A Cure For Life?

Today I am in a bubble of impending double bubble so Elaine may not be with you today, she is snuggling in the bosom of her being, a nurture of self after an incredible cleansing energy has been breezing through...

oh and eating cold hard but tasty well done chicken...and may have to have another cup of tea and may not be as quiet as she first thought...and she is now wondering why she is referring to herself in the 3rd person but isn't worried cos this is the kind of thing people do when they are preparing to write their first book maybe...I don't know but I don't care. I can't be any other way than how I am and I don't want to harm myself trying to be. I don't fit into society very well the way I am but I can live with that. It's better than dying trying to fit in.

 Ah it seems from this lovely bubble a dash of communication comes forward...as I sit narrating what I am to write to myself!

It seems to have vanished as I sat forward to type again.

Where was I?
...
Considering the times I have felt like dying is a better option to what I am living. I have been talking of my past, of moments that were horrific to live through and heartbreaking to a fair extreme. I was considering that the experiences i have had have given me insights into the damage that things worse on the sliding scale of bad things to happen to a person. Added to the mix was reading Sue's blog about Clegg's plan to 'cure' the mental health of the nation. Which made me laugh because the government have felt like big bullies to those who have any part of their health problems affected by their self image and mental health, often due to trauma. Then add trauma of being declared fit for work when you really wish you were so you could get on and create all the things you have in line to do when you find a precious bit of energy. The way abuse and indifference affects us is pretty badly on the whole. To be cured of this is not really the way it works. To make peace with it makes life a much better place to be. Less thoughts of dying being an easier option.

I always found it ironic when I had been making tentative or strong plans to end it I would often have the choice of panicking in a real life threatened situation. Had I panicked in those moments I am certain at least one or two of them would have resulted in me not being here now and some may have resulted in a long hospital stay or being sent home unfit to self care. My will to live has always over-written my will to not live and not keep striving to make peace with my struggle. I really don't know how I have survived some moments. At times facing my fears has been intense physical pain that has no medical reason as far as I know. Most of these I have not reported to the doctor as they don't very often take full notes of all symptoms I am experiencing. I don't think the tinnitus is on record and has never been acknowledged that I have mentioned it or examinations taken place for it. I don't mind it I made peace with it early on, two years later I don't always notice it.

For now I think I am done... 

Elaine Edwards

I'd love to be able to be involved in a protest art group, that sounds like an amazing opportunity, although I may not have the energy to give to it that I would want to. I do actually have a few theories of if not cures ways of making the cfs less invasive on living, these would benefit some and not others as all 'cures' need to be tailored to the individuals personality and belief or ideas system. The placebo effect is marvellous but the kind of reverse has been happening with all the fear and poverty that is being added to the mix worse than it already was. In experiencing it myself and making peace with it to a great extent, I have come to understand maybe a little of the game-play, at least knowing what triggers they have been hitting on many people. The feeling that it is sinister and intended just adds to the trauma experienced, making it a little harder to stop playing the game of the victim of the system. I am still not able to make phone calls and do essential practical things to be able to be a correct citizen as such. I'm thinking of the therapy of transactional analysis as I write this.

2 seconds ago <<< I was then added this

First let me fill you in on yesterday...

Elaine Edwards

is being ambitious...I have taken chicken out of the freezer to defrost...I am trusting I will be able to cook it and not leave it to go off...

22 hours ago ·
Elaine Edwards smiles...he has no chance, it is not in an area he can climb up to...in a roasting tin with a lid...he always gets a feast when I cook chicken portions as he gets the skin, I am being very ambitious cos I am defrosting enough to make soup...seeing as I burnt my last one the other nights some time ago in the haze of the days as I sleep odd hours...grins 22 hours ago

Elaine Edwards Smiles...we all need our quick ones...don't fancy that one myself but I do have ways to feed myself when spoons are low....I do need to shop though as many of those emergency quickies are needing to be restocked...I'm kind of resisting asking for help at the moment but I may get the car back on the road tomorrow and be able to do it myself...always a hard balance to find keeping your own ability to be self sufficient and letting someone take part of the strain with you or for you...20 hours ago 

 Elaine Edwards no (slow cooker) but I am doing well it is in the oven not far off cooked and I am not forgetting it is there or falling asleep...I managed to do some sausage, stuffing and bacon rolls don't think I am going to be able to do a dinner but those and some chicken leg will be good for now...17 hours ago ·

Elaine Edwards

smiles and hugs back at ya :o)
I've just eaten 2 of the stuffing rolls....lush as feck! I may eat another the chicken portions are nearly done too....may switch it off in 5 or so minutes and leave them to crisp as the oven cools down...been ...awake since about 02.30 or something so I am doing well, may have an early night then....see how I go...

