Lots of firsts =]

Today I have done the following things for the first time :

- booked my practical driving test
- made my own 'baby' food
- bought a wobble cushion (to help with core stability)
- bought kinesio tape (for proprioception - don't worry bendies, I remembered to buy undertape as well)
- bought vega vegan / gluten free protein powdery stuff (as part of my more liquid diet - see previous post)
- bought nuun and high 5 zero electrolyte replacement fizzy tabs
- bought summer arthritis gloves (too hot for my winter ones)
- bought a book about POTS (the kind of dysautonomia I almost certainly have)

All of these things cost me money. All of them are only necessary either because of my impairment/s* or because I am disabled. Yes, some of it is stuff that in an ideal world a physio or OT would have given me, but we don't live in an ideal world. It takes a lot to persuade the NHS to give you something (e.g. a splint) and when they do it tends to be low quality (designed for short-term wear for an acute injury), ugly (beige - don't get me started on the racial privilege behind the term 'flesh coloured'), 'unprofessional' (for aforementioned reasons get scruffy and dirty quickly, uncomfortable (in a one-size-fits-none kind of a way e.g. cheap splints that don't adjust well enough to work with everyone's body), designed to be hidden (see beige) and therefore somewhat disablist (I would rather have a choice of colour to go with what I wear that isn't scruffy, dirty and ugly so that I could wear my splints without feeling the need to hide them. I am not ashamed of my bendy joints).

If you want something different - something designed for longterm use in the confidence that it will be replaced when necessary, something smart / pretty, something that fits properly so I can actually use it rather than it ending up in the splint graveyard - then it can take years, and complaints, and being a pain in the arse, and feeling like you are being done a favour. And even then you will be expected to compromise - price rules. If I buy things myself then I get to choose the design and colour, I get to look at the ethical practices of the company I'm buying from. I get to decide when it needs replacing, and when it's just not working. The only downside is not being able to try things out beforehand, but there are online reviews and return policies, and shops.

Let me give you an example. I needed lighter compression gloves (having bought the thicker ones myself) for the not-winter. My OT only had lycra ones (snags easily) in beige (gets grubby quickly) poorly made (seams started unravelling after 1 hour) with fingers (I need fingerless so I can you know write/type/crochet/eat). They were only useable when I cut the fingertips off and sewed them up, but even so I doubt they'll last a wash. I don't understand why there can't be a prescription like system when if something works you can get it again when the typical lifespan of the product has passed (e.g. yearly). Well, I do understand. The NHS does not always do chronic illness well. 'Health' and 'disability' equipment has a massive mark-up. Especially anything that's a bit different. To get high compression tights / socks that aren't black / beige I need to import them from the states. The tights cost £60, plus postage, plus import tax. I guess this is partly any 'speciality' and partly because they are designed to function alongside US insurance companies and people who can afford to pay them.

Today's 'firsts' cost about £200. I have been delaying getting hold of things I really need because I didn't have the money, I am lucky that my parents were able to help me out. This is why I need DLA - because being disabled is expensive - both in day-to-day stuff (e.g. learning to drive costs more in an automatic than a manual) and in specific equipment.

On a more positive note, each one of these things represents a step forward in the holistic management of my health. None of it's 'fire fighting'. It's all planned, it's all part of a system, it's all a little bit of the whole. I'm feeling good about that.

If you've tried any of the products listed can you comment and let me know how you got on with them? Thanks =]

*What do you guys think? Do multiple medical conditions / symptoms equal multiple impairments? Or is it all together my impairment singular? Does it matter? Am I rambling?

Tummy Troubles

I don't post for a while and then they mess with the blogger interface. *typical* I guess this is why a couple of folk have decamped to wordpress recently.

Anyway. Enough of the boring stuff.

I'm just checking in with an update for those who are interested. And so that my brainfogged brain will remember the sequence of events a few months from now...

