Here's a not so little poem thing I wrote...obviously from the point of view of someone who progressively became ill as that is what I know...
When You Live With Chronic Illness
Distress can be quite high
Not only are you grieving
For pieces of your life you lost
The hard work you enjoyed
Even work you forced yourself to do
When that was something you could manage
Not always easy but enough
Now you struggle to get food
Into the house and then prepared
You often have to choose
To eat or do anything else
It's not like you can do both
or the hundreds of other things
you would do as well
in the distant past
when your body didn't feel like hell
You adapt and survive
It can hurt to be alive
Each time your are treated as lazy
or mentally unable
to do the physical things to keep this life
Is a slap upon the face
a blow of epic proportions
Nothing of understanding
how this came to be
or that it is quite real
from strangers of the public
But worse the medical field
I can keep myself more positive
when I stay away from that
Having to explain just how severe
The low functioning body affects
Every single aspect of of the life I can now lead
I am not in control of my body
I am not in control of my mind
I am not in control of my soul
My objective is get back to my art
The creativity I have to share
To be able to work on a large scale
I'm not scared of hard work
If I could do it then I would
With support now I am finding in places
I can move faster to get to this goal
No support in the times of of inability
Slow my progress and challenge me more
The hurdles at times seem overwhelming
I have felt I can't go on any more
When suffering is terribly dreadful
Ignored by the ones who can help
The trust in anything from out side me
Is as shaky as trust in myself
To be able to live through those moments
The peace that is felt close to death
Knowing that when the end comes
It is a release of all suffering
No wonder sometimes that is enticing
But love and other reasons to live
Create my work, share moments of love
Joy and laughter
Learn to Live again
I don't need much for a little improvement
Pull the rug yet again
I will do my best to survive
After being a whirlwind of activity
I've had to painfully learn to go slow motion
Moving slowly respecting limits my body placed on me
Without too much interruption
From a system apparently punishing the sick
I can flow back into an ability to self care
At least enough to maintain
The precarious times of re-mission
Scary crashes relapse hardly managing
Basics needed to survive.
I am learning to not so fear them
Doesn't stop them hitting me hard
I've learnt that each moment is passing
Pain nor bliss lasts a lifetime it's mixed
All that I really am asking
Is support just to get through the blips
Never knowing how long they will be
Or when they will strike again
Bit of a long ramble after the medical history records
I knew it would be a hard read due to the way I have felt viewed...
I was very right at times, especially the doctor that scared me
I'm feeling quite serene
I am making peace with having been at times
treated like a piece of shit,
With hostility
indifferently
or other times
with dignity, compassion and care...
PeaceArtistLainey 14.14 Tuesday 10th December 2013.
Edited 15.00...I have edited this a bit...not my usual thing...usually I leave them as I wrote them even if I think after how to change it...it is a bit like sketching and making the picture from the ideas sketched down. I have only been able to sketch on occasion for so long too...I made it even longer!
I don't write to gain attention
I write because it is me expressing me
Any attention and interaction that attracts
Is valued from the heart
Even ones I didn't enjoy
The ones that hurt me deep
The ones that nourished parts of me
I couldn't reach myself
Thank you all those who share with me
In any way you do
I keep on falling in love with you
Even when you lead me astray
Being led astray means many things
Away from all I love or back to mend my heart
My life, my body, my soul
My soul was never hurt
Just loves to play it's part
It comes through with my art.
PeaceArtistLainey 16.33 Tuesday 10th December 2013.
Phew!
This I didn't edit just added the last line 2 minutes after I thought it was finished. That is the thing with art of any kind maybe, we can always twiddle and tweak it a bit more to make it refined and closer to the truth or image we wish to portray so most people will see it the way it is meant or the image being presented...tired now and stiff...time to rest my weary bones...and meditate on peace...unless monkey mind takes over and tries to take the pish...it's if I can laugh at it that lets me to let go...I have this annoying narrator...who can ruin or make the show....that's why I laugh at myself a lot....some don't expect that with chronic illness...but oddly as it sounds the ones who get my humour are the ones who understand and take me seriously as well...
Tuesday, 10 December 2013
Wednesday, 20 November 2013
Letter To My Doctor
Posted on facebook 04.01 Wednesday 20th November 2013...
Having just realised that my appointment with the doctor who knows me best in my surgery is Monday and I haven't got a clue what my level of expression will be as it so often varies from moment to moment. I wrote a letter to take. I may give it to him anyway. I may try and type it up...
Having just realised that my appointment with the doctor who knows me best in my surgery is Monday and I haven't got a clue what my level of expression will be as it so often varies from moment to moment. I wrote a letter to take. I may give it to him anyway. I may try and type it up...
03.19 Wednesday 20th November 2013.
The last time I saw you as a patient was before I went to the rheumatology & I tried to get an appointment again but was going through the aftermath of Nov '11 hospital admittance & warfarin, hospital transport, one or twice weekly clinic. I then was declared fit for work, while in hospital, end of June '12. I was very ill dealing with that & could never get an appointment with you when a note was required and didn't have the ability to deal with anything less urgent, not to do with surviving.
Last time I saw you in the practise was the day I had my spirometer test 17th September. I am starting to get a little better since then with care now coming in. I'm getting help from CAB with my DLA claim too, which has eased a lot of the trauma & anxiety that comes up when dealing with asking for help & being unable to do even enough to look after myself. I still feel I can be better but there are many little steps & stages I need to get through. Including making my house fit to live in. The work it needs having done is out of my reach at the moment. I have no help for it but maybe when I am able to deal with it I will find the help I need.
Last time I saw you in the practise was the day I had my spirometer test 17th September. I am starting to get a little better since then with care now coming in. I'm getting help from CAB with my DLA claim too, which has eased a lot of the trauma & anxiety that comes up when dealing with asking for help & being unable to do even enough to look after myself. I still feel I can be better but there are many little steps & stages I need to get through. Including making my house fit to live in. The work it needs having done is out of my reach at the moment. I have no help for it but maybe when I am able to deal with it I will find the help I need.
