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Why did I even bother to be diagnosed at all?

I was diagnosed as Aspergers Autistic aged thirty-one. A few people asked my why I needed or wanted to be diagnosed at that age, what difference could it make to my life now I had already got that far into adulthood? Well…

It was a relief to have the diagnosis. I had suspected I was autistic for some years and my mum had been reading up on it when I was a teenager. She knew there was something different with my brain, I was just so unlike others. Having suspected it for years it confirmed things for me and my family. It proves what I thought about myself which was I can not help being the way that I am sometimes. Also confirming the type of autism gave me a clearer idea of things.

Having an explanation for being slightly different or awkward really helps at times. I have been called selfish, attention seeking and rude by numerous people over the years when I am actually trying my hardest to fit in and do not mean to appear that way at all. Even worse is when people accuse me of these things when I am really struggling and having a melt down. Saying such things will often just prolong the melt down or makes me more likely to have another one. At least now I can say I am autistic and am trying my best, please try to be understanding. Being autistic is not an excuse to get your own way or to knowingly be rude to someone, but when I do not mean to be it helps to explain things to people. If someone then says I can not possibly be autistic, as has happened in the past, I can now say I have been officially diagnosed by professionals.

Being diagnosed officially helps when claiming benefits. Getting Employment Support Allowance and other benefits is often hard and saying you suspect you have a condition does not count, you need a professional diagnosis in your notes. Last time I was assessed it was tricky to prove my need for ESA when I was yet to be tested for autism. I had a support worker who stood up for me which helped a great deal, but I no longer have a support worker so if my claim comes up for assessment again I will need this diagnosis more than ever.

I now feel more justified spending time researching Aspergers and autism. I can find other people with autism who I can identify with at least in part and say me too, helping me feel less of an outsider.

If you spent your entire childhood and youth feeling different and like you did not fit in would you not want to confirm why this was? For my own peace of mind I needed to know for sure.

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The person behind the blog

About-me.png

I thought it would be good to share more about me and my personality so you can get to know the person behind the blog. These are words and phrases I associate with myself.

  • Total Hip Replacement/ Perthes Disease– As of August 2011 I have had a false left hip, done aged 25, made of plastic and ceramic with a metal stem. I had it done due to osteoarthritis in the hip brought on early by childhood hip issue Perrthes Disease.

  • OCD– Obsessive Compulsive Disorder, diagnosed aged twelve.

  • Autism/ Aspergers– I was diagnosed aged thirty-one, but have suspected I have it for years.

  • Disabled- I am less physically disabled now than I used to be thanks to my hip replacement, but know that it will not last for ever. Also my mental health can make me feel somewhat disabled at times. Autism is not a disability as such if you see it as just a different way of thinking, but it is often classed as one such as when applying for benefits or educational support.

  • Social Housing– I live in social housing,which is what used to be known as council housing in the UK, but now run by different housing associations. I have been living in my one bed flat since Easter 2016 and I really like it.

  • Benefits– I receive government benefits. Currently I get Employment Support Allowance as for various mental health reasons I can not work full time right now. I also get housing benefit to help with my rent. I have in the past had Disability Living Allowance, now changed to Personal Independents Payments, but I am not eligible for it at this current time.

  • Volunteer– I have been volunteering for various local charities and good causes since I was seventeen. It helps me to get out more, make friends, learn work related skills and add to my CV. I currently help a community craft shop, do administration work for my local community centre and help another charity run their Facebook page.

  • Drama Degree– I graduated the University of Lincoln with a BA (Hons) Drama degree in 2011. I really enjoyed my three years there.

  • Sister/ Aunt– I have one older brother and am an aunt to his two children, a nephew and a niece. I love being an aunt.

  • Devon– My home county where I lived all of my life, apart from time away for university.

  • Crafting– I have been making cards to send people for years. I now also make small things to sell under the name The Gothic Butterfly. I have a small shelf in a local craft shop and a Facebook page. I decorate gift boxes and bags, make gift tags, book marks and other small objects.

  • Colouring- Now it is very popular to do adult colouring, but I was doing it before it was so easy to even get adult colouring books. I find it helps me to relax and distracts me from my anxiety.

  • Theatre– A life long love of mine is going to the theatre to see many kinds of performances. I love musicals, plays, ballet and modern dance. I also enjoy some opera and stand up comedy, although I am a bit more fussy about which of these I would go to see.

  • Pub Quizzes– I enjoy going to various pub quizzes regularly with a group of my friends. Not only is it fun to take part and test out how much general knowledge I have, it is a good way to socialise.

