Hardest Hit March, Bristol, 22nd October 2011

Bethan and I bearing the Mind banner

We were there to represent Mind in Taunton and West Somerset and Advocacy in Mind, there were groups from many other charities there including Taunton and district Citizens Advice Bureau, Rethink Mental Illness. Bristol and many others.  There were also hundreds of people representing themselves.  As well as carers and families who were representing those who are too disabled to be there themselves.

Why were we marching?  Because the coalition government is targeting disabled people in

CAB Contingent from Taunton

its welfare reform bill, which is passing through the House of Lords now, this is after, George Osborne said he would ‘place the burden on those with the broadest shoulders’.  How can this be true?  The proposed cuts in benefits are going to lead to many thousands living from hand to mouth and many will be made prisoners in their own homes by the recommended changes to the Disability Living Allowance.

Another effect of the welfare reform bill, which the government seem to have conveniently forgotten or ignored, is the likely result of the financial hardship, which they are imposing on an already anxious minority group.  This will be a dramatic increase in clinical depression, anxiety and stress, thereby increasing the pressure on our already overstretched mental health services and charities.

We had representatives of numerous types of disability from the very visible to the invisible, although our disabilities are different; we all have at least two things in common.  These are the continuing and constant cuts, and threats from the government.  The protesters came from all around the South-West, not only Bristol, there were people from Somerset, Avon, Devon, Gloucestershire, Wiltshire and Dorset, and probably even further.  Many made a long, arduous and sometimes painful journey to demonstrate and voice their anger in a peaceful way.

In many ways the pain that so many were willing to endure on their way to the march, during the march, and going home after the march: gives the Hardest Hit March even more meaning and impact.  Of course, even though you and I can see this: this government is totally bereft of understanding and empathy when it comes to the pain and suffering of disabled people, this thought will not even cross their minds, and they will not give a jot about the predicament into which they are forcing disabled people.

Any political opinions or comments in this blog are my own and are not necessarily those of Mind in Taunton and West Somerset, National Mind or any other charity I have mentioned.

Communication, or Lack of Communication?

Communication is recognised as an essential human need and, therefore, as a basic human right. Without it, no individual or community can exist, or prosper. We all communicate every day, for the majority of us our main means of communication is the spoken and written word. Last October the government decided to make 2011, The Year of Communication, the name of the project is Hello, and mainly targets children and young people, there is very little for adults. Considering that there are over Twelve Million adults with literacy and communication problems in the United Kingdom (National Literacy Trust 2008), the remit of Hello is far too narrow, and the government were very short sighted when setting the parameters for this project.

I work as a volunteer mental health advocate and my job is to help empower people who have mental health issues to self-advocate, and to help them have their voice heard where they have previously been ignored. Many of my advocacy partners, (a client is known as an Advocacy Partner (AP) because we work together to resolve their issues), feel ignored by public officials, doctors, psychiatrists and a whole host of other individuals and authorities: whose rulings and diagnoses have a very real effect on their lives.

Recently someone said to me ‘I wouldn’t have thought that a person with mental health issues had the aptitude for logical or rational thought’, this comment highlights the stereotypical image, which a very large number of the population have of those of us with mental health issues, and our ability to communicate. It is both an acquired and inherent form of discrimination. This is so ingrained, that it comes as second nature to those who are guilty of it. Unfortunately, this attitude is encountered in every part of the benefits, tax and health systems where far too many have forgotten how, are unable, are in too much of a hurry or too impatient to listen. If no one listens to what is being said, then there is no communication.

The majority of benefit claim forms (ESA, DLA etc.) pay very little regard to the fact that a person can be disabled by a mental illness, instead they concentrate on physical disability. Of course, physical disability should be taken into account but the benefit agencies must make sure that every disability whether caused by a physical or mental illness is regarded as being equally severe, if they do not, then they are plainly guilty of discrimination against those with a mental illness. When filling in the forms APs see the scant attention paid to mental illness and begin to feel depressed and ignored before the Decision Maker reaches a decision. A title that conjures up images of the Fat Controller from Thomas the Tank Engine. It is time that those who write the explanatory notes and leaflets, which accompany claim forms, just as those who set the questions on these forms, were both made to consider carefully what messages they are sending to the claimant with their notes, leaflets and questions. As well as the effect those messages, and the manner in which they are written, might have on the claimant.

