So Close & So Far I Am

Looking at old pictures having shared a picture of a poem thing I wrote with a bit of a sketch on my fb, which I could possibly share here...although what I saw and made me laugh and reminded me of who I am at core along the way with who I am in moments...or something like that...

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Loving you is easy cos you're beautiful...

I did sing a bit of it....I sang it unheard by human ear (pitch perfect, I can sometimes other times I sound like an embarrassed (but not giving a flying fugg) strangled parrot) but it was being sung to all the beautiful people I know and all the ones I apparently don't. I'm feeling all kinda cosmic been having a lovely night and morning, been listening to Bill Hicks and thinking he is tapped into the cosmic intelligence that Abraham Hicks is and so am I am and so can anybody be and so is someone already so very special to me...

And I am feeling sound as a pound and a bag of mints
A feeling of bliss it would seem unseemly to share in the glare
Scrutiny for the physically or psychologically impaired
You know the ones society once thought should have care
But the climate we live in says you must not be capable of fun
How dare you have moments that you can enjoy
The taxpayers paying for you to be scrounging work shy
If you can smile and say you are one with the world
Then why can't you get off your lazy backside
Never mind you prefer not to share all thoughts that disable
Reality of the facts of your bodies actual labels
Symptoms that worsen the more they are talked of
A catch 22 in a way to actually be enabled back to well being
A choice I take away a little each time I moan of it being true
Which by the way I have proof it is real in physical symptoms
If I distract myself with thoughts of love I can do more
I can have a safe bath without remembering I once nearly died
Bringing up fear that restricts to the extent I can't breathe
Forget it and I can enjoy a nice soak let lose in daydreams
There is someone invoking a sense dreams come true
It was an awful lot harder with the muse now retired
If all goes to plan or even if will keep my well being
Not have to distract from reality seen with my eyes
Felt in every painful moment to find a little relief
From the reality that has made up my life these past years
My nature is vital and vibrant and filled with creativity
Being unable makes me want to just scream
This isn't life it is hell on this earth
Then moments meditation a drift into bliss
Orgasm crying burping expressing all a release
My saving graces in moments so rare
Apart from the crying that was over despair
I've been on this journey to see who we are
I looked in some mirrors reflections of all
I saw me in you and in him and in her
I saw you in me and I'm saying no more
Well maybe just this there is more to explore
I wonder if it matters who thinks I deserve
A chance to live my life a chance to be heard
It doesn't much matter I am me anyway
It time for a new chapter to get written and play
You see this old story is mine as it is
It is also so similar to some others I know
It is only a story my perception has lived
The next chapter always starts where we are
Being created along the way from where we have been
The joke in the cosmos is we believe in this game
I guess we do cos it's true cos we feel it so real.
Elaine 10.42 Sunday 2010

Not slept yet since whatever time I woke up last night, can't even remember how long I slept now but it doesn't matter. It only matters if it has to. When it has to matter more of the time I have been quickly getting ill. I'm not so keen on the old escape fantasy of a life that is sometimes overwhelmingly hard being ended. I always calm the fugg down when I have to due to inability to intake enough oxygen to function properly, notice the word fun in function, when we do function, we are also able to more easily enjoy fun. I think I may have tangented there a little? But hey this is my page and I can do what I want. I can write what I want and dream what I want, this is a free country and not a fascist regime is it not?! Or does the very fact I can dream and can imagine being well and sometimes even feel that, even if it is mostly because I am in deep meditation or enjoying amazingly cool conversations. These things help me find the energy to feed myself more adequately and even take in oxygen better.

I believe I have the right to live and to choose how to recover from severe physical and psychological difficulties that have severely limited my ability to be who I am. An artist, a writer, a craft person, a visionary, an abstract thinker, a cosmic joker, a heyoka, a so called poet, a lover of humanity (but not in a sluttish way except for the lucky chosen!), a compassionate person who wants to be able to help people find their own inner power, that maybe it doesn't have to be as hard as we make it...that the truth resides in your heart and when you can see with your heart and your mind it makes everything so much nicer, but till then you may just see me as something beneath you and that is okay cos I don't see you above or beneath me.* I just see you as my equal as you are a being human too, no matter if you are so hard hearted you would judge a person more vulnerable than you as less than you. So whoever may ever read this, like it or not you are as I am, a being human and I see you at my side. You may be royal or a tramp, or anything in between, you are as I am. Nothing so special your shit pays your debts and nothing so miserably pathetic you deserve the shit that you get. We actually are in this together, it is about time we learnt how to actually do that in fairness, with compassion and respect for all human life.

