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Aug. 21st, 2014

lost

lost ...

It is said and has been said to me that I am socially isolated by not being online, that it is said that people, particularly the disabled who aren't online are being left out and are socially isolated but I feel more isolated now. LJ is empty, some people have closed their accounts there and elsewhere feels utterly empty too. I've found messages found from those passed on and messages left from those no longer in touch, both cause sorrow. The news website, Ananova that I lived on is gone and was where I got all my quirky stories from. UKP would break my heart after it had been so busy, forums arent the thing anymore. Then I went to find the ghost story website I'd loved and missed, couldn't remember its name only that the owner & ghost hunter was also called Rowena. I did a search, 'Australia ghost stories Rowena' got to the site to learn she died young in 2008.
It is 6.5years since I had the Internet & it's unbelievable how much things have changed and how split everyone is from where they were together :-(
I'm really not wanting to go on Facebook, I've had at least 4 carers utterly addicted to that driving me crackers doing that and not what I need and have had multiple carers with major problems caused by fights or flirting on there :-( And I gather that friends of friends can see what you write, no flipping way :-( I really can't see me using that one plus I never use my own proper name online-ever
I am feeling really really lost :-(

Aug. 12th, 2014

laughing, pleased, blissful, happy, content

Hey ho, unexpected Internet access ...

Bugger me but I got a smartphone today! Just under £ 50 from Argos & it works fine I think going ok :-) Signal is SUPERB! Photophobia still a bi tch but good settings on this to switch about . Didn't expect this when I posted on Saturday. Will be good to get back & to start to fix the hidden posts of so long ago. Dunno where everyone is posting these days but I wont be doing Facebook or Twitter so let me know where people are posting these days :-)

Aug. 9th, 2014

strength, battles, trouble

Briefly signing in ...

By heck it's been a while. I'm still alive! Bugger me, didn't expect that to happen! And this handsome laughing dude is our Tom, one of my 7 cats. Dear old Susie got to 26 but died last year in March :-(

Tom laughing

Still don't have my own internet connection but Do have a few more medical conditions to add to my list, not sure when what got diagnosed so here goes with the newer few of the last few years:
Sjogrens, sarcoidosis/sarcoid, arthritis, oesteoarthritis, sympathectic nerve dysfunction, connective tissue disease, dry lung, ogilvies syndrome- so rare there's no statistics.

Still getting carers in, they come twice a day now & I'm stuck on pureed or soft food which is f'king revolting. However I'm still keeping my little old brain going with doing the dolls house miniatures which has greatly expanded & taken over my world.I'm working on a Zombie Graveyard with Grime Reaper too- & that's no spelling mistake! I've started a new blog to post about that when I can as I'm never going to get that website done - ever!! So find me there if you'd like.


http://rowenasminiatureworld.blogspot.co.uk

Aug. 29th, 2011

strength, battles, trouble

a hard post to write

Old news to us but not public. A couple of weeks after my last post I began to be unable to cope. I always said that it would take a strong man to be able to be with me, to cope with all my illnesses, disabilities & all that these entail. I had found that man, Herneoakshield, after over 10 years of being on my own. I would never even consider letting anyone into my life because I knew it would be so difficult, but I had always thought of how the other person would be, I hadn't considered myself in this. And then ... well I could Never have forseen it would be ME that couldn't cope with a celibate relationship as I can't do .. well anything...:-( I just couldn't mentally cope with it & my stresses got extreme. Herne was wonderful, he never pushed me just supported me, he was kind, loving, caring, I couldn't have asked for more support, but I couldn't cope. It was such a shock to find that it was Me was wasn't strong enough to cope. The realisation of this was devastating. Part of me wishes that I'd never gone public in saying that we'd got together but it was too lovely to keep quiet, too special to not tell the world when Herneoakshield is such a phenomenally special man :-) It was lovely to be held & wanted after being alone over a decade then someone there who wanted me, wow. He will always be very special to me. My inability to cope was devastating to myself & for Herne even though he says he understood ... Eowyn was never meant to have her Aragorn :-(

