Rolling for the Trust

We have all had a bad time in lockdown. It’s been long and difficult, especially lockdown 3, and because of that we have all had way more than our fair share of doom and gloom. Whether in the news, on social media, or just talking, there has not been much of a positive atmosphere lately. That is why, when I was offered the chance to do something positive, I (figuratively) jumped at the chance!

THe PFC trust is a charitable organisation dedicated to improving the lives of people around Hartlepool. At the start of this year, they launched a new campaign – U change Lives 25. The aim of this campaign is to raise funds to buy a caravan, which in turn will provide the young carers of Hartlepool with a well deserved holiday. Did you know, on average a carer spends 25 hours a week caring for a loved one? As someone who has been on the receiving end of that type of care, I understand the importance of recognising the incredible work that carers do. Sarah was literally a lifeline for me and whilst I am independent now, I would never have reached this point without her help and support.

A typical carer spends 25 hours a week caring for loved ones. Taking this statistic as a starting point, The PFC Trust has launched a new fundraising initiative for 2021 based around the number 25. Initially, we are aiming to raise £50,000 to fund a new caravan for Hartlepool Carers, with additional sums being used as part of the Trust’s COVID-19 response.

The PFC Trust

If nothing else, this campaign is hoping to shine a light on the little-acknowledged world of young carers, and how much we as a society take for granted just because we cannot see what’s going on behind closed doors. Oftentimes we, myself included, think of a smart uniform and a big building when we think of carers, but this is often not the case. A lot of the time it is family members who step up and look after loved ones, which in itself is a huge undertaking – imagine coupling that with going to school/ college etc, looking after siblings… These young carers are truly selfless and this campaign will really do good to show appreciation for the work they do.

If you want to know more about The PFC Trust, you can find them here: https://www.thepfctrust.org/. They do incredible work supporting the local community in Hartlepool by bringing about the type of support that is often overlooked – they provide vouchers for things like utilities and broadband to those who need them, as well as providing donations, grants and scholarships to organisations and individuals. The charity has been around since July 2019, the same amount of time that I have been injured, and one quick glance at their work demonstrates just how dedicated they are.

So, with all of that said, what will I be doing? Well, I should say ‘What will WE be doing?’ as Sarah and Amelia will be joining me. In answer to that, I’m going to do what I do best, push a wheelchair – more specifically mine. Over the course of 25 days I will push 25KM, which with a bit of calculation works out at 1KM a day. That may not sound a lot, but it’s a lot more than I am used to pushing regularly, and I will have to fit it in around work. Now obviously there are some sensible terms I am imposing such as I don’t want to be out in adverse weather as it takes me hours to dry off and warm up, so the 25 days may unfortunately not be quite consecutive; that said rest assured I will complete this challenge. If you wish to donate then my Just GIving page which links directly to The PFC Trust is https://www.justgiving.com/fundraising/sam-watson26. Alternatively I can take cash in, although I would prefer to avoid this where possible. Obviously the times we are living in dictate that we should not leave home without good reason, which is another factor I have used in deciding my challenge – I can leave my house and not have to drive, as this is simultaneously my daily exercise allowance. The COVID thing is also the reason I am avoiding cash wherever possible, to try and reduce my interactions.

So there it is, my challenge for the next month or so. I feel that this could not have come along at a better time – the 11th of February marked 1 whole year since I was discharged from hospital. I did have a whole post ready about the trials and tribulations we have all faced, and how this wasn’t the year I had expected, but it has been that way for us all. I feel that this is a much better way of celebrating my release, and it may hopefully bring some benefit to those who deserve it most too.

Working life: the sequel

Once upon a time, there was a man who could ride a motorcycle. That man was not me. That man could stay working during the pandemic! I cannot. Well, not in my normal way.

I had a call this morning from one of my lovely supervisors, and together they have managed to sort things out for me to be able to work from home. I won’t be doing my usual role, as that can only be performed in the office, but this is a part of it that I enjoy and I’m glad I’ll still be able to contribute to the team in any way at all. I’m still frustrated at not being able to carry on as normal, but I have accepted it a bit more now, and I certainly understand why.

This virus spares nobody. It doesn’t pick and choose, it just keeps going. There is no sense to it, no pattern or plan. When I think of it in general, the first word that springs to mind is scary. Plain and simple. I am not afraid to admit that it scares me. The thing that scares me more, though, is how relaxed other people are. This time last year, we as a nation were blissfully unaware of what was to come. There was nothing but a small news article here and there, talking about a new strain of flu that was making people ill in Asia. Now tough, we have all seen the effects of it far too much. We’ve heard the daily briefings, we’ve seen the graphs in newspapers, we’ve felt it when it’s come too close for comfort. Yet still, there are people blatantly flaunting the rules. All over instagram, facebook, twitter… take your pick of social media. Why is it that people don’t care any more? Is it that this has been going on so long that it’s classed as normal? Is it that people feel like the rules don’t apply to them? Or is it that they just don’t care?

