It’s the end of the world as we know it

Stop the world, I want off. So much for going to the Winchester for a nice cold pint and waiting for this all to blow over! All jokes aside, this evening’s developments are huge, and genuinely do mean that our entire way of living will change, both immediately and for the foreseeable. Even when normality resumes, whatever form that may take, the effects of what is occurring right now will be felt for years to come. Between unprecedented aid packages from the government to the degree of cooperation from the general public, this is unlike anything that has ever happened before and it is incredibly unlikely that we will ever see something like this again in our lifetime.

I really don’t have a great deal to say tonight. With all that is going on in the world, it is so hard to keep up with accurate and reliable information, so it would be wrong for me to comment on anything other than things I am up to date on the facts about. What I do know is that there are so many people suffering the effects of this outbreak, and these effects are much further reaching than just physical. From self employed staff losing business and having to worry about if they will stay afloat, small family businesses having to lay off staff to well known restaurants and pubs having to close and not know when they will be allowed to open again, my heart goes out to anyone and everyone affected. And that is before we even get to the uncertainty around those on zero hour contracts who live month to month reliant on the gig economy…

Sarah and I are lucky to find ourselves in the position of being able to look after Amelia at home, and therefore we can effectively self isolate. However, there are so many people who will struggle to do this, from our incredible NHS and healthcare workers to those ‘key’ members of staff such as truck drivers, store cleaners and emergency service workers. One thing that I have found to be incredibly lousy so far is the lack of definition provided by the government; they are leaving vague, unhelpful statements lingering in the air for far too long. Only 48 hours after saying that schools would remain open for vulnerable children and the children of key workers did they actually define the term, which caused even more anxiety in an already volatile situation. I count myself extremely lucky that I do have some level of certainty through all of this; at least I know I don’t have to worry about childcare.

As with any post around this, let’s say situation, I’ll always try to be balanced. I dont want bags of negativity in my life, so where there is bad there must also be good. For one, I get so much more time with Amelia. HAving spent the last half of last year in hospital I didn’t get as much time with her as I would have liked, so here is a great opportunity. Plus, we get the absolute privilege of helping her to learn at such a young age. Obviously we will have help from the school in the form of pre-set activities and ideas, but what a thing to be able to say to her in the future, that during the great plague of 2020 we taught you to read! Another good point is that in modern life, family time often comes at a premium. Hopefully some of those now required to work from home will benefit in that respect!

The biggest positive of all however has to be the sense of community spirit that is constantly being developed and demonstrated. I see community groups on facebook offering everything from people adding extra shopping so as to donate to food banks to people offering to grab essentials for isolated individuals. People are sharing their expertise; as students head home, many of my teacher friends have taken to facebook to offer help and advice wherever possible. Even things like brightening up people’s day by posting a nice picture have a profound effect; this really is bringing out all aspects of humanity. Hopefully we will learn many lessons from this, and not just about disease preparedness. We can all be kind, we can all work together, and we can all do our bit to make the world a better place.

Dropping the C-Bomb

By no means am I an expert, or do I claim to be in a position to offer advice or information, so please do not take anything I say as gospel. There is a lot of misinformation and scaremongering going on, so this is my disclaimer; follow government and other official advice. This post is a personal view, and I am in no position of authority. My views are my own.

I have to say, when I planned on leaving hospital and my discharge drew near, I tried my best to run through many scenarios and plan for as many eventualities as possible. I thought about having to go into a care home, having to use swimming pools for showers, how i would get out and about without Sarah… One thing that I can categorically say did not cross my mind is a worldwide pandemic.

Covid-19, otherwise known as Coronavirus, cov-19, Wuhan flu, China flu or any number of other names is all that’s in the news at the moment. It’s more than a pandemic, it’s absolute pandemonium. There are bare shelves in shops, hour-long waits to simply get into supermarkets, and the one thing that is far too common at the moment is a sense of self preservation at the expense of all others. And if I’m honest, that scares me a hell of a lot more than the actual virus ever could.

