Just a quick and out of focus doodle of Paul Dirac, if I find a way of drawing him better I'll send him on adventures with my fave steampunk astrogirl. Who is a secret atm! But I've got picks of her drawn up.
Friday, 10 September 2010
Paul Dirac doodle 2
Just a quick and out of focus doodle of Paul Dirac, if I find a way of drawing him better I'll send him on adventures with my fave steampunk astrogirl. Who is a secret atm! But I've got picks of her drawn up.
Thursday, 5 August 2010
Just a little resolve
It would be OK if everyday was normal,
Where independence was a natural occurrence,
Where people walk alone
& shop in the market
Without a need for another clinging to their pocket.
There are things so lost of healthy people
Like the freedom of choice & time
The freeness of dancing alone in a club,
To the freedom making words to rhyme
The reality:
Wanting to go & fix some caffeine
From a real coffee shop, from a real bean
Means waiting around until you can be wheeled,
To your destination in the urban field
For example, a trip to read books,
Can be lost on the non-dexterous
Or you need someone to look
Or some to carry & hold, such a fuss.
Off to the cinema
Where life is at best, a fix f' hypoglycaemia
Means a trip on the bus, did you get your right stop?
Did you fall when it wobbled?
Did you fit, did you flop?
Having someone around to help you to the show
Mean not getting lost or a sugar overdose
Means someone to hold you when you body ticks
Means someone to hold you when the bus kicks
(The time you have to bust a move
Becomes the time you have to bust your groove,
But don't let this get your down, Claire
You can sit & dance away in your chair.)
How to resolve:
They are times when you feel alone,
In the bad way when your pain has over grown.
But there are others going through the same
And enjoying your own company will keep you sane.
Instead of walks alone, the sweet silver song
Your carer, paid or otherwise, does not belong
In your thoughts, they are all yours to sing
Aloud and inside, & think your own thing.
You don't have to say a word
If you want the peace & quiet,
Mumble your needs to them
And no fuss or maddening riot.
Dreams of flying can be real
If you only stop and feel the breeze,
If you can't make it out that day
Open the window & breathe your cares away.
Maybe stop & dictate a poem
on your speech software & think, a-low-en.
Please embrace your talents, for knitting
Embrace the things that you can do sitting.
Dream wild dreams of letting go
& write/draw/read/sing & let it flow.
This is the best way to find YOU in your ability
Someone who helps you out is lessening your disability.
So grab for independence
It's OK if you need a hand,
Solitude around people
Can be found.
*songs I was inspired by today
R. Rogers/O. Hammerstein II - You'll Never Walk Alone
Foo Fighters -Resolve
Where independence was a natural occurrence,
Where people walk alone
& shop in the market
Without a need for another clinging to their pocket.
There are things so lost of healthy people
Like the freedom of choice & time
The freeness of dancing alone in a club,
To the freedom making words to rhyme
The reality:
Wanting to go & fix some caffeine
From a real coffee shop, from a real bean
Means waiting around until you can be wheeled,
To your destination in the urban field
For example, a trip to read books,
Can be lost on the non-dexterous
Or you need someone to look
Or some to carry & hold, such a fuss.
Off to the cinema
Where life is at best, a fix f' hypoglycaemia
Means a trip on the bus, did you get your right stop?
Did you fall when it wobbled?
Did you fit, did you flop?
Having someone around to help you to the show
Mean not getting lost or a sugar overdose
Means someone to hold you when you body ticks
Means someone to hold you when the bus kicks
(The time you have to bust a move
Becomes the time you have to bust your groove,
But don't let this get your down, Claire
You can sit & dance away in your chair.)
How to resolve:
They are times when you feel alone,
In the bad way when your pain has over grown.
But there are others going through the same
And enjoying your own company will keep you sane.
Instead of walks alone, the sweet silver song
Your carer, paid or otherwise, does not belong
In your thoughts, they are all yours to sing
Aloud and inside, & think your own thing.
You don't have to say a word
If you want the peace & quiet,
Mumble your needs to them
And no fuss or maddening riot.
Dreams of flying can be real
If you only stop and feel the breeze,
If you can't make it out that day
Open the window & breathe your cares away.
Maybe stop & dictate a poem
on your speech software & think, a-low-en.
Please embrace your talents, for knitting
Embrace the things that you can do sitting.
Dream wild dreams of letting go
& write/draw/read/sing & let it flow.
This is the best way to find YOU in your ability
Someone who helps you out is lessening your disability.
So grab for independence
It's OK if you need a hand,
Solitude around people
Can be found.
*songs I was inspired by today
R. Rogers/O. Hammerstein II - You'll Never Walk Alone
Foo Fighters -Resolve
Monday, 5 July 2010
Clairepie's blog about getting disability living allowance taken off her.
We'd been trying for months to get a home care company in, after people ignoring our calls we found chrysalis homecare, who where/are AWESOME. A few days after getting my health and safety visit from them my tribunal came up, and the idiots took it off me.
It started in August 2009 when they lowered my care component because, as I didn't know at the time, the renewal form didn't have enough info on it. Instead of telling them again and again what I go through, I said nothing has changed in my condition...mistake number 1.