People all over this planet have been affected by this virus. There have been many different reactions, mostly positive. From following the rules, clapping for carers, using the app, this country has shown more than ever that in a time of crisis we can come together. Now though, it feels as though that unity has gone, and for what? This is not about reclaiming freedom. This is not about living life normally. This is about saving the lives of others, particularly those who are classed as Clinically Extremely Vulnerable. People like me.

If we can hold it together for a while longer, just until this vaccine rollout gets to a point where we’re safe, then we will make life a whole lot easier for everyone. Here’s hoping that we can manage that long.

Hello?! Anyone still there?

Belated Christmas Wishes and an early happy new year! I am still alive and not kicking, just had a mountain on my mind and it’s not been in me to start writing again until now. I hope everyone had a lovely Christmas, despite everything going awry. Hopefully one of these days we will begin to see good news on the tv that we are on the way out of this crisis. This year has been a hard one for a lot of people for a lot of reasons, and I think we will all be glad to see the back of it.

So, where have I been? Well. Between my new job, adjusting to a new shift pattern, planning a wedding and dealing with the restrictions of Covid, it’s been a bit hectic. The job has far and away been the biggest thing to try and process. There has been a huge amount to learn, and with my poor memory that has meant a lot of studying and revising. Thankfully my tutors were fantastic and got me to the point where I can keep my head above water. I love my job, and every shift brings lots of new challenges and things to learn, but it’s all good and I’m happy with what’s going on.

I completely underestimated the toll that 12 hour days and nights would take. The shifts themselves are fine, but the time between them is seriously cut by my specific conditions. What I mean is that where others can walk out, go home and go to bed, all of that takes me much longer. Getting my chair in and out of the car, changing to my shower chair, even getting dressed all takes much longer than it would should I be able to walk. That’s not a sob story looking for sympathy, it’s just a fact. It all adds up, which means by the time I come off a night shift into my first day off, I’m completely wiped. I’m sure it will get better as I continue to get used to it.

Christmas was a lovely time, it worked really well as my days off meant that I was due to go back in Boxing Day but managed to get a holiday in and go back on the 27th. Amelia had great fun all through December with her elf who most certainly was not on a shelf. Between building a tin can drum kit and wrapping the Christmas tree, they certainly caused mischief. The big day itself was fantastic; Sarah cooked us a beautiful dinner, and we were all spoilt rotten (me and Amelia were definitely the winners there). Sarah wanted a puppy and was not amused when she unwrapped a stuffed one, so watch this space for when I simply relent and let her get one.

Other than the above, there’s not a great deal to report! We’re all feeling the effects of the middle of winter coupled with the latest lockdown, but that deserves a post all to itself.

Working wonders

Diving back into the world of work was never going to be easy. I’ve had so long off that going back is not only a huge change mentally, I have to consider the physical side too. Between forgetting my meds and sitting still watching powerpoints in training for too long, the physical bit has so far not gone so well… but never mind. I’m loving being back in work, and I’m enjoying overcoming the challenges it brings.

I’ve always said I’ll never work in an office environment, but clearly the situation I find myself in doesn’t really lend itself to physical/ manual labour, and therefore I’ve found myself a bit limited. That said, the job I’ve got is (so far) extremely interesting, valuable, and rewarding. For those wondering I am being intentionally vague, as due to the nature of my job I don’t really want to name it, but suffice to say I’m interested in my work; it’s not quite where I would ever have imagined I’d be, but it isn’t bad by any means.

As well as work, I’ve been carrying on pushing and making progress in the gym. I’m by no means where I aim to be yet (still a big lad) but I’m trying. It’s been hard with work and the tiredness both pushing me to say “sod it, not tonight” but so far I’ve resisted temptation. Alex has been great in this department (as always) and if you follow her page, you’ll have seen that she’s got me up in the standing frame again. That’s not been easy, but it’s great to be vertical for a little while. The health benefits are incredible too, so please go check it out if you haven’t already! Look for Peak Potential on Facebook!

It is going to get a bit easier, as in the next few weeks I’ll be changing from Monday to Friday, 9-5 to shifts of 4 on 4 off. The days I’m on will be hard, but it will give me more chance to work out during the week, and more chance to see that little light in the sky called the Sun. More importantly, it will give me the opportunity to have a really good work/life balance. As much as I love my work, family and friends are the reason I have such a good life, and so I need to maintain that good balance.

Overall life has been absolutely hectic lately, hence the lack of posting, but now I’m hoping to get back to it on a more regular basis. I’ve had a few really interesting days at work, I’ve had the opportunity to visit some really interesting places and learn a lot. I’ve also got some really exciting things coming up off the back of my hospital board meeting, so watch this space for more info hopefully very soon!

