Showing posts with label self esteem. Show all posts
Showing posts with label self esteem. Show all posts
Monday, 1 October 2012
things carers shouldn't do (but from experience have!)
- you should probably know what a sandwich is.
- it is surprisingly simple to avoid spraying someone's genitals at full force with a shower head.
- Being 4 hours late is not ok especially when the person you're working for hasn't eaten or been to the toilet. They need you there for a reason.
- 'I'm going on a night out' is not a good enough reason to turn up over an hour early.
- Pads do not go in the recycling (and your kids nappies shouldn't either!)
- If at first you fuck it up aim not to fuck up again, or again or...
- Let the person you're working for know that you have heard them.
- Remember the tasks you're asked to complete. If you forget, ask. Don't just leave.
- Don't walk away unless you're sure you've finished being spoken to.
- You have keys for a reason. Remember them and don't stand outside banging on the door for 40 minutes if you forget. It won't help.
- Think about portion size. Is 1 and a half tins of baked beans really necessary for one person?
- Talk to the person you work for. Ask them how they are. Seeing someone 3 times a day who only stares at you is pretty isolating. This will also make your job easier.
- Don't shout or insult the person you work for.
- Don't laugh at the person you work for. If you can't help it then at least explain why.
- Don't fall asleep on the job.
- Wear deodorant.
- If your feet keep getting wet, wear more suitable shoes or shoe covers - don't take your shoes off in the shower.
- How Mrs Jones likes her back washed is irrelevant. If someone says you're hurting them, listen.
- Avoid terms like 'change you', 'dress you', 'shower you' etc.
- Your mortgage and family problems are your own business. Your client is not a counsellor.
- Turn your mobile phone off. If you have to take an important call then say so. Don't just stand arguing on the phone in front of a client.
- Do not judge or guilt trip your client about their disability and how hard you perceive they are trying.
- If you break something, apologise - even if you don't think it was directly your fault.
Thursday, 2 August 2012
Rarr, just rarr.
Tonight I am incredibly angry and frustrated. Everything that I do to manage my own impairments and over all health is judged by the medical profession. No matter what I do, it will never be right.
I still have no diagnosis. I pretend this is ok but it isn't. The more time goes on the less likely ME seems (my provisional diagnosis). I want and need to know what this is in order to deal with it, in order to feel as if what I'm doing is the right thing.
I know that I shouldn't need validation for how I manage my own life but do I really deserve to be constantly judged?
It occurred to me the other day that my follow up appointments at the gender clinic are half an hour - more than double that of the first appointments I've had with each neurologist I've seen. At my last gender clinic appointment we mostly discussed how the psychiatrist liked my shoes and coat and that the tories were a bit mean and yet in a 10 minute outpatient neurology appointment a neurologist can supposedly change my entire medical record and make me sound like it's psychological and I'm resisting treatment.
If you don't know what it is, how do you have any basis for telling me how to manage it? It's my body and I know it best yet I am made to feel as if every single decision I make about how I pee, shower and move etc is somehting that warrants judging.
No doctor seems to understand how my symptoms interact - just that my walking can't be severe enough to use a wheelchair. Aren't they supposed to understand that walking is about more physical processes than just putting one foot in front of the other? 'Someone else is dealing with that I'm sure' is not an adequate answer. Neither should you make any judgements about me without taking in to consideration the whole of my health. Not least anything as damaging as suggesting it's psychological/psychiatric.
I have such mixed feelings about everything at the moment. I had a massively triggering conversation the other week about conversion disorder that has just thrown me off balance.
I've stopped self propelling which freed up a few 'spoons' which i used a few of on walking. Except even though the fluidity of my movements seems to be improving, I actually feel more ill. I'm not going to completely discount the fact my mobility might be improving but I do need to take better care of myself and not just use it as a means of proving things to myself/self harm.
I just wish I had answers.
I also need a GP that's willing to help me out in terms of letting me try various treatments.
My sleeping pattern is completely messed up. Why does everything just seem so horrible at the moment?
I still have no diagnosis. I pretend this is ok but it isn't. The more time goes on the less likely ME seems (my provisional diagnosis). I want and need to know what this is in order to deal with it, in order to feel as if what I'm doing is the right thing.