At the time of writing, the official advice given states that if you are advised to get and offered a flu jab every year, you fall into the category of ‘at risk’ when it comes to this new virus. That means I fall into the ‘at risk’ category, and when you couple that with my reduced lung function, my reduced ability to effectively cough and my weakened immune system following months in hospital and recent infections, I think it is fair to say I am trying my best to take this situation seriously with a clear and level head. I do not buy into the panic, the scaremongering or the conspiracies, however I try to see the facts and I see this getting way worse before it gets any better. My reasoning for that is that we can look at how other countries who are ahead of us in their reaction to the virus, and they are all in a much worse place than we are currently. So, what exactly are the facts I hear nobody say because they are thrown at us in a way that makes us think we all understand but don’t? Well, this is how I see it.

There is a virus going around, which is much like seasonal flu or an Upper Respiratory Tract Infection, however there is no vaccination against it and currently no known cure for it. It also appears to be much more infectious than seasonal influenza. We as a country must therefore work together in order to protect the most vulnerable, such as those with preexisting respiratory conditions or cancer, and the way in which we can work together is by ‘social distancing’, or avoiding being together as much as is possible. The current evidence suggests that the virus is spread when people with the virus cough or sneeze, and the droplets from that cough or sneeze find their way into another person’s body, through mucous membranes in the mouth, nose and eyes. Therefore, by avoiding others wherever possible (social distancing) we can reduce the spread of the virus. The problem there is that it is not physically possible for everyone to isolate themselves from everyone else. We need to shop, we need to take care of others, the list goes on in ways that we cannot avoid being in close proximity to others. What is the point in this then? well, that is the ‘delay’ aspect of the government’s plan. by slowing the spread of the virus, it gives the health service chance to deal with all of the cases that need hospitalisation. Of all cases, approximately 5% are critical and therefore require hospitalisation. So, with the UK population being around 66 million, that means  3300000 people are going to require hospitalisation if everyone in the UK catches it. Now that is clearly a very dramatic number, but to keep it as simple as possible in my head that is how I see it. That number, 3.3 million, is simply far too much for our amazing NHS to deal with at once. So, by socially distancing and slowing the spread, we have a steady stream of people becoming unwell rather than everyone at once. This also means that those in hospital already have a chance to improve and be discharged, thus freeing up beds.

This is the exact reason we all need to work together. These are unprecedented times that we live in, and we are making history as we speak. We are all socially responsible to play our part, and I for one really do believe that we can do it. Obviously I’m not thrilled about it, but that doesn’t really matter. Personally I am avoiding large crowds wherever possible, making sure I and everyone who enters my home has good hand hygiene, and trying to remain as calm as possible. Sarah and I have not been ‘panic buying’, but we are being sensible in what we buy. There is no point filling up cupboards with food that goes off quickly, but at the same time we don’t need 20 KG of dried pasta sat there. I see this as being a delicate balancing act, matching purchases with what we actually need and not going overboard. At the same time, the media-induced mass hysteria makes that near impossible, as the few people buying up trolley loads of toilet roll leave nothing for the rest of us. If everyone simply bought what they needed and maybe a few extras, we could all slowly build up enough to last should shortages come to pass. I do believe that there may be supply problems; if truck drivers, warehouse workers, shop workers etc become unwell, then there could well be shortages. Having said that, it simply is something we will have to deal with. Look at generations before us; during wars, when there was nobody to do those jobs, everyone somehow managed, and we will manage this. It is is a once-in-a-lifetime occurrence hopefully, and when it passes I want to be able to look back and say we did well.

The latest announcement from the Prime Minister is that all schools are to close from friday, except for those children whose parents are critical to the efforts and work in the NHS, emergency services etc. This is going to change things a great deal, however the basics will stay the same. As we go into this time, I’ll try and update everyone with activities and things we do with Amelia that fall into the ‘safe’ category. Obviously normal school holiday time activities are out as most are social, but we look forward to having so much time with her!

Overall, there are a few basic points to remember.

  • Good hand hygiene is essential, so wash hands regularly with water and soap for at least 20 seconds with use of hand gel between washes
  • Coughs and sneezes spread diseases has never been more accurate, so use a tissue wherever possible or cough into your elbow
  • Avoid large crowds such as sporting events, arenas, busy shops etc
  • Try to stay calm, even though it’s a scary time we are all in this together
  • Try to remember those around that may suffer more; keep in touch with elderly neighbours and relatives, especially if they can use technology such as facetime, Skype etc.

