Week 1 roundup

Well, it’s been a whole week of freedom, and what a week it has been. I’ll start by saying that in no way has it been easy, but definitely better than the last few. It’s been a learning curve – quite an intense one if I’m honest – but definitely a good week.

Most of my time has been spent in my home. I guess I just need some time here, after all it’s a brand new environment as we had to move, so I need to learn about the place I live as well as about myself. I’ve tried to get into a routine, although that hasn’t particularly gone well. I’m trying to break out of the institutionalisation brought on by such a long time in hospital, and in order to do that there has to be a little bit of chaos in my life. I’m not complaining though. It’s been so nice to choose what I want to do and when, although I do still have to consider Sarah and Amelia. Speaking of Amelia, I’ve looked after her for a few times myself now and it’s gone rather well. One thing I did miss was reading to her on an evening, so I’ve had lots of chance to do that and I’ve made the most of it.

As well as getting to know the house, I’ve been learning a bit about myself and my needs and limits; boundaries can only be found by pushing them too far, so I’m trying to push myself as best I can. Saying that, I’ve been absolutely drained this week, which I put down to the change of pace and the relatively new environment. I’m sleeping much better in my own bed, despite occasionally losing a lot of space to the littlest bear…

I’m hoping to be assessed by wheelchair services soon, who are the people in charge of getting me a new NHS issue wheelchair. They’re not all the same and, although good, the one I currently have isn’t particularly fit for purpose. I catch my feet a lot, and have to reverse around the house quite a bit to reach somewhere big enough to turn around. I’d buy one myself, but until you need one you don’t realise the prices on these things… roughly £2k plus for a basic one, then hundreds more on upgrades if that’s the way you choose to go. One thing that seriously bugs me is that the whole disability equipment market exploits it’s captive audience so much, as everything is just so expensive. For example, a power-assist clip on device like the one I tried the other week would be around 6k if I got one to meet all of my needs. But that’s a complaint for another day.

Today unfortunately has seen me in bed for most of it, as I had a few angry looking marks on my skin when I woke up. I’ve got out into my chair a little bit whilst Sarah goes to the gym, but I’ll be sensible and rest up as much as I can. That said, I’m hopefully headed to the Sea life Centre tomorrow with friends, so we shall see what happens.

On a final note, I’d like to draw attention to a few friends of mine, who like me want to share their stories. One is a school friend who has an instagram account called diary.of.a.spoonie and she raises awareness of her conditions. Katie is an incredibly strong person, and I’m lucky to call her a friend. Check her account if you get time! Secondly there is a page on facebook by the name of Nick’s Last Steps, which really is worth a read. Nick and his wife Nicky run the page, which follows Nick’s journey through spinal injury and his rehabilitation following an extremely horrible car crash. Nick has had a lot to deal with but is incredibly upbeat and they are both just lovely, down to earth people with a story to tell.

Hopefully this week is as good as the last, although I’m not counting on smooth sailing just because I’ve escaped!,

Credit where it’s due

Not many people can say they are as lucky as I am. Yes many people go through ordeals like mine and come out the other side, but not many can say they had a genuine angel to help them through the darkest times. I have had some very dark times, but despite all my pushing away and incredible ability to be annoying, Sarah has still stuck around. How? I don’t know. She has though, and I genuinely wouldn’t be here now without her.

From the Initial few days when she wouldn’t leave my side in ITU, to making sure I was as comfortable as possible despite the difficulties in HDU, to being there constantly for me to vent to in the spinal unit, I dont think I have met anyone quite so incredible before. She’s been my absolute rock, and I really don’t give her enough credit. I honestly believe that this has been just as hard if not harder for my family to deal with than me, and nobody has dealt with as much as Sarah.

Whilst I have been lounging around in hospital she has packed up and moved houses to somewhere accessible for me, she has kept on top of all the Bills and things that need doing, all while taking care of Amelia. She has done so much and still does. I don’t think I could even begin to say thank you enough. I’m just glad you’re mine.

Happy valentine’s day all, especially to my one and only!

I love you, Sarah Jane!

A cold start

Back down to earth with a crash. After being on such a high at getting discharged following a whopping total of 198 days in hospital, I can say I’m now starting to live my new reality.

Not everything can be plain sailing, and I understand that things have to be trialled to get it right. However, that doesn’t mean I have to be happy!The majority of my first day as free man was spent waiting around for people to arrive; unfortunately they hadn’t received the message that I would be waiting. So that was a good start.

I was also visited by the people involved with adapting my new home, which was much more successful. New plans and solutions are being put in place, and I think that my little world is going to start to come together.