So far there is progress. I am choosing to trust it will continue at a pace I can keep progressing in. So far it seems to be doing that. I am slowly learning to trust the support being available to me, while knowing at any time the support can be taken away, no matter how much I need it. A decision someone else makes about me. When suffering it is not easy to make peace with the fact you have to rely on others for your basic needs. I have to curb my enthusiasm to do things without losing the will to carry on, with no end in sight.
15,56 Weds
15,56 Weds
After writing this I was tired but unable to sleep, I tried again to settle down at....I will just post my comments off my status about this letter...
05.36
need
longer lasting hot water bottle....
06.59
was
that only just over an hour ago....I was close to
sleep...ish...thinking about my major life events time line and
surprised myself at pretty major ones I missed till I backtracked.
things I once had bottled up and not faced till much later. I'd
got to 2nd move to Germany, while pregnant, leaving terminally
ill dad behind.
woah...Joey just went a bit agitated and
barked at me. Not sure if he heard the wind knock the door again,
it makes the letter box flap knock the door but I didn't hear
anything. It was an enemy at the door kind of bark. He has finally
settled in the few minutes taken to type this...
been back
at bed just over 10 mins and started typing this that long
ago....got hot water bottle and sorted maybe sleep will come when I
settle back down...
07.01
just
had to show him there is no-one at front door....
07.27
he
probably wouldn't have barked if I had been asleep....or I may not
have heard him....I can sleep with him barking...I've even fallen
asleep while he barks...weird sleep isn't it? It can be so easy and
unavoidable or so elusive and unobtainable....like the stuff they
mine a paradise for in Avatar....
07.28
unobtanium
sleep...no wonder they wanted to market it...
13.00
Oh
god....horrible wake up with stranger again when expecting known
carer....wasn't nice Joey barked she had little patience, I felt
like I may pass out, felt sick...had to get out of bned
13.01
bed...she
was getting cross at Joey barking as she tried to get out the
door...I locked door and screamed for about 5 minutes.....I'm
calming down a bit now
Joey
having a premonition was suggested I think he did know something
was going to happen today
funny
thing is I nearly locked door again
(when Joey barked before sleep)
13.16
I
think he did...poor thing been hiding under the bed...I need a
coffee now...feel shit have rung office in a right state asked them
never to send a stranger again...just been to loo & made
one...still keep bursting into a kind of wail
15.49
I'm
much calmer now. I have been talking it through with my mom and a
friend who knows me well and has helped in my self healing with
energy and words, she is an amazing healer and I have managed to
put it into perspective of the energy play more than the actual
details, which is a sort of detachment but at the same time not in
a closed down completely detach from reality way, which I have done
before. It shocked me and was an uncontrollable reaction in my
reality. I had just written a letter to my doctor saying I was
learning to trust the system and know it could let me down at any
time....going to finish typing that up....I was also wondering if
after this jump start of my adrenals again if I run the engine
properly will it help my adrenals work more appropriately?
I
am going to try and eat the banana by my side in a minute....and
keep grounding, grounding, grounding. Phew, it has been intense!
16.11 Of
course it doesn't help that I am at most fragile and volatile point
of my hormonal cycle right now as my period is starting...need to
eat that banana!
16.23 it's
quite a trip...so much energy working through to a healing point
for me, which is not comfortable much but powerful...smiles x
Thursday, 31 October 2013
WEEK #128 (10-27-13 to 11-2-13): ONLY THE ENDING
This is the end, the only end my friend...
I probably shouldn't announce it singing the words and resisting singing low, 'This is the eeeeeen-nd.'
Murdering The Doors song, not being the worst thing that can happen. We often don't know the end is approaching in life because it isn't the end of a book with the obvious lack of another wadge of pages. Everything gets tied up neatly and the plot has a good feeling of completion, unless there is a new beginning to hint at for the next book to carry on from.
Murdering The Doors song, not being the worst thing that can happen. We often don't know the end is approaching in life because it isn't the end of a book with the obvious lack of another wadge of pages. Everything gets tied up neatly and the plot has a good feeling of completion, unless there is a new beginning to hint at for the next book to carry on from.
There are no real endings though, even death isn't an end. I have already talked about 'ol Grim. His story of the beginning. I have even published a picture of him when his story was born near the early chapters before going back to backfill the story which may happen next a bit more but not in this instance. As a narrator I know I have done a botch job and gone off on too many tangents. I don't think I introduced myself but I am sure you guessed I am her soul, the bit that is more in tune with creation itself.
There may even be another book because her story is so not over yet, we are however at the end of this particular book of it. Live or die her new phase of the story begins. She's ready to face the world, she understands the nature of fear, she accepts it may trick her again, she has learnt to love and forgive her imperfection of this incarnation and all that went before. The stories and games played out in experience stored in the files of the memories that make this life what it is. The feelings and emotions that she held onto past their let go date and the ones she let go more quickly as she learnt. But don't take my word for it. If she has come to your attention, ask your soul to tell you why.
22.36 31st October, 2013
I haven't yet typed it up but one day I may share the beginning that was written after the Grim Reaper picture was shared on fb and my friend asked to be named Nigel...so with the tune playing, We're only making plans for Nigel...'
I haven't yet typed it up but one day I may share the beginning that was written after the Grim Reaper picture was shared on fb and my friend asked to be named Nigel...so with the tune playing, We're only making plans for Nigel...'
Wednesday, 23 October 2013
A Clarity Moment With A Long Explanation!
Wednesday
23rd October 2013
Anyway the point started out with the clarity that came while I was in the act of omphaloskepsis whilst having yet another stinky poo since coming home. It may not have been necessary to take the antibiotics but maybe just taking that one causing a thorough purge of my gut wasn't such a bad thing. I don't know. I do wish that they would treat us holistically and help us appropriately as individuals. Talk us through the results of our blood tests properly and what foods would be best for us to eat, suited to our tastes and proportions for maximum chance of well being. We all respond differently to treatment and stress affects us all in various ways. I am sure I would be healthier in an environment that is dust and mould free, with support to get better. Little by little it has been coming to me as I work through all my fears.
