathetic, seemed to understand/believe my problems, even suggested several possibilities to check for, including, CFS/Fibro.  In the very next breath though, she stated cheerfully that she’d NEVER diagnosed anyone with either condition, because they were so vague and unprovable (clearly implying that she didn’t believe in them).  Seeing as I was more concerned about it possibly being MS (as my symptoms were very closely mirroring those my mother suffered just before she got that diagnosis some 20 years earlier), and not knowing much about FMS/CFS, I didn’t think much of that comment at the time.

Over the following year she ran blood test after blood test, each taking between 2 and 4 weeks before I could see her to get the results and move on.  They all came back clear except for a mild vitamin D deficiency.  So, she diagnosed me with depression and told me to buy some vitamins and get some sun.  She did book me in for a block of CBT, but I missed so much because of my health, I was kicked off the list.  Such are the joys of the NHS ... good as it is in many cases, in others it just doesn't work.

I gave up again.  The emotional stress and physical pain of getting to the surgery, only to come away no further on than before, was just too much.

Then, another 6 months down the line, I had to see her for a routine check-up.  By this point, I was walking with a stick, and extremely slowly at that.  Little old ladies with zimmer frames were whizzing past me as if I were stood still.  I envied them.

It took me so long to walk the 10 or so yards from the waiting room to her surgery that she came out into the corridor to find me.  I think this was when she finally realised it wasn’t all just a few aches and a ‘low mood’ (she’d stopped calling it depression early on).  She insisted on running all the tests again, ‘in case something’s changed’, but when they all came back the same, I finally got a referral, and some pain relief.

It was a rheumatologist she referred me to, despite her apparent non-belief in chronic fatigue ailments, and my bloods showing no rheumatic issues.  This surprised me, but it did me a favour too.  The consultant, purely on reading her referral notes and spending a few minutes talking to me, instantly said Fibro/CFS. 

To be honest, I didn’t care what my diagnosis was.  I didn’t even care that it’s not curable.  This was the first time in almost a quarter of a century that I’d felt any medical professional was truly taking me seriously, rather than just paying lip service.  That they were looking at me as a whole, rather than just the simplest symptom.  I was just grateful to finally be believed … and to finally have a name to give all those people who ask ‘what’s wrong?’

Oh, and if we take this as a definitive list, which I doubt it is, there are only about 20 out of the (currently) 251 symptoms that I haven’t suffered with.

http://www.inspiredlivingwithfibromyalgia.com/2013/04/200-symptoms-of-fibromyalgia.html

Where to start?

I scribble ... I've been a scribbler for years now.  Sometimes it's fiction, sometimes it's fact.  Sometimes it's emotional, sometimes it's not.

I have an outlet for the fiction ... I have friends who read it, tell me if it's rubbish or not.  Those same (wonderful and much put upon) friends are always there for me to help me through the daily issues of life, but I don't tend to inflict my 'facts' writing on them so much.

Hence me finally, after a period of writing more fact than fiction, opening up a blog.  So, the first few posts may be a bit disjointed as I get all the things I want to get out there.

Often they've been inspired or prompted by reading something in another blog that's made me think ... which is good ... that's part of what, in my mind, all these blogs out in the world are supposed to do ... make others think for themselves.

Maybe one day I'll be able to make someone else think ... or to feel that they're not alone ... that their life at that point is not all there is ... that 'this', whatever it is for them, is normal, or at least not unusual, for someone else too.

Because that's what I get from reading everyone else's blogs ... a sense of community, of support, of learning and discovery.

As C S Lewis wrote -

“Friendship is born at that moment when one man says to another: "What! You too? I thought that no one but myself . . ."”