For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.

 

A little consideration for the disabled goes a long way

When you are disabled life already gives you a plenty of challenges and problems, the last thing disabled people need is others making life even more tricky.  These issues may seem trivial to some, but to the disabled they affect they are very important.

 

Misusing a disabled parking badge

A blue badge is issued to disabled people who can not walk far or find it painful.  However some people seem to think that it is issued to the vehicle not the person, so feel free to use it when the disabled person is not even with them, but this is actually illegal.  The idea is that the disabled person can take the badge with them in any vehicle they get a lift in, not that the entire family can use it.  The other excuse disabled people have pointed out in a Facebook group for disabled parking badge abuse is when a carer says they are shopping on behalf of the disabled person.  If the disabled person is not with them, they can not use the badge and it makes no difference why they are shopping.  Also the disabled person does not just have to be in the car, but getting out and going somewhere.  The badge is to help disabled people get out more, not to sit back and watch others have the life for them.

 

Using a disabled parking space without having a blue badge

Then there are those who use disabled spaces without even having a badge at all.  There are only a few disabled spaces in a car park and if they are all taken up it can prevent a disabled person from being able to park and they could miss out on doing what they wanted.  The excuse, ‘I am only going to be a minuet’ is not valid, what you are doing could end up taking longer than intended or just happen to be the  minuet a disabled person arrives.

 

Parking in front of a drop down curb or on the pavement

Drop down curbs on pavements are put in to help people cross the road.  Whilst most people could walk around a car parked in front of a drop down curb, a lot of disabled people can not.  The disabled person would have to go back to the last drop down curb, which could be a very long way back and in some cases there is only one drop down curb on and off the entire pavement.  On the road where I live there seems to be a lot of parking half on the pavement, with no room at all to get past the car unless you walk onto the road, which is not only unsafe, but impossible for some.  I do realise that sometimes there is not much parking space and it is the only option, but even so I often see cases when the car could have been parked with more space left on the pavement to get past.

 

Businesses using disabled toilets for storage or blocking access

If a disabled person can not use the toilet whilst they are in a restaurant, café or place of business they are highly unlikely to give the place repeat custom and may have to leave early and go elsewhere.  I have come across disabled toilets used to store cleaning equipment and empty bar kegs.  Whilst I could still get to the toilet, I doubt that some people with large wheelchairs or walking frames could have.  A person in a wheelchair may need turning space, which can be tricky if there is other stuff in the way.  Even worse is when you can not even get to the disabled toilet because access is blocked.  I was once seated in a pub restaurant at a table right in front of the disabled toilet.  For someone to use the toilet we would have had to shift the table to the side and stand up and wait.  They had crammed far too many tables into the place anyway and it just made for a loud, unpleasant atmosphere.

 

Poorly designed disabled toilets

A good disabled toilet design should take into account the fact that not all users will be wheelchair bound and that not all wheelchair users are in the same situation.  I used to use crutches and the disabled toilet was easier as it had more space for them and after my hip replacement I found rails helpful to sit down and get up again.  However the sink in a disabled toilet is often lower than normal with the thinking that wheelchair users are lower down, while this is often true, for those who use other walking aids this is actually not helpful as bending can be tricky.  The best solution I have seen to this is in some Costa Coffee branches that have both a sink at average height and another one at a slightly lower height.  Although in one branch the soap dispenser was only reachable for the higher sink user and for those who could not reach up they would have had to go without.  Another problem is when the toilet is too small for the user to turnaround in a wheelchair, forcing them to reverse out which can make opening the door tricky and has the risk of bumping into someone.  Plus some disabled people need to go with someone for help and this is tricky if the toilet is small.  Quite often the baby changing facilities are put in the disabled toilet, which I can understand as it has more room, but if the changing table does not fold against the wall it can just get in the way.

 

Shops that cram in too many rails or display units

As the expression goes ‘pile them high, sell them cheep’.  I do love those bargain discount stores, but they do like to pile things to the point there is not much floor space left.  If I have trouble walking through some of them without a walking aid; imagine trying to get through in a wheelchair.  Cheep clothing stores often cram in so many clothing rails there is not room to get a wheelchair through or the chair knocks half the clothing off the rails as it goes.  Knocking things off can be embarrassing and bending down to pick them up can be tricky for some.  If you do not make a shop floor plan with the disabled in mind not only could you lose customers, but you could damage or dirty stock as disabled people try to get through.