My dreams have been another tangent of my recent story. It seemed so clear as I sat there I need to write my story. I know it will be cathartic and I don't know if it needs to be a novel. There are things that are not mine to share, but I can share all that is just mine and some of the snippets of where my dreams, visions and inspired writing. I don't know, but I do know how it feels when the muse flows through me, I have no other choice but write or type or record what feels the need to be shared or simply aired for my own eyes or those who get to see my journals for whatever reason with or without my blessing. Even writing a private journal is a risk I keep choosing to take. I have a bookcase full when I finally gather them all together.
http://en.wikipedia.org/wiki/Omphaloskepsis one of my favourite words...smiles
I
was just sat contemplating my navel (excuse me but I am too honest
for my own good I am told) on the loo having a painful experience,
breathing better than it has been all day. I was thinking about the
past few days, the long run up of being so ill I was sat in the
kitchen crying and shouting please help me, God please help me. I'd
been making a bacon sandwich and scalding myself while making my
flasks for by the bed. I don't usually ask for gods help that way, I
am not one to pray that way. I felt better than I had for weeks that
night in hospital after oxygen and lots of kindness shown to me and a
hug from my daughter before the ambulance.
I
had the usual argument with the doc who had the say so in whether I
was admitted or not about steroids and what I have learnt about them,
what I have also heard about increased risks of brittle bones and
glaucoma. How they affected my immune system and how they gave me
severe cystic acne, which has to be seen to be understood. I looked
like a burns victim, I showed the pictures in hospital and to the
carer Monday. The doctor wearing the black uniform took a really
detailed history, which is a long story and contains much added
stress from the way I have missed out on care and been mistreated by
the benefits system.
She
was lovely called me sausage quite a lot and said at one point about
how I know my body best. That was so wonderful to hear, to be treated
with care, respect and dignity. She kept saying sorry sausage as she
had a few goes at getting the arterial blood sample. She only got a
bit and it was looking like I would get the right wrist done as well,
which I was already having the weak wrist pain in and had forgotten
my wrist brace. The nurse hadn't been able to get a cannula in either
and had a really difficult job getting blood out of me. She did say
at one point as I went to eat the overripe banana I had, that I had
high potassium levels in my bloods.
I
cried at one point because I am not always used to being treated with
kindness in the health system either. Apparently diagnosis of CFS and
mental health issues can have that effect, some dismiss us as needing
to pull our socks up or something. The worst thing about that is
sometimes pulling my socks up is actually too much effort for me to
be able to safely do it. Oxygen and being treated kindly both had a
beneficial effect on me and I was feeling better than I had for
weeks. My peak flow before going in had been 90, after coming out it
was 200. Oddly for the first time ever I wasn't asked to do one the
whole time I was in there.
I
was put in the ACDU and the doctor really went to town on selling me
the need to take the antibiotics. I asked if it was a viral or
bacterial infection. He looked at me with almost a look of alarm and
confusion. Then told me about how he has seen other people with
bronchiectisis (sp? I really will have to learn my new label!) get
breathless just moving their heads. I have been that bad. He talked
of the damage being done to my lungs. I reluctantly gave in and took
the antibiotic after an hour or so deliberating it. Knowing the
balance between the damage antibiotics do in the short term awful ibs
and the long term further reduce the bodies capacity to fight
infection alone and best kept for times it is the last option. I knew
really in this instance it wasn't that drastic.
In
the morning, when the consultant told me that I was at the tail
end of the infection and my body had fought it off, it was like music
to my ears. He said it wasn't really going to make a difference in
recovery time if I took the antibiotics so it was up to me. I decided
against it and rather kicked myself for being pressured the night
before but forgave myself at the same time. I was so much better and
sent home, which felt good. I had felt safe and had been supported,
empowered by the experience. Of course I find my own empowerment, it
seems it was reflected back to me. The more I experiment with the
idea of feeling safe equalling being safe and listening to my body
and soul, the more I find it playing out in my life. It is often a
challenge to feeling safe when conditions of your body can mean you
feel closer to death than safe. In a way I suppose the fact that I am
pretty sure I have a new adventure waiting when I do leave this body
and its earthly bounds, means I am less afraid of dying than living
in pain. I would like to live though. I think I have stuff to do. I
would love to live with at least manageable pain and far
less need for help from others to have a quality of life. I am
willing to live with that if it is the only way I can.
Anyway the point started out with the clarity that came while I was in the act of omphaloskepsis whilst having yet another stinky poo since coming home. It may not have been necessary to take the antibiotics but maybe just taking that one causing a thorough purge of my gut wasn't such a bad thing. I don't know. I do wish that they would treat us holistically and help us appropriately as individuals. Talk us through the results of our blood tests properly and what foods would be best for us to eat, suited to our tastes and proportions for maximum chance of well being. We all respond differently to treatment and stress affects us all in various ways. I am sure I would be healthier in an environment that is dust and mould free, with support to get better. Little by little it has been coming to me as I work through all my fears.
My dreams have been another tangent of my recent story. It seemed so clear as I sat there I need to write my story. I know it will be cathartic and I don't know if it needs to be a novel. There are things that are not mine to share, but I can share all that is just mine and some of the snippets of where my dreams, visions and inspired writing. I don't know, but I do know how it feels when the muse flows through me, I have no other choice but write or type or record what feels the need to be shared or simply aired for my own eyes or those who get to see my journals for whatever reason with or without my blessing. Even writing a private journal is a risk I keep choosing to take. I have a bookcase full when I finally gather them all together.
