I am an activist and campaigner and I learned how to be one from the climate justice movement.
As my mental health and then physical health deteriorated it became hard for me to participate in physical actions and so I did what I could online and in my home - and still do.
This week I realised how distant I feel from the climate justice community I was once part of, and for the first time I realised why.
It is nothing new to say that mostly the climate change movement doesn't consider the reality of disablement and nothing new to say that activists and campaigners often do not consider even basic access needs. (Note that this does not apply across the board and I am not suggesting that it is so)
What was a new realisation to me is how much rhetoric and implicit disablism that I had internalised.
I used to walk everywhere when I started uni - anywhere that was within an hour's walk I walked. I would feel lazy and extravagent for taking the bus - just think about the carbon. And then I had no choice but to take the bus because I was too sore and too tired. And then public transport became harder and harder to manage and I had no choice but to take taxis. And then I had to face the fact that I would have to learn to drive. I didn't learn at 17 because driving in a city that had 'good' public transport links was wrong.
I became vegan for the same reason. I can't cook from scratch any more, and my partner will start work as a junior doctor next year, so I am learning to make my peace with packaged, pre-chopped veg and microwave rice pouches to make it easier for us to eat.
You know what sparked the realisation though? My bendy joints and wonky autonomic nervous system and floppy blood vesssels have been joined by stroppy guts. It's been getting slowly worse, along with the rest of it. The list of foods I can't tolerate is getting longer. Another referral to another specialists, another 3 tablets to add to the 20 I take every day. And I've found that while (most) meat and dairy are on the list of foods I can't tolerate in any quantity (along with gluten, most veg, most fruit), eggs are alright.
Simple, right?
I feel like a failure. Every time I get in a taxi, or eat something non-vegan because it was easy and I can eat it I feel like a failure. I feel lazy, and wasteful and selfish. I would never feel the same about someone else in a similar situation, but I do towards me.
I have internalised this message that cycling is the only acceptable form of transport and that any form of high carbon convenience is absolutely wrong.
Part of that is my own neuroticism, granted, but a large portion of that is that the temptation as a campaigner or activist (or politician, or religious person) is to think and speak in binary. In right and wrong.
Binaries exclude.
It's in the grey and in the intersection that you find climate justice campaigners supporting the #nogobritain campaign - because the more people who can safely and comfortably access public transport, the more we can tackle our carbon footprint - it's there that you find feminists reminding us that climate change disproportionately affects women, and medics talking about the effect of the healthcare industrial complex on our environment as well as the catastrophic health issues climate change causes and will cause. It helps us to remember that if someone is overwhelmed with financial struggles, health crises, persecution, discrimination, if someone is afraid for their life, or doesn't know how they're going to feed their kids tomorrow, they will not be able to care about the fate of the planet in 5, 25, 50 years time.
That's why we need to make climate solutions cheap and easy, why industry needs to do their part and why we need to think really carefully before turning societal problems into individual problems with individual blame and individual solutions.
Maybe I can remind myself next time I get in a taxi that I'm working to make it possible for me to take the bus. And that even the best public transport system possible will not be accessible to everyone and sometimes it's my job to make sure my fellow climate campaigners understand that.
And here I fail to think of a wise and witty closing remark, so you can make one up for yourself...
At Both Ends of the Stethoscope.
Friday, 6 April 2012
Wednesday, 4 April 2012
#nogobritain
I'm sure you'll have heard about NoGoBritain - a campaign about the lack of accessible public transport provision, spearheaded by Tanni Grey-Thompson. Today if you visit #nogobritain you will see people live-tweeting their experiences of public transport provision. If you've not encountered these stories before they could be shocking, but a lot of disabled people could have reeled them off before they were even posted. A lot of public transport is still not accessible for physically disabled people (and a lot, I think, could be done to improve access for people who are learning disabled or have mental health impairments). Here, off the top of my head is a list of some ways public transport is not accessible to me.
