Merry Christmas & update!

Well, i haven't updated this thing since...June??
Before i start making up excuses for why i've been so neglectful, i'd like to wish you all Merry Christmas! Hope you are all full of turkey, chocolates & alcohol and i hope Santa was kind to you all! He was very kind to me, or should i say my family was! My mum bought me tickets to see JLS on their tour next year, the new Man United away shirt with my future husband (i wish!) Jones on the back, loads of clothes, dvd's, 3ds games, makeup & a ton of other stuff! I also got spoilt by the rest of my family, i got money, more clothes, more makeup & loads of chocolates! We had fun on Christmas morning when my dog decided that she wanted to open everybody's presents as well as her own, ungrateful or what!

Now then, why have i neglected this thing?? I don't know. I have been quite busy for the last two months but apart from that i don't really know why. It's probably because i feel like i don't have much to say & then suddenly 6 months have flown by and i have quite a lot to say!

I've been really busy with the drama group that i go to, we're doing a show at The Lowry in January, so we've had lots of rehearsals leading up to Christmas & we've got more next week. It's only 13 days until the first night of the show, it's come around so fast, feels like yesterday when we got the script for the first time! I'm really nervous but really looking forward to it, i just hope i don't massively fuck up, drive my wheelchair off the stage or get stuck in the curtains, these kinda things happen to me, if they are going to happen to anyone it'll definatly be me.

Crazy things always happen to me, i suppose it just makes my life which would otherwise be a boring and repetitive routine a tad more interesting, everybody likes a little adventure every now and then don't they? The incident which sticks out in my mind is the one which occured at our corner shop. I'll tell you about it because it'll probably make you laugh..at me. Obviously, being in a wheelchair makes the stuff most people take for granted a lot more difficult for me. This includes going into a shop which has a step. I was around 9 years old when this happened, when my friends used to go to our corner shop to buy sweets, i always had to sit outside in my wheelchair and wait for them because the step was too high. One day, i was minding my own business waiting outside the shop & the son of the shop owner came outside to see if i wanted anything, he felt sorry for me because i couldn't go in the shop so he gave me a free bar of chocolate. The next day i went back, hoping for another free bar of chocolate, the man came outside to me again & told me that he was going to build a ramp. I was so excited at the thought that i'd actually be able to go inside the shop instead of looking like somebody just dumped me outside. Around 3 weeks later the ramp was done & i couldn't wait to try it out. I persuaded my mum to give me £5 as this was a huge milestone...i'd never been in the corner shop before, it was a big deal!!! Anyway i got to the shop with my friend & there was the ramp, "WOW" i thought. My friend went up the ramp 1st to open the door & i followed her, all was going well and then suddenly but in slow motion i could see the sky. Yep the ramp was too steep & i went head over wheels, backwards. I was stuck on my back, my legs were up near my chin and i felt like a beetle, probably because i looked like one. It took a few seconds (felt a lot longer) for my friend to realise i was no longer upright, infact i was almost upside down. A few seconds later, the shop owner came to the door, he's a really tall, old, indian man, he didn't look to impressed. He just stood staring at me as if to say "Are you just gonna stay there all day"...well yes, if somebody doesn't bloody help me! Anyway his son came out of the shop & another passerby came and helped to lift my wheelchair up and then got my legs out of the awkward position which they were in. When i got home, my mum was waiting to see what i'd bought from my 1st visit to the shop, when i told her what had happened i thought she was going to collapse from fright. I'd had my spinal surgery only 6 weeks before so the first thing she was worried about was if i'd done any damage to the metal rods in my spine, luckily i was fine, just a slight bump to my head!

We've since found out that a ramp must be 1 foot long for every 1inch. Also, i've never been back in that shop funnily enough.

Sorry for getting distracted by that story, anyway, what else have i been up to, well i've still been going to the football matches at Old Trafford, i witnessed the 6-1 defeat by the noisy neighbours Man City & was in a foul mood for at least a month. I attended the Manchester United annual dinner & had a lovely five course meal, i met Gary Neville whilst i was there & i also met him a month before this at his book signing. I also met Phil Jones & Chris Smalling after being invited to meet them at Francis House Childrens Hospice, i was over the moon when i got the phone call to ask me if i'd like to meet them! Phil Jones, even though he'd only just signed for Manchester United a few months before this had quickly become my favourite player. Seeing him & Chris Smalling walk into the garden of Francis House, i just couldn't stop smiling, they gave us all a Manchester United pendant & signed them and they also signed shirts & had photographs taken, it was a really special day which i'll never forget. My photograph was taken by a Manchester Evening News photographer and a few days later it was in the newspaper!

