(no subject)
Dads parkinsons specialist doing a report for his work pushing medical retirement. Dad needs some personal care and at the moment risks getting stuck in a bathroom and needing his coworkers to rescue him
:( i feel so dissapointed that he not improved much on medication, the shakes are less severe on his left side but he is still loosing functional ability.
I hoped we would get some time at least before my mum having to start helping him out of chairs and bed sometimes. Walking is tireing for him and struggling into work is making him worse the rest of the day. He still can't drive properly. I can't really cope watching him get worse. I don't understand why so much has happened to my family,Can't do anything about it now though, only thing that matters is how we cope with it and move onwards,,,
I go away for a week on respite on Saturday. Chris is meeting me there so I get to spend the week with him. I just want to be looked after for a while and not have to accept that struggling with everything is normal or right, I need to move out more than ever. Dad risks injuring mum when she physically helps him (being 6ft 4 tall to her 5ft 3) and if mum is injured she will struggle even more looking after herself let alone cooking and looking after me.
I love my family but I find it hard to talk about. I want to say things but then I forget what Dad says I can talk about and what mum tells me but I’m not meant to really know about.
Sometimes I write but not as frequent, cognitively it is hard to get the same fire but when I have it is as potent as before but I can’t pretend to be creative anymore and I miss online friends but I’m not capable of running a poetry journal at this time, LJ and facebook are hard enough, and if it wasn’t for preprogrammed reminders I would forget totally what my email address is let alone my passwords.
I don’t know if surviving makes me a success or a failure, as sometimes I fail to do it very well. My sense of time is stretched and warped, weeks seem like days sometimes, I am in bed 12 hours at night, plus sleeping in the afternoon my ‘day’ is very short and then I don’t have much active time out of it.
I need a break. Chris can make me laugh until I cry then cry with me about serious stuff and be the person that can tell me its ok and that I don’t have to be a shield maiden to deal with every hurt.
I been on diet for months and so disappointed with self, mum lost over a stone and carer says I have lost weight but I hate it just the same. Secretly I just want a routine of making myself sick and lying about meals again so I feel in control and speed fuelling myself of chewing gum and diet coke.
At least I can snack better now we have loads of dried fruit stuff downstairs, and non sugared stuff as well.
I feel out of contact, so far away, I am touched when anyone remembers me. A postcard singed from 3 Guiding friends while they were in India is precious at the moment, even if not been able to say to them yet how thankful I am. It even came on the day Dad has his DAT scan. It was the DAT scan that confirmed the Parkinsons but we didn’t know that then.
I am a dissapointment, people ask me what I am doing or if I go to college and I say no one will help me arrange transport and care for me to do a college course and that I am constantly ill anyway and keep cruising on not much more than bruised will power and determination as it is.
I think being bedbound again would be a lot easier, but then I would not have made the friends I did last year, and my friends from respite have kept in contact so we talk online and call each other. I try and make memories, and push myself as far as I can go to do so. And hope that my carers and my mum can catch me if I fall to far afterwards.
I have a space for the Youth Week 2010 at Jubille Lodge, and two of my friends are going back there so looking forward to it.
But for now it is this week, and the tears I know I am going to have once I have left everything behind at home and I just become another disabled person in a large group but for once I can call Chris my boyfriend properly when we are together.
When I do move out my place will be fully accessible so Chris could come to visit or stay, at the moment he can’t use my parents house and I can’t travel to Cornwall (over 8 hours journey between us)
I miss everyone, I’m sorry :(
:( i feel so dissapointed that he not improved much on medication, the shakes are less severe on his left side but he is still loosing functional ability.
I hoped we would get some time at least before my mum having to start helping him out of chairs and bed sometimes. Walking is tireing for him and struggling into work is making him worse the rest of the day. He still can't drive properly. I can't really cope watching him get worse. I don't understand why so much has happened to my family,Can't do anything about it now though, only thing that matters is how we cope with it and move onwards,,,
I go away for a week on respite on Saturday. Chris is meeting me there so I get to spend the week with him. I just want to be looked after for a while and not have to accept that struggling with everything is normal or right, I need to move out more than ever. Dad risks injuring mum when she physically helps him (being 6ft 4 tall to her 5ft 3) and if mum is injured she will struggle even more looking after herself let alone cooking and looking after me.
I love my family but I find it hard to talk about. I want to say things but then I forget what Dad says I can talk about and what mum tells me but I’m not meant to really know about.
Sometimes I write but not as frequent, cognitively it is hard to get the same fire but when I have it is as potent as before but I can’t pretend to be creative anymore and I miss online friends but I’m not capable of running a poetry journal at this time, LJ and facebook are hard enough, and if it wasn’t for preprogrammed reminders I would forget totally what my email address is let alone my passwords.
I don’t know if surviving makes me a success or a failure, as sometimes I fail to do it very well. My sense of time is stretched and warped, weeks seem like days sometimes, I am in bed 12 hours at night, plus sleeping in the afternoon my ‘day’ is very short and then I don’t have much active time out of it.
I need a break. Chris can make me laugh until I cry then cry with me about serious stuff and be the person that can tell me its ok and that I don’t have to be a shield maiden to deal with every hurt.
I been on diet for months and so disappointed with self, mum lost over a stone and carer says I have lost weight but I hate it just the same. Secretly I just want a routine of making myself sick and lying about meals again so I feel in control and speed fuelling myself of chewing gum and diet coke.
At least I can snack better now we have loads of dried fruit stuff downstairs, and non sugared stuff as well.
I feel out of contact, so far away, I am touched when anyone remembers me. A postcard singed from 3 Guiding friends while they were in India is precious at the moment, even if not been able to say to them yet how thankful I am. It even came on the day Dad has his DAT scan. It was the DAT scan that confirmed the Parkinsons but we didn’t know that then.
I am a dissapointment, people ask me what I am doing or if I go to college and I say no one will help me arrange transport and care for me to do a college course and that I am constantly ill anyway and keep cruising on not much more than bruised will power and determination as it is.
I think being bedbound again would be a lot easier, but then I would not have made the friends I did last year, and my friends from respite have kept in contact so we talk online and call each other. I try and make memories, and push myself as far as I can go to do so. And hope that my carers and my mum can catch me if I fall to far afterwards.
I have a space for the Youth Week 2010 at Jubille Lodge, and two of my friends are going back there so looking forward to it.
But for now it is this week, and the tears I know I am going to have once I have left everything behind at home and I just become another disabled person in a large group but for once I can call Chris my boyfriend properly when we are together.
When I do move out my place will be fully accessible so Chris could come to visit or stay, at the moment he can’t use my parents house and I can’t travel to Cornwall (over 8 hours journey between us)
I miss everyone, I’m sorry :(