As you'll know if you've been reading a while, I've been having a lot of problems with nausea and vomiting (plus pain, bloating, spasms and other fun stuff). This has been going on for years, but as with everything it seems, has been getting steadily worse to the point that it's making life complicated. I think in part having my pain managed a bit means that I've noticed abdo symptoms more. And having a partner who will say 'that's just weird' every time my body does something weird has given me a lot more  insight into what's normal and what's not.

So, new GP (have I mentioned new GP yet? wonderfully competent and a bit lovely) has actually listened, examined me, taken bloods and started meds while waiting for the referral to gastro she's made to come through. I get tears in my eyes after each appointment, because 'ordinary' treatment seems like overwhelming generosity given experience with previous GP. Makes me even more tempted to 'name and shame'. Not that I will, but I am going to make a complaint to previous surgery I think.

I've been started on metoclopramide, which I think is helping, but also I've read Living (Well!) With Gastroparesis (which is my queried diagnosis) and it was really helpful.

There are some foods that are very clearly triggers, and others that I'm not sure about. I've cut back to liquids and purees, gluten, dairy, meat and soy free for a few days. I have a list of foods that I'm pretty sure are 'safe' to add in again over the next few days fairly quickly, and then I'll trial soy and then gluten. I'm vegan anyway - although these issues have made me more flexible because my diet's become even more limited and eggs / small portions of lean meat seem to sit ok. I'd like to get back to being able to cut out most meat but I'm going to see how this goes.

Was a bit upset yesterday that I still had a lot of pain on only liquids, but I hope that this can help a bit.

I don't really know where my head is to be honest. No sooner does one thing settle down a bit than another thing flares up. Still, I feel less like I'm fighting fires with new GP on side. I feel like I'm making progress slowly towards the bigger things - DLA, driving, new GP.

We shall see how this new chapter unfolds.

Anxiety

I've been feeling very anxious the last few days.

It's an odd one for me. It is almost certainly in part physiological - my screwy nervous system making me hyperventilate / giving me palpitations - and my brain frantically scanning its memory banks to find a worry to put with that feeling to make it all make sense.

My brain obviously hasn't yet quite got the bendy thing.

There has been a lot going on though. My DLA form was finished and submitted 10 days ago, my blue badge application is ready to take in, I've been getting settled in with the new GP and getting used to the feeling of being listened to (which in turn has meant some mourning for the bad GP situation I've been in for so long), I've had productive OT and orthotics appointments and social services are finally coming out on Friday. My official request to the medical school for adaptations is nearly ready to send.

That's a lot of stuff to get my head around - on top of the normal day-to-day life admin.

Also there's been bendy body stuff to deal with. A couple more joints have started significantly misbehaving, I've been referred for testing for gastroparesis and other GI nonsense. My body has gradually changed to a point where I sometimes feel a bit alien within it.

There's a little voice at the back of my head telling me that if I hadn't taken a year out I'd have got my exam results by now, would know what job I'd be doing, would be getting ready to start work. Watching Beanie do all the things I was supposed to be doing simultaneously makes me feel left behind and also reminds me that there is absolutely no way that I'd have made it this far.

Then there's the not insignificant matter of getting hitched in June. All very exciting but also quite busy making!

Anxiety is to be expected I think, but it's also quite hard to deal with - both because it is paralysing, so nothing gets done and because I'm alone a lot of the time and there's only so much I can talk myself down.

This is one of those times where a history of mental wonkiness comes in helpful. I have at my disposal a folder that started with some CBT and IPT worksheets to which I've added over the years notes from pain management, mindfulness, fatigue management, meditation/relaxation, time management, self-compassion and life organisation type books that I've found helpful. Somewhere in that folder I can generally find something to help me get through a bad patch.

For now my strategy is gentle routine (lots of 'unscheduled' time written in) so that I have time set aside to deal with anxiety-provoking stuff and time that is specifically not for that (so I don't have to worry about it then), trying to get out of the house every day, getting to bed on time (first writing a worry list to symbolically set aside) and doing things I enjoy that don't need my full concentration (like easy crochet).

So far it seems to be helping. Well, that or the chocolate soy milk I'm currently relishing =]

EcoDisablism

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...

#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.

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.

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 ;)