Dear Justin - Come Walk A Mile In My Shoes

Dear Justin Tomlinson
I noted with interest that during the ESA & PIP debate at Westminster on 30th November that you urged Ministers to observe an assessment which you feel are an "opportunity" for people to get help.
My experience was not that, however I do have to say that I was treated with as much dignity and respect as possible by the assessors who had to subject me to the grilling that these assessments dictate,
However - I write this letter to you as an open invitation to attend my next assessment with me.
But before you do so I would ask that you would take some time to come and walk in my family's shoes on a bad day - so that we are not complete strangers.......

I would ask that you come and take my children age 8 and 11 to school and explain to them why their Mum who loves them dearly cannot physically get herself out of bed to take them.  That would allow my husband to return to some sort of normality with his work life which pays our mortgage and bills currently whilst I am not well enough to work. You could then spend an hour with my husband and listen to how caring for me is impacting upon him and his health and well-being.

I would ask that you come and wipe away the tears that I cry because I spend from 9am-3pm wishing the kids were safe at home with me rather than at school where I am convinced something bad is going to happen to them - and then 3pm-9pm wishing they would go to bed because I am such a wreck that I can't cook them dinner, do their homework or even muster up the energy to converse with them. Come wipe away my 8 year old's tears when he asks me if I am going to die and leave him and all I can do is cry in response.

It would be helpful if you could come and cook for the boys and my husband as I am currently unable to as the very smell of food makes me want to vomit and the medication that I am on to treat my anxiety and depression makes me unsafe in the kitchen.

I would ask that you come and hold my hair whilst I vomit bile from an empty stomach every morning due to the anxiety of having to face another day, quickly followed by the other end evacuating itself due to my IBS/IBD. (Sorry - bit graphic but welcome to my world)

Come and sit with me as I lie on the couch with my car keys in my hand watching the clock for the next train that is due to pass the railway line that I could drive my car onto to end this pain that I feel like I cannot bear for a minute longer.  Help me to stay strong enough to realize that this is not the answer.

Come help me argue every minute of the day and night with the voice in my head that tells me I am a waste of space and that everyone would be better off if I'm dead. Remind me that I WILL get better.

Then I am sure you would be a fantastic help with filling out the forms for DWP,   Come help me as I have to put down on paper my worst days and nights.  Remind me that what I see in-front of me in black and white is an illness - its not me because right now I feel like I am nothing but my illness.

As one of the Ministers so rightly pointed out - this is NOT a spectator sport.  We are being asked to pour our hearts and lives out to a complete stranger whilst we are deeply unwell, and in my case TWICE within 8 weeks.  But......my invitation still stands.

I look forward to hearing from you
A Tired and Frustrated Benefits Claimant

The Benefits System That Prevents Me Recovering...

Dear Nicola Sturgeon, DWP & anyone else who can maybe help

I am writing this because today I am having a bad day.  And the main reason I am having a bad day is because I feel hopeless.  You see, I am currently recovering from a very difficult period of anxiety, depression and panic. (I also live with various other long term health conditions – but they were not taken into account during my recent assessment with yourselves)

When I say very difficult, let me explain that that actually means life threatening.  Yes – I know those are normally words that you hear attached to illnesses such as cancer or heart disease, but let me tell you – mental illness is like cancer of the brain and the heart all rolled into one. 

Mental illness made me believe that my two young children aged 8 and 11 would be better off without me in their life. 

Mental illness made me believe that I am useless and worthless and that I have no skills worth sharing with the world. 

Mental illness made me believe that my close friends and family were ashamed of me because of my illness – for being so weak and useless.   

So yes my mental illness was life threatening.

I am trying to recover, and have been for the last 10 months from the day that I feel like I fell off the planet.  For 7 of those months I have been awarded Personal Independence Payment which I have never claimed before regardless of living with many long term health conditions. And for the last 4 months I have been receiving Employment Support Allowance.  Contrary to popular belief and what the media likes to portray – I do not want to be on benefits for the rest of my life.  I want to get back to work and I want to get back to being able to effectively self-manage my health. 

I want to get back to being the passionate, driven and innovative person than many people know me to be and that I know is hiding within me underneath all this self-hatred and self-doubt.   I’m not going to give you my full CV here but let’s just say I have done some damn good work in this country in the field of mental health, which has been recognised at both national and international level.  And I want to get back to it – but I’m stuck – you have me stuck right here being unwell – afraid to move forward!!

And the reason I am having such a bad day is because I feel completely stuck and in limbo.  You see – if I start to recover then the likelihood is that you will remove my benefits.  And if you remove my benefits too soon whilst I am undertaking this absolutely vital recovery process then I know that I have a high chance of ending back up in the desperate dark place that I have fought so hard for the last 10 months to crawl out of.  You see – just like recovery from cancer, recovery from mental illness takes time. 