  • Writer– I have always enjoyed writing and have had good feedback for my writing more so than anything else in my life. As well as this blog, I write a daily diary which I helpful to explore my thoughts and feelings. Writing for me can be kind of therapy. I also have pen pals around he world I write letters to.

  • Internet– I love the internet, it is somewhat of an addiction for me I admit, but it has been such a help to me during low periods of my life I do not care. Social media is for me a tool that I can use to express myself and keep in touch with friends which as an autistic person I always find quite tricky. I mainly use Facebook, but I also occasionally use Instergram for photo sharing. I obviously use the internet to share this blog and like most people use email. I also use the internet for a variety of other functions which I have written about before in a previous post.

  • Cafes/ Coffee Shops– I really like to drink coffee and hang out in coffee shops. Although I do go to pubs sometimes, I tend to spend more money and time in cafes. I often get quite tired from my mental and physical health issues, cafes are a good place to go and recharge my batteries when out. I like the relaxed, often friendly atmosphere of a cafe. I also really like coffee and cake.

  • Television– I watch a lot of TV. I find it helps with my mental health to distract me from my own anxious thoughts and not over think negativity about things in my life. I also really enjoy certain programs. I really like Call the Midwife and Doctor Who. I like some documentaries and have learnt a lot from watching many on the BBC. I also like some sitcoms and animated comedy such as American Dad.

  • Music– I enjoy listening to music a great deal. My favourite bands are The Rasmus, a Finnish rock band and Train, American soft rock. I enjoy the music of old bands such as Pink Floyd, the Kinks and the Mamas and the Papas. I like a lot of funk music from the 1970s and 80s. I like a lot of musicals show tunes. Also when in certain moods I enjoy classical music.

  • Cheese– A life long love of mine is cheese, I even ate strong blue cheese as a small child. I am yet to find a cheese I do not like (apart from goats cheese, which has an after taste I dislike).

  • Dark Purple– This has been a colour I have been drawn to all of my life. I like it in nature, in things that I wear and around my flat. I am not sure why this is, but I remember liking purple things from a very young age.

Writing this you would think would of been easy, but it was harder than I thought it would be.  I had to work out how much I wanted to reveal about myself and what things I even do associate with myself.  Other people may associate different things with me, but this is how I see myself.

Common Sense and Respect for the Disabled Please

This is a rant, a rant about things disabled people hate, at least some disabled people. Not everything on the list will affect all disabled people and these are just what I have experienced and observed.

People who judge others for using disabled facilities such as toilets and parking spaces without knowing them. I used to have a disabled parking badge due to not being able to walk very far without getting tired or in pain, but I did not always use a walking aid. Sometimes people would stare at me as if to say, why have you got a badge when you can walk. I got the same look sometimes when I would come out of a disabled toilet. They did not know me or my situation and it was none of their business why I needed to use disabled facilities, but even a look can make you feel judged. I have heard stories of people getting notes left on their cars for parking in disabled spots being accused of using someone else’s badge when it was their own!

Bus drivers who refuse to let a disabled person on as it would mean them having to get up to get the ramp out or having to ask someone with a push chair to fold it and move seats. The space at the front of a bus is not for a pushchair, the signs clearly state it is a disabled space, yet some drivers do not seem to enforce this. Bus drivers who refuse a disabled person are discriminating against them. A recent court case that went all the way to the Supreme Court found in favor of the disabled claimant in that ‘the court said the company should consider further steps to persuade non-wheelchair users to move, without making it a legal duty to move them,’ (http://www.bbc.co.uk/news/uk-38663322). So it is an ongoing battle with some drivers to get a space on a bus.

When a disabled toilet is used as a storage area or left out of order for a long time. Sometimes it feels like the disabled toilet is only there as a legal requirement and the company do not actually care if you can use it or not. For example a pub near me uses their disabled toilet to store things. You can still technically use the toilet, but the rails are blocked by things, and a lot of disabled people need the rails. My local supermarket has had an out of order disabled toilet for about a month now. Businesses are being short sighted when it comes to disabled toilets sometimes as it could lose them business. For example when I am on a night out with some of my friends, some of them are very disabled and we would choose to not go to a bar that we knew had bad disabled facilities. This would mean them losing out on not only the disabled persons custom but all their friends custom as well.