 

Shops with heavy or awkward doors

A lot of disabled people rely on automatic doors.  Whilst some can get through pushing the door open using their wheelchair, if the door opens towards them this is not possible and it is not possible in either direction with crutches.  It is understandable that some smaller independent shops do not have automatic doors as they cost a lot to install, but bigger stores should have them.  If it is not possible to have automatic doors, using doors that are not too heavy or stiff will at least help some.

 

Poor disabled entrances to buildings

When the disabled entrance to a building is around the back or side it can be annoying.  Once on a college trip to a museum with several disabled people on the course we had to enter through a side door.  The door took a while to find as it was rather hidden, then we had to ring a bell and wait for someone to come and let us in, which seemed to take several minuets.  We had to go through a fairly dark corridor somewhere in the museum that was clearly not generally public access and then we came out in the middle of the museum no where near the main entrance, which if you wanted to go to reception left you with something of a trek.  It felt somewhat like using the servants’ entrance to a grand house, rather embarrassing.  I understand that sometimes it can be very costly to change a building entrance and some listed buildings may not allow any change.  However when possible it is always best to make the main entrance assessable to all.  The best idea is to put a ramp to the side of the main steps.  I have also seen a small lift solution used when it is not possible to have a ramp.  If you can not make the main entrance wheelchair assessable at least add a rail so as many people as possible can use the steps.  Then have decent signage to the disabled entrance, or you could lose visitors or customers who give up on finding the way in.

 

Cafes with joined together tables and chairs

Mostly seen in the greasy spoon type cafés, these tables and chairs come as one joined together.  Climbing over the bar to sit down can be tricky for some, even if they can walk.  I used to find it hard myself due to a hip disability.  The seats cannot be moved for wheelchair users to pull up to the table, and although they can sit at a table end, two wheelchair users can not sit together at the same table if they wanted.

 

Benches left broken long term

Not all disabled people use wheelchairs; I used to use crutches or no walking aid at all before that.  However I could not walk very far before I got pain in my bad hip.  When having a day out I would need to sit down now and then to rest.  A lot of places have a good number of benches which really come in handy for this.  What annoys me though is when you see benches that are left broken for a long time.  I have been to places which have caution tape over a broken bench, then gone back weeks or even months later to find it still exactly the same.  If it is a busy place this can be annoying when all the other benches are taken up or the next bench is not that near by.  I have also seen when a bench is no longer able to be repaired, the remains taken away and the bench just not replaced at all.  I get annoyed when a bench has clearly been broken by vandals, they have no idea how much a simple bench can mean to some people, making the difference between a good or bad outing.

 

Most of these issues can be solved simply, often by just having some consideration for others.  For businesses thinking about disabled customers using your building could actually increase custom and make you more money.  A lot of these things also can affect people with pushchairs or the elderly, so just think how many people you would be helping if you made some simple changes to your life.

Myths and Facts About Mental Health

 

Living in low support housing for those with various mental health issues and dealing with my own issues I know a lot of the myths surrounding mental health are wrong.  This is my view on why some of those myths are wrong.

Myth: Only certain types of people experience mental health issues.

Fact: Anyone can experience them.  Although it is true that certain events or lifestyles can trigger mental health issues, for me this is not the case.  I come from a loving, stable family, and did not grow up with violence around me or major addiction issues in the family.  It could be that my problems are genetic, I have no idea.  I have met people from all kinds of backgrounds with mental health issues.

Myth: Mental Illness is not as bad as a physical one.

Fact: It can be just as bad as a physical illness, hence suicide and self-harm in some cases.  Mental health problems can sometimes lead to physical problems.  Such as eating disorders, not looking after themselves properly and smoking.

‘People with depression are twice as likely to smoke as other people. People with schizophrenia are three times as likely to smoke as other people.’ (Mental Health Foundation).