16 hours ago

 

Elaine Edwards damn...thought I turned the oven off...good job I checked it was well over done but had I fallen asleep...think a slow cooker may be a good idea at some point...15 hours ago ·

Now I am done for now. Time to meditate ooh and drink my tea...just in time before it went cold...

 Am I allowed to deal with my life in my own way?

While I get better enough to be able to physically and psychologically deal with life and working again, can I enjoy the process. Does it make a difference if you can grasp that while I am making peace with my life and finding joy in the simple things and taking delight in moments I can feel normal that I can't do much? Does it look like I can do anything because I have survived and kept learning how to thrive? Does it look like I am just lazy? I can't be doing with worrying about it, it makes me ill and worried to be seen outside my own 4 walls, it could have made me afraid to express outside them in public places as well but how can anyone understand 'invisible disability' if it isn't revealed to them. Although we have to understand many can't open their eyes to see that because it is just far to scary to believe it could be true that perfectly nice human beings could be treated badly when they need nurturing and that they don't deserve being treated as nothing, just because they need to be looked after by the ones who can. So often so many people do not appreciate those who serve them at low wages, how can we expect them to empathise with what they do not understand?

ATOS Genocide?

A reply to a thread on Nick Clegg's wall on facebook...
Oh wow just read through the whole of this...trying to retain all the info and things said...I don't know where to start, so much said here already that I know and have experienced. Interesting about the blog thing I need to be able to concentrate to take that in.

I've also felt like it is a genocide beginning, in some ways the scariest thing about that is it felt a little bit like that when it was the last government was in, the man who assessed me in my home when I was often nearly dying from asthma attacks didn't know how to read a peak flow meter reading chart. He didn't know what it meant if my peak flow was hovering at 180, I am supposed to go to hospital but if I did I'd be in hospital far more often and they would then send me home unable to self care, I digress sorry my sob story is long and tedious! I was declared able to walk unlimited distance, with a normal gait, without danger to myself. I gave up at that point trying to get dla, this was 2004. I got the letter the day my mums neighbour was going on about how had her back was really bad and how she had been shopping in Carmarthen 30 miles away that morning (in her disability car) before the crowds. I had no ability to do that and felt hurt, but not strong enough to fight at that time.

Outside the appeal times I ended up in hospital for 10 days after trying to walk back to my sofa from my toilet. Luckily my family hadn't fallen apart at this point and my son heard my one call for help, he called an ambulance, it had been a close call. I was still being fed when hungry and unable to cook for myself and children. The man who assessed me smiled in a way that turned my stomach, it was spite, I will never forget that smile. I wrote an angry letter just ranting and getting my frustration out at the dla from my hospital bed telling them how wrong they were. It was actually taken as a valid late appeal. I got mobility but no care even though I relied on it and my daughter was some time later recognised as my carer. Yet when the family broke down it wasn't recognised I needed one any more. I often went very hungry.

I think I would have given up had I not got support at the time through myspace. The emotional and informational support I have had through there and now facebook has been an intrinsic part of my survival alongside my mum, my dog and my reflexologist/counsellor/friend. Family and friends abandoned me it seemed, so called invisible disability can have that effect. Some are coming back and I have forgiven much, including the lack of care in the system that made things so much harder, or at least how it made me feel. Still being a valid, creative, talented, intelligent, frustrated, thwarted one time vital person can be frustrating to watch and be, in fact it can be hard to believe there is any validity and worth left. Sharing on the net can be the only place of human contact a person has, it can also provide such a support system that eases people's burden that teeters on the top of the disability that is affecting them. The burden of being treated as worthless is a distressing one, especially if you believe you are worthless, which is a feeling that I have felt at times of greatest trauma.

