Hi ... I'm sorry not to have posted for so long. At the moment I can not concentrate enough to write a 'proper' post! However, I can do some kind of an update.
1. An application is being prepared by the local Community Mental Health Team, to request funding from the local Primary Care Trust for my treatment at the national Anxiety Disorders Unit. Currently this is awaiting a contribution from the psychiatrist.
2. Psychiatrist is visiting me later this week, as he has not met me yet - the psychiatrist changes each year. So this one needs to meet me before he can do his 'bit' for the application. Seems reasonable to me.
3. The psychiatrist is apparently considering additional medication for me, and will be talking to me about this when he sees me. Ummm ... I will take some convincing on this front. Medication being considered is anti-psychotic. I'm not psychotic, but it would be used for its sedative affect! Charming!
4. I'm on the waiting list for the ADU. If only funding was in place, I would be starting treatment in about 2 months I believe.
That's it. I am only going out once a week now. It is just too difficult, even with a support worker helping me. Sleeping very little. Watching tv, and tweeting - that's it really.
Bye for now.
Monday, 21 June 2010
Tuesday, 1 June 2010
Keeping in touch
Just feel that I've been caught out yet again. This has happened so many times.
I had not heard from a friend of mine for about six weeks. We were very close and used to phone each other each week for a good chat - albeit this has not been the case for a long while now. Last time I phoned her there was a bit of a worry about her husband's health, and I was starting to wonder whether some thing was really wrong, not having heard for so long. So I've just phoned, and everything is fine, which is very good news. But I feel decidedly miffed, that yet again I have given in and phoned.
Why do I worry, and feel concern over them when I do not hear for a while? They have not felt sufficiently concerned to phone me. It is this inequality in the friendship that really grates.
Now I know that they are fine, I so wish I had not given in and phoned, but just waited to see how long it would be until she phoned me. It is obvious that our relationship has changed, and I suppose I have not really adjusted to this.
On the other hand, I think it must be difficult for my friend to have a conversation with me, so phoning me can not be a very attrractive propsition. The longer the gaps between our communication the more difficult any conversation is for me. My world is now so different from their experience. With the OCD and depression, and the 'state of my spiritual life', my life has little in common with their lives, and the fact is that they have little understanding or comprehension of what my life is like. That is not a criticism of them, it is a statement of fact. How can they understand, if I do not feel able to explain?
I feel desparately lonely at times, and yet I am aware that I am pushing people away. Communication is just so difficult.
I had not heard from a friend of mine for about six weeks. We were very close and used to phone each other each week for a good chat - albeit this has not been the case for a long while now. Last time I phoned her there was a bit of a worry about her husband's health, and I was starting to wonder whether some thing was really wrong, not having heard for so long. So I've just phoned, and everything is fine, which is very good news. But I feel decidedly miffed, that yet again I have given in and phoned.
Why do I worry, and feel concern over them when I do not hear for a while? They have not felt sufficiently concerned to phone me. It is this inequality in the friendship that really grates.
Now I know that they are fine, I so wish I had not given in and phoned, but just waited to see how long it would be until she phoned me. It is obvious that our relationship has changed, and I suppose I have not really adjusted to this.
On the other hand, I think it must be difficult for my friend to have a conversation with me, so phoning me can not be a very attrractive propsition. The longer the gaps between our communication the more difficult any conversation is for me. My world is now so different from their experience. With the OCD and depression, and the 'state of my spiritual life', my life has little in common with their lives, and the fact is that they have little understanding or comprehension of what my life is like. That is not a criticism of them, it is a statement of fact. How can they understand, if I do not feel able to explain?
I feel desparately lonely at times, and yet I am aware that I am pushing people away. Communication is just so difficult.
Wednesday, 19 May 2010
Assessment done. Next challenge is funding.
At last I am on a waiting list for treatment, but will the treatment be funded?
Yesterday, I had an assessment at the Anxiety Disorders Residential Unit, and it was agreed there and then that if I wanted to be treated there, I would be added to their waiting list. Excellent news. And better still, the waiting list is a little under three months. Wow! It can be as much as one year. Three months is almost within grasp.
