Becoming Independent Again

I have recently been discharged from hospital after breaking my hip and femur.  A day, which I had been longing for; however, the discharge came with conditions such as having physiotherapy at home, visits from my Occupational Therapist, scans and X-Rays, blood tests, seeing my Doctor more in the last two weeks than I have seen her in the last two years and having a carer.

MM900283638

Very few things are as humbling as having to have a carer.  It is a time when you must admit to yourself that you can no longer cook your own meals, take a shower, make the bed or even dress without help and someone there to make sure that you that you do not fall or hurt yourself.  For me it has also been a very positive experience, I am fortunate enough to know that with grit and determination that I can become independent again, I am one of the lucky ones; there are many more discharged from hospital after an accident or severe illness that will never be able to be independent again.

I live alone, and enjoy living alone; it came as very strange experience when I had to let a stranger into my home twice a day to take care of me.  The carers are very cheerful pleasant people; they are understanding and possess that most important gift: the one of empathy.  Although, there is one that is not quite as understanding and as empathic as she could be; but she is the exception rather than the rule.

Immediately after my discharge, my day would begin with my carer arriving at about eight-thirty in the morning.  However, because it takes me a long time to get moving I get up at about seven-thirty so that I am reasonably mobile when the carer arrives.  The carer would then help me with my shower, make the bed, prepare my lunch, make sure that I had breakfast, make me a cup of tea, have a chat and if my waste bin was full, take the rubbish out.  The chat was and is very important; it helps to maintain my need for communication with the outside world.  That said, I have some very good friends who either visit or meet me for a coffee or a pint; they may not realise it, but their friendship is a major factor and driving force in my recovery process.  I count myself as very lucky to have such good friends!

In the evening my carer would return and prepare my evening meal and check on how I was, I no longer have an evening carer I prepare my own meals, to be honest I was fed up with microwave meals and scrambled egg on toast.  The time in between my carers visits, or as it is now, after my carers visit, is not empty time, far from it.  I have a whole series of exercises to do throughout the day; these are mainly to help me regain the flexibility and strength in my leg, I must also go for increasingly longer walks each day, now with crutches, later with sticks.  Since the operation, I have had Oedema in my right leg; that is why I wear a slipper on my right foot.  In the morning, I go for a walk, after which, I must sit down with my foot up for two hours to reduce the swelling, which can be painful.  In the afternoon, I again have to sit down with my foot up for one hour, after a shorter walk plus exercises.  It may sound boring to you, to have to keep doing the same thing each day; but it is far from it.  I can see and feel the progress I am making, because I walk a little further a little faster, my leg is getting stronger and suppler, therefore each day I achieve a little more, knowing this, almost forces me to try harder.  I know now that I will become independent again, sooner rather than later: even though my recovery has, been hindered by an infection in my leg, the infection is now slowly disappearing.

Because of the exercises and walking there have been several major achievements such as; preparing and cooking my own meals from scratch, putting my socks on without help, having enough confidence to shower and even changing my bed, although I must admit this was very painful, and I had to take a break halfway through.  It is strange that such mundane tasks and actions can become so important.

There is an old adage, which says, “There is no gain without pain”, and this very true as far as my rehabilitation goes.  So far, I have graduated downwards from, near agony – to incredible pain – to severe pain, my next level is pain followed by ache et al, until there is no pain at all.  All I will have to deal with then will be having one leg shorter than the other, regaining the ability to drive my car and phasing back into work.  Then Bingo, I am there!

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Dem Bones – dem dry bones

The thighbone’s connected to the hipbone…

Wednesday 16th January 2013, 160th Birthday of André Michelin, famous for his design and production of car tyres. If I had been wearing a Michelin man suit that day, I would not have ended up in Gould Ward, Musgrove Park Hospital.michelin-man 2

I had been out of the office in the morning, and asked a friend to get me a sandwich; I got back to the office at about ten-to-two. This is when things started to go pear-shaped; while paying Andy what I owed him I dropped a pound coin onto my foot, instead of bending over to pick it up, I lifted my foot to retrieve the coin. As I lifted my foot I fell over with my right leg bent and landing on my right hip; breaking both, my right-femur and hip in the process. If I had been wearing one of André M’s suits I would have bounced back with no damage!
So there I was, lying flat on my back with a right leg that had apparently shrunk by an inch or two. Dave called the ambulance and then passed the phone to Andy, who relayed a load of questions such as; in what direction was my foot pointing; how could I tell them what direction my foot was pointing, I was looking at the ceiling, and could not even see my bloody foot! How was I feeling? I wanted to be unconscious so that I could escape the pain. Could I move my leg? Of course, I could not move my leg; I had just heard and felt my hip and femur break.
On my journey to A&E, I was given Entonox by the ambulance men, without it, that journey would have been impossible. On a pain scale of 1 to 10, mine was easily 100!