Stu you really should be playing violin as I relate my sorry tale ;o)

What I went through at start of disability and nearly dying too often for comfort, which can make you look at life in a different way which alienated me even more from more people and made me better friends with people who could relate and understand...erm thread where are you...it paled into a mere flesh wound to what happened last year. The assessor smiled an even more disturbing smile as he put false statements on my report. Like when I was being raped the 1st time aged 18, I pushed what was happening to a recess in my mind. I didn't know at the time that is often how the survival instinct works. I had to keep my dignity, I had to keep strong. I stated my reality, it was mocked and I was declared fit for work. I have similar symptoms to Stuart. Stress makes them worse and can cause a relapse to the extent it amazes me I have survived ones such as that one. I appealed, ranted, wrote all over the notes, couldn't shut off, couldn't think of anything else, couldn't eat, couldn't shop, couldn't cook, couldn't sleep, would fall asleep for an hour or two and wake up crying. Actually I reacted far worse to being declare fit for work when I so patently wasn't than being raped for the 2nd time at 31.

Because of abuse trauma I have worked on how being abused made me feel. After the 2nd time I went back to college as a single mum, was delighted that the counselling I couldn't get on nhs was available as a student and took full advantage of 2 years intensive counselling whilst doing art, which was therapy in itself. I went on to travel a year 45 miles each way and 2 years 30 miles to do my degree, which I finished after having carbon monoxide poisoning, working part time and bringing my children up, such a slackers life for me ;o)

I did a year of post grad higher ed teaching training but became more interested in counselling and started training...then I had a bad allergic reaction to bleach in a charity hair cut, shaved to no 5 and dyed purple raising over £5,000 for local cancer and leukaemia care...I was also practising reiki at that time and unable to be a donor of bone marrow decided my hair which was long could be donated, actually still have the plait. The client who inspired me died early in 2004 she was 21, wonderful and talented and was a privilege to know. 5 days later the guy whose charity it was for had also battled leukaemia for 10 years and he campaigned for and got the national bone marrow register set up. I have met some amazing people who are very ill and do as much as they can to help others.

I have the wrong illness to be believed, although they are even declaring cancer patients fit to work when they are also patently obviously not...it has always been a scary place to be getting ill and having to rely on benefits, it has just got more so.

I have been suicidal through the lack of care and what looks very much like spiteful, deliberate, slow homicide.

Surely they know the psychological effect of increasing stress on the already traumatised. It causes suicidal fantasy, especially when the symptoms get unbearable due to the stress and pressure that is being put on the already ill person, if the suicide doesn't get them and they manage not to starve and get through, they can tend to get quite vocal and yes appear fanatical...

Think I may need to stop now...hurting, need food but expressing that has felt like a release, it is good for my mental health to tell my story and hope that someone will either find comfort in it that they are not alone, or another may actually wonder if they are being told the truth about ATOS and what is happening to the vulnerable, you see to survive the vulnerable have to be strong...wait....yes that means many vulnerable are not strong enough to get through precisely because they are at their most vulnerable when they are being metaphorically kicked a fatal blow...that may wound physically.

I don't want pity, I just want a right to survive and the appropriate support to do so, am I asking too much?

Sunday 22nd January 2011 22.37

I am hopeful for it but not as confident as I would like to be. I have an amazing CAB advisor helping me, she has spent a few hours in my home and can see for herself within the criteria the 0 points I was awarded should have been in the range of 50-60. It comes to something when genuinely ill people need representation to get a fair hearing...and I pray they are still there and able to help next time. I will find a way to survive somehow and even if the tribunal goes badly I will not let it nearly kill me. I will not play that psychological game...I may rant and get upset but I will god knows how survive. :o) x

about a minute ago ·

Fear Huh, What is it Good For...

Showing us our insecurities...but we often get caught up with the enormity of fear. It is something I have pondered a lot having faced much of my fear in a self therapy that I had no choice but to implement if I wanted to hang on to the little sanity I had left. I wrote the following on my facebook wall...putting it together here as I feel it has valid points to many...I've edited the swearing ;o)

I think we avoid facing our fears till we realise we have no other option...

and we find out as we face them that actually they are as damaging as we allow them to become.

Just thinking about fears I have faced and am still facing.

Thinking about people becoming suicidal because of the cuts and how must worse life becomes when illness and disability comes to visit, decides to stay a while, maybe indefinitely. It gets worse when there is very little or even no support. The thing that really hurts us is the fear, the fear we can't cope with the discomfort and pain, the fear we can't live with the disdain, the hurt and the fear can cripple us even more.