23.45
Wednesday 23rd October 2013
What led me to write the blog... someone asked if anyone had managed to come off prednisolone* and about DLA...I used to get high rate DLA but when I renewed 2008 I only got low rate...I was not coping well with the fight for benefits at the time and didn't fight it. I refuse prednisilone as it caused major cystic acne in 2004 that was so bad someone I know who was training as a nurse was worried I would get septicaemia. It also affected my moods badly and I am sure it was a major contribution to my immune system going on holiday and refusing to come home!
I did agree to them last year after a lot of pressure from doctors in the hospital when I was admitted last June. I had a different response mood wise because I have worked through a lot of my fears and pain from past abuse etc and as it was a positive experience being in hospital and I had an audience who enjoyed my upbeat mood. I came out of hospital in a state of mania.
One of the things I noticed with different courses of treatment was that my emotions were the leading erm oh god can't think of the word...well underlies all the problems. If I feel unsafe and unsupported my symptoms get worse and when I feel safe I can have what appear to be miraculous remissions...if I am feeling emotionally low and upset my allergies are more easily triggered and if I am feeling loved and secure I can even cope with someone wearing perfume in the same room...
this is the rest of what I shared there...I wanted counselling but was not given it as it is not available from my surgery. I did have 2 years of it after being raped in 1994 and later starting an art college course, which was a therapy in its own right, exploring my creativity. The counselling was (free) at college...I am editing as I didn't make that clear. I had my first course of pred at the start of the art course but I am half sure the combination of counselling and art and the opening up of my life kept me back to staying a mild to moderate asthmatic. I went on to do my BA in art and trained in various healing techniques including Reiki. Then a year of post grad cert of education to teach in colleges but I wasn't keen on the politics and didn't finish that. I went on to do some counselling skills courses, which encouraged journalling which I continued to do after as my life fell apart around me and my health deteriorated along side, each affecting the other as such.
An allergic reaction to hair bleach in 2003, high dose of pred and then lowered immunity is what led to an unfortunate series of events that I have still not managed to get over enough to have stable health yet...partly due alos to the benefit system keep declaring me fit for work when I am not even fit to self care...
good luck hon...I hope you can find the best way forward for you to find your best well being that you can find...
What led me to write the blog... someone asked if anyone had managed to come off prednisolone* and about DLA...I used to get high rate DLA but when I renewed 2008 I only got low rate...I was not coping well with the fight for benefits at the time and didn't fight it. I refuse prednisilone as it caused major cystic acne in 2004 that was so bad someone I know who was training as a nurse was worried I would get septicaemia. It also affected my moods badly and I am sure it was a major contribution to my immune system going on holiday and refusing to come home!
I did agree to them last year after a lot of pressure from doctors in the hospital when I was admitted last June. I had a different response mood wise because I have worked through a lot of my fears and pain from past abuse etc and as it was a positive experience being in hospital and I had an audience who enjoyed my upbeat mood. I came out of hospital in a state of mania.
One of the things I noticed with different courses of treatment was that my emotions were the leading erm oh god can't think of the word...well underlies all the problems. If I feel unsafe and unsupported my symptoms get worse and when I feel safe I can have what appear to be miraculous remissions...if I am feeling emotionally low and upset my allergies are more easily triggered and if I am feeling loved and secure I can even cope with someone wearing perfume in the same room...
this is the rest of what I shared there...I wanted counselling but was not given it as it is not available from my surgery. I did have 2 years of it after being raped in 1994 and later starting an art college course, which was a therapy in its own right, exploring my creativity. The counselling was (free) at college...I am editing as I didn't make that clear. I had my first course of pred at the start of the art course but I am half sure the combination of counselling and art and the opening up of my life kept me back to staying a mild to moderate asthmatic. I went on to do my BA in art and trained in various healing techniques including Reiki. Then a year of post grad cert of education to teach in colleges but I wasn't keen on the politics and didn't finish that. I went on to do some counselling skills courses, which encouraged journalling which I continued to do after as my life fell apart around me and my health deteriorated along side, each affecting the other as such.
An allergic reaction to hair bleach in 2003, high dose of pred and then lowered immunity is what led to an unfortunate series of events that I have still not managed to get over enough to have stable health yet...partly due alos to the benefit system keep declaring me fit for work when I am not even fit to self care...
good luck hon...I hope you can find the best way forward for you to find your best well being that you can find...
*I
love that they are known as 'devils tic tacs' they do help in some
instances but for me they lead to even worse health to follow....this
bit I added when I added this to the end of the blog for those who
don't know the background to my life story.
http://en.wikipedia.org/wiki/Omphaloskepsis one of my favourite words...smiles
Saturday, 19 October 2013
Pain Passing Through
thank
gawd it was the carer who is good with Joey and not scared of him
when he barks...he was showing signs of distress and that he knows I
could end up in hospital as he wouldn't leave me to go outside. I
cried to her today...stayed on the bed and she made me a bacon
sandwich, coffee and two flasks. If I'd had to get up and put Joey in
the back door/bathroom area...well today I couldn't have done it and
not got very ill...I have got another one visiting with the one who
is scared of Joey on Wednesday and I will be able to go through my
needs etc with her then. If I am still this bad hopefully she will be
able to put Joey into the other room, although that could be a
problem...he does look mean when really he is only distressed and
signalling his protection of me...
I
am in need of sharing at the moment the feelings as they pass through
me...by sharing them I can release them...we are often stopped from
doing this as it is not being stoic and positive if we share the
painful feelings we are experiencing. So many ways of thinking that
prevent us from processing things, including grief and pain and
anger...all things that fear controls in a major way. Love may be the
bliss we feel when we forget fear for a moment of longer...
Just wrote on text...
Crying so much. Big clearing going on feeling lonely but not lonely. In need of help to find comfort as well as for practical things I can't do. Desperate & at peace. Not sure what to do with Joey if I end up in hospital, which I may not need due to care coming in or sort of because of it. Phew! Powerful energies going on xXx
How are you doing with it? xXx
Just wrote on text...