Rant helped me get here as well as life, everything and everyone who has been in it, recent inspirations Bill Hicks, Abraham Hicks, Esther & Jerry Hicks...lots of Hicks here, Eddie Izzard, Jung, my lovely best so far muse with potential to develop seriously creatively, much other people's stories that are like mine in many ways, although not all those people have some of the tools i have such as meditation and counselling skills giving way to an ability to journal and self assess although possibly good to have qualified agreement sometimes...not always by certificate life can also be good for qualifying. Ramble end here...meditation time waiting!

7 November 2010 at 11:09 ·

Love or Fear?

I think many people feel things Very deeply pain, anger and fear are very pervasive, invasive and catching. Keeping our own balance is often not an easy task with just our own emotions to deal with but when we feel other peoples emotions as if they are our own it adds confusion. So grounding and keeping a strong boundary is essential especially when in crowded places. Letting go of what we have taken on board as ours often unknown. There are some very sensitive people who don't know this and some will naturally get it and others will be buffeted around until they start to learn how to deal with it. I guess some people have very strong and healthy boundaries from an early age, some learn how to have them and some never learn. 

I also guess it could be depending on what the soul wants the ego to play and how well the ego balances out with the soul once the call is made and heard...or something like that..



Love is also compelling. When the energy of love is stronger than the energy of fear then a feeling of bliss and inner peace ensues. 

At the moment there are many people in a state of fear. All around the world a way of life that has been problematic but relatively stable has been getting worse and worse, reminding people of history that are the worst moments in our humanity, that bring into question is mankind as kind as we thought it was. 

As I have gone through this year of different phases and back to worse health than ever again phases that has been far less awful since the nurse found me to be in a dreadful state with 20% lung function and seriously underweight and referred me for care through social services. Kindness and care has had a very positive effect on my health and after suffering two months of being very ill and very hungry, I am being given a better chance to recover enough to at least self care and who knows what else. Sometimes I fear sharing my optimism for a better future in case that is seen as grounds to take away all the help I am relying on to survive at the moment. 

I fall into that pit of fear too. I also jump out often and dance around metaphorically like a whirlwind of enthusiasm for one day having better well being and maybe ability to do things again. Some would call that naive and wishful thinking, atos would call it fit for work. I believe in miraculous remissions. I also know they don't happen for everyone who does...I have faced a possible death moment many times and each time I was filled with a sense of calm and almost bliss. There are many reasons why I have been more afraid of living than of dying. I often felt in the midst of my worst suffering (so far) a bit annoyed because it meant I was doing something wrong because we are taught in so many ways if we are suffering we have done something wrong, or not done something or there is something to blame, or even something outside of ourselves to blame. It can take weeks and months to work through some of it, especially where abuse and neglect  I've also felt fairly sure I can be better like all the other times once I have let go of something, worked on what I can for the moment and started loving my life despite the less appealing parts of it. 

It seems a bit like when we fall in love, if it is mutual and feels like a fairy tale for a few weeks or longer at first we may not notice the not so good bits in each other or life. If it is desperate and one sided there is a higher ratio of fear to work through. I learnt a lot of fear around loving and being rejected with seeds planted by siblings but given power by my psyche and once fed and watered with lots of manure my own and anyone else playing in the energy, that forms the feeling of the plot of the stories we play out together. When we are bursting with love we can do anything face anything, nauseate or uplift. When we are drowning in fear we can pull anyone who gets close enough down with us. It's all a balancing act between love and fear.

Stand strong in the power of love. It is all that is left when all fear is stripped away.

I'm tired and finding it hard to find the words now. They flowed so well for a few moments there. I have added a bit, I felt there was so much more to add but then there always is...smiles
Thursday 3rd October 2013 at 00.27
I ended up writing a blog as I responded to a post on a forum. I continued feeling the need to express what I am currently learning....and there is loads more. I wanted to respond to the one about dreams too...as my dreams are helping me unravel some of the symbolism as I see it in the story of my life and try to figure out a meaning of life....the meaning is different for all of us....don't you think?

