Today I went to a course run by Sheffield Flourish. We were thinking about stories, and also about music and it got me thinking.
It was said that everyone has a story in them and about them, and that scared me a bit, because I don't like some of my story, and some of my story I don't own. However, when we started thinking about music and how that can form part of identity it really resonated with me. There are some days I can't write, or think or do anything, but then when I listen to music it breaks down those barriers in some way and reconnects me to life and reminds me of who I am.
In essence my story is played out through other peoples music, and their lyrics mirror my own experiences. When I find a song that does that it stays with me for a long time and becomes part of me. There are some songs where the majority of it don't make sense to my story, aside from one line. The lyric "this isn't everything you are" is one of those. There are also songs that I really love the words but hate the music to it, and feel like it needs to be sung in a different way and that its true potential hasn't quite been unlocked. Katy Perry's Tiger is one of those songs.
So, I have a great collection of songs that form part of my identity and really speak to me. However, the one I'm going to highlight here is the song "I'm not alright" by Skillet. It really speaks to me about how vulnerable you have to be to ask for help and how easy it is to say "I'm ok". To have this in song format makes it easier somehow to talk about things when I'm not ok.
I hope this has made you think about your story a bit, and what songs you would have in your soundtrack..
Thursday, 15 March 2018
Tuesday, 27 February 2018
An essential luxury
There are things that "most" people would consider luxuries from big things such as cars and cleaners to smaller everyday things such as a straw in a drink, pre packaged veg or somewhe to sit on a bus.
However, for disabled people these things are far from a luxury, despite the additional cost, stress or time involved in getting them. For me, without prepackaged vegetables I simply wouldn't eat them. Without a seat on a bus I wouldn't be able to get on. For others a car is essential to their day to day life.
Before judgement is made over these so called luxuries, perhaps because of the environmental impact or cost impact people need to consider that by restricting access to these luxuries also means that some people also become restricted in their day to day life.
It is not just convinience food, for some people it is simply food. It is not just a plastic straw, for some people it means the difference between a drink and not drinking. Between being mobile or stuck at home.
However, for disabled people these things are far from a luxury, despite the additional cost, stress or time involved in getting them. For me, without prepackaged vegetables I simply wouldn't eat them. Without a seat on a bus I wouldn't be able to get on. For others a car is essential to their day to day life.
Before judgement is made over these so called luxuries, perhaps because of the environmental impact or cost impact people need to consider that by restricting access to these luxuries also means that some people also become restricted in their day to day life.
It is not just convinience food, for some people it is simply food. It is not just a plastic straw, for some people it means the difference between a drink and not drinking. Between being mobile or stuck at home.
Sunday, 26 November 2017
half a parent
When I became a parent in May 2014, I did not become half a parent. I became a parent, a Mum to a beautiful little girl. I did not half feed her, or half wash her or half look after her, but I did so fully, in equal partnership with my husband who was also a complete 100% parent. We were both parents, not half parents, in need of each other in order to be able to competently look after our daughter.
Yes, we shared roles, but it didn't lessen our responsibility. I may also be a disabled parent, but in fact this makes me more of a parent, because I had to endure social services assessments before being allowed to take on that title, something that I continued to do throughout her life.
When my husband and I "parted ways" (another story another time), I did not expect to lose my status as a parent too. Well, it was something that he often threatened me with, but it was never something that I expected to happen, as I have read many websites that tell you to ignore the abusive and threatening words of "don't tell or you'll lose your kids". Unfortunately for me, as a disabled parent, this seems to be true, and not the work of fiction the websites had me believe.
The only reason I am considered half a parent now is because I do not have my husband supporting me anymore. This, and my "disabled person" status are the only things baring me from being a full parent. I find myself having to go over the old ground of proving myself as a parent, despite having 3 years experience now.
