Dan in his wheelchair, tipped on it's side
Ataxia and us

The wobbles and hurdles of love with ataxia.

The good, the bad, and the ugly…

Dan and I met in April this year, and we’ve already made a lot of amazing memories. When I really didn’t expect to, I fell completely in love. As much as I’d like to keep the blog exclusively positive though, I wouldn’t be being honest in my aim of raising awareness of living with a disability and Friedreich’s Ataxia if I did so. I also feel strongly about breaking down barriers and stigmas attached to mental health; that’s why honesty is one of the most important parts of this blog.

Loads of us select only the most attractive photos of ourselves to post online, and give an edited snippet of our best-bits, the highlights that we want everyone to see. We unintentionally put a huge amount of pressure on each other to be happier, better looking and more successful. We often compare ourselves to a highly stylised and unrealistic version of someone else. Most of us have insecurities, worries, down days- we just hide them. Whilst I want most of my blog to be positive and encouraging, I don’t want to provide a false impression that everything is always easy and wonderful for us.

We want to help other people, and to do so, I realise that we need to share the good, the bad, and the ugly! So, whilst all of my blogs so far have been mostly positive, here’s a run-down of some of the difficulties we’ve faced over the last eight months…

Falling head over wheels, literally… The trips and accidents.

The falls and accidents have been one of the most difficult aspects. A few months in, Dan had his first fall that I was with him for- it was in the bathroom in the middle of the night. It’s an en-suite, so he was only a few meters away and I heard the most sickening thud. Like with any fall he has, an automatic reflex kicked in and I was in the bathroom within seconds. He’d winded himself and couldn’t speak and was gasping to catch his breath. He was sat on the cold, tiled bathroom floor in a lot of pain, angry and eyes welling up, and I felt so helpless. In a small bathroom, there’s a lot of hard things to hit your head on, especially if you’re as tall as Dan- it’s a long way to fall! I felt really shaken up that first time, as I realised how badly he could injure himself falling. Since then, there’s been a fair few falls. Mostly, they’ve been at home, but Dan’s also tipped his wheelchair a couple of times when out and about. Some of the accidents make us laugh, some make us cry.

Dan with his wheelchair tipped on it's side.
On a recent trip to Sutton Park, Dan tipped his wheelchair. He didn’t hurt himself and told me to take a photo!

An incident that happened at the beginning of autumn was particularly horrible. Dan and I needed some bits and bobs so decided to pop to the shop at the end of the road; it’s only a couple of minutes’ walk away (if that). A quick, straight-forward trip to get some essentials. What could go wrong? Dan’s shoulder had been aching badly for a few days, and to give it a rest, he asked if I’d push him there. Off we went, happily chatting away.

We reached the end of the road, and just had to get over the busy cross-roads and we’d be at the shop. When the lights turned red and all the traffic stopped, I started pushing Dan and headed down the dropped kerb. It’s fair to say I made quite a meal out of it… The pavement slopes into the road, and is steeper than it looks (honestly!). As I pushed Dan, the footplate of his wheelchair caught the road- effectively bottoming out. His chair already had a fair bit of trajectory, and wanted to carry on going forwards. The result: the wheelchair tipped forwards, catapulting Dan out of it, and launching him into the road. I can only liken it to when I empty a wheelbarrow of crap onto a muck heap…

To make things worse, I couldn’t have picked a busier time to deposit Dan into the road. There was loads of cars and a bus full of passengers stopped at the lights. As Dan was on the floor, with an array of expletives exploding from his mouth, people got out of their cars and rushed to help. He’d grazed his knees, his elbows and his hands (and I don’t think it helped his bad shoulder…). A few kind people helped to get Dan back into his wheelchair and picked up his phone and wallet off the road. We thanked them and scurried off to the shop. Dan brushed himself off and said he was ok despite the few cuts and developing bruises. He finds it difficult asking for help, especially if it’s from strangers. He hates drawing attention to himself, appearing vulnerable, and like anyone, he’s not a fan of hurting himself. Oh. My God. I felt an enormous amount of mortifying guilt.

