Friday, 25 September 2015

Something in this moment clarified by the conversation in my head with another you out there outside of my world in reality of this moment but an aspect of the picture I hold as it unfolds, of who this person is. I was quite perturbed recently to learn that someone was imagining doing things with me, not just romantic and sexual but saving me from myself and reorganising me. I was a bit spun out to be honest. I hadn't wanted that, just help and maybe friendship. I felt energetically invaded by him.
It brought up ponderings of if that was how it felt when I become attracted to someone and attached to the idea it could work out and times of wanting to expand on experiences already savoured. I can't deny I have in my mind made one or two or maybe quite a few men into my imaginary boyfriend, either trying to involve them or not. Clears throat and suppresses a chuckle that was only half arsed anyway...

I am sensitive to energy of people, so I maybe feel it more keenly, or with an inkling that it is not just me thinking along lines of feelings and visionary glimpses of either mine or anothers dreams. I don't know if I am explaining that well to those who do not experience life in this way. I have found that a lot of solitude and isolation phases actually help me see what is my energy in any connections where it can get a bit lost and merged. 

I think we all have the sense of feeling each others vibration of energy, we just take it so for granted as it is as natural as sensing our surroundings with the more physical defined senses. We feel atmospheres in rooms, we all pick up on other individuals and mass emotional energies. If we are fractured in our boundaries by stress and illness it is harder to feel safe in crowds and to be able to buffer ourselves against the pulls and sways of all the swirls of energy around us. Which can account for many a panic attack I am certain of that...

So back to the point. Since I have become more aware of how we can play with each others energy while thinking we are just having private thoughts and thinking it is fine to do so, thinking we are respecting the other. They may have strong boundaries and anything you think their way bounces back to you or there may be cracks that you get into, delighting or annoying them or both. I am talking of my own experience of this both ways...

And still the point. When I realise I can't stop having thoughts that may be welcome or not if there are cracks for my energy to be invasive. I worked on more not focusing on the person but the aspects I enjoy and creating a character in my mind which may not behave how the person it is based on. Then when I find myself conversing with myself with their character being the other voice that may not say much anyway because I don't always give imaginary characters much chance to talk. Mind in the confines of the context of relating it is all about me when it is a person who is speaking to me because of their job. Of course some friends actually know when I am having daydream type conversations in my head with them, because they are also having them with me...

Now I am not sure if I really made the point but I think it is clear for me. After all the conversations in my head with another you are pretty much ones that bring up stuff I need to look at for either fun or putting old fears to rest in peace, complete and not in pieces....

18.58 Friday 25th September 2015  sharing here written half hour ago or so...

Friday, 17 January 2014

I Am Who I Am But What Am I? Blogging Lounge No 1

I wrote the title and put my keyboard back on my pillow, then wondered how I would type it without the keyboard. You ask me, *Who am I* the prompt for me to blog or not, no pressure, no this place here...

You ask me that and I go to try to answer by first putting my keyboard out of my reach, what chance do I have? It is a question I have asked myself many times. I am not terribly well at the moment or wonderfully ill, going by the pairing of terribly and well. I meant to say I am not awful but not great at the moment. I am according to some assessments disabled by illness that I experience far more than is polite, if illness were a visitor that could be asked to leave and it would. I am an artist according to my degree, I have sold a little bit of artwork and could sell more if I was able to produce and market it. I am a writer according to my collection of notes written in many different sized notebooks, journals and sketchbooks, scraps of paper, diaries, letters photocopied or carbon copied and digital files some of which can no longer be read that hadn't been printed. I haven't actually written a book and have a tendency to write things people call poems from time to time, some are not too bad and others are pretty dire but it is therapeutic and like a compulsive obsessive deal of needing to share.

I am a woman of the human race born in an area where accent can be easily recognised in Middle-ish England and learning how I have to become a grown up in the Shires of Pembrokeshire, Wales. I am not short though, 5'8" and due to malnutrition somewhat slight. I get care now so that is something I am recovering from more than maintaining. I didn't like maintaining being only just well enough to survive, well I did or I would have died but I always would have chosen help to recover so inability is not so much of a problem. That takes the strain off. It also leaves me sometimes less switched on than I am when I am well. I have been quite well at some point at that time I would have said I am quite vibrant and what were those other words someone was reminding me of the other day? Bubbly, sociable, only quiet when drawing but even then still talking to people as they came to see what I was doing. I was outgoing and worked hard, played hard and rested quite well.

I have been lots of things, many roles, many jobs and personal life roles, none of that really makes me who I am but builds a picture of what my experiences have been and how they appeared to myself and different people who will all give a slightly different viewpoint according to their perspectives of life and how they label me through it. I have had many opposite sides of experience, been seen as glamorous/ugly, brave/cowardly,
wise/stupid, to be figuratively speaking put on a pedestal/to be spat on, weird great/weird scary, good/bad, and much more and less. I became a non car owner a couple of days ago. I hadn't been well enough to drive for a while. I am a recluse it could be said now. I am in some ways happier than when I was able to do more of what I want and need to do. I am peace within chaos, I am calm within my own storm. I am thunder & lightening in my dark nights of the soul.

I am still not quite sure what it all makes me or I. The same as you are to me, I am me to me and you to you.

I am a part of the human kind, illness takes me out the race, suffering pain causing slowness and in that grace, I have made peace with what I face...

I am Love experiencing fear, maybe. As I have faced so many pretty awful things that can cause more fear and self perpetuating pain. Love has helped me deal with fear...I may just be a meditating hippy, who knows, it really depends on who is labelling me.

I used to think I knew. I was ok, not often confident my self image wavered and was often insecure, then I became empowered during art degree before my world turned upside down time and time again. It shook me to the core, shattered dreams I'd only recently dared to dream. Through times of against all the odds I kept pulling through and make peace with another layer of pain and fear. The counselling in college and subsequent counselling skills training all helped and the creativity and me taking it as an opportunity to discover more about myself and what makes me tick, how to avoid self sabotage and how to disconnect the trigger on some buttons that have had itchy-hair-triggers much of my life...

I understand much of my wrongly learned perspectives and ideas about how the world works. I still don't really know exactly Who I am or What but I don't think it is anything like we think we know. It doesn't matter though for all our knowledge and understanding it is all still very much a mystery as to how things really work...I am energy that doesn't know how to maintain itself at the moment, next week I may still be the same in quite a different way...

I was going to add a photo out of my sketchbook that I have an album on facebook done December 2010, interesting to look at what I was dealing with then and how to the untrained eye I am probably not much different to then or worse, may look like I have not made progress...who I am is both different and the same...

Or something like that...

Tuesday, 10 December 2013

When You Live With Chronic Illness

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
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 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.
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'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...

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...

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.

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
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 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 the stuff they mine a paradise for in Avatar....
07.28 unobtanium 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 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.

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 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
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...
*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. 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 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

 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....

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.

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.

There is a mixture of information and disinformation in many ideas shared as truth. I've added a tangent maybe too far but I feel the need, the need to share. Not quite as noble as the need for speed, cocky, pain in the ass fighter pilots who need speed, but maybe a warrior all the same and maybe just as able to be a gob-shite in my own style. I may be doing good work, I may just be playing in my imagination, whatever I am doing I am enjoying my life even with some major hindrances to ease of joy. I enjoy it far deeper now it is so precious and rare to have a moment of easy, ease.