I had an old friend come and stay with me recently. We were very close before I moved away for uni but haven't caught up or spent that much time together for almost 6 years!
Having someone from that era of my life here really brought home how much my life has changed in the last few years. I pushed myself far too hard that week and yet didn't come close to doing as much as I would have done were it not for being chronically ill. For example, I couldn't choose to cook us both dinner - I had to ask P to do it and there were several days where I had to leave P to go and explore whilst I stayed home in bed. This was frustrating because some of the things they wanted to do, I would have enjoyed as well!
I'm not really sure how to describe it but it really brought it home how much things have changed. I know that there is much more I could be doing to manage my energy but I honestly just kept forgetting because this wasn't something I had to factor in to my life 5 years ago!
My attempts at recovering from the visit were disturbed by a sudden, urgent need to change my carer - something I was hopeful I would be able to put off since I will soon be employing PAs privately. Whilst here, P commented about how cold my carer is but they also witnessed 2 incidents which just spelled out how ridiculous she is as an employee. The first was her making a 45 minute long personal phone call on the balcony whilst the hoover was running on my sofa (to sound as if she was working). This is obviously seriously taking the mick. There was also another incident which was pretty disgusting, out of line and well....unbelievable. So much so that I'm going to save posting about it here. I am ok, safe etc. It was not abusive towards me.
After this drama we phoned the out of hours department and had her visit for the evening cancelled. Unfortunately this resulted in issues with care for several days. Thankfully 2 other friends came to hang out, help out if necessary and generally keep my mental health somewhat stable. They've now gone and I'm hoping I'll be in the headspace to balance rest and working through my endless to do lists over the next week or so.
The carers I have at the moment are ok-ish. Unfortunately they also take up far too much energy by not understanding most of what I'm saying and/or asking for constant clarification. Speech and communicating are difficult when I am particularly unwell so this is not particularly useful!
I had intended for this post to be about several other potentially more interesting things too but am finally becoming sleepy so will attempt to write more another time.
Sunday 11 November 2012
Sunday 21 October 2012
Dear carer....
Dear carer,
you've been working with me for 10 months now. This is long enough to know little things like to change gloves between helping me go to the toilet and getting me a drink. You should have known how to turn people before you even started working with me. After over a hundred showers, you should know little things like to move things back so that I don't have to struggle to reorganise the bathroom everytime I need the toilet.
p.s please wash, paying particular attention to your feet (or at least leave your shoes on) and stop taking personal calls whilst here.
pp.s I know your fiance sits outside my flat waiting for you some evenings. This is not ok.
Another complaint time?
On a more positive note, my care budget has been agreed for certain. I will be making some calls tomorrow but I already have some interviews set up. Hurrah!
you've been working with me for 10 months now. This is long enough to know little things like to change gloves between helping me go to the toilet and getting me a drink. You should have known how to turn people before you even started working with me. After over a hundred showers, you should know little things like to move things back so that I don't have to struggle to reorganise the bathroom everytime I need the toilet.
p.s please wash, paying particular attention to your feet (or at least leave your shoes on) and stop taking personal calls whilst here.
pp.s I know your fiance sits outside my flat waiting for you some evenings. This is not ok.
Another complaint time?
On a more positive note, my care budget has been agreed for certain. I will be making some calls tomorrow but I already have some interviews set up. Hurrah!
Friday 5 October 2012
Trip to thorpe park
It's really late but I'm full of adrenaline (and sugar, but that's an issue for another time). I can't sleep so I thought I'd write about my recent experience going to thorpe park.
The last time I went to a theme park was several years ago. I was partially mobile and it was the first time I ever used a wheelchair! This definitely helped my relationship with wheelchairs as I could see what could be achieved by using one. This was just over 2 years ago.
This time was going to be different. On the one hand, it's taken almost those 2 years to get my mobility back to a point where I can move my legs reasonably freely. On the other hand, any form of weight bearing/being upright still has massive ramifications on my health. But, I really wanted to go so I duly planned a trip with just one other person so that htere wasn't too much to think about/plan and I could use all my energies as a 'test run' to see how my body responds to rides now.
Planning this got a bit stressful when I realised that I would need to bring letters of proof that I couldn't queue. DLA is not enough apparently. Neither is the fact the queues are not wheelchair accessible so I can't get in them anyway! Another major factor in me only going with one person was that you can now only have one person jump the queues with you. There really needs to be a system for when people go in a group. They also only allow one disabled person on a ride at a time due to health and safety!
As per usual, accessibility was the biggest issue. Some rides can only be accessed by stairs, some need to be climbed in to (rather than transferring) and others are made inaccessible by the complex walking routes required to exit in an emergency with no evacuation chair available. I barely slept the night before as I was trying to work everything out and stressing that I might spoil my friend's fun by not being able to go on anything.
