Neurally Mitigated Syncope

Last October I was diagnosed with a form of Dysautonomia called Neurally Mitigated Syncope. It’s also called Autonomically Mitigated Syncope, Vasovagal Syncope and Reflex Syncope, just to make things complicated, but all four terms refer to the same condition. I had thought that I might have POTS, which is common with EDS, but some of the specifics of POTS didn’t seem to match what I was experiencing, but the syncope makes so much sense.

I’ve been feeling dizzy quite a lot of the time, and my GP referred me to a neurologist, who scheduled me for a tilt table test. The wait for the appointment was about 8 months, but I’m used to long waiting lists now. I’m glad I live in London, as this is the centre I’d have been sent to wherever I was in the country.

My tilt test was quite early in the morning, and having planned ahead, I actually arrived before the technician did. When everything was ready, she called me in and explained how everything would happen. We talked about my symptoms and when they happen, and she answered all my questions.

I had to lie down on a bed and was strapped to various bits of equipment. There was an ECG, a blood pressure machine and something to measure my breathing. While I was lying down, I had to do various tests to put me under stress to see what my reaction was.

First up, I had to squeeze a rubber ball. This was meant to be for 3 minutes but I could only manage 2 before my hand became too painful. I then had to do various different types of breathing, and have some bloods taken. Then came mental maths- counting backwards in 7s from 300, which is more challenging than you think when you’re under pressure. Finally, I had to have an ice pack on my hand for a few minutes.

Then it was time for the tilt part of the tilt test. I was able to rest for a couple of minutes after the other tests first, and the blood pressure monitor was reattached. Because it was so heavy it had subluxed my wrist and my fingers had changed colour, but I was able to click it back into place. I also stretched my legs a bit as my knees were complaining after lying flat for so long.

Being tilted up was definitely the worst bit. I had to stay like that as long as I could, and the technician had various things they needed to try to get me to faint. For me, it was taking blood. I could feel myself going, and I was tilted back down.

After I’d settled and was able to sit up, I ate some of the snacks I’d brought with me. It was a really unpleasant experience but I knew that going in, so I was prepared to just do my best with everything that was thrown at me so that there would be good results for the consultant to look at. I was fitted with a 24h blood pressure monitor and given some tasks to carry out with it before bringing it back the next day.

About a month later I saw the consultant again, and she explained what had been going on as well as suggesting some things to help combat it. She said that people like me rarely actually faint because we’re so good at mitigating it- sitting down or crouching to make sure that we don’t keel over. She explained a couple of extra measures I can take like wearing flight socks, and making sure I eat plenty of salt. I now carry a little pot of salt with me to add to food when I’m out and about.

Now, I’m waiting on a group session for other people with syncope, to help us understand how to live with the condition. There aren’t really any pharmacological solutions, so it’s all about lifestyle and doing things to make sure you don’t faint.

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Please Offer Me A Seat

I’m so thrilled that Transport for London are now doing a week’s worth of publicity around priority seats as part of their Travel Kind initiative. I’m absolutely delighted to be a part of this campaign. The please offer me a seat badge is such a wonderful initiative and I’m so pleased that more awareness will be raised. The please offer me a seat badge is for people with invisible disabilities and/or chronic conditions who struggle to stand on public transport.

I wear a badge because I have a condition called Hypermobile Ehlers-Danlos syndrome. This is a collagen disorder that essentially means I’m too stretchy. While this might make me sound like Elastagirl, it’s not much fun. It means that my joints don’t stay in place very well, and that I live with chronic pain. It also affects other parts of my body, for example my circulation, which means I often get dizzy.

Getting a seat on public transport means that I’m much better able to manage my pain. It’s not just the standing for the twenty or so minutes that I find hard, but also holding onto a pole, especially if it’s above my head. If I can sit down, it means that I don’t have to worry about falling over, or my arm getting painfully yanked about as the tube moves.

You can read more about my experiences here on my blog, where I’ve documented my first experiences with the badge and why it’s so important to me, as well as on Twitter where I write about each time I get the tube or a bus.

Thank-you so much to those who look up and offer me a a seat when I ask, and most especially to those who notice my badge even before I open my mouth. It makes an enormous difference.