Starting with when I was a wobbly walker rather than a wheelie :
- 'perching' benches that don't let you take your weight off your feet were no good for me
- buses with steps = ouch + trip hazard
- bus drivers almost never wait for people to sit down before pulling off (the number of falls this caused me I can't even count)
- this is compounded by wet and slippery floors (maybe can't be helped, but is still an access problem)
- the priority seats fill up first because they're closest to the door, and you'd be astounded at the effort people go to to avoid eye contact when they're sitting in them. People will point blank ignore requests, or simply refuse to move even when they've said that they don't need the seat
- that's if you can even get to the priority seats through the crowd of people standing (I used to leave early for uni to avoid rush hour)
- the number of times I was shouted at, sworn at, threatened, even physically assaulted on one occassion for not 'giving up my seat for someone who needs it' (can't possibly be disabled at 20) would make you disbelieve my earlier point!
- bus drivers here only stop if you've got up an are standing by the door. Ringing the bell isn't enough. Even when there are posters in the bus saying 'stay in your seat until the bus has stopped'
- you have to get to and from the bus stop. This is a problem of joined up design. For example, my local hospital is up hill, about 150m from the nearest bus stop, when a lot of the patient group are likely to use public transport (and the tiny car park makes it the only sensible option) and those going to a hospital are more likely than other destinations to have mobility impairments.
And that's just buses! Other forms have similar issues, but some extra...
- train stations an underground stations often feature stairs quite heavily
- mobility assistance needs to be booked 24 hours in advance, and requires being able to climb into the blue buggies
- underground stations are ridiculously hot and crowded, which as someone who faints frequently makes them no go areas
- when platforms are not put up on the departure board until 5 minutes before departure, or there are last minute platform changes, this is very problematic - I was once knocked over and stood on during a last minute platform change on my journey to a placement
- equally when long distance trains turn off reservations because the train is busy or whatever, this means that those who need a chair are often not able to find one. If you can find a member of staff then they can help, but when corridors are crammed full or they're far away this just isn't possible. One journey I ended up sitting in the luggage rack. Another (particularly memorable) journey was spent sitting on the floor of the toilet.
Since being a wheelie, I face many of the same issues. There is the benefit that no matter what happens I always have somewhere to sit. However, there are plenty more problems to replace that one! :
- Any time I want to use a train, I have to tell the station 24 hours in advance
- This by no means guarantees that the booked assistance will arrive. I now phone ahead to the station I'm going to an hour and half an hour before I get in to make sure they come to get me. Even if I can get myself and my wheelchair off the train without a ramp I generally can't make it all the way down a long platform under my own steam.
- I've had mobility assistance personnel forget about me, attempt to wheel me and the ramp simultaneously nearly pushing me off the edge of a platform, call me 'the wheelchair', dislocate my wrist by starting to push my chair when I'm already pushing, yadayadyada
- I can't get to my closest bus stop under my own steam because the pavement is so cracked and cambered
- I've found that 1 in 3 buses will be successful for me - 1 won't stop or the driver will say the ramp is broken / they have a bad back / there's a pram in it, 1 won't be accessible and 1 will let me on
- Particularly the route running to the hospital that most of my treatment is based out of never runs an accessible bus. I think this is because they are smaller and the roads are small are tight cornered, but the whys don't really matter when they have the same effect. Legally they'll have to solve it by 2015 anyway. In theory.
- Some local bus stops are too small for the bus to actually pull in to the pavement because there are cars parked at each end - this means the bus is too high from the ground for the ramp to work
- Some local buses have a kind of passageway through to the wheelie space, which is too narrow for my standard sized wheelchair to fit through
- On trains without a wheelchair space I just kinda have to sit by the doors. On a busy service this is really scary when a wave of people just rushes at you. Also, I'm at crotch/bum height to some and armpit height to others. Joy.