Mental health is going to be a huge thing to try and manage throughout this whole experience. With being in such close proximity to others we live with for an extended time, tensions can run high. There is no shame in finding things difficult, so remember to talk!

Another thing to remember is all the things that can still be done. Board games with the family, gardening, going for a walk, finishing those odd jobs around the house… there are so many things we can all do, and make the most of this time. There are community groups popping up all over facebook offering ideas and assistance where possible, and I would love it if anyone who read this could benefit (or help) in any way. Community spirit has been seen all over the world recently, most notably the singing from balconies in Italy. Let’s all make the most of this, and show that no matter what we value each other.

On a final note, this blog is very personal; it may be on the internet and an open read, but it’s like my personal diary. I write what I think and press post. I don’t mean to come across as telling anyone what to do, so please don’t think I am. Being in a chair means that I can’t be as helpful to my community as I would like to be, so this is my way of doing my bit and spreading the message. If I can help anyone in any way, please get in touch. I’m always up for a chat, I have found some brilliant resources for young children, and I am in touch with many people in the local community (Teesside) that I can put you in touch with as needed.

Thank you to everyone who reads and supports me; it honestly means the world. This is hard, and will only get harder, but we will thrive again. Peace and love to all.

Sad but true

Well, my ankle appears to be healing nicely, or at least the bruising is. Trying to remember to not just throw my legs about like normal is proving to be a lot harder than anticipated; it’s crazy how easy it is to forget you have an injury when you can’t feel it! I’ve tried my best to elevate and keep it safe, but despite being sat down all day it’s easier said than done!

Last night, our friends Aaron, Lucie, Jack and Abi came round for drinks and a takeaway. It’s crazy how the simplest things in life, like drinks with mates, make the biggest impact on your mood. The last few days I’ve been a bit up and down, but it was exactly what I needed to remind me why I need to push through the bad times and focus on the good.

I’ve had quite a few reasons to smile recently, not least of all being home for over a month now! I’ve had a job interview, been conditionally offered the job, I’m getting closer to a car… there are so many positive things going on in my life, that when something negative comes along it really stands out. For example, Sarah recently had to delete some troll comments on my Facebook page. They were just pictures, and although some could have found them offensive I just thought to myself ‘why would you bother taking the time?’ To me, it seems as though there must be something more productive to do with your time than to sit and post spam on a blog ran by a person you clearly don’t know!

Another example is how other people try to drag others down, through what can only be imagined to be either ignorance or jealousy. So, yesterday, someone I have met through my injury took the time to sit and write multiple Facebook posts about me, without tagging me, messaging me or even attempting to get in touch with me. Although I wasn’t named, it was pretty obvious what it was about. I had left a group chat that wasn’t helping me keep in a positive mind frame, and then suddenly these status’ appeared… you do the maths. So, wanting to give this person the opportunity to air their issues with me, I messaged them this morning. What resulted was a poor attempt at causing aggravation and upset, and me asking questions without receiving answers. It even got to the point of name calling and being somewhat abusive, which was thoroughly unnecessary. I’m a big believer in live and let live, and when it comes to having an opinion we can all have our own. However, clearly certain people are not of the same school of thought. I’ll not name names, as I don’t believe that to be a good idea or conducive to what I’m trying to achieve here, but in this person’s eyes I was something akin to the devil for ‘turning against the group’… give me a break. All throughout this, let’s call it a conversation, points were raised which I either adequately countered, asked for more clarification on, or agreed with. None of the questions I asked were addressed, and when I raised a point negating the allegations – and I use that word loosely – against me, I got nothing in reply. The best was still yet to come though. The final message I received from this person is shown in the screenshot below.

