Settling in my nest...

I cannot believe I have only been in this flat for a week and a half because already it feels like home. I have surprised myself how quickly I have settled in. Almost like I have been living here for years. I admit it feels surreal to be away from my parents but I am enjoying being a grown up and my new found freedom. It is nice to do simple things such as go to bed when I want (at home, carers would put me to bed at 10). Not only was the move positive for me on a personal level but it has helped to strengthen relationships with loved ones. Absence makes the heart grow fonder and all that jazz. Of course I was extremely apprehensive two Thursday's ago when I spent the first night here but them fears have now completely gone and I am now relaxed in my new surroundings.

My mum was (and still is) very anxious about me flying the nest but the thing is, I now talk to and spend quality time with my family more now I am out than I did when I was back at home. I have not just forgot my parents and visit quite regularly; not just to watch football or rugby matches, honestly. I have roast dinners as well. Seriously though, it's nice to see them properly because before I used to spend a lot of time in my room on the computer or PlayStation. At the same time, it's nice to retreat to my flat, which is calm and peaceful. Basically I have got the best of both worlds.

It felt like an eternity between the date I signed for the keys and when I was finally able to move in but it was certainly worth the wait in the end.

'Wheelchair Boy' is very happy in his new habitat!

Bye for now!

At last...

Nearly 4 months after I was given the keys, I am over the moon to finally say I will be flying the nest and moving into my new flat next Thursday. You all should be aware by now (if not, may I suggest you read some older posts) of the arguments my family and I have had with the council regarding the lack of fencing around the property. After months of not listening to our points, they have thankfully come to their senses and have agreed to put fences up as they can see the potential security issues of having an exposed garden. Although their change of heart probably came about because they have had enough of 'Wheelchair Boy' and just wanted to put the situation to bed. Either way, I am more than happy.

This move will be a giant milestone for me as hopefully the flat will be my home for the foreseeable future but it all feels very surreal. Probably because I've waited for so long but now a date has been confirmed for my bed and hoist to be transported over, I can begin to get properly excited. One positive to come from the 'fence saga' was everything is done such as decorating, adaptations, furniture is in and all the white goods are ready. My current bedroom is looking kind of bare, which is making me even more desperate to move out and start a new chapter in the book they call life. However, it's only a week so not long to wait.

I realise that I probably sound too eager to get out of my parents house and I apologize if it appears I am being ungrateful.  It's just I want to stand on my own two feet (ironic because I physically cannot). My mum and dad have done a marvelous job for 21 years but I would like to be as independent as possible for someone with Friedreich's Ataxia. I already have a team of carers so I am partly independent at the moment but having my own place will be the cherry on that 'freedom' (best to say that in a Scottish accent) cake. I will be able to do what I want (within law), whenever I please (apart from play music loudly after 10PM).

Bye for now!

Struggling with hotels…

My regular readers will be aware that, during the football season (August-May), I travel over land and sea to follow the Arsenal. We normally drive there and back in one day but if it’s a long distance away, we have to book into a hotel for the night. The furthest ground from St. Albans in the Premier League is Newcastle but luckily we got that fixture out of the way last weekend. However for the first time, I realised I probably won’t be able to stay in hotels anymore.

In the past, I have managed to quickly stand and twist to get in bed but now I cannot even manage that. The message is not getting from my brain to my legs, which is incredibly frustrating. I just end up shouting at my legs ordering them to work like a crazy person (reminiscent of a certain scene from the ‘Warwick’ episode of The Inbetweeners).  So it’s probably best if I avoid hotels from now on unless my OT can provide some sort of portable hoist.

While I am on the subject of hotels, I would like to wholeheartedly recommend the new Premier Inn on St. Peters Street if you are reading this and would like to visit the home City of ‘Wheelchair Boy’. I have not stayed in it but on Monday, I went on a ‘familiarization’ tour to check out the facilities for disabled guests on behalf of the St. Albans District Access Group (really, I just wanted to have a nose around).

I am pleased to say that it was easily the best Universal Access bedroom I have seen in a hotel. The room itself is huge, everything is at the correct level for wheelchair users and the bathroom is full to the brim with handrails (a very useful thing for those who can just about still transfer). Even the bed was height adjustable. There were only two things missing which would have made it perfect for me. A standing hoist and a clos-o-mat toilet but I doubt either them are going to become standard features in an accessible room any time soon.

My only suggestion is that Premier Inn adopt the same policy as Holiday Inn; they provide a carer's room free of charge.

Bye for now!

Writing partner WANTED...

I was going to simply put 'Partner WANTED...' but I realised that would suggest this post was about my (non-existent) love life when in actual fact it's about getting all my ideas down on paper. Basically, I have a bunch of cool ideas for potential TV shows but struggle to turn the initial thoughts into scripts. Take this comedy I have been working on intermittently for two years. I have all the plot lines mapped out in my head but when it comes to sitting down at the computer and opening the document, something comes over me. I thought it was just me being stupid but then I thought of great comedies I love such as The Inbetweeners and Extras; both had two writers and it makes perfect sense. You can bounce ideas off a co-writer and run things past them so that you don't end up going insane or with a script that no one else likes.

So if you fancy doing some writing with me, please get in touch. We could be the next Ricky Gervais and Stephen Merchant. You'll need to wear glasses and be tall as I'm obviously the slightly chubby one in this analogy. But seriously, I am looking for someone with a similar writing style to me (surely I can't be that unique) otherwise we will want to take the script off in completely different directions. Like I said, I think my ideas are genius but I struggle to convert what is in my head into a decent screenplay. I've not just got this sitcom in mind, I also have thought about doing a few dramas. On my 'to do' list, I have a few potential programme names but I really do not think I will ever get around to ticking them off on my own.