We arrived at the park at about 12pm giving us 5 hours. On arriving we discovered that the following rides were shut:-
- Nemesis Inferno
The last time I went to a theme park was several years ago. I was partially mobile and it was the first time I ever used a wheelchair! This definitely helped my relationship with wheelchairs as I could see what could be achieved by using one. This was just over 2 years ago.
This time was going to be different. On the one hand, it's taken almost those 2 years to get my mobility back to a point where I can move my legs reasonably freely. On the other hand, any form of weight bearing/being upright still has massive ramifications on my health. But, I really wanted to go so I duly planned a trip with just one other person so that htere wasn't too much to think about/plan and I could use all my energies as a 'test run' to see how my body responds to rides now.
Planning this got a bit stressful when I realised that I would need to bring letters of proof that I couldn't queue. DLA is not enough apparently. Neither is the fact the queues are not wheelchair accessible so I can't get in them anyway! Another major factor in me only going with one person was that you can now only have one person jump the queues with you. There really needs to be a system for when people go in a group. They also only allow one disabled person on a ride at a time due to health and safety!
As per usual, accessibility was the biggest issue. Some rides can only be accessed by stairs, some need to be climbed in to (rather than transferring) and others are made inaccessible by the complex walking routes required to exit in an emergency with no evacuation chair available. I barely slept the night before as I was trying to work everything out and stressing that I might spoil my friend's fun by not being able to go on anything.
We arrived at the park at about 12pm giving us 5 hours. On arriving we discovered that the following rides were shut:-
- Nemesis Inferno
- Collosus
- Samurai
None of these closures had been listed on the website in advance. This only left 2 big rides I could go on in terms of their safety procedures: no way out and stealth. I was pretty gutted.
On the day I decided that it was worth exhausting myself getting in and out of log flumes and the like and in many ways I wanted to make the most of the recent increase in mobility. So, we went on
- storm surge
- Like a helter skelter water slide with inflatable dingies. I had to walk about 1.5 metres to get in to the boat and then throw myself in (thank you gravity!). To get out my friend helped with my legs.
- loggers leap
- This exhausted me. They tried to slow the boats down but this just meant I was upright longer so dysautonomic stuff set in and made me feel rough as hell. It was still fun though and we went on it again later (twice in a row without getting out :p)
- No way out
- you can do a standing transfer in to the ride but my friend had to drive my chair back out and towards the ride exit because the ride starts and ends in different places. This was a bit embarrassing as they had to hold the ride both at hte start and end. The ride itself was good but in terms of my impairments very very challenging. The ride is a standard carriage with just a bar over your lap. My sitting balance is pretty poor so I felt as if I was falling out of the seat. In the end I had to sit with my arms crossed over my lap with one arm holding the grab rail and hte other holding on to my friend's arm. I probably looked like I was terrified but in reality I was stopping my arm from spasming out of the ride carriage!
With the exception of stealth, the other main rides require you to be able to walk at least 25 metres if the ride breaks down. I can't walk anywhere near 25 metres! But...being the adrenaline junkie I am and because my favourite ride was broken (collosus) I decided to risk it. If it broke down then I'd walk, crawl, bum scoot and beg for piggie backs to get off....but realistically I was hoping to god they didn't break down. So we went on:
- The swarm
- This ride was absolutely incredible. I went on it twice in the end. amazingly no one asked if I could get off in an emergency. The seats were incredibly supportive and perfect for me as they were angled so offered enough support. I could also loop my arms in to the chest strap meaning they were safe from spasm. The only access issue getting on was that I needed someone else to do the buckle as well as my friend needing to push me up in to the chair (it was a bit high). I was in hysterics for a large amount of the ride because every time the carriage inverted my legs would spasm out at 90 degrees so all I could see was these legs shaking up in the sky! Was amusing watching it on the video footage they had afterwards.
After this we decided to go on nemesis as it had re opened...but got there and noticed there's a massive stair case to get up to the ride....so no can do.
We decided instead to go back towards stealth.....but it had been closed.
We decided instead to go back towards stealth.....but it had been closed.
So we decided to go on saw (another 25m+ evacuation route)...but that had been closed too!...this is how we ended up going on swarm twice.
I'm yet to know for certain what the repercussions of such an exhausting day out will be but all in all it was a very enjoyable day. However, I was very disappointed that so many rides were closed when we arrived with no notice + that others were closed through out the day. I'm also pretty annoyed that rides completed as recent as spring 2012 could have such inaccessible evacuation policies meaning that although the ride itself is accessible, health and safety policy gets in the way.
I'm yet to know for certain what the repercussions of such an exhausting day out will be but all in all it was a very enjoyable day. However, I was very disappointed that so many rides were closed when we arrived with no notice + that others were closed through out the day. I'm also pretty annoyed that rides completed as recent as spring 2012 could have such inaccessible evacuation policies meaning that although the ride itself is accessible, health and safety policy gets in the way.