Living through the procedure of begging for less than subsistence welfare to survive when you are unable to support yourself, being turned down and/or reassessed and found not eligible, appeal, tribunal all adds extra strain. Being told you are fit for work when you are struggling to survive each day, some worse than others is adding insult to injury, rubbing salt in the wound. It leads to fear of how survival will be maintained after the fear of surviving health issues have already been faced many times and it can be made more likely of a death through stress than with help.

I've looked at that fear and I keep saying, "Fug you fear, you are as poopy as our government, you have no place here....get out of my face...love you guys, you showed me how strong I am and how insipid you are when I see past your bravado and bullying...poop that means I bullied myself cos it was my fear that hurt me the most....I forgive me, I may even forgive you too." *blows raspberry...and parps for good measure.

This is something that has happened over and over again for me. You can exchange government for rapist, ex who hurt me, friends and family who hurt me....it all boils down to me hurting me in the end, even though it is through the hurt of other peoples treatment of me.

Someone mentioned we can't always face it in one go...we need to measure out facing them.

yes...we can't face them until we have to but sometimes we have to avoid them until we can cope with what we have to do...if that makes sense? x

just been reading something about filling the forms in and being assessed which was just like something I may have written but more formal maybe...now I have Stranglers singing 'Something better change' in my head, I may listen to it out loud or just start singing!

It was in Guardian online, I've been unwilling to register on many of these places...I'm not totally sure why either...maybe it is time for me to do so...

we are all facing our fears...and it aint easy

some lives make those fears seem even more hugely dark shadows that can give them more power to cripple us further...

LOVE to all facing them there fears...and hugs x

When we have our back against a Wall...

yeah although we sometimes fight instead then...till we collapse and fall into the arms of our own love... 

So there we have it...no final conclusion as there is no such thing, we are never finished. We can't get it wrong because we are never finished...to all dealing with fear remember this too will pass....see you on the other side, but not for many years yet x

 btw can we put this to UK time at all? I posted this 00.58 Sunday 23rd January 2011 my time :o)

Follow on a Few Days Later Fit For Work

Angelishylainey | 19 January 2011 | 0 likes, 0 dislikes

I recorded this today after being awake from about 12pm. I had slept on the sofa from about 1pm Tuesday. The day before I had slept in bed 4pm to 11pm. I tend to just go with my flow with sleep as if I try to force it, it doesn't happen, I try to swing it back round naturally. If I had to fit into someone else's routine I would be at collapsing point very quickly. I get like that with the phases I go through, so anything that I have to be a certain place at a certain time is pretty difficult for me to manage.

When I finished recording the video I went straight to bed and sort of watched a film, Constantine, led to some pretty interesting dreams but no demons. I have faced and fought most of my own demons and they were rather terrifying but I got angels on my side ;o)

I once dreamt that an angel and a demon were fighting. They took it in turn to kill each other then would resurrect and fight again. After a while they burst out laughing at how ridiculous they were being and decided to talk about things instead of this see if they could work together in peace...

I got up just after 9pm, hungry to the extent I felt sick I had half a baguette cooked and almost half a packet of bacon so before I even sat down I put the bacon in george grill and made a cup of tea. That is an improvement of the day, I shouldn't be too weak to cook a proper meal in a while now :o)

I went upstairs recording a follow on video to Fit For Work, which has been quite (I don't quite know what words to use, I think I will use them all!) remarkable, touching, almost exhilarating, nerve racking, wonderful and sad to share. It has been found distressing, disturbing, moving. People who don't know me or anything about who I am as a person are caring about me through this video, maybe not all but that doesn't matter. I have felt an outpouring of love and care towards me and that is beautiful, uplifting and gives us all hope for the humanity of society being repaired by us the people. Ironically we may become the big society in a kinder way because of the nastiness of the government and their absolute disregard for the human suffering they are inflicting.

I share because it hasn't broken me, I share because it has come so close to, I share because there are people out there with less tools in the psychological/spiritual toolbox and even less support than me who may and are breaking.

Now I need a cup of tea but I leave you with this that I wrote on Mental Health's wall...

I think it is the heart that knows we are safe, the mind puts a wall around the heart we have to break back open so the heart hurts in this process and our emotions run riot but if we go with them, if we make peace with all our fears and pa...in the heart can be open and accept so much more love as we freely share. As we learn from continually surviving the fear gets less crippling...it doesn't necessarily get less but we don't stop ourselves from sharing love because of it...if that makes sense, I've woken up but a lot of me is still not quite back in body yet....smiles



MOV00515.MP4

Now this is all shared I need another cup of tea, although I could sleep yet I don't think it is time to sleep yet is it?! If it is I will....smiles

 I've since read an amazing and deeply moving suicide letter that was left behind by a man who sadly could only share his shadows as he left. If only we could share our shadows with less fear of the lack of compassion that can seem universal in the shadow of our shadows.

http://gizmodo.com/5726667/the-agonizing-last-words-of-bill-zeller?skyline=true&s=i

I replied on a comment on there...

