(Un)Welcome to Atos 

Standard

Written for the benefit of those who have to be assessed by Atos and for my MH as I need to vent! 
I’m on ESA due to my ME/CFS. People have been telling me for ages that I should apply for PIP as it’s money that I’m entitled to, to help me. Hearing all the horror stories about Atos and how people who are almost dead (wish I was exaggerating) being turned down, I saw no point in even trying. Then I met some people who had been successful and the extra money had helped them and their families enormously. It has also opened a door to other support. 
Initially, I phoned up DWP on behalf of my son who has ASD. I ended up also applying for myself which felt a little strange, as if I was trying it on! The forms arrived and I was overwhelmed by the amount that needed to be filled in. Luckily, I was helped to fill in my son’s form by a CAB carer support scheme who regaled me with tales of Atos being inconsiderate and ridiculous (telling people who can’t cook to use a microwave – aside from the cost of ready meals, it’s not remotely practical for a family). None of this filled me with much hope. 
The biggest tip I was given was to fill out the form as if it were your worst day i.e. the days when I can barely move, in pain, emotional…. After requesting an extension on the forms, I managed to get all the supporting paperwork together to send off the forms. 
Maybe I was delusional but I had all the hope that neither of us would need an assessment and that the money would be freely given. I think, having heard all the horror stories, I should have realised that this was NEVER going to happen. 
After a surprisingly short wait, two letters arrived. They wanted to me to be at Gloucester for 9am!! A minor meltdown ensued before getting my act together and phoning them. I garbled a whole heap of words at the man on the other end of the phone and he concluded that it was odd as they was a centre in my home town. Phew! 
That encounter was positive and I really began to feel differently about it all. Anyway, judgement day arrived with a returning sense dread. A woman with a friendly voice had phoned the day before to make sure we were going to be there. I was taken aback by the niceness. Despite this, I woke up feeling sick and shaky. 
The building wasn’t hard to find and was only a short walk from the bus stop. We were met with locked doors, a security guard came to let us in. Then another locked door….then a receptionist behind bullet resistant glass….sat in a huge empty room with just a leery looking security guard and a place to hang coats for company. 
Immediately, I felt like I was seen to be a dangerous person, a low life to be feared. We sat down on some very uncomfortable chairs and waited. I clocked the cameras and the alarms on the ceiling. My son overheard the receptionist saying that she expected people to be more grateful that they were offering to pay for expenses. All was not well. 
My son started to get agitated as we waited. 5 mins late, 10…15…20….23 All I wanted to do was to lie down and sleep but the chairs made that impossible. A woman came to the door and called my name, panic. I checked that my son was going to be ok and left the room. 
The woman met me with a smile and I thought she was nice. She told me that she had been a district nurse before working with Atos and that she was well informed about health problems. Then the questions, which were exactly the same as the form I’d already filled in. 
Her whole demeanour changed, it was like talking to a robot. My brain went dead and I struggled to tell her how my life was impacted. I had to talk about what illnesses I had, the meds I was on, how my day to day life was affected. None of the questions seemed to give me the chance to explain how I struggle. 
She gave me three words to remember, then I had to answer some simple maths questions and show her that I can move my arms. It was almost like I was having an outer body experience, I didn’t feel in touch with what was going on at all. Aside from forgetting all of the symptoms, I found myself mumbling and looking anywhere but her face. 
She asked me to repeat the three words, I could only remember two. One word being ’tissues’ which was easy to remember as there was a box in front of me which I had to make use of. I did my best not to cry as I thought it would be seen as manipulation. I couldn’t stop all the tears when she asked about my PTSD and how I cope with crowds. 
And then it was over. I said thanks and that it wasn’t as bad as I was expecting it to be (IKR?!) and waited for my son. He seemed to think his went ok, he’d had the same maths to do and had to spell ‘world’ backwards. How any of this is useful with conditions like ME, ASD and mental health problems, I’ll never know! We both commented on how they asked lots about our asthma even though it wasn’t relevant to why we were there. 
After letting ourselves out (forgot to mention, on the way to the assessment we had to pass through another locked door. May as well have been a prison) I went to the toilets and collapsed in tears. It literally felt like everything I had held in just exploded out of me. If my son hadn’t have been there, I’m not sure how long I would have cried for. I was overwhelmed with the sense that I had screwed up in defending myself again, like I did in court. Having to justify to this woman why I should have £20 a week for an illness that you cannot see. It was all too much. 
Now all I can do is wait and see what they say. I’ve already looked into the appeal process as I’m convinced that it went as bad as it could have. 
We shall see. 
Love, hugs and blanket dens 

