Return of the Borg - Life on a ventilator
01/May/2013 03:26 PM Filed in: Health | Independent living
My blogg post for BADD (Blogging against disablism) 2013….
Return of the Borg - Life on a ventilator (and other machines!)
Welcome to my blog post about how machines have become integrated into my body.
I will explore body image and what life is like relying on machines to live and breathe ….
I always knew that having a progressive type of impairment meant that I would need an array of disability related equipment in day to day life. At first these were fairly low tech thingy-whatsits. Things like off the shelf wheelchairs to act as my legs and so forth. However, as my muscles weakened I moved into the hard core disability category of 'custom designs' and 'extra special' or 'bespoke'. I can't just sit in any old wheelchair now - every part of it has to be altered or made for me to fit my limited mobility and unilateral (wonky to you and me) spine.
Body modification
My wheelchair, including every last motor, bolt and bracket and cushion, became part of my body (as much a part as skin and bone) in the early 1990's. Body modification for me is getting a new arm rest, head rest, foot plate, motor control unit….. I became part Borg very early on in life. This is my identity - my wheelchair parts are part of 'me' - a human machine or cybernetic entity - and I love it.
You might get a tattoo - I get a spray paint job. You get a nose pierced and I get a new metal attachment for a headrest. It's what people see, it says who I am, it is part of my visual identity with a very practical purpose.
Without my 'shell' of my chair my body is motionless, silent, innanimate, maybe looking less human? I feel like a stranded turtle flipped onto it's back, dependent, immobile, weak in body, vulnerable.
I have known what it is to be just flesh and bones because I used to walk, bend, reach, stretch and stand without technology. Some people don't want to let the machines in …. they resist assimilation. As every great Borg drone knows… resistance is futile. You can try and fight, refuse techological help and support to fit in with the 'normalised'. Before long though your body will be demand it. You will have to embrace your new identity or die trying to resist. Some take their own lives, others adapt and have a life worth living. Fight all you want but you won't win.
We are one...
I sit tall with the rest of the collective - others who have allowed the amalgamation of man, woman and machine. We grow stonger, working together towards the ultimate Borg goal of achieving perfection as a single unit. I am part of a great number of wheelchair users who come together to share our experiences, our cybernetic lives and problem solve in unique ways. A great disability community of people who truly understand, supporting each other, problem solving together and living varied and dynamic lives. We drool over each other's chairs and peripherals and long for even more tech - more movement - more interaction. These are not luxuries but necessities. Some will delve into the world of assembling their own body parts - building their own chairs and programming their own devices. Free from the restraint of legislation and post code lotteries - it's not a cheap option but a custom build might be the only way to go to achieve the life of your choice. Professionals will frown at us, tell us off like naughty school children and inform us it's too risky and the modifications havn't passed x,y and z safety tests. We are not playing with Mechano here. We are skilled programmers, engineers, scientists and inventors ….. using our knowledge to better ourselves, our comfort, our dignity and independence. A lot is at stake and the risk is worth taking.
When machines take over ...
Whilst the equipment and personal assistance I have helps me to live - it is some extra pieces of kit that literally keep me alive.
Muscular dystrophy (at least the type I have which is similar to the more familiar Duchenne) effects the muscles that are involved with breathing. Whilst my lungs are healthy, this is no use if you can't suck air into them or push it out when you need to (like coughing for example). What happens is that the Carbon Dioxide your body normally exhales, is retained in your cells. It acts as a poison, makes you sleepy, feel short of breathe, have memory loss and cognitive problems to name but a few. It eventually kills you. At night our body and breathing slows down naturally as we sleep - mine slowed to a stop. Full stop.
Two years ago I had respiratory failure, my muscles gradually ground to a halt so that I wasn't breathing enough when I was asleep (this is different to sleep apnea). My CO2 was sky high. Within less than a month I couldn't breath once I lay down (gravity saw to that).
My transformation to both woman and machine reached a new stage as I started using a ventilator to breath for me. The machine was a bilevel positive pressure machine - it blows room air into my lungs at a certain pressure, then drops the pressure so that my lungs can collapse with gravity (and the help of large boobs) and I can exhale. It's not giving me oxygen and it's not keeping my throat open (common misconceptions).
Air comes in via a mask (one that covers my face at night), or one that plugs into my nose during the day!
I can talk (on the exhale) and so people have to be patient as there is a pause in my speech as the machine blows up my lungs.
One of the things people have to get used to (overnight sometimes), is a new look. No matter what people say, you will look blindingly different with a mask over your face or up your nose.
Q1. Do I sound like Darth Vader? No - my machine has a gentle swish noise when it blows so sorry to disappoint. You can't hear it when the TV is on or anything!
Q2. Do you look a bit like an elephant with a trunk? Yes, but unlike an elephant I can't use it as a snorkel underwater. In fact, getting water up your vent pipe is not very pleasant as on the inhale the water sprays out the breathing exhale holes like a sprinkler system!
Q3. What does it feel like? Stick your head out of the sun roof from a car driving at 70 mph up the motorway - feel the air rushing into your lungs forcing you to take a deep breathe… that is how it feels. It's actually quite gentle and the air feels great and refreshing. It doesn't hurt having air go in and out but the masks can hurt a bit.
Q4. Do you have lung failure? No, I have respiratory failure. My lungs are good but my gas exchange isn't because of a mechanical failure.
Q5. Do people stare at me? Not that I've seen - I'm too busy doing 'stuff' rather than looking to see if other people are watching me! I like it when people look and ask - because humans are curious creatures. A short explanation can cure a life time of curious stares.
