GBE2 ~ Week 47 ~ Home

I took that pic yesterday morning before I slept and wrote this whatever it is...for those who know me will know at times I want to go Home. But really at those times I am just grieving the fact I don't bring home to my human body. Long times of being in various states of unwellbeing get to me at times and the tragedy of my story, the things i can and can't talk about cause me to feel pain, through my fear of further discomfort through loss of what I want to feel happy with life. Not always frivolous things, sometimes essential like ability to process oxygen through the breathing process, sometimes I would fail exams on that one.

I see home as a place we dwell that feels safe and comfortable, no matter what it looks like tatty or chic or lavish, a place we can forget the discomfort of being alive brings. I also see home as the place we go when we leave the flesh behind when we have done all we are here to do. When the place I am dwelling feels most home I feel less wanting to go to the other home. The ideal is making/creating/experiencing comfort where we dwell the body in which our spirit resides and the place where that body resides and where it visits, where ever here is now.

I was just going to write a quick poem but that didn't flow...it is 06.52 as i write this and after a lot of expressing stuff on facebook I may be all out of stuff to say now...

Home
is where the love is
last night the moon hid behind the clouds
I wanted to bask in its silvery light
feel the energy of the moon
leave it to cleanse my soul
a job I can do myself
I knew it was there
I just couldn't see it, feel it
veiled impenetrable
beyond my eyesight
fooling my reality into
seeing being believing
Knowing is feeling
feeling is knowing
the love of home
no matter if you can see it with your eyes
I understood for a moment
how thick the veil can be
and matter not a jot
how thin as well
yet nothing can get through
Home is where the heart is
the soul, the joy, the love.
Home is here and there
Home is every where
Home is in me
Home is in you
it may even be on the moon
when hidden behind the veil
or where moon beams shine on me
on my sunny side under the tree....
07.04

Dunno maybe should have left it! But I enjoyed it anyway...I'll maybe cringe when I look back...

Shenanigans of 'Us & Them' GBE2 WEEK #43 (3-11-12 to 3-17-12)

I've set intention...

hmmm just wrote something in my journal that I am considering blogging (first time i have done that for a long time, although there is one I didn't have the right time and energy to type up a few days ago, which may or may not....sorry). I am pretty sure it could quite loosely and firmly come under the title of She...damn how do you spell it....scrolls up to copy paste...Shenanigans....mmm I will quite likely be back ♥ x

All I have to do is type up my journal, maybe even just as is...not done this for probably over a year...I like it...

20.56 Monday 12th March 2012
One thing life has taught me, is to not take it far too seriously. 
Especially when it is serious. 
Moments where I have seen the horror on a loved ones face as they thought I may not make it much past this moment. 
Moments I have been alone with no witness to a moment I may die.
The moment sat on the loo, being administered oxygen and nebuliser by two (lovely) ambulance men around the bathroom door, just managing to hang on to live, to wipe and flush another day. 
(As well, just in case you are wondering.)
That kind of moment, all thoughts of other serious matters, like will I have financial means to keep living until I maybe can start recovering enough to live my dreams. If I can't do the work that my health has prevented me from doing, that I could do in my own time and in my own home, then I can't see how I could be fit enough to go out and do a full weeks work for anyone else. I have passion for the work my body has stopped me doing for so long. I look forward to the day i can attempt to paint a canvass again, or even work at a desk. 

At a moment like that even a night or more in hospital isn't important, it is merely getting the next breath and keeping the safety of an oxygen mask, until I can breathe alone again.

I am still hopeful that I will be able to build myself back up again to doing that as I continue to work towards the health to get back out selling my art & crafts. Which is also a part of my rehabilitation ~ art therapy to help me build strength, self worth and confidence after a long isolation with very poor health and a damaged, damaging environment.