I know this post has been like some weird lonely hearts advert where instead of looking for romance, I have put the feelers out for an intelligent person who is interested in writing and has a GSOH. However, I haven't really done much lately apart from the football because the weather has been horrible and I do not like going out in the courtesy car (as I mentioned in last week's post). Hopefully though, my Venga will be back tomorrow.

Please pass this post on to anyone who might be interested in winning a BAFTA ;)

Bye for now!

Platform lifts...

The majority of people do not realise that nowadays putting in a lift is not difficult. Gone are the days where a shop could argue a building is too old for an elevator to be installed. I understood that companies used to not be able to install a standard lift in listed buildings because the law means that you cannot change the structure of those particular places.

However, platform lifts are readily available nowadays from sites such as https://www.tkencasa.co.uk/. They are not complicated and can be fitted anywhere (even in a basement nightclub in Benedorm) so the argument that it will involve a lot of building work no longer stacks up. The Jones Bootmaker store in St. Albans is a great example to illustrate this very point. Next used to say the building is listed and a lift can’t be put in.  Shortly after the premises changed hands, a lift suddenly appeared. Thus making the ‘listed’ argument defunct and one 'Wheelchair Boy' no longer accepts.

There are countless shops I have been in where the men's section is only up or down a few steps; not completely on a different level. I have taken my custom elsewhere but it would be simply overcome by a platform lift. It's not an unreasonable request because they can be installed on existing stairs and do not require a building to completely change. These 'mini elevators' are similar to portable ramps in that they are simple add-ons but improve accessibility tenfold.

So if you do own or manage a shop/pub/restaurant, I hope that I have encouraged you to buy a platform lift (https://www.tkencasa.co.uk/platform-lifts/). Not only is it the right thing to do but it totally makes sense from a business point of view. The purple pound (name given to the spending power of disabled people) is estimated to be worth £212 Billion but is often overlooked by businesses. A small investment in making your premises' accesible to customers in wheelchairs will be so worth it in the end.

At the same time, if you know of any buildings that could do with improving their access, please get them to read this post (as well as the rest of my blog of course).

Bye for now!

Added stress..

The ongoing fight for a fence to be erected outside my flat has been causing me a fair deal of stress of late (hence why I have posted about it a few times because writing seems to be a release) so I forgot to mention that I was involved in a collision last week. Thankfully, my carer and I were not hurt but it did shake me up as it was my first accident. The same cannot be said for my Kia Venga, which is currently off for repair. I just hope it is returned soon because the courtesy car I have is awful. To be fair, it didn't appear that bad. Just a new bonnet and light but saying that, I'm not a mechanic so there might be hidden problems that I could not see on the outside.

Obviously courtesy cars are not fitted with the Carony Classic so when my mum explained that I cannot transfer, Motability agreed that they would give me £50 a week for taxis. However, what with my busy schedule following The Arsenal, that would soon run out. I then agreed that, although I hated them with a passion, I would get a Wheelchair Accessible Vehicle for the short period my Venga was being fixed. On Saturday, a Peugeot Partner Tepee arrived from Scotland. Since then, I have only been out in it on a needs must basis because it has done something that I never thought was possible. I now dislike WAV's even more than I did before.

The ride is so uncomfortable in the back. Even-though I am strapped in securely with clamps, I still end up feeling every little bump in the road. As I've mentioned before, another problem with WAV's in general is that because the wheelchair position is at the rear, you feel out of the loop like a child and unable to join in with conversations. Particularly with my hearing and speech problems, I end up thinking that I may as well not be in the car. Then there are design faults with this Peugeot such as the seat belt, which is difficult to get on and once it is, it doesn't go across my shoulder properly like a  standard one. Also when the vehicle reverses, it makes a ridiculously loud noise (luckily I do not have epilepsy).

They are just a few reasons why I was right to get the Carony Classic over a Wheelchair Accessible Vehicle.

I cannot wait to get my Kia back (preferably before our trip up to Newcastle next Friday) so that I can re-take my rightful place riding shotgun in the front passenger seat next to the driver and more importantly, be back in control of the radio.

Bye for now!

I'm serious...

I think I've mentioned before how much I hate my voice and the speech part of my condition is far worse in my opinion than the fact I cannot walk. Being wheelchair bound obviously is far from ideal but it's not the end of the world. I complain a lot (as you may have noticed) about accessibility but in  the main, things are improving. Disability aside, I can still do a lot of simple activities such as going out to restaurants or to the cinema like able-bodied people. However, communication is a key part of what makes us human and having the ability to do that gradually removed is truly awful. I just feel degraded and less of a person.

People will either read them last couple of sentences and reassure me that my voice is fine (thank you but I know that it's getting worse by the day) or think that I'm being pathetic because at least I'm not a mute. That is normally how I deal with my condition. I usually think to myself that I could easily have a worse disability than Friedreich's Ataxia and while I am grateful that I can still speak, I am starting to feel like I might as well be non-verbal. A ridiculous statement I know but that is how various people including the council are making me feel of late. A worthless 'Wheelchair Boy' who should be ignored and forgotten until I die  (everyone would have a much easier life if disabled people were not around).

Some might say that I am being melodramatic but my life has been put on hold for nearly three months with this whole fence situation and I've had enough. My points make a lot of sense such as the fact my tenancy agreement states that the property is 'an exclusive flat with an exclusive garden' but still they will not listen. I went into the council offices today to get a few things off my chest but all they do is pay lip service and pretend to be concerned. I have another meeting on Monday but it seems so pointless at the moment. I know exactly how it will play out. They will patronise me by repeating points I already know and not take a single word I say on board.

What makes it worse is that I am the stereotypical bloke. I bottle up all my stress and worries, which I realise is not good for my heart. This saga HAS to be resolved amicably soon for the sake of my health.

Bye for now!