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?
Tuesday 17 July 2012
Kitten!
Lots has been going on but by far the most interesting thing is that I now have a kitten!
As someone whose illness stops them socialising as much as they'd like I have to admit, I do get a bit lonely and boy does having another living creature here help!
She's 7 months old and an absolutely beautiful silver tabby. I fell in love with her the moment I saw her in the shelter. She'd been suggested specifically for me and they definitely got it right. She was placed on my lap and after 2 seconds of 'what on earth is happening' wriggling, she was suddenly rolling around my lap loving hte attention. A member of staff walked past and said "I think you've been chosen".
There was a bit of scariness a few days after I got her when suddenly the occasional sneeze turned to horrible wet sneezes, gooey eyes and complete exhaustion. A trip to the vets and cat flu was confirmed. It had been going around the rescue centre. She had been in quarantine so they thought she'd avoided it but sadly not!
After about 6 days of antibiotics suddenly she started running circles around me (literally). She's suddenly recovered and become this hyperactive, playful thing. She wants to jump on everything and likes to think my hand is prey. We definitely need to work on that one. I'm quite scratched up and it's getting sore. A week ago she was afraid of her toys and wanted nothing more than to just curl up next to me. She's still cuddly but I have to be on watch for her teeth!
The most amusing moment so far was definitely when she woke me up at 4.30am the other night by jumping very loudly on to my shoulder. I opened my eyes to discover a very proud looking cat with a 'gift' as a wet kitchen sponge. Brilliant.
As someone whose illness stops them socialising as much as they'd like I have to admit, I do get a bit lonely and boy does having another living creature here help!
She's 7 months old and an absolutely beautiful silver tabby. I fell in love with her the moment I saw her in the shelter. She'd been suggested specifically for me and they definitely got it right. She was placed on my lap and after 2 seconds of 'what on earth is happening' wriggling, she was suddenly rolling around my lap loving hte attention. A member of staff walked past and said "I think you've been chosen".
There was a bit of scariness a few days after I got her when suddenly the occasional sneeze turned to horrible wet sneezes, gooey eyes and complete exhaustion. A trip to the vets and cat flu was confirmed. It had been going around the rescue centre. She had been in quarantine so they thought she'd avoided it but sadly not!
After about 6 days of antibiotics suddenly she started running circles around me (literally). She's suddenly recovered and become this hyperactive, playful thing. She wants to jump on everything and likes to think my hand is prey. We definitely need to work on that one. I'm quite scratched up and it's getting sore. A week ago she was afraid of her toys and wanted nothing more than to just curl up next to me. She's still cuddly but I have to be on watch for her teeth!
The most amusing moment so far was definitely when she woke me up at 4.30am the other night by jumping very loudly on to my shoulder. I opened my eyes to discover a very proud looking cat with a 'gift' as a wet kitchen sponge. Brilliant.
Sunday 8 July 2012
moving forward with music again
Yesterday I attended the symposium I spoke about in my last blog. It was really interesting and I left feeling pretty inspired about the future with new ideas and some contacts too.
What surprised me was that whilst I expected to leave with most ideas about working within this field, I actually found myself relating everything back to my own musicianship and how I can bring that forward.
Thanks to the many shitty experiences I've had with accessing any level of support I have a bit of a distorted relationship with assisted technology. I'm always questioning whether I should be using things, wondering if impairments will improve only if I resist the equipment long enough and just generally second guessing the validity of my own needs.
In terms of music stuff I'm starting to feel much more as if actually I should just look at the end goal and do all I can to reach it. It's odd how we internalise this sort of crap really.
I realised yesterday that in order to make it fully accessible for me to make my own music and perform and create it live in the way that I want to I'm going to need much more than my loop pedal and current instruments. I'll need software and macbook to run it, a means of accessing it and that's before considering as well as suitable seating/wheelchair and PA support to access venues. I also need to have a serious think about my own health and the amount that I can actually reasonably do. I need to learn to manage my own health better. The exacerbation of my illness just after yesterday goes to show how important this is.
I had a good chat with people from Drake music and am hoping to gain some support and insight from them about the way forward as well as hopefully using some of their macs!
One of the pieces of kit that I had previously discovered but thought of more as something to work with others using but not so much use myself was the 'skoog'. This is an instrument designed to be as accessible as possible to as many people as possible. It looks like a cube with 5 buttons but actually by means of physical modelling (don't ask me waht that means) allows you to do far more than access 5 notes. It's also very fast to programme new samples, notes or chords so would be ideal for use whilst playing live. I'll be honest in that I did find it difficult to coordinate at first but it really does seem to be the most accessible thing oiut there and I'm sure it will get easier. It would be far more accessible to me than a keyboard or moving fast between multiple instruments on stage. Sadly, as with most things it is quite expensive for an individual to buy.
