Thursday, 18 December 2014

A weekend in London...

So after months of waiting the weekend I was seeing Lily Allen live finally arrived! Me and one of my best friends Robyn bought tickets way back in August to see her perform at Brixton o2 Academy, London, the last night of her tour and planned to spend the weekend in London with my sister who lives there. Although I was very excited for the weekend, I did have some anxiety about leaving home for 3 days and being apart from my mum in case I got my call when I was there! Robyn and my sister Katy are incredible at looking after me though and I needn't have worried! We decided to travel to and from London by train and as I was taking my wheelchair I used my disability railcard and got a disabled seat in which to sit. The staff at the railway station were superb, as soon as we got onto the platform we were approached by the conductor who asked us which train we were getting so they were prepared to put the ramp out for us to get onto the train! We got on the train hassle free and then tucked into brunch, Robyn had been shopping the evening before and bought us a continental breakfast; croissant, brie, cheddar, deli meat selection, caramel ice latte's and fresh orange juice!
On the train with our brunch!
 It was delicious and filled the hole in our tummies ready for the afternoon! My sister met us at St Pancras station and we got a taxi back to her house where we unpacked and drank copious amounts of tea and demolished a pack of biscuits. We decided to eat out in Brixton village where there is a wide selection of quaint independent restaurants with flavours from all over the world! With this in mind and the concert doors opening at 7.30pm we decided to get ready at half 4 with the aim to leave by half 5 giving us plenty of time to get the bus to brixton, eat and then get to the academy!
Getting the bus to Brixton was my first experience as a disabled person on a London bus and I must say I wasn't particularly enthralled by the experience. In London the buses have a front door entry, middle door exit policy ensuring you pay on entry by the driver. However, the wheelchair access ramp is located at the middle doors and so I had to wait for everyone to get on the front door and exit the middle door before I could get on. My sister had to pay for the 3 of us at the front door and ask the driver to put the ramp out for me and Robyn who were waiting by the middle door, much to my horror, it is a less than discreet affair, but rather a flamboyant display of flashing lights, an alarm and a womens voice over shouting 'WARNING, DISABLED RAMP ACCESS' for the duration of time it took to get the ramp out (20 seconds) which felt like a life time. The whole process ensured that if everyones eyes weren't already on me for being in a wheelchair, then the hullabaloo of getting the ramp out made sure they now were. Robyn pushed me onto the bus and placed me in the wheelchair area which faces the back of the bus, so basically everyone, ensuring even more stares, fantastic. I gritted
 my teeth and bared it though knowing that this was the first of many bus journeys of the weekend and that I needed to be grateful for my wheelchair as I wouldn't be able to be in London without it.
In my wheelchair on the bus which I hated
After a walk (wheel) down Electric avenue past all the market stalls brimming with exotic fruit and veg from around the world and lots of smelly fish we arrived at Brixton Village. We lapped the market a couple of times looking at menus before deciding on a place called 'Wild Caper' a mezé restaurant. We each ordered a hot and cold mezé to share, homous, falafel, tatziki, flatbread, chicken skewers etc!
The delicious food!
Me and Robyn
We arrived at the o2 at just gone 7pm where we managed to skip the humongous queue and make our way straight to the priority access doors. I had spoke to them the day before on the phone and arranged priority access due to not being able to stand for long and ensure I got a seat in the first come first serve seated area. I didn't book a disabled seat as I wasn't taking my wheelchair in the venue with me and didn't want to take up a space for a wheelchair user. However, when me and Robyn got into the reception area, the girl at the box office who I'd spoke to on the phone said they had loads of disabled seating which had much better views than the general seated area and so offered us to sit there instead! We jumped at the chance and were chaperoned into the concert hall and given the best seats in the house! Not only that we were the first 2 people in the hall, we got to see them putting all the set together and a man abseiling down from the ceiling with wires before the put the black sheet over the set to hide it while the support act performed. We were in there alone for a good 15 minutes and we later found out we had been let in too early by mistake! Never mind!
Getting a sneak peak at the set as the first one in the venue!
Slowly the room started to fill up as they let people in until at 8.30 it was heaving and excitement grew as the support act took to the stage. They were a band called 'Fryars' who I decided I would like to listen to at a summer garden party, they had really chilled out atmospheric vibes. At 9.20 a huge wooden barn with a manger in the middle was wheeled onto the stage, I straight away knew Lily was wrapped in the sheet in the manger! The rest of her band came on dressed as various nativity parts before the music started and out of the sheet came Lily singing Sheezus! The whole concert was amazing with highlights being her singing 'somewhere only we know' from last years John Lewis christmas advert in which she bought the school choir on stage with her and fake snow fell on them as they sung! The other was when she sang 'it's hard out here' one of my all time favourite songs of hers, I sang my heart out to it with my oxygen on to help! By the end of the night I had a warm fuzzy feeling of happiness and couldn't wait to get into bed ready for Saturdays antics!