Conferencing in Chronic Pain

Recently Ellie Makin Roberts put together a great thread of suggestions for dealing with conferences with anxiety. I’ve been thinking about things I do, consciously or unconsciously, to make the conference experience easier for myself. I have hypermobile Ehlers Danlos Syndrome, and the main issue for me at conferences is dealing with my chronic pain, and tendency to be quite dizzy.

The thing that’s been most helpful and most difficult is sitting down. This sounds like such a simple thing to do, but it’s taken me years to become comfortable with saying that I can’t stand any more. This is particularly difficult at evening events or lunchtimes, as these tend to take place in spaces where there are no or few seats. However, if I stand for about 10 minutes, my feet go numb, which isn’t great. In London, when I’m wearing my please offer me a seat badge, I feel much more confident saying ‘I need to sit down now,’ or ‘can we move, I need to sit down.’ I’m an early career researcher, and so this makes me feel very vulnerable- who am I to ask a senior academic to move our conversation to a seated area? But, this is crucial to me saving enough spoons to be able to go to the sessions I want to for the rest of the conference.

Missing sessions is another strategy I use. Again as an ECR I feel like I need to be at, and be seen at, as many things as possible. However, this just means in practice that I’m absolutely exhausted after a conference. I’ve become much more brutal in deciding what I will go to- usually things that are directly related to my research, or things that I’m particularly interested in. I have to accept that I’m just not going to make it to everything. I did this at a week-long conference last summer, and rested or, e.g. went swimming during the sessions I didn’t go to. More and more conferences are now having quiet rooms, which is a great space for me to go. Otherwise I’d go to a café away from the main action, or back to my room if I’m staying nearby.

I try to drink water as much as I can. Coffee flows freely at most conferences, but I can’t drink too much or it exacerbates my problems. I usually carry a water bottle with me, and top it up when I can. I drink during sessions as well. Remembering to stay hydrated is really important and means I can focus better for longer.

If accessibility is not clear beforehand, I will often email organisers. Conferences are becoming increasingly good at putting access information on their website, or emailing it to delegates in information packs about the event. What I need to know is about steps- I can manage one flight just about, but prefer step free access if at all possible. If the conference is on two floors connected only by steps, I’ll need to plan out my day to make sure I’m not going up and down too much. If you’re organising a conference, there’s a great example of an access statement here.

I now also try to do a couple of other things, which are much more easily said than done. One is eating when I need to. I get quite dizzy now, and the main thing that helps with this is salt. So, I generally carry a box of salted nuts with me, and eat them if I feel a bit funny, so that I can keep concentrating and not worry about fainting. Even if I’m sitting down, I can still get pretty light-headed. I get some strange looks bringing out my box of nuts, but if I don’t eat them, I’d just feel awful and wouldn’t be able to pay attention properly to the papers.

Another is moving around. I think it must have been drilled into me at some point that good girls just sit there quietly, as still as possible. However, I need to fidget. Even now in conference situations. I used to worry that it would be distracting for other people, or that it would look like I’m not paying attention. But now it just hurts too much not to. So far, I’ve managed to stay sitting throughout most conference panels I’ve been to, but I really appreciate efforts to normalise needing to move around. The Medievalists with Disabilities (#dismed) guidelines for example suggest making it clear that delegates can move around if they need to.

Finally, and I think we all probably do this, spacing out. I tend to get brain fog quite badly at conferences, all the moving around coupled with paying attention for long periods of time means few spoons left for general thinking, especially at the end of the day. This means that I’m happy just to sit at a table while eating and might not participate like my usual lively self in the conversation. It’s not because I’m not interested or because I don’t care, but because I just about have enough energy to concentrate on getting the food into my mouth. I like to be with people though, and still feel part of things even if I’m not particularly chatty.

So, if you’re organising a conference, look at something like the guidelines like the dismed ones, and try to incorporate some of the ideas. Some are more difficult and require more time/funding, but others are simple enough- like telling delegates if the space will be accessible beforehand and without them asking. And also be kind. Don’t stare at the person who gets up halfway through a session to stand at the back, or who’s surreptitiously eating a snack. If we can normalise these things, then conferences will become a happier space, not just for disabled people, but for everyone.

#AskStaynton: An Open Letter

Dear Staynton,

Firstly, I’d like to thank TFL Access for the wonderful Please Offer Me a Seat badge. It has quite literally changed my life. Before the badge, I didn’t feel able to ask for a seat on public transport, so I would suffer through my chronic pain in silence. Now I have the confidence to ask for a seat, and on some lucky occasions, I’m offered one by someone who spots my badge.