Being home is, honestly, incredible. I have my own space, nobody else listening in on every word I say, and the only time I wake up is when Amelia sneaks in for a cuddle. What’s not to love?! This is what I’ve been waiting for almost seven months to get back to. There must be no better feeling than being back home.

Overall, I’m doing well. There are bound to be ups and downs, but I’m just going to have to learn and adapt. This life is not going to be easy. But I am meeting people all the time that truly inspire me, and I have a brilliant support network already. I have an amazing family, some truly fantastic friends, and plenty to keep me going. I’m excited for the future!

D-Day HAS ARRIVED!

I write to you now from the relative comfort of my living room. Not some strange hospital bay, full of other people and strange things, but my own home. And this is where I will stay, for today I have been released! I feel I’ve done the time, but I’m out the other side and in many ways better for it. Now I’m able to relax and start once again looking to the future. Happy days!

This quick post is just a note of thanks once again to all of those who have supported me along the way; doctors, nurses, healthcare assistants, physio’s, OT’s, the list goes on and on. The biggest thanks though has to go to my friends and if possibly more so my family; without the support I have received I wouldnt have done half as well as I have. I’m now back home with my girls where I belong, and I couldn’t be happier if I tried.So here’s to a new life, with lots of challenges but exciting adventures yet to come. Cheers!

Photo credit to my beautiful fiancee Sarah, who has been my absolute rock.

Full circle

Yesterday, Sarah and I headed somewhere that neither if us really wanted, but needed, to see. That place has very distinct yet different mmemories for the both of us, and on the whole they are not particularly good. I’ve talked a little about this place before (see Intensive care or Intensive Scare) but, until now, have not been brave enough to visit. I’m of course talking about the intensive care unit where I spent the first eleven days of my hospital journey, and eight of those days were in a medically induced coma.

I should begin by explaining why we ended up there I suppose. Two days ago, whilst sat in one of this hospital’s many corridors, a consultant I recognised instantly walked past me. She then did a little double take, and came across for a lovely little chat. This lady was one of the consultants, and a big part of the amazing team, that took care of me on ITU and then onto HDU. After a quick chat, it was dropped into conversation that I would be welcome to head up and see the place again; although this time it would be through less drugged up eyes. Having been considering this for a while, I decided it was one of those things I just needed to do.

Once on the unit, my mind went into overdrive. When we entered the doors, we were asked to wait in the waiting room (duh) and that was when the reality hit me. I instantly tried to put myself in the mind of my family at the time; they all had spent hours waiting there, and I couldn’t begin to imagine or understate the mental torment they all experienced. Not a pleasant start. Thankfully, the lovely consultant (who as I’ve not asked permission I wont name) came out of her office and had a quick chat. In her experience it is quite common for returning patients to quickly become overwhelmed; after all, this is the place that they became reborn in a sense. After a few minutes of chat, we headed through to the ward proper, and that is where it got real.

Now, this place is not quite what you see on tv; it’s not a tranquil, calm place with nurses and doctors tending to the sick with poise and elegance. In reality, it is a very strict, tightly organised chaos. Alarms, buzzes, monitors flashing; I didn’t know where to look. We were taken through to the end of the bad that I had been in, and it was a real déjà vu moment. Although I have a million and one thoughts in my head, a lot of them lack context and and i have no idea what is a memory or what is completely made up. Being there made me realise a lot of my memory is a mixture of real life, and pure imagination. The medication induced delirium I experienced was based in reality, it just took it and ran away. So it was nice to know not everything in my head is fake.

As I’ve said all the way through this, the first few weeks in particular were much harder on my family than me. All I had to do was lay there and heal; they had to watch as everything went on. I couldn’t be more grateful to everyone, but especially Sarah. She sat by me, stuck with me, and got me through this life changing event. I love you. Going back to where it all started was obviously tough for me, but she still stayed with me and visited. Hopefully this will be a bit of closure for her too. There’s not many people out there who could do what she has done, and thank you will never be enough.

Overall, I’m very glad that I went up. It was a daunting experience, but I feel that with my discharge finally approaching, I can start to put this hellish half year behind me.

Here I go again… on my own?

Back in hospital, how thrilling. It’s hard to come back here with a positive attitude, especially when I just enjoyed a lovely weekend with my family. Home is much more, well, homely than hospital will ever be. I’ve learnt a few things this weekend, and not all of it has gone to plan or been particularly good or noteworthy, but I’ve enjoyed myself nonetheless.

One thing I have learnt this weekend is that despite all it’s misgivings, I’ll miss having the safety net of the hospital there when (if) I am eventually discharged. It’s a strange feeling; I really dont want to be here, but this is the place that I have spent the vast majority of the last six months, and suddenly I won’t be welcome anymore. Not a bad thing I suppose; being thrown in at the deep end surely is the best way to learn. I’m hoping to soon be booking appointments for my new chair, and that will make the experience of eviction all the more interesting.