My status as a disabled parent should not be a factor. I have been a disabled parent since her birth and will continue to be so. I have not been pretending, nor should I be considered a parent only in context of having a husband or partner to support me. That is very dangerous, and it was that exact sentiment that he used to scare me into staying with him. No person should feel so trapped in a relationship that they fear leaving because they may also lose their child. I had hoped to find support and not judgement for my decision to leave, but here we are.
I may need extra support to be a disabled parent now, which is fair enough, but I should not be prevented from parenting because I am disabled. I was never judged as half a parent before, nor should I be now.
Yes, we shared roles, but it didn't lessen our responsibility. I may also be a disabled parent, but in fact this makes me more of a parent, because I had to endure social services assessments before being allowed to take on that title, something that I continued to do throughout her life.
When my husband and I "parted ways" (another story another time), I did not expect to lose my status as a parent too. Well, it was something that he often threatened me with, but it was never something that I expected to happen, as I have read many websites that tell you to ignore the abusive and threatening words of "don't tell or you'll lose your kids". Unfortunately for me, as a disabled parent, this seems to be true, and not the work of fiction the websites had me believe.
The only reason I am considered half a parent now is because I do not have my husband supporting me anymore. This, and my "disabled person" status are the only things baring me from being a full parent. I find myself having to go over the old ground of proving myself as a parent, despite having 3 years experience now.
My status as a disabled parent should not be a factor. I have been a disabled parent since her birth and will continue to be so. I have not been pretending, nor should I be considered a parent only in context of having a husband or partner to support me. That is very dangerous, and it was that exact sentiment that he used to scare me into staying with him. No person should feel so trapped in a relationship that they fear leaving because they may also lose their child. I had hoped to find support and not judgement for my decision to leave, but here we are.
I may need extra support to be a disabled parent now, which is fair enough, but I should not be prevented from parenting because I am disabled. I was never judged as half a parent before, nor should I be now.
Tuesday, 21 November 2017
self care is the opposite of self harm
trigger warning, talking about self harm. If you aren't able to read my blog, then please take yourself over to a wonderful user led organisation called the Blurt foundation and read about self care https://www.blurtitout.org/resource/self-care-info/
If self harm is the opposite of self care, and if the law has recently come to recognise the damaging effects of emotional abuse suffered at the hands of another, then self harm should also include non physical acts.
I self harm, but in non physical ways. In silent, invisible ways, leaving no trace or no scar that anyone can see. This self harm thrives in the shadows, breeds off the shame and the guilt, and is made worse by the silence.
"Just because its in your head doesn't make it any less real."
Even the act of writing this out is hard. The thoughts of its not real, its not as serious as physical self harm are loud and noisy. The thought that no one will want to read it or understand what I am saying are motivations for me to continue, to fight back and say NO. This is real, and it is just as damaging as the physical harm people do to themselves.
Self neglect, not eating properly, being restrictive in some way, being negative about yourself. It is all self harm. For me, the worst is my really low self esteem, and guilt. When I start to look at all the actions I take against myself these 2 things are right at the bottom.
As I mentioned above, the answer lies in self care. Thanks to Blurt I am learning about the small ways I can look after myself and counter the negative emotional self harm that I experience. By having this vast resource means I can consciously "do self care". https://www.blurtitout.org/resource/self-care-info/
I have recently started to write out different ways I can practice self care for different areas of my life. My self care diet includes things like I should not feel guilty about any food I eat, or spending money on it. I am also learning to be gentle on myself, setting my alarm clock earlier so if I wake up and need some more sleep I can have some without feeling guilty that I have slept in.
The other big thing I can do to counter non physical self harm, is to talk about it. To talk about it in either way, at the self harm or the opposite end of self care. I find it easier to talk about self care, and share the positive things I am doing to look after myself, and I think that it really helps to talk about it.
If self harm is the opposite of self care, and if the law has recently come to recognise the damaging effects of emotional abuse suffered at the hands of another, then self harm should also include non physical acts.