The beauty of all of this software and kit is that I could then use it for work with community music projects and that whilst learning to use it myself I would not only be developing my own musicianship but developing my skills in this particular field.
So, now I need to think of ways of moving this forward and start making music again in the meantime.
www.skoogmusic.com
www.drakemusic.org
What surprised me was that whilst I expected to leave with most ideas about working within this field, I actually found myself relating everything back to my own musicianship and how I can bring that forward.
Thanks to the many shitty experiences I've had with accessing any level of support I have a bit of a distorted relationship with assisted technology. I'm always questioning whether I should be using things, wondering if impairments will improve only if I resist the equipment long enough and just generally second guessing the validity of my own needs.
In terms of music stuff I'm starting to feel much more as if actually I should just look at the end goal and do all I can to reach it. It's odd how we internalise this sort of crap really.
I realised yesterday that in order to make it fully accessible for me to make my own music and perform and create it live in the way that I want to I'm going to need much more than my loop pedal and current instruments. I'll need software and macbook to run it, a means of accessing it and that's before considering as well as suitable seating/wheelchair and PA support to access venues. I also need to have a serious think about my own health and the amount that I can actually reasonably do. I need to learn to manage my own health better. The exacerbation of my illness just after yesterday goes to show how important this is.
I had a good chat with people from Drake music and am hoping to gain some support and insight from them about the way forward as well as hopefully using some of their macs!
One of the pieces of kit that I had previously discovered but thought of more as something to work with others using but not so much use myself was the 'skoog'. This is an instrument designed to be as accessible as possible to as many people as possible. It looks like a cube with 5 buttons but actually by means of physical modelling (don't ask me waht that means) allows you to do far more than access 5 notes. It's also very fast to programme new samples, notes or chords so would be ideal for use whilst playing live. I'll be honest in that I did find it difficult to coordinate at first but it really does seem to be the most accessible thing oiut there and I'm sure it will get easier. It would be far more accessible to me than a keyboard or moving fast between multiple instruments on stage. Sadly, as with most things it is quite expensive for an individual to buy.
The beauty of all of this software and kit is that I could then use it for work with community music projects and that whilst learning to use it myself I would not only be developing my own musicianship but developing my skills in this particular field.
So, now I need to think of ways of moving this forward and start making music again in the meantime.
www.skoogmusic.com
www.drakemusic.org
Wednesday 4 July 2012
Ideas for the future - access in music.
At about 17 I've wanted to become a music therapist. I specifically chose my undergraduate music course based on this aspiration as it had links with Nordoff Robbins and was one of the few reputable universaties offering a module at undergraduate level. I compromised on other aspects of university life specifically for this course.
Whilst at university I realised that funding for these courses was difficult to obtain and that applicants were seldom accepted before their mid twenties anyway. After some thought I figured that some life experience wouldn't go a miss and thought I'd study for a PGCE and teach for a bit before applying for music therapy courses. I worked in a primary school to gain experience and applied for PGCE (teacher training).
It was whilst working in the primary school that I got particularly unwell. One day I woke up and just couldn't get to work. I didn't know how long it would take to recover from whatever this was so I continued my applications and got a place at the institute of education. I'd started liaising with their disability team and by this point was considering whether a wheelchair would mean I was able to do the course and placements.In the end I had to give the place up and that's where these aspirations have halted.
When you first get 'ill' with a mystery illness there's always that hope that you will miraculously get better. Getting ill was also sudden after all. Over time my understanding has changed and I know think more in terms of 'impairment' and 'disability' than in terms of illness. Things still might improve or they might get worse. They might do a bit of both. I still don't know what the future holds.
Having had all my aspirations paused so abruptly was really painful. Not knowing whether this dream of being a music therapist will ever be possible hurts too. That's why it's been really refreshing and exciting to find something that I'm interested in again, in a similar field.
I've been looking in to various different options for making it more possible for me to perform as a musician again, and particularly for me to do some solo stuff. In my search for switches, mounts etc I found two things that really interested me.
Firstly, there are now much more instruments out there which are accessible to people with all sorts of impairments. The 'magic flute' in particularly cought my eye. I love the fact that this field is moving away from tokenistic inclusion and aiming more for musicianship in its own right. The fact we've moved away from horrible 'midi' sounds means that things have moved forward a long way in terms of gaining mainstream credibility.
Secondly, there are loads of apps for communication and music!
I got a bit excited by this. I've wanted to do an academic masters course for quite some time but never been entirely sure what I want to study. But this is something I think I can really sink my teeth in to!
I felt pretty damn lucky then to find out that there are events in London this weekend about this very topic including a symposium for which I found significantly reduced price tickets!
So, I'll be attending this:
http://edition.pagesuite-professional.co.uk/launch.aspx?referral=other&refresh=y04W3T1aK0g6&PBID=454f4674-2eb2-4bf2-a4be-f15ad6ae100a&skip=
Wish me luck and I'll be back with updates and ideas! I still don't know what part of this field I'd like to work in but hopefully this will give me some ideas!
