I've not had blogging in me for a long time, as the date of my last offering will attest. But something is telling me to start again - we shall see if it continues.
There are things I want to say, but don't know if I should, there are other things I should say but don't know how.
Suffice to say, we (my sons and I) have lived under that ancient curse of 'interesting times' this past 2 years, but the light is getting very bright at the end of that tunnel.
At the same time, I can hear the train getting closer and I can't get off the line.
I know it's all very unclear, but hopefully I'll be able to verbalise and elaborate in the coming weeks.
For now, consider this a place holder ...
Just ... Me
My blog … my place to say things.
Friday, 1 February 2019
Tuesday, 27 September 2016
“I wish you had a job” says my 10 year old son this morning.
“I wish you had a job” says my 10 year old son this
morning.
Now, his reason for wanting me to have a job is a little
different to mine … his reason is that he’d then have to go to our neighbour,
who he really likes and is a childminder, while I was at work.
My reply was that I wished I did too. In fact, it’s something that I find myself
thinking about with regularity. How nice
it would be to not be at the mercy of the DWP.
How good it would feel to be productive again. I even often find myself looking through the
job sites.
But then I come down out of cloud cuckoo land and reality
strikes.
I honestly can’t see how I could do a job.
My mind doesn’t function the way it once did, so all my
high-pressured admin and office experience, my ability to work independently, is a non-starter.
And my body can barely make it to the doctors, chemist and
back, with taxi both ways and several sit down rests along the way, let alone
do multiple back to back hours of even the lightest work.
Damn it, I’ve only managed to cook four ‘take it out the
box and stick it in the oven’ meals in the last 2.5 weeks, all cleaning and
laundry is backed up to a point it’ll take me a week of good health to clear
it, and I’ve slept more than I’ve been awake in longer than that. That’s the fallout from a (simple) wedding
and a (at home) birthday in quick succession. Or just a bad flare ... there isn't always a reason.
You tell me what employer out there will take on someone who
hasn’t been in the workplace for 15yrs, has varying degrees of mobility issues,
no energy, constant pain, anxiety and panic attacks when under even a mild
amount of pressure, and can’t guarantee, from one hour to the next, let alone
day or week, whether she’d even make it into work, let alone manage anything
once there.
I wish I had a job too …
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Thursday, 13 August 2015
Reblog ... Rebirth of Clarity ... Fibro and Family
The second part - from under the leaves picture - that - just that ...
https://rebirthofclarity.wordpress.com/2015/08/13/i-want-to-start-a-commune-for-people-with-fibromyalgia-as-we-are-the-only-ones-that-get-it/
https://rebirthofclarity.wordpress.com/2015/08/13/i-want-to-start-a-commune-for-people-with-fibromyalgia-as-we-are-the-only-ones-that-get-it/
Wednesday, 28 January 2015
Reblog and comment ... where next?
I just read this blog by Seeking Equilibrium (Questions but no answers yet) and yet again was struck by the similarities so many of us Fibro sufferers have in terms of our experiences with the medical community and diagnosis.
I too am at yet another of those 'umm' moments ... since my last health post here I've gained yet another unconfirmed diagnosis (PCOS - the ultrasound was clear, but bloods and other symptoms say I have it, hence not officially diagnosed), and have been referred to more than one hospital department regarding the Fibro/CFS. I've also had an MRI and EMG testing. And here comes the problem ... both those tests came back pretty much 'normal' too. In other words, at least on the preliminary inspection of the testers themselves, they didn't show up what it had been hoped/expected they would.
So I know that when I go back to see the Neurologist who sent me for the tests, he's going to do an 'umm' and pass the buck back to my GP just like the others have. My GP who's been with me the last 2 years of all this by the way has just left the practice, so it'll mean me having to break a new one in, quite possibly having to go through a years worth of bloods etc to satisfy them before getting any further.
And all the time, I'm feeling just as bad, if not worse.
All I want is a definitive answer, or at least one that won't get changed by the next person to see me. I don't even care if there's no cure at this stage.
I too am at yet another of those 'umm' moments ... since my last health post here I've gained yet another unconfirmed diagnosis (PCOS - the ultrasound was clear, but bloods and other symptoms say I have it, hence not officially diagnosed), and have been referred to more than one hospital department regarding the Fibro/CFS. I've also had an MRI and EMG testing. And here comes the problem ... both those tests came back pretty much 'normal' too. In other words, at least on the preliminary inspection of the testers themselves, they didn't show up what it had been hoped/expected they would.
So I know that when I go back to see the Neurologist who sent me for the tests, he's going to do an 'umm' and pass the buck back to my GP just like the others have. My GP who's been with me the last 2 years of all this by the way has just left the practice, so it'll mean me having to break a new one in, quite possibly having to go through a years worth of bloods etc to satisfy them before getting any further.
And all the time, I'm feeling just as bad, if not worse.
All I want is a definitive answer, or at least one that won't get changed by the next person to see me. I don't even care if there's no cure at this stage.
Friday, 3 October 2014
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...
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...
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Thursday, 14 August 2014
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?
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?
Tuesday, 12 August 2014
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/
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/
Monday, 11 August 2014
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...
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...
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Tuesday, 5 August 2014
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 ...
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 ...
Saturday, 12 July 2014
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.
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.
Monday, 7 July 2014
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
Saturday, 21 June 2014
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.
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.
Wednesday, 18 June 2014
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/
Monday, 16 June 2014
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.
Sunday, 15 June 2014
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...
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...
Thursday, 5 June 2014
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.
Tuesday, 27 May 2014
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?
Saturday, 24 May 2014
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 (22nd) 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
Labels:
awareness,
CFS,
children,
Chronic fatigue,
Disablility,
fear,
Fibro,
fibro fog,
fibromyalgia,
FMS,
Health
Friday, 23 May 2014
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?
Labels:
divorce,
female titles,
marital status,
miss,
mrs,
ms,
separation
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