- I have had people remove to move luggage from the wheelie space (I know the luggage racks are small, but if you brought 2 smaller bags rather than 1 big one it would fit in the overhead rack / under your seat / on your lap). I have had people hem me in with luggage so I couldn't use the toilet for an entire journey. For that matter, the toilets are not accessible for me without assistance.
- There are normally 1 or 2 wheelchair spaces on a train. If they're booked you have to change your plans. If the standard class space is booked but the first class is not, you can't use the first class space without a first class ticket.
I'm sure I've forgotten some.
As well as this, being out in public as a wheelchair user can be quite scary. I've been shouted at and had stuff thrown at me, and it's a year since I've been using a chair at all - 6 months since I've been using it regularly.
For that matter, taxis are rubbish too sometimes, but that's not the point of today. They are the only way that I can leave the house independently at the moment. I'm learning to drive so that I can have some more independence, and not have to rely on taxis which are expensive and unreliable. Ideally I would be able to have my car for some things and use public transport for the rest - I don't want to be reliant on a car - but that own't be possible at the moment. It's too unpredictable, and as someone with chronic fatigue and chronic pain, I can't be as flexible (pun intended) about things like how long I'm out of the house as other people.
Small improvements will be helpful, but not helpful enough. Because my home isn't level access I couldn't store a powerchair or mobility scooter. It's this compound inaccessibility that is really disabling. Getting to an inaccessible bus from an inaccessible home on inaccessible pavement going to an inaccessible workplace. Without the support of my partner to help me use public transport, or money from my parents that allows me to use taxis sometimes (although my activities are very limited by my taxi budget) I wouldn't be able to leave the house at all.
Starting with when I was a wobbly walker rather than a wheelie :
- 'perching' benches that don't let you take your weight off your feet were no good for me
- buses with steps = ouch + trip hazard
- bus drivers almost never wait for people to sit down before pulling off (the number of falls this caused me I can't even count)
- this is compounded by wet and slippery floors (maybe can't be helped, but is still an access problem)
- the priority seats fill up first because they're closest to the door, and you'd be astounded at the effort people go to to avoid eye contact when they're sitting in them. People will point blank ignore requests, or simply refuse to move even when they've said that they don't need the seat
- that's if you can even get to the priority seats through the crowd of people standing (I used to leave early for uni to avoid rush hour)
- the number of times I was shouted at, sworn at, threatened, even physically assaulted on one occassion for not 'giving up my seat for someone who needs it' (can't possibly be disabled at 20) would make you disbelieve my earlier point!
- bus drivers here only stop if you've got up an are standing by the door. Ringing the bell isn't enough. Even when there are posters in the bus saying 'stay in your seat until the bus has stopped'
- you have to get to and from the bus stop. This is a problem of joined up design. For example, my local hospital is up hill, about 150m from the nearest bus stop, when a lot of the patient group are likely to use public transport (and the tiny car park makes it the only sensible option) and those going to a hospital are more likely than other destinations to have mobility impairments.
And that's just buses! Other forms have similar issues, but some extra...
- train stations an underground stations often feature stairs quite heavily
- mobility assistance needs to be booked 24 hours in advance, and requires being able to climb into the blue buggies
- underground stations are ridiculously hot and crowded, which as someone who faints frequently makes them no go areas
- when platforms are not put up on the departure board until 5 minutes before departure, or there are last minute platform changes, this is very problematic - I was once knocked over and stood on during a last minute platform change on my journey to a placement
- equally when long distance trains turn off reservations because the train is busy or whatever, this means that those who need a chair are often not able to find one. If you can find a member of staff then they can help, but when corridors are crammed full or they're far away this just isn't possible. One journey I ended up sitting in the luggage rack. Another (particularly memorable) journey was spent sitting on the floor of the toilet.