I know that I shouldn't need validation for how I manage my own life but do I really deserve to be constantly judged?
It occurred to me the other day that my follow up appointments at the gender clinic are half an hour - more than double that of the first appointments I've had with each neurologist I've seen. At my last gender clinic appointment we mostly discussed how the psychiatrist liked my shoes and coat and that the tories were a bit mean and yet in a 10 minute outpatient neurology appointment a neurologist can supposedly change my entire medical record and make me sound like it's psychological and I'm resisting treatment.
If you don't know what it is, how do you have any basis for telling me how to manage it? It's my body and I know it best yet I am made to feel as if every single decision I make about how I pee, shower and move etc is somehting that warrants judging.
No doctor seems to understand how my symptoms interact - just that my walking can't be severe enough to use a wheelchair. Aren't they supposed to understand that walking is about more physical processes than just putting one foot in front of the other? 'Someone else is dealing with that I'm sure' is not an adequate answer. Neither should you make any judgements about me without taking in to consideration the whole of my health. Not least anything as damaging as suggesting it's psychological/psychiatric.
I have such mixed feelings about everything at the moment. I had a massively triggering conversation the other week about conversion disorder that has just thrown me off balance.
I've stopped self propelling which freed up a few 'spoons' which i used a few of on walking. Except even though the fluidity of my movements seems to be improving, I actually feel more ill. I'm not going to completely discount the fact my mobility might be improving but I do need to take better care of myself and not just use it as a means of proving things to myself/self harm.
I just wish I had answers.
I also need a GP that's willing to help me out in terms of letting me try various treatments.
My sleeping pattern is completely messed up. Why does everything just seem so horrible at the moment?
Monday, 28 May 2012
Disability, gender, body image and generally hating everything
I've been meaning to write on the topic of disability and body image for quite some time. Of course, the intention was to write something eloquent that people would relate to - with a hint of academia to boot. Alas, no.
I generally think I'm quite good at dealing with this crip shit, but not today. Today it just really bloody hurts.
*trigger warning for transphobia and bad hospital experiences*
Also, this is a bit long I'm afraid but it's important for me to voice this.
You see, I've been filling in my DLA and ESA renewal forms. For those who don't know, DLA forms request an intrusive amount of information about things like how often you go to the toilet, how long it takes and what help you need. All fun stuff.
The thing is, I spend most of my time living - not counting the amount of times I shit. I also try and ignore a lot of the times I probably need assistance and try and pretend it's normal to put up with certain things. The thing is; it's not normal. DLA forms serve as a reminder that your care needs are not only higher than you originally thought, but that the chances of you getting those care needs met by social services or the NHS are slim to none.
That's right! You're a smelly cripple but we're not going to help with that - here's £20 a week compensation. p.s we ignored most of your needs anyway.
It's also pretty bloody impossible to fill in those forms and not feel like some degree of a fraud. After all, the daily mail says so! Last year I made myself very sick repeatedly attempting to walk short distances and timing it. The thinking went the lines of "Bugger! Today I managed to walk 5 metres in 2 minutes but I put 2 metres on the form! Will I get done for fraud? Am I taking money away from others? Am I just fat and useless?" I wish I was joking.
Today I had a doctors appointment in the same department of the same hospital on the anniversary of my month long stay in hospital last year. That stay was traumatic. I was accused of making things up, ignored by nurses leading to several completely avoidable embarrassing wet beds, told that one single test could decide whether I was telling the truth about my care needs and general treated like some crazy person who was making things up (because you know, mental health issues are something to ignore anyway.) That hospitalisation has left my medical records scarred and my body image in shreds.
In that hospital they taught me that I was worthless, that my care needs were worth nothing because I lacked the back up. On hearing my gender history my validity on a male ward was loudly questioned, calling the gender clinic psychiatrist became more of a concern than the fact I couldn't move or empty my bladder (13 hours in total without a non silicone catheter). I was assigned an endocrinologist (on the assumption gender is more relevant than impairment) and left writhing in pain when the urinary retention inevitably lead to infection, agonising abdominal pain and vomiting. After finally responding to my buzzer the nurse simply replaced the kidney dish without asking why I was vomiting. I had to buzz again to explain that this was not normal. Throughout the night I was told that the doctor was dealing with 'far more sick people' despite the fact if I was at home I would have called an ambulance by now. When I finally did see the doctor I was told I didn't need to catheterise, apparently just pushing on my bladder would do the trick!...because you know not pissing for 13 hours is normal let alone when you're partially incontinent....kinda weird for it not to find it's way out.