After the forms come the medical examinations bringing yet more stress and anxiety. Medical examinations such as the Work Capability Assessment (WCA) are more like interrogations during which the claimant is subject to rapid-fire repetitive questions. As an advocate, I have attended WCAs with some of my APs, and on occasions have had to ask for a break to enable the AP to regain their composure. There are questions such as ‘How long can you sit before it becomes uncomfortable, and you have to move?’ followed later by ‘Do you enjoy watching films on television?’ If the claimant says ‘Yes I enjoy watching films, but have to record them, so that I can take a break, because I can only concentrate for a short time’, or ‘Yes, but I have to stand up to watch television’. They are told ‘I only need to know if you enjoy watching films.’ Perhaps it is the cynic in me, but the question about films appears to be another way of finding how long a claimant can sit. The problem is that the question is based on the premise that everyone watches an entire film in one session and that everyone sits down to watch television. This is just one example of a claimant not being allowed to communicate with their examiner or put another way, of not being listened to by the examiner. It would appear that unless an answer fits the relevant ‘box’ on the list of questions, used by the ‘Atos’ examiners, then the answer is unacceptable.

Until all those who have direct, or indirect contact with claimants, are given Mental Health  First Aid training with a compulsory refresher each year, and the claim forms are radically revised, to make them inclusive of mental health issues and mental illness. Then, the current obstacles and barriers to those with mental health issues will remain, meaning that more and more people who may appear to be physically ‘fit for work’ will be forced to try to work, while they remain mentally unfit to do so.

Arachnoid Cyst Awareness Wheel n Walk UK 2011 – Outcome

The Arachnoid Cyst Awareness Wheel n Walk 2011 UK, held in Olney, Buckinghamshire, was a fantastic day, which had not only a marvellous atmosphere, but also a genuine feeling of camaraderie. We laughed and sometimes cried together, as new and enduring friendships were made. On top of all that we raised money, through sponsorships, which will be used to help those who have Arachnoid Cysts and the many associated symptoms, illnesses and conditions that go with them. Thank you Dia for arranging such a wonderful day.

A couple of years ago I wrote a poem called ‘I’m Fine’, it was about Clinical Depression. Before, during and after our walk on the 16^th April, through talking with fellow walkers, I realised that ‘I’m Fine’ described what is felt by those of us with an Arachnoid Cyst, as well as Clinical Depression. So I wrote another verse and revised the poem so that the focus is now on Arachnoid Cysts. OK, I know that it is not a happy poem, but I hope you like it.

‘I’m Fine’ or ‘As Others See Us’

Hello Chris you’re looking well, I thought you were ill!

Look into my eyes; see the countless private tears they have wept

See the overwhelming weariness, which makes my body ache

See the sleepless nights too many to remember

See the turmoil and pain which is my mind

Feel too proud to show the hurt; too proud to stop and rest

Feel ashamed that what you once, could! You can no longer do!

Feel the fear of letting others down

Feel the want; the desperate need to be believed

Feel the moods so dark, so powerful they have substance

Feel the weight of thoughts so heavy they cannot move

Feel the blameless guilt and shame so undeniable

I want to shout SORRY‼ For what I don’t know

All of these hidden behind a thin veneer

A veneer of false happiness and well-being

These and so much more

Just the tip of the iceberg that is the Arachnoid Cyst

Should I say? No, I’d better not.

Thank you, yes, I’m fine, how are you?

Chris Rugg

April 2011

Arachnoid Cyst Walk n Wheel UK 2011

Saturday 16^th April is a very special day to all of us in the United Kingdom who have an Arachnoid Cyst; it is also a very special day to all of our friends and families.  Why is it so special?  Because the 16^th April is the date on which the first ever major walk or demonstration to raise Arachnoid Cyst Awareness in the UK, will take place; those of us with ACs,  are trying to raise awareness within the medical profession, and general public; that we are not hypochondriacs or people with vivid imaginations.  We are just ordinary people, trying to lead ordinary lives, with the very real pain and problems caused by ACs.

