Two laps of Stewart Park today, as evidenced by my new best friend Strava. Who knew I had it in me?! Well, I know one person who knew: Alex, my awesome PT. Today she did something really cool other than coming out in the rain with me; she did a lap in a wheelchair! Now, whilst that may sound a bit strange, it’s actually brilliant. As someone with no experience of a spinal cord injury, Alex cannot understand what everyday tasks like pushing around a park are like, nor can she understand what it’s like to have to move your legs in and out of bed by hand. Whilst the second part is extreme, the first part is not, and she decided to do something about it!
As a sports therapist, Alex has a brilliant understanding of the human body and the way it works. The only problem is that I don’t use my body the way most people do, and so for her to hop in a chair and actually experience what I do is certainly above and beyond. As she says in her own post on Instagram (Peak_Potential) “The main thing I’ve learned is there’s so much more to being in a chair than just ‘Pushing is hard work’!”. Personally I really appreciate the lengths she has gone to, just to put herself in my shoes and personalise the approach to my training.
It was an interesting session today. Pushing 2 miles sounds pretty easy, but when you factor in hills, camber, mud, moss and so much more it quickly adds up to a fairly decent cardio session. We did two loops of the park and Alex was in the chair on the first. With this being her first outing in a chair she was quickly feeling the burn in a different way than she is used to, which meant a pretty easy time for me. The second loop though… well the less said about that the better. I think you could probably hear me coming before you saw me with all the puffing and panting going on. The interesting thing though was that Alex received a few comments that she still isn’t quite sure how to take. Nothing offensive of course, but a few off the cuff remarks that those of us in chairs receive on the regular. I think it was a bit of an eye opener as to the way in which people treat those of us in chairs differently. Nonetheless, I am very grateful Alex put herself out there in order to better understand my needs, and how she can tailor the work we do together more accurately.
A final point from today is that I’ve realised how much improvement I have made over the last few months. There is still a very long way to go for me to get where I want to be, but at least I know I am heading in the right direction. I’m feeling rather stressed at the moment (more on that later) but today has certainly shown me that we cannot predict the future and I am allowed to have positive hopes for what is to come.
The day is here. The time is now. I have a new wheelchair!
It’s certainly been a long time coming, and I’m not 100% convinced that it needed to be such a long time, but the end result is the same; I finally have a much more appropriate wheelchair. The ‘Argon 2’ made by the aptly named ‘Quickie’ is my new steed, and she is a beauty! Not quite to the spec I, well, expected, but I’m absolutely over the moon. Obviously I can’t remember exactly, but I thought I’d ordered it with a bit more Orange, specifically on the forks, but a little detail like that is not going to be a deal breaker especially when it would most likely mean another long wait.
As of now, I can start to live an independent life, to a much greater degree than I have previously been allowed. I can use the car by myself, without help getting in and out (or at least I’ll be able to soon), I can get around so much easier, and more importantly I can build my skills as a wheelchair user and become more confident.
I picked the chair up yesterday, which I admit was slightly unexpected. Thankfully no major adjustment was needed, and I was able to take the chair with me! Normally these handovers take place with a rep from the company and a therapist, but that would have meant waiting until the end of September for the next available appointment. After being unable to attend my last appointment, the prospect of waiting so long was simply too much, so thankfully wheelchair services managed to fit me in without the rep. As I’ve said I really wasn’t expecting to come away with a new chair, so it was a nice surprise!
So far I am really liking it, although it is a huge change. There are no armrests, the back is MUCH lower, and overall it is so much lighter. The footplate is a lot lower to the ground and the castors are much smaller, meaning that avoiding/ overcoming obstacles is quite interesting. All of this combined makes it much more nimble and maneuverable, however it does come at the cost of having to support my own form a lot more. My back is killing me, but in a good way for once, and as I use it everyday I’ll soon get used to it and feel better. . I really can’t complain even if I wanted to, as it is so much better in every way. I need to properly get to work in the gym now though, as the more I ‘Improve’ the easier I will find everything, from transfers to everyday living. I have the tools I need in my posession now, and I am very grateful for that. Now onwards and upwards!