Shops that give little or no thought to disabled customers. Really heavy doors can be a  problem. When I was on crutches I used to use my body to push the door open, but with heavier doors this was tricky. For those with arthritic hands and wrists heavy doors can be impossible. Automatic doors are better for disabled customers, or at least a lighter door. Then once inside the shop the lack of space between rails or shelving can be an issue. Some clothing shops have over full rails that are too closely packed for a wheelchair user to get past. I used to knock things off sometimes in crutches if I was not careful. I have noticed that some shops have too much stock piled up on the floor between shelving units which can mean no space for a wheelchair or walking frame to turn around. Without the space to move disabled customers will shop elsewhere.

Poorly maintained pavements and walkways. Loose paving slabs and crumbling tarmac can be a trip hazard for anyone, but even more so for those with walking aids. I used to trip up on loose slabs when I was on crutches and this could hurt my hip quite a lot. People in wheelchairs can fall out of their chair if the wheels get caught up on loose slabs or in pot holes.

Dog waste and rubbish left on pavements and paths. It is unpleasant for anyone to have to smell and see, but for the disabled it can be very annoying. Dog waste can get on the wheels of someone’s chair and it can mean dragging it around. It is not always easy to see the ground right in front of your wheels to know to avoid it. Blind people also have obvious problems with dog waste since they cannot see it to walk around it. Rubbish can also be a problem since it can get caught up the wheels of a chair and then cause the chair to not move smoothly. I have noticed a significant increase in both dog waste and litter in the last few years and this shows a lack of respect for both other people and the environment.

People who park in front of drop down curbs on pavements or park on the pavement. A disabled person may not be able to cross the road without a drop down curb and may have to go an awful long way to find the next one, which could take them a long way out of where they want to be. There is a convince store in my town that people often park outside to pop in quickly, but they often park in front of the drop down curb. They often say they will not be very long, but what If the queue is long or they get distracted by something else? Parking on the pavement is just as bad as it means a disabled person may not be able to get passed. Often this means a disabled person will have to go back on themselves for ages and divert a long way round or simply not be able to get where they want to go. I have often had to walk into the road to get around a car and some disabled people simply cannot do that.

People who talk for you or to your companion about you when you are right next to them. This seems to happen especially to those in a wheelchair, it is as if because your legs do not work nor can your mind to talk properly. This is patronising and rude. When I was younger if this happened when I was with my parents I would just start talking anyway and join in showing them I was more than capable of talking for myself, in fact they might have more trouble getting me to be quite! Sure some people do have learning difficulties that come with a physical disability, but even then it still does not mean they cannot talk for themselves in most cases.

Poorly designed disabled toilets. Not all disabled people are in wheelchairs and want the sink low, in fact after my hip surgery I needed the sink not to be low as I could not bend far, but needed the rails and raised seat of a disabled toilet. Some disabled toilets are far too small for the needs of some disabled people who may need a carer to come in with them as well as space for a wheelchair or walker. A lot of disabled toilets also seem to lack a mirror which assumes disabled people do not care what they look like, which is wrong, disabled people are just as likely to want to check their make up or hair as everyone else.

People who say ‘you’re doing so well considering’ or call disabled people brave. They are very patronising things to say.  How do you know I am doing well? For all you know I am having a really bad day and on a good day you would not even notice I was disabled. How is it brave that I left the house and got on with my life? What am I supposed to do sit at home and rot? I cannot live my life not disabled so I just get on with it the best that I can.

Being accused of being a benefit scrounger. This is the big one that all disabled people hate. The media often make it seem like an awful lot more people are scamming the benefits system than actually are. The vast majority on benefits are on them legally with a good reason. Most people would not choose to be on benefits if they could help it. Having to prove yourself as ill and jump through the hoops they require to get them would put most cheats off. Being on benefits does not make me lazy or pathetic. You should never judge someone for being on benefits or any kind of welfare without knowing the full facts.

Disabled people are on the whole sensible and understand that sometimes some of these things cannot be helped under certain circumstances. What we ask for is to not let these things be issues when they do not have to be. A bit of common sense and respect is all disabled people want. Disabled people can be an active part of society, if society lets them.

Disabling Attitudes

The reaction I get when someone realises I am disabled is usually one of three

The patronising sympathy attitude

Recently in a café a man came up to me and said I was doing really well. He asked if I had spina bifida, which was rather a personal thing to ask, none of his business and wrong. I explained I had a hip replacement. He then went on to tell me he used to work in a special school with people like me and I was doing really well. I know he meant well, but I found it annoying. Firstly ‘people like me’ just labels me as special needs and does not give me any credit as an individual person. Secondly how does he know I am doing really well? I was in a café with my mum, nothing remarkable in that. What is a disabled person supposed to do? Either I carry on with life like everyone else or roll over and die. I guess I could sit at home all day, everyday and get very depressed and lonely, lamenting woe is me I am disabled or I could go out and have some kind of a life. Also being disabled physically does not make me stupid. The man in the café may have thought I was doing well to be so functioning. Well I chose my own drink, ordered it and paid for it, and do this kind of thing on a regular basis. In fact I live alone and do not have a carer.