For me it also means taking risks – facing my fears, challenging my false beliefs.  Challenging the voices in my head that tell me that I’m a useless piece of crap.  Challenging the voices that tell me that my family would be better off without me.  And let me tell you - this is like running a mental marathon every single day inside my own head. 

Thankfully – like any recovery process things get easier as time goes on, but that does not mean I am recovered.  It means that I am recovering – and if you pull the rug from under my feet then I assure you I am most likely to fall. 

So what do I do???  Do I push myself to take risks which I know is the only way that I will move forward – but risk losing my benefits or do I stay stuck where I am; wanting to be well and effectively self-manage my health & well-being but unable to for the fear of losing the benefits that can help me to get there.

Any advice would be gratefully received.  I don't even know why I'm doing this....  putting my head above the parapit, but I guess in some small way I hope that my experiences will help change things in the future........

Yours sincerely

A distressed and frustrated benefits claimant

DWP - The hand that feeds you - or oppresses you.....

It’s been a while since I have blogged.  It has taken me about 3 weeks to complete this blog.  For those of you who know me, you will understand how bloody frustrating this is for me.  Writing/blogging is one of the things that I can usually do without giving it a second thought.  But sadly my mind hasn’t quite been my own for the last 10 months, as I have been visited again by my old friend depression – who this time has a sidekick, namely crippling anxiety.

Yip – in December 2015 I fell, and I fell hard.  I fell so hard that I felt as though I had shattered into lots of pieces.  I’m still in the process of picking up the pieces and trying to get back together – albeit a different version of me.  A healthier, wiser version! 

For those of you who don’t know me, let me give you a short background.  I have worked in the mental-health field for the last 10 years.  I have worked in a variety of roles and settings, and most recently I founded and developed the amazing charity Hope Cafe Lanarkshire.  I have received awards at Parliament for my work in promoting positive mental health and self-management.  I have worked since I was 15 years old, and reckon that up until this episode I have probably had a maximum of 10 weeks off work in my whole working life (6 of those being after I had major surgery). 

Why am I telling you this?  Because recently I have had to apply for benefits.  I have applied for – and successfully been awarded – both PIP and ESA.  I had a good idea of how difficult a process it is to claim these benefits for mental illness from the previous work that I was involved in, but nothing prepared me for the actual reality of it.  Let’s just say that it was one of the most humiliating and upsetting experiences I have ever had to encounter.  The benefits system is so focused on what is wrong with you.  I was advised right from the outset that everything had to be based upon my worst day: though to be honest, for the first 8-9 months of my illness, 6 out of 7 days were like this.

So fast-forward: it’s been approximately 2 months since I was awarded ESA and placed in the “support” group.  This was a massive relief to me, as at this stage of my recovery I know that I could not cope with enforced work-related activity.  However, I 100% plan to return to work when I am ready.  I look forward to the day that I can return to doing what I love, and I know that I will – when the time is right.   But for now I am very aware that I need to invest time in my recovery.  

Two of my biggest stumbling blocks have been lack of structure to my day, and social anxiety.  Discussions with my circle of support, which include my GP and Psychologist, helped me to identify that volunteering might be a good move to get me some structure back.  I am more than aware of the benefits of volunteering to aid recovery, so with my family we looked at what I could possibly do.  On a rare day out, we stumbled across a Guide Dogs For The Blind stall and heard they were looking for people to foster puppies.  The more we looked into it, the more we realised that it would be a really good way for me gently to start to re-engage with day-to-day life.

So here I am, actively trying to further my recovery.  Pushing myself out of my current uncomfortable-yet-comfortable zone.  But – and it’s a BIG but – the benefits system tells me it wants me to get better … but will “punish” me for doing so.  I know from the experience of many of my peers that the minute you are seen to be able to move forward in your recovery – i.e. advise the DWP that you are volunteering – the likelihood is that your benefits will be re-assessed and reduced or stopped.  I cannot begin to think about having to go through the assessment process again – so my only option is to stay ill.  They don’t seem to understand that you cannot go from unwell to well without the process of recovery in the middle.  This process, especially for people living with mental illness, means slowly starting to re-engage with life again. For me this means re-connecting with the world; engaging in simple day-to-day activities like shopping and socialising.  But by doing so I am terrified that the benefits that I have had to fight so hard to get will be stopped, because I will be seen as no longer ill enough.  This is utter madness.