All this time, since that fateful day a little over a year ago, I’ve had my mind focused on getting to this point. I’ve had it in my head that making it one year will big a big turning point, and everything will start to get back on track. In some respects, this has happened, and I’ll explain how below. However, there are still so many things that I have to deal with on an almost daily basis. Read on to learn and listen to me complain!
As part of a spinal cord injury there are a few complications that come along for the ride. If we were to use a car analogy, if you have any kind of spinal injury then even the base spec comes with a set of complications, designed purely for your inconvenience. I’ve spoken about these issues before, but as a quick reminder: bladder and bowel issues often mean people have to use catheters, have a specialised bowel management programme (basically a plan on which they go to the loo), and the combination of having to have a specialised plan with an uncooperative body can often lead to, let’s say, accidents. So that obviously is no fun at all. Unfortunately it is all just part of daily living with an SCI, and is the part that thankfully is usually unseen by the greater majority of the population.
We hear the term ‘invisible disability’ used a lot nowadays which I think is brilliant, but whether or not a disability is ‘visible’, it doesn’t mean that one is easier or simpler than the other. There are so many parts to any given person that go unseen, and when you have a disability you simply add to your facets. The reason I mention parts of an otherwise obvious disability is that just because someone is in a wheelchair, that isn’t necessarily an indication that the only obstacle they face is physical movement and access, as even when they can move about freely there may be difficulties to overcome such as accessing toilets, using standard tables, turning around without taking the paint off the walls… the list could go on forever.
In a very positive move, I have been offered a super exciting job, doing something I really think I can be good at and sink my teeth into. However, even the prospect of starting work is daunting for someone like me. I plan my life around medication times, management of the plumbing as I mentioned earlier, and of course I have to take into account everything from how long it takes me to get ready on a morning, the time getting in and out of a vehicle, using accessible entrances… As someone very much in the infancy of their lifelong disability, the idea of going back to work is both incredible and terrifying. How will I work my medication times when I work night shifts? How will I have time to shower and get ready when even putting on my socks takes minutes and not seconds like it would if I were still able bodied? As I said above there are so many things that go unseen with any given disability; these questions and so many more are just waiting to be answered, although how and where I will get the answers from remains a mystery for now.
One thing that really does play a part in disability (or at least in my experience) is mental health. Obviously I have talked about it a bit before, but I am going to focus a lot more on it in future; both in practice and in my writing. Something like a new job is obviously a very exciting time, but it is unbelievably stressful too, and not just for the reasons above. As well as them I have to think about silly things such as the uniform; if the trousers are going to leave me with pressure sore risks, I’ll have to speak to occupational health. What about using a desk and computer at the right height? Will I be able to navigate the building easily? I know all of these things are easily resolved and are a while away yet, but you can’t help but worry; it comes with the territory. Thankfully I do have Sarah to keep me thinking straight, but in turn I do not want to pass all of my stress onto her, as she has her own life to get back to. That said she is my rock, and I like to think I offer her at least a fraction of what she gives me in support. Like every couple we have ups and downs, good days and bad, but at the end of those days we have each other and for that I am thankful.
Well, that’s it for another one. A nice bit of news there I think, although some of you may have already known about the job as I can’t keep my mouth shut I’m that excited. Plenty more to come soon, possibly as soon as monday. Watch this space, and thanks for reading!
Before we begin, this post was meant to go up yesterday (July 29th) but quite simply I didn’t know what to say. Rather than worrying about that, Sarah Amelia and I went to my mum’s house for a party of sorts, just a little gathering with family and a few friends to commemorate the day. It was exactly what I needed; just a nice afternoon with a few drinks, a lot of laughs, and making new memories to associate with the day. My sister Ciara made me one of the most incredible gifts I’ve ever had, which is a scrapbook full of photographs and messages from friends and family. I’m not going to share that on here as it is deeply personal, but I want to say a huge thank you to Ciara and everyone who was involved.
Well, that’s it. One year to the day that my entire world changed. One year since I almost died, but didn’t. One year since I became paralysed, but managed to keep pushing forward. All in all, it’s been one hell of a year.
I don’t really have a great deal to say, well at least nothing that I’ve not said before. There have been ups and downs, plenty of both in fact, but at the end of the day I’m just happy to be alive and well enough to spend every day with the people I love. I have lost people along the way, grown distant from people I’ve known forever, and have felt let down by people I didn’t expect it from. In a polar opposite to that I’ve met some incredible people I will now consider lifelong friends, reconnected with people and bonded through our respective journeys, and realised who and what is actually important in life.