It's one year since I left hospital and I'm still feeling the affects. I have care but no care package which means no guarantee the care will last till tomorrow and no choice over whose hands wash me each day. Social services have no understanding of the need for a 'safe' carer when you're trans, autistic, have PTSD or have other body issues.
Arriving at the hospital today was enough to set my heart racing. Thankfully a quick stroke of the hand from an understanding friend and the reassurance that swearing at the nurses who mistreated me would be back up by them saw me through.
Then to urology. I'm fairly open about this stuff with my close friends and perfectly able to be lighthearted about it but there's still that voice at the back of my mind saying "you're not good enough. You're not adult. you're disgusting."
Then there's the nerves about potentially disclosing and the inevitable:
"so when were you diagnosed with MS"
"urm, I don't have MS, I have a diagnosis of 'possible CFS'"
"So why do you use the wheelchair?"
*facepalm*
....it's like the diagnosis means everything. My experience of living without a diagnosis is one of being judged at every angle. Someone with MS can have exactly the same impairments as me. The only difference is an MRI scan.
Yet again I find myself emphasising the seriousness of the issue in order to get any on going monitoring, being careful to say "oh yes, thank you, that's really reassuring" when really I'm thinking "what the hell is wrong then?" and being careful not to mention specific issues that sound too damn weird to be believable. One day, I hope that even if my healthcare is not straight forward I can at least see the paranoia lifted and feel able to be honest.
Whilst feeling pretty damn awful about my body image already given that I feel infantalised, deligitamised and like a fraud I headed in to sainsburys. One comment was enough to knock me to rock bottom.
"yes madam?"
This has happened a lot since I started using a wheelchair. People don't look at me. As soon as they've looked they apologise and change to 'sir'. I feel bad. This shouldn't bother me. I happen to think gender is a massive undefinable blob but I also have to live in that blob. I know if I wasn't trans I'd probably shrug it off as me being a bit effeminate and him being a bit lazy....but I can't.
Those words just reminded me of everything atypical about my body and made me feel like I'm not good enough.
I wish I could say 'enough, no more.' but I can't because it's all so ingrained...and I'm not the only one. None of this stuff is anything to feel ashamed of but it's really hard to feel empowered about having a body that's different when you're constantly met with resistance and disgust.
I generally think I'm quite good at dealing with this crip shit, but not today. Today it just really bloody hurts.
*trigger warning for transphobia and bad hospital experiences*
Also, this is a bit long I'm afraid but it's important for me to voice this.
You see, I've been filling in my DLA and ESA renewal forms. For those who don't know, DLA forms request an intrusive amount of information about things like how often you go to the toilet, how long it takes and what help you need. All fun stuff.
The thing is, I spend most of my time living - not counting the amount of times I shit. I also try and ignore a lot of the times I probably need assistance and try and pretend it's normal to put up with certain things. The thing is; it's not normal. DLA forms serve as a reminder that your care needs are not only higher than you originally thought, but that the chances of you getting those care needs met by social services or the NHS are slim to none.
That's right! You're a smelly cripple but we're not going to help with that - here's £20 a week compensation. p.s we ignored most of your needs anyway.
It's also pretty bloody impossible to fill in those forms and not feel like some degree of a fraud. After all, the daily mail says so! Last year I made myself very sick repeatedly attempting to walk short distances and timing it. The thinking went the lines of "Bugger! Today I managed to walk 5 metres in 2 minutes but I put 2 metres on the form! Will I get done for fraud? Am I taking money away from others? Am I just fat and useless?" I wish I was joking.