I often see it as lucky that I was 18 and had my first experiences with a much loved boyfriend who I had recently split up with when I was raped. It still badly affected me but I already had positive sexual loving in my experience. This letter touched me deeply. I have written suicide notes but luckily got through that moment of despair and slowly piece by piece picked myself back up again.

What you wrote about control of the situation hit me. Also knowing I was 10 years older and although a horrifying experience, it only happened once and I never saw him again and I had more of a chance of less self damage than a child whose only ever known sex after rape. My heart goes out to you because I know how hard it was for me. For years I blocked what had happened.

I was at a festival we had met in a music tent and gone for a walk, kissed a little and he took me into a huge empty tent. I didn't realise I wasn't safe until I said it was time for me to go back to my family and he grabbed my wrists tight, stared me in the eye.

"I don't think so."

I knew he was too strong and fast for me to get away from him, I knew I would be hurt. In an instant my self preservation kicked in. I suggested how we proceeded. I took control. I pretended I wanted what was happening and I didn't get beaten, he was even gentle.

In the morning I even pretended to the world that nothing was wrong. It wasn't until years later I could admit to myself or anyone else what had happened. It hadn't affected me in an obvious way but when I was 31 and was raped again, I had counselling and started to unravel the damage to my esteem and psyche.

If only there were not such shame heaped onto victims of rape, even more than the rapist in too many cases. If only it were widely understood the way trauma can destroy the relationship a person has with themselves, which is how we relate to everyone else. If only it were understood we each have different ways we can make peace with even the worst things that happen to us, that there is no competition to what deserves our compassion and what does not. If only we were able to talk openly without fear of rejection and that fear of how another will look at us if they know all our shadows...he has left a legacy towards opening up that understanding, bless him, bless you, bless all of us who suffer with darker shadows than most.

I related to large parts of his letter. I wanted to have been able to hold him and helped him shine light on his dark shadows, hold him as the adult he was and the child he had been. Hold him and help him find peace to exorcise the ghost that haunted him of his tormentor. I have held the ghosts of past hurt and abuse long after it finished, I learnt how to let them go, it still takes me a while to do so when new ones are created. The initial shadows create greater shadows of all that follows...and so often debris of shadows are hidden to keep me on my toes.

One Month Before Heartbreak: Fit For Work

One Month Before Heartbreak: Fit For Work: " Please note: This video is particularly distressing to watch. It is an individual's honest representation of Britain's secret shame. ..."

Can I Help Me?

I'm a bit weary of the process of getting help at the moment as well...smiles

I was looking at the videos I did on November 23rd, which was when i cut the carpet up. It was the day after the visit from a new befriender from WRVS, which had been pretty traumatic and completely exhausting. She'd pointed out that being in the house was making her mild asthma start to flair up and that the wall was indeed damp in the corner. I was also noticing how much mess was in exactly the same place now as it was then. This befriender was offering to help me with shopping and when i was able to clear bits of the house and clean up. I felt it may be quite challenging working with her but I was quite looking forward to it. *Working = sitting while she does things if I am not up to doing much, which can be as distressing and exhausting as not having help. She never came again. In the new year I was dealing with having the tribunal postponed to give me a better chance with CAB representation and support. The visit from the lady from CAB was both traumatic and very comforting, she treats me as a human being and is a beautiful soul. I feel more confident I stand a chance at tribunal with her by my side. It is not easy living with that hanging over me for the past 7 months. It is making me more determined to not let this kill me. I could have let other things defeat me, I made peace with them. It is hard to make peace with such an uncertain future.