Q6. Are people on ventilators nearly dead or dying? Ehm, that depends on why they need a ventilator. I have a progressive, life shortening impairment where the rest of my body is deteriorating anyway. If it was just a mechanical failure and the rest of their body was good, a person could live for many decades (if they have good respiratory management and health care). So, they could work full time, have a family and do the same stuff they did when they could breathe. I know lots of people using assisted breathing who do just that.
Q7. Does it effect a person's brain or intellect? A ventilator is just doing mechanically what the person can't do themselves (take a breath) - it doesn't effect your brain! If the person was being an ass before they used a vent - chances are the person will still be an ass when ventilated.
Q8. How does it effect day to day life? Well you can't really snog anyone very well with a nasal pillow (the tubes up your nose) - and not at all with a mask covering your face. It takes about an hour to prepare padding around my face, irrigate my nose and get my mask on and into a sleeping position - so going to bed takes forever. I panicked a lot when it was stormy in case the power went out (and for 6 months the NHS didn't even give me any battery back up). Now we would wake up to the 'battery kicked in' alarm.
I have had some modifcations to my chair to hang my vent on for travelling as I use it all the time in the car and when out and about. My battery lasts 7-8 hours so I can't be out longer than that.
Other than that there is no change to my day to day life on none invasive ventilation.
Q9. Any advantages in using a vent? Yes, I am kept alive. Secondly I had lost a good sense of smell (because smelling things relies on pulling air in through your nose at a certain speed) and now all smells are very intense. The first intense smell I had from my vent was in a service station parked outside a cornish pasty van - the smell was divine. I like sticking smelly candles and oranges by my air inlet valve on the machine for great pleasure.
Change, adapt, readapt…. beauty is a beast.
Around the various on-line forums are people who say they 'hate' their chairs and refuse equipment like ventilators that might keep them alive. Why? Isn't being able to move from A to B better than just sitting in a static chair all day? If there is equipment that will breath for you - isn't this better than gasping your last breaths and organising your funeral?
Psychologically it can take people years to adapt or it can happen instantly. That is the human element in this story. Being attached to machines can severly alter our appearance and mean we have to adapt to a slightly different lifestyle or reassess the meaning of personal dignity and identity. In a world where we are told what makes us beautiful, it is sad that so many people choose to die or experience severe depression and loss of self esteem because they need to deviate from such imagery.
People who insist they will look ugly and conclude they therefore will be unlikable or less human are risking their lives by refusing equipment or surgeries that alter appearance. Others never want to leave their home because of what people might say or fear of being stared at.
They are putting up barriers to getting on in life because someone else has convinced them they must look a certain way - and that is a shame on society.
Return of the Borg - Life on a ventilator (and other machines!)
Welcome to my blog post about how machines have become integrated into my body.
I will explore body image and what life is like relying on machines to live and breathe ….
Body modification
My wheelchair, including every last motor, bolt and bracket and cushion, became part of my body (as much a part as skin and bone) in the early 1990's. Body modification for me is getting a new arm rest, head rest, foot plate, motor control unit….. I became part Borg very early on in life. This is my identity - my wheelchair parts are part of 'me' - a human machine or cybernetic entity - and I love it.
You might get a tattoo - I get a spray paint job. You get a nose pierced and I get a new metal attachment for a headrest. It's what people see, it says who I am, it is part of my visual identity with a very practical purpose.
Without my 'shell' of my chair my body is motionless, silent, innanimate, maybe looking less human? I feel like a stranded turtle flipped onto it's back, dependent, immobile, weak in body, vulnerable.
I have known what it is to be just flesh and bones because I used to walk, bend, reach, stretch and stand without technology. Some people don't want to let the machines in …. they resist assimilation. As every great Borg drone knows… resistance is futile. You can try and fight, refuse techological help and support to fit in with the 'normalised'. Before long though your body will be demand it. You will have to embrace your new identity or die trying to resist. Some take their own lives, others adapt and have a life worth living. Fight all you want but you won't win.
We are one...
When machines take over ...
Whilst the equipment and personal assistance I have helps me to live - it is some extra pieces of kit that literally keep me alive.
Two years ago I had respiratory failure, my muscles gradually ground to a halt so that I wasn't breathing enough when I was asleep (this is different to sleep apnea). My CO2 was sky high. Within less than a month I couldn't breath once I lay down (gravity saw to that).
My transformation to both woman and machine reached a new stage as I started using a ventilator to breath for me. The machine was a bilevel positive pressure machine - it blows room air into my lungs at a certain pressure, then drops the pressure so that my lungs can collapse with gravity (and the help of large boobs) and I can exhale. It's not giving me oxygen and it's not keeping my throat open (common misconceptions).
Air comes in via a mask (one that covers my face at night), or one that plugs into my nose during the day!
I can talk (on the exhale) and so people have to be patient as there is a pause in my speech as the machine blows up my lungs.
One of the things people have to get used to (overnight sometimes), is a new look. No matter what people say, you will look blindingly different with a mask over your face or up your nose.
Q1. Do I sound like Darth Vader? No - my machine has a gentle swish noise when it blows so sorry to disappoint. You can't hear it when the TV is on or anything!
Q2. Do you look a bit like an elephant with a trunk? Yes, but unlike an elephant I can't use it as a snorkel underwater. In fact, getting water up your vent pipe is not very pleasant as on the inhale the water sprays out the breathing exhale holes like a sprinkler system!
