Finding HopePreparing for London Film And Comic Con As A Disabled Person
Posted on October 28, 2023
So, earlier this year, I finally felt able to go to Comic Con for the first time ever after several failed attempts (this was mostly due to my own anxiety, which was then compounded by COVID and COVID anxiety). And it was amazing! I had a really, really special experience. Having spoken to them a lot, I was about as prepared as I could be (given that I’d never been before) and that really helped me enjoy the experience so I thought I’d share what I did beforehand and what I learned from the experience that will make it easier next time, whenever I choose to go. With London’s Winter Comic Con coming up, I hope that these can be useful to anyone wanting to go.
Apply for an Extra Help wristband ahead of time – The Extra Help wristband makes you quickly identifiable to the staff at the event so that they know to give you priority and move you to the front of the queues for your photo and autograph, etc. There’s an extra queue just for these wristbands at the talks and reserved guaranteed seating (although it is still first come first served). There’s a specific help desk for the Extra Help wristbands too and all of the staff were lovely and super patient even when I’m sure I was asking really obvious questions. These wristbands do require certain paperwork to get ahold of but all of that information is here.
Apply for Carers wristband – Even if you don’t need literal ‘caring for,’ having someone there to support you with whatever your particular needs are (for example, I needed someone – in this case, my Mum – there to help me keep my anxiety down, to guide me somewhere quiet if I started to get overwhelmed, and to be someone who knows what to do should I have a meltdown or should something unexpected happen) so that you can focus on the experience rather than worrying about what could go wrong and what you’d do if any number of things happened can completely change the experience. A pass doesn’t allow the carer to get photos or autographs but they can join their person in the talks and so on. (I met some members of a group of friends, some abled and some disabled, who’d organised their ticket buying to allow all of them to go for slightly less money, although that only works if members of the group aren’t interested in meeting anyone and only want to look at the stalls and go to talks with the group member they’ve partnered up with.)
Diamond passes are a good investment for seeing someone that means a lot to you – Because the only person I really, really wanted to see there was Amanda Tapping, I bought a Diamond pass because it made access to all of the Amanda-related parts of the event really easy and straightforward. The pass gave me access to the talk, the autograph, and photo, combining and reducing the price. It also improved the accessibility in that it reduced the queuing times and guaranteeing a seat. It made the whole experience less stressful, although I wouldn’t have been able to afford the luxury for more than one person.
Email beforehand if you have questions – Because I was so nervous, I emailed the organisers several times before the event to get as much information as possible. The staff were great, replying clearly and in good time. Having said that, it’s worth remembering that information does change so it’s probably best, should you need to contact them about anything going on during the actual convention, to contact them closer to the event if possible (although they obviously have to set up and so don’t reply to emails in the last few days leading up it).
The line up changes multiple times – The fact that the schedule changes so much has caused me a lot of anxiety in the past, during previous attempts to go, but now that I know that that is what happens, it doesn’t phase me as much. Knowing that the early ones are really only a basic guide and that you’re not going to be sure until the day before, or even the day of, did reduce my anxiety because I stopped panicking every time they changed it.
There are chairs but you have to search for them – I had fully expected to have to sit on the ground between my events (and at times, I did) but there were a handful of empty tables and chairs here and there around the convention space (I assume for events on different days or something like that). So, on the whole, it was a pretty comfortable experience; I could’ve coped with sitting on the floor but it was very nice not to have to. So keep an eye out because chances are, you’ll find somewhere more comfortable to sit than on the ground.
Keep the map on your phone – It’s a huge, huge space with a lot going on and it’s easy to get turned around so keeping the online map (or a picture of the map – I didn’t want to rely on the assumption that the WiFi would be good) does make it easier to navigate that space and to find things more quickly, something that’s especially helpful if you need to find a bathroom or quiet corner as quickly as possible.
An unexpected and beautiful aspect of my Comic Con experience was how many disabled people I saw and, of course, those were just the people with visible disabilities; there were surely many people there with invisible disabilities, just like me. That was so comforting. I’d been so worried about how my disabilities would affect my experience but here were all of these people with disabilities who were, presumably, having a great time. It helped to reassure me that that was possible, not just for that event but for ones in the future. There were also lots of service dogs around – one of which I spent quite a lot of time with – and that gave me a little bit more confidence about what it will be like to have one myself. I just felt very safe and welcome there (even though I’d never been there before), which is not something I often feel out in the world. So it was a really positive experience, on so many different levels.
And although I don’t know whether anyone who’s part of the organisation will actually see this, I still want to say thank you to all of the staff who were so helpful and accommodating and patient – especially when my anxiety rose and I was less able to function – because it made the experience so much better and so special: I was allowed to be myself, to be anxious, to need help. They didn’t for a single moment make me feel weird or stupid for struggling and I appreciated that more than I can possibly express since that is often the world’s default. My Mum and I emailed to express our thanks but I also want to acknowledge them publicly because I really, really appreciated it.
