So
I am sat here thinking it's 09.27, I have been awake over 2 hours,
eaten and for the moment I was thinking I felt actually not too bad
at all. I considered I could go visit mum after all. There is no
reflexology there today but I could go and mum would be really
pleased because she hasn't seen me for a while, 2 weeks in
fact.
Then I was trying to remember when I had my last bath and wondering would I be able to have a bath AND go to see mum, maybe even a shower. It is nicer if I can be clean when I leave the house and I could put my new leisure trousers on. No not a shower, too cold, standing for that long, while not the problem it would have been a few weeks ago would be a push and I'm pretty sure the car will start, it's only been a week and 2 days since it was given a good charge. No a bath or shower would be pushing it.
Come to think of it I could so lie back down and sleep. I am thinking of going to Mind tomorrow for the last meeting this year. The group and my Mind lady who picks me up and beings me home is special. I want to go. I have the rubbish to put out, the orange bag has been in the hall by the front door for quite a few weeks. Dave did it for me. It is rubbish night tonight. I can't get anything more into my dirty rubbish, the orange bag with tins and plastics, well most of them are loose between the bins and the new paper and card bag is quite full too. I can still leave them for another few weeks if necessary. The dirty bin is quite urgent. I've not been well enough to empty it for weeks and I didn't want that in the hall by my door as well. I think rubbish is a priority.
The level of my energy I am more confident I will be able to do my bins, or at least the dirty bin, if I take it easy today. If I feel able to tackle either or both of the other ones I will. I have got good at judging roughly how much an activity will cost me, although I am still liable to over-estimate my ability but usually when I have time to recover. I wasn't planning on being so ill so long over all of summer. As a normal person things get tougher if I get anxious about what it is I need to do. Having to basically go to court to ask for financial assistance to live is one of those things that can understandably cause anxiety. To have it implied that I may not be working hard enough or pushing myself hard enough by a doctor or the ridiculous notion I am actually well enough to work also has an effect on my anxiety levels.
I would love to be well enough to work. I would love to not have to jump through hoops that quite frankly are set too high for anyone to jump through who is not well to be treated with respect and dignity. A week today I face the new doctor again. I need to teach him that his friends in the DWP are not playing the game very fairly and that by getting him to view patients suffering severe illness as avoiding things by finding it hard to do appointments and finding life a bit difficult to deal with. He said I was being a bit negative when I said how gutted I was having another relapse after a tantalising glimpse of remission. Does he not understand that left me only feeling safe enough to get in that taxi because medical help would have been on standby should I get like I have been getting just walking to the toilet and back with emergency use of the nebuliser. I think I got more upset that last visit than I had actually cottoned on.
I wonder if hearing personal stories has an effect?
I wonder if the further away from the institutionalised decline in compassionate care of vulnerable people, the easier to ignore the suffering?
I wonder how the front line of the care givers cope with the new rules and policies they are being asked to follow? I see some struggle with it, it doesn't feel right but if they don't comply their job could be on the line.
I feel better having expressed that. I am also very in need of cwtching down under the duvet and letting go of the painful tensions in my body and ignoring the pain of lying down. Today I can breathe. I am capable of more than I have been used to being able to even consider without driving myself mad. I am not capable of doing everything I want and need to do. I'd prefer to already have done enough housework to be able to work and play with canvas and paint, to sell my crafts and enjoy interaction with other people without feeling dreadful or actually collapsing. I can't. I can however lose myself in a film and another chance to sleep and dream of being well enough to go off travelling and spending time with people I love.
Writing a public journal that is almost as shambolic as my life, does not mean I am fit to work, watching a film and staying awake doesn't mean I am fit for work. I am a human being. I am loved and I love people.
Tell me you government people, are you a human being too?
Then I was trying to remember when I had my last bath and wondering would I be able to have a bath AND go to see mum, maybe even a shower. It is nicer if I can be clean when I leave the house and I could put my new leisure trousers on. No not a shower, too cold, standing for that long, while not the problem it would have been a few weeks ago would be a push and I'm pretty sure the car will start, it's only been a week and 2 days since it was given a good charge. No a bath or shower would be pushing it.
Come to think of it I could so lie back down and sleep. I am thinking of going to Mind tomorrow for the last meeting this year. The group and my Mind lady who picks me up and beings me home is special. I want to go. I have the rubbish to put out, the orange bag has been in the hall by the front door for quite a few weeks. Dave did it for me. It is rubbish night tonight. I can't get anything more into my dirty rubbish, the orange bag with tins and plastics, well most of them are loose between the bins and the new paper and card bag is quite full too. I can still leave them for another few weeks if necessary. The dirty bin is quite urgent. I've not been well enough to empty it for weeks and I didn't want that in the hall by my door as well. I think rubbish is a priority.
The level of my energy I am more confident I will be able to do my bins, or at least the dirty bin, if I take it easy today. If I feel able to tackle either or both of the other ones I will. I have got good at judging roughly how much an activity will cost me, although I am still liable to over-estimate my ability but usually when I have time to recover. I wasn't planning on being so ill so long over all of summer. As a normal person things get tougher if I get anxious about what it is I need to do. Having to basically go to court to ask for financial assistance to live is one of those things that can understandably cause anxiety. To have it implied that I may not be working hard enough or pushing myself hard enough by a doctor or the ridiculous notion I am actually well enough to work also has an effect on my anxiety levels.
I would love to be well enough to work. I would love to not have to jump through hoops that quite frankly are set too high for anyone to jump through who is not well to be treated with respect and dignity. A week today I face the new doctor again. I need to teach him that his friends in the DWP are not playing the game very fairly and that by getting him to view patients suffering severe illness as avoiding things by finding it hard to do appointments and finding life a bit difficult to deal with. He said I was being a bit negative when I said how gutted I was having another relapse after a tantalising glimpse of remission. Does he not understand that left me only feeling safe enough to get in that taxi because medical help would have been on standby should I get like I have been getting just walking to the toilet and back with emergency use of the nebuliser. I think I got more upset that last visit than I had actually cottoned on.
I wonder if hearing personal stories has an effect?
I wonder if the further away from the institutionalised decline in compassionate care of vulnerable people, the easier to ignore the suffering?
I wonder how the front line of the care givers cope with the new rules and policies they are being asked to follow? I see some struggle with it, it doesn't feel right but if they don't comply their job could be on the line.
I feel better having expressed that. I am also very in need of cwtching down under the duvet and letting go of the painful tensions in my body and ignoring the pain of lying down. Today I can breathe. I am capable of more than I have been used to being able to even consider without driving myself mad. I am not capable of doing everything I want and need to do. I'd prefer to already have done enough housework to be able to work and play with canvas and paint, to sell my crafts and enjoy interaction with other people without feeling dreadful or actually collapsing. I can't. I can however lose myself in a film and another chance to sleep and dream of being well enough to go off travelling and spending time with people I love.
Writing a public journal that is almost as shambolic as my life, does not mean I am fit to work, watching a film and staying awake doesn't mean I am fit for work. I am a human being. I am loved and I love people.
Tell me you government people, are you a human being too?