Today I had a doctors appointment in the same department of the same hospital on the anniversary of my month long stay in hospital last year. That stay was traumatic. I was accused of making things up, ignored by nurses leading to several completely avoidable embarrassing wet beds, told that one single test could decide whether I was telling the truth about my care needs and general treated like some crazy person who was making things up (because you know, mental health issues are something to ignore anyway.) That hospitalisation has left my medical records scarred and my body image in shreds.
In that hospital they taught me that I was worthless, that my care needs were worth nothing because I lacked the back up. On hearing my gender history my validity on a male ward was loudly questioned, calling the gender clinic psychiatrist became more of a concern than the fact I couldn't move or empty my bladder (13 hours in total without a non silicone catheter). I was assigned an endocrinologist (on the assumption gender is more relevant than impairment) and left writhing in pain when the urinary retention inevitably lead to infection, agonising abdominal pain and vomiting. After finally responding to my buzzer the nurse simply replaced the kidney dish without asking why I was vomiting. I had to buzz again to explain that this was not normal. Throughout the night I was told that the doctor was dealing with 'far more sick people' despite the fact if I was at home I would have called an ambulance by now. When I finally did see the doctor I was told I didn't need to catheterise, apparently just pushing on my bladder would do the trick!...because you know not pissing for 13 hours is normal let alone when you're partially incontinent....kinda weird for it not to find it's way out.
It's one year since I left hospital and I'm still feeling the affects. I have care but no care package which means no guarantee the care will last till tomorrow and no choice over whose hands wash me each day. Social services have no understanding of the need for a 'safe' carer when you're trans, autistic, have PTSD or have other body issues.
Arriving at the hospital today was enough to set my heart racing. Thankfully a quick stroke of the hand from an understanding friend and the reassurance that swearing at the nurses who mistreated me would be back up by them saw me through.
Then to urology. I'm fairly open about this stuff with my close friends and perfectly able to be lighthearted about it but there's still that voice at the back of my mind saying "you're not good enough. You're not adult. you're disgusting."
Then there's the nerves about potentially disclosing and the inevitable:
"so when were you diagnosed with MS"
"urm, I don't have MS, I have a diagnosis of 'possible CFS'"
"So why do you use the wheelchair?"
*facepalm*
....it's like the diagnosis means everything. My experience of living without a diagnosis is one of being judged at every angle. Someone with MS can have exactly the same impairments as me. The only difference is an MRI scan.
Yet again I find myself emphasising the seriousness of the issue in order to get any on going monitoring, being careful to say "oh yes, thank you, that's really reassuring" when really I'm thinking "what the hell is wrong then?" and being careful not to mention specific issues that sound too damn weird to be believable. One day, I hope that even if my healthcare is not straight forward I can at least see the paranoia lifted and feel able to be honest.
Whilst feeling pretty damn awful about my body image already given that I feel infantalised, deligitamised and like a fraud I headed in to sainsburys. One comment was enough to knock me to rock bottom.
"yes madam?"
This has happened a lot since I started using a wheelchair. People don't look at me. As soon as they've looked they apologise and change to 'sir'. I feel bad. This shouldn't bother me. I happen to think gender is a massive undefinable blob but I also have to live in that blob. I know if I wasn't trans I'd probably shrug it off as me being a bit effeminate and him being a bit lazy....but I can't.
Those words just reminded me of everything atypical about my body and made me feel like I'm not good enough.
I wish I could say 'enough, no more.' but I can't because it's all so ingrained...and I'm not the only one. None of this stuff is anything to feel ashamed of but it's really hard to feel empowered about having a body that's different when you're constantly met with resistance and disgust.
Thursday, 26 April 2012
Independence
'Independent' is not a word many people would likely use for me these days, least of all doctors or social workers.
I have been repeatedly accused of becoming dependent on carers and this is (supposedly) the reason why I've been denied a personal budget or even an official support plan. As if denying me any support would be a route to 'independence' (rather than a route to hospitalisation). I've been made to feel lazy, a fraud, a scrounger and unworthy of 'their' money. This has now been going on for 16 months. This has left some deep scars to my self esteem and over all mental health and continues to grind me down - though thankfully I now posses more tools for dealing with this.
I've been so overwhelmed by all of this - by their accusations, their lies and abuse, that I've not really taken an objective look at just what I have achieved.