Since being a wheelie, I face many of the same issues. There is the benefit that no matter what happens I always have somewhere to sit. However, there are plenty more problems to replace that one! :
- Any time I want to use a train, I have to tell the station 24 hours in advance
- This by no means guarantees that the booked assistance will arrive. I now phone ahead to the station I'm going to an hour and half an hour before I get in to make sure they come to get me. Even if I can get myself and my wheelchair off the train without a ramp I generally can't make it all the way down a long platform under my own steam.
- I've had mobility assistance personnel forget about me, attempt to wheel me and the ramp simultaneously nearly pushing me off the edge of a platform, call me 'the wheelchair', dislocate my wrist by starting to push my chair when I'm already pushing, yadayadyada
- I can't get to my closest bus stop under my own steam because the pavement is so cracked and cambered
- I've found that 1 in 3 buses will be successful for me - 1 won't stop or the driver will say the ramp is broken / they have a bad back / there's a pram in it, 1 won't be accessible and 1 will let me on
- Particularly the route running to the hospital that most of my treatment is based out of never runs an accessible bus. I think this is because they are smaller and the roads are small are tight cornered, but the whys don't really matter when they have the same effect. Legally they'll have to solve it by 2015 anyway. In theory.
- Some local bus stops are too small for the bus to actually pull in to the pavement because there are cars parked at each end - this means the bus is too high from the ground for the ramp to work
- Some local buses have a kind of passageway through to the wheelie space, which is too narrow for my standard sized wheelchair to fit through
- On trains without a wheelchair space I just kinda have to sit by the doors. On a busy service this is really scary when a wave of people just rushes at you. Also, I'm at crotch/bum height to some and armpit height to others. Joy.
- I have had people remove to move luggage from the wheelie space (I know the luggage racks are small, but if you brought 2 smaller bags rather than 1 big one it would fit in the overhead rack / under your seat / on your lap). I have had people hem me in with luggage so I couldn't use the toilet for an entire journey. For that matter, the toilets are not accessible for me without assistance.
- There are normally 1 or 2 wheelchair spaces on a train. If they're booked you have to change your plans. If the standard class space is booked but the first class is not, you can't use the first class space without a first class ticket.
I'm sure I've forgotten some.
As well as this, being out in public as a wheelchair user can be quite scary. I've been shouted at and had stuff thrown at me, and it's a year since I've been using a chair at all - 6 months since I've been using it regularly.
For that matter, taxis are rubbish too sometimes, but that's not the point of today. They are the only way that I can leave the house independently at the moment. I'm learning to drive so that I can have some more independence, and not have to rely on taxis which are expensive and unreliable. Ideally I would be able to have my car for some things and use public transport for the rest - I don't want to be reliant on a car - but that own't be possible at the moment. It's too unpredictable, and as someone with chronic fatigue and chronic pain, I can't be as flexible (pun intended) about things like how long I'm out of the house as other people.
Small improvements will be helpful, but not helpful enough. Because my home isn't level access I couldn't store a powerchair or mobility scooter. It's this compound inaccessibility that is really disabling. Getting to an inaccessible bus from an inaccessible home on inaccessible pavement going to an inaccessible workplace. Without the support of my partner to help me use public transport, or money from my parents that allows me to use taxis sometimes (although my activities are very limited by my taxi budget) I wouldn't be able to leave the house at all.
Wednesday, 29 February 2012
Rare Disease Day
It's the 5th international Rare Disease Day today. This year's theme is Solidarity.
I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.
Please also read BendyGirl's post on it here.
I'd like to start by saying that I am one of the lucky ones.
My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.
I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.
For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.
It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.
It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.
It means feeling really, really alone and then realising that you aren't so alone after all.
I don't have anything particularly groundbreaking to say, but I'd like to write a bit about what it feels like to have a rare disease and why solidarity has been so important to me in my bendy journey.
Please also read BendyGirl's post on it here.
I'd like to start by saying that I am one of the lucky ones.