Here is my Instagram post from after the event…
Seeking Help For Chronic Pain (Year Two)
Posted on October 21, 2023
TW: Mentions of being suicidal.
Year two of dealing with chronic pain. Since it’s Bone and Joint Week, I thought it seemed timely to update this series, although hEDS isn’t bone related. But whatever. I needed to post this at some point and my joints hurt so this seemed as good a time as ever.
Unfortunately, very little changed during the second year. I was incredibly depressed, to the point where I was periods of being consistently suicidal, so I wasn’t capable of much. But we were also waiting for the Pain Clinic to get in touch as they’d promised to.
This post spans from April 2022 to March 2023.
OCTOBER 2022
After finally getting the referral to the NHS Hydrotherapy Department in December 2021, I tried to work that into my routine to get some exercise, strengthen my painful joints, and just improve my quality of living. It was pretty hit and miss for a while (as my post about it reflects) but around August, I found a pool that allowed me to do all of the assigned exercises and managed to work out a schedule. From that point on, I was going at least twice a week, if not more, and I could really feel the difference.
I wasn’t pain-free by any stretch of the imagination though; I was in enough pain to significantly disrupt my life at least 50% of the time (and a lot of the time it was still there, even if it wasn’t upsetting my day-to-day life). I was getting stronger, with more stability, but still with no word from the Pain Clinic on how to manage or, dear god, get rid of the pain.
Into 2023 and we still hadn’t heard anything. I was working hard at hydro and I could feel the difference – I was stronger and I enjoyed the exercise – but I was still in pain a lot of the time. We’d asked my GP to chase up the Pain Clinic but not heard anything from either of them.
World Mental Health Day 2023
Posted on October 10, 2023
If you’ve been following me for a while, you’ll know that I find awareness days, like World Mental Health Awareness Day and Mental Health Awareness Week, really hard. I find it really frustrating to watch so many people – businesses, celebrities, every man and his dog, etc – jump on the #MentalHealthAwareness bandwagon just to show that they really do care about mental health, to prove that they are socially engaged and empathetic (before reverting to their previous routine of never discussing the subject). I have absolutely no problem with people not making it their primary social cause; I do have a problem with people trying to claim social credit by talking about it for one day a year.
I also struggle with the consistently vague annual themes that many charities and organisations stand behind. This year, the World Federation for Mental Health announced that their theme for 2023 is ‘mental health is a universal right,’ to which my immediate reaction was, ‘No shit.’ What is that supposed to mean? That everyone deserves to have good mental health? That everyone should have access to mental health support? Isn’t this blatantly obvious? The problem is that we’re stuck with outdated medical education, out of touch care providers, no support services, and no money to fix any of it. So how does this vague statement help? What does it change? We need more. We need better. We need support and education and resources. We need a government that cares about the people it serves, that cares about the wellbeing of the people it serves. But instead, we have a group of entitled, morally-bankrupt, evil narcissists who only care about money and power.
I’m sick of feeling so angry and I’m sick of feeling so powerless. I doubt there’s anything that can truly change that, aside from massive institutional change. But it doesn’t seem like that’s coming from the government any time soon so I’m trying to channel my focus and my energy and my feelings into doing what I can as an individual. The proceeds from my single, ‘Invisible,’ go to YoungMinds of course but that’s in place and I want to do more. I want to do everything I can. So, this year, I decided to raise money for Mind (Charity Number: 219830) by swimming 5km. Because of my hEDS, I knew I wasn’t going to be able to swim more than a kilometre at a time without potentially aggravating my chronic fatigue and chronic pain so I planned to do the 5km over a series of nights, completing the 5km in time for World Mental Health Day on the 10th October. There’s a nagging voice in my head that keeps snarkily pointing out that I should’ve been doing this for years but I know logically that I couldn’t even have done it last year because of both my physical and mental health. So I’m trying not to beat myself up for not doing it sooner. I’m doing it now.
I really had no idea what to expect in terms of raising so I set it at £150. That seemed doable since most of my friends are still struggling financially post university and we are all in a cost of living crisis. While this also affects the more financially established people in my life, I knew that there were people who were more able to help me achieve this. That, I think, is a big part of why I didn’t set a super ambitious target; the cost of living crisis is hitting everyone hard (apart from the incredibly wealthy Tory politicians, it seems) so I felt that raising any money at all was an achievement; I was deeply appreciative of every donation, whatever the amount. I figured out the details and set up my JustGiving page:
“For World Mental Health Day 2023, I will be swimming 5km in aid of Mind (charity number: 219830), a charity that supports those struggling with their mental health. As a person with Ehlers-Danlos Syndrome who suffers from chronic pain and chronic fatigue, I will be swimming this distance over a week in order to avoid worsening these conditions. It has taken me over a year to reach this point, where I am physically fit and healthy enough to do this, and I want to celebrate this and honour World Mental Health Day by challenging myself with this swim and raising money to support a charity that helps those who are struggling with issues that I have struggled with myself.