Crying so much. Big clearing going on feeling lonely but not lonely. In need of help to find comfort as well as for practical things I can't do. Desperate & at peace. Not sure what to do with Joey if I end up in hospital, which I may not need due to care coming in or sort of because of it. Phew! Powerful energies going on xXx
How are you doing with it? xXx
For
the first time I welcome this pain, I am thankful for the clearing,
it's painful but the end results are more releases, this is one step
closer to better days. It was through sharing I found this less
antagonistic struggle routine I go through each time breathing
gets so difficult. Of course I want to fight for my breath and not
feel this pain. It is there for a reason and I need to surrender to
it to not make it more painful than it needs be by tension and the
added fatigue of being unable to move about, relax or sleep but to be
so exhausted I have fallen asleep sat up for moments in that state.
Physical pain can be easier to identify than emotional pain but they
are both the same thing and both cause more of the same in each
other....
at
the moment I am maintaining calm acceptance, coughing and spluttering
a little less, still wheezing a loud tune. I am not all scrunched up
as I tend to have to keep checking and letting go of in this phase of
the decrease in ability to breathe effectively with worse moments as
the mucus totally plugs the airways in moments that could induce
absolute terror if I hadn't got used to it. I do get concerned at
times because I know I push the limits but due to having similar
coping home alone as in hospital when they refuse to give me oxygen
without checking my stats when I am too breathless to eat and finding
the battle with anxiety a bit of a losing one...but I have never lost
the battle and it has been close far too many times for me to feel
scared by it often and only then because I feel I have a job left to
do and I don't want to leave my children...
My dad didn't want to leave his children either, so I know I could be wrong about having more life to live yet and not in as bad a way as I am at the moment. I have had worse days and have had better days again. I usually feel confident I can find them again, even if there is a huge challenge with lots of obstacles in my way to get through to prove I did have more to live for....although I don't need to prove it the same as I used to feel about things. If I have got it wrong I am at peace with that. I feel my life will only end when I have done what I am here to complete as the living embodiment of the personality and flesh called Elaine.
Just making peace with where I am in relation to my feelings and experience of being held back by inability to do things that could enhance my life, forgiving myself for not being fit for work, rest and play. Forgiving others for their own inabilities, we all have them and so serve both ourselves and each other less well than we may like or not much think about if we can cut things out of our thoughts, which of course we can't if we need to resolve them. We all hold on to our pain longer than we would need to if we had a healthy way to process it and while not depending on others to act in ways that please us for us to find the healthy balance.
Balance is easier to find in healthy settings. When it is being soothed back to balance the dance becomes more the last tango in shit stream without a paddle for a while more than the cha cha but always recovers back to the cha cha....embraced with enthusiasm or met with sulks and stubborn resistance the flip side of the stubborn person who keeps going through thick and thin to find love and joy again....we may also hold on to how unfair it is a bit longer than some people would and try to will our way through something quicker than we are capable of getting through it....we can be a bit impatient, with the patience of a saint....
My dad didn't want to leave his children either, so I know I could be wrong about having more life to live yet and not in as bad a way as I am at the moment. I have had worse days and have had better days again. I usually feel confident I can find them again, even if there is a huge challenge with lots of obstacles in my way to get through to prove I did have more to live for....although I don't need to prove it the same as I used to feel about things. If I have got it wrong I am at peace with that. I feel my life will only end when I have done what I am here to complete as the living embodiment of the personality and flesh called Elaine.
Just making peace with where I am in relation to my feelings and experience of being held back by inability to do things that could enhance my life, forgiving myself for not being fit for work, rest and play. Forgiving others for their own inabilities, we all have them and so serve both ourselves and each other less well than we may like or not much think about if we can cut things out of our thoughts, which of course we can't if we need to resolve them. We all hold on to our pain longer than we would need to if we had a healthy way to process it and while not depending on others to act in ways that please us for us to find the healthy balance.
Balance is easier to find in healthy settings. When it is being soothed back to balance the dance becomes more the last tango in shit stream without a paddle for a while more than the cha cha but always recovers back to the cha cha....embraced with enthusiasm or met with sulks and stubborn resistance the flip side of the stubborn person who keeps going through thick and thin to find love and joy again....we may also hold on to how unfair it is a bit longer than some people would and try to will our way through something quicker than we are capable of getting through it....we can be a bit impatient, with the patience of a saint....
17.17 (GMT) Saturday 19th October 2013
Sunday 01.56 ~ 03.25 There's
more...
Sometimes I go into meditation to release a build up of pain, which can happen very quickly and in the usual way in how I work and process the feelings things have brought up for me. I have never been able to do a mainstream meditation from the world of meditation. For me it can happen in an instant or can evade me without the prompt of special music or guided meditations. I have done at times meditation intensives then forgotten even to ground and hardly going into that space between perspectives, even for daydreaming.
It looks to most people like I am mainly wasting time or at least frivolously frittering it, which makes some people a bit jealous of me being able to do that. I wouldn't have the opportunity and necessity of being the way I deal with being ill, if it were not for being quite dreadfully ill, in a way that most people would wail and stay more upset about than I do. Not that I would blame them, it isn't easy being ill in a way that could mean game over at any point. It isn't easy for people who love me to deal with either. Indeed some walk away, some come back and quite a few do the cha cha...or maybe the Oacky Koky, however do you spell that?
I
do not think I am any worse or better than anyone else in the
deserving stakes. Just because I may at present be considerably more
ill than someone else in the support group, who can still do some of
the things I would love to do and can't at the moment, doesn't mean I
deserve to be looked after any more or less than them if they need
support, they need support. I have friends who are better and worse
than me in symptom collections. Honestly we don't collect them for
the hell of it, although it can feel like we are in hell the more we
collect. They just seem to come together in buy one get two free
deals.