Just e one major hurdle remaining. I had the impression that this treatment was centrally funded. Yesterday I learnt that it has to be funded locally. It seems reasonable that the local trust, that referred me, know that they have to fund this treatment, but they did not say anything when I mentioned central funding in conversation with them. On the internet it talks about central funding for this treatment, and that is where I got the idea from. So I am a little confused. I will feel better once I have confirmation that funding is in place.
After the assessment I was shown around the accommodation, and it was fine. It is better than the accommodation I had when I was at college two years ago. So I was pleasantly surprised.
It was a long day. Leaving home at 10.00 am and returning back at 5.00 pm. For a year or more I have not been more than a few miles from home, and have not been to anywhere unfamiliar. So yesterday was a huge challenge in many ways.
Travelling home I went to sleep in the mini-cab. Since then I have been so, so tired, and have slept lots. I still feel really tired now. But I just wanted to update you. Will write more in due course.
Yesterday, I had an assessment at the Anxiety Disorders Residential Unit, and it was agreed there and then that if I wanted to be treated there, I would be added to their waiting list. Excellent news. And better still, the waiting list is a little under three months. Wow! It can be as much as one year. Three months is almost within grasp.
Just e one major hurdle remaining. I had the impression that this treatment was centrally funded. Yesterday I learnt that it has to be funded locally. It seems reasonable that the local trust, that referred me, know that they have to fund this treatment, but they did not say anything when I mentioned central funding in conversation with them. On the internet it talks about central funding for this treatment, and that is where I got the idea from. So I am a little confused. I will feel better once I have confirmation that funding is in place.
After the assessment I was shown around the accommodation, and it was fine. It is better than the accommodation I had when I was at college two years ago. So I was pleasantly surprised.
It was a long day. Leaving home at 10.00 am and returning back at 5.00 pm. For a year or more I have not been more than a few miles from home, and have not been to anywhere unfamiliar. So yesterday was a huge challenge in many ways.
Travelling home I went to sleep in the mini-cab. Since then I have been so, so tired, and have slept lots. I still feel really tired now. But I just wanted to update you. Will write more in due course.
Wednesday, 12 May 2010
My Winning Poem about OCD
Hi everyone
I've won a prize - a book. And here is the winning poem. It is about OCD. I wrote it five years ago. If you would like to use it, please state that it came from this blog by 'Forever Learning'. Thank you
It is called
I've won a prize - a book. And here is the winning poem. It is about OCD. I wrote it five years ago. If you would like to use it, please state that it came from this blog by 'Forever Learning'. Thank you
I couldn't get the formatting right in this confounded Blogger - I love it really - honest. So I have taken photos of the poem - it does not look too good, but it is a means to an end.
It is called
Tired
At the moment the OCD is running my life. I'm not so much tired of it, but just resigned to it.
Well that's it!
At the moment the OCD is running my life. I'm not so much tired of it, but just resigned to it.
Saturday, 8 May 2010
At last ...
After waiting for what seems an eternity, the assessment is almost here, and I am starting to feel anxious over it - very anxious.
I have a quantity of questionnaires to complete, that will form input to it.
> One is my history of medication and therapy for OCD; I've had six courses of therapy; over two hundred sessions across about twenty years.
> One is personal information - reasonably simple excepting 'Closest Relation'. This has a very specific meaning in the world of mental health. The 'Closest Relation' will only become involved if I am considered incapable of making decisions for myself, and if the 'plan' is to section me! (That sounds great, doesn't it - the good thing is that my care co-ordinator has never considered this as relevant for me.) However, this information is now required. You can not choose who you want. There is a list of relations, from which you have to identify the first relation that you come to that exists and that resides in England. If that relation is not deemed to have the capacity to represent you, further rules come into play. If the circumstance arose, this person would represent me in discussions with consultants, and ensure that all other options for treatment have been fully considered.
> The rest of the questionnaires are multi-choice; approximately two hundred and fifty questions.
A mini-cab has been arranged to transport me, and a support worker will come with me. The assessment is approximately 3 hours, and I think that I have the opportunity to be shown around the residential unit. I will let you know how it goes.
At the moment, just thinking about it, gives me the type of feeling that I associate with returning to school after the summer holidays, and for someone who was literally terrified of school, it was hell!
ps I haven't forgotten about the promised post on:
What things can people do that would help or demonstrate love to people with OCD?
At the moment my mind is just a little bit pre-occupied - no prizes for guessing what with!