Who Are Us & Them?

I've been listening, reading, thinking of previous understandings in current knowledge and there is talk of us and them, diversity, division, beingness, unity, we are all connected. There are a lot of flip sides in reality that we rarely get to see because we were not looking for it or expecting it to be possible. The truth of opposing views both being correct in part at least. The complexity we have made of simple things with suppressing our very being.

I wrote that a long time ago. There has been a lot more time to think, feel pain, and be honed by the need to survive to come back to peace. I read an article that ended with me feeling a need to shine my light

After watching Lakota Woman : Siege at Wounded Knee, with the words of John Trudell, David Hamilton, Carl Jung, Abraham Hicks, Spike Milligan, Dr Brian Cox, Monty Python, Bill Hicks, Bashar, and many many more having had an effect on the direction of the ideas of how things may really work in our reality...was forgetting Shakespeare, Eintstein, words attributed to Yeshua ben Joseph, and all the influences of art, myth, legend, history from as many different perspectives as possible and whatever influenced me to believe and break down into be lie f* that...I read this.

I have been severely ill most of the time for the last 3 weeks after not being that great and as bad but with help another 3 weeks before with a while of finding it tough but managing quite well with lots of love and good support, till I came to a bit of a full stop for July. The last few years there has hardly been a gap between one hugely stressful life event and another, so physical illness on top has been worse and another stressful life event all in one foul 'fit for work' sweep.

I was considering the world as it was experienced in Wounded Knee.

I had a huge unexpected emotional reaction as they walked into Wounded Knee to take possession, in fact it is coming up again now and I will allow the tears to flow. I have walked though those gates, in the year 2000, I won funds to travel and go self employed a while. I was 10 years old when the event took place. I know some stuff about it and some myth too we can only ever know part myth and part history about current reality as we perceive it. Some of our memories are altered as time goes on and radically new knowledge comes out about what was really going on unknown to us. The memory may be the same but the relevance will have changed and it can spin us into a downward spiral or upward depending on the closer truth we integrate into our understanding of our world and where we fit into it...

The division going on here with ill and disabled people being put through such hardship the death rate has increased dramatically and they now have decided to no longer hold figures about it. Propaganda has still kept many believing it is only the genuinely fit to work that are being targeted to lose benefits and have to go through a process that comes to a judge and doctor deciding if you can have nearly enough to live on back. Disability hate crime has soared. Enough of the problems for the moment.

I have been close to having to be hospitalised and having a day or two on oxygen and the typical arguments of not taking prednisoline as it harms me terribly. Knowing also that although it is very physical and there is allergy, damp, dust, mould and stress involved as well as hunger to not being capable of sufficient self care, the main thing is my ability to release tension and work out the energy of what is going on. It can be quite hard work! Sorry laughing, why am I sorry? In this reality comedy and near death experience without quite getting to the tunnel is probably a bit taboo. I still can't accept many of the rules for being ill and dare I say it with thoughts of suicide that get quite tempting and scare loved ones. Yet often after a time when it has been so bad I can't see the light at the end of the tunnel any more and am just about ready to give up...boom...I work my way sometimes painfully slowly through it and I become the light at the end of my tunnel and I can breathe...even if it gets tough again later...I think that is why I am not afraid of dying, cos I don't think I am finished yet and if I was I can shine my light all the time...till then I have work to do...

added a bit later after an little edit...that was a bit of a long winded this inspired me to wage light, just at the right moment as I had been working through some stuff...I love that last line...smiles and thank you  x

https://www.facebook.com/permalink.php?story_fbid=10151896387028140&id=96402508139&notif_t=notify_me


Where I am it was 03.38 Friday 23rd August 2013 when I posted this...

Dismal Facts of Claiming

Sunday 7^th July 2013 04.44

I probably ought to be in hospital, a place I fear due to past experience. I also fear applying for a 'change of circumstances' with DLA. When I applied for it I was not well enough to self care or walk around my house every day. I had been too ill to reapply at the beginning of 2008. I was eligible if fairly assessed, nothing much had changed since my last renewal, if anything I was struggling even more and had far less help. I was also too ill to inform WTC straight away, as I was still desperately trying to earn a living as self employed. I had started getting panic attacks alongside the physical illness, especially when dealing with the system to try and access help. It isn't a kind system when you are at your most vulnerable and it has got even worse. I sent my renewal pack back with a letter saying how I am not well enough to do this. It was very upsetting.

