Fluctuation

Last week I felt fantastic. Well, my tummy was bad, but my joints had relatively little pain and I had lots of energy (again, relatively). As a consequence of being a bit more mobile around the flat I had a couple more faints than usual, but it was worth it.

I got a lot done - things like laundry that are impossible when my joints are bad, but also made sure I took time to rest, to avoid boom/busting. Doing things like crochet, or clearing out my email inbox which require sitting down but make me feel like I'm getting something done are perfect for days like that.

This morning I woke up 3 times during the night with joint pain and the nausea is almost overwhelming. I had plans, but I can't do any of them. In a more accessible flat, if I had my wheelchair up here then I could, but for now I'm on the sofa under a blanket with crochet, the cat and a sick bowl.

There was no warning for this. It wasn't caused by anything I didn't do. Just a night disturbed by pain.

It gets really frustrating - I do so much stuff to keep myself as healthy as possible - special diet, exercises, sleep routine, aids - but sometimes I get days like today that remind me that really these things give me an illusion of having more control than I have. That's a rubbish thing to be reminded of.

Sorry if this makes little sense, I'm tired. Something more cheerful next time, I promise

Endoscopic Gastroscopy

I got a letter yesterday saying that next Friday afternoon I am to have an endoscopy. This came out of the blue. Yes, I've had a gastro referral, but I haven't seen them yet and my GP didn't indicate that I would need them. Allow me to list my frustrations :

1) One week's notice - assumes both that I and the person I will need with me to leave afterwards will not have something else planned *and* that as someone with a complex medical picture I won't have to clear / discuss this procedure with my other health care providers
2) The information leaflet was shockingly bad - not convinced I would've know what the procedure entails if I didn't already
3) The leaflet is very much trying to persuade me to have anaesthetic spray not sedation. I imagine (especially as it'll be a Friday afternoon) that I'll have to fight to be sedated - necessary because the spray wouldn't work on my EDSy throat and my oesophagus has horrible spasms which are likely to happen and I would rather be out of it
4) It won't find anything - I've been on omeprazole for over a year and I'm now on prokinetics. There is nothing in the information about stopping these meds, both of which are pretty effective, so anything they do see will be incidental to the actual problem. I don't know whether to stop them today - tried to phone to ask (normal guidance is to stop anywhere from 2 weeks to 3 months before) but couldn't get through. There are other problems that they might see (e.g. dysphagia, hiatus hernia) but might not record if that's not the reason for referral.

I'm not hugely scared about the procedure itself - yes, I'm more likely to have complications (e.g. perforation) due to my EDS but it's still not hugely likely - and if it does, a hospital with operating theatres and a gastro team is among the best places for it to.

I'm scared that someone will pull one of my joints out when I'm sedated (I'm especially concerned about my neck) and that my weird nervous system reacts oddly to medications, particularly sedatives - making me extra hard to rouse, or mucking up silly little functions like, y'know, breathing and circulating blood.

I would feel most comfortable if it went like this :
- I get to talk to the person doing the procedure about the specific issues that they will have to bear in mind. I would like everyone who will be part of the procedure to be told this stuff.
- Beanie comes into the room with me so that I know someone is keeping an eye on my obs and joints for me - because it requires a degree of experience

Beanie thinks that this will put their backs up and that if something's happened her being there won't stop it. I honestly don't think I'm being overcautious. It is not difficult to do me major damage.

I think I will chat to them, and if they're ok then I'll let them go ahead, but if I'm not comfortable Beanie comes in or I don't have it. I'm open to other opinions though, especially if you've had one before.

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.