Another thing I have learnt this weekend is that I do rely on people a lot more than I realise. The small things people do are often big things in disguise, and I really do appreciate everything people do for me, despite how I may seem sometimes. It’s hard to have all these emotions in your head, and sometimes the wrong ones pop up at the most inappropriate times. I’m not going to use any excuses or say it’s not my fault, but even when I’m an insufferable idiot I appreciate everything.

One of the hardest things about this entire situation is that no matter what you do, it’s not just you that is involved. The physical aspect may be mine, but there is much more to an injury than just one person. My family and friends have been through the ringer; watching me go through the physical aspect is, put simply, just as taxing. Mentally it must be torture to watch someone you love go through such an ordeal, and I can only say thank you to those that I am lucky enough to have in my life.

As a final thought, I have one last take on this weekend. One final lesson learned. No matter where I go, or what I do, injury related or not; I’ll never be alone.

Weekend in review

Wow, what a lovely few days I’ve had. The two nights I had at home managed to turn into three, which was fantastic. It’s honestly absolute heaven getting time in your own environment when you’ve been in a clinical one for so long. There are people who spend much longer in hospital than me, and hats off to them, but this is enough for me.

Saturday started with a mad rush; Sarah decided at 8.30 that we were going to the cinema to watch nothing other than Toy Story 4. Great! The only problem was getting myself ready usually takes a lot longer than the allotted time. Oh well; we managed. Amelia seemed to really enjoy herself, and that’s what it’s all about. The reward for me sitting through the film and not complaining came in the form of butterfly chicken and chips, courtesy of Nandos. Much more my style. From there, we headed to Smyths for a look around, and we all left with something new and shiny. Amelia with a barbie, me a very nicely reduced to clear xbox game, and then for us all a Nintendo Switch. Sometimes, you just have to treat yourself.

Sunday progressed at a slightly less frantic pace, with us meeting my dad and step mum for breakfast. Whilst you can’t beat wetherspoons for it’s prices, you certainly can for the warmth of the food. Perhaps it’s so cheap as they only pay half the electricity bill… whatever the case, it was at least edible, and it’s the company that counts. Another lovely morning passed. The rest of our day was to be spent bowling and, despite giving ourselves plenty of time, we still managed to be late. Nothing new there. I also managed not to come last! I’ll admit I had the bumpers up… and half the time Amelia took my shots… but still. It counts. From there, we took to pizza hut, where the food was much more amicable. We did all this with our friends Lucie, Aaron and Jack, with only Abi missing. This bunch goes to show it doesn’t matter if you’ve known someone forever or for a day; good friends are there no matter. Love yas.

So, on to today, where I find myself back exploring the innards of this lovely hospital. There’s not a great deal else to do if I’m honest. I’ve had my therapy for the day, caught up on plans for the week, and now I’m back doing what I do best; nothing. It’s Sarah’s Mum’s birthday today, so I’m sad to be missing out on that. I’m sure she will have a lovely time regardless. Happy birthday Sue!

As I start to come toward the end of my hospital journey, I find myself thinking about plans and what I want to accomplish both short and long term. For now, I’m focusing on rehab, and adjusting back to life. Long term I’ll figure out as I go. One thing I am focused on throughout though is educating those who don’t know, or dont understand, that being in a wheelchair is not a burden. I’m privileged to be alive, and I’m happy to be here. I’m a person, not a chair, and I will be seen as one. #seethepersonnotthechair is going to be a big part of what I do, and If I can help just one person I’ll be happy with that.

The only guy who had the bumpers down won… I think cheating was involved.

On the verge

Well, the time is drawing near. There are whispers in the halls, hushed voices at desks, and fleeting glances in the direction of a discharge letter…

Previous experience has taught me that getting my hopes up results in disappointment, so I’ll not do that. What I will do is take stock of what’s happened since the last escape attempt, and compare it to where I am now. By doing that, even I can notice the improvements I’ve made. Again, I have been told I can be too self critical, but I see that as a strength. The ability to appreciate improvement whilst baring in mind the distance I’ve yet to go is something I’m working on l, and I genuinely do feel as though I’ve made significant gains in my abilities. Being in a chair certainly isn’t as simple as sitting down all day, despite what it looks like. For example, today I practiced what to do when the inevitable happens and I fall out of my chair.

To practice, my physiotherapy consisted of me getting from the floor to my chair. That sounds pretty simple and straightforward but in reality is rather taxing. First, I have to move myself from my chair to the physio plinth using my arms and transfer board. I then ‘safely’ got on the floor, again with only my arms. After using benches and other assorted items to lift up and down, I managed to get sat on the cushion from my chair, then a bench, then back into my chair. None of this would be remotely possible without the amazing physio team I get to work with. That being said, it still takes a lot of effort from me, and it’s bloody hard work.