About November 2008 I realised I was not going to be able to get out selling my art & crafts again, at least for a while. I signed off WTC and signed on to ESA. I had an assessment, the doctor was nice, he treated me with dignity, respect and as if I were not a piece of dirt. I doubt he still works for Atos. He recognised I was doing my best and struggling simply to self care well enough to keep myself alive. I had to go to back to work interviews that I often cried through and the advisor was concerned for my well being. She advised me to apply for DLA again. I faced my fears and filled in the forms. Again I got told no. I appealed and while waiting for the tribunal wrote about a massive panic attack I had while out and how wrong the decision was. I had a reconsideration granted without tribunal for low mobility. I would probably have had high mobility reinstated if it had got to tribunal. I was too battered by the system to challenge it.

2010 I had a WCA. I was shocked and had a breakdown when I was declared fit for work with huge discrepancies in the data, things totally untrue and assumptions that because I was not rocking I didn't suffer from anxiety. CAB helped me and I won the tribunal in 2011. It had very much taken it's toll on me. I suffered more than when I was raped with the incessant thoughts about being wrongly declared fit for work and when I physically suffered and struggled more the thoughts made it feel even worse. I got a downstairs single bed as sleeping on the sofa was not doing me much good.

When the forms came through again 7 months later I asked for CAB to visit again and fill the forms in for me. I had transco out about gas fumes on 3^rd November 2011, they shut my heating off. 4^th November CAB lady came. I had to leave my front door unlocked as I was not well enough to answer the door. Early hours of 5^th November I had to have an ambulance. I was let out unable to self care 11.11.11 on warfarin, as they suspected a blood clot after I told them of the one I had in 1982. While I was in hospital I remember thinking and saying that if I was assessed in hospital they would ignore that fact and declare me fit for work. The weekly or twice weekly anticoagulant clinic was very stressful. I had to have hospital transport and a wheelchair in the hospital. Many times I felt so awful I would hide my face in my hands and cry.

05.34 Peak flow 140 using nebs. Writing this is affecting me but not writing it is also affecting me.

January 2012 I had to have the ambulance out and treat me while I sat on the toilet without the breath to wipe, flush and pull my pants up after going to the toilet. My son was there to help with the ambulance as November the ambulance crew had been very unpleasant to me, telling me I was just having a panic attack and would just be sent home. I had waited 6 hours for him to come back from an away game he had played at and had been desperate for the toilet in all that time. This crew were lovely and treated me with utmost respect and dignity in a very undignified situation. I was in about 5 days I think. I was able to stop the warfarin March 2012 after my lung specialist appointment and he said there was no evidence on the scan of a blood clot on my lungs back in November. Just in time for another ordeal not the system for a change, I was a witness in court about abuse. Having been raped and been subject to other abuses I see the system abuse as worse than rape.

I had found someone to go with me to my WCA appointment which was cancelled the day before. Then a new date 25^th May the day after my birthday, I couldn't find someone to go in with me. I was rung about changing times on my birthday. The whole thing was incredibly stressful and harmed my well being considerably. It has also made it so I often don't answer my phone again. 27^th June 12 I was in hospital again after another ambulance trip. 28^th June 12 the decision maker rang me apparently but getting no answer declared me fit for work and my ESA was stopped that day. 1^st July 12 I was sent home. 6^th July I got the letter telling me I was fit for work and my benefits had been stopped.

CAB did the appeal for me as I was worried it would push me back over the edge into another mental breakdown. Mind & CAB support were vital and I felt so lucky to have some people taking care of me, if not the system.

This time sick notes were more difficult and far more stressful to get, even when I was quite seriously ill with breathing difficulties one doctor distressed me so much with his attitude that I cried for hours, had to fight the urge to stab myself in the arm with a Stanley knife and when I finally fell asleep I woke up after 2 hours of sleep crying again. He gave me a month, which meant another appointment and more stress I saw him again as I needed to face my fear of him and tell him how it had made me feel. I went in my pyjamas in a taxi as I was too ill to get dressed. I was not able to go anywhere that didn't have a nebuliser at that point. I was very ill much of July, all of August, September, October and most of November, then became more moderately ill again, so less days where I may need an ambulance and possible death featured.
I attended pain clinic via hospital transport March 2013. That showed me I had already learnt very well to pace myself and assess how much I can do, which is often very little as it is at the moment.