I self harm, but in non physical ways. In silent, invisible ways, leaving no trace or no scar that anyone can see. This self harm thrives in the shadows, breeds off the shame and the guilt, and is made worse by the silence.
"Just because its in your head doesn't make it any less real."
Even the act of writing this out is hard. The thoughts of its not real, its not as serious as physical self harm are loud and noisy. The thought that no one will want to read it or understand what I am saying are motivations for me to continue, to fight back and say NO. This is real, and it is just as damaging as the physical harm people do to themselves.
Self neglect, not eating properly, being restrictive in some way, being negative about yourself. It is all self harm. For me, the worst is my really low self esteem, and guilt. When I start to look at all the actions I take against myself these 2 things are right at the bottom.
As I mentioned above, the answer lies in self care. Thanks to Blurt I am learning about the small ways I can look after myself and counter the negative emotional self harm that I experience. By having this vast resource means I can consciously "do self care". https://www.blurtitout.org/resource/self-care-info/
I have recently started to write out different ways I can practice self care for different areas of my life. My self care diet includes things like I should not feel guilty about any food I eat, or spending money on it. I am also learning to be gentle on myself, setting my alarm clock earlier so if I wake up and need some more sleep I can have some without feeling guilty that I have slept in.
The other big thing I can do to counter non physical self harm, is to talk about it. To talk about it in either way, at the self harm or the opposite end of self care. I find it easier to talk about self care, and share the positive things I am doing to look after myself, and I think that it really helps to talk about it.
Wednesday, 8 November 2017
Marauder on tour..
In the middle of muggle London there are things that are not as they appear. For amongst the shops and offices and ordinary people lie some very special places. I am about to reveal these secrets to you, if you solemnly swear....
On this magical tour of London, there is only one place to start. That is platform 9 and three quarters, the now famed platform that took Harry and his friends to Hogwarts via the Hogwarts express every year. This continues of course, but given the fame the original platform has now got, it has been moved to a location that changes each year for security reasons.
Aside from the walled entrance to the platform, there is also a shop here, where muggles, witches and wizards alike may buy supplies needed for any eventuality. I am unsure if they accept money from Gringots, but they do accept muggle money.
Next door to Kings Cross is a new exhibition revealing how Harry Potter is actually real. The British Library had to work very closely with the Ministry of Magic to approve the contents of the exhibition so that it was balanced between giving some secrets away to satisfy the muggles, but not enough to completely destroy the statute of secrecy that the wizarding world values so dearly.
After exploring these two areas where magic and muggle collide, it is now time to get on muggle transport, either the underground railway, known to muggles as the tube, or the muggle bus, which unlike the knight bus is red and does not bend.
The destination is Oxford Street, more specifically the part of Oxford Street that is next to Tottenham Court road, which some sensible muggle also used to name the local tube station. Here, if you look closely enough you will find the Diagon Alley outlet shopping centre, known to the muggles as primark. If you are eligible to enter via the witches and wizards entrance, the window display will indicate when you are able to enter. For all others, please use the muggle doors. In this shop you will find all manner of useful items for all your wizarding needs, at greatly reduced prices. For your convenience all the shopkeepers at Diagon Alley have agreed to put their items in the one outlet shop, in the spirit of wizardly co-operation.
A short walk from the outlet shopping centre you will find an exhibition put on by famed illustrators in a shop they called after themselves "the house of Mina Lima". In this you will find all manner of items to both look at and purchase to add a bit of magic to your walls. Although the illustrators of the daily prophet are a closely guarded secret, it does appear to be a very similar style to these fine portraits. If you are a muggle, the images will not unfortunately move for you.
A short walk from this location is the muggle bus stop to what the Muggles like to call Victoria Coach Station. If you have the correct ticket though you will also find this is the central location of the Knight bus, given the recent heightened security after too many muggles successfully hailed the bus using their wand arm, leading to confusion from them, the people on the bus and its driver and conductor.