Exxx 

Triggered by my vacuum cleaner – a rant about abuse of words 

Standard

We live in an era where the terms ‘triggered’ and ‘trigger’ are no longer used to describe the experience of someone with PTSD but that of any one who can’t handle words or situations that make them feel uncomfortable. I thought I’d set the record straight on this as I’m sick of this word being used out of context. I’m also pretty pissed off that the *special snowflake* community has turned a way of me being able to express my trauma, into a laughing stock. 
I have never been formally diagnosed with PTSD, I’ve had therapy and been on courses for PTSD but never had the box ticked. It seems it’s an exercise in hoop jumping before they’ll do this. I’m in no doubt that I have PTSD and neither have the people who have been involved in my care. ‘Triggers’ was a word that I quickly came acquainted with and it was useful to know. 
When I get upset or scared or angry (or any negative emotion) I can look back and see if there was something that triggered it, triggered me. When I say words like ‘upset’, it really doesn’t hit the spot of how awful I can actually feel. Now that this word is in the mainstream, it’s very easy to just throw it about and use it to describe every time you feel a bit sad or put out by something. A similar example is the abuse of the word depression eg ‘My new shoes are ruined, I’m so depressed now.’ PTSD and depression are both serious mental health problems. Diluting the words that sufferers need to describe how they feel only contributes to the ongoing stigma of mental illness (yes, the stigma is still there and it’s huge). 
I thought I’d introduce you to some of my triggers so that you can understand (assuming that you’ve never experienced PTSD so please forgive me if you do know ….) what that word really means:
1. As mentioned in the title – I often mistake my vacuum cleaner for a person. That moment when you think there’s someone in the house, the fear builds and your jaw clenches… All from a split second of my brain interpreting the vacuum cleaner to be an intruder. It sends me back to a place and time that I do not wish to go to. At this moment in time, I haven’t learnt to control my triggers. 

2. Certain music and certain smells. I won’t go into specifics. Our senses are more powerful and influential than we, or at least I, probably give them credit for. I have being taught techniques that use the senses to stop flashbacks so they can actually be a good thing 🙂

3. I know that there are buildings and places that I’m not sure I could ever step foot in again. If I can avoid triggers then I do. The only time that I would consider facing a trigger is if it was affecting my quality of life. Sometimes avoidance is actually a good thing!

4. This is just a list of other triggers, some more potent than others …. Certain names, one born every minute – TV, door locks, open exterior doors, open windows, beds, night time, the noise of the extractor fan, being startled by someone, alcohol, drunk people, the smell of alcohol on someone’s breath, people who look a bit like my abuser, certain dates in the calendar …. 
The list could go on and on. This is the reality of living with PTSD, I’m fighting with triggers all of the time and it’s fucking exhausting! Being triggered isn’t about something or someone upsetting you, it’s about life changing situations that can reduce you to a curled up ball of mess on the floor. 
So yes, I’m bloody angry that this word is now mocked and laughed at because certain groups of people have adopted it. I see this word being abused (and I don’t used the word abused lightly either!) all of the time across social media and real life conversations. 
To those who misuse the word triggered and it’s many forms:
Fucking stop it! Grow up and accept that life can be shitty and upsetting at times but that doesn’t mean you are traumatised by it!! Get over yourselves, you cannot be protected from all the things that make you feel uncomfortable. There are many things in my life that upset me and I would rather not face but that doesn’t make them triggering. Your life will be so much richer and satisfying if you stop hiding from it. 
Ok, I may be being a little harsh. Do me one favour – please stop appropriating language that mentally ill people, like me, need to use to be understood and taken seriously. 
In the meantime;