We awoke on Saturday to blue skies and sun, perfect weather for our plan to go to the top of the shard! After a full english for our brunch Katy, Robyn and I set of (by bus again) to the Shard and borough market area. We had pre-booked tickets to go up the shard at 1.30, we arrived and were met with insanely polite and on the ball staff who couldn't have been more helpful if they tried. I also think I got told to have a wonderful day over 10 times! I suppose they are ambassadors for London though so they have to be friendly and well mannered! It took 2 lifts and less than 3 minutes to whizz us up to the 69th floor where the indoor viewing platform is situated.

The Shard
Admiring the views with my sister
The view of 'city'
The views really were magnificent and we couldn't have had better weather if we tried! The whole of London was crystal clear beneath us and we were able to spot all the landmarks! I would have liked a drink up there but with champagne being the only option and the cheapest glassful being £10, I gave it a miss! I suppose being sky hight means sky high prices! We got the lift up to the 72nd floor where it was the outdoor viewing platform, it wasn't that outdoors though, you still had glass all round you but their was no roof so you could feel the breeze on your heads! After 45minutes of ooo'ing and ahh'ing we got the lift back down to the gift shop where I bought a selection of post cards, one to send to my brother and the others to put in my bucket list book! Feeling peckish, we headed across the road to borough market where I had a seafood and chicken paella and a mulled apple and elderflower drink, it was enjoyed whilst listening to carol singers, very festive indeed! Once we were refuelled with energy we got onto yet another bus to Liberty of London (for those who don't know, it is a department store that sells independent designer hand crafts/clothes/fragrance/jewellery). I've always wanted to go to Liberty to visit their haberdashery and this want to go only increased after watching the documentary series on channel 4 this Autumn about the shop!
Flower display outside Liberty
When we arrived it took us a while to find a wheelchair friendly access door, 3rd time lucky! We were met with the scarf hall upon entry and lusted over the beautiful silk prints until seeing the 3 figure price tag! We decided to head (like most people) to the christmas shop which was on the 4th floor, hurrah crowed lift time! We piled into a lift where I felt like a dwarf among giants, sat in my chair I was surrounded by bottoms, I just hoped nobody let a fart out into my face, I was lucky and they did not, the big bums did brush all over me, no so lucky or nice. The christmas shop was heaving and difficult to get around with the wheelchair, narrow isles and crowds don't go well! If I'm honest it was a pretty disappointing display, I saw nicer decorations in Wilkos and B&Q! We managed to escape the hustle and bustle for a minute or 2 whilst finding a lift to take us down to the 3rd floor haberdashery and gift area. Another claustrophobic lift ride and we were in my kind of heaven, shelf upon shelf of beautiful fabric and sewing accessories there was no way I couldn't buy! After much browsing and deliberation I decided upon a measuring tape, sewing scissors, a new set of needles and bought 1m lengths of 2 different fabrics I fell in love with (the most expensive fabric I have ever bought) I will be using them for something special for myself, what that will be I'm not quite sure yet!
My Liberty purchases
We got a final lift down to the ground floor where I suffered some wheelchair rage; to me lift etiquette is letting people out before entering but as the doors opened people started to charge into an already packed lift before I loudly stated (possibly shouted) 'It's very rude to not let people out before you get in' to which people moved out our way so we could get out. We left Liberty and I must say I breathed a sigh of relief, as much as I enjoyed looking around it was a very claustrophobic experience that was only okay for a short period of time! We then had a mooch up Carnaby street to see the christmas lights where my wheelchair rage struck again as a women stopped abruptly in front of us and only moved when I shouted 'EXCUSE ME' at her! She probably didn't deserve such a short remark but I was at the end of my tether with the days wheelchair antics from buses to crowds to lifts I was not a fan of this disabled malarky!
Carnaby street lights 
A final bus back to my sisters and I was able get out my wheelchair and relax for the evening! My sisters lovely boyfriend Nile made the 4 of us a scrummy chicken, vegetable and chickpea curry which was well deserved after such a busy afternoon!
Yummy dinner!
We stayed up until almost midnight chatting before my eyes could barely stay open and I insisted I must go to bed to ensure I could enjoy Sunday!

After a much needed lie in on Sunday we rose from our slumber at 11am! Another full english brunch  to line our stomachs, we headed off (me in my wheelchair with water bottle and fleece blanket) for a leisurely walk along the Southbank to see the christmas market! We passed the London eye and watched a few street performers before settling ourselves at the rekorderlig cider bar with mulled cider! After a mooch around the stalls the temperature started to drop and it was beginning to get dark so we got yet another bus back to my sisters for a cracking roast dinner, chicken, sausages and all the trimmings as well as a glass of mulled wine!