Why are we demonstrating?  Because the majority of neurologists and neurosurgeons we meet regard ACs as benign malformations not worth bothering with.  An example of this was my first AC, which was first seen in X-rays taken when I was thirteen, then seen again in scans when I was twenty-nine, but not diagnosed until I was thirty-seven when I had a shunt, which did not work.   I know this because at that time I had a very good neurologist who had been researching the history of my epilepsy and found notes on the AC, being a very open man he told me what he had found.  I now have a second AC.

Apart from epilepsy ACs can be responsible for a whole host of other symptoms, conditions and illnesses, such as ME, migraine, loss of limb coordination, disturbed balance, disturbed vision, persistent headaches and tiredness and the list goes on.

That’s the serious facts out of the way.  Now let us get on with the fun facts, like walking, taking part, sponsorship. As well as where to stay should you decide to take part.  Walking, the walk will start in Olney, near Milton Keynes, then go on to Emberton Park, a beautiful place, as you will see if you click the link.  Dog owners do not fret, dogs are welcome, and you can even get ‘Walk‘ n ’Wheel’ T-shirts for them.  And don’t worry about getting fit it’s only a two mile walk, which even I, with help from my walking stick can manage.  Although, if you are feeling really fit you could always go round twice!

Taking part, for those of you who live in the Taunton area I realise that it is a fair drive to Olney, but if any of you fancy a weekend away; it is a lovely part of Buckinghamshire; think about it.  You will be made very welcome.  If anyone who lives nearer would like to take the dog for a walk somewhere different, and help to raise money for a ‘not for profit’ organisation and cause, at the same time.  Then please sign up.  Would those wishing to register for the ‘Walk’ n ‘Wheel’ please click on the following link ‘Walk’ and ‘Wheel’ UK 2011.

If any of my friends can spare a  ‘couple of bob’ to sponsor me please click on Sponsor Chris, if you do sponsor me would you please put my name in the message box, thank you for your sponsorship.

Where to stay, if you would like to stay overnight you have a choice of the following:

The campsite Emberton Park

The Old Dairy

The Queen Hotel

If you think it is wrong of me to ask for sponsorship via a blog, then I apologise to you.  However, to me the Arachnoid Cyst Awareness Organisation is a cause very close to my heart, because without them, my voice would be one voice and very hard to hear over all the other voices.  But with them, my voice is one of many voices carrying the same message, and is therefore more likely to be heard.

If any of you out there have an AC or have a friend or relative who has one, then please come and join us.

Chris Rugg

‘Knowing’ and ‘The Law of Sod’

Two of my poems (I hesitate to call them that, but I’ve been told that’s what they are) in the first I try to describe the beliefs and feelings instilled by the continuous, rapid fire and chaotic thoughts which, so many with clinical depression experience.  The second, a more light hearted observation on one of our most encountered ‘laws’, The Law of Sod.  Both of these poems describe feelings mentioned in my first blog Vinegar .

KNOWING

Irrational, untouchable thoughts overwhelm my mind
Electric sparks, bolts of lightning, claps of thunder
Vainly I try to hold them
As if ‘That’ were a reality.
The source
Within me:
Will not be stemmed.

Surrounded by friends and family
Faces laughing, smiling
Crying,
Full of purpose.
Knowing where they are going
Knowing where they are

I am in isolation, in solitude,
Imposed by fear…….
Fear of contact,
Fear of being judged.
Solitude a fleeting comfort
Prelude to desire for company
Prelude to desire for solitude

The desire to be as I was
HOW, I do not know
Knowing that once I was.
Now, I am not
The thoughts are back
I cannot think any more.

Chris Rugg

November 2010

THE LAW OF SOD

I need to talk, not text talk, not cyber talk, not telephone talk, but face-to-face talk,
I need to feel the presence, hear the reply, to sense the mood,
I need to see the eyes, the lips, the face, hands and body talk,
Then why today of all days is there no one, not a soul to talk to‼

Why? Because family, friends and confidantes live their own lives,
They are planets in my universe, as I am but one planet in theirs,
So, until our orbits coincide, I shall have to wait,
Oh, Bugger!  That bloody damnable Law of Sod‼

Chris Rugg

November 2008

Feature photograph by Fotolia

 

The Value of Friendship

Friendship is a strange and mysterious mutual feeling of trust, support and affection between two people, you cannot see it; yet you can perceive it, you cannot touch it; yet you can feel it, you cannot hear it; yet you can sense it.  It is as essential to our wellbeing as breathing; it is a natural selective bond which forms and grows with some of the people we meet, but by no means all.  It is certainly as strong as love and is very often stronger.  It is a gift which cannot be valued too highly.