Monday 25 June 2012
The inaccessible nightmare that is visiting family
I meant to post this earlier but I got side tracked downloading apps on to my android phone. I've been looking in to various different apps that might make it easier to use the computer when I'm not so well as well as apps that make accessing musicianship easier. Definitely more on that at a later date!
Last week I visited my family in my home town for the first time in over 2 years. It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.
Still, there are quite a few things that just made it clear to me just how much my impairments have progressed. When I last visited I was only using 1 crutch. My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later. Now I use a powerchair pretty much full time. I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better. In all honesty, it's a bit sad really.
Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare. I used to travel quite a bit and visit friends houses regularly. It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.
Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare. In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.
Then there's the age old crip problem. Where the hell do I pee? Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs. Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it. I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(
I had to stay in a hotel too which posed it's own problems. No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently. (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P ) This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.
The biggest problems in hotel rooms generally is the bathroom. Who on earth thinks a bath is accessible regardless of how many grab rails it has. I used this as an excuse to have a bath with lush products though. Although for future reference, getting in is easier than getting out! I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.
The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat. If I didn't have support of friends and family there's no way I could have gone. I can't afford to (and shouldn't have to) pay someone out of my own pocket. Thankfully my mother is now more accepting of my impairments and was willing to help out.* Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day. I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.
My plan to improve things for the future is:
- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)
Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)
I really would like to visit people more often. Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.
*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)
Last week I visited my family in my home town for the first time in over 2 years. It was a far more positive experience than I'd originally anticipated over all. It was good to see family and friends even if I did only stay for two nights.
Still, there are quite a few things that just made it clear to me just how much my impairments have progressed. When I last visited I was only using 1 crutch. My mobility was impaired but it was more about fatigue. I managed the day ok, I just paid for it later. Now I use a powerchair pretty much full time. I didn't realise when I first started using a basic electric wheelchair nearly 2 years ago that my impairments would get much worse, not better. In all honesty, it's a bit sad really.
Trying to travel at all as a disabled person who relies on equipment and care is a bit of a nightmare. I used to travel quite a bit and visit friends houses regularly. It occurred to me whilst at my mothers house that in the last 18 months this was only the second time I'd been inside someone else's home. Now don't get me wrong, I do love my flat and enjoy having people over but I also miss just sitting with a cup of tea at someone elses, watching a flim, getting a takeaway and enjoying being in other people's company without being the host.
Looking at how inaccessible most people's places are, there's no wonder I don't just pop over for a cup of tea. Not only does it often take me twice as long to get across London as non powerchair users, getting in to the place when I get there is a nightmare. In order for me to get in to my mum's house, I had to use a make shift ramp (bricks and wood) and drive at an angle more suited to a ski jump than an expensive piece of kit.
Then there's the age old crip problem. Where the hell do I pee? Well, to be honest, on this occasion in to a disposable gel urinal in a cupboard under the stairs. Nothing beats shouting out "mum can you pass me my phone please?" "why?" "It's got a flashlight on it". See, I told you apps were useful :p Not everyone has a suitable cupboard and definitely not everyone would be happy for me to pee in it. I couldn't visit my brothers at all as it's 2 flights of stairs just to get to the front door :(
I had to stay in a hotel too which posed it's own problems. No profiling bed puts me at risk in an emergency as I cannot always move well enough to get out of bed independently. (thankfully when the alarm went off at 5am, I was so startled that I spasmed/jerked upright :P ) This also meant I need to give my mum a key and rely on her hanging around any time I needed to lie down.
The biggest problems in hotel rooms generally is the bathroom. Who on earth thinks a bath is accessible regardless of how many grab rails it has. I used this as an excuse to have a bath with lush products though. Although for future reference, getting in is easier than getting out! I had my mum to help + there was a ledge behind my back which made it vaguely possible to get out.
The last and most frustrating problem was the fact that my care is not portable. In other words I can't access it from anywhere other than my flat. If I didn't have support of friends and family there's no way I could have gone. I can't afford to (and shouldn't have to) pay someone out of my own pocket. Thankfully my mother is now more accepting of my impairments and was willing to help out.* Still, she shouldn't have had to take 3 days off work for the duration of my stay and come in to the town centre 2-3 times a day. I know I'm not a burden but I feel like one and it's just not fair when the support should be in place.
My plan to improve things for the future is:
- continue to fight for direct payments so that my care is portable
- continue to fight for higher DLA so that I can afford the additional costs associated with 2 travelling.
- Learn how to drive and get a wheelchair accessible vehicle
-taxicard (applied but where is it!?!)
Once those are sorted perhaps then I will have someone to help with these:
- portable ramp
- supportive manual wheelchair
- bath board/over bath shower chair
- suction grab rails (have but couldn't carry)
I really would like to visit people more often. Being in someone's home is so much less draining than loud restaurants and pubs not to mention cheaper.