2.My other mistake was not complaining enough to my doctors
3. My other mistake was not realising that the tribunal would be so hard on me physically, mentally and emotionally/
4. My other mistake was having a "good" day,at the tribunal meaning pain was lessened but brain was foggened!
5. My other mistake was not getting a representative in for it. (I wanted Oli to be it, since he knew me and was a clever clogs)
6. My other mistake was assuming that the tribunal would be nice people with a sense of humour.
7. My other mistake was being myself, and not putting on my posh voice (My Scouse accent gave the game away that I was lying thieving scum. Scum, scum, scum.)
Luckily Manchester Advice are there helping us out, we have a case, there were a few errors in law, so we are hoping to see "the guy" to help us out.
So here I am with no home care, no healthy dinner, no regular exercise, no weight loss, muchos stress with a gall bladder removal coming up this month.
As disabled people and their carers are suffering more and more heartache as money is cut, as it gets harder to live independently.
I am still haunted by the story of a lady in America, who killed herself as she could not afford health care to treat her FMS.
Will that be us in the future? Taking money out means taking people out of work, out of society, which damages reach to everyone of us, disabled or not. Taking away the money means taking away the rights of disabled people & their carers.
I am here for the fight with what few spoons I have to offer.
UPDATE:
Gary the gallbladder is out & I am doing well now it is gone, almost time for me to get back to exercising! Got some awesome news today from Micheal at Manchester Advice, my appeal is being looked at in the upper tribunal & it seems like I may just get my DLA back, enough to pay for home care to help me out *chair dance as left knee is Out Of Order!*
Bad news if this happens though (claiments face to lose benefits), I know from personal experience of HAVING too live off benefits that sometimes Incapacity Benefit, or the similar part in the ESA, that it's all someone may have, after spending time contributing their national insurance this may be taken away....I am going to ask for mine back, so I can spend it on something to cheer me up, like a hit man, or something!
http://www.fibroduck.com
It started in August 2009 when they lowered my care component because, as I didn't know at the time, the renewal form didn't have enough info on it. Instead of telling them again and again what I go through, I said nothing has changed in my condition...mistake number 1.
2.My other mistake was not complaining enough to my doctors
3. My other mistake was not realising that the tribunal would be so hard on me physically, mentally and emotionally/
4. My other mistake was having a "good" day,at the tribunal meaning pain was lessened but brain was foggened!
5. My other mistake was not getting a representative in for it. (I wanted Oli to be it, since he knew me and was a clever clogs)
6. My other mistake was assuming that the tribunal would be nice people with a sense of humour.
7. My other mistake was being myself, and not putting on my posh voice (My Scouse accent gave the game away that I was lying thieving scum. Scum, scum, scum.)
Luckily Manchester Advice are there helping us out, we have a case, there were a few errors in law, so we are hoping to see "the guy" to help us out.
So here I am with no home care, no healthy dinner, no regular exercise, no weight loss, muchos stress with a gall bladder removal coming up this month.
As disabled people and their carers are suffering more and more heartache as money is cut, as it gets harder to live independently.
I am still haunted by the story of a lady in America, who killed herself as she could not afford health care to treat her FMS.
Will that be us in the future? Taking money out means taking people out of work, out of society, which damages reach to everyone of us, disabled or not. Taking away the money means taking away the rights of disabled people & their carers.
I am here for the fight with what few spoons I have to offer.
UPDATE:
Gary the gallbladder is out & I am doing well now it is gone, almost time for me to get back to exercising! Got some awesome news today from Micheal at Manchester Advice, my appeal is being looked at in the upper tribunal & it seems like I may just get my DLA back, enough to pay for home care to help me out *chair dance as left knee is Out Of Order!*
Bad news if this happens though (claiments face to lose benefits), I know from personal experience of HAVING too live off benefits that sometimes Incapacity Benefit, or the similar part in the ESA, that it's all someone may have, after spending time contributing their national insurance this may be taken away....I am going to ask for mine back, so I can spend it on something to cheer me up, like a hit man, or something!
http://www.fibroduck.com
Thursday, 25 March 2010
3 mental months
It's been a mad mad few weeks. It started with the 28th of Jan, me & Oli went to Manchester Skeptics in the pub, the next day we where at a friend of a friends gig and I boogied for the first time in ages around my walking stick, the next day we where at a protest (http://www.1023.org.uk/the-1023-overdose-event.php) then I went to my improv workshop, then I went home and fell asleep on the couch! The Sunday was geekery, that night I asked Oli to marry me, the silly git said yes!!!
In between study and geekery and impro and the gym I have been organising an engagement party and a wedding! A Steampunk wedding!
So it's been pretty mental recently so I am really tired. I really want a break! Luckily I have my birthday coming up woohoo! But in between all this I am still fatigued and my mobility is limited and I am still in pain, I honestly don't know how I manage it....... can someone tell me?!
In between study and geekery and impro and the gym I have been organising an engagement party and a wedding! A Steampunk wedding!