Perfect for a day out. Here is a simple map of the locations in Muggle London.
On this magical tour of London, there is only one place to start. That is platform 9 and three quarters, the now famed platform that took Harry and his friends to Hogwarts via the Hogwarts express every year. This continues of course, but given the fame the original platform has now got, it has been moved to a location that changes each year for security reasons.
Aside from the walled entrance to the platform, there is also a shop here, where muggles, witches and wizards alike may buy supplies needed for any eventuality. I am unsure if they accept money from Gringots, but they do accept muggle money.
Next door to Kings Cross is a new exhibition revealing how Harry Potter is actually real. The British Library had to work very closely with the Ministry of Magic to approve the contents of the exhibition so that it was balanced between giving some secrets away to satisfy the muggles, but not enough to completely destroy the statute of secrecy that the wizarding world values so dearly.
After exploring these two areas where magic and muggle collide, it is now time to get on muggle transport, either the underground railway, known to muggles as the tube, or the muggle bus, which unlike the knight bus is red and does not bend.
The destination is Oxford Street, more specifically the part of Oxford Street that is next to Tottenham Court road, which some sensible muggle also used to name the local tube station. Here, if you look closely enough you will find the Diagon Alley outlet shopping centre, known to the muggles as primark. If you are eligible to enter via the witches and wizards entrance, the window display will indicate when you are able to enter. For all others, please use the muggle doors. In this shop you will find all manner of useful items for all your wizarding needs, at greatly reduced prices. For your convenience all the shopkeepers at Diagon Alley have agreed to put their items in the one outlet shop, in the spirit of wizardly co-operation.
A short walk from the outlet shopping centre you will find an exhibition put on by famed illustrators in a shop they called after themselves "the house of Mina Lima". In this you will find all manner of items to both look at and purchase to add a bit of magic to your walls. Although the illustrators of the daily prophet are a closely guarded secret, it does appear to be a very similar style to these fine portraits. If you are a muggle, the images will not unfortunately move for you.
A short walk from this location is the muggle bus stop to what the Muggles like to call Victoria Coach Station. If you have the correct ticket though you will also find this is the central location of the Knight bus, given the recent heightened security after too many muggles successfully hailed the bus using their wand arm, leading to confusion from them, the people on the bus and its driver and conductor.
Perfect for a day out. Here is a simple map of the locations in Muggle London.
Wednesday, 1 November 2017
Some good news about ESA
I should not feel the need to write this. This should not have to be highlighted as an amazing good news story, but it should be a basic standard expected of all assessment centres, of all assessors and of everyone's experiences with claiming employment and support allowance.
I filled in my ESA50 and supplied relevant medical information as requested. I received an assessment appointment through the post. As there is no longer the option on the ESA50 to detail any reasonable adjustment for an appointment, this appointment wasn't suitable so I had to ring to ask for my three adjustments to be met. These were noted and met with a new, more suitable appointment time.
I arrived at the time stated and made myself known to the reception staff. My second question of "is my medical going to be recorded?" was met with, yes, I have your audio consent form next on the papers to sign.
I was told there would be a 20 minute delay because they were running late. At about 15 minutes in I was approached by a lady who said that I had been allocated to a male assessor and that she noted from my claim that I requested a female assessor. This would not be a problem she stated, but I may have to wait a little while longer once re-allocated.
I was called in after half an hour waiting. My assessment was recorded. I felt listened to, I felt that my assessor was knowledgeable enough in my impairment to provide a decent medical report by the way she was interacting with me.
After about half an hour the assessmnet was over and I was promptly given a copy of the CD recording.
About 3 weeks later I spent the day in panic because I had recieved a strange payment. Usually this means that my claim had stopped, and as this was what I was expecting this is what I had assumed. As it was a saturday I had no way of knowing what the payment was..
until I got the post and the news that I am in the support group, and that the money was backdated premiums for being there.
somethings things go right..