I won my tribunal and was put in the support group in May 2013. The tribunal were surprised I was only on low mobility and so was the CAB lady. The doctor at my tribunal apologised for the distress I was put through. Shame it won't stop it from happening again under the current system. The lady from CAB advised me to put in a change of circumstances I said yes but when the forms arrived I couldn't look at them or ask for more help I was having a bit better health for a few weeks, not good health, just not quite so awful and I was afraid it would make me worse again. As it happens I have had a demand for overpayments from the WTC from when I was too ill to inform them of a change of circumstance and from when I stopped claiming they said they had already paid £300 for that time after I started ESA to the following April and even though I informed them straight away I have to pay back money from when I was on WTC. That arrived just before my birthday this year. I know the system is not fair or set up to support vulnerable people, it is there to fill us with fear and make our conditions worse through the stress. So although I am currently so very ill again I am scared to apply for a change of circumstances as I am scared to give you another chance to abuse me and treat me like a criminal and actually worse than an abuser gets treated, just for being ill.


06.39 Peak flow 140 too soon to use another neb, unable to lie down, too breathless. 

06.58 calming down a bit now while wondering if I should really post this and should I really send it to the DLA

But before that...being over familiar...maybe, boundaries are not always obvious...

Elaine Edwards shared George Takei's photo.

2 hours ago

Nobody seems to give a hoot that I'm a little different.

• Tim Kellogg likes this.
• 

  Elaine Edwards This made me smile...I wrote on it and hoped to give George a smile...
  I love your difference 
  Like · Reply · 52 minutes ago
  
  Elaine Edwards on good days you make me laugh on not so good days you help me smile...I appreciate that with all my heart in this moment on a difficult day
  
  Aaaaaand then I may have spoilt it but ahhh well after reading his interview and remembering watching telly as a kid...I always felt different as a kid. I often struggled to fit in, ialso experiencing fitting in with ease with the right people at the right time...and with myself when like today my body seems in strife...

  about an hour ago ·

Elaine Edwards shared a link via George Takei.

about an hour ago

Smiling as I read that. And feeling affection and probably being an annoying punctuation deviant, partly due to not being well at the moment...a rambler in normal circumstances exacerbated by feeling close to possible death, without worrying it may happen this time because when it finally does it'll be a good day to die...oops I didn't mean to tangent...I grew up with you on my telly we loved Star Trek night and the tradition of the new ones are gonna die...but the accepting differences was a subtlety I didn't get as a child and it may have helped me form into a person who accepts others for who they are not any labels that may apply to them, even then the labels I do like are funny, authentic, loving, generous, talented, unexpected, delightful. I like people who have those labels used about them often but difficult, annoying, stubborn, able to drive you up the wall etc tend to only be the ones closest to us who love us for that side of us as well and us them and I don't know why I am saying this but I feel good saying it. I may not be saying what I think I am though depending on how well I have managed to articulate my thoughts....now I could go off on more tangents so I will leave it there...I may be learning or it could be too late already ;)
This is usually the point I say sorry for being me and I think that is a habit I may be ready to give up :)

http://www.huffingtonpost.com/2013/06/29/george-takei-star-trek-gay_n_3512332.html

www.huffingtonpost.com

http://www.huffingtonpost.com/2013/06/29/george-takei-star-trek-gay_n_3512332.html?utm_hp_ref=gay-voices

Like ·  · Promote · Share

• 

  Elaine Edwards I may come over as a rambling crazy woman sometimes...I've learnt to love that about myself....I am willing to make myself look foolish to touch another persons soul....and hope they don't have me for inappropriate soul touching...I gave that up a few years ago but I don't mind the celebrity dream lovers visiting my astral planes or some such euphemism...mmm I do get interesting dreams...besides don't think the soul can touch inappropriately only the personality can do that because where the soul is not influenced by our stories, all is connected. Even the bad guys have no personality at that level and may not appear to have one but there is such a lot of fear of their own darkness in the way of them connecting to it...I reckon anyway and who knows who has got it right or close but I think most of us who are not sucked in by the darkness of harsh experience of deeper layers of fear....those of us who learn to love much more than fear...