That can be made worse by the medications we have to take care of the medication that is saving your life while giving you more likelihood of getting a worse symptom that will debilitate you for longer and take more groups of medications. This is why I try to use different meditations, they help the release of toxins and medications tend to build up toxins and symptoms of toxic overload in the body. It can be fair to say that after some pretty bad reactions to some of the medication I have been given, I avoid it as much as I can. Even using nebs and ventolin inhalers is something I want to one day be able to give up. I may not be able to but I've had days where I haven't had to excessively limit activity and haven't needed to even use an inhaler, not many in the last couple of years but there had been a highly stressful chain of events that few know the half of it.
That can be made worse by the medications we have to take care of the medication that is saving your life while giving you more likelihood of getting a worse symptom that will debilitate you for longer and take more groups of medications. This is why I try to use different meditations, they help the release of toxins and medications tend to build up toxins and symptoms of toxic overload in the body. It can be fair to say that after some pretty bad reactions to some of the medication I have been given, I avoid it as much as I can. Even using nebs and ventolin inhalers is something I want to one day be able to give up. I may not be able to but I've had days where I haven't had to excessively limit activity and haven't needed to even use an inhaler, not many in the last couple of years but there had been a highly stressful chain of events that few know the half of it.
In
that time I have against some odds not only stayed alive but had
moments of feeling totally at peace, happy and unconcerned how much
longer this difficult phase lasts for. Just thinking of a time when I
was sat in the not so comfy, comfy chair, the heating was off because
I was waiting for new gas heating and the old one had been condemned,
so I had an electric heater on and many clothes. I had done the
painful injection for the day, been to the clinic via hospital
transport, you may or may not know the joy and horror of that beggars
can't be choosers help that we are grateful of while wondering if we
will survive another 3-4 hours in hospital waiting for the
appointment time and lift home.
Always
a surprise if it would be a get there in time for appointment or not.
It is amazing because without it I would have been somewhat in
trouble, clinic once or twice a week on warfarin and unable to keep
my clotting levels right even when I remembered every dose, crying
when I was feeling totally awful, as opposed to just dreadful. They
often mainly ignored my crying! Which suited me yet also disturbed
me! My least favourite days were when I found out I had to inject
myself with heparin or a substitute type that stings worse. I had
lost a lot of weight then too which meant I had more chance to the
injection hurting. It wasn't a lasting pain but still hard to self
inflict, I am not a fan of pain. I've just had to learn how to
embrace it and relax into it. I have also learnt that we can get used
to so many horrendous conditions felt within our bodies, minds and in
our surroundings and still allow the appreciation of what we do have
to celebrate.
At
the moment I first started to describe, I was lost in an Avalon book,
identifying with the characters, it was the one based around the life
of Boudica. I was in my own home, sort of comfy, I'd just eaten
something, I think. I would have to check my journal through the end
ish of the 4 months I was attending anticoagulant clinic. I had
coffee and my own space and would be able to stay home alone the next
few days. I looked up at my shabby surroundings and realised I could
have not been happier in that moment if I had been lounging in a
comfy hotel room in Turkey. Although that appealed quite a lot and my
health does improve when I am there or has done the 3 times I went, I
was still just happy to be in my own space, in good enough comfort,
getting lost back into stories that entertained me and made me think
about if concepts the characters held as true, is true, what does
that mean? I think there is a strong chance many aspects of many
theories are close to the truth. It seems to me to be a case of
untangling the web of lies woven within the truth...
This is why I loved Joan of Arcadia, Heroes, Medium etc on telly and the Avalon books too. They explored concepts in ways that made me think deeper again and heal deeper again. Oh just in case I haven't already made you run for the hills, I was going to share what I experienced in the meditation to release the intense back pain that came up while dealing with another bit of difficulty breathing. I closed my eyes and I could see fragments of massacre scenes, ancient, through history and far too recent. For a moment I felt like I was being ripped apart. Then I felt like I was being the killer and the killed all mixed into pain that contorted my face as I sobbed for both sides of the horror. I used to hate horror films, I still avoid blood and gore films if I can. I have always had enough scary stuff that nightmares used to terrify me with. It wasn't until I started to face me biggest fears that I learnt in dreams to say no to fearing monster types looking evil ugly. Charmed, Buffy and things like that helped too. I learnt more from fiction to face my fears than I learned in some workshops.
This is why I loved Joan of Arcadia, Heroes, Medium etc on telly and the Avalon books too. They explored concepts in ways that made me think deeper again and heal deeper again. Oh just in case I haven't already made you run for the hills, I was going to share what I experienced in the meditation to release the intense back pain that came up while dealing with another bit of difficulty breathing. I closed my eyes and I could see fragments of massacre scenes, ancient, through history and far too recent. For a moment I felt like I was being ripped apart. Then I felt like I was being the killer and the killed all mixed into pain that contorted my face as I sobbed for both sides of the horror. I used to hate horror films, I still avoid blood and gore films if I can. I have always had enough scary stuff that nightmares used to terrify me with. It wasn't until I started to face me biggest fears that I learnt in dreams to say no to fearing monster types looking evil ugly. Charmed, Buffy and things like that helped too. I learnt more from fiction to face my fears than I learned in some workshops.
Wednesday, 16 October 2013
Just When You Thought It Was Safe
energy bringing conflict
judgement
fear
insecurity
still catching by surprise
old fear buttons
pressed
again & again
truth is subjective
patterns re-presented
ego & soul
running the show
in tandem pedalling
not always equally
teacher & student
learning humility
humanity divinity
unity division
smoke & mirrors
you am I & I am you
and all things in between...
07.07 Wednesday 16th October 2013
be calm spread love ;)
Surprisingly enjoyable light-heartedness...lucky iplayer find a bit fabulous ~ he's yummy & too young but sue me!
Atlantis 1. The Earth Bull ~ Jason washes up on the shores of a strange and mysterious land:
Nice swift emotion processing...being in now...no current challenges to peace...appreciating this
I am working out more how distraction is needed at times...how it can help us work through our processes by taking a time out...I am still recovering from a non bath bath....I was not able to wash myself but I was able to sit in it and even sit back for a few moments a couple of times....things were going round my head about why certain buttons cause me to react in certain ways...