My condition is relatively common - I'm not one of seven people in the world with it, it's not a never-before-seen syndrome without a name, about half of doctors I mention it to show at least a brief flicker of recognition, there are national support groups for the different aspects of my condition, there are specialists who dedicate a large portion of their working life to the management of bendies. And, diagnoses are increasingly common as awareness increases - it's certainly more common than it was thought 10 years ago, although it's still rare. I have two friends with the same condition that I knew before I was diagnosed and many more since.
I am also lucky because my condition is sort-of not life-limiting. 'Sort-of' because it is sometimes. Other subtypes have a worse prognosis, indeed my subtype is commonly said not to be life-limiting at all, but you don't have to spend long in the online EDS community to know better.
For me (and everyone's experience will of course be different) having a rare disease means being disbelieved, means frustration, isolation, exhaustion and endless reams of paperwork. It means days when all the rubbish surrounding EDS is almost worse than the symptoms themselves. It means sharing my personal medical details with every medic who asks in the hope that they'll recognise EDS in someone else. It means constantly finding that bits and bobs of your life are 'not normal' "what do you mean you can't scratch the whole of your own back?". It means setting firm boundaries - with friends and family, with healthcare professionals, with work, with myself. It means constant self-advocacy.
It also means community - other bendies, other folk living with rare conditions, other disabled people. Other people who can say that most powerful phrase "me too". It means being able to draw on collective wisdom and to share tips in turn. It means finding out which friends will come and sit in front of the TV with me while I slur at them incoherently, or to scrape me of the floor if I fall and Beanie's out, or remember when I have important appointments, or celebrate the small acheivements, or advocate for me when I just can't anymore, or offer a shove without being asked and then take off at a run cackling maniacally, or remind me that it is enough simply to be me.
It means identifying as disabled and solidarity with other disabled people in the face of discrimination and cuts to benefits and services or lack of provision in the first place. It means recognising the intersection of non-privileged identities and solidarity with other people who face discrimation, violence and oppression because of their race, gender, sex, sexuality, class, or other factors.
It means feeling really, really alone and then realising that you aren't so alone after all.
Tuesday, 21 February 2012
Pacing, Guilt and Self Compassion
This is one of those blog posts that started as a comment but got too long! Before you read this, please head over to Everyday Wishes and read Jo's post on pacing, which is great. Jo writes really interesting posts about living (versus surviving) life with chronic illness so have a click around while you're there =]
I think one thing about pacing folk don't talk about a lot is how spoon sucking guilt is. Pacing can cause guilt for so many reasons. The worst for me is when someone else has to pick up the slack when I don't do something - e.g. I don't do the washing up so Beanie has to do it. I worry a lot about the environmental impact of driving (or being driven) everywhere, of pre-prepared food, of all the packaging my meds come in. I hate hate hate it when people think that I'm lazy.
This guilt has got a lot easier to deal with. If I'm honest the biggest part of this acceptance was external validation. It is a lot easier for me to assert my boundaries with friends/family now 1) they know that I'm sick 2) that diagnosis has given me a framework for understanding my body, which means that I can explain that I need to save spoons, rather than just saying "I'm tired".
That's not to say it's not still hard. It will be a lot easier to pace guilt free next year when Beanie is working and we can afford a cleaner, for example.
Also, part of the privilege of having a visible impairment* is that strangers question me a lot less. If the guy delivering my supermarket shop sees me in my chair he isn't annoyed that I've asked him to bring heavy shopping upstairs to my flat.
External recognition has been incredibly helpful, but I am also learning to respect and assert my needs, and my wants.
It has meant coming to a new understanding of my body. I have lived in boom/bust since certainly my early teens and my way of coping until recently had been to budget 'bust time'** - for example a weekend away would take a couple of weeks to recover from so those two weeks of only getting up for lectures/placement would just be the price. Every couple of years I would have a breakdown, scrape through academically, pick up the pieces and start again. This cycle was making me sick, was ruining my career before it'd even started and was putting enormous pressure on my relationships because I was so unreliable.