I generally find that this community of people, both with and without the same condition as me, is generally fully supportive and understands the importance of mental health. On this occasion though, I have seen the opposite. If I was a different person, and I wasn’t as comfortable with myself as I am, the comments made could do some serious damage. I raise this point as the person involved is twice my age, and really should know better considering the support I have seen them need. Men under the age of 35 are the most at-risk group for suicide, and it’s things like this that can easily lead there. Luckily I am not intimidated, upset, or even remotely interested. I post this to raise awareness of the fact that despite thinking you know someone, they may not always have your best interests at heart. This was a low blow by anyone’s standards, and more importantly it’s just plain nasty. There was nothing to be gained by saying this, and yet here we are.

So, the moral of this story, is that you are well within your rights to disagree with someone. You can do what you want, both on and off the internet, and most likely there will be no consequence to your actions. But as a whole, we all need to try and consider what we say to others. We don’t know what they have been or are currently going through, and we don’t know what effect our words could have.

Clearly shown below I did reply once again to this individual, but they have ignored me since then, so I would just like to make one thing abundantly clear; I do not have an issue with anyone. Not this individual, not anyone they are referring to, nobody. I enjoy meeting and speaking with others in similar situations, and I met a lot of good people in hospital. I guess there has to be one bad apple in every barrel.

In hospital, everyone is vulnerable at some point. At the point at which I met this person, I was not. I’m not sure who is spoken for by the use of ‘we’, but if that was the only reason this person spoke to me then maybe they need some help. And, if I was only liked for my vulnerability and the chance to exploit it, I’m sorry to disappoint!

Back to the beginning!

I’ll be back! That’s what I thought the last time I left James Cook hospital following my overnight stay. What I didn’t realise at the time was quite how soon that would be. Yesterday morning I woke up and started the day as normal. When Sarah was checking my skin, she noticed my ankle was swollen and not a particularly good colour. Oh. Bright yellow with a tinge of green, even I thought it was a funny colour. So after a long morning of trying to avoid it, between the district nurses and Sarah I was convinced to get it checked. Oh well! What better than an afternoon chilling there, with a packed room of people all waiting to be seen before me. Thankfully there wasn’t a single scaremongering moron wearing a useless surgical mask anywhere in sight.

Surprisingly quickly my name was called and I was taken through to see a doctor, who had one quick look at my ankle. After a twist and shake, we were sent off to X-ray for foot and ankle pictures. Unfortunately they were not the type some people like to buy on the internet. We were seen almost immediately, where the lovely radiographer helped to position my leg, and as soon as it began our photoshoot was over. I headed back to A&E, then once again back to the waiting room. After no more than 10 minutes my name was called again, and I was taken back to the doctor who initially saw me. He showed me the X-Rays, and explained everything he was looking for and could see. I’ve seen a fair few before, nowhere near enough to be considered able to read them, but even i could see that my bone density had dramatically decreased. We saw what looked like a break in one of the bones in my ankle, but as i had no pain and don’t weightbear anyway i was sent home with the advice to elevate it and come back if there are any other problems!

Overall it was a fairly pleasant experience, nothing like the horror stories you usually hear of queues out the door and hours upon hours of waiting. The only thing i could possibly improve was the disabled toilet, as it was a nightmare trying to shut the door. Not bad going, all things considered.

In other news I have finally started putting together a podcast, which I am pretty confident in not doing so well but it’s fun for me, so who cares! If you do enjoy listening to ramblings and stories of hospital, please consider giving it a listen when i finally put it out there. Also, if you have anything you would like me to talk about or even would like to join me, please get in touch!

On one final thought for the day, we all need to remember that life is too short to be selfish and unkind to others. the state of the country at the moment, with all hell breaking loose over a virus, is absolutely ludicrous. If one or two people buy all the hand soap available in shops, then how can the rest of us wash our hands and thus protect the wider community?! It is times like these that we all need to pull together as a team, and make sure that we get through this with as little hurt for people losing family members as possible. We survived SARS, Swine flu, Mad Cow disease, Ebola, the mayan calendar running out, Y2K… We will survive this. Just wash your bloody hands!

Pretty colours!

All hands on deck

Well, it finally happened. Today was the day I went skydiving! Okay, not quite, I just experienced an unexpected rush of gravity. In plain terms, I fell flat on my arse, very literally. Whilst I was transferring into my wheelchair, I somehow slipped and found myself rapidly approaching the floor. Thankfully, I did some form of spin and landed facing the way I’d come from, rather than face planting or hitting into my nightstand. That didn’t make it any more fun however, and I quickly shouted Sarah to come and help me!