This is the reason for my writing to you- it seems that very few people know what to do when they see my please offer me a seat badge. You might think that the message is obvious: the person wearing this badge isn’t able to stand up very well, if you’re able, would you mind please offering them your seat. I’m incredibly grateful to all the kind people who have given up their seats for me.

I see so many tweets by other badge users saying that they haven’t got the seat they needed. I’ve experienced a lot of staring and even someone laughing at me when I asked for a seat. You can see the #pleaseoffermeaseat hashtag for my and other people’s experiences- lots of positives, but many negatives too. It’s not just me who’s having issues with people not giving up priority seats, it’s people who wear baby on board badges as well:

Embedded tweet. Text reads: ‘Transport companies need to do more to remind people in priority seats to offer them to pregnant women, the less able and the elderly. Despite wearing a Baby on Board badge, I have found nobody notices and it is quite intimidating asking a stranger to move, especially when people refuse. Felicity, London
I don’t need to tell you the reasons why people might need a please offer me a seat badge. But if you like, you can read the rest of my blog posts if you want to see how it helps me, or also the @CanceronBoard account (detailing their wonderful work and advocacy for people with cancer), @fall_laugh‘s post https://fallingandlaughingblog.com/2017/10/16/my-world/ and @lillianeboulle‘s blog pleaseoffermeaseat.com.

I feel very strongly that TFL should advertise this wonderful scheme. When the trial was running, I along with a few others asked about advertisement for the scheme, and a few posters were placed in tube stations, e.g. Euston, West Finchley and Goodge Street. (See image below). These posters were fantastic for raising public awareness about the scheme, and for telling people not to harass and deeply question those wearing a please offer me a seat badge.

 

Embedded tweet with image of a publicity poster for Please Offer Me a Seat Badge and Card.

I also heard an automated announcement on the District line in June asking people to give up their seats if they saw someone who needed one, but I’m not a regular on that line, and have never heard it anywhere else.

Almost every time I use my badge, I have to vocally ask for a seat. I’m now confident enough to do this, but I know that many badge users are not able to speak up in this way, meaning that they do not get the seat that they so desperately need. I’ve come across so many people who have asked me what the badge is about. While I’m happy to explain, I’m sad that six months after the badge was rolled out across the network, there are still Londoners who use the TFL network every day who are unaware of the scheme.

So, Staynton, I urge you to please consider an advertising campaign for the please offer me a seat badge, or indeed for priority seats in general. I feel that more awareness needs to be raised about those with invisible conditions using TFL networks, as this will make travel in London so much more accessible for people like me. The original posters were wonderful, but I’d also be happy to consult on any further campaigning that might happen in future.

Yours sincerely,

Alex

@BlueTube2016

Standing Room Only: Seating at Conferences

I arrived late to a conference panel. This is very unlike me. Normally, I’m super prepared, I’ll arrive early so I’ve got time to find the room, go to the loo and get a seat. I didn’t manage that today, as I quickly had dinner between sessions so that I wouldn’t get too hungry. I figured this was the best decision, as I can get quite dizzy if I don’t eat enough. 

When I arrived at the session, it was standing room only, and there was almost no room left in the room. I almost turned away and left then, but I really wanted to go to the session, and there was an edge of a sofa to perch on. However, a couple of people standing left, and so there was some movement in the room. By this point, there were people queuing to get into the room, and so I felt I had to relinquish my seat so that other people could get in, rather than them having to climb awkwardly past me. The session had begun by the time I arrived, and I didn’t know anyone sitting down, or I would have asked for a seat. I really missed my ‘please offer me a seat’ badge, which I’d left in London.

I ended up standing at the back of the room leaning against the wall. This was really not ideal- even if I’m leaning against something, my feet go numb after about ten minutes of standing. When I felt this happening, I managed to awkwardly get down and sit on the floor. Sitting on the floor is also not great for me, but between that and standing, it’s the lesser of two evils. I was however in a dress, and there wasn’t much space between the wall and the row of chairs in front. I was also in front of a folding table, with the mechanism digging into my back.