The staff of A&E were fantastic; I was treated care, consideration and respect from the moment I arrived to the time when I transferred to Gould Ward. They did everything humanly possible to minimise my pain and discomfort: one of the doctors showed me an X-Ray of my hip (when I saw the X-Ray I could understand why I was in so much pain), and explained what I had done, then told me the ways in which it could be fixed. Which very briefly were: a hip replacement, half-hip replacement or something called a Gamma Nail with possible plate. The nurse, Claire, who I cannot praise highly enough for her care, then talked me through what would happen next and the most likely of the three options, the Gamma Nail. Then it was time to move to Gould Ward, where Claire introduced me to Emma, the Staff Nurse on, Gould Ward, which would be my home for the next two weeks.
Initially I was in A-Bay, bed four, my reference number was therefore A4, the Doctors always referred to me as A4 or Mr Rugg, whereas, the nurses and Health Care Assistants always called me Chris; even when talking to the Doctors. When my brother, Simon, came into see me that evening the very first thing I asked for were my pyjamas; I was dressed in one of those atrocious hospital gowns that tie-up at the back and leave your bum bare – horrible! My first night was one of pain – Morphine, excruciating pain – more Morphine.

Morning finally arrives as does the time for my operation. I was given my anaesthetic and when asked to count from one to ten I do not think I got past the W- in one. They had decided on the Gamma-Nail, those of you who are squeamish please look away now…

A Gamma-Nail is a very long Titanium nail, in my case almost 14 inches, which the surgeon hammers down the centre of your femur until it almost, but not quite reaches the knee. This is held in place by a number of screws, which are screwed horizontally through the femur. I have two near the knee and one, half way down my femur; it also has a screw going down through the top of the femur to the head of the nail, this ensures that the nail is vertically secure. Next, the surgeon has to fix the break by pulling the bone from the ball-joint tightly against the top of the broken femur, so that the two broken parts can grow back into one complete femur again. This is done by using a bolt somewhat similar to those used for fixing shelves etc. to hollow or plasterboard walls. The bolt has a head, which opens up, and the more he tightens the bolt, the tighter it gets against the bone in the ball section and pulls the two pieces together ensuring that the bone mends and knits together. It is all very clever really. The final addition was to use 44 staples to close the three incisions, which had been made in my leg. See simplified diagram of Gamma-Nail operation:

Gamma Nail Diagram

…Okay, those of you who are squeamish can look back now.

After the operation for some reason, I did not have those feelings of nausea and general malaise that are normally associated with waking from a general anaesthetic. I just felt tired, pleasantly relaxed and pain-free I found out later that the ‘pain-free’ part would not last for very long. While I was in this almost euphoric state a good friend came in to see me, I could see by the look on her face how surprised she was at how well I looked and sounded. I just could not stop talking, I felt so cheerful and well; I must apologise to my friend for hardly allowing her to get a word in edgeways I realise now that I was on an anaesthetic high, a superb and marvellous feeling, that, like so many good things, was unfortunately doomed to be short-lived.

Be warned there is more to follow.

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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.

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Communication, or Lack of Communication?

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.


Posted in Benefits, Communication, Conversation, Depression, Disablement, Discrimination, Fatigue, Hope, Judgement, Lack of research, Living, Mental Health, Mental Health First Aid, mental illness, Prejudice, Stigma, Talking, Uncategorized | Tagged , , , , | Leave a comment

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 16th 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

Posted in Arachnoid Cysts, Depression, Disablement, Discrimination, Epilepsy, Fatigue, Fun things to do, Hope, Lack of research, Living, Mental Health, mental health poetry, Patient poetry, Poetry, Prejudice, Stigma, Sunny Afternoon, Talking, Uncategorized, Walk n Wheel, Walking | Tagged , , , , , , , , , , | 1 Comment

Arachnoid Cyst Walk n Wheel UK 2011

Saturday 16th 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 16th 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

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‘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

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