Myth: You can tell someone has a mental illness just by looking at them.

Fact: Often you will have no idea if someone has mental health issues or not.  People you work with, friends and even family may have issues you do not know about.  It is hard to know what is going on inside someone’s head.  However just because you cannot see the problem does not make it any less real for the person experiencing it.

Myth: People with mental health issues can snap out of it if they try hard enough.

Fact: If it was only that simple!  It is not being lazy or weak and it requires help to get better when really mentally ill.

Myth: People with mental health issues are usually violent and unpredictable.

Fact: According to Time to Change, a campaign to end mental health discrimination, more than one-third of the public believe that people with mental health problems are more likely to be violent.

‘Violent crime statistics tell a different story, though. One survey suggested that only 1% of victims of violent crime believed that the incident occurred because the offender had a mental illness.’ (BBC Future).

In fact according to various surveys mentally ill people are more likely to be victims of crime than perpetrators.

Myth: Mentally ill people need to be kept in hospital.

Fact: With treatment and support most mentally ill people live independent lives in the community.  Although I have been to hospital appointments for mental health help, I have never been hospitalised overnight for it.  Some people may need a stay in hospital, but this is much rarer than it used to be and often for very short periods of time.  There is no need for the confinement and isolation that was commonly used in the past.

Myth: Men with depression or anxiety are weak, lack masculinity and asking for help is an admission of defeat.

Fact: Asking for help makes you stronger, not weaker, it shows you are gaining strength and want to beat it, rather than let the anxiety win.  A strong man is honest with himself and others about it.

‘Anxiety has nothing to do with courage or character. Nothing at all.’ (The Mighty).

Myth: Children do not experience metal health problems.

Fact: Even very young children can show signs of mental health concerns.  I experienced mental health issues as a child.  Although not diagnosed till I was about twelve, I definitely showed signs of mental health issues way before that.  Sadly less than twenty percent of children and adolescents receive the help they need.

Myth: All young people go through ups and downs as party of puberty, it is nothing.

Fact: One in ten young people experience mental health issues.  As a teenager some people would say to me ‘most teenagers get angry from time to time’, but trust me I was more than your average teenage angry.  I think my problems may have been made worse by puberty at times, but I already had mental health issues before puberty hit, so it was clearly not just that.

Myth: A mental illness is the same as being learning disabled.

Fact: A mental illness has nothing to do with how smart someone is.  Steven Fry is known for being very smart, and he has bipolar disorder, which can cause huge mood swings.

I believe ignorance and fear keep mental health stigmatised.  If people understood what mental health really is and how it affects people it would be easier for some people to admit to having problems and to get help.  Those who can need to speak out about it so others can feel that it is not something to hide and be ashamed of.

References

http://www.mentalhealth.org.uk/a-to-z/physiucal-health-and-mental-health

http://www.bbc.com/future/story/20150723-the-myth-of-mental-illness-and-violance

Themighty.com/2015/07/loving-someone-with-anxiety-what-t0-know/

 

I Love the Internet

Artificiallyhip

I love the internet, personally I think this invention saved my life or at least saved my sanity to some extent. Some people might say I spend too long online staring at a screen, but it is where I feel most comfortable and can be the real me. It is thanks to the internet I gained more confidence in myself, having met others who also think and feel like I do. There are some websites I find particularly useful and use daily to help me cope with the stress of day to day life. There are also websites that I find helpful when needing advice on certain issues or doing research on a topic. These are some of the best websites I have found to help me with my issues and I hope maybe able to help some of you.

WWW.MIND.ORG.UK   images

Mind are a UK based mental health charity. They…

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I Love the Internet

I love the internet, personally I think this invention saved my life or at least saved my sanity to some extent. Some people might say I spend too long online staring at a screen, but it is where I feel most comfortable and can be the real me. It is thanks to the internet I gained more confidence in myself, having met others who also think and feel like I do. There are some websites I find particularly useful and use daily to help me cope with the stress of day to day life. There are also websites that I find helpful when needing advice on certain issues or doing research on a topic. These are some of the best websites I have found to help me with my issues and I hope maybe able to help some of you.