On a final quick note, as we enter a new lockdown scenario, I want to take the time to remind everyone of the community spirit we all found in the first wave. Check in on neighbours who have nobody to help them; keep in touch with family and friends who are struggling; and look after yourselves. No two people have the same experiences day to day, and everyone helping each other can really change someone’s life for the better. Take care all!

Late to the party

Over the weekend, we had a very important day to focus on a very big issue; world mental health day. Not something often talked about until recently, mental health is a truly important topic and we all owe it to ourselves to take it seriously.

Having talked about my hallucinations in ITU previously I don’t want to flog a dead horse, but even now I still get moments where I have to take a second to ground myself. There’s times where I panic, or forget reality. But that’s not a bad thing! These things happen, we all have bad days, and we all have our ways of coping.

I’m keeping this very short for a reason; there are many people better qualified than me to talk about this subject. If anyone is struggling, please reach out. My inbox is open, or you can talk to family and friends. There are even specialty helplines and web chats for this type of thing! Don’t suffer in silence!

Reaching my Peak Potential!

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.

The smiles were absolutely not this bright after the second lap!

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.

Wheel life

Have I used this title before?! Who knows. Oh well, I like it. So, one of the big issues with being in a wheelchair is that it can lead to a lack of independence. Not necessarily through a lack of trying, but through pure difficulty. One of the things I’ve found hardest is being able to use my car independently, as so far I’ve required someone at either end to get my chair in and out of the boot. But no longer! From this moment on, I am free!

Yeah, that sounds dramatic, sorry. But I’m happy either way. I now have the ability to go where I want and do what I want whenever I want; which is a complete novelty to me at the present time. I can go from one set of wheels to another, and back again, completely on my own. Obviously it’s still more practical to have someone at either end place my chair in the boot, however there is something reassuring about having it available when driving alone. It’s something that has evaded me thus far for a number of reasons, and in an attempt to be educational rather than satirical for once I’ll go into detail here.

Firstly, getting something the size of a wheelchair into a car is never going to be easy. There are surprisingly few parts, and over the last few decades the technology used in wheelchairs has advanced dramatically and has made getting a chair in and out of a vehicle easier, but by no means is it easy. You take the cushion off, fold the back down, take the wheels off, then lift the frame of the chair in. Sounds simple, but requires a certain finesse that has evaded me until now.

Secondly, storing a few lumps of metal in a place they are not designed to go is, unsurprisingly, also slightly difficult. My way involves putting the wheels in the rear near side footwell, my cushion and backpack on the seat behind the driver, and the actual frame of the chair on the passenger seat. My car is incredible, but the one thing it lacks is electrically movable seats, and so I cannot move my seat back to make this process easier as I cannot move it forward again. Then we get to the problem of securing all of these pieces, as if I were to be involved in any kind of incident, or take a corner too fast, or hit the brakes hard, it’s bye bye windscreen and wheelchair.

The third and final main reason I find it difficult is the reassembly at the other end. It’s the same as getting it in the car just reversed, but usually getting out is harder as I have driven from home to somewhere that isn’t as level or open. And it’s normally raining.

Putting the chair in and out is a very good time for maintenance. Here you can see my off-road wheels getting a healthy dose of air!

Despite all of this, many people (myself now included) manage to live independent lives in regards to motoring, and being independent is absolutely key in this life. I can pop to the shops, go see friends, pick my daughter up from school… the possibilities are endless! I’m super happy now, and I can tick another thing off the list of issues to deal with as a new paraplegic.

Mission: Complete

The day is here. The time is now. I have a new wheelchair!

Does my bum look big in this?

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!

VW Passat – the first weeks

So, I am once again on the roads, albeit in a safer way as I’m back on four wheels. On top of those wheels is sat a grey VW Passat Estate, which just so happens to be the topic of choice today!

Starting right at the beginning, it’s a 1.6 Diesel with 120bhp, meaning it’s fast enough and plenty of grunt to get moving, but by no means will I be racing it. Much. The car choice stemmed from lack of choice really; I obviously wanted the ford focus estate which ended up being a no go due to production and availability issues, which was disappointing but hey ho. Having looked around, there were only a few options that met my needs: family size, estate style, and under 25 friendly on the motability scheme (basically low insurance group and 120bhp). When we looked there were very few cars that met this criteria other than the ford, and so we had a look at them all. Unfortunately they all came with a caveat; too small, plug in hybrid, really awkward transferring in and out of… when Sarah suggested looking at the VW, I was skeptical but clinging to hope. Unbelievably it was perfect. I didn’t even try getting into it, as when I rolled up it just felt right. The model we were looking at was the top spec, however the sales rep went through everything that was different, and it made no difference. That was the car for us!