Q3. What does it feel like? Stick your head out of the sun roof from a car driving at 70 mph up the motorway - feel the air rushing into your lungs forcing you to take a deep breathe… that is how it feels. It's actually quite gentle and the air feels great and refreshing. It doesn't hurt having air go in and out but the masks can hurt a bit.
Q4. Do you have lung failure? No, I have respiratory failure. My lungs are good but my gas exchange isn't because of a mechanical failure.
Q5. Do people stare at me? Not that I've seen - I'm too busy doing 'stuff' rather than looking to see if other people are watching me! I like it when people look and ask - because humans are curious creatures. A short explanation can cure a life time of curious stares.
Q6. Are people on ventilators nearly dead or dying? Ehm, that depends on why they need a ventilator. I have a progressive, life shortening impairment where the rest of my body is deteriorating anyway. If it was just a mechanical failure and the rest of their body was good, a person could live for many decades (if they have good respiratory management and health care). So, they could work full time, have a family and do the same stuff they did when they could breathe. I know lots of people using assisted breathing who do just that.
Q7. Does it effect a person's brain or intellect? A ventilator is just doing mechanically what the person can't do themselves (take a breath) - it doesn't effect your brain! If the person was being an ass before they used a vent - chances are the person will still be an ass when ventilated.
Q8. How does it effect day to day life? Well you can't really snog anyone very well with a nasal pillow (the tubes up your nose) - and not at all with a mask covering your face. It takes about an hour to prepare padding around my face, irrigate my nose and get my mask on and into a sleeping position - so going to bed takes forever. I panicked a lot when it was stormy in case the power went out (and for 6 months the NHS didn't even give me any battery back up). Now we would wake up to the 'battery kicked in' alarm.
I have had some modifcations to my chair to hang my vent on for travelling as I use it all the time in the car and when out and about. My battery lasts 7-8 hours so I can't be out longer than that.
Other than that there is no change to my day to day life on none invasive ventilation.
Q9. Any advantages in using a vent? Yes, I am kept alive. Secondly I had lost a good sense of smell (because smelling things relies on pulling air in through your nose at a certain speed) and now all smells are very intense. The first intense smell I had from my vent was in a service station parked outside a cornish pasty van - the smell was divine. I like sticking smelly candles and oranges by my air inlet valve on the machine for great pleasure.
Change, adapt, readapt…. beauty is a beast.
Psychologically it can take people years to adapt or it can happen instantly. That is the human element in this story. Being attached to machines can severly alter our appearance and mean we have to adapt to a slightly different lifestyle or reassess the meaning of personal dignity and identity. In a world where we are told what makes us beautiful, it is sad that so many people choose to die or experience severe depression and loss of self esteem because they need to deviate from such imagery.
People who insist they will look ugly and conclude they therefore will be unlikable or less human are risking their lives by refusing equipment or surgeries that alter appearance. Others never want to leave their home because of what people might say or fear of being stared at.
They are putting up barriers to getting on in life because someone else has convinced them they must look a certain way - and that is a shame on society.
Clothing impaired
21/February/2013 03:26 PM Filed in: Independent living
I am clothing impaired.
This blog article is about how my views on clothing and fashion have been modified by my wonky body.
I like clothes of course but I don't care about fashion or the next must have colour or brand. Perhaps it's just as well because my body has never allowed me to wear clothes that are in keeping with my age or the latest trends. I have always worn what has been affordable (i.e. cheap) and practical - the colour or style is irrelevant.
I have scoliosis (so my spine is bent and twisted) and my muscles don't hold my bones together so I have practically no muscle tone - I am a bit like a bag of jelly with some bones and organs laying in unusual places.
The fact that someone has an impairment doesn't mean they have to go round looking neglected and frumpy in the clothing department. We can look stylish, smart or sexy to suit the occassion - well up to a point.
Teen Identity
You see, when I was a teen and could dress myself a bit - my mother chose all the clothes for me pretty much to the day I left for University. We didn't have a wheelchair accessible vehicle and for a while I didn't even have a wheelchair - so I rarely went out apart from on holiday.
I had to wear embroidered blouses that were straight out of a catalogue for the over 60's just because they were the only thing baggy enough with buttons down the front. Some of them I liked - but they weren't chosen by me. Thank goodness for school uniform - although I was the only one in the school who, age 17, wore a black dress made by their mother with poppers all the way down the front. All the other girls either refused to wear uniform or fashioned their shirt and school skirt look on revealing as much flesh as possible.
I was different and it showed in a very visual way.
Eventually I took to wearing black 'jogger' trousers which kept me warmer and were easier to get on. However, they edged me closer to the classic 'day centre' look.
I struggled pulling up knickers as I couldn't reach down - so ended up trying ones with Velco down each side from the JD William's catalogue for the old and incontinent. They were itchy and made a loud crackle noise as I walked/waggled with my uneven gait - this added nothing to my dignity.
As a young woman
When I was at University I bought clothes for myself, for the first time. I gathered a wardrobe full of stuff and discovered that I only ever wore one or two things - the rest were just too hard to get into or too uncomfortable. I remember one particular day I tried on a sexy figure hugging top in TKmax - It felt really good but then I looked in the mirror. I stared in dismay at my wonky body, curvy in all the wrong areas and so back on the shelf it went. I suddenly realised how bad some clothes looked on me. I'm not trying to hide my curvy spine - but this was not a good look at all. I could do a lot better and it took me a good 20 minutes just to get it on! I nearly had to buy the darn thing when it wouldn't come off. My PA pushed and pulled my arms struggling to get it off, cringing at the snap of cotton thread occuring around the arms. It was a nightmare.
