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Monday, 14 March 2011

why is there still a stigma attached to depression?

I started writing today with a great need to write, but not really knowing what I was going to write about or where this blog was heading. All I know is writing my blog helps me to verbalise some of  my thoughts rather than have them stuck inside my head whizzing around at a hundred miles an hour. Sometimes I do not see this though because as we all do I get caught up in life and feel like I just don't have time for it. This makes things worse for me as I then feel guilty about not writing anything and leaving people wondering when my next blog post is going to be.

Guilt is a very powerful emotion and something I suffer from a great deal. The guilt I feel about things makes me feel worse and puts extra pressure on me that I do not need. I also do not cope with stress well and so guilt and stress can become a lethal concoction. I have actually had quite a stressful day today and was glad when I got home so that I could rant and rave! Learning which situations you find stressful and recognising the warning signs is the first step to being able to cope (for me anyway). I have found the same is true for depression. At present I am on anti depressants, although it took me many years to accept that I was suffering and that I needed to change things I finally made the step to recovery.

Unfortunately there is still a stigma towards mental health problems which often makes it hard for those suffering to admit that there is a problem and that something needs to change. About seven months ago now I took my first step to what I describe as my recovery. I went to the doctor because I knew that I didn't want to feel the way I did any more. The worst thing for me was the YoYo mood, not bipolar levels but my mood would vary massively from day to day. My lows were becoming lower and more frequent and although my husband was amazing through this time, it was a strain on him and our relationship as well. At the point of me making that first step we were not married and I suppose that was one of the biggest reasons why I knew I had to change something because I did not want to go into marriage with so many difficulties. Marriage is supposed to be a joyous time and if I was suffering as much as I was at this point then it wouldn't have been what every woman dreams of.

So I head off to my doctor to speak to her, she was very supportive and I suppose once I had the first appointment there was a relief about taking that first step. She went through the motions and referred me to counselling as well as prescribed me antidepressants. For a short period of time after this first appointment I felt like I lived at the doctors (that is good I suppose as I was at least being treated properly). It took me a little while to get the right medication, at the right level. Some of the times before this were quite scary because it actually magnified some of my feeling and experiences. I am naturally quite an anxious person, but the medication initially made this worse. I started to wonder whether I had made the right decision, but thankfully since the medication has been sorted it has gradually started to make me feel better.

Counselling took a while to start and so this did not occur until after I got married. Thankfully the medication was beginning to work by the time the wedding came around and I was feeling a little more settled and able to cope, most importantly able to enjoy our special day. The wedding day was all that I could have wished for and the honeymoon was amazing. When I came back from this I struggled a little as it felt that I was coming back to earth with a bang. I have learnt to keep busy, but not too busy that I let things get on top of me. I do find it difficult to say no and so sometimes will take on more than I should do. Learning to pace myself will only take time, but I am trying because I know that this is one of the main ways that I can keep a healthy mind.

The counselling finally started and I attended all the 12 sessions that I was offered. These sessions gave me the opportunity to look at areas of my life in a way that I perhaps hadn't done previously. Doing this has helped me to approach experiences in my life in a way that I may not of done before. As I mentioned previously I do not deal with stress well and it is through counselling and giving myself time to think about some of my experiences I have come to realise this and find a better way to cope rather than going in on myself and letting it eat me up.

I have also found my own counsel in my blog and some of the activities I have now got myself involved in. I see myself in a more positive light and recognise that I have something to offer the world. I write my blog for myself, but I do hope that what I write does help people who may be going through similiar themselves. Depression is not something to be ashamed of, it can happen to anyone. If you are feeling this way it is not a failure to ask for help (this is something that I have only learnt recently). People who have not suffered from a mental illness cannot fully appreciate what it is like but, if you admit you need help people are there to listen, be it a friend, relative or doctor. Please don't suffer in silence.

Thursday, 3 March 2011

What is it like to live with Disability, Pain and the Expectation of employment in the mainstream world?