By far this was the worst thing that’s ever happened to me; let’s be honest, nobody wants to become a paraplegic at the age of 21. That said, this life I find myself living is much better than the alternative of having no life to live at all. And so, with the negativity out of the way, I’d like to go forward with this post focusing on positives.
Obviously I’ve said thank you to everyone I can as many times as I can, but if we’re going to look at positives then I need to look at the positive impact the people at the start have had on me. From the incredibly kind lady (Trisha) that was in the car behind me who stopped to help, to the firefighters immediately on scene and the ambulance crew, to the doctors and nurses that kept me alive and well enough to get me to a place I can begin my rehab… there are plenty of people who were absolutely vital in those first few days and weeks. My bosses from HM Coastguard Steve and Steve were there immediately, and I will never be able to repay them for that. My mum and Sarah were in the hospital, so A) I’m sorry and B) thank you. My dad and step-mum shaz were on holiday, so sorry for spoiling that (and your birthday, thank god you’re 50 again this year). There was an overwhelming amount of support I received, most of which I have covered in previous posts, and if I said everything this post would be far too long, so here’s just a few more people: Leanne, for organising the crowd funding that allowed us to turn what was a shell into a home we now love. The Coastguard Association for again helping us financially during the initial weeks. Jonny, Corey, Isaac, and the rest of my mates that came through to see me and keep me company playing poker. My step-dad Jon, not only for supporting my mum, but for all the comforting words and doing whatever you could to help. Debi, Eileen, Amy, Di, Caroline… there were so many staff that were either directly or indirectly involved in my care but took the time to come and see me just to check I’m okay. All of the people mentioned here, and so many more, have been instrumental in my recovery, and even though it doesn’t begin to cover it, thank you.
As part of my journey I’ve had a lot of time to reflect on my time in hospital, and there was definitely a lot to think about. That said, there were some stand out moments, and I’d like to share a few that I’ve already probably mentioned… Irene and her lovely dog Poppy coming to visit me first in HDU (as well as all my other furry friends I’ve made along the way), meeting my now very good friend Ify, Lots and lots of moments from the physio gym, once again the list is too long to write everything down. The point of this though is that although the hospital experience as a whole is not necessarily a positive thing, it’s important to remember that there is always something positive to bring away from an experience, and thankfully I had many positives. I made some great friends, developed great relationships with many of the staff, and with some of the opportunities I have had/ I am going to have I will hopefully be able to make a positive difference for future patients. Since leaving hospital I have continued to meet people (despite covid ruining everyone’s plans) and I have made so many improvements.
Although it is one year to the day of my crash, in reality it is one year since my recovery began and that is the important bit. Sarah Amelia and I have had to rebuild our lives, and this one year mark is a significant point in that, as one year ago everything changed. Not for the better by any means, but not necessarily for the worse. Life is certainly more complicated now, and lots of things are more difficult, but as our experience grows so does our knowledge of how to make life easier, and more importantly how to make it better. I have a brilliant trainer in Alex from Peak Potential, who pushes me to be the best I can in everything I do, and then pushes some more. I have my mum and dad, and of course Jon and Shaz, who are always there for me and do everything they can to help and make sure that our lives are as close to normal as possible. I have some great friends who, same as before my crash, are so accommodating and go out of their way to see us in our home so life is easier… what more could I ask for?
Well, one thing I did ask is for Sarah to marry me, to which she thankfully said yes on christmas morning. I couldn’t get by day to day without her; she is my rock when I need support, my stick when i need prodding to get moving, and the hand that sometimes very literally drags me up when I am down. Going through what we have this past year really makes you think about what, and who, is important in life. It may sound cliché, but life really is too short to sweat the small stuff. We may not have the biggest house, or the fanciest things, but we have happiness in our lives. As such, we recently decided on a date, and we are getting married next year! I think I speak on behalf of us both when I say we can’t wait to share this day with those that matter the most to us but more importantly, we can’t wait for this new chapter of our lives together.
On that note I am ending this post, and I will be back on your web browser soon with an update on some exciting things heading our way. Until then, take care folks!