I did it until I couldn't any more. I've got close to being able to do so again. I've been perilously close to dying and often long periods of following weakness, often suffering with malnutrition. All the time working on my mental, emotional and physical well being. Meditation helped me, along side other things, to find peace among the chaos, in all sorts of states of being. From ~ somehow clinging onto life to clinging onto motivations to live through this incredibly painful and difficult time. I only lost faith in ever decreasing moments that one day I will be able to maintain my health well enough to maintain my financial life, my home and my own health. It is ambitious and at times has seemed impossible.


I've learnt to have compassion for myself. As I heal on all levels, in each phase, I can laugh at the horror of taking it all so very seriously and the shenanigans of the power struggle that is being played off/out, each against the other that is going on in each of our individual lives and collectively. We all can learn to lighten up and work together. I remember ~ I am still here, still breathing, still living. *1


I am still having many difficulties to find ways through but I am alive and i have survived through so much. My life could be described as pretty dire but it isn't as dire as it has been right now, it may get so again. I probably won't enjoy it as much as an easy life in some ways. Yet i may enjoy it even more because the contrast can be so massively drastic. Bearing in mind that I usually understate things, such as how uncomfortable facing possible death can be, that may give you a clue as to how joyful simple things can be for me, or it may not.


I love life. 
Even with such hardship that i wouldn't wish on my 'worst enemy.'
Besides they have got their own inner demons to fight their own battles with life itself.


I wish for a system which would value any individual such as me, a genuine 'genuine' ill person and support us back to health. it may not happen in my life time. It may be the death of me. I may lose everything else that I haven't already lost or thought I have lost for a while, sometimes a long while. I may get better despite the system that was supposed to support enough for optimal health to be regained. I may be in need of more support, in fact I am. It may or may not be available, enough or at all for me to stay alive to become fit for work. At the moment I am alive. 

I have learnt to trust, that until it is time for me to die, in whatever way it can, the Cosmos will support me, through the health or the help I need to stay alive. 
Everything else is details.
Everything else causes me to have emotions and work out what these emotions mean to the story of my life. *2



*1 ~ unfinished need to eat, then type more but don't want to lose this so publishing now and will edit to add the rest...23.35 12/03/12
*2 ~ back to check on that kitchen 00.35 13/03/12 ~ 01.11 food ready - delish looking - eyes really hurting now, will abandon this until maybe tomorrow...I'll be back

Friday 16th March 2012 19.14
It's been a busy week, especially for this stage of recovery after serious and just relentless health problems. I will come back to this but as I know I have nothing left to give for the next few days in ability to type, especially from notes already written....so this will have to remain for now unfinished but I feel it still can be shared....I will come back to finish when I can...

How Upsetting? GBE2 Upset

Upset the apple cart
my fault I was thinking of it before I slept
dreams of kissing thin lips okay but not great
so my apple cart was about to get tipped out of bed
with that came indignant anger
upset to be disturbed
a button pushed....

Many things upset us. Some circumstances or person can upset us in ways that make us feel upset and sad, upset and angry, and all sorts of other ways to feel upset. All those feelings come from fear of not being in control and comfortable. When I saw the title for this weeks Group Blogging Experience, I thought yes write a blog, there is plenty of time. I have been pretty ill and tired, aching all over. I could have chosen to be upset about that a lot more. I have the assessment looming, work to be done in my house, no heating at home, staying with my mum, insurance to sort out, my world is being upset like the proverbial apple cart.

We see being upset as a bad thing to avoid at all costs. Sometimes we need to be upset to rethink our perspectives but we get caught in the trap at being upset about being upset.

The apple cart was badly packed
uneven maybe even dangerous load
it was spilled all over the road
opportunity now to pack it right
make the burden light
throw out the dross
that makes us cross
or keep it just for fun
which makes me want to run
quick hide
cos I may lose identity
if I let what will to be
moments let go of fear
I surrender to being free.

The thoughts and events leading up to this I have shared on facebook, quite extensively. I will add a bit here...

Elaine Edwards

It is looking like I may get there tonight...been picturing the process and am pretty sure I can manage it, if indication of peace and a right feeling are anything to go by. Now just wondering, if it doesn't change, which is the least uncomfortable feeling: using the walker with seat or not using it? People with limited energy have to consider these things, especially when conditions cause hospital visits almost unexpectedly. Our thoughts trip us up all the time, especially when illness has been prevelent for a long time and apparently dangerous at times.