If I could and I sold the house that would cause me huge difficulty and stress, living in it the way it is isn't easy but I appreciate I have my haven and that I haven't lost it, which could happen. I have 5 years before I am 'safe' there! When I focus on the problems I could get very upset and start worrying again, what do i do, what do i do? But at the moment i am trying to work up the right feeling I need to go to the doctors again. I need to pick up the letter from my doctor, which lists my symptoms and will cost me £37.50 or something like that. I am not sure if he really wrote something that anywhere describes how I am not just being lazy! After all everyone knows chronic fatigue is a really lazy persons excuse ;o)

Actually virtually all people i have met with it were driven people who pushed themselves very hard and were ambitious and have had to learn great patience to limit themselves from doing too much and totally wiping themselves out for days which may then drag as feeding self in that time is incredibly problematic and then if an infection comes oh dear you are not very prepared and will be going hungry a while. Then the often painfully slow rebuild to try and bring the weakness back to able to sit about rather than lie about.

I still can't bring myself to talk to befriender number 3 having met befriender 2 who was an elderly lady and maybe I was being ageist or maybe it was a certain way of her that prevented me asking for the same kind of help that befriender no 1 was offering and simply saying shopping. She said that just shopping was not really enough to drive 45 miles for, although I thought 45 miles was a bit of a long way to send someone. No 1 would have been her first time befriending experience, I think I overwhelmed her. They decided someone more experienced may be the ticket so No 2. I didn't think to mention that prescription getting and maybe doctor taking may be very welcome too, help with sorting out the nebuliser which needs servicing could also be in the spectrum of shopping.

I also don't get to see anybody every week, so it would be nice to have that but it needs to be someone I look forward to seeing or I would prefer to see no one at all. No 3 is an elderly gent and sounds lovely but they didn't tell him I am not good in the morning and he started ringing at 10am, I ignored the phone, I can't always cope with talking on the phone. Lovely lady in Mind on Friday at the befriending group rang him and told him I would call back when i am feeling a little better as i have been overwhelmed. It was hard for me to ask her to do that for me but glad I did. I didn't want to appear rude but I couldn't deal with it.

I like to think of myself as fine and on top of things! I am on top of a pile of paperwork and rubble with leaks and badly managed house maintenance. I am teetering and it often feels like I am falling. I know I can do better but a bit of appropriate, informed support would go down so well and help me do better. Neither No 1 or 2 were told I have a dog, neither of them were good with dogs.

I love what I said in the video Nov about how I felt triumphant and defeated at the same time. I am managing damn well for the difficulties i have, if I was just lazy it would be 'a bad show all round old chap.' I am quite capable of a lot of things, given half a chance.

Yeah petition for DIY SOS to come and sort me out and tell them they would need to help me pack to move my stuff into storage while it was being done, cos although it is very scattered i still know where most things are....there needs to be things thrown out during packing and ONLY I know what needs to be kept! Although as long as they were not going to throw anything out and stuff was somehow going to end up in the art room and in proper places maybe I could let go of the fear of not being able to find what I want when i want it! I've already lost some things so discovering new places that things are tidy would be marvellous....lol...I think they would shirk at the challenge! I'm too hard to help...bugger!

This was my reply to someone asking what support they could maybe give me...on my Fit For Work video. Oh good grief I wonder if anyone locally who knows me will see it...someone I am not connected to here... and by heare I meant facebook! I am not used to the fact i am writing somewhere new for me, yet. I could get carried away, I always was wordy unless I was hiding in my shell.

One Month Before Heartbreak

I have just been crying and have had to remind myself that just because my body has let me down, just because issues of past abuse have gone towards the conditions I now live in, just because I know how hard I struggle simply to survive each day, some worse than others, just because so many of us struggle as much, more or less, just because I don't always notice when I have a really bad infection, just because the government have employed the service of inhumane ethics, just because ATOS is seemingly criminally insane with many employees not only unfit to judge a person's health but out to strip them of essential help for their survival, just because all of that I will not lie down and die, not yet, not till I have no other choice.
 
I became ill in 2003, medication further inflicted me with more symptoms, more distress and more challenges to my well being. I am penalised for not wishing to take anti-depressants to help me deal with the psychological distress which is not only due to a history of rape, debilitating illness, acne that covered my face from meds, lack of support, family breakdown, chronic fatigue syndrome, faulty adrenaline response, panic attacks, insomnia, ibs, blah, blah, blah but made worse by the merciless system that seems to do all it can to make an ill or disabled persons life even more hellish.

The rape trauma has paled into insignificance at what I have gone through being declared fit for work...

The tribunal was set for 12th jan but CAB couldn't represent me in that short notice after the Christmas break, so luckily and unluckily it was postponed. It meant I had to live with the worry all over Christmas of maybe having to go alone to tribunal and that I could unfairly be judged fit for work again. It means I go back to the uncertainty of when I will know what life has in store for me. Will I be having to deal with the jobcentre as a person presumed able to work, despite my reality, or will I be given some breathing space to continue to work towards my well being?