It's not easy dressing a floppy adult so I resigned myself to baggy comfy clothes as much as possible. I do draw the line at the 'day centre' look. This is the compulsory track suit 'jogger' type outfit that is two sizes too big for you and usually comes in baby pink or blue. It's an outfit that is often chosen by carers for ease of dressing and looks dreadful.
Social Norms - thou shalt wear shoes
Clothes are supposed to be part of your identity or culture - not sure what my wardrobe says about me.
I have tons of clothes and shoes but gradually more and more of them have become difficult or impossible to put on (or for others to put them on me). Ironically I have tons of shoes but never wear any because they skate of my footplates and my legs fly of the side like bambi (and they can hurt because my ankles don't bend and my feet point in strange directions). I have ahad some success with sandals but I generally only wear shoes if my thermal socks aren't enough to keep me warm. I no longer care what I look like because warmth and comfort is everything.
People at work seemed to have a hard time getting used to a member of staff who didn't wear shoes and largely went around in bare feet. When your feet don't even touch the ground the need to wear shoes is purely for warmth or complying with social norms. They hold no practical purpose. People who walk find this hard to deal with. Society has a rule though that you should wear shoes in the UK and care about how your feet look - even if you just wear a sandal that shows the same amount of foot as no shoes at all!! It's ridiculous! Some of my PAs from other countries and cultures didn't see it as unusual as shoes didn't hold the same social status for them - many of my PAs from Africa regularly walked everywhere bare foot. This was so refreshing not to get frowned at for displaying feet!
All change - no clothes at all!
Last year I started using a hoist and that meant never wearing trousers again during the day. We tried but it involved far to much pushing, shoving, ripping and discomfort. I had stopped wearing knickers a long time ago - just to difficult to get on and very sore to sit on all day. I stopped wearing bras because even the slightest pressure on my lungs stops me breathing unless I use my ventilator. Now, I couldn't wear trousers so very soon I would have to turn into a naturist.
The only option was to have a skirt made that was a wrap around one, with no seams on the seat (skirt back) and a return to poppers for fastenings. I bought some skirts from EBay but a normal wrap skirt is not comfortable and changes shape when seated. I needed to be able to drap the skirt over my chair, hoist and sit on it, then wrap and fasten. Too long and it would get caught in my front castors. Too short and I might get done for flashing.
I met with a local dressmaker, we went through the design and she seemed very positive she could do it. She never got back to me with the promised fabrics or finished design. In the end (six months later), my mum-in-law made me a skirt out of a warm fleece (alas the only pattern in the shop was Tarten). I have pretty much worn this skirt every day since. It's my only one and I love it. I have another from a lovely fabric I chose and a few more on their way.
When I don't use my hoist (with my husband) I sometimes wear trousers but these will be what I wear until the day I die. I am just relieved I have something.
This blog article is about how my views on clothing and fashion have been modified by my wonky body.
I like clothes of course but I don't care about fashion or the next must have colour or brand. Perhaps it's just as well because my body has never allowed me to wear clothes that are in keeping with my age or the latest trends. I have always worn what has been affordable (i.e. cheap) and practical - the colour or style is irrelevant.
I have scoliosis (so my spine is bent and twisted) and my muscles don't hold my bones together so I have practically no muscle tone - I am a bit like a bag of jelly with some bones and organs laying in unusual places.
The fact that someone has an impairment doesn't mean they have to go round looking neglected and frumpy in the clothing department. We can look stylish, smart or sexy to suit the occassion - well up to a point.
Teen Identity
You see, when I was a teen and could dress myself a bit - my mother chose all the clothes for me pretty much to the day I left for University. We didn't have a wheelchair accessible vehicle and for a while I didn't even have a wheelchair - so I rarely went out apart from on holiday.
I had to wear embroidered blouses that were straight out of a catalogue for the over 60's just because they were the only thing baggy enough with buttons down the front. Some of them I liked - but they weren't chosen by me. Thank goodness for school uniform - although I was the only one in the school who, age 17, wore a black dress made by their mother with poppers all the way down the front. All the other girls either refused to wear uniform or fashioned their shirt and school skirt look on revealing as much flesh as possible.
I was different and it showed in a very visual way.
Eventually I took to wearing black 'jogger' trousers which kept me warmer and were easier to get on. However, they edged me closer to the classic 'day centre' look.
I struggled pulling up knickers as I couldn't reach down - so ended up trying ones with Velco down each side from the JD William's catalogue for the old and incontinent. They were itchy and made a loud crackle noise as I walked/waggled with my uneven gait - this added nothing to my dignity.
As a young woman
When I was at University I bought clothes for myself, for the first time. I gathered a wardrobe full of stuff and discovered that I only ever wore one or two things - the rest were just too hard to get into or too uncomfortable. I remember one particular day I tried on a sexy figure hugging top in TKmax - It felt really good but then I looked in the mirror. I stared in dismay at my wonky body, curvy in all the wrong areas and so back on the shelf it went. I suddenly realised how bad some clothes looked on me. I'm not trying to hide my curvy spine - but this was not a good look at all. I could do a lot better and it took me a good 20 minutes just to get it on! I nearly had to buy the darn thing when it wouldn't come off. My PA pushed and pulled my arms struggling to get it off, cringing at the snap of cotton thread occuring around the arms. It was a nightmare.