My ability or inability doesn't always make rational sense, but it does make sense in the energy of the vibrations I find myself in with the thoughts I am thinking and past emotions I am processing because I didn't know how at the time. A time of completion is approaching and there may be moments again where I wonder if I will die this way or that. Tonight is not a night where danger of death is expected, just what levels of comfort or its lack. 4 February at 16:19

 To get there I have to do things I have been incapable of for a while again. But the energy is rising and as long as I can stay positive I know I can do it.  4 February at 16:21 ·

smiles...I've written this in private but I will share it because it is how it feels and it is hard to explain sometimes how i can be...

I can feel the energy rising to allow me to go...I managed a bath last night and to sleep upstairs...

Elaine Edwards
and although I had to take it easy when I woke and had to put on a few clothes to come downstairs I wasn't gasping for the nebs when I got to my chair...

Elaine Edwards
I was just talking to her about the night i was able to go out after a bath...the weekend before I went into hospital November...
scalding my arm and being able to deal with the whole getting dressed thing as if it is never a problem...that always stuns me how that happens and it could so easily be seen as I'm putting it on the rest of the time to not be able to but the most recent hospital visit kind of makes sure that I can't be truely blamed of that!

Elaine Edwards
yes
Wednesday just over a week ago was a bit of a hard day and I had to wait for Dave to come and make sure Joey was restrained so ambulance would come in to treat me...I had to wait and it got a bit dicy, probably even more dicy in a way as I knew help would come but didn't know if I had left it too late for a while...which led to the will be famous being treated around the door while I hoped to make it so i could wipe and flush...never mind live to tell the tale, without blushing too much depending on who it is to!!!4 February at 16:41 ·

I have had the imagined conversations with the next atos assessor quite often but not constantly. Often I am quite cutting and on form when I imagine taking back my power and reminding them of the abuse they are trying to deliver to me.

I'm glad you survived the embarrasment!
Elaine Edwards
yes...it certainly has kinks in it at times!!!!
it wasn't exactly a moment of oh great this is happening...but it has provided some chuckles since...I was thinking didn't Elvis die on the loo?!4 February at 16:47 · 
bless you...it is all designed for us to face fears and realise they are not so scary...I was thinking earlier about people who don't realise they are brave because they are so scared, yet they are still surviving, no matter how barely and have the chance to let go of the fears as they realise it just hurts to do so...or something! Feeling a mite tired now and need to get back into the flow of energy....smiles xxx4 February at 17:15
 just hurts to let them go but not as bad as holding onto them for a long long time...loved it and left this...We are different and the same...this is a beautiful piece of writing, explaining how you are giving yourself permission to be who you are, even though that can never fit into expectations of conformity. No-one has the right to strip away who we are, not family, friend, stranger, system worker or the media...hugs x
2 seconds ago ·4 February at 17:27 ·
I loved the feeling of, I could go. I was even still planning on going after the impromptu family gathering. I'd scrapped the idea of going home first to get my jeans on instead of the comfy leisure trouser things, that are bearable to wear for comfort. I don't feel comfortable in jeans for hours on end like i used to and all the trouble to go to the loo with them, the extra work. When you are just normal tired it can be a bother but when you can hardly move for weakness it drains on the miniscule energy reserves too much. I'm sort of glad i didn't go. I am really very tired now but it was lovely to spend an evening with my family. A rare treat.