Beautiful Sunday roast dinner
Our train home was 9.30pm so a final bus ride (phew) and the most dramatic to the station it was. Basically I was sat in my wheelchair in the designated space when a women got on and stood by the pole right by me and stared me up and down continuously, me truly fed up of being in my wheelchair by this point was not impressed with her staring so gave her a rather disapproving look (which I have been told in the past are rather deadly) let's just say she didn't take kindly to this look of mine and sneered 'what's wrong with you' before moving up the bus to sit down, well Robyns eyes bulged out her face in fury and my sister whipped round and questioned the women on her rudeness to which she stated I pulled a horrid face at her which my sister defended by saying she had being staring at me so of course I wasn't going to be pleased, the women continued to have a bee in her bonnet and said that just because I'm disabled doesn't mean I'm a nice person. At this I could see Robyn have to hold herself down to stop herself turning round and punching her one. Luckily the women got off the bus after a few stops and as soon as she left Katy, Robyn and Nile shrieked in anger and I got even more frustrated with my disabled situation! Luckily that was the only proper negative incident of the weekend but all the same it was horrible. Anyway less of the negatives, we arrived at St Pancras and got on our train in 1st class, yay, free tea and biscuits and well as a chocolate feast we had took with us! I was exhausted and dozed the whole way home! My dad met us off the train and gave me the biggest hug, I was so happy to see him! My mum was waiting in the car in the pick up area and I was so excited to see her too! We dropped Robyn home and by 11.30pm I was home and happier than ever to be in my marshmallow bed knowing I didn't have anything to wake up for Monday!
I have spent the last 3 days in bed recuperating, it may sound excessive to most but I was so drained after London, even though I was pushed in my chair I can't explain how utterly exhausted I was. I could barely stand up on Monday, Tuesday I was a bit more awake but stayed in bed for the day, today I've felt brighter, I got up at 2! I'm still not great, my mum helped me bath and wash my hair, yes at the age of 22 my mum has to help me wash myself and wash my hair because it is too exhausting to do myself, it's something I've just had to accept although I'm sure most 22 year olds would be mortified by it. I suppose I'm lucky I'm so close to my mum and don't mind her helping me, I'd rather it be her than a stranger!

I have few plans for the next week as looking after myself and getting back to 'good' health is my main priority! I am going for a meal at the pub with a friend on Friday evening, I have a christmas 'surprise' from a friend on Saturday evening, Monday I am getting my hair done and then it's just spending time with my parents for christmas before my sister and Nile join us on the 27th!
Holly x





Friday, 5 December 2014

And then there were 3...

Life at home has changed substantially with the departure of my younger brother for his Austrian adventure working as a chalet boy in the alps for the winter season. He left on November 28th and won't return until April next year! 5 whole months! In anticipation of his departure we decided to celebrate christmas early as a family the weekend of the 22th November. My sister and her boyfriend came up from London to stay for the weekend so there was the 6 of us celebrating christmas on the Saturday and boxing day on the Sunday! It was agreed we would exchange presents with my brother but leave the rest until 'real' christmas! Christmas of course would not be complete without a christmas tree so me and dad, slightly earlier than usual, went on our annual trip to B&Q to pick the perfect tree! This year was we were rather quick at picking, we only got 5 trees out their net and spent an hour deliberating before we agreed on a 7 foot Norwegian Fir specimen! The lady on the till proudly informed us that our tree was the first one they'd sold that year! 

My dad holding the tree for me to inspect
The chosen tree!
The tree all decorated with presents under!
With our free popcorn!
The table all set with napkins, crackers, apple and cranberry sauce!
Cute reindeer and tartan designs
6 perfect dinners
My brother!
Me eating my first sprout!
My sister very happy with her wine, sprout and pig in blanket!
Cracker tug of war...my brother won!
Big smiles, our last photo together before he left!

On Sunday, 2 days after my brother left I was really missing him and had a lazy day in bed watching Netflix, I didn't venture down stairs until gone 5pm but I'm so glad I finally did because look what I found...
A huge knitted hot air balloon complete with little knitted Holly in the basket!
x
When we got home and told mum this nugget of information she was mortified; we don't usually put our tree up until the week before the 25th December! Anyway, we ploughed on with the festive preparations and the tree was up on Friday 21st ready for the big day on Saturday! 

Friday night (christmas eve) was spent with my brother, we went for dinner at Nandos before going to see the Mocking Jay part 1 in the pish posh directors lounge at the cinema! 