It's not easy dressing a floppy adult so I resigned myself to baggy comfy clothes as much as possible. I do draw the line at the 'day centre' look. This is the compulsory track suit 'jogger' type outfit that is two sizes too big for you and usually comes in baby pink or blue. It's an outfit that is often chosen by carers for ease of dressing and looks dreadful.
Social Norms - thou shalt wear shoes
Clothes are supposed to be part of your identity or culture - not sure what my wardrobe says about me.
I have tons of clothes and shoes but gradually more and more of them have become difficult or impossible to put on (or for others to put them on me). Ironically I have tons of shoes but never wear any because they skate of my footplates and my legs fly of the side like bambi (and they can hurt because my ankles don't bend and my feet point in strange directions). I have ahad some success with sandals but I generally only wear shoes if my thermal socks aren't enough to keep me warm. I no longer care what I look like because warmth and comfort is everything.
People at work seemed to have a hard time getting used to a member of staff who didn't wear shoes and largely went around in bare feet. When your feet don't even touch the ground the need to wear shoes is purely for warmth or complying with social norms. They hold no practical purpose. People who walk find this hard to deal with. Society has a rule though that you should wear shoes in the UK and care about how your feet look - even if you just wear a sandal that shows the same amount of foot as no shoes at all!! It's ridiculous! Some of my PAs from other countries and cultures didn't see it as unusual as shoes didn't hold the same social status for them - many of my PAs from Africa regularly walked everywhere bare foot. This was so refreshing not to get frowned at for displaying feet!
All change - no clothes at all!
Last year I started using a hoist and that meant never wearing trousers again during the day. We tried but it involved far to much pushing, shoving, ripping and discomfort. I had stopped wearing knickers a long time ago - just to difficult to get on and very sore to sit on all day. I stopped wearing bras because even the slightest pressure on my lungs stops me breathing unless I use my ventilator. Now, I couldn't wear trousers so very soon I would have to turn into a naturist.
The only option was to have a skirt made that was a wrap around one, with no seams on the seat (skirt back) and a return to poppers for fastenings. I bought some skirts from EBay but a normal wrap skirt is not comfortable and changes shape when seated. I needed to be able to drap the skirt over my chair, hoist and sit on it, then wrap and fasten. Too long and it would get caught in my front castors. Too short and I might get done for flashing.
I met with a local dressmaker, we went through the design and she seemed very positive she could do it. She never got back to me with the promised fabrics or finished design. In the end (six months later), my mum-in-law made me a skirt out of a warm fleece (alas the only pattern in the shop was Tarten). I have pretty much worn this skirt every day since. It's my only one and I love it. I have another from a lovely fabric I chose and a few more on their way.
When I don't use my hoist (with my husband) I sometimes wear trousers but these will be what I wear until the day I die. I am just relieved I have something.
A year on: January
15/January/2013 03:26 PM Filed in: One year on
I'm going to write a summary of each month of 2013 - and compare it with the same month last year (which had some of the biggest life changing moments so far).
Family life
Just before Christmas my father-in-law died. He took his own life after many years of living with mental health problems. A suicide bereavement is particularly hard on everyone. It was a great shock. We celebrated the time he was able to share with us at a lovely funeral and I crafted a tag for him just like I did for my grandparents. The month was filled with lots of tears, prayers and difficult days. One person said suicide is 'selfish'. They are wrong. Is dying of cancer selfish? Dying from an illness it not selfish.
It's sad that so many people do not understand mental health. However, there is no shame and when talking about it with people they often share stories of their friends and family who lost their lives in the same way. You want to be the only person this has happened to because it hurts so much - at the same time it's comforting that there are people who understand and have been through the same thing.
Pets and Wildlife
January brought some great wildlife watching opportunities with Borris Box looking hopeful for a our nesting blue tit, Borris.
I also had fun with my new aquarium that now had my first pet shrimps - Shrimpy 1 (a Tiger Shrimp) and Shrimpy 2 (A Cherry Red).
Harvey Pig also tried on some hats lol.
Health
I started the year with a huge pressure sore on the top of my nose and marks all over my face (from my BIPAP face mask).
I sewed some velcro onto a ribbon to tie around the head bar of my mask to attach to my head cap. This stopped it hanging down on my nose all night.
January 31st and I was in the Royal Brompton Hospital in London for a sleep study. I'd been feeling sleepy and 'drunk' so my ventilation wasn't right. It was a dreadful night of lots of pain trying to use a commode without pressure relief (even though I'd requested it) we vowed never to go again unless I was dying. The food was also dire - this is supposed to be a fresh bread roll - one slice of dry value white bread. This was to go with the greasy, tastless bolognese that was basically spaghetti in gravy.
Cooking
I started making cakes :-) (well giving my PA directions anyway).
Family
A year on and we finaly get the inquest and a verdict of suicide so that's something positive. We have been planning and booking holidays and are going to aim for a week on the Isle of Wight (I've not been there before) and my husband needs a ship and bridge fix (so we will be going to Bristol and Bath). This year I'd also like to go to Trentham and Chester Zoo so watch this space!!
We had our first glimpse of snow
Pets and Wildlife
I had a remote camera pan and tilt for Christmas and I am now in control of my web cam view that usually points at the fish tank or out of the window. I've enjoyed watching shrimps on my computer without having to turn my head all the time.
I tend not to go out in the cold months and I'm currently hibernating. I am rather enjoying going on safari to Africa thanks to the BBC and a HD tv :-). Here are some of my pictures lol.
Piggies are all happy and well and look who showed up (I'm still going to call him Borris even though it might not be him!)
Borris video.
