A Poem For You

I have fallen in LOVE ❤ with an album of late, the band Refuge released there Album Allowd A Voice (link is to iTunes) back in October and I have been playing it ever since! Possibly what I like most about it is that the songs are jammed in-between poetry and today I am going to share one of the poems with you because I think its fab!

The Universal Disease By Jeannine Nield

Someone starving, bleeding, crying
Screaming, tortured, slowly dying
How do you feel when you see
These scenes of pain and misery?
A crippled man with sightless eyes
With him you surely sympathise

A women battered black and blue
No doubt receives your pity too
How good we are at sympathy
When pain and torture we can see

But What if tears are left uncried
And screams and anger locked inside
With memories of abuse and fear
And hopelessness year after year?
As a child I was neglected
Ridiculed, ignored, rejected
Sexually abused by Dad
Yet grew up thinking ‘I’ was bad

Despite this I did well at school
But still I suffered ridicule
With others I could not relate
And so turned inward all my hate
No confidence, no self esteem
To be accepted was my dream
Tried sex and drugs to fill the void
But there was nothing I enjoyed
Poured out my heart to my GP

Where upon he labelled me
And down my spine there went a chill
As he pronounced me ‘MENTALLY ILL’

The fact that I’ve a high IQ
And that I’m kind and loving too
And with great talent have been blessed
Means nothing – because I’m depressed!
Twice I’ve attempted suicide
It would be better if I’d died
Because I’m still ignored, rejected
Ridiculed, neglected

Many so called ‘normal folk’
Treat my illness as a joke
Full of anger, scorn and greed
They seem oblivious to my need
And yet it’s ‘normal’ types like these
That fuel the fire of my disease
But I would rather be like me
And try to live in harmony
Than have a heart that’s full of hate
And skin as thick as armour-plate

You could help me to get well
To climb out of this living hell
Offer me a helping hand
Show me that you understand
Put away your needless fears
And all your preconceived ideas

‘MENTALLY ILL’ is just a label
Yes – I’m insecure, unstable
But if you’d lived my life instead
You, too, would be depressed – or dead!

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Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

BBC News – GPs access to depression treatment ‘is too narrow’

BBC News – GPs access to depression treatment ‘is too narrow’.

This is not really a surprise or a shock to read in some areas there are 6 month waiting lists just for a 6 week course of counselling! As a result drugs such as anti-depressantws are often used to fill the stop gap in treatment, while a patient waits for some other form of therapy.

BBC NEWS | Health | ‘No shows’ cost the NHS millions

BBC NEWS | Health | ‘No shows’ cost the NHS millions.

I had to write about this purely because I have had a very bad experience or two.

For example I once received an eye appointment for the same day at two o’clock, three o’clock and four o’clock they all arrived in the post on the same day in three separate envelopes, I had to phone up to try and establish what the hell was going on.

Another time I got sent an appointment at 9 am on a Saturday morning and another one for the Tuesday only a few days later both in the same envelope, I phoned (again) to check this was correct and was told that yes it was right. I turned up on the Saturday and know one could quite work out why I was there, my consultant was not even in and the doctor actually apologised for the ‘error’ even though it was not her fault!

Then there is the local podiatry service who ring me up less than 30 minutes before my appointment to cancel it, when I am already sat on the bus on my way, they have done this twice now.

Oh and then there is the time said podiatry administrator rang me when I was in town to tell me about a change in my appointment, with bags of food shopping, heavy rucksack, guide dog, wearing my non-prescription sunglasses and balancing the phone on my shoulder. She babbled possible appoinment times at me I said I did not have my diary out or a pen so I did not know when I was free and could not write it down.  She said I had to pick one,I said any.

She read the time and day out again  and I said could you email me that please, she said no.

I asked if  she could send me a letter in large print, she said no.

I asked if I could have a letter in standard print, she said no.

I asked if she could phone me back in 30 minutes she said no.

I asked if she could phone me back straight away and leave me a voice mail with the info, she said no, (abruptly).

I pointed out once again that I could not write it down, due to the fact that in those moments stood there in the sun I was blind, she said I should write it down told me when it was one more time and hung up!

Unfortunately this is just a brief outline of the experiences I have had in Southampton when trying to sort out hospital/doctors appointments, I have spent over a year attempting to get my appointments from the eye unit sent to me in large print without success, it’s the EYE UNIT!

Don’t get me wrong I think the NHS is great heck I get enough out of it, but my point is that it is no wonder people miss appoinmtnents with administration systems like the ones near me!

BBC NEWS | Health | System ‘failing autistic adults’

BBC NEWS | Health | System ‘failing autistic adults’.

It’s sad but a very true story that many people are struggling to live with autistic spectrum disorders they don’t know they have.

I personally have a friend who has recently found out that 10 years ago she was wrongly diognosed with Bipolar disorder and placed on a cocktail of drugs to ‘normalise’ her moods. This combination of drugs taken for so long has damaged her body to the point where she had to stop taking them (fully supported by a mental health team and her family).

Since coming off the medication she has been diagnosed as having Asperges and it is very unlikely she ever had Bipolar disorder!

Happy BADD – Lets all be positive about disability

As you should know by now if you read this on a regular basis today it is Blogging Against Disableism Day, clicking on the BADD banner on the right will take you straight through to the hub and I would recommend it.

If I am completely honest I didn’t know what to write about for todays BADD. I was going to write something positive about the things I am proud of as a disabled person, not in a everyone smile and cheer at the poor little disabled person getting on with there every day lives but looking at the positive things we as disabled people bring to our communities and on a wider level society.

To oftern the media focus on the negatives of disability or use a patronising tone, unfortunatly this negativity oftern extends to the genral public or even worse service providers. Today at work I was asked to put our this statement on to our jobs database, written by the charity themselves

” Transport is a particular problem for people who are blind and partially sighted. Fear and uncertainty of how to get to their destination, often preventing people from going out altogether, which then can lead to isolation and depression.”

So this add would leave every person that reads it to believe that every blind and partially sighted person in the country feels isolated, scared to leave there own home and depressed. Not just that but its not exactly well written anyway is it? I’m not one to talk about grammar but its just not right in lots of ways. I know that there are pleanty of VI people up an down the contry who live happy contented and actives lives

So why am I not writing about the positives then? (and this is where it gets ironic) Today I have had a very bad day with all my impairments, my shoulder was very painful this morning which made me late, my eye has been playing up all day and you know what I am just having a bad day with my depression, I tried to book an appointment to see my GP today and was told that there where no appointments on the system yet so I would have to ring back and can’t be seen till June.

So basically whatever I wrote today would be utter shit, I have been trying to write something good for BADD all day, but today I just can’t.

Suicides ‘unchanged by pill ban’

BBC NEWS | Health | Suicides ‘unchanged by pill ban’.

 

The above article is very interesting, I have known many people under the age of 18 who have sturggled to cope with depression and other mental health condtions who have simply been turned away when attempting to get help thanks to a reluctancese to perscribe any treatment.

Drugs are not allways the answer but in many areas of the UK there is a very long wait for non emergancy mental health care, in Gosport I spent almost a year on a waiting list for counselling!

So if GP’s can’t prescribe antidepressant medications to under 18’s and waiting lists are huge what are young people supposed to do?