The Sjogrens, connective tissue disease has taken the soft tissue from the bottom of the balls of my feet, a few years ago it took the toe pulp which was incredibly painful, & now it's taken the soft tissue I need to walk on. They thought it was athritis in my feet at first but the medics still have no idea how to help or treat it. I have no movement in my toes & can't move my feet to walk up a slope. The only way up is to turn sideways & this is for very low gradients.I used to walk very steep hills on a regular basis, 1 in 4, 1 in 5 as normal. The pain in my feet is horrific & its affect on my ability to get out is even worse. I have a lot of illnesses, diseases, thousands of symptoms, battled them all, but this is devastating.

I have the powerchair but like all of them, it's a heavy bugger, 12 stone, plus ramps to get it in a car, many cars won't take them. It folds down to a cube, some 2-3 foot in size. None of my agency carers can get it in their cars, so my regular shopping outing is looking less & less possible. By Yule it may well be utterly beyond me which would be completely devastating.

I have found that agoraphobia gives me a funny thing when in the powerchair, like I had with my car when I could drive, I panic about it breaking down to the point of becoming neurotic. But its the aspect of perhaps not being able to escape should it break down. The ability to have the access to an escape route is essential to me. It's freedom is great but the limitations are horrible. Only my parents car can take me anywhere, then the smallest of steps is an inpassable mountain, these are ancient market towns, these shops can't realistically be accessible. Grassed areas are fine in good weather, but if it's been raining you're stuck & sink. I hate the way people either completely ignore you in a powerchair or watch you, it's quite freaky. I may be extra aware of that because of the agoraphobia bit but hard to say. Herne recently said something lovely to me when I was out in the wheelchair & feeling ugh about it, I do my best to try remember that. I'm just very sensitive to things at the moment with what happened, still being fucked over by Social Services, my support agency & their 'carers'. My father & I continue fighting. A new PCT decision has decreed that my morphine is, to save my doctors money, to be a different brand each month depending on what's cheapest at the time, plus will be a MIX of brands to be taken at the same time. This contravines NHS & BNF (British National Formulary) guidelines so I'm to fight it because this is extremely detrimental to me & my already shit quality of life. A recent nursing assessment told me I now have visible muscle wastage in both my arms, my new dentist told me last week that my mouth opening has shrunk even more. The future is exceptionally bleak.

Cat Cafe is busy, seven of my own indoors, three ferals trying to move in & other regular feline callers too, thank the gods for them.

May. 30th, 2011

laughing, pleased, blissful, happy, content

hello ....

What a time the past year has been, mostly awful & finally fantastic thanks to herneoakshield (t-hermit on here). I still have no internet access. Before I write anymore though I have not been online since the shocking death of Ruth (catcrimson, kittyscarlet) in August last year. When her sister rang me I couldn't take it in. To be honest I still can't, I miss her so much. I have a box of her jewellery that her family sent me which I treasure & also wear with pride, I miss my darling Ruth so much ...

I now have seven cats, I lost my beautiful adored Stormy in November at just 2.5 years old to FIP - a hidden genetic killer. I still have Susie (now at 24 the oldest cat at my vets surgery), Rosie Whiskas, Tobacco, Phoebe, Daisy, Stoney/Tubby & Tom who ripped his leg open Saturday week & required urgent veterinary treatment & 11 stitches in his leg. I'm still running Cat Cafe for my visiting ferals, two of who are fussable. Got 40 patrons neutured to date. 

Some of the battles, as last written here SS fought me, since then I've had two more Care Managers & get to meet my new one tomorrow :-/ I did get my refund of monies owing, almost £700 in care paid for but not recieved, that took a year to get back & I am owed approaching the same figure again now. My carers are proving appalling, failure to cover the calls, to do what I need, to do as agreed & trying to kill me with germ warfare that would put a terrorist group to shame ...I am sick of the bastards - when the carers are good they're fantastic, when they're bad they're appalling.They have no concept of pain or hidden disease.