The fact he used to work in a special school with that kind of attitude annoyed, but did not surprise me. I spent three years in a special needs school as a teenager and this was something that annoyed me on an almost daily basis, the patronising attitude of some of the staff. I think I may have acted up a little bit less perhaps if the staff had expected more of me. Thankfully my parents were never patronising and never let me use my disability as an excuse to not make an effort or learn things. I can do a lot more for myself now thanks to my parents making me learn than I may have been able to do otherwise had it been left up to school.

The super human Paralympics attitude

I watched the Paralympics opening ceremony earlier this month. I like the Paralympics; they are fun and help promote disabled issues around the world. On phrase I dislike that was also used a lot in the 2012 Paralympics, that disabled athletes are ‘superhuman’. I admit that they achieve some incredible things, but why are they superhuman? Disabled people are only joining in sport like everyone else. Sport for some people seems to be something natural, an instinct, why is it so amazing that a disabled person would also have this? Yes it is often harder for a disabled person to be able to join a sport, but it can be tricky for anyone to join sports, especially at an Olympic level. Sometimes the Paralympics can make it harder for the disabled with people thinking that if the Paralympians can achieve so much why can’t all disabled people. For example someone once said to me that if the disabled athletes can do that, why I can not even get a job. When it comes to work my physical issues are the least of my problems, like all disabled people I have more going on in my life than just my disability. Every four years it is like we are all suddenly expected to be superhuman. Well I will win a Paralympic medal the day all my non-disabled friends win an Olympic medal. Rob Crosan in the Telegraph puts it well, ‘The Chances of most disabled people becoming a world class athlete is roughly the same as it is for able-bodied people (i.e. nil).’

The scrounger on benefits attitude

I would love to have a paying job and not be on benefits, but that does not seem to be an option for me right now. There is only a brief three month period of my life I can remember being totally off any benefits as an a adult when I had part time temp job. I was on job seekers allowance for a number of years before changing to employment support allowance for health reasons. At first on job seekers everyone seemed supportive, but the longer I remained on it the more the support seemed to decline. People who understood my situation less well started to say not very nice things. Apparently I was lazy, not trying hard enough or too fussy about the type of work I would do. If only they knew how hard I was trying to get work, attending interview after interview and getting rejected over and over. I ended up having to remove a couple of people who I thought were friends from social media for saying very negative things about people on benefits.

The media do not help with the scrounger attitude some people have. There are so many newspaper articles about benefits cheats that it must seem to some that the vast majority cheat the system. For example if you type the words disabled or disability into an internet news search, you nearly always get at least one article on someone who has been caught cheating benefits. Yes, a few people do lie and claim benefits falsely, but the vast majority do not. ‘Official data shows that there is nearly twice as much error as fraud in the benefits system’ (www.disabilityrightsuk.org). Less than one percent of people are benefits are said to be fraudulently claiming. The media often muddle up fraud statistics with system errors making the fraud look much worse than it actually is. The government have also made things worse by constantly banging on about cutting disability benefits and catching benefit cheats. However if I was to come off ESA I would have no income coming in at all apart from housing benefit which gets paid straight to my housing association anyway.

I am not a scrounger; I volunteer a lot in my local community. I am not super human, I am rubbish at sport, but I also do not want your sympathy. I am simply me, a human being, but as Penny Pepper writes in the Guardian, ‘It truly seems that the only acceptable disabled person is a Paralympian – and then only for a few weeks’. All disabled people just want to be accepted as themselves and not just during the Paralympics, but all of the time.

References:

Rob Crosan, Telegraph, 15.09.2016
http://www.telegraph.co.uk/men/the-filter/we-disabled-people-arent-super-in-any-way-i-couldnt-care-less-ab/

15.05.2014
http://www.disabilityrightsuk.org/news/2014/may/benefits-fraud-less-one-cent

Penny Pepper, the Guardian, 06.09.2016
https://www.theguardian.com/commentisfree/2016/sep/06/paralympians-superhumans-disabled-people

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.

 

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.