Health
Well, I started this year looking a lot better than last January! Since using a head cap and velcro ribbon I've had no sores on my nose and only the odd ones on my cheeks and forehead. This is a step in the right direction.
I sleep about 12-13 hours a day and pop my vent on at night if I'm feeling puffy. This is a big change from last year when I could only stay in bed about 7 hours due to my husband having to get me up before work.
Now I have a PA who comes in the mornings to stay with me and I can get the sleep my body needs. It means I have a lot more energy and I'm alert for the time I am up (rather than just living like a sleepy zombie).
I'm still trying to get hold of an Arctic profiling bed that I have been trying to get since July 2010 to reduce the pain, cramps and pressure sores from not being able to move in bed. Looks like I will putting in a formal complaint.
Our Biobidet decided to break down which is a real problem when you can't wipe yourself :-/
On the up side - I got to try out my wheelchair from the NHS to do a fitting session. It's gone back to the workshop for more work and the next step will be to go to them and try out cushions. My next kit-chair is also doing good and we only have a few more bits to do until I can sit in it in the evening. At the moment though the bidet is the priority - more things for hubs to fix :-/ .
Cooking
I'm loving cooking and baking - and for Christmas I was giddy over getting my crockpot. In fact, I was so excited I couldn't sleep the night before I first used it!
It's the one thing I can do for my husband - prepare a meal!
I have to direct PA's but it's great fun. So far this month I've made a BBQ beef casserole, chicken paprika, peanut chicken, Louisianna Beef Chilli and Mexican Bean and Sausage casserole. I've also baked scones and cake 'things'.
January 2012
Family life
It's sad that so many people do not understand mental health. However, there is no shame and when talking about it with people they often share stories of their friends and family who lost their lives in the same way. You want to be the only person this has happened to because it hurts so much - at the same time it's comforting that there are people who understand and have been through the same thing.
Pets and Wildlife
January brought some great wildlife watching opportunities with Borris Box looking hopeful for a our nesting blue tit, Borris.
I also had fun with my new aquarium that now had my first pet shrimps - Shrimpy 1 (a Tiger Shrimp) and Shrimpy 2 (A Cherry Red).
Harvey Pig also tried on some hats lol.
Health
I started the year with a huge pressure sore on the top of my nose and marks all over my face (from my BIPAP face mask).
I sewed some velcro onto a ribbon to tie around the head bar of my mask to attach to my head cap. This stopped it hanging down on my nose all night.
Cooking
I started making cakes :-) (well giving my PA directions anyway).
January 2013
Family
A year on and we finaly get the inquest and a verdict of suicide so that's something positive. We have been planning and booking holidays and are going to aim for a week on the Isle of Wight (I've not been there before) and my husband needs a ship and bridge fix (so we will be going to Bristol and Bath). This year I'd also like to go to Trentham and Chester Zoo so watch this space!!
We had our first glimpse of snow
Pets and Wildlife
I had a remote camera pan and tilt for Christmas and I am now in control of my web cam view that usually points at the fish tank or out of the window. I've enjoyed watching shrimps on my computer without having to turn my head all the time.
I tend not to go out in the cold months and I'm currently hibernating. I am rather enjoying going on safari to Africa thanks to the BBC and a HD tv :-). Here are some of my pictures lol.
Piggies are all happy and well and look who showed up (I'm still going to call him Borris even though it might not be him!)
Borris video.
Health
Well, I started this year looking a lot better than last January! Since using a head cap and velcro ribbon I've had no sores on my nose and only the odd ones on my cheeks and forehead. This is a step in the right direction.
I sleep about 12-13 hours a day and pop my vent on at night if I'm feeling puffy. This is a big change from last year when I could only stay in bed about 7 hours due to my husband having to get me up before work.
Now I have a PA who comes in the mornings to stay with me and I can get the sleep my body needs. It means I have a lot more energy and I'm alert for the time I am up (rather than just living like a sleepy zombie).
I'm still trying to get hold of an Arctic profiling bed that I have been trying to get since July 2010 to reduce the pain, cramps and pressure sores from not being able to move in bed. Looks like I will putting in a formal complaint.
Our Biobidet decided to break down which is a real problem when you can't wipe yourself :-/
On the up side - I got to try out my wheelchair from the NHS to do a fitting session. It's gone back to the workshop for more work and the next step will be to go to them and try out cushions. My next kit-chair is also doing good and we only have a few more bits to do until I can sit in it in the evening. At the moment though the bidet is the priority - more things for hubs to fix :-/ .
Cooking
I'm loving cooking and baking - and for Christmas I was giddy over getting my crockpot. In fact, I was so excited I couldn't sleep the night before I first used it!
It's the one thing I can do for my husband - prepare a meal!
I have to direct PA's but it's great fun. So far this month I've made a BBQ beef casserole, chicken paprika, peanut chicken, Louisianna Beef Chilli and Mexican Bean and Sausage casserole. I've also baked scones and cake 'things'.
Private v. NHS - wheelchair part 6
22/September/2012 03:37 PM Filed in: Independent living | Health
Private verses NHS - my experience of wheelchair services.
Last week I went for a private assessment to find a wheelchair cushion. I have been feeling a lot of pain from pressure on my pelvis and in the middle of May (approx) I contacted my local wheelchair service clinic so they could supply me with a better cushion.
Time from initial booking of an assessment to providing a solution:
NHS: 4 months and ongoing. Refuse to supply a cushion until they have bought me a new wheelchair.
PRIVATE: 4.5 weeks (of which we were away for one week which postponed the assessment) until a cushion was purchased.