Healthwise i've been good lately, i've had a few stomach bugs and a bit of a cold but nothing too bad (touch wood). My DLA is due to expire in April so the past week has mostly been spent filling in lots of very repetitive pages of questions about my ability to walk (none), how far i can walk before i feel pain (erm, as stated above, i can't walk ATALL!), how often i suffer from falls...(i was tempted to tell them the story about the ramp at the corner shop) and lots of other questions about every aspect of my life, including wiping my arse. I had to get a supporting letter from my consultant about my disease & how it affects me, i recieved a medical report from him last week which should be enough for them to understand my condition. Living with SMA everyday, this probably sounds weird, but i kind of forget how serious my condition is, i have to, if i thought about it everyday i'd spend everyday worrying about what could happen tomorrow, or which muscles i'll still be able to use in the near future, when my next pneumonia will be or whether or not this time next year i'll still be able to eat normally. I can't think about those things everyday, those thoughts do run through my mind mainly at night when i'm in bed & i cannot move atall, that's when i feel most vulnerable. Anyway, the medical report which my consultant sent to me really reminded me in black & white of what my conditon means for me, the words which stuck out at me were "devastating, progressive muscle wasting" and "uncertain future" anybody would find that slighty frightening, even though i have had this disease all my life & have known how serious it is ever since i was old enough to Google it, it's still frightening to read. If you know me then you'll know that 98% of the time, i'm happy & the glass is always half full, 1% of the time i am pissed off because United dropped points & the other 1% is when i'm having a bad day, but don't we all have one of those occasionally?

This post has taken me two nights to type & now i think i'm getting RSI in my wrist! I'm not gonna sign off by saying that i'll update this thing more often because i'll fucking forget. Okay, bye x

Sorry, i did it again!

How long has it been this time, 6 months!! God sake, i'm so rubbish at keeping this thing up to date! Well i'll try harder in future haha!!

What have i been up to for the past 6 months, erm, basically being a Manchester United fan! It's a full time job ya know!!

It's been an incredible season with lots of ups & downs and plenty "squeaky bum time" moments but it was all good in the end! If you would have asked me what i wanted at the beginning of the season, i would have said "to knock the Scousers off their perch" and that is what we've done!! It would have been amazing to beat Barcelona at Wembley but i suppose it wasn't to be, they were unbeatable on the night but i think we'll get them next time.

I was lucky enough to get tickets for the Champions League Final, i'd never been to Wembley before and i was so excited. After 6 hours stuck on the coach on the motorway, i was so happy to see the Wembley Arch in the distance. My mum came with me & we had a great day, even though the result wasn't what we wanted it was still an experiance i will never forget. The journey was a bit much as i was ill on the way home, it really took all my energy & i have never been so happy to get in my bed! We got home at 3am & i stayed in bed until 2pm the following day!

Now the football season is over, i can't wait for it all to start again! I miss going to The Theatre Of Dreams, i live & breathe United & feel lost without it!! I've recently joined Twitter & can't believe the amount of support i've recieved from fellow Man United supporters, we really do have the best fans in the world!

Let's enjoy being the Champions of England & enjoy sitting on the Scousers perch haha!

Merry Christmas!

Merry Christmas everybody! (5 days late but it's better late than never!) I hope you all had a great time and have a fab new year!

I've done it again, forgot to update my blog...for 4 MONTHS!!! Last time i posted, i told you that i had recieved confirmation about my wheelchair and that it was on its way. Well, i finally recieved it on 13th October and i LOVE it!! It took me about a week to get used to driving it, i've never driven a front wheel drive wheelchair before and they told me it could take a while to get used to. I've been driving it for almost 3 months now and i dont think i will ever want to drive a rear wheel drive again! Everything is so much easier in this chair and it is so much more manouverable, i can easily drive and turn in small spaces, it's great! I'm still getting used to the standing function, they told me to take it slowly as i've never stood before. The first time i stood up, it felt really weird, i had to sit down after a few minutes but now i can manage around half an hour! It feels so good to be able to stand up, it allows me to stretch my legs and my hips and it just feels great!

Healthwise, i haven't been too good lately, i had the flu about 2 weeks ago. I went to see the G.P because i had a really bad sore throat, fever and was really tired (my usual G.P wasn't there so i had to see a different dr), he examined me and said that i had the flu. The G.P that i normally see, gives me antibiotics straight away but this one said "the flu is caused by a virus so antibiotics won't work". So i went home with his advise to drink plenty of fluids and get plenty of rest. This was on the Monday and on the Wednesday i had an appointment at the hospital for my 6-monthly check-up with my respiratory consultant and my neuromuscular consultant. By the time i got to the hospital i was still feeling ill and had started coughing up green stuff. As soon as my Dr's seen me they weren't happy that my G.P hadn't put me on antibiotics and they prescribed me some straight away. They explained to me that even if it is a virus, i still need antibiotics because i don't have much "respiratory back-up" so if it did turn bacterial it would turn nasty very quickly. I started my antibiotics as soon as i got home and i improved every day. They want to see me again in 3 months. I was worried that i might have been poorly for Christmas but i wasn't!