On a lighter note this was just so English, British...yes we have collective kinds of ways of being that has many subcultures among the masses of individuals that we recognise and feel at home with some and not so much with others. I am of the female gender that puts me in a group. I was born in England, that puts me in a group. I live in Wales that puts me in a group. I am an artist....and so on and so on. I don't get on with all females or all artists, that is okay. I don't attack other females for being a different expression of female than me. I would call a female up for being cruel if she ridiculed another female for being female in a different way or if she did it to me when I pointed it out as unkind.
This has slipped into the energy of what has been the drama in my life the last couple of days. By my life standard of drama it is insignificant in many ways but a major thing as well. In my process of working through it in a group situation, I was told to let it go before I was ready. While I was fresh from being mocked again. Something that hits buttons put there in my childhood. So yes of value but not an excuse for unkindness.
I see the system that I depend on for my living needs as very unkind in many places. I also appreciate it as I would not be able to live and survive without its grudgingly given subsistence. To shout out about it being unfair is something we are often admonished for by those who don't understand what it is to have to rely on a corrupt system. That may be a tangent too far but it is all a similar energy of control.
I had so many thoughts going round my head in the bath....being useful as a trigger to look even deeper does not excuse stubborn denial that the other did anything wrong at all, being obviously hurtful to many people all trying to be more heart centred and saying sorry for being sensitive and unable to deal with less kind energy.
I have also thought a lot about the fact I know I haven't got all the answers and I am doing the best I can with what I have at the moment on an energy level and the physical. I am a human as well as a being and sometimes react more from my human than my being and also the other way round.
Conflict only happens where there is at least two willing people to engage with it. If conflict is to be resolved fully then both have to see their role that leads to the play of battle of words and energy. To dismiss one sides part which could be seen as fault to blame them with is damaging as holding the blame aspect of conflict. It probably goes a long way to that being played out in so many creative ways we choose to. Projection is a funny one as well as often one 'side' will see the other side as projecting and themselves not doing so. This is a problem leading often in my experience to the one who uses the most deflection in the mirror of the interaction using it as evidence that they are always right and the other one is wrong. Hmm where does that leave either side? Both having won & both having lost maybe?
This is a work in progress as I unravel more. While I sat in the bath soaking in the epsom salts and still thinking I may be able to wash my hair and my body the thoughts came thick and fast. Memories of the very unkind ways of arguing and belittling to keep me subdued as a child by a sibling I could never please as it wasn't possible to change into a boy so I could be his brother and not this annoying little sister. If I had been Robert the little brother he would have liked and with the personality of me, I doubt it would have much changed the dynamics. I would have still been younger and still unable to deal with that style of arguing which was displayed so strongly by another the other day.
Considered superior intelligence and picking every thing said and done to shreds and as evidence of my 'wrongness' and their 'rightness' is something that can bring me right back to that child who felt despondent and despairing of having a place in the world. As I realised I had worth no matter how any one else saw me it still got to me but in a different way. It is not fair. It is not kind. I don't like the energy. I watch out for my shadow self that may feel a bit superior at times. That old adage of 'don't sink to their level, you are better than them,' is unkind in its own way. I am not better than them, I may be behaving slightly better but that does not mean I am better. I get my knickers in a twist when they think they are better than me when they are not, no-one is. They often act as if they are while displaying very bad behaviour. There is a part of me that forgives that but also wants them to learn to be kind and they are not always ready for that.
I wrote the poem directly after an engagement of conflict energy. I tried to set the time to GMT but it will only stay at Pacific Daylight Time. I ended up setting it to post at that time I am presuming 8 hours later...I added this bit between the hours of 17.33 and 19.19 Thursday 17th October 2013
All of this has been shared on my facebook wall too but I decided to keep it more easily found by making it a blog...
ps. I was taught to be sarcastic and fight back with stinging words. I did for a while and can be very good at it, a cutting, off the cuff statement is very easy for me to deliver. I have done a lot of work on myself to not do that so much because I can be very unkind and being unkind is something I don't want to be.
judgement
fear
insecurity
still catching by surprise
old fear buttons
pressed
again & again
truth is subjective
patterns re-presented
ego & soul
running the show
in tandem pedalling
not always equally
teacher & student
learning humility
humanity divinity
unity division
smoke & mirrors
you am I & I am you
and all things in between...
07.07 Wednesday 16th October 2013
be calm spread love ;)
Surprisingly enjoyable light-heartedness...lucky iplayer find a bit fabulous ~ he's yummy & too young but sue me!
Atlantis 1. The Earth Bull ~ Jason washes up on the shores of a strange and mysterious land:
Nice swift emotion processing...being in now...no current challenges to peace...appreciating this
I am working out more how distraction is needed at times...how it can help us work through our processes by taking a time out...I am still recovering from a non bath bath....I was not able to wash myself but I was able to sit in it and even sit back for a few moments a couple of times....things were going round my head about why certain buttons cause me to react in certain ways...
On a lighter note this was just so English, British...yes we have collective kinds of ways of being that has many subcultures among the masses of individuals that we recognise and feel at home with some and not so much with others. I am of the female gender that puts me in a group. I was born in England, that puts me in a group. I live in Wales that puts me in a group. I am an artist....and so on and so on. I don't get on with all females or all artists, that is okay. I don't attack other females for being a different expression of female than me. I would call a female up for being cruel if she ridiculed another female for being female in a different way or if she did it to me when I pointed it out as unkind.
This has slipped into the energy of what has been the drama in my life the last couple of days. By my life standard of drama it is insignificant in many ways but a major thing as well. In my process of working through it in a group situation, I was told to let it go before I was ready. While I was fresh from being mocked again. Something that hits buttons put there in my childhood. So yes of value but not an excuse for unkindness.