I have a lot of experience of pain which is as a direct result of my disability and regularly feel that people just don't understand, so feel I am qualified to share my opinion on this. I have been a wheelchair user all my life and my body to put it politely has taken a battering and is a mess. This has meant that as I get older I have suffered with more pain, especially with regards to my back going into spasm. I perhaps haven't looked after my body but have I had a choice? Not really, if I chose not to do something due to the risk of hurting myself I wouldn't do anything. This is not a life worth living! So I make the only choice possible, which is to put myself at risk on a daily basis to live as normal as possible.

Expectations of other people puts pressure on me to do things that you know could potentially harm you. Since I have been driving I have had to get my wheelchair in my car on my own and as I can't stand at all it means I have to drag my wheelchair over me to place it in the passenger side, this video on you-tube gives you a slight insight into the difficulties of getting in and out of the car just to go out when you are a disabled person People have always helped me with my wheelchair if they are around, but that cannot always be guaranteed if I want to be an independent active wheelchair user. The process of getting in and out of my car also takes time, so I always have to give myself plenty of time to get wherever I need to go, rather than just 'jump in my car and go' as so many other able  bodied people do without thinking about it. I think this is one of the hardest things about having a disability and that is seeing other people do things so much easier and they take it for granted.

These are all things that able bodied people don't have to think about and so this adds to the pressure to do things that you know potentially could hurt you more, just to be able to fit into society. Recently I looked into the option of a rooftop hoist, which hoists my wheelchair to reduce the strain that getting my wheelchair in and out of the car provides. This option sounds like a good idea I hear you say, so this is why I am going to explain why they aren't as great as they sound. Firstly they would slow the process of getting in the car and going out even more, that is if I decided to get it fitted in the first place. Before having it fitted I would have to make some other choices. The wheelchair that I have at present would not be suitable for the hoist and so I would need to change it to a folding wheelchair. For an active wheelchair user this is not at all practical as  they are much harder to push because power is lost due to the movement of the frame. The piece of equipment is also very expensive, because it is specialised and the companies that sell it know some disabled people have no choice about the purchase. I would get some financial assistance with this but would still be expected to find quite a bit of the money, which on part-time low pay is not the easiest option. So as you can imagine I chose to stay with a lightweight wheelchair. I have managed to get a really lightweight wheelchair which has helped, but I still had to find some of the money.

I received some support from Access to Work and Wheelchair Services. But that is another issue altogether, both sets of funding are at risk of government cuts set by the current Tory led government. If these cuts are put in place, this will just marginalise disabled people further in society. Making it even harder to be part of a society that they have a right to be part of. Just because my legs don't work why should I have a lower standing in society than someone who is able bodied.

I mentioned expectations of employment in the title of the blog, what I mean by this is partially what I have talked about already but also, my employer has always known me to be able to get to work on my own, in my car and so it is now expected that this is possible and don't see why it isn't sometimes. But as I said earlier, my back has took a battering and so this now means that I get more back pain which does stop me from doing some things because it is just too painful. For a time, before I got my newest wheelchair, people at work were very helpful (although not before I was in tears about it) and would help me in and out of the car to save my back. The situation shouldn't have necessarily got to this point as DDA states 'reasonable adjustment' and if helping me means I can go to work more because I am in less pain then surely this is 'reasonable adjustment?'.

But now because I have a lighter wheelchair that is meant to save my back from as much pain, I receive less help again. I don't expect special treatment and so I have allowed it to go back to this, but there is the worry that even though I have a lighter wheelchair that I may still have problems with my back as was shown yesterday when my back went into spasm, although it wasn't one of the worst spasms I have had it still caused me problems throughout the day but I still went to work because that's what was expected of me. There have been times when I have decided I can't go to work because of the pain, but I always feel guilty about this, because I feel I am letting people down. I also feel that the pain I get is not understood which is understandable I suppose if they haven't experienced this kind of pain.

Sometimes, the expectations of work come before "reasonable adjustments" and so make it harder for people to go to work and be part of society. The many cuts that the government are planning to make including DLA and Access to Work to name a few are going to make it harder for people to go out. The harder it is the less likely it is. Will we become the hidden, forgotten society?