*big thanks to travelodge and their massive towels for helping me preserve my modesty ;)
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.
Saturday 19 May 2012
A noobs guide to potential equipment/adaptations part 2: food/cooking
Food!
Food is one of those annoying things that you can't do without but can take a huge amount of physical and mental resources to prepare. Chopping veg, opening packages, lifting pans can all be difficult or impossible if you have a physical impairment and mental health issues or fatigue can make the task of cooking a well balanced meal seem insurmountable.
Unfortunately, most of us don't get the help we need. Even those of us lucky (?) enough to qualify for care provision may find ourselves with such a small time frame for food preparation that our food choices become extremely limited. Here are a few things that I've found invaluable in my quest to eat as healthily as time and physical limitations will allow.
Firstly, meet my three friends.
Say hello to 1) George foreman
"Hello" (what? It looks like a mouth!)
2) The slow cooker
and 3) Microwave
And on to....
6) Quorn fillets
I'm a vegetarian but as these are low in fat, high in protein only around £2 a bag, I think they have their benefits for meat eaters too! Put them in the George Foreman grill with a little lemon juice and ginger or add pasta sauce afterwards. I sometimes just eat these first 3 items together as a meal when time is short. Well worth checking out the rest of the range too.
7) Beans, grains and pulses
10 food products this crip loves
Most of these products should be available in any bigger supermarket. Shop online!
Reach for store's plain, own brand. Comes in steam bags that you just put in the microwave. Watch out for the flavoured frozen and cupboard (e.g uncle bens) rice mixes as they are more likely to contain additives.
This comes in little pellets which you microwave. It sounds a bit gross but it's really alright. Great for satisfying a craving but not particularly healthy!
Great for adding a portion of veg to a meal. Shove straight in microwave. Also available in store's own brand.
4) Frozen preprepared vegetables
Again, these are available fresh but they tend to not be so good value. Most shops seem to have them but sainsburys and Ocado seem to be best. You can get individual veggies e.g butternut squash, spinach, broccoli, onion; but also casserole mixes, mushroom medleys, Mediterranean grilled veg and my favourite - the frozen stir fry mix You can also get frozen garlic and herbs.
4) Frozen preprepared vegetables
Again, these are available fresh but they tend to not be so good value. Most shops seem to have them but sainsburys and Ocado seem to be best. You can get individual veggies e.g butternut squash, spinach, broccoli, onion; but also casserole mixes, mushroom medleys, Mediterranean grilled veg and my favourite - the frozen stir fry mix You can also get frozen garlic and herbs.
5) Aunt bessie's frozen Finely chopped veg
Gets a special mention because it's so versatile. Add it in to curries, bolognese or just an omelette. Veggies with little work. Particularly useful if you don't actually like vegetables that much.
6) Quorn fillets
I'm a vegetarian but as these are low in fat, high in protein only around £2 a bag, I think they have their benefits for meat eaters too! Put them in the George Foreman grill with a little lemon juice and ginger or add pasta sauce afterwards. I sometimes just eat these first 3 items together as a meal when time is short. Well worth checking out the rest of the range too.
7) Beans, grains and pulses
Pour a tin or two of these, some frozen veg and sauce in to a slow cooker and you're away! Some are cheaper to buy in bags but be sure that you get ones that don't need soaking first
Personally I always have the following:
Tinned:
Tinned:
Butter beans
Kidney Beans
Cannellini beans
Borlotti beans
Borlotti beans
Chick peas
Bagged:
Green (puy) lentils
Orange (dahl) lentils
Pinto beans
Bulgar Wheat
Quinoa
Pearl Barley
8) Chilli beans (KTC are the cheapest but best brand in my opinion)
These get a special mention as they add so much flavour to casseroles. Try using them as a base for slow cooked chilli or make a basic sausage and bean casserole with:
1 tin chopped tomatoes
These get a special mention as they add so much flavour to casseroles. Try using them as a base for slow cooked chilli or make a basic sausage and bean casserole with:
1 tin chopped tomatoes
1 tin chilli beans
handful of green lentils
handful of pearl barley
handful finely chopped veg
1 pack linda mcartney veggie sausages
Cook on low for around 6 hours and eat by itself or with rice.
9) Tinned tomatoes
Most people use these but did you know that you can get pre seasoned tins? Great for getting a quick meal that actually tastes of something.
Most people use these but did you know that you can get pre seasoned tins? Great for getting a quick meal that actually tastes of something.
Comes in a sachet which you then use to measure the milk out with. Lots of flavours available. Also works with soya/almond/rice milk etc
That's it for now folks but I hope this is of use to someone! Am hoping the links do work too! I'll probably post some of my own recipes at some point too.