I think it would have been good if I'd got there and I think I would have been safe as well as able to manage. I think the fact I can still think positively is what will bring me back to a physical, mental and emotional well being that has eluded me for years. There is more stuff to work through, my house will reflect the turmoil as it transforms back to being fit for purpose, just as my body does...it will happen because that it the way my life is unfolding and I am holding the vision, working through the doubts and realising my potentials as I move through this phase of life...Sunday at 01:20 ·

it is when positive thought becomes the most predominant that things have gone forward, then doubts and worries have held things up...but it has been a brilliant learning curve...smilesSunday at 01:24

there was talk of the learning curve being like a monster...think it is time to make a lochness monster with a pretty back that has spikes, peaks and troughs, they come and go in the merry go round of life and positive thoughts are always on the tail...smilesSunday at 01:40


Think I am going to go up to bed as well...before i fall asleep in the chair while I am thinking about going to bed...it was a surprise the other night to wake up about four hours later aching like a mofo!Sunday at 02:09 ·

I'm doing a bit better, I may even be okay to go out unsupervised soon...lol...it's been a lot longer than I had noticed since I have gone anywhere alone...or even anywhere apart from hospital and one visit to tesco when I tried the mobility scooter out, which was over a month ago. I need to get a life again...smilesSunday at 16:10 ·

What's my next step? Oh boy!

Elaine Edwards I'm part way through one & have several to go until life is given more of a chance....

 Elaine Edwards Britain is going that way...it is scary...I guess I would have died already if I lived there though...here it is only a matter of time if I keep going the way I have...
13 minutes ago ·

Elaine Edwards hugs...when I have got my house to be at least safe to live in again...maybe I will start writing...I kinda want to do the upset gbe this week...about the way ill and disabled people are abused by systems in so called civilised countries such as ours...the step I really want to be making isn't so about survival, I want to write from my experience, factual & fiction...
9 minutes ago · Like · 2
Elaine Edwards something that says about politicians having damaged vegus nerves...about the power of the mind and diet to get through things...how to break out of the fear...and I know a thing or two about how biological and psychological attacks cause us to further have immune problems...I see how abusive the system is, it is shocking but I must not let the fear and horror of it get me...if I can live through what I have already I must be able to learn to deal with the emotions and fear that can cause me to shut down my ability to breathe...putting me in hospital before the NHS falls apart and I am no longer entitled as I am not able to pay...
3 minutes ago · Like
Elaine Edwards I can do punctuation & grammer better when I am a bit better than I am now....I can at least walk about a little without it being actually dangerous now just got the pain in the body to deal with right now, that is almost a doddle!!!!
2 minutes agoYesterday at 02:31 · 

Truth Theory

when I saw the title I just thought how the truth is so essential for happiness, every part that has to be hidden to keep the peace or the feeling of dignity is another part of us we shut down or hide a part of us away...it can be very tough getting the balance right...cos society is oh so quick to judge, so more and more becomes things we must hide...it is a wonder anyone gets out of life sane...maybe the ones who keep the blinkers on have just learnt to be insane to fit in with an insane world...I'm feeling a bit bleaugh about it to be honest....smiles Yesterday at 02:40  

on what is the most spontaneous thing i have done...

Elaine Edwards I suppose there are a few...somethings start with a thought....like I'm going to shave my head for charity...you know the rest a no5 and allergy to the bleach before it was dyed purple and the rest that follows may suggest that impulse was possibly not such a good plan cos who plans on disability and illness...i hate to admit I am often disabled...then there was the little pointers towards going to Turkey alone in 2007 and booking it the following day, now that was a fun adventure and so was fundraising for the hair thing...I have learnt a lot about healing through being sick and still working on it...maybe when I have cracked it I will have more answers...
  ·

There are a few moments with some men too, some could be considered rash and ill advised...whistles, looks innocent...fails

Saying that all experience has given me more clues to who and what I am and what my life means to me. It may mean a few different things to a few other people but it is after all mine. I want it back and I am finding the way to do that....there may be a few steps to do that but I know it can be done. I can do this...15 hours ago  

Nothing more tempting than temptation you desire...

 I realised a long time ago I can be persuaded to do absolutely anything, that I WANT to do...sometimes I can be persuaded to do things I don't want to but try to tempt me with things i don't want and I may get a bit irritated...15 hours ago 

you wouldn't like me when I am angry....I can be a right cow!!!!