The panel was really great, although I probably didn’t pay as much attention as I would have liked to. There were plenty of other people sitting on the floor and standing, so clearly more people turned up than the organisers had anticipated. Nevertheless, I think that there needs to be some kind of protocol to help people with invisible disabilities get a seat when they need to.

Here’s my list of possible solutions:

  • Get there early. This is something I didn’t manage in this instance, and can’t always be guaranteed. Finding the accessible route to rooms often takes a long time, and is more circuitous than routes with stairs.
  • Pick out panels beforehand and have a personal reserved seat.  This means you have to make all your decisions enough in advance to let conference organisers know. It would also be awkward if you didn’t turn up. Perhaps most importantly, it would out you as disabled, which isn’t ideal in a conference context.
  • Priority seats. Like on the tube, for those who need to sit down. However, these might get filled, as they do on the tube, with people who more obviously need to sit down, meaning that people like me, with invisible disabilities, feel uncomfortable asking others to move. Also, if they’re all already filled, then you’re stuck.
  • Assigned helper. Someone on the conference team who always helps  you get a seat. This might be incredibly awkward, and there might not be resources for this, as the team is often busy making sure people can find the right room etc.
  • Emergency Chairs. Have a stash of emergency chairs in each building/corridor/near each room for those with invisible disabilities if there are no seats left.
  • Something like ‘Please offer me a seat’. As I said above, I really missed my please offer me a seat badge at the conference. I feel comfortable wearing mine all the time, although others might not, so it would need to be a system whereby you could reveal the badge/sticker as necessary, more like the please offer me a seat card. Perhaps something on the back of name badges or cards which could be kept in your purse/wallet.

None of these solutions is perfect, but what I think is most important is finding an answer that doesn’t require disabled people to do extra work- like always being early or having to pick their session before they arrive. For me, I think a combination of the last two- some kind of symbol and emergency chairs- would be ideal. Being able to get a seat at a conference session is an accessibility issue, and one that we need to find a solution to- any other suggestions are very welcome.

Declaring A Disability At University

@PennyUmlaut shared an article I saw retweeted by Chronically Academic today. It talks about the dread an academic feels when a student comes to discuss the accommodations they need. This is my response to that article, both as a student, and now as a teacher of students with an invisible disability.

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I went for a chat with my personal tutor in my first few weeks at university, and we talked about my ‘joint problems’. At this point, I still didn’t have the elusive diagnosis of hypermobile Ehlers Danlos Syndrome (hEDS). However, she helped me to come to the decision to consider myself disabled, and that this would enable me to get the help that I would need. I want to stress that she was entirely supportive, and that there was no pressure on me at all, but rather that she was helping me to navigate the systems that exist at university. I do have a disability, but it was difficult for me to accept that at 18.

I then had the joyful task of having a quiet chat with everyone who taught me. I needed to ask to record lectures, and explain that I’d be using voice-to-text software, which I’d just acquired, to be writing my assignments. I said that I had ‘joint problems’ as this was the best way I could think to explain it.

I really hope that I never inspired dread in any of the faculty members I approached. Had I known that those teaching me would feel this bad about having to accommodate me, I wouldn’t have felt able to ask for the accommodations I needed to complete my studies. More recently, when I explain my situation, I say that I’m happy to answer any questions if that’ll be helpful.

However, if someone had asked me what my strategies for coping were, I’m sure I’d have mumbled a bit too rather than admit my mid afternoon naps, multiple pain killers and hospital visits that I’d need throughout the years to cope. This isn’t something I’d have felt comfortable admitting to someone who’d be marking my assignments and seeing me every week.

People like me are very *very* good at pretending to be normal. We rarely show our pain or that we’re struggling, however bad it is. I might wear a splint occasionally, but few people actually seem to notice. It’s not something I’d ever talk about at university unless I’m explicitly asked.

The article describes how demanding the curriculum was. I’m sure this isn’t unusual, and I’m sure also that this seems daunting even for students who don’t have any additional needs. So, for people like me it’s doubly so. However, this made me more efficient. If I knew an assignment was due on Tuesday, I’d plan to have it done by Sunday, so that if I had a flare up, I’d still have two days grace to finish it before the deadline.

I’m not surprised that the student completed everything on time. I expect that, like me, they often pushed through whatever difficulties they were having rather than face the embarrassment of asking for help. The attitude displayed here pushes students like me to complete things to deadline. We want to seem normal, and to show that we can succeed in spite of our disabilities.