Obviously I drive a little differently now, by which I mean I use hand controls. The car itself is otherwise unchanged, meaning anyone can drive it that is named on the insurance. I’m going to explain more about the car and my controls, but first I’d like to explain how it’s possible for me to access it. The Motability scheme is something akin to a hire agreement, whereby people who meet the criteria can exchange their money for a car. The money itself comes from a type of benefit known as PIP, or personal independence payment, which in turn has two elements there is the daily living element and the mobility element. You can be given a higher or lower award for each, and only if you have the higher element of mobility can you access the Motability scheme. This may sound exclusive, but it’s designed that those who really need it most can exchange some or all of their award money and have a suitable vehicle for their needs. By some or all, I mean that some cars only cost some of the award money, whereas bigger and better costs more. The thing is, the scheme includes everything but fuel. Insurance, tax where applicable, servicing, breakdown assistance; it’s all included, and makes having a vehicle that’s suitable a realistic prospect. Woohoo!

So, more about my actual car. Obviously my legs don’t work, and so a manual is out of the question. That just leaves the problem of making it go and making it stop; easy! I have a mechanical arm linked to the brake pedal, and so when I push it down, the car slows and stops. Behind this arm is a trigger, which is my accelerator, and the car takes care of the gears. Sorted. I even have a few added extras, just to make my life easier. On a control unit attached to the brake arm I have buttons for indicators, headlights, main beams, and the horn. A steering ball and a plate to stop my feet accidentally touching the pedals top it all off. The car itself is absolutely lovely, lots of mod cons and a ‘business class’ feel. Full leather seats which are bucketed help me get a really secure seating position, whilst 360 degree sensors ensure I keep well clear of any accidental meetings of metal and wall. Auto hold has quickly become a firm favourite with me; no more applying the handbrake at lights or on hills, the car does it all! The boot can only be described as cavernous, and there is plenty of room both in the front and back for passengers and ‘stuff’.

My view of the cockpit. Steering ball on the left, hand controls on the right. I can control cruise control and assistant systems from the wheel which really helps.
A better look at the actual hand control unit. The leather on the end of the arm is where I hold, and push towards the dash to brake. The small pole behind is the trigger accelerator.
The blanking plate is fixed in place by wing nuts, and stops my feet touching the pedals and activating or blocking them. It’s easily removed for Sarah to use the pedals as normal.

I have to say I’m loving driving again; it’s pure freedom. Being able to drive is much more than a right of passage at 17, it’s an enjoyable pastime that has so many practical applications. Thankfully, with the right adaptations, even people in my position can make use of our four wheeled friends!

How to Passat the time

Well, a lot has happened since my last post, where I introduced my triride. I was due to have an appointment at the hospital to pick up my new wheelchair, which fell through due to me getting an infection. The infection gave me a high temp, which led to me needing a covid test, and therefore I couldn’t make the appointment. Oh well! I’m desperate for the new chair, but I’ve been waiting a long time now so a few more weeks shouldn’t kill me. The covid test wasn’t as bad as I expected either – but more on that later.

If you have eagle eyes, you may have spotted a little something in the title of this post, something akin to a car model name… no, it’s not a spelling mistake, just a terrible pun (as standard). This is because, at long last I am finally a motorist again! 2/3 weeks ago Sarah and I visited a VW showroom in Middlesbrough, and on Wednesday we picked up a stunning VW Passat estate, complete with all necessary hand controls and adaptations that make it viable for me to drive. I want to do a dedicated post on my new car and how I drive it, so that will do on the subject for now, but please look out for my next installment which will explain in detail how people like me are enabled to drive!

So, besides not getting a wheelchair, getting a car, and fighting an infection, not a great deal has happened recently. That is if we don’t count last Tuesday, known to us as Sarah’s birthday! As I kind of spoiled her 21’st by being in HDU rather than Centre Parcs, it was nice to repay it a little by just being able to be there. We spent a nice morning relaxing with presents and cards (obviously flowers were included). We spent the afternoon at Sarah’s Mum’s having food, which as anyone would agree is a prefect afternoon for us.

We also met up with a friend I met in hospital last weekend, which was a lovely thing to do at long last. What with covid, my lack of triride etc and general life getting in the way, it was a long time coming but I’m glad we finally got to meet again. Between running around chasing ducks and getting ice cream, the kids (big ones included) had a lovely time, and we’re all looking forward to doing it again soon!

Hopefully I’ll be able to write soon about more exciting things coming my way, most importantly my new chair. I’d like to thank everyone for sticking around and still reading; my posting has been rather erratic again mostly due to lack of anything to post, but now that I am mobile and independent I aim to write a lot more. I’m hoping to be able to highlight some issues people in my position face, but obviously it won’t all be negative. I hope everyone is staying safe, and I promise regular programming will resume shortly!