So here I am, afraid to tell the DWP that I am volunteering.  This needs to change.  I am not up to launching a full-blown campaign here, but I am writing this blog in the hope that someone who has some power realises how absurd our current benefits system is.  It does not support recovery – it hinders it.  

Some may say “don’t bite the hand that feeds you”. However, this hand may be feeding me but it is not nourishing me.  It is holding me back, keeping me down.  Surely this is madness?

I want to get well. I want to get back to work. But this process of recovery will take me time and effort, and I need to feel supported by the system to enable me to do so.  Right now I don’t.  I feel anxious and afraid of recovering, for fear that I will lose my benefits.

Hope Cafe - Small but Fiesty

Hope Cafe is a small project set in rural Clydesdale - so it was literally astounding for me today to hear how we have made such a significant impact on the mental health and recovery movement/ agenda here in Scotland. 
For the last 2 days I have been participating in the Scottish Recovery Network/See Me Scotland Rights For Life National Conference.

I am absolutely blown away by the enthusiasm in the room about our (what I thought was) wee project The Hope Cafe. 

Hope Cafe is a perfect example of a  project that has grown naturally from a need and a want right at the roots of a local community. 

It was NOT created in response to some strategy at government level or even a policy at local level.  It was not designed by "professionals".  It was designed and created by people in the community who knew what would have helped them at a time they were struggling with their mental health.

Hope Cafe is not a rich, well funded project.  It is a project that runs on a shoestring budget and the passion and determination of its staff and volunteers.  But it is a project that regardless of the many barriers it has faced in terms of location, lack of funding, lack of understanding - has against all odds managed to flourish on what was not necessarily fertile ground when we first started out.

Anyone who heard me talk about our project at the conference would have heard me speak quite openly about the many challenges we faced in the beginning as a peer led project.  We were met by many closed doors, much ignorance and mis-understanding and some downright nastiness if I'm quite honest. 

But - here we are being looked upon as a great example of recovery focused peer led practice in Scotland.  How have we managed it??

If I'm 100% honest I'm not quite sure.  In theory it should all have gone bottoms up when we tentatively stepped out in our small community speaking so openly about mental health.  But it didn't - and that gives me great hope.  It shows me that things are changing - and change is good.
I wanted to try and give you my tips for helping positive change to happen - so here we go:

1.  Be hopeful
2.  You don't need a lot of money to make a lot of difference
3.  Activism does not need to be about battering down doors, insulting "them" and demanding change
4.  There is no "them and us", we are them and they are us
5.  Quiet, confident persistence works - if you know you have a good idea stick with it
6.  You are stronger than you think you are, when you feel like giving up - rest & re-fresh & go back
7.  Never give up on something you believe in
8.  Utilise the strengths of those around you - many people have hidden talents waiting to be found
9.  Surround yourself with positive sources of inspiration
10. Don't get bogged down with what's not working - focus on what is working
11. Be realistic but optimistic
12. Get a WRAP plan to help you maintain your wellness
13. Be more hopeful

What this conference has really made me reflect on most is number 4 - There is no "them and us"

At the end of today I stood and shook hands with the Mental Health & Well-Being "bigwig" for my NHS area.  2 years ago I truly saw him as the key to the destiny of Hope Cafe.  I thought he was the guy that could make Hope Cafe happen and was very disappointed (maybe even angry) when he didn't at that time appear to have the same passion for it as me.
I thought we needed him but now I realise we didn't need him - but we wanted him on board because he is a good guy.  And I think I now realise that because he is a good guy - he let us figure it out for ourselves.
Now as we stand recognised as a fantastic example of good practice - we want him to be a part of helping us to continue to develop what is a fantastic project. 
Im pleased to say that over the last 2 years he has supported us (not always agreed with us - or us with him!!) and encouraged us - often very subtly.  He has enabled us to grow into our own skin.  We have agreed to disagree and that's ok because ultimately what we both realised was that we want the same things - just from different angles.  But the door has always been open and we have always been treated as a respected partner - an equal.
ultimately what we all want is a community that encourages, enables and supports recovery.  And I am very pleased to say that we seem to be on the right track. 

I guess what I took away from today was something that was said at the start of the day "We don't want to build walls - we want to build bridges"  

11 years being angry at myself when it really wasn't my fault...

This week I took a big step and viewed my medical notes from my time spent as an in-patient in psychiatric wards.  I always knew that it would be a challenging thing to do - but I felt the time was right. 
They made interesting reading.  That time of my life has always been a bit blurry to say the least.  I was unsure of how long I spent in hospital etc.  Its not something that has ever been spoken openly about in my family.   For many years I carried a huge amount of embarrassment about this time in my life.  I often wondered if I could have done more to prevent what happened, if I could have taken more personal responsibility etc ,  From reading my notes I can finally say in all honesty that what was very very clear was that I was very mentally unwell, and that people were not listening to what I was telling them.  I am so fortunate that I finally found an excellent GP who pieced together all the bots of information that led to my diagnosis and treatment for PMDD.