Elaine Edwards some of my videos could be called spontaneous...in fact virtually all of them!
17 minutes ago ·

Elaine Edwards and I sometimes look at them on youtube and think should I leave this here?!
17 minutes ago ·

Elaine Edwards I suppose many of the actual life changing things that have happened with me have been due to me listening and acting upon that little voice of do this or that...I established my relationship with my ex husband on acting on a thought...I'm bored...Fancy a coffee...
15 minutes ago ·

Elaine Edwards I was being hassled in the pub close to closing time, I turned round to my future exhusband and his friend and asked if I could talk to them cos of this bloke...they said yes and virtually ignored me but at pub shut walked me home as they were going that way anyway. At the corner where my flat was and they were due to depart I had the I'm bored thought and without further thought asked them in for coffee...they were snowed off the local RAF camp (now army). We drank a lot of coffee, ate toast, talked laughed and then after dawn I went to bed leaving them a blanket between them! They took me shopping the next day and we went out and all got a bit drunk, we got together than night...if I remember rightly I was still forgetting his name even then!
2 seconds ago ·

Elaine Edwards I wouldn't regret a thing, I would tranform into the between lives and probably start planning a return to another life...saying that the other day just before the ambulance men arrived I thought I may die before i wiped and flushed...it is humbling being treated with oxygen round a bathroom door and still it taking a while before you feel more confident that may not be the way you die and being quite happy about that! I have faced the moment several times the last few years. I reckon I have more to do before the actual day but when it comes I will not fight it. Fighting it hurts, so far each time i have surrendered to the possibility I have found peace and survived. I wonder how idfferent it will be the day I don't stay.

I suppose you meant what would you change if you survived more than what would you change in the last day...one day only gives times to change perspectives yet again...smiles...I am finding more peace and keep on moving in the right direction to make life more easily comfortable...
2 seconds ago ·14 hours ago ·

Elaine Edwards haha just remembered in my head for the first couple of days he was 'the other one'...I'd ask his friend what's his (= the other one's) name
A few seconds ago ·

Elaine Edwards I love the way fate walks all over us...lol

I've thought about who is the one? I haven't met him but I have met some that were close enough for a while...
2 seconds ago

Elaine Edwards I reckon there are predispositions...I wonder if I'd ignored him then would we have met again...it would mean I had different children and a different life...a friend I am no longer talking to made a huge impact on my life. I wouldn't have ended up having some incredible experiences over the last few years if I hadn't known her and met many through changes she brought to my life...she was someone I instantly 'knew' although we had to learn the details...and even now I sometimes know she is thinking of me and how, with anger or with sadness...I find the anger a bit uncomfortable...smiles
2 seconds ago 14 hours ago

Meditation is calling me and issues to sort out as my chest constricts and I feel a minor suffication as I let go of the tension I am holding to let go of...

Burp...classy gal me...grins

Elaine Edwards Smiles...I've been thinking of some past passion...I may not find more but I think I will...whatever happens it will be okay...never sated passion, so it is a kind of an ambition...alongside writing my book/s...thinking of wishing on the full moon my list of my desires...or something...just been meditating and may just sound like a mad woman but what the heck...smiles

Phew just sat out in the cold light of this February full moon...it is beautiful...the breathing has calmed as I worked through some energy work, there is more to come...

time for the epsom salt bath...I did wonder if bathing would be a dangerous activity tonight but I have worked through that blockage...for now...

I managed my bath, it got slightly dangerous but I managed to get out of the struggle, relax and breathe...smiles

I thought up all sorts of maybe not hilarious ways to describe my last apparently serious inability to breathe. Including the thoughts that went through my mind as I struggled for oxygen and fought myself in a battle for my life. I remember wondering if I lost consciousness what would happen, would they be able to revive me would they wipe my bum and pull my pants up? If I died would someone flush the loo? I smiled and laughed gently as I thought of what I just wrote. I clearly remember having those thoughts and the only regret I would have had was how undignified it would be for my son, witnessing something like that. No-one wants the story of their mums demise to be anything to do with poo and loos...