I have a quantity of questionnaires to complete, that will form input to it.
> One is my history of medication and therapy for OCD; I've had six courses of therapy; over two hundred sessions across about twenty years.
> One is personal information - reasonably simple excepting 'Closest Relation'. This has a very specific meaning in the world of mental health. The 'Closest Relation' will only become involved if I am considered incapable of making decisions for myself, and if the 'plan' is to section me! (That sounds great, doesn't it - the good thing is that my care co-ordinator has never considered this as relevant for me.) However, this information is now required. You can not choose who you want. There is a list of relations, from which you have to identify the first relation that you come to that exists and that resides in England. If that relation is not deemed to have the capacity to represent you, further rules come into play. If the circumstance arose, this person would represent me in discussions with consultants, and ensure that all other options for treatment have been fully considered.
> The rest of the questionnaires are multi-choice; approximately two hundred and fifty questions.
A mini-cab has been arranged to transport me, and a support worker will come with me. The assessment is approximately 3 hours, and I think that I have the opportunity to be shown around the residential unit. I will let you know how it goes.
At the moment, just thinking about it, gives me the type of feeling that I associate with returning to school after the summer holidays, and for someone who was literally terrified of school, it was hell!
ps I haven't forgotten about the promised post on:
What things can people do that would help or demonstrate love to people with OCD?
At the moment my mind is just a little bit pre-occupied - no prizes for guessing what with!
Wednesday, 28 April 2010
OCD - a beginner's guide?
I started to write a post, based on my experiences, to attempt an answer to the question:
What things can people do that would help or demonstrate love to people with OCD?
But before I got very far, I thought that it might be helpful, if I first provided some (more) basic information about OCD. I'm a bit wary about doing this though. I'm not viewing myself as an expert or anything, I'm just sharing information that I have acquired over the years. Also I'm thinking that you may know more about OCD than I do - well if that is the case, please feel free to contribute via Comments. That would be excellent - thank you.
So here's some basic information about OCD, illustrated from my own experiences.
OCD takes many different forms, and everyone's experiences are different. However, there is also some similarity between people's experiences of OCD.
OCD consists of two parts.
Obsessions
These are thoughts that take over an individual’s brain. Some people with OCD have loads of really distressing thoughts. They can be almost continual. For example, they may be thoughts relating to accidentally harming others, or doing something obscene. I am fortunate, as my thoughts are a lot more settled now than when I was younger.
I used to worry terribly over things. Here is a couple of examples.
The Milk Bottle I can remember we used to have milk at school in glass bottles. I re-call that I put a damaged empty bottle in the crate. Later in the day I was beside myself with worry over the bottle being damaged and whether anyone would notice, and would it end up being re-used and people might get hurt. The worry affected me physically. My fear was extreme. It is only recently that I have realised that this was all part of the OCD. When this level of anxiety took over, there was just one thing that brought me relief, and that was talking to my mother about whatever my worry was. She would re-assure me that it was all ok. I was really fortunate, I knew that I could talk to my mother about more or less anything, and that was an amazing help.
The Unforgiveable Sin I am a Christian, and back in my mid teens I had massive worries over whether I had committed the ‘unforgiveable sin’. I won’t go into details, but it was something to do with the devil. I did not raise this with my mother. I just re-call weeks of overwhelming anxiety.
Some people with OCD have solely obsessions, no compulsions. This is referred to as ‘pure O’ OCD.
Compulsions
These are the actions (rituals) that individuals feel driven to carry out. Some people count, some do certain things a set number of times, others wash their hands until they are virtually raw. For me, the compulsions mainly consist of checking things. This was and is still driven by anxiety that what I do might not be good enough, and that I might inadvertently make a mistake. Making a mistake has a huge amount of baggage attached to it. The anxiety also covers the possible consequences of a potential mistake. For example, if the gas on the oven was left on, there could be an explosion.
As a teenager, I handled this by avoiding situations that triggered this checking, and the anxiety which drove it. Here are a couple of examples of this.