Out of the sight of anyone who witnessed the accident, I burst into tears. I was supposed to have been helping, and had done the exact opposite. I couldn’t believe I’d put him in such a horrible situation, and he was hurt because of me. Nobody wants to see someone they love in pain, or shaken up by a scary incident- and it’s a LOT worse if you’ve caused it yourself. Attractively, (and probably being equally as embarrassing as what had just happened) I sobbed my way around the shop before we went home. Dan made me push him on the way back- he said I needed to treat it as if I’d just fallen off a horse- get straight back to it, so as not to lose my confidence!

We got home, Dan recovering from the shock, and me trying to stop bloody weeping. Dan was covered in dirt and sporting a few cuts and bruises, and I was all flustered with mascara all down my face; we didn’t look like we’d only popped out for some bread and milk. As I cleaned up his cuts, he told me loads of his friends have done the same thing too. He recalled a few similar stories, and after a while, we both started to see the funny side. I told him for Christmas, I was getting him a seatbelt and a helmet.

The accessibility defeats.

Dan and I both like to be busy, exploring new places and trying new things. As my last blog explained, being in a wheelchair comes with a lot of accessibility considerations. Often just finding an accessible toilet is difficult, so getting out and about to unknown places often throws up some challenges. When we were in London in September, the pub we were eating in didn’t have an accessible toilet; it look us over half an hour of going around different places before we found a toilet suitable for a wheelchair user. Read about that by clicking here.

Another example happened on our wonderful first holiday together- we went to Snowdonia in Wales. I wanted to visit the impressive Aber Falls and Dan was keen to as well. I’d done LOADS of research, and found plenty of information telling me that the walk to the waterfalls was fairly short, accessible and suitable for wheelchair users. We drove thirty-five minutes from our self-catering cottage to the car park. It was a promising first-impression. There was a decent accessible toilet, accessible parking spaces and picnic benches that were adapted to be suitable for wheelchair users.

Dan on the Aber Falls route before it got too steep.
On the Aber Falls route before it became too steep.

We followed the ‘accessible route’ signs over a bridge and along a stream. We managed to get about half way along the route when it started getting a lot steeper. Dan was using his electric attachment for his wheelchair, and had his off-road wheels on his chair, but even so, he couldn’t make it. The path was too steep and the gravel surface was too loose. The chair couldn’t get enough traction and the wheels were just spinning fruitlessly. I’d already pushed him up a few of the shorter hills along the route and had run out of steam by the time we got to this longer incline.

We had to admit defeat. Dan was so annoyed. He knew how excited I was to visit some waterfalls on our break. I told him it really didn’t matter though- we’d seen some gorgeous scenery anyway and had still had a great time. It didn’t help… Dan was already worked up about it and said he hated feeling like he was holding me back. I found it so upsetting that he felt that way. It was difficult trying to lift the mood back up for a while afterwards; Dan was seriously frustrated.

We’ve decided to go back and try again in the future. We’ve had some tips, and it seems that with a bit more weight over the front wheel of Dan’s electric attachment (and a less slippery and wet day), we should manage to get all the way to the foot of the waterfalls.

Me on the Aber Falls route. There's a forest and mountains behind me. I'm stood on a grassy, rocky area.

PTSD: Dan learning to date someone who is a flight-risk!

As well as the physical and practical obstacles that our relationship and lives face, there are a few psychological ones too. I have PTSD (post-traumatic stress disorder), and when Dan and I met, there were a few issues that reared their ugly heads. I didn’t want to tell him about my PTSD straight away, but Dan is intuitive; by the third date, he’d read my guarded body language and presumed that it was a direct reflection on how I felt about him. I was usually ok until he sat a bit too close, or touched me in a way that I didn’t like. I can totally see how he interpreted it all as me not being interested in him. I’m glad that Dan approached me about appearing a bit ‘stand-offish’ because it opened the conversation and allowed me to set the record straight. I was fully prepared for him to do a runner (or a wheeler, as he put it), and I wouldn’t have blamed him.