I see the system that I depend on for my living needs as very unkind in many places. I also appreciate it as I would not be able to live and survive without its grudgingly given subsistence. To shout out about it being unfair is something we are often admonished for by those who don't understand what it is to have to rely on a corrupt system. That may be a tangent too far but it is all a similar energy of control.
I had so many thoughts going round my head in the bath....being useful as a trigger to look even deeper does not excuse stubborn denial that the other did anything wrong at all, being obviously hurtful to many people all trying to be more heart centred and saying sorry for being sensitive and unable to deal with less kind energy.
I have also thought a lot about the fact I know I haven't got all the answers and I am doing the best I can with what I have at the moment on an energy level and the physical. I am a human as well as a being and sometimes react more from my human than my being and also the other way round.
Conflict only happens where there is at least two willing people to engage with it. If conflict is to be resolved fully then both have to see their role that leads to the play of battle of words and energy. To dismiss one sides part which could be seen as fault to blame them with is damaging as holding the blame aspect of conflict. It probably goes a long way to that being played out in so many creative ways we choose to. Projection is a funny one as well as often one 'side' will see the other side as projecting and themselves not doing so. This is a problem leading often in my experience to the one who uses the most deflection in the mirror of the interaction using it as evidence that they are always right and the other one is wrong. Hmm where does that leave either side? Both having won & both having lost maybe?
This is a work in progress as I unravel more. While I sat in the bath soaking in the epsom salts and still thinking I may be able to wash my hair and my body the thoughts came thick and fast. Memories of the very unkind ways of arguing and belittling to keep me subdued as a child by a sibling I could never please as it wasn't possible to change into a boy so I could be his brother and not this annoying little sister. If I had been Robert the little brother he would have liked and with the personality of me, I doubt it would have much changed the dynamics. I would have still been younger and still unable to deal with that style of arguing which was displayed so strongly by another the other day.
Considered superior intelligence and picking every thing said and done to shreds and as evidence of my 'wrongness' and their 'rightness' is something that can bring me right back to that child who felt despondent and despairing of having a place in the world. As I realised I had worth no matter how any one else saw me it still got to me but in a different way. It is not fair. It is not kind. I don't like the energy. I watch out for my shadow self that may feel a bit superior at times. That old adage of 'don't sink to their level, you are better than them,' is unkind in its own way. I am not better than them, I may be behaving slightly better but that does not mean I am better. I get my knickers in a twist when they think they are better than me when they are not, no-one is. They often act as if they are while displaying very bad behaviour. There is a part of me that forgives that but also wants them to learn to be kind and they are not always ready for that.
I wrote the poem directly after an engagement of conflict energy. I tried to set the time to GMT but it will only stay at Pacific Daylight Time. I ended up setting it to post at that time I am presuming 8 hours later...I added this bit between the hours of 17.33 and 19.19 Thursday 17th October 2013
All of this has been shared on my facebook wall too but I decided to keep it more easily found by making it a blog...
ps. I was taught to be sarcastic and fight back with stinging words. I did for a while and can be very good at it, a cutting, off the cuff statement is very easy for me to deliver. I have done a lot of work on myself to not do that so much because I can be very unkind and being unkind is something I don't want to be.
Monday, 14 October 2013
Faulty Data Used to Divide & Conquer...
Elaine Edwards shared a photo
It hits a nerve when I see this kind of thing shared... I had to say this and not worry if it makes me unpopular...Elaine Edwards I wonder how accurate and true this is...if the pensioner is in receipt of housing benefit as well it would be higher...whether both the totals include all the same aspects such as council tax benefit and the housing etc....these kinds of figures are used to divide and conquer us and get us fighting among ourselves blaming others whose blame is not as deserved as the tax dodging and tax breaks to big business....so the rich continue to get richer and the poor fight among themselves...
Elaine Edwards the system is wrong and in many places unfair in the most appalling ways but the propaganda used to deflect us away from the real problems and solutions make me feel sicker...
Elaine Edwards the system is wrong and in many places unfair in the most appalling ways but the propaganda used to deflect us away from the real problems and solutions make me feel sicker...
*The photos stated a figure for a pensioner and then for immigrants making it look like the later has around 4 times the amount a pensioner does. The way it was presented didn't make it clear what the figures included just came up with a total. I did keep it on my page but set to only me but it has now disappeared, either due to it being taken down or made private.* edit 18.41 15th October 2013
I guess I understand people not understanding the significance of spreading this but not spreading it after being given an opportunity to understand....if she wanted to share it do it from someone else's wall but not mine....it upset me....more than seeing it where I shared it from but then there is other stuff to do with knowing each other that factored in and the fact that she will be hurt I took her off list...
so many people believe so much shit...and some would say the same of me...grins
and I guess I did have a big sense of being let down I had been ignoring so when she did that it felt like a kick in the teeth after already being pushed out in the cold...
If it hadn't been for such a laborious procedure to defriend people I would have taken virtually every local person off my list a couple of months ago when my life felt so desperate and I had put pleas out for help and no-one responded....I was feeling no-one loves me, everybody hates me, I'm going to eat some wer-er-erms...big fat juicy ones incy wincy tiny ones, incy wincy wiincy wincy worms...oh dear....
I am not immune to acting as reactively and regressively in a playground manner...although I never joined in with any of the running to go see the action when the chant fight fight fight started up I would stay where I was or get out of the way...
I actually understand that and can be very forgiving of that having caused big breaks in contact...also understanding and appreciating I wouldn't have the energy to keep more up with many people and when the energy is not right things naturally happen and plans don't work out...and also appreciating the friendships that I can reconnect at any point with...those who mutually are pursuing other avenues as such...
I feel very serene...discussing this has helped loads...smiles
just kindness is such a blessing..
ffs it has been shared again!
I tried to put this and it had been removed....bless I hope I haven't upset a gentle soul...
I've taken it off my page...what you do with it is your choice...as I said on my page it hits a raw nerve when this rubbish gets shared xIt wasn't necessarily removed but she did defriend me...oh well...
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