‘The Last Man Standing’ I would avoid being the last person downstairs before bed, as if I was last, I would check that the cooker gas was off, the lights were off, the taps were off, and the list goes on and on. The checking was not quick it would take me some time. My mother would wonder what I was doing, still downstairs, and call down to me. If I moved quickly so as I was not the last person downstairs, then I ran the risk of comments being made about that. Either way, I felt that what I did was wrong/bad. Then once upstairs, I was faced with a similar scenario as I would do what I could to ensure that I was not the last person to use the bathroom. There was the feeling around that I was selfish, pushing in.
‘Home alone’ I would never stay in the house alone. So I normally went on holiday with my parents right up until I was about 30! In my late twenties, there was one occasion, when I did stay at home alone, when my parents went on holiday. The anxiety and checking were so bad that it took me more than two hours between being ready to leave the house, and actually leaving it. That two hours was filled with repetitive checking. I just could not cope and took holiday from work, so I could stay at home until my parents returned.
I checked things exhaustively, and still do when the OCD is severe. It was very, very difficult, and stressful to get to the point where I felt sure enough to move on to the next thing that I needed to check. I believed that doing the checking was something abnormal and bad. So I did not talk about it, I went to great lengths to hide it, even my parents did not know. It was not until I was about thirty that I sort help and started to understand that what I did was not bad or wicked.
Thankfully, nowadays, there is a lot of information available about OCD. Much is right at your fingertips on the internet. There is one site that I came across recently, which contains testimonies by people who have OCD about their experiences of OCD. These give you a feel for the wide variety of ways OCD affects people.
What things can people do that would help or demonstrate love to people with OCD?
But before I got very far, I thought that it might be helpful, if I first provided some (more) basic information about OCD. I'm a bit wary about doing this though. I'm not viewing myself as an expert or anything, I'm just sharing information that I have acquired over the years. Also I'm thinking that you may know more about OCD than I do - well if that is the case, please feel free to contribute via Comments. That would be excellent - thank you.
So here's some basic information about OCD, illustrated from my own experiences.
OCD takes many different forms, and everyone's experiences are different. However, there is also some similarity between people's experiences of OCD.
OCD consists of two parts.
Obsessions
These are thoughts that take over an individual’s brain. Some people with OCD have loads of really distressing thoughts. They can be almost continual. For example, they may be thoughts relating to accidentally harming others, or doing something obscene. I am fortunate, as my thoughts are a lot more settled now than when I was younger.
I used to worry terribly over things. Here is a couple of examples.
The Milk Bottle I can remember we used to have milk at school in glass bottles. I re-call that I put a damaged empty bottle in the crate. Later in the day I was beside myself with worry over the bottle being damaged and whether anyone would notice, and would it end up being re-used and people might get hurt. The worry affected me physically. My fear was extreme. It is only recently that I have realised that this was all part of the OCD. When this level of anxiety took over, there was just one thing that brought me relief, and that was talking to my mother about whatever my worry was. She would re-assure me that it was all ok. I was really fortunate, I knew that I could talk to my mother about more or less anything, and that was an amazing help.
The Unforgiveable Sin I am a Christian, and back in my mid teens I had massive worries over whether I had committed the ‘unforgiveable sin’. I won’t go into details, but it was something to do with the devil. I did not raise this with my mother. I just re-call weeks of overwhelming anxiety.
Some people with OCD have solely obsessions, no compulsions. This is referred to as ‘pure O’ OCD.
Compulsions
These are the actions (rituals) that individuals feel driven to carry out. Some people count, some do certain things a set number of times, others wash their hands until they are virtually raw. For me, the compulsions mainly consist of checking things. This was and is still driven by anxiety that what I do might not be good enough, and that I might inadvertently make a mistake. Making a mistake has a huge amount of baggage attached to it. The anxiety also covers the possible consequences of a potential mistake. For example, if the gas on the oven was left on, there could be an explosion.
As a teenager, I handled this by avoiding situations that triggered this checking, and the anxiety which drove it. Here are a couple of examples of this.
‘The Last Man Standing’ I would avoid being the last person downstairs before bed, as if I was last, I would check that the cooker gas was off, the lights were off, the taps were off, and the list goes on and on. The checking was not quick it would take me some time. My mother would wonder what I was doing, still downstairs, and call down to me. If I moved quickly so as I was not the last person downstairs, then I ran the risk of comments being made about that. Either way, I felt that what I did was wrong/bad. Then once upstairs, I was faced with a similar scenario as I would do what I could to ensure that I was not the last person to use the bathroom. There was the feeling around that I was selfish, pushing in.