love, tea and hugs 

Exxx 

The loneliness of a single mother 

Standard

I tweeted a while ago that I have been trying to write a blog post about the loneliness that comes from being a single parent. It was rather touching that so many women tweeted back with a ‘me too’. 
This isn’t going to be a social analysis of why single mothers feel so isolated as I don’t have the intellect or the energy so apologises for the lack of facts! This is simply my account of how it feels. 
To cut a long story short, I’m a single parent for the second time. I have three children and in the last 9 years we have moved house 5 times – 4 times were in 4 of those years. This has meant upheaval of all kinds, from the changing of schools to the loss of friendships. When I left my ex husband in 2012, I found that after a few months, a lot of my friends just disappeared off the radar. Since then, I’ve struggled to meet any new people. 
I no longer have to do the school run as all three have a school bus and I now live in an area that is far from the people I mixed with. In short, I feel like a bit lost and rather sorry for myself. People that I thought would stand by me, buggered off when my life took such a different path to theirs. I was no longer a married mother with a mortgage etc like them. Maybe it scared them, maybe they thought I might bring them bad luck or maybe I changed and they no longer liked me. I’m not sure that I need to know why though! 
The impact on my self esteem has been huge. Where is my place in society now? It hurts when people tell me to ‘get a life’ or make stupid comments on Twitter like ‘I bet they have no friends’ as it’s true. I’m a total loser! I feel trapped in a life that I didn’t sign up for and no, I’m not moaning about being a mum. I’m moaning that I’ve lost myself and my life along the path that I have been forced to take. The path has turned into a massive rut that’s pretty impossible to get out of.
My ME/CFS, lack of money, inability to drive a car, shyness and so many other little things prevent me from climbing out of this hole that I’ve found myself in. I’m also terrified that people don’t like me or won’t like me. Maybe the reason why I have hardly any friends is that I’m not very likeable. I know people who really do lighten up a room when they walk in and their energy really is infectious, the same cannot be said for me! My social anxiety and lack of people skills can make me seem cold and negative *sigh* 
The odd thing is, I never thought that my life would be like this. I’ve been delusional enough to believe that I was put on this earth to be so much more than hum drum beige. Yes, being a single mother and looking after three kids is a very valid thing to do – I’m talking about having something in my life that is separate from my identity as a mother. I wasn’t born a mother after all. And yes, I do have a boyfriend but that doesn’t change my social isolation from needing (and I do mean needing) women in my life. 
When I’ve attended support groups, they have this wonderful ability to bring back the spring in your step. Surrounding yourself with like minded or even life minded women is a truly uplifting experience. For whatever reason, I’ve not been able to keep those friendships going once those groups finish. I’m convinced that lack of transport has a huge affect on my ability to socialise – so if you don’t have a driving licence and have the money to get one, get one! I wish I had when I was younger and had the cash to do so. 
As the rain pours down outside, I know I face another week of sitting in the house on my own. I go to my art class once a week but I don’t see it a social time, it’s my art time. There are other groups that I could do to but I can’t afford the bus fare or the risk to my energy levels. 
As a single mother, no one is there to cook, clean, wash and so forth apart from me. I have to balance my limited social life with my limited energy levels. There’s no way I can just not cook dinner or not make sure everyone has clean clothes. I hear women say that they wouldn’t know what to do without their partner, I can tell you what you will do – bloody everything and then have no one to gripe about it to last thing at night! 
I was hoping that writing this all down would help me feel better, I think that I feel worse! I’m so sick of being invisible and worthless to the world. My teenage self was so wrong to think that I was somehow special and destined to do something extraordinary. At the same time, I don’t wish to just roll over and accept my lot in life. I guess I need to patient and let my life evolve a little more. 
Love, tea and crochet

Exxx 

Time hopping through life (CW)

