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!