WWW.MIND.ORG.UK   images

Mind are a UK based mental health charity. They do a lot of good work offline too, but sadly not that near where I live, however the website has been helpful over the years for me. It is packed for of information and advice. I like the guides to types of mental health problems. You can look up mental health issues alphabetically for specific named illnesses or you can look up more general guides to various things. They give a thorough guide to each mental illness, in a very reader friendly way. They offer advice to both those with mental health issues and to those trying to support someone who is ill. The website has an interesting news section on the latest mental health issues. The site tells you about Minds latest campaigns on mental health issues and how you can support them. There is a guide to mental health in the work place with things for both employers and employees.

WWW.elefriends.org.uk  elefriends

Mind also have an online support group. A bit like a message board forum, Elefriends is a place I go when I feel I have no one else I can talk to and share my problems with. Like a Facebook status update, but without my family and friends on Facebook reading it. We can say whatever is worrying us, stressing us out or making our mental health worse. Everyone on the site has some experience of having mental health problems and can respond to your message. People can click ‘like’ if it is a positive message, ‘thinking of you’ if it sounds stressful and upsetting or ‘I hear you’ if you have also been in a similar situation and understand how they feel. People can also write a small message in return if they wish offering support or advice. Peer support for me is very helpful as these people have actually been in similar situations as me sometimes and can offer real life advice and not just some text book answer. Knowing that other people agree that my situation is upsetting makes me feel more justified in being upset. The site lets you make a small profile explaining more about yourself and your illness and you are given the option to add a photo should you wish. You can also private message other members. The site is run by Ele the Elephant who pops in now and then to keep an eye on things and monitor posts which is reassuring. Every couple of days or so Ele also leaves a message with advice or links to other things that may help.

WWW.7cupsoftea.com    elefriends

7 Cups of Tea is another online support group for those with mental health problems, but instead of being a message board, you can talk directly to other people either one on one or in chat rooms. The site has a number of chat rooms for various issues such as anxiety, depression, disability, LGBT and relationship support. I find the chat rooms very helpful as I can talk to others who understand some of what I am going though and I get an immediate response. I tend not to use the one on one chat as they have this set up as listeners who are people supposed to be neutral who listen to your problems and respond in a helpful way, but anyone seems to be able to become a listener and I am not sure I like the idea of talking to someone about my personal problems alone when they are not qualified in counselling or something. I like the idea of a group chat as you get more than one opinion on things and a range of support. The site also offers a few simple mindfulness exercises you can listen to when stressed and some self-help guides on various topics. It also has this slightly gimmicky growth path thing, where you build up your path each day the more you seek support from the site. I think the idea is that you build a support path a little each day in the time it would take to sit down and have a cup of tea.

WWW.benefitsandwork.co.uk   elefriends

Benefits and Work are an independent source for advice when claiming benefits. It aims to help disabled and sick people claim the benefits they are entitled to. The site has thorough guides to claiming employment and support allowance, personal independence payment and disability living allowance, plus a bit of information on a few other benefits as well. Not only do the guides tell you how to claim the benefits, but about medicals, how to appeal should you be turned down and any other information you may find useful as a claimant. The site also has the latest news on anything benefit related that may affect claimants. A lot of the information is free, although to access even more detailed guides you can sign up as a paying member.

WWW.nhs.uk/conditions

A handy guide to many common conditions and symptoms. You can look up an illness or disability in alphabetical order. It gives you a good introduction to what the condition is, symptoms, possible causes and treatments. You can also look things up via the symptoms checker which uses a human body to look up various body parts and typical problems that can occur to that part of the body. I often find it useful to confirm what I already suspected I may have or to check if I need to see a doctor about it.

Sometimes I find it best to just pick the various aspects of a website that are right for you, some pages on a site may be very helpful, whilst others may not fit your situation. I also think that using more than one site can be helpful to gain a range of ideas and opinions on something.

If you can think of other websites that you find helpful please feel free to share them here in the comments.