Standard

Everyone now and then a time hop (other products may exist!) pops up on my FB feed to remind me of something that I knew nothing about in the first place. A child’s birth or an anniversary or just a great day meal this person happened to have. Yes, I’m being a misery but bear with me! 
Every time I see one I think to myself ‘thank goodness I don’t have that!’. There a lots of things in my life that I enjoy remembering and those memories will always be held in my heart. There’s also lots of things I’d rather not remember. This is how it might go ….
April 2007 wedding day – worst day of my like so far! Weeping quietly to myself in the hotel room. What have I done?! 
April 2009 Gave birth to my third child today, a beautiful girl. Husband celebrated by head butting and punching the wall then demanded I discharge myself. Home now, feel free to pop over when my husband allows you too. 
Dec 2011 today we had our house repossessed! What a lovely Christmas present for the children.
Sept 2012 rushing around like a tornado trying to pack all of our belongings into three cars to escape my abusive husband. At least the sun is shining. 
Jan 2014 today I tried to kill myself so I apologise for the lack of comms. 
October 2014 well, that was an eventful few days. Ex found not guilty of raping and sexually abusing me. Off to have dinner with family. 
I’m quite proud of myself for being able to inject some humour into these memories. As my nan used to say ‘you have to laugh otherwise you’d cry’. I think it’s called gallows humour….and is a much needed survival mechanism for those of us who have experienced trauma.
Until I’ve found away to process my traumas, I’ll always be bound by my past. Your past shapes who you are and what you become (having said that, a traumatic past is not an excuse to go and cause others trauma). I’m now in a place where I have discovered feminism and sisterhood, I doubt I ever would have if I hadn’t been through what I did. The negative experiences in my life created a deep empathy with other women that I would never have gained through a life of comfort and joy.  
When I do get moments of contentment and happiness, they rush through my body like champagne. However fleeting they are, they are mine and no one can take them away from me. 
Yours in sisterhood 

Exxx 

@womentogether: a co-op for women 

Standard

Ok… I don’t know where to start! I have so much stuff whirling around my brain, I barely slept last night. Before I go any further, please know that I have ME/cfs and am a single parent with three children (one has Aspergers) so be patient with me 🙂 Things may take a while to get sorted but never doubt my passion for this idea. 

The summer budget hit a lot of women yesterday, it was a cruel blow to all the progress women have made since we ‘stepped out of the kitchen’. Something the Tories fail to see is that if we punish women, we punish everyone. We are mothers, grandmothers, daughters, sisters, aunties, wives and friends. Such oppression of one gender can only lead to hurt us all. As Chief Seattle once said:

‘What we do to the web, we do to ourselves. All things are bound together. All things connect’ 

 (see: http://www.goodreads.com/author/quotes/331799  and yes, I know he may not have actually said it but the words have resonated with me for many years). 

The blog may be a rambling….. 

I’ve been thinking for while that the only way to survive the piles of shit (yes, I do swear from time to time ;).)that the government like to throw at us, is to rise up together and help our fellow woman. The Tories approach is that we help ourselves ‘I’m ok, sod the rest of you’ I don’t come from that school of thinking. Women are stronger together, I witnessed that for myself when I attended the Freedom Program. We had a shared hurt and comforted each other, offered a hand to hold and knowing nod. 

I want @womentogether to grow into a nationwide co-op for women affected by the cuts. The only thing that I really insist upon is that all help/advice/support is offered free of charge. 

By help etc I mean things like:

You could set up your own mini foodbank

Clothes swaps for women and children 

Legal, financial advice 

Going to an appointment 

Sending a woman a nice card in the post or tweeting her when she cries out for help on Twitter (I’m going to set up a Facebook page too) 

Practical help like gardening, food shopping, fixing a leaking tap. 

Skill sharing – whether that be teaching women to crochet/knit/sew, car maintenance, cooking on a limited budget, using a computer. 

This list is endless! You might be a nurse, doctor, plumber, mother, gardener, lawyer, journalist, artist, therapist…… Just being a woman is enough for this co-op so please don’t feel that you have nothing to give and if you can’t give but need support – this is also for you. 

What I need right now is help setting up a website/webpage. I have no tech skills so would really appreciate any advice on this. I also need a graphic designer to come up with a logo. In return, I could crochet you something! My aim is to have a network in place before 2017 when the biggest cuts hit. 