Here is a brief rundown of events:
6 months of continuous decline in mood following a hormonal injection (trigger) - no suicidal thoughts
Given Fluoxetine by GP, after 5 days I was taken to A & E by my family as I was extremely distressed and expressing suicidal thoughts and intent.  Had written notes etc
Admitted, questioned about marriage/stress levels etc and given diazepam and told to reduce stress levels
Discharged 2 days later on a higher dose of Fluoxetine with no follow up planned except GP
2 days later admitted to hospital after a "serious attempt at own life"
Medically treated and discharged back to GP with referral to CPN  - anything up to 16 weeks to see....
Still on Fluoxetine....

Thankfully my GP saw the red flag that everyone else seemed to have missed and immediately changed my drug therapy to venlafaxine.

Amongst other things that disturbed me was some of the language used in my medical notes.  I experienced huge self-stigma over the years and I wonder how helpful this conversation must have been to me...
Nurse "on discussing this today (suicide attempt) Donna realises this was a foolish thing to do"

But I am glad that I have read them.  It has helped me to piece together a sequence of events that I can now process, make sense of and let go. 

I am so thankful that my attempt failed and so thankful that I can now make a difference to others.
Onwards & upwards - to infinity and beyond :)

When you Wish Upon a Star (And you have the passion that lived experience brings...)

Tonight I worked alongside 3 volunteers from Hope Cafe as we worked hard to get the cafe ready for opening.  I cannot even begin to describe what it feels like to have achieved this dream.  So so so many years of thinking "you can't, you shouldn't, you won't, you will fail" have finally turned into "I can, I will and now I have!!"
In the words of Jiminy Cricket (many fond memories of watching this with my beloved Nana)

"When a star is born
They possess a gift or two
One of them is this
To make your dreams come true

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dreams
No request is too extreme
When you wish upon that star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longings

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon that star
Your dreams comes true

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longings

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon that star
Your dreams comes true"

 

Thank you Nana - always in my heart and dreams xxx

Enjoy https://www.youtube.com/watch?v=jGP-1eMgzUE

Social Enterprise - A New Way To Do Business

Thought I would share with you a piece I put together for high school students that I was asked to speak to about business.  Writing it made me realise how very very fortunate I am to be able to run a social enterprise.

Have you ever thought about running a business that wasn't necessarily about making you rich?  What if you thought about running a business that made you happy?

Is money what makes your world turn? Or is it happiness, compassion and a sense of satisfaction?

If you answered yes to the first question then social enterprise is probably not for you.  However if you answered yes to the second question then it most probably is.

Social enterprise is a new way of doing business.  Well,,,,I say it's a new way but I actually don't think it is.  I think that its the way that business used to be done before we got so caught up in this rat race that is life.  It s a way of doing business that helps your neighbour as much as it helps you.  If we turn back the clock to the years where my Nana was growing up it seems to be that life was about helping others.

What has changed?? 

The answer is quite simply life has changed.  We live in a society  where its all about what you have got in your life.   But is that what really matters?? 
At the end of the day - we ain't getting out this adventure called life alive no matter what way we look at it.  And in reality the only legacy we leave in this world is two things - the balance we have in the bank and the difference we have made. 

Personally I would much rather tick the second box.  You see my social enterprise will never give me a big bank balance.  My social enterprise wont have me rubbing shoulders with the elite in society.
But.. my social enterprise makes me rich in ways that I cannot even begin to describe. 

Every single day I meet people who inspire me.  People who are fighting battles, personally and professionally to make life better for those experiencing mental ill-health.  These people are strong, beautiful and inspiring.  They fill my heart and soul far more than any amount of money ever would.
They show me that amongst all the doom and gloom in the world - that there is hope.  That people care for each other.  And that people have the ability to make the difference that is needed in the world.

My social enterprise won't make me rich - but it will pay me enough to pay my bills.  I'm not going to pretend it isn't hard to look around me sometimes and think "I could/should be earning more".  There are days when I think - "what the hell am I doing???  Will I ever made a REAL difference in this whole mucked up world?? - what is the point in trying??"  But I would have those days anyway no matter what type of business I was running.

But with a social enterprise that is balanced out by far by the positives of the job.
I know that change happens one person, one attitude at a time - so I keep going.  And I am never far away from the next reminder of the difference I am making. 
So please - consider a social enterprise as a way of doing business - because doing good really does you good!!