My sister and boyfriend arrived midday Saturday enabling us to have a lazy morning! Once they arrived we had a brunch before beginning dinner preparations! We all mucked in whilst christmas music played (essential) and the wonderful smell of cranberry sauce wafted up our nostrils teasing us of the delights to come! Dinner was served at 4pm ish, the table set with christmas napkins and crackers (of course)! The dinner was heavenly, I thought I'd done the eyes bigger than my belly mistake in my excitement but it was so delicious I polished off the lot! The crackers were a jolly affair, standard cracker jokes that you can't help but let out a giggle to before cringing! Brain teasers, 20 questions and a lively selection of charades, that involved me getting up from my seat running and jumping in the air with my arms spread wide, their first guess was titanic but after a few more demonstrations they finally guessed dirty dancing! Hurrah! 

After dinner the exchanging of presents began! We all gave my brother his and he gave us ours from him, he was sat with a huge pile it was quite comical! I was lucky enough to have got given a dream journal (to record my wacky dreams in whilst he is away as he'll miss me telling him about them each morning) and a set of stamps in the shape of scrabble letters, very useful for my crafty side! Me and my sister bought him a polaroid camera and travel journal to document his experience in! He was chuffed to bits with it! We then obviously had to take a family snap in front of the christmas tree with the polaroid as his first photo for the journal! After lots of shifting positions Katy's boyfriend snapped 


a terrific shot of our Christmas 2014!


On my brothers last night we went out for dinner at the Italian restaurant 'ASK', we had a delicious meal before heading down to our local pub for his leaving drinks with our friends! 
Once again my 3 crazy daisy knitting ladies succeeded in their quest to make me smile!The house is much more quiet with just me and my parents, but it's nice to spend quality time with them. Over the last 2 weeks the combination of IV antibiotics I've been on was what I call 'my favourite' due to the lack of side effects, my increased appetite and most importantly raised energy levels. Those 3 crucial things meant I was able to get out of bed at a reasonable hour, feel positive and get cracking on being creative and helpful! I've also being able to take charge and cook dinner on a few nights to give my mum a well earned break. Having the opportunity to do little things like that mean so much to me, my mum does so much for me being able to give a little bit back is a nice. I'm also so proud of myself for actually following through and completing a goal I had. You may remember I wrote about wanting to make cards and sell them at craft fairs or on etsy, well I've made all the stock, I have 40 handmade christmas cards to sell at a craft fair next Thursday! I think I am going to sell them for £2 each and donate 25% of that to the cystic fibrosis trust. The money I make from the cards needs to cover the cost of materials I used to make the, a donation to the CF trust and a small amount for myself. I'm really excited to see how it goes. Any left over cards I am going to try and sell on Facebook or maybe save for next year as I realise it's already December and I may be a bit late off the mark and most people probably already have their cards to send! You never know though it's worth a try! Within these 2 weeks I have also managed to get all my christmas shopping done granted the majority I did online from the comfort of my own bed but I did manage a trip to town, minus my oxygen and wheelchair, walking at a very slow pace round the few shops I needed to visit to get the last few bits I was unable to buy online. Only problem with online shopping is that the presents are delivered and it is normally my mum who answers the door to them. So for the last week whenever the doorbell goes I shout I get it and make my way to the door as quickly as my lungs let me to avoid any surprises being ruined! I had a clinic appointment on Thursday, which went as well as I could have hoped, they are pleased that I am staying at a constant level of health with the permanent IV antibiotics and feel confident they are working. I need to get a bit more stuck in on the exercise front, so have arranged a trip to the hospital gym next week with my Physio to focus on core strength and building muscle, both crucial in a speedy recovery from transplant! My weight was lower than what I would like, when I went to newcastle with my false alarm my weight was 41.5kg, which is terrible, they want me to be at least 46kg so since the false alarm I have knuckled down and been ng feeding overnight every night as well as trying to eat as high calorie diet in the day as I can, it's paid off as my weight yesterday was 43.5kg so I've managed 2kg in 2 weeks. I just need to continue what I'm doing, not get complacent and hopefully I'll be back up to 46kg in no time! Like my doctor said, with my weight, I'm walking up a downward escalator, as soon as I stop walking I go down, meaning as soon as I slack of from intense feeding and eating, I lose weight. Its a constant battle I have to fight. It will be worth it though when I get my new lungs! Oh and I'm not complaining if the increase in weight means a bigger bottom and boobs! I am going to spend this weekend like santa's elf wrapping all my presents up, I go a little overboard with ribbons, bows and gift tags, but y'know if you can't be flamboyant at christmas then when can you?! I am also looking forward to going for lunch with Isla my goddaughter and watching her sing christmas carols at my local supermarket with the drama group she attends! I'll leave you with the thought of me right now, sat in bed, christmas yankee candles burning, my mini christmas tree glowing and selecting a christmas film on Netflix to watch will drinking hot chocolate and eating gingerbread biscuits! 
Holly x