I have cried most of today because I have been getting my strength back up and did some of the things I can't normally consider. It was finishing a job I started 2 months ago, cutting up my rotting carpet from the front part of my living area. Unfortunately due to my conditions my dog sometimes wees in the house, he has wee'd all over this area. It made me suffer quite badly to do these things and I am now in quite a lot of pain. I could have had an easier day by just attending to my basic care of feeding myself. I was thinking the whole time I was doing it that if I was fit for work my house would certainly not be in the disgusting state it is and I would still be selling crafts, art and practising Reiki. I'd also be looking into finishing the counselling training I had started.

I have had good things too and crying is a good stress hormone release...and the fact I have removed the aromatic carpet is pretty great, even if it has cost me far more dearly than if I was able bodied...see i hate to think of myself as not able bodied but when I do things I have to admit I am far less able to do things than I want to.

My dog helps me in many ways to keep strong but his side effects really are a bit smelly...he can be very naughty and is deeply aware of how unpopular his weeing on boxes and buckets and plastic bags is. When I discover a wet patch and smell it he looks at me in that shamed way and runs, he knows what he is doing! I don't always discover them as I actually don't very often go to the front of the house, it is unnecessary walking. I often need to conserve that energy to do vital things. I have mopped the floor, while spoiling the food I was cooking. I discovered wee on the other kitchen carpet as well. I am exhausted and hurt in most places. So I am doing my best to relax and let go...

I zoned out there for 1/2hr or so after I had written to this point. I am quite confident this will not cause a relapse, although if it does I will be gentle with myself. I find it so frustrating cos I would have carried on working if I was in any way fit to and would have made a thorough job of it. When I was feeling well before 11/11/2003, I could have sorted most of this house out in a couple of weeks, including decorating and attempting some of the diy jobs that need doing myself. I'd have a good go at sealing the roof, it may come to that. I may even try if I can keep feeding myself daily....smiles.

I've been a sickly person most of my life, so I have more often than not been pushing myself harder than most have to. I didn't mind an awful lot, it was just the way it was. I rarely took time off sick when I had an infection or I would never have been in college when I did my GNVQ, that was the run up to having my tonsils out, which happened Feb 1996. I was also a lone parent a 9 yr old and a 5yr old and worked part time, Saturday night bar work. I was often exhausted but I was able to keep pushing myself, keep getting the children to school, me to college mostly on time, mostly finding it an immense effort especially the mornings. If I could mange to do it now I would, if I could manage to run a shop of my work, I would. I managed to get a 2:2 for my art & design top up BA specialising in wildlife illustration after having carbon monoxide poisoning from near the end of the 2nd year of the HND till the end of August 1998. I was driving 30 miles each way for those last two years, the year before was about 45 miles. I aim to be able to work towards sending work to publishers and selling my crafts again. First I have to be well enough to self care regularly enough on a consistant basis for my symptoms to be managable.

I couldn't even manage a day with 2 2hr lectures last year, once a week and still self care enough to go for reflexology 2 days later and be picked up for Mind befriending group on Friday's. I found that so distressing I asked for a psychological evaluation as suicide seemed so tempting. I came very close to break down. My car did the very next time I went out in it after considering if I had the energy after the 5th week to go and buy a hosepipe. I knew the exhaustion saved me last night. Ironically the exhaust pipe fell off my car that next time I was able to go out and drive it. I was also less keen on the idea having got to the point I could leave the house again.

I don't want to rely on a pittance that I have to beg for to survive, I'd far prefer to be fit and healthy. To me it seems the system is doing all in it's power to make sure I have the least chance of that, it doesn't support my well-being in a humane way. I know I am not the only person who feels this way.

I have made peace with the rapes. I have an understanding of human behaviour of both victim and abuser and I understand ALL abusers have suffered abuse not all become abusers. Most self abuse with thoughts and feelings of unworthiness, they may also behave in erratic ways due to triggers. They may find it hard to connect to people and unintentionally hurt others because of enhanced fears due to that abuse/bullying/teasing. As a child I was teased a lot, it led to a self worth that made me easy picking for predators. I now know my self worth, I am being treated as if I am scum but I am not. If I can help any other see their own self worth I will.