I filled in my ESA50 and supplied relevant medical information as requested. I received an assessment appointment through the post. As there is no longer the option on the ESA50 to detail any reasonable adjustment for an appointment, this appointment wasn't suitable so I had to ring to ask for my three adjustments to be met. These were noted and met with a new, more suitable appointment time.
I arrived at the time stated and made myself known to the reception staff. My second question of "is my medical going to be recorded?" was met with, yes, I have your audio consent form next on the papers to sign.
I was told there would be a 20 minute delay because they were running late. At about 15 minutes in I was approached by a lady who said that I had been allocated to a male assessor and that she noted from my claim that I requested a female assessor. This would not be a problem she stated, but I may have to wait a little while longer once re-allocated.
I was called in after half an hour waiting. My assessment was recorded. I felt listened to, I felt that my assessor was knowledgeable enough in my impairment to provide a decent medical report by the way she was interacting with me.
After about half an hour the assessmnet was over and I was promptly given a copy of the CD recording.
About 3 weeks later I spent the day in panic because I had recieved a strange payment. Usually this means that my claim had stopped, and as this was what I was expecting this is what I had assumed. As it was a saturday I had no way of knowing what the payment was..
until I got the post and the news that I am in the support group, and that the money was backdated premiums for being there.
somethings things go right..
Thursday, 26 October 2017
looking after yourself
I am currently feeling sorry for myself. I have a sore throat and feeling really wiped out, generally speaking "a bit under the weather".
Over the last 24 hours that I have been feeling like this I have spent a lot of time sleeping, I haven't been out, and I have been eating comfort foods.
I have made myself hot chocolate, found some telly to binge watch, and perhaps a film or 2. With my concentration span one or usually lasts all day.
Someone came round with some food for me yesterday and to check up on me. I was really grateful as I really didn't have the energy to cook myself and it was really kind to be thought of.
I haven't felt guilty about all of this, because the best thing I can do to recover quickly is to listen to my body and what it is saying ,which is to rest and relax and be gentle on myself.
Its made me really think about how I react when I have a bad mental health time. I tend to try and ignore it, pretend it isn't happening and hope it goes away. I try to carry on as normal, but it never works and usually makes me feel worse.
I feel guilty and tend to stop looking after myself so well. I get angry at my limitations and frustrated at the world for not understanding.
I find all that "self care" stuff alien, and "not for me". I can go without that, I just need to carry on and I'll be ok, thank you.
I am going to challenge myself to treat my bad mental health days in the same way I would a cold. Treat myself to those "nice tissues", eat the comfort food, spend time in bed if I need to, look after myself more, be creative. Have a nice cup of hot chocolate.
Self care makes sense for a cold, so why not for mental health?
Over the last 24 hours that I have been feeling like this I have spent a lot of time sleeping, I haven't been out, and I have been eating comfort foods.
I have made myself hot chocolate, found some telly to binge watch, and perhaps a film or 2. With my concentration span one or usually lasts all day.
Someone came round with some food for me yesterday and to check up on me. I was really grateful as I really didn't have the energy to cook myself and it was really kind to be thought of.
I haven't felt guilty about all of this, because the best thing I can do to recover quickly is to listen to my body and what it is saying ,which is to rest and relax and be gentle on myself.
Its made me really think about how I react when I have a bad mental health time. I tend to try and ignore it, pretend it isn't happening and hope it goes away. I try to carry on as normal, but it never works and usually makes me feel worse.
I feel guilty and tend to stop looking after myself so well. I get angry at my limitations and frustrated at the world for not understanding.
I find all that "self care" stuff alien, and "not for me". I can go without that, I just need to carry on and I'll be ok, thank you.
I am going to challenge myself to treat my bad mental health days in the same way I would a cold. Treat myself to those "nice tissues", eat the comfort food, spend time in bed if I need to, look after myself more, be creative. Have a nice cup of hot chocolate.
Self care makes sense for a cold, so why not for mental health?
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