Depression, the clinical kind, is a mental disorder which affects many millions of people of every race, class and religion; no one is immune from it.  For those affected, depression has an absolutely devastating effect, on not only their lives but on the lives of their families and loved ones.  It is also life threatening and the feeling of failure after an unsuccessful suicide attempt is inexpressible

Like many life changing events depression acts as a ‘filter of friends’, it is only when you are really ill or in need that you find out who your true friends are if indeed any!  It will be found that many people regarded as friends slowly drift away until they are seen no more, this has much to do with the stigma associated with mental illness, and the stereotypical image of mental illness.  In the end there are few very good friends left and because of the depression, and the fact that they are good friends, you deliberately see them less and less trying not to be a burden on them, eventually they feel shunned and drift away.

As stated earlier on, friendship is essential to our being, so even though depressed new friendships begin to form, many of them are with others who have or have had mental health problems.  These are not temporary friendships or friendships of convenience, they are deep meaningful friendships which will last a lifetime, no matter what happens.  These are friendships born out of shared experience and a mutual willingness to help one another get through the bad times, no matter how hard things may be.

This gift of friendship is an essential ingredient in the treatment of all kinds of mental disorder, not only depression.  Although I am not a believer in the current buzz-word ‘recovery’ when applied to depression, I do believe that friendship gives the ability and will to lead a more open and balanced life.  And if, as is often the case you slide back into another episode of depression, you know that your new found friends are there and that they will do all they can to help you.

Photographs and Picture by Microsoft and iStockPhoto.

They may be rare, but they still hurt.

The extract shown below is the comment I wrote on the Arachnoid Cyst Awareness Petition to the World Health Organisation asking for Arachnoid Cysts to be recognised as a genuine and serious painful medical condition, which can, and often does, lead to permanent disablement.  The petition was presented to them in April of this year; as far as I am aware, there has been no response from the World Health Organisation yet.  But I suppose that, like test results, these things take time.

# 157

Name: Chris Rugg on Jan 27, 2010

Location: Taunton, Somerset, UK

Comments: I had a shunt for an arachnoid cyst on my left frontal lobe in 1987. Now 23 years on I still have a cyst on my left frontal lobe. Neurologists do not seem to believe that the pain, tiredness and general malaise which often affect me, can be caused by an arachnoid cyst. I am also an epileptic and even though this is controlled I am convinced that the root cause is the cyst. It is time that the medical professions of all countries recognised the arachnoid cyst for what it is. A serious illness!

If you would care to listen to the letter the ACA sent to the WHO please click on the link below.

Arachnoid Cyst Petition

A large number of those with arachnoid cysts also have associated conditions, syndromes or illnesses such as epilepsy, hydrocephalus (water on the brain), chronic fatigue syndrome, ataxia (gradual loss of coordination affecting the ability to walk), disturbed sense of balance……….. I could go on and on, but I do find lists somewhat boring.  Suffice it to say that the cyst does not come alone.

In the time since my second AC was finally diagnosed I have been given many ‘reassurances’ by neurologists here are just three; ‘it’s only a cyst’, ‘It’s all in your mind’, ‘I know that! I’ve seen the MRI scans’, and last but not least ‘It’s OK your cyst is benign.’ How can something which is getting larger every day, taking space which is meant for my brain be regarded as nonthreatening, I was told this at the same time as I was told my cyst is inoperable.

I have three reasons for writing this short blog:

i.        To try and raise awareness of Arachnoid Cysts.

ii.        To emphasise how little the medical profession know (or want to know) about them.

iii.        And last but by no means least, to congratulate and thank Dia DiCristino for founding Arachnoid Cyst Awareness and keeping it going over the years.  And for making the first ACA Conference on 6th November in Philadelphia a reality, I will be watching on Skype.  Get well soon Dia.