After a refresher on how to recover courtesy of YouTube, and a slight rearranging of the house to give me a better surface to work on than just plain laminate flooring, Sarah and I managed to somehow get me up on my knees from where I could claw my way back up onto the bed. In all honesty, it was very very hard. That’s probably partly to do with us having a soft bed, and me being rather weak still (I’m working on it) and, of course, I could always do with losing a few pounds (not even pretending that I’m working on that). Thankfully investigations found that I’d sustained no injuries other than a bit of a bruised ego and slightly knocked confidence. These things are bound to happen, but that doesn’t make them any more pleasant when they do. I had practiced this a few times in physio, and I’m definitely glad for that.

Whilst obviously an unpleasant experience, I have to say I’m glad it’s happened. I was going to end up falling at some point, but at least Sarah was here and we managed between us to stay calm, formulate a plan and sort me out. It really was one of those “Oh S**T” moments, as the reality of gravity being an enemy really hit home. Living with any condition that results in falls is not pleasant at all, but until now I honestly didn’t realise how vulnerable I could feel. There was so much more to think about than just getting back up; have I hurt myself? Have I done some serious damage? What about pressure relief to avoid skin break down, do I need to get on my cushion? What about if I’m actually stuck? Although this is my reality, in all honesty it wasn’t all that bad. I won’t be all that upset if it doesn’t happen again for a while.

In other news, now that the appropriate paperwork has arrived, i can finally start to look at ordering a car! I am unbelievably excited for the independence it will afford me. From going to the shops, driving on family days out, or simply taking myself off for a cheeky maccies, I never realised how much i would miss driving if i ever couldn’t. And I would like to address a point a few people have made, in regards to me not being a good driver. I am a very good driver, at least in my own opinion. Not once have I crashed a car! Motorcycles on the other hand, not my forte…

Under the weather

I have to begin by saying this post is brought to you by my bad mood. Unfortunately, only I sponsor me, so I don’t get paid for saying that, but at least I’ve warned you.

The last few days have not been good. I’m not going to say terrible, because that’s a lie and there has been good moments, but I’ve spent a lot of it in bed. As I’ve said before, having a spinal injury means that I have issues with my internal plumbing. As a result of the infection I’m currently fighting, my entire internal system is being messed up, which is seriously getting me down. I have to deal with things like ‘accidents’, bloating, discomfort and other such fun additions to my daily life. Whilst normally I’d not complain, this time it just seems to be hitting me. Oh well. I end up spending a lot of time in bed, which leads to a lot of bad moods, and then unfortunately that extends on to my family. It is incredibly hard to stay positive when things just seem to keep going wrong.

As well as trying to break through this infection, I’m also trying to break through the invisible wall that seems to be holding me back from a new wheelchair. When you need some form of mobility device like a wheelchair, here in the UK you go through your local hospital trust which has a department known as wheelchair services. At present, I am trying to be seen by them for fitting out for a new wheelchair. The one I currently have is, although usable, unsuitable. My mission is to have a new one as soon as possible, as this will increase my independence and abilities.

That’s all there is for today. I plan on doing some educational posts soon, on conditions like mine, wheelchairs, anything even remotely related. If there is something you would like me to address and explain, please get in touch!

Can’t keep away.

Well, I’m 22 now, so that’s fun. I had a lovely day for it (wednesday), spent having fun with Family and Friends. I recieved a lot of lovely cards and gifts, including a lovely bottle of whiskey… I’m starting to build a lovely collection now!

Starting the day late, Sarah and I headed into middlesbrough for lunch at Central Park, which was lovely as usual. An added bonus is that it is extremely wheelchair friendly, with high tables and easy access. Win! From there, we headed back to my old stomping ground, the Spinal Injury Unit at James Cook. This time was for a lovely reason though; I was booked on a wheelchair skills course ran by a charity called Back-Up, one of the three leading spinal injury charities. I’ve had input from them before in the form of telephone mentoring, so I was looking forward to this. It involved going from the very basics of how to best push a chair, all the way through to fun things like back wheel balancing (wheelies) and tackling big kerbs solo. It was very fun and informative, and more importantly I got to see some of my old therapy team which was lovely! From there, we whisked straight off for food with some family. My sister is a talented Baker, and very kindly made me a salted caramel cake, which obviously went down a treat. To make it extra special, it was even green day themed. Another win!