  about an hour ago · Like · 1

  
  

  
  
  
  On sharing this...some conventions are made to change but resist it all the same...seems about right to me...the next chapter is all about us writing out scripts or whatever happens and working towards harmony and the time we stopped playing with all the negative energy which results in the idea that our differences make us enemies, it merely makes us different, it is hatred that makes us enemies....hatred and fear which is at the root of hatred of difference. How silly is that. All we have to do is start accepting we can all be nice and we can all be arse-holes (said in a very English posh accent to soften or maybe harshen the blow of the arse word, not the wind in the willings) and the more we treat each other with respect the more we tend to behave without having to force ourselves in a nice and loving manner, enjoying life with others around all supported and supportive. 
  
  We have had societies like that before and they were not boring like Demolition Man, was it? Sly gets to be an old fashioned cop in a weirdly innocent society. Or whatever films have planted seed of doubt that we can live in harmony, while also planting seeds of hope and overcoming all odds no matter how preposterous they seemed to be our psyche accepts norms it learns from fact or fiction, it isn't fussy, it can also learn a few things from advertising or the news and history written from a one sided angle, not everything we learn can be trusted as really really the truth...if you listen very carefully life will tell you what feels true and what has a question mark over it and it all has that at times but it is okay. Life is an adventure and fun can be had the same day life reminds you it can end.

  
  

GBE 2: Blog On WEEK #111 ~: NEW CHAPTER

I didn't really always know it but I have been writing my book for years in abstracts in my journals. Sort of. I need to look through all of them but that takes organising and things have been getting in the way of that again of late. Health was almost fabulous. I felt just quite stretched and only teetering towards overwhelm at manageable, just about, intervals. Which was a relief after it was so long a question of will I get better or will today end this, not for one minute feeling it to be my time yet, with things left to do, including learning better punctuation and word usage. Things hinted at in an altered state that caused me to vibrate and go very hot as well as say things about my future after speaking of danger that could have been avoided another accident after the first one hadn't worked to say time to move on from that job...

Of course I could just be a crazy nut job, which I have had the honour to be called on previous occasion by someone who would think it weird I may celebrate that fact but who cares, I am me and i have been learning to like me even when my own body lets me down and causes me great suffering which is uncomfortable in quite an extreme way. I wouldn't recommend not being able to breath well enough to function effectively as a hobby to anyone. It can also be very frightening if you are afraid you may die, especially if it is an agreed risk of you condition and you have previously seen the 'Oh Fuck I think she is going to die' look on loved ones faces. I find these things interesting, which probably proves without a shadow of a doubt I am totally fit for work. I can joke about that a bit more now, having won my tribunal and being currently supported as an ill person before the next round of assessments when the judges apology is spat on by atos when they declare me fit for work again. Not wanting to write my story that way so working on any fear attached to that as a possibility and considering if I need to learn that harshly again and who knows how we write our own destiny while fate brings us the perfect other actors of life to play the plot we co-create directly and indirectly.

I am wondering if this is the end of the last chapter of the last book, this life having many books to it, not just one like some of the other lives it feels like I remember in brief and the love we had shared, with whoever my soul rejoices or sometimes fear steps in and sometimes I was right to fear but needed to face the truth and other times fear was clouding a loving connection, sometimes just for a moment. I've been learning to trust myself. Or is this the beginning? A new chapter, is it a new book. I don't know I can't decide and in a way for now it could still hide. It keeps me linked to here and there, the work I do between. I went and did my thing, I grounded, jerked a bit, toned loud and clear sat inside me car wondering if anyone can hear me and kinda hoped they can't. It may come to nothing at all. The fear is less that may be the case. It really is a challenge but so was getting as far as I have come. I may be considered wise or crazy or a treasured bit of both, with stubborn and occasionally obnoxious and stepping on someones toes, not on purpose but just because I haven't managed to reach the perfection of me they think they would like to see.. I've nearly worked ot out for myself...or something like that...smiles


A little later.....