I had a good Christmas and ate so much food! I spent Christmas at home with my mum and my grandparents. I got lots of presents, my mum bought me the new Manchester United shirt! We didn't go out much over Christmas because we had so much snow! It's finally gone now, i just hope it doesn't come back!

I hope you all had a good Christmas and have a fab 2011!

Exciting times!

Well, i have good news!... My new wheelchair is on it's way! We recieved the long awaited news on Friday 6th of August that the charity we applied to (Caudwell Children) were kindly funding 80% of my nearly £19,000 chair! I was over the moon, it felt like i had won the lottery, i'll be forever grateful to Caudwell, if it wasn't for them i could only dream of getting this chair. The remaining 20% was partly funded by my wheelchair voucher from the NHS and my Nanna kindly paid for the remaining £800.

On Monday, i was measured up and the final order has been made. I received a letter yesterday from the suppliers of the wheelchair to say that the estimated date of delivery is 04 October 2010. I'm so excited, it'll totally change my life and give me much more independance.

My favourite time of the year is also here and that can only mean one thing...FOOTBALL! Yes, the football season is back underway and we have another long exciting season ahead. I was back at Old Trafford for the first game last Monday night which was against newly promoted Newcastle where we had a convincing 3-0 win. For me, there is nothing better than sitting in "The Theatre Of Dreams" and watching the best team in the world, Manchester United. We had a frustrating weekend, only managing to draw 2-2 with Fulham but with West Ham next in line at Old Trafford, i think we will make up for that disappointment! I'll be there on Saturday cheering them on, lets just hope i don't end up with a sore throat like last time!

Well that's all i have to say for now, i'll update soon, hopefully with pictures of my new chair!

Hospital went smoothly!

Hi, just a quick update to say that my appointment in the chest clinic on Wednesday went really well. My doctors were really pleased with me and all my blood gases (oxygen, waste gases etc) were all perfect! This means that my bipap is doing it's job and keeping me healthy. I don't have to go back to the clinic until December unless we have any problems. No more hospital appointments this month!

Still no news on the wheelchair, my mum contacted them yesterday because we were getting slightly worried, it's been nearly 4 months since we applied for it. They said my application is due to be looked at any day now and a decision will be made. I'm quite anxious about it, if i got this chair it would absolutely change my life and give me so much more independence and confidence, i just hope they say yes, getting this chair would be like winning the lottery to me, it means so much. If they do say no, it's going to take an awful lot of fundraising to raise £18,000 and i don't know if that would be possible.

Anyway, think positive and positive things will happen...

Update

Hi everybody. I'm sorry it's taken me so long to post on here (3 months!), i did say when i first started this blog that i would update it regularly but it kept slipping my mind and i haven't really had much to post about.

In my last post, i told you all about my dog Sparky who sadly had to be put to sleep. Well we now have a new dog called Poppy, she is a Jack Russell Terrier and she is now almost 13 months old. We got her a week after we lost Sparky. One of the neighbours heard about us and came knocking on our door, she told us that her daughter had a 10 month old Jack Russell but she is a nurse who works 12 hour shifts so she was unable to look after her very well as she was out of the house all day and she wanted the dog to go to a good home where she could have a happy life. We said we would think about it as we were still very upset about Sparky. After thinking about it for a few days, we all decided it would be a good idea to take in this dog. After having a dog live with you for 16 years, it suddenly feels very strange not to have that canine company around! Even though we loved Sparky very much, and always will, we still had room to love another. If we didn't take Poppy in, she probably would have ended up in a shelter and that is an awful thought!

Poppy has settled in really well. When she first arrived, we all thought "Oh My God, what are we taking on!" because when her owner brought her to us, she was running around the house CRAZY! Nobody could catch her and she left a blanket of white hair behind her everywhere she ran! Her owner was very upset to be letting her go, in fact she was devastated, she cried the whole time she was here! Now we all know why she was so upset, Poppy is the most loveable dog ever! She is so happy with us, we have a huge garden which she LOVES, she chases all the birds, flies, bees, bugs and she was even chasing a toad yesterday! She loves having cuddles and kisses and always sits on my knee. She knows that she has to be gentle with me and she even knows that my left arm is the weakest so she always comes to the right hand side of me so i can stroke her, what a clever girl! After 3 months with Poppy, i am so attatched to her, i absolutely adore her!