Sunday 29 April 2012
Rambly post about DLA renewal forms
As a disabled person, I spend a large amount of my time filling in forms, writing complaints, chasing up medical and social care professionals. It feels like what little time I have left is overshadowed by the constant knowledge that the to-do list is getting longer and longer.
At the moment I'm filling in DLA renewal forms. They didn't send them to me so I had to call to ask for them...and they still didn't send them. Thankfully the form is the same as for initial claims so I managed to download it and am filling it out on my computer.
DLA forms require a lot of mental/cognitive energy - something I really don't feel like I have at the moment. It also takes a hell of a lot of emotional energy. The forms can be quite distressing. In order to fill them in properly you need to spell out what care you get and what would happen if you didn't get it...something I don't particularly want to think about, especially as social services are messing me around so much they could take it away at any time. The form also requires me to put down all of the care needs I have that are not covered by social services care provision. This is definitely not somethign I want to think about. I prefer to pretend dealing with the things I do is normal and it's upsetting having to think about how different my life is now + how often I have to deal with slightly gross stuff.
The forms are also stressful because although I know what I'm entitled to, no matter how well I fill the forms in, I can't guarantee I will get anything near what I'm entitled to. Last time I was awarded a lower rate than I deserve (thus missing out on various financial premiums) because the fact I'd lifted my arms up once in a medical assessment for a completely different benefit apparently means I have no functional upper limb disability and can complete all self care independently...It could be worse too. They could take all the money away, and trust me, being disabled is expensive business.
I'm also concerned about a gap in my benefits...can I live without the money whilst the renewal is being processed?
On the plus side, receiving DLA (even at a lower rate) has allowed me to pay off some of my debt meaning that when I doget DLA I'll now be able to use it for disability stuff without guilt. Also, if I win my appeal in the autumn then the backpay will be pretty massive.....like my own little DWP savings account ;)
How do others deal with the emotional side of filling in these forms?
At the moment I'm filling in DLA renewal forms. They didn't send them to me so I had to call to ask for them...and they still didn't send them. Thankfully the form is the same as for initial claims so I managed to download it and am filling it out on my computer.
DLA forms require a lot of mental/cognitive energy - something I really don't feel like I have at the moment. It also takes a hell of a lot of emotional energy. The forms can be quite distressing. In order to fill them in properly you need to spell out what care you get and what would happen if you didn't get it...something I don't particularly want to think about, especially as social services are messing me around so much they could take it away at any time. The form also requires me to put down all of the care needs I have that are not covered by social services care provision. This is definitely not somethign I want to think about. I prefer to pretend dealing with the things I do is normal and it's upsetting having to think about how different my life is now + how often I have to deal with slightly gross stuff.
The forms are also stressful because although I know what I'm entitled to, no matter how well I fill the forms in, I can't guarantee I will get anything near what I'm entitled to. Last time I was awarded a lower rate than I deserve (thus missing out on various financial premiums) because the fact I'd lifted my arms up once in a medical assessment for a completely different benefit apparently means I have no functional upper limb disability and can complete all self care independently...It could be worse too. They could take all the money away, and trust me, being disabled is expensive business.
I'm also concerned about a gap in my benefits...can I live without the money whilst the renewal is being processed?
On the plus side, receiving DLA (even at a lower rate) has allowed me to pay off some of my debt meaning that when I doget DLA I'll now be able to use it for disability stuff without guilt. Also, if I win my appeal in the autumn then the backpay will be pretty massive.....like my own little DWP savings account ;)
How do others deal with the emotional side of filling in these forms?
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.
Sunday 22 April 2012
A noobs guide to potential equipment/adaptations - part 1
I was talking to someone the other day about how there's a prevailing attitude within parts of the chronic illness community of cure over adaptation. This seems to be quite prevalent in those illnesses for which campaigning centres around 'cure' and/or those where 'recovery' is the socially expected outcome. Don't get me wrong, I'd really like to get better but I'm trying to be realistic here.
I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down. Either way, guilt does not help me with anything.
So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life. I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.
I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have. Many of the items I own would not usually be prescribed for someone with my impairments. However, that's not to say that they are not needed. I wish it was much easier for others to gain the things they need. However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.
I've spent a long while feeling guilty about adapting my life rather than aiming to 'get better'. In reality my illness was very much progressive up to a point and now I can't tell if the progression has stopped, or just slowed down. Either way, guilt does not help me with anything.
So...I thought instead of talking about how bad I feel and *insert internalised ablism here* etc etc, I thought I'd talk about some of the awesome adaptations I've made which have changed my life. I think this blog would be way too long if I included everything so I'll attempt to make this in to a mini series of some sort.
I'd like to point out that I am both very lucky and very crafty in terms of the equipment and adaptations that I have. Many of the items I own would not usually be prescribed for someone with my impairments. However, that's not to say that they are not needed. I wish it was much easier for others to gain the things they need. However, as I said, I've also been quite crafty in terms of getting equipment so hopefully some of you may get some ideas on obtaining things.