Following that, we headed home for a few quiet drinks with Jack, Lucie and Aaron. However, wherever Jack is concerned, quiet does not come into the equation. Glowing balloons and spark fountain candles all found their way into my house, which was certainly fun for him at least! When we eventually did head off to bed, I could safely say it was a good birthday. Unfortunately, that’s where it ended…

The next day, Thursday, saw Sarah and I head through to Teesside Park to do some shopping. What started out as a simple shopping trip soon turned into a mad dash for the loo, and me feeling worse than I did the morning after the party. Oh dear. After a while of throwing up I thought I felt better, but unfortunately not. On the way home Sarah thought it good to call my GP, and I’m quite thankful she did. The greeting of ‘you look awful’ confirmed I was, indeed, a little unwell. After a check over it was determined that I had another water infection, and the GP wanted me to go back into hospital. I agreed if I felt no better in a few hours, so off we went with anti sickness and antibiotic prescriptions in hand. A few hours passed, and on Sarah’s strict instruction, I rang the GP saying I felt no better and that I would make my way back to James Cook. It wasn’t without worry however; I wasn’t going to the spinal unit, and so I didn’t really know what to expect.

Despite our initial misgivings, we shouldn’t have worried. The ward I was admitted to, the assessment unit, was absolutely brilliant. The staff were caring and attentive, and the entire thing ran like a well oiled machine. After a few tests and stabbings me for blood, I was pretty much left alone to sleep. I was possibly to be given IV antibiotics and fluids, but this was ruled out once my blood results returned. After a pretty restful night, I was given some more antibiotics and sent on my way. Overall, that experience was brilliant! My nurse, K.D, was incredible. Newly qualified, but with the professionalism of a 20 year veteran, I was at ease throughout my whole discharge. It really does make all the difference when nurses have time to chat to, and more importantly listen to, their patients. So thank you!

Overall it’s been a bit up and down the last few days, and I’m extremely grateful to be home again. Although I slept well I missed my girls, so that has cheered me up. I think it’s knocked my confidence a bit, being back in hospital so soon after discharge, but I won’t let it keep me down. Onwards and upwards!

On a final note, with the excitement of GP appointments and hospitals, I forgot to thank everyone for my birthday wishes. Cheers to everyone who sent messages, text, sent cards and got me gifts. It’s very much appreciated! I’m going to save all the money I get to put towards a freewheel, an accessory for my new wheelchair – when I eventually get it. Hopefully that won’t be too long.

I’ve a lot of exciting things to look forward to, and I’m still enjoying being home. I’ve had a lovely day today, despite not feeling 100%. Amelia has crafted, and we have watched movies and even better just chilled and cuddled as a family. It’s what I’ve needed, and I couldn’t do any of this without Sarah and Amelia. Peace until next time!

What better to make us feel better than matching hot chocolates?! Or, if you’re Amelia, Babychino’s!

Week round up #2!

Wow! Firstly, I’d like to apologise for the lack of posts recently. In all honestly I’ve written a few, and just not been up to posting them. Since coming home my head has been a bit up and down, and I’ve not fancied the interaction involved with posting. So sorry about that, but I’m here now, and this is a good one; I’ve had a great week and packed a lot in.

Let’s begin last wednesday, which saw Sarah and I, along with our friends Lucie and Aaron, take Amelia to the sea life centre in scarbrough! What a great place that is, full of amazing, weird and wonderful creatures. And then theres the fish! We saw penguins, turtles, sharks and so much more. Amelia absolutely loved it, and I think the rest of us did too! Well, up until the spider crabs scared the bejeesus out of us. If I was a fish, I’d definitely be a ray of some kind. Everyone loves them guys! After we had finished learning all about urchins and seals, we decided it was a good idea to head down to the promenade for a walk, and possibly an ice cream (definitely only for lucie). Spoiler alert, it was not a good idea at all. It was cold, wet and windy. We still made the most of it though, playing the penny arcades and browing the most brilliant shop ever, ancient warrior. Sarah didn’t agree that an Assassin’s Creed sword would be good home decor, so unfortunately I left empty handed. We headed home after just over an hour, all soaked and freezing but happy non the less. It was decided on the way that instead of a pub tea, we would just grab a takeaway. Much better.