It was never going to be sustainable. I am now aware that if I'm ever going to be a doctor I am going to need to be very careful with my energy. I am also aware that medicine is not worth all my energy. If it ever gets to the point where the day-to-day of medicine leaves me with no energy to enjoy my family and friends, no energy for creativity or grappling with big and important ideas, then I have to stop. No matter what anyone says, you can't be a good doctor that way.
(Sadly, I'm also aware that next year a lot of this wil have to go out of the window, but for a few months I can deal with studying and recovering from studying being it if that means I graduate. Although I have to say that I'm dreading it more than a little.)
Pacing teaches me to respect that creative and spiritual expression are access needs and priorities if I am to be healthy. It teaches me to be patient and mindful. It has encouraged me to try and make our home a beautiful, welcoming and peaceful space because I spend a lot of time here (remember Cousin Helen from What Katy Did?).
This self-respect in term has fed and been fed by my political understanding of disablement. Pacing teaches me to respect myself as a person beyond capitalist understandings of productivity and efficiency. My worth is not based on money. I have intrinsic value as a person. As a person I deserve love and respect, and therefore everyone I meet deserves the same.
But because life is never simple...
Sometimes I have 'meta guilt' about feeling guilty for pacing because it doesn't fit with my understanding of disablement. I feel guilty that I can afford to pace in this way, because I have the money to (although I equally recognise that I can't afford not to). Still when pacing starts to work and I feel a bit better, I decide that I'm being overdramatic, ease up, and crash. I let people who don't take my condition seriously make me believe that I'm being lazy and should do more. I have to be mindful not to completely give up any responsibility for housework etc, even if I can only do teeny tiny bits. Sometimes I feel left out or lonely, sometimes I get bored, sometimes I get frustrated. Often I get angry when people say stupid things like "oh, I wish I could take it easy like you do, I just have to be all go, go, go or I get bored".
It's baby steps I think.
Pacing means making lots of little decisions every day and then letting them go. Sometimes you'll make the wrong decision, you'll learn from it and move on. Sometimes you'll be in a position where making the wrong decision in terms of pacing is the right thing to do. Making the decisions gets easier, living with the decisions get easier, resting get easier, downscaling activities gets easier. And for me, the effort is totally worth it.
*I recognise the really complex interaction of relative non/privilege being those with in/visible impairments, this is not me saying that visible impairments always make life easier
**I recognise the pun. As to whether or not it was intentional, I couldn't possibly comment ;)
I think one thing about pacing folk don't talk about a lot is how spoon sucking guilt is. Pacing can cause guilt for so many reasons. The worst for me is when someone else has to pick up the slack when I don't do something - e.g. I don't do the washing up so Beanie has to do it. I worry a lot about the environmental impact of driving (or being driven) everywhere, of pre-prepared food, of all the packaging my meds come in. I hate hate hate it when people think that I'm lazy.
This guilt has got a lot easier to deal with. If I'm honest the biggest part of this acceptance was external validation. It is a lot easier for me to assert my boundaries with friends/family now 1) they know that I'm sick 2) that diagnosis has given me a framework for understanding my body, which means that I can explain that I need to save spoons, rather than just saying "I'm tired".
That's not to say it's not still hard. It will be a lot easier to pace guilt free next year when Beanie is working and we can afford a cleaner, for example.
Also, part of the privilege of having a visible impairment* is that strangers question me a lot less. If the guy delivering my supermarket shop sees me in my chair he isn't annoyed that I've asked him to bring heavy shopping upstairs to my flat.
External recognition has been incredibly helpful, but I am also learning to respect and assert my needs, and my wants.
It has meant coming to a new understanding of my body. I have lived in boom/bust since certainly my early teens and my way of coping until recently had been to budget 'bust time'** - for example a weekend away would take a couple of weeks to recover from so those two weeks of only getting up for lectures/placement would just be the price. Every couple of years I would have a breakdown, scrape through academically, pick up the pieces and start again. This cycle was making me sick, was ruining my career before it'd even started and was putting enormous pressure on my relationships because I was so unreliable.