The article mentions accommodation forms. I think it’s absolutely necessary that these prepare for the worst. If I knew that something might happen to me, it went on that form. I figured it would be much easier that way around, than to have to experience something difficult like a bad flare, and then explain it to everyone relevant, and then ask for accommodations. Questions would undoubtedly be raised about why I hadn’t mentioned this in the first place.

Now as a teacher, I hope to make myself approachable to students to come to me to discuss issues. I wear my ‘please offer me a seat’ badge while teaching. So far, no-one’s talked to me about it. I’ve also never held office hours due to the nature of my teaching work, so no-one’s approached me with any issues yet. But, when, one day, someone does, I hope that I’ll be able to come to the student on their own terms. Even if a student were to come to me and also had hEDS, I’m aware that it can manifest in so many different ways that I’d make no assumptions about their experience. I might be able to make suggestions if asked, and would most likely reveal that I had the condition as well.

One final point I’d like to address is the typological difference suggested between physical and mental health issues. These are not necessarily mutually exclusive phenomena. Moreover, physical disabilities don’t have to be visible, specific or indeed permanent. Both, however, require appropriate support, whatever that might be, so that the student can continue with their studies. Physiscal disabilities vary too- people don’t have Ehlers Danlos Syndrome in the same way. I don’t use a wheelchair, but plenty of people with EDS do, and just because I don’t need one now doesn’t mean that I never will. My condition fluctuates. I am always in pain, and have been even before I started university. However, the joints this affects vary at least day to day. Sometimes I can’t brush my teeth, sometimes I can’t walk upstairs, sometimes I can do both.

I can’t possibly hope to speak for all students with disabilities with disabilities or additional needs. I can just speak to my experience, of undergraduate, masters and doctoral study with a disability and now teaching at a university.  As a teacher now, I feel that my job is to meet students with these kinds of issues absolutely on their own terms, and if I feel out of my depth, to contact disability services to learn how I can better support them. It’s not my job to decide who needs help or how to provide it.

 

Being Disabled as a Postgraduate Teaching Assistant

One of the great things about being a PhD student is getting to teach. I really enjoy it- it’s a lot of hard work, but it’s incredibly rewarding.

However, being able to physically teach has been a bit of a minefield. There was no PGTA work in my own department, so I applied elsewhere, to everything I was eligible for to try to get some teaching experience. I’ve been really lucky, and have taught students from various MA programmes, as well as undergraduates in another department and across my faculty more broadly. Normally for a job, you’d sign a contract, tick the box to declare your disability and inform HR what your access needs are.

This was the case in only one instance of my teaching career as a postgraduate, and was something separate from my PGTA work. For me, the way that it worked is that you were employed for the teaching, you did the teaching, and then you put in an expense form for the hours you’ve worked. This kind of makes sense, especially as things fluctuate quite a lot, and it means that it’s easier for departments to bring in people just for an hour or two to cover someone else. However, this means that the pre-work stage where you declare your disability is missed out.

This is massively problematic for someone like me, who has specific access requirements to be able to get tot the room where I’d be teaching. I was incredibly lucky that it has not yet been an issue- so far, all the classes have been scheduled in rooms that I’ve been able to get to.

In another instance, I taught on two different courses one term, for which I was supposed to sign contracts before I started. What with it being the summer, everyone was away either on holiday or doing their own research, and PGTA contracts were hardly at the top of anyone’s list. However, this meant that room bookings would take place before I signed my contract. This meant that in order to make sure that I can physically do the teaching work I was contracted to do, I had to inform my line managers- academics in each department- about my disability and the impact it would have on my teaching.

I’ve got used to this now, having to explain to people about what I call my ‘joint problems,’ and people smile sympathetically, and then usually forget almost immediately. I’m comfortable self-advocating like this, and it meant that I got the support I needed, but I’m sure plenty of other people would not have spoken up in this situation.

This is something that I’ve encountered time and again, meaning that I’ve had to do so much extra work just to make sure that I’d physically be able to get to the classes that I was supposed to be teaching. It has all worked out ok so far, but I worry for the future, and for the other disabled postgraduate teaching assistants who, like me, would be much more comfortable if they could declare their disability to HR rather than the academic in charge of teaching the course.