Moving On

It has been a while since my last blog, but I have a good excuse. I have been busy moving. I have finally moved out of my parent’s house and unlike university this time it is hopefully for good. This is something I have wanted for ages, but I did not think it would be possible for me in the near future. All it took was for me to have a kind of mental breakdown and to feel utterly miserable for months.
I now live in supported housing for those with mental health issues.
Supported housing helps people to have somewhere to live independently, but with support when they need it. There are various types of supported housing depending on need. There is supported housing for those with learning and developmental issues, those with more physical issues and of course for people with mental health problems.
I live in what can be classed as a low support house with staff in weekday nine to five and no staff at all evenings, weekends and bank holidays. Those who need more support may live in a house with staff in evening and weekends, and for those with the highest need there are houses with staff who even sleep in the house just in case they are needed.
The support staff here can help us with things such as benefit and money issues, getting to appointments by helping us work out the public transport to somewhere or even giving us a lift if necessary, helping us organise volunteer work or other things to do, making sure we are getting the help we need with our mental health issues and generally keeping an eye on us to make sure we are safe and managing ok. In some types of supported housing I imagine there is more support with everyday things like cooking and shopping.
One of the main reasons I did not leave home sooner was the cost. Private rent is very expensive, hence so many adult children still living at home with their parents well into their twenties and even thirties. I had looked into social housing (what is now council housing), but it looked almost impossible for me to get any. I then learned there was another way into social housing in the form of supported housing and with my current mental health problems it sounded like it might be a good idea for me rather than jumping straight into living totally alone. Here the costs per person for rent and bills are kept down due to sharing the house between six of us. Most of my rent and bills are covered by housing benefit, with me paying a little bit extra each week on top of that. My main expenses are on food and transport on the bus or train.
So how do you get to live in supported housing? For me it was a case of being honest with myself about having mental health problems that had reached the point I was no longer really coping and going to my GP for help. I was not holding out the greatest hope as I had been to doctors previously about my mental health and they had just upped my medication which I did not seem to help. However last year I changed surgery and this one was proving a lot better for me, so I thought I would see if they could help. My doctor booked me in for a mental health review with a specialist, and actually seemed to take my problems seriously. The mental health specialist came out with a number of suggestions including passing on my details to the local mental health housing guy. It was agreed that living with my parents was not helping me. Part of it was issues with my parents, but also being both jobless and living at home was making me feel stuck, like I had hit a wall and was not able to move forward any more with my life. I needed a fresh start and this place was suggested to me. After visiting the house I had a couple of days to think about it, but I knew almost straight away that I wanted to move in. To live here you must have a statement of need, which for me came from the NHS mental health specialist. Another way into supported housing is through a social worker, but I am not exactly sure how that works. There is also an element of luck in that a space in a house has to actually be available, which sometimes can mean a bit of a wait, but luckily for me this house had a vacant room.
The other great thing about this particular type of supported housing is that after about two years they help you move on into independent housing. The simple fact of having lived in supported housing for more than a few months means you get more chance of social housing in your own flat. The support workers here help you with finding and securing a place to live on your own, with working out things like how to pay and budget for bills, furnishing the place and with the move itself.
This house has space for six residents, all of whom have some kind of mental health problem. It helps to live with other people who understand what having mental health issues can be like. We all understand that mental health issues such as depression can come and go and some days will be better than others. The residents offer peer support to each other, listening and talking together and trying to help when problems arise. Most supported housing seems to be mixed sex and mixed ages, which I find makes life more interesting. You learn more about different ways of living life and how to cope if you have a more varied mix of people.
Before I was offered this place, I did not even know there was such a thing as supported housing for those with mental health problems. I had heard of supported housing for those with learning and developmental issues before, but had never considered supported housing as something that would be suitable for my needs. I thought it was all about helping those who could barely even cook a meal or do their own laundry. Having low support needs I thought I was one of those borderline cases, too special needs to get a job and leave home, but not special needs enough to get any support or help from anyone apart from my parents. So when this place was mentioned I was quite surprised and unsure what to make of it. I did not want to end up feeling institutionalised or like I was back to being labelled as special needs again. I still want to get a job one day and feel like I am contributing to society rather than just existing and sitting around doing nothing all day. I was told it was low support with no staff at all evenings and weekends which is what appealed to me most. They trusted us to be left alone and be independent, but did not totally abandon us.
Before I moved I did of course worry slightly. Would I get on with the other residents, would I get on with the support staff, would I cope living without my mum and having to do more for myself? However I figured I would not know unless I tried and I knew I would regret it if I did not do it. Having now lived here for my first month I am very glad I made the move and feel very lucky to have a place here. It was the right thing for me to do as it has helped me to feel more of an adult, making my own day to-day choices about things and doing far more for myself. I also feel like I have taken the next step with my life and am finally moving forward.

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