As I struggled with breathe tonight, had I not been able to calm myself there was the possibility of getting as bad as that. I really did panic more than I would like to admit to myself that night. I'd got myself calm while I was alone and had a fit like it sat in the comfy chair getting concerned at how much longer i had to wait until it was viable to get an ambulance. To be fair I was maybe in a worse condition, cold, hungry, thirsty, alone and had known it wasn't safe to go to the toilet for a few hours of needing to. I was also in a rationally unsafe position and condition. I was told I left it too long, which is why I became tachachardic (sp?). In the bath tonight I knew i was relatively safe. If the breathing got so bad I needed the nebuliser I could call my son, wake him and get help much more quickly anfter being far less time of finding it easier to struggle with the breath than let go, surrender to allow my body to breathe for me as it is supposed to do and does when there is no restriction, physically, mentally or emotionally...10 hours ago ·       

Ah now I am sleepy...looking forward to see what dreams happen now...grins...nighty morning night...9 hours ago ·

Well it was all going well until I was woken up and boy am I in a bad mood now.about an hour ago ·

It is the cardinal sin to wake me up for no good reason!! It can instantly put me in a bad mood that stops me going back to sleep and leaves me having to let go of anger...about an hour ago · 

A Love Story ~ Mooji

helping me release the anger...just a bit upset about nothing much really now...reminders held in his words stopped me from holding on to it and boy did I want to hold onto that indignant anger at being woken up for no reason when if I had woken up in my own time I would have been fine and ready to do what I need to do...as it is I am having a bit of a sulk upstairs partly to make sure I don't unleash my anger onto the person who woke me....Also thinking of the privilege not appreciated that I gave to a person to wake me no matter how much sleep i had to spend time together...in would have been a Wednesday and come to think of it at the time I was woken.

This is making me see two things...when we try to awaken someone to look at the world from our perspective and they get angry with us, why do we get upset? We interupted their dreams, they would have been interupted anyway in their own time. We may see it as urgent and the other person is just irritated by our need to pass on information that could have waited for the sleeper to naturally wake up. Offer information but don't insist in pushing it at your own speed, allow another their own speed.  about an hour ago  

When we are angered or irritated, we like to hang on to that feeling and really get twisted up by it. Yet it is just a message to us to look at what is really making us angry. When we get caught up in games of anger and retribution we behave in spikey unpleasing ways. It is not a comfortable feeling but it is familiar. So we waste an awful lot of energy feeding the anger towards the event or person that pushed a button, even if they 'should have known better!' If it takes us a long time to get to the conclusion or we include an exchange of spikey energy to further distance ourselves from our self, we have really forgotten to look deeper and let go of control...he says on one of the ones I posted yesterday about buttons something about as you let go of the attachments you let go of the buttons...and fear the loss of identity...I may be getting the hang of this a bit more...grins  about an hour ago ·

Nearly ready to appreciate the irritation, how annoying! Now I am laughing, it is so annoying to let go of righteous indignation.  about an hour ago · 

And funny.  about an hour ago 

Upset?

Nah just living and discovering my identity, really has nothing to fear but fear of fear...grins 

#spartacusstories if only life could be edited

 "I don't think I said what the significance of the water in the bucket from the leaking roof was, there wasn't a damp patch around it so I was very lucky it just leaked that much...smiles Today I have been to anti-coagulant clinic and I am very tired. I am also about to eat the baguette pizza, I nearly burnt my hand, just stopped myself from picking up the tray fresh out of the oven bare handed. I need to remember also to take my warfarin, which I forget too often causing more clinic visits and less energy for my plan to get batter and sort my immune system out, which has suffered after the initial steroids attack on it through years of ongoing malnutrition and added stress on top of other distress and stress from the DWP, Atos and the JobCentre. I wrote this earlier to my MP, while I was waiting for hospital transport to knock any minute. They were an hour early today. So an extra hour in hospital I would have loved to spend waiting for them instead! 

I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to. 

I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty. 

That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.