I have been repeatedly accused of becoming dependent on carers and this is (supposedly) the reason why I've been denied a personal budget or even an official support plan. As if denying me any support would be a route to 'independence' (rather than a route to hospitalisation). I've been made to feel lazy, a fraud, a scrounger and unworthy of 'their' money. This has now been going on for 16 months. This has left some deep scars to my self esteem and over all mental health and continues to grind me down - though thankfully I now posses more tools for dealing with this.
I've been so overwhelmed by all of this - by their accusations, their lies and abuse, that I've not really taken an objective look at just what I have achieved.
I have been fighting for 16 months to live independently, control my own care/assistance. I've been fighting for the right to take part in hobbies and volunteering with a view to further study. I've fought for a wheelchair. I spent a month in hospital fighting for my right to care on discharge despite the lies being spread about me by staff whilst there. That month was hell - but I still fought and left with care provision.
I live by myself. After being of no fixed address for 4 months I moved in to my own adapted property. I kept pushing and pushing until this was confirmed. Despite increasing impairment I refused to move in with parents 'until I'm better' because I knew realistically that time may never come and I would be stuck there with no financial means to move.
I am fighting for the correct level of benefits too, and fighting for a diagnosis.
I live by myself. After being of no fixed address for 4 months I moved in to my own adapted property. I kept pushing and pushing until this was confirmed. Despite increasing impairment I refused to move in with parents 'until I'm better' because I knew realistically that time may never come and I would be stuck there with no financial means to move.
I am fighting for the correct level of benefits too, and fighting for a diagnosis.
Looking at this objectively, there's no wonder I'm exhausted by it all and no wonder that my mental health has taken a beating. Many of these issues remain unsolved but one thing remains true:
I am sat in my own flat and whilst things may not be perfect, whilst the last 16 months have been hell, I have far more than 16 months ahead of myself to enjoy and I will keep fighting until I win the right to live the life I deserve to lead. This is something I should probably give myself credit for.
I think I'm far more independent than they will ever understand.
I am sat in my own flat and whilst things may not be perfect, whilst the last 16 months have been hell, I have far more than 16 months ahead of myself to enjoy and I will keep fighting until I win the right to live the life I deserve to lead. This is something I should probably give myself credit for.
I think I'm far more independent than they will ever understand.
Monday, 23 May 2011
"hope" - is it always a good thing?
I realise I've not posted in a while. I haven't had the spoons for writing anything that I would consider worthy of posting. However, it's 2.30am and my head is spinning with thoughts surrounding my future, triggered by recent issues regarding social care meaning that I am still without daily assistance.
Most of the people I know on chronic illness forums seem to base their own future hope and aspirations around being well. Amongst the majority of posters there is a fear of a future where they remain as ill or impaired as they are currently, or become worse. I beg to differ.
It's not that I do not want to be well because I do. I wish I could lose the odd physical sensations that interrupt my trail of thought and I definitely wish my cognition wasn't so restricted by fatigue and general messed up neurology. But, I can envisage a decent future for myself where I am still ill and impaired. I think this is important. I'm not going to waste the years and months away fixating on a falsely positive sense of "hope" to the detriment of any level of acceptance or adjustment.
So what are my fears for the future?
I'm scared that rather than my body and mind letting me down, it will be social services, the NHS and the government that does so.
I'm more scared of these services causing my impairments to progress than I am of the progression itself; because whilst I can accept nature taking its course, injustice is always hard to accept.
I'm worried that I will always be hyperaware of my impairments because "if I had adequate support I could have done that"
I'm worried that I will never be a performing musician or work again, not because my health prohibits it but because I have been denied the support necessary to complete daily tasks.
I'm worried about what all the above is/will do my self image and that by the time I'm awarded adequate support, my mental health problems will prevent me from doing the things I want to any way.
Hope is useful to keep yourself positive, but not to the detriment of fighting for your future.
Most of the people I know on chronic illness forums seem to base their own future hope and aspirations around being well. Amongst the majority of posters there is a fear of a future where they remain as ill or impaired as they are currently, or become worse. I beg to differ.