After a battle of decades which I won in February only to lose in December, too long to go into, but then thrashed the bastards in May - I have also been fully & conclusively diagnosed with Sjogrens Disease/Syndrome - connective tissue disease that has gone systemic & is also the cause of the severe neuropathy I have of my central nervous system & sympathetic nerve dysfunction. No cure, but heavy steroid injections that can only be given via a specialised hospital to attempt to stabilise my condition.

So lets get to the good bit, the very good bit. I left the best til last ... herneoakshield & I are together :-) It's only taken 6 years no rush lol But absolutely worth the wait ... It's been dreadfully hard for me to let anyone in, these illnesses of mine are brutal but he's not letting me hide anymore. On May 12th we met at the abbey where we first met so many years before & we shared our first kiss there ....:-)

No-one has held my hand for over ten years. No-one has wanted me & I'm a sod for keeping people at bay. Life has taken a wonderful & fantastic turn & I am so very very happy for it :-)

Hope everyone is well, I do think of you all often. May your Gods go with you xx


Jul. 10th, 2010

go fk yrself, fk it, f'king idiots

FURIOUS with Social Services ...

It gets worse, now I'm being called a liar & a hypocrite .... what did I write last time??  

"am being totally thwarted by SS (Social Services) etc, with them if they say something is RED then red it is, even if it's blue with black & white polka dots. BASTARDS. I still have issues with downright liars & perfidiousness. And they are prime examples. Over a year on we finally have their reply to our complaints, they've turned everything round, blaming loads on me"

In their response they refer to me as "being slightly disengenuous" about not using all the money in the Direct Payments back account therefore implying that I deliberately went without care last summer. 10 hours a week was being paid for & I was only allowed to have 6 hours. I was denied my weekly outing to town to hit the charity shops which I was upset about. I am NOT allowed to spend a penny, not a fucking penny without my Care Managers approval. Anyone want to know what disingenuous means?

Oxford English Dictionary - 'Disingenuous - not candid or sincere, especially in pretending ignorance about something.'

They are calling me a Hypocrite & a Liar, the fucking BASTARDS. I am NOT allowed to spend a penny of that money without my Care Managers approval & last summer, despite that account being massive, she refused point blank to allow me to use any of that money, the money that I am contracted by law to pay in weekly, but am not allowed to touch without permission. I have NO right to that money nor to spend it without prior approval, they know this, the law knows this, the Direct Payment Support Service have told me by at least 4 different people, three Care Managers have told me this, but no, apparently I pretended to be ignorant about it so it's all my fault. That's right, sure it is, just attack the integrity of the person they're meant to be helping as opposed to dealing with the goddamned complaint. Twist their negligence into me being a liar. The Fucking, FUCKING BASTARDS.    

I've been feeling really isolated here in dealing with this, really need some friends & strength ...


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May. 29th, 2010

strength, battles, trouble

Alive & Battling once more ...

A flying visit online ...

No good news to report, am being totally thwarted by SS (Social Services) etc, with them if they say something is RED then red it is, even if it's blue with black & white polka dots. BASTARDS. I still have issues with downright liars & perfidiousness. And they are prime examples. Over a year on we finally have their reply to our complaints, they've turned everything round, blaming loads on me for where I live (socially isolating - but you are MORE isolated socially if you live in a town or city & have people going on all about you but never seeing you exist), because 'I refuse to engage with NHS/CMHT mental health services' (I did not Refuse, this was due to my gabapentin, there was no appointment & no refusal to engage because there was nothing to engage with - And this mistake in my medical files was amended in my GP records in August 2009 & reported to SS as well when it was discussed! At the same time being discussed as my last CMHT report being Summer 2008 that said I would be absolutely fine if it wasn't for the extreme stress that Social Services were causing me - hmmm funny how that wasn't on their report hey?)) & because 'I refuse to be involved with the' local carers group. Except I used their services for 2 1/2 years until my volunteer left in November 2009. I am still awaiting a replacement volunteer which the carers group have been unable to provide - which is hardly my bloody fault!!  Nor are they the only ones screwing me about. But none of their arguements to blame me are the least bit relevant for our issues of complaint with them, funding, hours, inaccurate reporting, lying, failure to repsond to phone calls or letters, etc, etc. *sigh* Oh & they have an issue with my being Pagan too .... WIll attempt to try post Voice Posts here soon, if I can get it to work that is, then at least I can update.