I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf

MOV01850[1].MP4 Monday 9th January 2012"

* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.


(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week  = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week


So far I have £47.74 left...


Water £7.79 a week...

£39.95 left for frivolities like phone, food, transport...


You may guess it already isn't enough to live comfortably, if/when it is cut further....


I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.


I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations. 


I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long. 


Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.


*Edit!* 
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.


Dear

Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.

Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.

I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.

Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?

The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.

I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.

Kind regards
Elaine.

Reflections of Bad Behaviour

The voice of the angry mob is often louder than the voice of reason, it shouts down reason with intimidation & wants immediate gratification. So please don't become a different angry mob, then we all lose.

..even more...

been thinking of how many views are being argued...

how the gov have done their job to create civil unrest...

how we may never know the full picture...

how intimidating some are in their calling for harsh punishment...

how we need to tackle the causes while healing the damage...

how the rule of the mob works...either way

how it is not as simple as good people against bad people...

how well this is working in further dividing us...

how it makes me want to say nothing for fear of being shouted at in a way...yes my most deep rooted fear that closed me down so much in my formative years, confrontation of the me being wrong & the other being right, no matter the truth. Often being that both were wrong and right. If we learnt things differently we may learn to deal with the things we bottle up that become aggression waiting to happen. The things that support that are being eroded. It is easy to blame those who have lost common decency, the rioters or the system that has created the right ingredients for people to lose hope, pride, dignity and be ultra reactive.

Just thinking of the video I posted a while ago by Russell Means about how America has become the reservations and I could see so has Britain. When you listen to the history of what happened to the American Indians and how crime became more normal a way of life for many. Civil unrest has been on the cards for a while, the hoodies are the Indians, alongside the disabled, ill, unemployed, low waged, single parents and any other scapegoats that get a turn in being blamed for all our countries ills and the cowboys are directed by the elite. Of course there is growing calls to scapegoat them too, even if many have been terribly greedy and badly behaved, claiming huge expenses when normal people are struggling, media playing their part too. Thing is the 'sides' are less easy to spot now. The resentments against others who appear to have an easier time are still gaining momentum for many.

There is propaganda and alienation between so many groups of people who would have stuck together in other generations. I don't mean offence to anyone, especially American/Canadian Indians, their history is a disgrace to Europe. Again the ordinary person was very much swayed by propaganda and the belief that was spread of the non human status of Indians, the savage that became then romanticised and demonised all at the same time. Without fully understanding the reality.

We make conclusions so quickly with minimum effort put into understanding it for the good of all.

We do know that fairness in a society tends to create better communities. Unfairness in vast proportions breaks them down.

What are we learning here?

Where do we go from here?

Will we lose the precious little of our rights to protest a little more through this?

Maybe the new youth centres will be detention centres, that will cut costs eh?

We were making progress in many little and large steps to make our country a better place for all but those have been swiped away so quickly in just over a year...and yes I know some of these things were already in place. Atos was already denying illness and disability in many who are struggling to survive. Although the first medical I had in 2009, the assessor understood my condition and treated me like a human being. It had changed drastically by June 2010. I don't know if I was just lucky the first time and that assessor is probably no longer working with them. The surprising ease with which they demonised people on benefits, almost especially those on sickness related ones was very frightening. The rise in hate crimes and intimidation of disabled and/or ill people also causing more stress related complications have added to this fear. I had a breakdown through it, which was a good thing in many ways because it reminded me of other abuse situations I have been in and I worked through my fears of worthlessness and frustrations of health issues, making peace within. It nearly destroyed me but it didn't. I don't look down on those it does, nor pity them. I have vast amounts of empathy for those who appear to fail. I know I have appeared to fail so many times but I am still alive and I can still love.

I'm not boasting about that fact although I could be a little indignant about it. It was hard to keep on loving when things went the way they did in so many areas of my life. It is also hard to hold resentments and pain from the past. I learnt how to let them go, piece by piece, little by little. So I may not know the exact pain others suffer but I know what pain is, physical, mental and emotional pain, repressed pain which always finds a way to come out, healthy or unhealthy.