‘Home alone’ I would never stay in the house alone. So I normally went on holiday with my parents right up until I was about 30! In my late twenties, there was one occasion, when I did stay at home alone, when my parents went on holiday. The anxiety and checking were so bad that it took me more than two hours between being ready to leave the house, and actually leaving it. That two hours was filled with repetitive checking. I just could not cope and took holiday from work, so I could stay at home until my parents returned.
I checked things exhaustively, and still do when the OCD is severe. It was very, very difficult, and stressful to get to the point where I felt sure enough to move on to the next thing that I needed to check. I believed that doing the checking was something abnormal and bad. So I did not talk about it, I went to great lengths to hide it, even my parents did not know. It was not until I was about thirty that I sort help and started to understand that what I did was not bad or wicked.
Thankfully, nowadays, there is a lot of information available about OCD. Much is right at your fingertips on the internet. There is one site that I came across recently, which contains testimonies by people who have OCD about their experiences of OCD. These give you a feel for the wide variety of ways OCD affects people.
Monday, 26 April 2010
Dealing with Intense Feelings
Contains swearing, so please do not read if you will be offended. Thank you.
Sometimes the emotions that I feel are just so intense, and expressing my feelings on the web helps me to re-gain some kind of equilibrium. I have learnt that I get very upset and distressed over any problems and/or disappoints regarding getting help/support. This is one such example.
A few weeks ago, triggered by learning that I had a further seven weeks to wait for the assessment, I wrote the 'poem' below. I felt desparate - desparate for treatment. I posted this poem (semi) anonymously on the website of an organisation that provides me with support. And I also included it as a comment, to a post on Talking Therapies, on the Mind website.
The weekend followed, and at some stage during it, when I was calmer, I undid both of these actions. Making it public had served its purpose - I was in control of my emotions, and decided that it was better all round if it was removed.
So why am I posting this poem here on my own blog? Well I actually think that if it is going to be shared anywhere then this is the place.
Why am I sharing it at all? It communicates something of my feelings. It provides a glimpse of my world, when I'm not at my best! It reveals the extreme affect on me of the delays in treatment caused by the long NHS waiting lists. And sadly, many, many other people with mental health problems are in the same position.
At times, life is shit,
I am shit.
Sitting here,
Sitting here,
Still sitting here,
Why don’t I move?
I can’t be bothered.
I don’t like myself.
I want to hurt myself,
So that I suffer.
Still sitting here.
In seven weeks, I’ll be assessed.
When will someone help me?
I’m sitting here.
Still sitting here.
In seven weeks and one day,
I’ll have been assessed,
I’ll be sitting here.
When will someone help me.
I am shit.
I am sitting here.
Sometimes the emotions that I feel are just so intense, and expressing my feelings on the web helps me to re-gain some kind of equilibrium. I have learnt that I get very upset and distressed over any problems and/or disappoints regarding getting help/support. This is one such example.
A few weeks ago, triggered by learning that I had a further seven weeks to wait for the assessment, I wrote the 'poem' below. I felt desparate - desparate for treatment. I posted this poem (semi) anonymously on the website of an organisation that provides me with support. And I also included it as a comment, to a post on Talking Therapies, on the Mind website.
The weekend followed, and at some stage during it, when I was calmer, I undid both of these actions. Making it public had served its purpose - I was in control of my emotions, and decided that it was better all round if it was removed.
So why am I posting this poem here on my own blog? Well I actually think that if it is going to be shared anywhere then this is the place.
Why am I sharing it at all? It communicates something of my feelings. It provides a glimpse of my world, when I'm not at my best! It reveals the extreme affect on me of the delays in treatment caused by the long NHS waiting lists. And sadly, many, many other people with mental health problems are in the same position.
At times, life is shit,
I am shit.
Sitting here,
Sitting here,
Still sitting here,
Why don’t I move?
I can’t be bothered.
I don’t like myself.
I want to hurt myself,
So that I suffer.
Still sitting here.
In seven weeks, I’ll be assessed.
When will someone help me?
I’m sitting here.
Still sitting here.
In seven weeks and one day,
I’ll have been assessed,
I’ll be sitting here.
When will someone help me.
I am shit.
I am sitting here.
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