Who did the assessment?
NHS: Physiotherapist (older person) and an engineer or product supplier working in wheelchair services.
PRIVATE: Me with the help of my husband and the knowledge of an Occupational Therapist (younger person so more up to date training and values?) and the person we had met who demonstrated wheelchairs. Very much a joint approach led by us.
Where was the assessment?
NHS: New, small building, stale, clinical, small consultation room (no room to swing a cat) , test track built at the back to try chairs. The buidling had a large accessible toilet and manual hoist. Welcome felt cold and clinical and at times like the Spanish Inquisition.
PRIVATE: A mobility supplier who had offices on a farm style property. Assessment room with plenty of space, mobile hoist. Lots of wheelchairs on site. Accessible toilet with ceiling hoist and engineer workshops on site. My only gripe was that it was very cold. We were met at the door and everyone was very friendly and we were offered tea and coffee etc. Also offered the room after if we wanted to eat lunch before leaving.
The private assessment was about 15 minutes drive further than the NHS clinic.
Approach:
NHS: Medically focused on text book posture and clinical need and what they thought was best for my body. Very little evidence they understood the needs of people with MD and how it affected me. Based on a patient rather than customer approach. Did little to understand the problem and offered no solution.
PRIVATE: Person focused looking at functional use. Very much about what I felt might work, the position my body was comfortable in and would allow me to do the things I wanted to do in the day.
Did they sound like they understood the problem?
NHS: No - in fact they made problems which were in their eyes only! I felt they didn't know what MD was.
PRIVATE: Lots of time spent listening to what we were looking for and why I felt my cushion was not working. Really felt they understood how my pelvis worked even without electronic pressure mapping. Said things which made me feel she understood what MD was and how it impacted on seating.
Did they have a range of options to try?
NHS: No - said there was no cushion solution from their catalogue for my current wheelchair (and didn't try anything until 3.5 months later which was clearly not going to work and would not be released to use in my existing chair).
PRIVATE: Yes, they had a few things which they demonstrated and discussed the options available for each type of cushion. They asked which I wanted to try (and I felt I could have stayed as long as I needed to try all of them). Found a cushion to try that fitted in my current chair and placed an order. We also tried out a back rest we were interested in and later bought.
Was there a charge for the assessment service?
NHS: No - but there was a cost to us for repeated visits where my husband had to take time of work to go with me and lost quite a few days of holiday.
PRIVATE: No - but consultation time possibly reflected in product prices.
Was there a charge for the solution?
NHS: No - apart from we found out we could top up and get a better model chair. They pay for the parts that meet my clinical needs. Not allowed to alter any part of the chair or cushion if we ever get one.
PRIVATE: Yes - private purchase of chosen products - but we are free to chop them, change them and alter the cushion as we need to. They could chop bits of and tailor them on site if needed.
Advantages ?
NHS: If the provided cushion is not working as well as hoped I can go back for a different one or another assessment. Cushion is free.
PRIVATE: Bigger selection of cushions outside of NHS suppliers, advice free from budget restrictions (NHS might not tell you about or try certain cushions as they are deemed too expensive to provide even if they might be better for you). Ability to cut and alter any product as we own it. Given advice and tips on dealing with the NHS!! Have no problem working with NHS as the private part of the arrangement. Quicker solutions - shorter waiting time, choice of places to pick up my order.
Last week I went for a private assessment to find a wheelchair cushion. I have been feeling a lot of pain from pressure on my pelvis and in the middle of May (approx) I contacted my local wheelchair service clinic so they could supply me with a better cushion.
Time from initial booking of an assessment to providing a solution:
NHS: 4 months and ongoing. Refuse to supply a cushion until they have bought me a new wheelchair.
PRIVATE: 4.5 weeks (of which we were away for one week which postponed the assessment) until a cushion was purchased.
Who did the assessment?
NHS: Physiotherapist (older person) and an engineer or product supplier working in wheelchair services.
PRIVATE: Me with the help of my husband and the knowledge of an Occupational Therapist (younger person so more up to date training and values?) and the person we had met who demonstrated wheelchairs. Very much a joint approach led by us.
Where was the assessment?
NHS: New, small building, stale, clinical, small consultation room (no room to swing a cat) , test track built at the back to try chairs. The buidling had a large accessible toilet and manual hoist. Welcome felt cold and clinical and at times like the Spanish Inquisition.
PRIVATE: A mobility supplier who had offices on a farm style property. Assessment room with plenty of space, mobile hoist. Lots of wheelchairs on site. Accessible toilet with ceiling hoist and engineer workshops on site. My only gripe was that it was very cold. We were met at the door and everyone was very friendly and we were offered tea and coffee etc. Also offered the room after if we wanted to eat lunch before leaving.
The private assessment was about 15 minutes drive further than the NHS clinic.
Approach:
NHS: Medically focused on text book posture and clinical need and what they thought was best for my body. Very little evidence they understood the needs of people with MD and how it affected me. Based on a patient rather than customer approach. Did little to understand the problem and offered no solution.
PRIVATE: Person focused looking at functional use. Very much about what I felt might work, the position my body was comfortable in and would allow me to do the things I wanted to do in the day.
Did they sound like they understood the problem?
NHS: No - in fact they made problems which were in their eyes only! I felt they didn't know what MD was.
PRIVATE: Lots of time spent listening to what we were looking for and why I felt my cushion was not working. Really felt they understood how my pelvis worked even without electronic pressure mapping. Said things which made me feel she understood what MD was and how it impacted on seating.
Did they have a range of options to try?