Party Season

A short mini blog, a song that I have been working on in my head this week for the Christmas season

(To the tune of O0m-pah-pah from Oliver)

‘Tis the party season
Or so they always tell us
But where are all these parties
I’m blowed if I know

I bet it’s all some media invention
Of some advertisement
To get us all to buy posh frocks
We’ll never wear
I’m not invited to Christmas parties it’s true
But so is no one else that I know

The only parties I can think of
Are the Christmas work dos
And no one really likes them
Even if they say that they do

They are social nightmares
No one knows what to say
Then things get very awkward
At work the next day

I’m not invited to Christmas parties it’s true
But so is no one else that I know

I bet there’s some in London
For the swanky people
Where the plebs are not invited
It’s out of our league

They get it all done for them
By a party planner
With fancy decorations
In some matching theme

I’m not invited to Christmas parties it’s true
But so is no one else that I know

I’ve still got presents to wrap
And cards I’ve not yet written
I’ve got to buy a turkey
And put up a tree

So you can keep your Christmas parties
With the extra hassle
Ordinary people
Just don’t have the time

art_party1-420x0

Writing lyrics for therapy

In my last blog post I wrote about the songs which have affected me and helped me in some way with my emotions and feelings. This time I decided to share some of my own lyrics that I write. I find writing lyrics sometimes gives me a somewhat cathartic feeling, helping me to release my emotions. As I can’t write music you may like to think of these more as poems, although sometimes I do have a kind of tune going on in my head. I have been thinking about sharing my lyrics for a while now, but they have some very personal thoughts and feelings in them that I was not sure I was ready to share before. However I now feel that I am able to share them as I have got used to sharing so much with people in my blog.  I am not saying they are very good lyrics, but they do show how I sometimes feel and explain my mood swings somewhat maybe.

Feeling and Thinking (I see this as a sort of Scandinavian style Emo song)
I’m feeling very, very strange
But for me this is kind of normal
I’m feeling like a part of me just died
But I don’t think I’ve been fully alive for a long, long time

I am totally crazy
Or is this just a crazy world, where everybody feels insane?
I mean what is the definition of normal?
You left without explanation
You left me once again
I only asked for a reason
But I only got silent confusion

I’m feeling very, very sad
But for me this is kind of normal
I’m feeling like I should be glad
But I don’t think I’ve been fully happy
For a long, long time

I’m way over thinking
Every little thing that I do
I even think about thinking
I wish I knew what to do
It’s driving me MAD!

I’m feeling somewhat frightened

Depression (A fairly slow song, sung to a melancholy tune that sort of plods along in a heavy way much like depression)

I only have to think of you and I know I’m going to be sad
I know the feeling is going to take over for a while
I will lie there and play out everything we did in my mind
Then imagine the scenes that never even happened, happened to us
You become my fantasy man

The light is slowly fading away
The walls of the tunnel are closing in around me
I only wanted someone to guide me through the darkness
To hold my hand and show me the way
The walks of the tunnel are closing in around me

I live in my dream of what could be
In my dream it does not hurt as you don’t leave
I become what I can’t be
However I can’t quite escape reality
I will never be free

Where Do I Go From Here (A rock song with a somewhat angry guitar sound)

Please don’t go
Say It isn’t so
Say it’s something we can work on together
Close your eyes
Imagine us without each other
I can’t, can you?

Too late, you said goodbye
Where do I go from here?
Do I pick myself up?
Dust myself down?
And wait for another you?
Or do you think I’m better off alone?

One day
I might get my forever after
But right now
I must learn to deal with this
Just me
Right here on my own

You’re Messing with My Mind (this is a kind of Imelda May rockabilly style song with a heavy double bass sound)

You’re messing with my mind
You’re messing with my brain
You’re driving me totally insane
You ‘aren’t good for me
No, no, no
You bring out my bad side

You drink and you smoke
You like a good toak
You see this all as some great big joke
You ‘aren’t good for me
No, no, no
You bring out my crazy side

You got me feeling so confused
One minute you’re as nice as pie
Then next you are a nasty guy
What am I supposed to do?
I think I am in love with you

I’m messing with my heart
I do it all the time
I fall in love so fast
There’s no way it can last
No, no, no
I bring out my dumb side