2 seconds ago

The Battle of the Dragons
I didn't understand your dragons
How could they be so different from mine
You have a very gentle soul
how could dragons seem to torture you sweet soul?
My dragons take me on merry flight and guard my house for me
Your dragons step upon your toes and sets you right on fire
Dragons too have yin and yang a game of energy
I feel it truth when I think of life as energy symbolised with words
With acts, and plays and scripts and plots we never seem to see
The Dreams are different see
even if at the time
they feel pretty much the same
do you ever think mid dream
oh don't worry this isn't a problem I am only dreaming?
Lainey 02.55 Monday 1st July 2013

Open Letter ~ Government People, Are You a Human Being?

So I am sat here thinking it's 09.27, I have been awake over 2 hours, eaten and for the moment I was thinking I felt actually not too bad at all. I considered I could go visit mum after all. There is no reflexology there today but I could go and mum would be really pleased because she hasn't seen me for a while, 2 weeks in fact. 

Then I was trying to remember when I had my last bath and wondering would I be able to have a bath AND go to see mum, maybe even a shower. It is nicer if I can be clean when I leave the house and I could put my new leisure trousers on. No not a shower, too cold, standing for that long, while not the problem it would have been a few weeks ago would be a push and I'm pretty sure the car will start, it's only been a week and 2 days since it was given a good charge. No a bath or shower would be pushing it. 

Come to think of it I could so lie back down and sleep. I am thinking of going to Mind tomorrow for the last meeting this year. The group and my Mind lady who picks me up and beings me home is special. I want to go. I have the rubbish to put out, the orange bag has been in the hall by the front door for quite a few weeks. Dave did it for me. It is rubbish night tonight. I can't get anything more into my dirty rubbish, the orange bag with tins and plastics, well most of them are loose between the bins and the new paper and card bag is quite full too. I can still leave them for another few weeks if necessary. The dirty bin is quite urgent. I've not been well enough to empty it for weeks and I didn't want that in the hall by my door as well. I think rubbish is a priority.

The level of my energy I am more confident I will be able to do my bins, or at least the dirty bin, if I take it easy today. If I feel able to tackle either or both of the other ones I will. I have got good at judging roughly how much an activity will cost me, although I am still liable to over-estimate my ability but usually when I have time to recover. I wasn't planning on being so ill so long over all of summer. As a normal person things get tougher if I get anxious about what it is I need to do. Having to basically go to court to ask for financial assistance to live is one of those things that can understandably cause anxiety. To have it implied that I may not be working hard enough or pushing myself hard enough by a doctor or the ridiculous notion I am actually well enough to work also has an effect on my anxiety levels.

I would love to be well enough to work. I would love to not have to jump through hoops that quite frankly are set too high for anyone to jump through who is not well to be treated with respect and dignity. A week today I face the new doctor again. I need to teach him that his friends in the DWP are not playing the game very fairly and that by getting him to view patients suffering severe illness as avoiding things by finding it hard to do appointments and finding life a bit difficult to deal with. He said I was being a bit negative when I said how gutted I was having another relapse after a tantalising glimpse of remission. Does he not understand that left me only feeling safe enough to get in that taxi because medical help would have been on standby should I get like I have been getting just walking to the toilet and back with emergency use of the nebuliser. I think I got more upset that last visit than I had actually cottoned on.

I wonder if hearing personal stories has an effect?
I wonder if the further away from the institutionalised decline in compassionate care of vulnerable people, the easier to ignore the suffering?
I wonder how the front line of the care givers cope with the new rules and policies they are being asked to follow? I see some struggle with it, it doesn't feel right but if they don't comply their job could be on the line.

I feel better having expressed that. I am also very in need of cwtching down under the duvet and letting go of the painful tensions in my body and ignoring the pain of lying down. Today I can breathe. I am capable of more than I have been used to being able to even consider without driving myself mad. I am not capable of doing everything I want and need to do. I'd prefer to already have done enough housework to be able to work and play with canvas and paint, to sell my crafts and enjoy interaction with other people without feeling dreadful or actually collapsing. I can't. I can however lose myself in a film and another chance to sleep and dream of being well enough to go off travelling and spending time with people I love.

Writing a public journal that is almost as shambolic as my life, does not mean I am fit to work, watching a film and staying awake doesn't mean I am fit for work. I am a human being. I am loved and I love people.

Tell me you government people, are you a human being too?