It's not that I do not want to be well because I do. I wish I could lose the odd physical sensations that interrupt my trail of thought and I definitely wish my cognition wasn't so restricted by fatigue and general messed up neurology. But, I can envisage a decent future for myself where I am still ill and impaired. I think this is important. I'm not going to waste the years and months away fixating on a falsely positive sense of "hope" to the detriment of any level of acceptance or adjustment.
So what are my fears for the future?
I'm scared that rather than my body and mind letting me down, it will be social services, the NHS and the government that does so.
I'm more scared of these services causing my impairments to progress than I am of the progression itself; because whilst I can accept nature taking its course, injustice is always hard to accept.
I'm worried that I will always be hyperaware of my impairments because "if I had adequate support I could have done that"
I'm worried that I will never be a performing musician or work again, not because my health prohibits it but because I have been denied the support necessary to complete daily tasks.
I'm worried about what all the above is/will do my self image and that by the time I'm awarded adequate support, my mental health problems will prevent me from doing the things I want to any way.
Hope is useful to keep yourself positive, but not to the detriment of fighting for your future.
Wednesday, 8 December 2010
Maybe it's not just the illness
I've been thinking about how being ill has effected the way I think about myself. I think I've been convincing myself that all of the crap in my life is because I am sick.
I became homeless because of illness...indirectly. I was getting crap from housemates at a time where I just couldn't cope. A lot of the hassle they were giving me was about the fact that I couldn't cope (and that me coping would make it all better), so it just hit a raw nerve. I was being told that I was perpetuating my illness at the same time the medical profession were making out everything was psychological. It was just too much. I need to remind myself that this is less about the illness itself and more about the things I have learned about other people and the medical profession. That's something I can learn from, illness is something I don't have so much control over.
I have been feeling as though my life is empty. Comparatively, it is. I can't work and my social life is greatly restricted. I am barely able to practice my musical instrument. Everything I do has repercussions, right down to making a cup of tea. But, I am also staying in someone elses pocket. I don't have access to my books, cds, dvds etc. My life would be just as restricted as it is now, but it fulfilling be a hell of a lot less boring and a lot more fulfilling if I had these things.
I have been feeling unattractive. Again, I came here with a weeks worth of things. I had one pair of comfy, ripped jeans. I have bought a few things but I just don't have access to all my nice clothes, and everyone needs a bit of vanity don't they? The other thing is that, I have lost a lot of muscle mass meaning I'm a bit flabby. I also spend a lot of time sitting down. If I had more clothing to choose from, I wouldn't be stuck with the stuff that doesn't fit so well.
The overall stress of being homeless is really taking a toll on me. I keep contacting the housing association but to no avail. If I didn't have so much bureacracy to deal with, if I had more time and space to rest, I think I would feel better illness wise too.
Let's see.
I became homeless because of illness...indirectly. I was getting crap from housemates at a time where I just couldn't cope. A lot of the hassle they were giving me was about the fact that I couldn't cope (and that me coping would make it all better), so it just hit a raw nerve. I was being told that I was perpetuating my illness at the same time the medical profession were making out everything was psychological. It was just too much. I need to remind myself that this is less about the illness itself and more about the things I have learned about other people and the medical profession. That's something I can learn from, illness is something I don't have so much control over.
I have been feeling as though my life is empty. Comparatively, it is. I can't work and my social life is greatly restricted. I am barely able to practice my musical instrument. Everything I do has repercussions, right down to making a cup of tea. But, I am also staying in someone elses pocket. I don't have access to my books, cds, dvds etc. My life would be just as restricted as it is now, but it fulfilling be a hell of a lot less boring and a lot more fulfilling if I had these things.
I have been feeling unattractive. Again, I came here with a weeks worth of things. I had one pair of comfy, ripped jeans. I have bought a few things but I just don't have access to all my nice clothes, and everyone needs a bit of vanity don't they? The other thing is that, I have lost a lot of muscle mass meaning I'm a bit flabby. I also spend a lot of time sitting down. If I had more clothing to choose from, I wouldn't be stuck with the stuff that doesn't fit so well.
The overall stress of being homeless is really taking a toll on me. I keep contacting the housing association but to no avail. If I didn't have so much bureacracy to deal with, if I had more time and space to rest, I think I would feel better illness wise too.
Let's see.
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