I know that times are really tough and that we are all affected by the cost of living crisis but even a few pounds can make a difference. If you can’t afford to donate, please help me to reach more people by sharing this page on your social media.
Thank you for reading this post and for whatever help you can manage. I truly and deeply appreciate it.“
And then it was time to swim the thing!
SWIM 1
The first swim was at the longer, lane swimming pool that I go to, which meant swimming fifty lengths to achieve the first of the five kilometres. I had, in typical fashion, slipped off an uneven curb earlier in the day (right before my first ever sponsored 5k ever, of course); fortunately I was fine, if a little sore, because I wasn’t changing the plan for anything. I’d swum the distance a few times already and found it a challenge but a doable one; I expected the same for each of the five nights. But it was surprisingly smooth-going. I was tired at the end, my muscles a bit shaky, but I was excited and energised by it; I couldn’t wait to do the rest of them.
SWIM 2
For the second swim, I was in the smaller pool, the one that’s more suited to and where I usually do my hydrotherapy exercises. It’s short – only 8.5m – so the amount of times you have to turn in order to swim a kilometre can get a bit tedious but it’s a beautiful little pool. This kilometre was harder. Given that it was the second of two nights swimming a kilometre, I was tired before I started and my arm and leg were actually more painful than the night before, presumably because I hadn’t been able to rest them post fall. So it was a bit of a struggle but I made it! Two down, three to go!
SWIM 3
I had a night off and then I was swimming again, another kilometre in the small pool. Having had a break and some time to rest my sore arm and leg, I felt better and stronger in the face of the swim and, unsurprisingly, it was easier than both I’d done so far. That said, I was exhausted by the time I was done and fell asleep on the sofa when I got home. My body definitely isn’t used to this. But it was very exciting to have passed the halfway point! And I was at almost £500 with my fundraising when I hadn’t even expected to break £200!
SWIM 4
For the fourth of the five kilometres, I was back in the long pool. Despite having a few days off, this one felt really hard: it wasn’t that the lengths felt longer but more that my arms and legs were heavy and tired and it took more effort to pull myself through the water. I think I got tired faster too. But I managed it, even if only just in time before I had to get out of the pool. Four kilometres in a week! Even though I was exhausted with another kilometre to go, I still felt energised and excited about going to the pool. And so motivated to finish the 5k.
SWIM 5
Because I’m me and apparently really can’t go a week without falling over, tripping on something, or colliding with a door frame, I managed to trip in the street on my way back from the pool the night before (because I was so tired, I think). I twisted my ankle and landed on my knee and although I hadn’t done any serious damage – thank goodness – I did go into the last kilometre feeling sore and a little wobbly. But I was so excited to do it, both to complete the challenge and fulfil the promise I’d made to Mind and to all of the wonderful people who’d donated. I was so proud to be earning that money, the total having reached £500 that morning!
1km later and I’d done it! 5km! It felt so good. It hadn’t felt as hard as the night before either, maybe because I was back in the groove, maybe because I was so close to achieving the goal and was therefore more motivated and noticed my fatigue less. Whatever, it was done and I didn’t feel too exhausted to actually get out of the pool. The lifeguard was really nice about it when we realised we confused the time of our slot and even donated before we left!
By the end of the day, with the swim completed, the total donation sat at £510. I was very, very proud of that, having never thought I’d reach such a number. And I was really proud of myself: I’d done it. I’d completed the challenge I’d set for myself. I’d swum 5km when, just several months ago, I wouldn’t have been able to swim half that. It’s a big milestone in terms of my fitness.
It’s been a really positive experience, even if – at times – I was tired or sore or anxious that I wouldn’t raise the money. So much work has gone into the week, into these five kilometres; it’s taken so much time and effort to get physically healthy and fit enough (plus in a healthy enough mental state) to do this. I’m really, really proud of myself for getting to this point and I’m really, really proud of completing the 5k; I can’t think of a better way to celebrate all of that than by challenging myself with this swim and raising money to support a charity as important as Mind.
There is still time to donate – the page is here – but at the time of posting this blog, the total raised is £620. That is so incredible to me and I’m so moved by the generosity of human beings and their desire to support each other. Thank you so much to everyone who has donated and to those who weren’t able to but shared the link, helping this fundraiser to reach a wider audience. While I’m sure there are many, many things that this money can go towards, these are some of the ways that the money we’ve raised together will help people…
As I said, I’ve been struggling with awareness days like this one for the last several years, feeling powerless and frustrated. But this year has been different and that’s because of this fundraising challenge. Not only am I proud of completing the physical challenge and blowing the fundraising target out of the water (that pun was originally accidental but it’s too funny to me to take out), I feel like I’ve made a difference. It might be a small one in the grand scheme of things but it’ll be no small thing to the individual(s) Mind is able to help because of this donation. So, with that in mind, Happy World Health Awareness Day. We made a difference.
Finding Hope 