So it's been pretty mental recently so I am really tired. I really want a break! Luckily I have my birthday coming up woohoo! But in between all this I am still fatigued and my mobility is limited and I am still in pain, I honestly don't know how I manage it....... can someone tell me?!
Tuesday, 1 December 2009
Quack Quack Punch
Dear Claire,This is in response to an email I sent about fibrofix and it extends to the recent spate of twitter requests I get from alt therapists and cure merchants. I am a little annoyed at the FMAUK for not having the balls to do what Ben Goldacre does http://www.badscience.net/ or to bring the latest research and advice to the people like http://www.fibroaction.org/ does.
Thank you for your e-mail. We at FMA UK always tell people that we don't recommend any treatments and point out that what might suit one person does not necessarily suit the next and anything that is expensive is to be thought about carefully. One of the problems we have is that occasionally people do find these things be they drugs, drinks, creams or therapies helpful. The best advice we can give is that there is no cure at present. I think from a legal point of view it would be very difficult to do anything about them en masse and we at present can only work on an individual basis as people ask us about these remedies.
The NHS look after me well, I have gotten back a lot of my life on the physical and mental support I am offered (from medication to CBT and hydrotherapy) I feel that these quacks are preying on vulnerable people (especially those in the USA) or people who's needs in the UK aren't met. FMS cannot be cured but it also cannot be helped by quick fixes.
I am still fighting it daily and have for 3 years now, with meds, diet and exercise, it's hard and sometimes I lose the battles and it seems there is no hope.
But there is, it has to come from you though, if you aren't happy with your dr's advice, let them know, if your FMS symptoms are too much, let them know. Keep at the stretches you got given by the physio last year, keep at the CBT techniques when you feel hopeless, keep asking questions and don't be afraid to ask them. That is what fighting is.
Monday, 21 September 2009
Studying, extensions and headaches
I have been studying for a while now and really loving it. It has been hard but I am almost done with my science course and have a maths short course that finishes soon too. The hardest thing about it is that I am so delicate, anything can flare my FMS.
I started on Gabapentin the end of July because it was cheaper the doctor said. I should have twigged, I am a lady with expensive tastes, no cheap jewels, no cheap foods and no cheap clothes ('cos they fit badly) and certainly no cheap meds.
Studying is still a lot harder than it has been for a while, not becuase the work is harder but because I am weaker.
It's not a word I like to use but it seems that being ill has really knocked me for six.
So I am putting the study on hold after January, I don't want to but I have to. Maybe I will pick up another small course (Maths maybe, or a residential, even some sciencey voluntary work) but I want to be swimming 3 times a week and toning my body (because I have joint hypermobility too) plus getting back to some improv http://www.comedysportz.co.uk/regularWorkshops.html (sure Bron would appreciate the plug!) Because I have limited energy I can't have an active social life AND study.
Part time life is something I am slowly coming round to, semi-retired at 22 isn't such a bad thing considering what I have acheived in the last 3 years, moving to a new city, new job (lost job!) and university level study maths and science and a long-term relationship AND a guinea pig.
Thinks (that typo is for Laura B) are looking up, then down, then back up again with a general upwards trend!
So for now, study hard until October when I have my science ECA due in, study-light until January (for my Maths course) Then my time is my own to get all fit and til September when I return to studying with renewed vigour.
(All typos brought to you by my new laptop keyboard!)
I started on Gabapentin the end of July because it was cheaper the doctor said. I should have twigged, I am a lady with expensive tastes, no cheap jewels, no cheap foods and no cheap clothes ('cos they fit badly) and certainly no cheap meds.
Studying is still a lot harder than it has been for a while, not becuase the work is harder but because I am weaker.
It's not a word I like to use but it seems that being ill has really knocked me for six.
So I am putting the study on hold after January, I don't want to but I have to. Maybe I will pick up another small course (Maths maybe, or a residential, even some sciencey voluntary work) but I want to be swimming 3 times a week and toning my body (because I have joint hypermobility too) plus getting back to some improv http://www.comedysportz.co.uk/regularWorkshops.html (sure Bron would appreciate the plug!) Because I have limited energy I can't have an active social life AND study.
Part time life is something I am slowly coming round to, semi-retired at 22 isn't such a bad thing considering what I have acheived in the last 3 years, moving to a new city, new job (lost job!) and university level study maths and science and a long-term relationship AND a guinea pig.
Thinks (that typo is for Laura B) are looking up, then down, then back up again with a general upwards trend!
So for now, study hard until October when I have my science ECA due in, study-light until January (for my Maths course) Then my time is my own to get all fit and til September when I return to studying with renewed vigour.
(All typos brought to you by my new laptop keyboard!)
Monday, 10 August 2009
Small World
Well, facebook is making the world shrink......... I would love to hear your stories of small world meetings. My own, for some strange reason link to one friend in particular! Out for my 21st, I met Jeff in the Krazyhouse in 2005, turns out he was Walton born and bread so we knew the same people, but did not know each other! Now a friend of his also knows my cousin..... massive coincidences and a very small world.... do you have better stories?
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