Anyways, I’m off home for the weekend. It may only be two nights, but I’m excited. Peace, comfort of my own home, no regimented timetables… heaven. More importantly, I have some proper family time at my disposal. I plan on relaxing, hopefully catching up with some friends, and generally starting to adjust in conservative hope of the discharge finally happening. I hope everyone has a great weekend!

Community spirit

Since starting this blog, and being on Twitter, I’ve seemed to come across a lot of people in similar situations to myself. By this I mean people in wheelchairs, people with disabilities, people who advocate rights for those who can’t advocate for themselves. On the whole, these are lovely, positive people with kind hearts and good attitudes, genuinely trying to make a change and get their voices heard, much like myself. However, as with everything, there are a few bad apples. There are a few toxic people out there, shamelessly promoting themselves and their own agenda under the guise of ‘activism’. And I can’t stand it. (Pun intended).

Being in my chair, I’ve come to learn what the term ‘ableism’ means. Essentially, it is discrimination in favour of able bodied people. I’ve not experienced it first hand, but I’ve been led to believe, by these keyboard warriors, that simply by being in a wheelchair I am a victim of this discrimination, which simply isn’t the case. I AM a person with a disability, which in itself is no issue. I am a person, and I am me. That is it. Nothing more, nothing less. I don’t expect preferential treatment, or to be regarded differently. I have needs to be met, and beyond that, I want to be treated the same as anyone else. The law is the law, and needs must be met. Other than that, those with disabilities do not particularly deserve any sort of preferential treatment. Lots of people are lovely and go above and beyond to help, but there is no expectation from me to do so.

The problem, I have so far found, Is that people don’t realise or understand that a disability does not make people stupid, or different, or needy. People don’t need pity, or attention, or anything. I by no means speak on behalf of anyone else, I just say things how I see them. For example, the other day in a toy shop, two little girls completely engrossed in their finds almost walked into me. Just before they did, what I presume to be their mother shouted down the aisle to “mind the wheelchair”. Not “mind that man” or “watch where you’re going”. I normally wouldnt have replied, but I quickly told her I was a person, not a chair.

We need to just be nice to each other, remember that a person is a person no matter, and all go about our business being as considerate as we can for others. I really do need to stress that 99.9% of the community I have joined is fantastic; the support offered by others with spinal cord injuries and disabilities in general is overwhelming. I just can’t abide the air of entitlement from some people.

I am very much an open book. I try to be as honest as I can about my life and injuries, both on here and in person. If anyone has questions, I much prefer people to ask. I imagine that most people in a similar position to myself are the same. All we ask is that you treat us fairly, with dignity, with respect, and with compassion. And that is all anyone can ask, able bodied or not.

Places and People

It’s strange how you meet people in places you don’t expect. What I mean, is that despite being in hospital (which, let’s be honest, is not a nice place) I’ve met some incredible people. One such person is a Doctor who’se gone out of their way to make time to help me introduce my daughter to my injuries, and taken time to really help me come to terms with my new life. Another is a lovely nurse who is not only a genuinely kind and caring person, but even thinks about my daughter on her day off and brings in ‘Frozen’ hair clips and bubbles to cheer her up. Yet another, a nurse who is close to my own age and takes the time to regularly have chats with me because she knows we get along well. There are many more incredible staff, and over the course of this blog I’m sure I’ll share a few more stories.

However, this one is not aimed particularly at staff, but other patients. One patient in particular actually. A gentleman I shared a bay with, just me and him, for a few weeks. Now, this gentleman was a good few years older than me, he was a retired miner to be precise. He was kind, thoughtful, caring, but most of all he was gentle and warm. I trusted him immediately, and we became good friends in my eyes. He always complimented Amelia, he checked on how Sarah was doing, and he always had time for a chat. Even when he was feeling down we would sit in our wheelchairs and put the world to rights. He was due to be going home in a few weeks, back to his lovely wife, and he was so excited. Unfortunately, this was not to be.

Without warning, my new friend became very unwell very quickly, and was moved from the bed space opposite me to somewhere the staff could care for him better. Unfortunately, despite everything, he became worse, and then there was nothing more they could do.

He didn’t deserve that. I’m not blaming anyone and I don’t know details, but he didn’t deserve that. It was an absolute privilege to have met you; in the short time I knew you, I couldn’t have asked for anyone to help me more than you did. I can only hope that I helped you when you were down.

Rest In Peace, Tom. I won’t forget you mate. Cheers.