Disability living allowance cuts could confine disabled to homes, say charities. Read this recent report in the guardian that shows the extent of damage these cuts will provide-

Tuesday, 1 March 2011

Is it right how people perceive disabled people?

I would like to discuss experiences through my life when someone has said or done something that was inappropriate to disabled people. I would first like to thank those who commented on my previous post, especially as some of these comments about how disabled people are made to feel were what gave me the idea for this post.

How many of you have come across someone who says something that irritates you? How many of you are disabled and it has been an able bodied person who has said something that irritates you? I am guessing many of you have had one or two of these experiences. It isn't a nice experience in either situation but there is a bigger problem with what some able bodied people say to disabled people because this shows a small glimpse of what they believe to be true about disability. The media doesn't help this perception, because their opinion is listened to whether it is right or wrong.

I specify adults as my subject, because in theory they should know better. Children will often ask inquisitive questions about why I am in a wheelchair and will really mean what they say when they ask "Why don't your legs work properly?" rather than "what happened to you?" followed by sympathetic looks of I'm sorry to hear that. I don't want your sympathy I just want to be liked and respected like everyone else I come into contact as I am part of society and as such should be treated in this way. 

Other irritating things people have said to me on more than one occasion, is things like "At least you don't have to look for a chair to sit in" or when drinking and said to me just this weekend "At least you wont fall over,".
I always feel like saying "What do you think will happen when I get out of my chair?" or "Do I stay in my chair all day and night? Do you really think I want to stay in my wheelchair", I would like to get up and stand but have accepted that this will not happen. I don't mind so much that it wont happen, just don't need someone bringing attention to it at every opportunity. I am sure able bodied people make these comments because they are unfamiliar with the situation they have found themselves in, but if you aren't sure how to treat someone just treat them how you would like to be treated yourself. If everyone does this then they wont go far wrong. 

Oh and apparently I am too young and beautiful to be disabled, which was said to me as someone jumped in the disabled space in front of me because they thought I didn't need the space, is it only old people who need blue badges? If so how come it is estimated that there are 400 million disabled people in the developing world? Contrary to popular belief in the media disabled people don't chose to be disabled and there is not wide spread abuse of disability benefits.

The blue badge on the other hand, there is abuse and I do feel that something needs to be done to prevent this abuse happening. This will only help as long as those who generally require the use of a blue badge don't suffer as a result. There are many a time when I have needed to park somewhere and have ended up parking miles away from my location just so that I can get in and out of the car with enough space for my wheelchair, yet I see people running out of the car and into the building (so they need a blue badge then)! I wouldn't wish the struggle of disability on anyone but I wait to see how these people cope if they really did become very disabled and relied on the space being there. If I can't park in a space big enough I can't go to work, or go out and spend the money that I have earned at work so I am not able to put back into society.

If I am not able to do this I will be forced to claim benefits which I would rather not do, but I understand why so many disabled people feel that this is there only choice because it is not made easy for them to earn their own money, for the reasons already mentioned but also through the lack of understanding of disabled peoples abilities rather than their disabilities.

Disabled people find it harder to get work because of lack of understanding and the work that they get is often paid poorly and only a few hours. The other problem thanks to this government is that the easiest place for disabled people to find work is in the NHS and unfortunately if the government has their way there wont be such a health service for disabled people to be employed by. I do not work for the NHS directly but I work for a charity that is partially funded by the service and so if this money stopped so would my job, unfortunately I am not convinced I would find a job that easily and it is only likely to get worse, being part of a marginalised society is not an encouraging prospect for me and so many other disabled people.

The above mentioned will only change with time, but this government is making it hard for positive change to happen. Disabled people need to show themselves in a positive light and able bodied people need to be willing to listen. Last year the first Disability History Month was held which has been put in place to raise awareness and show disability in a positive light. I will be part of the planning this year, and so hopefully this can go some way to changing attitudes in the future. Disabled people are part of society and will always be so let them be part of it. For more information on Disability History month follow this link