The next few days were pretty boring after that, as we were saving ourselves for Saturday night. Yes, finally, we had something to look forward to; our engagement party! Friday saw us setting up the room; moving chairs and tables to be slightly more accessible, arranging balloons and table decorations… having not thrown a party like this before we felt a bit out of our depth, but oh well. If it comes to it, we could all just drink enough to forget it. Thankfully, we did everything right, or at least I think we did.

So, the big event – our engagement party – was on saturday night. I started my day by staying in bed till around 2ish. Now that might sound lazy, which it probably is, but there’s a good reason for it; I still have to build up my tolerance to being in my chair, in order to avoid pressure sores etc. By staying in bed till later, I wasnt going to push my luck and be in my chair for, say, 15 hours. So I got up and headed down to the venue, and set up the last of the balloons. Some of my family were there already cracking on putting out nibbles etc… eventually we got all the balloons inflated, obviously using helium tanks and we were just about ready. We had a good look at our incredible cake, which was half beauty and the beast and half star wars! Thank you to Katie for that, your work is incredible. We also recieved a lovely gift from my adoptive auntie Kimmy, a lovely huge balloon in the form of an engagement ring.

After a mad dash home to shower and change, Sarah Amelia and I found ourselves sat in a big empty room with Sophie and the DJ for company. Whilst at that point it seemed as though nobody was coming, the music got louder, the lights got dimmer and the room got fuller by the minute. In all honesty looking back it feels like a complete blur. It was an absolutely fantastic night; all of our friends and family in one room, all coming together to celebrate with us. Almost as quickly as it started it was time for the food to be dished out, and then onto the part i wanted out of the way quickly; the dreaded speech. It was a nice opportunity to thank everyone for making the effort to come, especially a few individuals who have helped us so much over the past months. Thankfully it was over quickly, and the band took to the stage. My step brother, Chester, is the drummer for the band ‘The Poker Club’ and they very kindly offered to play for the party for us, so cheers again for that lads. They were on top form as always, and everyone seemed to enjoy their performance. I honestly don’t really remember the order of much else that happened; I was chatting, laughing and drinking the night away then before I knew it, we were getting ready to head home. Overall it was a fantastic night, and a brilliant opportunity to let our hair down after so many tense long months. And yes, I still say that despite the hangover. Another huge thank you to everyone who managed to come along and make the experience so special for us; we truly appreciate it. Although I didn’t get anywhere near enough time to spend with everyone, I am so glad you all came. The same thanks goes to the people who tried but couldn’t make it; we understand, and thank you for trying. It means a lot!

The following day saw Sarah and I spend the majority of our time sat in bed feeling very sorry for ourselves. That was alleviated however by opening the numerous cards and gifts we received. We are extremely lucky to have received what we did, and we are very grateful to everyone for their kindness. We got some wonderful gifts including far too much alcohol, some stunning gin glasses and even a new knife block, something I’ve wanted for years! We also received some lovely cards and messages from people who unfortunately couldn’t join us on the night but were there in spirit, so that was especially lovely.

Now that it is all over, I honestly feel a little deflated, although i suppose that is to be expected. Next up is my birthday tomorrow, and I have a wheelchair skills course booked to make the day super fun (sarcasm). At least the day will be spent with Sarah, and I’m hoping a few of our friends will pop round for drinks on the evening.

That pretty much summarises this week! It has been such a whirlwind, but I have enjoyed every minute of it. My aim for this week is to start sorting out my assessment for a more suitable wheelchair, so I’ll let you know how that goes. I hope this week is as good as the last, as I am really starting to enjoy this whole life at home malarkey.

We scrub up well I reckon!

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!