I don’t want this women’s co-op to get bogged down in red tape and bureaucracy    so I’m not registering it as a charity or ltd company (I’d certainly appreciate advice on it though).  Safety first at all times so I think women setting up local groups is better than one woman alone (in regards to practical help). 

On that note, I realise there are many groups out there who help women. I’m not stepping on your toes, please use this account to spread the word of the work that you do and the support you offer, that’s what a co-op is all about 🙂 Would be great to have guest tweeters,when established, so that you can promote your groups. 

So …. Whether you need help or can offer help or even both ….. Please spread the word about @womentogeher 

This is my battle cry. This is my call for women to come together so that we can ride out the storm through love and sisterhood. 

Love, tea, crochet, sisterhood, solidarity 

Exxx 

Trigger warning 

Standard

They say third time lucky 

Two chances have gone 
To touch the edge 
The sharpest edge known 
And the Sun only serves 
To make the shade darker 
It’s like every atom in me 
Has given up 
So I walk past tree trunks 
Touch the splitting bark 
To ground me back with nature 
Tell myself that Spring is here 
No time to go off hunting 
Yet there’s majesty in turning away 
Cutting off my hair and 
Make a painted canvas of my skin Whilst I chant my last song 
Thumping my heel into the dust 
With the beat of my soul
Until it  ceases to be  

 

Cats, tea and PTSD 

Standard

I’ve just started a course to help me through my ptsd and maybe get some of my life back. I have to be honest and say that I’m a little cynical that I can ever be truly free from my trauma, it’s not that I want to always feel like this way. It’s just that certain things, people, names etc will always be a trigger. I can never normalise that, normalising my trauma would be like denying it’s existence. 

Over the next few weeks, I’d like to share with you some of things I will have learnt about ptsd, how it affects me and how I can learn to cope with it. If you have a ptsd diagnosis or think that’s what you have, this blog may trigger you so please consider self care. The only advice I give is to constantly pester your GP for support, unfortunately it takes a long time to be taken seriously (in my experience anyway). 
My ‘homework’ last week was to come up with a safety plan to deal with suicidal feelings and to establish my 5,4,3,2,1. 
This is my safety plan so far: 
  • Don’t isolate myself – talk or just be near to people I care about. Maybe even carry a photo of my children with me. 
  • When I start to feel triggered go to my 5,4,3,2,1 (more on that story later 😉  ) 
  • Distract myself with tasks or even have a nap under a cosy blanket. Hug someone or something. 
  • Don’t bottle up tears. 
  • If the feelings of suicide continue then I will phone the Samaritans, my GP, 999 or take myself to A&E. Who I call depends on how desperate I am feeling. 
  • Really, really need to sort out my stockpile of meds ….. 
I have to recognise that when I become suicidal, it’s not helpful to dwell on it. It’s easy to become fixated on suicide and I know that I have spent too many hours researching ways to  kill myself. What I find helps is the fact that I very much want to live!! This may sound oxymoronic….. I’ll try and explain. 
I get suicidal when everything becomes too much. Suicide is then my only solution to dealing with all of the pain. The sad reality is that if the pain stopped, I’d be happy with life so it’s not my life I wish to stop but the incessant suffering. 
This leads me on to 5,4,3,2,1…. The numbers refer to your senses and how many things you require for each one. The theory is that it brings you back from traumatic memories and places you in the present. I think it’s called grounding … 
So here’s mine: 
5 things you can see
1. My children (or photo of)
2. My cat
3. The sky
4. Flowers 
5. My phone (no comment!)
4 things you can feel/touch
1. My cat
2. A soft blanket 
3. My hair 
4. My bracelets 
3 things you can hear
1. Cat purrs 
2. Music
3. Birdsong
2 things you can smell
1. My cat! 
2. Lavender or other strong smelling herb/flower 
1 thing I can taste
Mint sweets 
And guess what covers almost all 5…. Tea!!! Oh and my cat and crochet too 🙂 so tea does heal after all. 
Many hugs.
Love, tea, crochet and cats
️Exxx