 

Got down the woods for the first time in a year, it's right outside my gate but virtually impossible to manage. We missed the best of the bluebells :-( Still just awesome to get there again. It was my mum, me & get this, three cats!! Rosie Whiskas, Tobacco & Tom joined us, never thought I'd see that, walks with one cat was rare enough but now three?? Great photo of the three of them down the woods but not a bluebell in sight in that direction, behind the camera the land was a pale blue green mist, oh well. With the recent heatwave wherever I've looked in the garden there has seemed to be a melted puddle of fur sighing deeply trying to get cool, eight cats can cover a large area of a garden!

 

Leeds Hospital's specialist team is doing great for me, but a long way to go, there's no cure, no management, but understanding by medics is so crucial. My GP surgery is appalling as is my GP. The other surgery in town has the same reputation so no choice really. Got some massive battles ahead (SS, NHS, CMHT etc) so please keep me in your thoughts.

 

May your Gods go with you :-)

 
 


Tags: ,

Apr. 1st, 2010

nothing & everything

(no subject)

Phasmatis instar singularis, plagatus imperceptus

Feb. 6th, 2010

laughing, pleased, blissful, happy, content

Surprise!!!!


"The news of my death has been greatly exaggerated." 

Mark Twain

Okies, I'm still here!! Tis a very quick post, still no net access of my own, nor will have, plus have major problems using a computer too, in particular screens & typing so not going to ever be regular. But the next post will be less than two years away, is it really TWO years since I was last able to post?? :-( I've noticed much loved friends no longer posting on here with accounts closed, but also name changes to folk that I don't know who's who so I need to sort that out asap.

Quick news, health - still bloody awful, massive system fuck up, but hey, still here. It is very complex & getting much worse. I do have a powered wheelchair now but keeping getting out of using it as much as possible. Even that freedom has a high price. Got a cracking agency lass helping me in the home, the PA thing was a total disaster :-( Still living hidden away in my fantastic woods ;-) Been here over seven years now.

Oh & err, I've got EIGHT cats!!!! That was NOT meant to happen. Still got Susie, Rosie Whiskas, Tobacco, added ferals Phoebe, Stormy, Daisy, Stoney & Tom who is Phoebe's father but is also gay. If witnessing gay cat sex traumatises you then my home is just not the place to visit! Tom just adores grey boys & his favourite boyfriend is Stoney, whom he abandoned Stormy for. I hope to post photos of the furry babes next time, & maybe get their felinefamiliars blog updated too, they have sooo much news to share ... ;-)

Really hope everyone is doing well, I won't have time to check things out really. I've missed you ....

Mar. 24th, 2008

strength, battles, trouble

Medication - Garbage

I don't need an education
I learnt all I need from you
They've got me on some medication
My point of balance was askew
It keeps my temperature from rising
My blood is pumping through my veins

Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else

I wear myself out in the morning
You're asleep when I get home
Please don't call me self defending
You know it cuts me to the bone
And it's really not surprising
I hold a force I can't contain.

Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else.

And still you call me co-dependent
Somehow you lay the blame on me
And still you call me co-dependent
Somehow you lay the blame on me

Somebody get me out of here
I'm tearing at myself
I've got to make a point these days
To extricate myself.

Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else

And still you call me co-dependent
Somehow you lay the blame on me
And still you call me co-dependent

Somehow you lay the blame on me
Somehow you lay the blame on me
Somehow you lay the blame on me


Where is the woman who would fight to the death just to survive? I want her back to smash the fucking world apart.
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