Adjustable bed
Note: stock photo: I don't have granny carpet
This was one of those items that I initially felt very uncomfortable about having but that made such a massive difference to my life that I felt silly for ever doubting it once I started using it! (This happens a lot!)
What is it: An electronically adjustable double bed with massage function. I use my own ikea memory foam mattress on top instead of that supplied.
How it helps:
What is it: An electronically adjustable double bed with massage function. I use my own ikea memory foam mattress on top instead of that supplied.
How it helps:
- Sitting up from a lying down position is either impossible or very very difficult for me so this helps me sit up and means I can get out of bed with minimal to no assistance unless very ill.
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position. Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.
Why I like it
- One of my impairments is what I like to call the 'upside down woodlouse'. In layman's terms: once I'm on my back it's often very difficult to change position. Being able to adjust the legs and back means I don't get uncomfortable lying in the same position.
Why I like it
- I like the fact it's a double. I can take advantage of being a single adult and take up way too much space/duvet.
- It doesn't look like a hospital bed. It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.
- It doesn't look like a hospital bed. It's designed for crips and lazy people alike.
- I spend a lot of time in bed and it's nice not having to lie completely flat to get the benefits of being in bed.
- It's really freaking comfy.
Disadvantages
Disadvantages
- It's a bit old and creaky.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.
- Anyone in bed with me needs to put up with whatever bizarre position I need to be in.
- Unlike hospital beds you can't adjust the height of the bed which makes changing clothes/pads from a lying position more physically demanding for a PA/carer/nurse.
- The massage function is more like a giant, loud vibrator.
How I got it:
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable. Instead she converted this to a 'direct payment'. This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed". A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.
- The community OT prescribed me a pillow lifter to help me sit up in bed but I found it far too uncomfortable. Instead she converted this to a 'direct payment'. This meant I was given money to buy something which fitted under the (intentionally broad) description of "a piece of equipment to rise from lying to sitting in bed". A bit of crafty ebaying and I had myself a double adjustable bed costing less than the direct payment.
Monday 2 April 2012
Guilt, grief and self doubt
Guilt has been somewhat of a constant companion throughout this illness. From the niggling doubts at the back of my mind whenever I rest, to the all encompassing sense of shame and failure after meetings or appointments with social services or doctors. It's always there - doubts about whether I'm doing enough to stay well and independent; guilt that I'm taking resources away from others.
For me, this seems to have been tied in quite strongly with grief. Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness. But it's also about control - the control of others, namely social services, the NHS and the DWP. They act as though if only they could grind me down enough, I would stop fighting for my rights.
Sadly, it's been working. The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to. I guess I thought people would judge me - but this is a blog, not a holy book. People do not need to hang on to my every word.
I had a realisation the other day as I was heading through a shopping centre in my powerchair. There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually. I then thought back to my own guilt when I was given an NHS powerchair. I felt guilty because I can walk 2 metres... occasionally. If I'm feeling guilty enough I might even walk 5! Looking back, this just seems ridiculous! You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally! My flat is much bigger than even my forced sickness inducing 5 metres!
The system is broken. It's scarred my thinking and hindered both my independence and my acceptance of impairment, but I'm working on it.
I will try not to feel guilty about not working.
I will try not to feel guilty about using a powerchair.
I will try not to feel guilty about needing care.
I still have something to offer in this world and no amount of prejudice will stop me from doing so.
For me, this seems to have been tied in quite strongly with grief. Feeling ashamed and guilty about everything is a convenient way of ensuring I never accept the true reality of my impairments and illness. But it's also about control - the control of others, namely social services, the NHS and the DWP. They act as though if only they could grind me down enough, I would stop fighting for my rights.
Sadly, it's been working. The main reason I've not written in this blog in so long is because I've felt as though nothing would be good enough, political enough, eloquent enough - because I've just not been well enough to write as well as I used to. I guess I thought people would judge me - but this is a blog, not a holy book. People do not need to hang on to my every word.
I had a realisation the other day as I was heading through a shopping centre in my powerchair. There is no chance on Earth I would be able to walk even 1% of the distance I had in the short space of time I was there and yet others were strolling around casually. I then thought back to my own guilt when I was given an NHS powerchair. I felt guilty because I can walk 2 metres... occasionally. If I'm feeling guilty enough I might even walk 5! Looking back, this just seems ridiculous! You can't survive without a wheelchair whilst only being able to walk 2 metres occasionally! My flat is much bigger than even my forced sickness inducing 5 metres!
The system is broken. It's scarred my thinking and hindered both my independence and my acceptance of impairment, but I'm working on it.
I will try not to feel guilty about not working.
I will try not to feel guilty about using a powerchair.
I will try not to feel guilty about needing care.
I still have something to offer in this world and no amount of prejudice will stop me from doing so.
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