I can still love and I intend to beam as much love as I can as far as I can. I will get better as I continue to work on my emotional well being and building my immune system back up. Wanting to live is an important thing. A few days ago I didn't want to live. I worked through the fears of never having any ease of joy again. I had a very good conversation that reminded me of what my goals are and gave me the ease to sleep upstairs last night, back downstairs tonight but breathing has been bad, emotional causes understood.

We all hit rock bottom in different ways, some sobbing, some robbing, some shutting down, some exploding. We all also manage rock bottom differently and come out of the phase either more wounded or more healed and often a bit of both.

What goes on in the turmoil of the self can be seen in the dramas we play out in our life stories, in the little picture and the bigger one. To be badly behaved there is fear, pain and anger being expressed in an unhealthy way. That goes for the bad behaviour at the top and the bottom.

So maybe we need to think about how we can be a healthy society, not merely a further repressed one?

Greed, anger, abuse, deceit, violence and other bad behaviour stems from fear, fear imprisons us if we let it. Literally when we don't manage it well and become more badly behaved, although some opinions are not agreed on what is bad behaviour as there are many in prison for arbitrary laws too.

this was just a bit of me thinking aloud...is it still allowed?!

I probably should revise it before posting here but I will maybe later! I just posted this on my facebook. As I chose a title for here I thought of reflections, as it is me reflecting upon the reflections of fractured society and how that reflects on us all. We could really do with more of us understanding a little of the psychology that we need for self realisation, which some find without help or understanding the principles but just naturally work with them but many struggle with. When we understand underlying reasons for things we can work on better behaviour and reactions to bad behaviour. We can step back and respond with deeper wisdom. Even so called stupid people can respond to the deeper wisdom that resides sometimes hidden within us all. People often sound stupid when they are behaving stupidly. We can all be stupid, we can all be ignorant, we can all offend, we can all be the worst expression of ourselves. We can all also be the best expression we can be.

We can also forgive and learn, not forget because our experience is with us till the day we die and beyond depending on what you believe.

Last time I went out of my house was 10 days after the time before. I saw the man who raped me. I had to walk past him to shop for essentials I had run out of. I didn't feel the fear, he was no longer a threat. It has taken me 17 years to get to that point. With better support I may have got there quicker. I still wouldn't deal with seeing the man who assessed me fit for work last year as well as that. I still have fear of being abused by the system again. I'm pretty sure I could 'make' the man who raped me pretty impotent if he tried it again and not by physical means, not that he is likely to. Words can work very well, so can laughter, in the right places. A tool of abuse is manipulating peoples fears, gaining their confidence or the confidence of onlookers to manipulate even more. A tool of healing I suppose is manipulating in ways yet it asks that we look at our fears and see where we use them as an excuse not to love something or someone, especially our own self.

Another view of my progress and process...

my single bed downstairs, now I have comfort for when I can't go upstairs or can't sleep in my bed. also house now it hasn't got carpet after my son helped me take it up and clean the years of dirt from under it...found tiles throughout, they are not great but they are better than stinking dirty carpet. I am slowly making my home support my well being and have had to wait for windows of well being to do so...smiles...

MOV01224[1].MP4
Wednesday 9th June 2011 at 04.12 length 6.20

I must add these statements just made to the details of ze video shared here...

there is what could be called a gratuitous boob shot I didn't realise I was pointing the camera at my boobs!

but yeah I think it is pretty good apart from that!

and talking to my doggy all daft voice...lol

I'm clothed and wearing a bra as well....but boobs is boobs eh?!
I've fleshed out a bit the last few weeks...been skeletal for far too long!

I been tired but it does show lots of change...and me

having t'internet troubles posting things on facebook...so I tried this without mention of boobies in the title see if it would help I edited it out but it still kept the title when i tried to post so I am starting again same post....

Nothing To See Here!

Changing this as I posted it again and can't delete blogs....does anyone know how to delete a whole blog?!