Last time i posted, i also told you all about my problems with my wheelchair. Well it got fixed for just over £300, but it's still very "dodgy". I just do not trust this wheelchair atall and have no confidence in it what so ever. It is so unstable, especially outside if i am driving on an uneven surface, the chair just slides! Hopefully, i will be getting a new, much better chair. The chair i am hopefully getting is recommended for people with SMA. It is an amazing chair called a Balder, it does EVERYTHING, stands up, lies down, tilts back and forwards, rises up and down, has elevating leg rests and many other functions. I had a trial in one a few months ago and it was AMAZING, i could actually drive outside effortlessly! The man who brought the chair for me to try could actually tell how much my wheelchair has affected my confidence just by the way i was driving the new one! I was driving it as if it was going to slide at the least uneven surface. After he reassured me that this chair could drive over almost anything effortlessly, i relaxed and was amazed by it. The only problem is the cost, it isn't cheap, £18,000! There is no way i could afford one, it would take me about 50 years to save up that much! So, i have applied to a charity who funds this kind of thing to children/young people and we are just waiting for the decision off them. Everyday when the mail comes, i can't wait to get my hands on it to see if the letter has arrived. This chair will truly change my life, so fingers crossed they say yes!

Healthwise i've been pretty good lately eventhough I had a chest infection about 4 weeks ago and was on antibiotics for 2 weeks, but no hospital - YAY! As i've got older, we've really started to manage my chest infections much better, instead of spending up to a month in hospital struggling to breathe, we can now cope quite easily at home and only end up in hospital if things get really bad and i am relying on my Bi-Pap. The cough assist has been a godsend, without it i definatly would be in hospital everytime i get a cold. I'm at the hospital next Wednesday to see my respiratory consulatand and my neuromuscular consultant for my 6 monthly check up and to check that everything is fine with my Bi-Pap, hopefully i won't have to have another sleep study but who knows, my consultants are very keen on keeping a check on EVERYTHING so i wouldn't be suprised if they want another one.

I'll try and keep this thing updated more often! I promise!

A bad week...

This past week has been really quite stressful. On Thursday, i went for a walk with my nanna to the shops, we had a look around the shops and then got some chips before making our way home. That is when the problems started. On the way home, my chair felt so sluggish and slow, i felt like it was going to stop! The walk normally takes us about 30 minutes, but after an hour and half we were only halfway home. We decided it was useless for me to keep driving it, it was going at snails pace and it was dangerous to cross the roads because it was taking so long, my arm was so tired from having to push the controller extra hard so we decided to stop and phone home to get my mum to come and push me home. Just as my mum was about to come to rescue me my uncle arrived at our house to visit us and he said that he would come and get me instead. He pushed me all the way home, i've never been so relieved to get home!

When i got home, my mum phoned the wheelchair centre, they arranged for the repair man to come out the next day. It was time to get the old wheelchair out (15 years old and it still works- just!). I hate using my old chair, it is just a basic powerchair and has no special functions such as the elevating legrests which i miss so much! On Friday the repairman arrived, he had a brief look at my chair but he said he would need to take it away to test the batteries, motors etc. We asked him how much he thinks it would cost to repair and he said he had a feeling the motors were the problem, they are £100 each but he said if it is the battery as well then we would be looking at a grand total of £500 maybe even more! Things always seem to go wrong at the wrong time! I'm supposed to be getting a new chair in a few months so we were hoping that this chair would last out until then. Now we had to wait for him to phone back to say exactly what the problem was.

We got the call on Saturday...good and bad news! The good news? The motors are fine! The bad news? The batteries need replacing, along with the tyres. He said the chair will be back with me by Tuesday (today) and it would cost £300. I was relieved that it wasnt going to cost £500 like he said it could and was glad that i could have it back soon.

On Monday, me my mum and nanna decided to go to bingo. My old powerchair which i was using would get me from A to B so we decided to go out. Everything was fine and then at 11.30 a.m my nanna got a phonecall off my grandad who was at home. Our Yorkshire Terrier had a seizure. He had sufferred from these seizures from being a puppy which have got a lot worse as he got older. He also had lots of other problems, his ears needed to be bathed twice a day with salt water & vinegar as they were always infected and he had lots of tumours in his ears (which we were told were non cancerous), he was deaf, nervous and also started to wee in the house at night. After he had that seizure my grandad took him to the vet (i didn't know), the vet said that the kindest thing to do was to let him go.

On the way home in the car my nanna told me, i was upset but managed to hold it together until i got home. He wasn't there, he didn't jump up on my knee, his food bowl was still full, his buscuits were still on the floor...he was gone. My grandad asked me if i wanted his collar, he gave it to me and the tears started streaming down my face. I just wish that i had the chance to see him one last time to say goodbye. He was 16 years old and we had him since he was a puppy (i was 3 when we got him) so its so strange not having him around, he was the best dog ever and i'll never forget him.

Today i got my chair back, as soon as the man walked in the first thing he said was "where's the dog?" He was always there, sat on his cusion on the couch. I feel lost without him, i'm just happy he isn't suffering anymore and hopefully he's in doggy heaven.



Sparky 05/July/1994-01/March/2010 R.I.P