But, thankfully, Dan was enjoying my company and was very understanding and patient. We have loads in common and got on incredibly well right from our first date. We clicked immediately. As we got to know each other over the next few weeks, Dan had to learn what triggered me. It was hard explaining to him that I fancied him when all the signals I was giving probably said otherwise. If our personalities hadn’t gelled so quickly, I’m certain that my PTSD would’ve prevented things from developing, despite the fact we were both attracted to each other.

Falling in love with someone who has a degenerative condition & learning about Friedreich’s Ataxia.

Until I met Dan, I’d never even heard of Friedreich’s Ataxia. Before our first date, he messaged me with a brief description. Here’s how the conversation started…

Message from Dan: so do you wanna ask me anything about the wheelchair situation before you fall in love with me?
Message from me: Ah haha well someone being in a wheelchair wouldn't affect my ability to fall in love or influence my opinions! But yeah i can ask...! So what is the situation?
Dan: I have a rare (ish) genetic condition called Friedreich's ataxia that effects balance and coordination. I can still stand with stuff to hold on to. I was diagnosed at 19 and was walking til about 23/24 before it got too dangerous and I decided a chair would give me more of a life

That was the most we talked about Dan’s condition for a while. We touched on the subject on our first couple of dates, but didn’t go into much detail. One day, a couple of months into dating Dan, I decided to do a bit of research into FA. At first, I didn’t feel like I needed to know anything more than I already did; we were having a great time together and I didn’t feel that Dan being in a wheelchair was having any effect on our dating. But, when I realised I was falling for him I thought I should probably have a better understanding of his condition. That’s when I read that FA is degenerative, and I didn’t like the statistics that were in front of me.

A week or so later, I plucked up the courage to approach Dan about it. I didn’t have any expectations for the conversation, and didn’t even know what I wanted to gain from it. Dan told me that by doing that quick internet search, I already knew more about FA than he did. I was confused… He went on to say that he’d never wanted to know about his future with the condition. He’d never asked his consultants about the future, and had never done much research into it. Although he knew that FA is degenerative, he knew no details about how the condition progresses and over what sort of timescale. He said he had no desire to know that stuff. He told me he just focused on living his life as best he could in the short term, by only knowing the bare minimum that he needed to. I was really taken aback. Especially by the next turn that the conversation took…

Dan then asked me what I’d found out. He asked me the biggest question of all… what the life expectancy is. I refused to answer. I told him that he’d come this far without knowing and that he had his reasons for dealing with his diagnosis in the way he did. He said meeting me had given him a reason to think about his future, and that he’d rather hear that sort of stuff from me than from a consultant in a hospital. I still refused to answer, telling him it wasn’t my place. I said if he still wanted to know the next morning, he could talk to me about it then. I couldn’t believe he didn’t know this stuff after living with the condition for nearly ten years.

Dan could tell that I didn’t like what I’d found out about Friedreich’s Ataxia. The tone that I started the conversation with, and my refusal to be the person who told him that information, made it clear that I hadn’t read really positive things. We had a really long, emotional conversation that night. I mainly just felt overwhelmed. They say you ‘just know’ when you meet ‘the one’. I didn’t believe that until I met Dan. I felt a sense of unfairness; I’d fallen in love with an absolutely incredible man, but I had to come to terms with the fact that he had a rare, degenerative neurological condition. But, I told Dan that it’d made me realise how much I love him. Finding out that sort of thing a few months into dating could’ve been too much to deal with. It could’ve made my barriers come up. It could’ve made me think that I couldn’t put myself through it. Instead, it made me want to spend all my time with Dan. It made me want to throw myself into our developing relationship with all I had. I decided to make the most of every minute I have with him. That was the best decision I could’ve made.




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