It was never going to be sustainable. I am now aware that if I'm ever going to be a doctor I am going to need to be very careful with my energy. I am also aware that medicine is not worth all my energy. If it ever gets to the point where the day-to-day of medicine leaves me with no energy to enjoy my family and friends, no energy for creativity or grappling with big and important ideas, then I have to stop. No matter what anyone says, you can't be a good doctor that way.
(Sadly, I'm also aware that next year a lot of this wil have to go out of the window, but for a few months I can deal with studying and recovering from studying being it if that means I graduate. Although I have to say that I'm dreading it more than a little.)
Pacing teaches me to respect that creative and spiritual expression are access needs and priorities if I am to be healthy. It teaches me to be patient and mindful. It has encouraged me to try and make our home a beautiful, welcoming and peaceful space because I spend a lot of time here (remember Cousin Helen from What Katy Did?).
This self-respect in term has fed and been fed by my political understanding of disablement. Pacing teaches me to respect myself as a person beyond capitalist understandings of productivity and efficiency. My worth is not based on money. I have intrinsic value as a person. As a person I deserve love and respect, and therefore everyone I meet deserves the same.
But because life is never simple...
Sometimes I have 'meta guilt' about feeling guilty for pacing because it doesn't fit with my understanding of disablement. I feel guilty that I can afford to pace in this way, because I have the money to (although I equally recognise that I can't afford not to). Still when pacing starts to work and I feel a bit better, I decide that I'm being overdramatic, ease up, and crash. I let people who don't take my condition seriously make me believe that I'm being lazy and should do more. I have to be mindful not to completely give up any responsibility for housework etc, even if I can only do teeny tiny bits. Sometimes I feel left out or lonely, sometimes I get bored, sometimes I get frustrated. Often I get angry when people say stupid things like "oh, I wish I could take it easy like you do, I just have to be all go, go, go or I get bored".
It's baby steps I think.
Pacing means making lots of little decisions every day and then letting them go. Sometimes you'll make the wrong decision, you'll learn from it and move on. Sometimes you'll be in a position where making the wrong decision in terms of pacing is the right thing to do. Making the decisions gets easier, living with the decisions get easier, resting get easier, downscaling activities gets easier. And for me, the effort is totally worth it.
*I recognise the really complex interaction of relative non/privilege being those with in/visible impairments, this is not me saying that visible impairments always make life easier
**I recognise the pun. As to whether or not it was intentional, I couldn't possibly comment ;)
Tuesday, 31 January 2012
31st January
Today last year I got my official bendy diagnosis.
It was awful.
Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.
This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.
Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.
Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.
Hooray!
It was awful.
Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.
This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.
Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.
Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.
Hooray!
Breakthrough
Again, catharsis and too-early morning ramblings. Feel free to skip.
Dear GP,
It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.
This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.
Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.
It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.
When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.
I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.
Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?
The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.
Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.
And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?
Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?
Nope. Once again I would just get the message that I am a liar who deserves to be in pain.
That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?
I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.
You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.
Flo
Dear GP,
It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.
This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.
Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.
It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.
When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.
I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.
Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?
The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.
Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.
And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?
Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?
Nope. Once again I would just get the message that I am a liar who deserves to be in pain.
That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?
I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.
You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.
Flo
Sunday, 29 January 2012
In which I terrify a (relatively) junior doctor
Where was I? Oh yes, that's right, GP appointment on Friday.
I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.
Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.
My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*
Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.
So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.
She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.
And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.
Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.
For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :
- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"
Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :
1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)
And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"
*sigh*
I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.
Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)
* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).
** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.
I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.
Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.
My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*
Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.
So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.
She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.
And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.
Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.
For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :
- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"
Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :
1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)
And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"
*sigh*
I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.
Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)
* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).
** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.
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