NHS: No - said there was no cushion solution from their catalogue for my current wheelchair (and didn't try anything until 3.5 months later which was clearly not going to work and would not be released to use in my existing chair).
PRIVATE: Yes, they had a few things which they demonstrated and discussed the options available for each type of cushion. They asked which I wanted to try (and I felt I could have stayed as long as I needed to try all of them). Found a cushion to try that fitted in my current chair and placed an order. We also tried out a back rest we were interested in and later bought.
Was there a charge for the assessment service?
NHS: No - but there was a cost to us for repeated visits where my husband had to take time of work to go with me and lost quite a few days of holiday.
PRIVATE: No - but consultation time possibly reflected in product prices.
Was there a charge for the solution?
NHS: No - apart from we found out we could top up and get a better model chair. They pay for the parts that meet my clinical needs. Not allowed to alter any part of the chair or cushion if we ever get one.
PRIVATE: Yes - private purchase of chosen products - but we are free to chop them, change them and alter the cushion as we need to. They could chop bits of and tailor them on site if needed.
Advantages ?
NHS: If the provided cushion is not working as well as hoped I can go back for a different one or another assessment. Cushion is free.
PRIVATE: Bigger selection of cushions outside of NHS suppliers, advice free from budget restrictions (NHS might not tell you about or try certain cushions as they are deemed too expensive to provide even if they might be better for you). Ability to cut and alter any product as we own it. Given advice and tips on dealing with the NHS!! Have no problem working with NHS as the private part of the arrangement. Quicker solutions - shorter waiting time, choice of places to pick up my order.
Big fat lies - wheelchair part 5
It turns out we were told big fat porky pies.
About a week ago we went to the wheelchair clinic. I told them the IBIS was pointless because it won't safely go in the car and doesn't have enough tilt in space. I wanted the meeting to be about showing them I can get into a Tango like we tried from the private place. [IMAGE BELOW: My pressure map results (my bum!!).]
Anyway, it turns out that they had no Tango and wanted me to try a Salsa. I wasn't keen really but we did manage to transfer and went over the mods that were possible.
It was at this point that the engineer (who seemed really on the ball) said we could have a voucher and top up as it can come with a riser (a part that raises your height and is bells and whistles stuff). I looked at hubs in disbelief and he did the same… whooooaaah hang on a minute. What did you just say? We were told the clinic didn't operate vouchers towards chairs in the private sector. He calmly said yes they did and he had arranged this before and ordered chairs that people had customised and paid for extras to be added.
So, the wheelchair physio assessors had lied to us - they just didn't want me to have a voucher. Why….. who knows? Too much efforts to organise? They just said they had discussed it with managers and felt it wasn't right in my case. Totally out of order. I have as much right to personalise my chair as anyone else. I am still angry and shocked at their attitude.
She even asked my why would I want a riser anyway. If you only saw the world from about 4 foot off the ground and had the chance to raise up to the height of a seated or standing adult - why wouldn't you go for that option?
Being high up is great … I had a whole list of reasons. I want to be able to see into pans on the cooker without having someone lift them down to show me what's in them. I want to go to zoos and museums and actually see things over barriers and in cases. I want to peek into cupboards myself without asking people to describe what they see. I will also (excitement levels rising at the thought) be able to take photographs on my phone and get less pavement and more 'scenery' !! Plus, the world is more 3D at a higher level (you can see over and behindn things). I also might not get lost in a clothes shop amongst the hangers - I can peek up and see where I am!
The lady clearly has no understanding of independence and quality of life…. which she was going to deny me.
The order has gone in for my new chair. I hope that I really do get the riser and that my body gets on well with the height and set up that is planned. Only timem will tell.
About a week ago we went to the wheelchair clinic. I told them the IBIS was pointless because it won't safely go in the car and doesn't have enough tilt in space. I wanted the meeting to be about showing them I can get into a Tango like we tried from the private place. [IMAGE BELOW: My pressure map results (my bum!!).]
It was at this point that the engineer (who seemed really on the ball) said we could have a voucher and top up as it can come with a riser (a part that raises your height and is bells and whistles stuff). I looked at hubs in disbelief and he did the same… whooooaaah hang on a minute. What did you just say? We were told the clinic didn't operate vouchers towards chairs in the private sector. He calmly said yes they did and he had arranged this before and ordered chairs that people had customised and paid for extras to be added.
So, the wheelchair physio assessors had lied to us - they just didn't want me to have a voucher. Why….. who knows? Too much efforts to organise? They just said they had discussed it with managers and felt it wasn't right in my case. Totally out of order. I have as much right to personalise my chair as anyone else. I am still angry and shocked at their attitude.
She even asked my why would I want a riser anyway. If you only saw the world from about 4 foot off the ground and had the chance to raise up to the height of a seated or standing adult - why wouldn't you go for that option?
Being high up is great … I had a whole list of reasons. I want to be able to see into pans on the cooker without having someone lift them down to show me what's in them. I want to go to zoos and museums and actually see things over barriers and in cases. I want to peek into cupboards myself without asking people to describe what they see. I will also (excitement levels rising at the thought) be able to take photographs on my phone and get less pavement and more 'scenery' !! Plus, the world is more 3D at a higher level (you can see over and behindn things). I also might not get lost in a clothes shop amongst the hangers - I can peek up and see where I am!
The lady clearly has no understanding of independence and quality of life…. which she was going to deny me.
The order has gone in for my new chair. I hope that I really do get the riser and that my body gets on well with the height and set up that is planned. Only timem will tell.