Happy Birthday Grandad!

Tomorrow, the 19th August, would have been my grandads Birthday. He sadly passed away last year after a major heart attack. It's SO hard knowing that i'll not be able to celebrate his Birthday with him. I'd give anything to see his face one last time and let him know how much I loved him. He was the best grandad anyone could ever wish for; yes we had our differences and he didn't understand my ilness but he always cheered me up when I was feeling down and I knew he cared deeply about me and for that, I could never, ever thank him enough.

It was my nanans Birthday today so I went to see her. My nanan and grandads Birthday are a day apart and they were the same age for a day!

We took my nanan some flowers and whilst we were visiting her, my cousion, aunty, uncle and cousions kids came. I hadn't seen them in a while so it was nice to see them. They brought some flowers for my grandads Birthday wish we went and put in the garden. When my grandad died, my nanan scattered his ashes in the garden and we got a rose bush that we named after him. His favourite place was in the garden so it made sense to scatter his ashes there.

It was SO hard laying the flowers. I think it hit us all that this would be his first Birthday that we wouldn't be able to celebrate together. We always did something on my grandads Birthday so it was so hard knowing that we wouldn't be able to this year.

Whilst my nanan and I were sat in the house, some of her cards kept falling down. It sort of felt as though my grandad was letting us know that he was still here with us, wishing my nanan a happy Birthday and letting us know that he was still looking over us. I never believed in ghosts or spirits before my grandad died but I do now - I know it sounds strange but I truly believe that a few times after my grandad died, I have 'seen' him and my nanan and dad have said the same thing too.

My nanan said she had a nice Birthday but it was obvious that she was upset, as we all were. I really wish I could spend my grandads Birthday with him and let him know how much I cared about him. I'd give anything to see his face one last time.

I decided to dedicate this blog post to my grandad. I miss him SO much but deep down, I think I know that even though he has gone physically unfortunately, he will always be looking down on us and watching out for us. Memories keep loved ones close to our hearts and well, they certainly did in my grandads case!

"If tears could build a staircase
And memories a lane,
I'd walk right up to Heaven
And bring you home again'

Happy Birthday Grandad, I miss you so much and would do anything to see your face one last time!

R.I.P - Gone but never Forgotten!

To all of my blog readers, please take the time today to let your loved ones know how much you care about them. So many things went unsaid when my grandad died and I always promised myself that i'd never let the same thing happen again. Lifes too short and you must let people know how much you love them as you never know whats around the corner!!

Love you grandad! Always in my heart. I was so proud to be able to call you my grandad and I scincerly hope I can make you half as proud of me as you did me! xxx

For Everyday I play, I have to set aside a day to pay...

I was reminded of this today. I really hate how whenever you try and do something with RSD, you always pay for it the next day.

It was my mums Birthday yesterday so we went to the theme park, Alton Towers. One of my friends and her mum came with us too which was really nice.

The theme park is really big and although we took lots of breaks, my leg REALLY hurt. Because I have RSD, we get a disabled pass which means that we can get on the rides straight away which is easier as at least that way, we don't have to wait around for ages to get on them.

We got on quite a few rides. They hurt my leg quite a lot as they threw us around but I didn't want to ruin it for my friend and mum so decided to go on them. My friends mum has just had back surgery so couldn't go on a lot of the rides so my mum went and sat with her most of the day to keep her company.

I really enjoyed yesterday but have really been paying for it today!!! I have been in bed all day and only got in the bath tub and that took all of the energy out of me. I really hate that no matter how much you try and not let RSD rule your life, it always seems to. It's SO hard trying to plan a trip out somewhere as I always know that i'm going to pay for it the next day if I overdo things. We took it pretty easy yesterday but I guess RSD has a mind of it's own!! It really gets to me at times when I see my friends out and about having fun and i'm sat in the house because of RSD - I just wish I could be a normal, carefree teenager!!!

Heres some of the pictures of my friend, Jess and I on some of the rides.

Me and Jess on the Runaway Mine Train. It's only a pretty small ride for young kids but it lasts quite a while so was good for a sit down!!



Jess and I on Rita: Queen of Speed. I love this ride and so did Jess! It goes from 0 to 60mph in 2.5 seconds!!



Me and Jess on Air. This ride is so strange - one minute you are sat upright and the next you know, you are laid flat on your stomach!! When it goes upside down, you are laid on your back - so cool!!! I'm not sure what happened to my fingers on this pic - it looks like i've got an additional finger lol!!




I'm off to go and lay down now as it's getting pretty late over here and i'm tired and hurting. I'm hoping that if I can get a good nights sleep, i'll feel better tomorrow!

Update And A Sorry !!

I'm sorry that I haven't updated my blog in quite a while. I haven't been feeling too well lately and have been pretty busy trying to sort things out with school. I feel so bad for neglecting my blog but hope you will all understand!

It's the Summer holidays over here in the UK at the moment and i'm SO glad that they have finally arrived! It's SO nice to be able to relax and not have to worry about getting up at 7am every morning to get ready for school when i'm not feeling too good! We get 7 weeks off and will start school again about the 9th September.

It's hard to believe that when I go back to school, I will also be going to college to undertake the Health and Social Care Course!!

We had a meeting a few weeks back with my school, the school centre and college to see what I will be doing from September and I have been stressing about it ever since! My School are trying to force me into going back to school despite telling them god knows how many times that I cannot cope with all of the walking involved and that my so-called 'friends' haven't been in touch with me for nearly 2 years now!

My teachers keep saying that I HAVE to go back to do my Science lessons and Citizenship otherwise I will fail all of my exams so they have sort of got us over a barrel! I don't want to go back to school as that would risk making my health even worse again (everytime I go back I end up in some flare) but on the other hand, I really want to pass my exams!

The School has decided that I can go to the School centre still but I MUST go back for Science, Citizenship, RE and some other lessons so that will mean that from September, I will be all over the place!

On a Monday morning, I will be at college and then at school in the afternoon.
Tuesdays, I will be at the school centre and then school.
Wednesday, I will be at school in the morning and then college
Thursday, I will be at the school centre in the morning and then college
Fridays, I will be at the school centre and then school.

I have been really scared about going back to school. I just don't want to go back and risk making my health worse and my 'friends' have clearly demenstrated that they could care less about me! My teachers sort of forced me into going back - they told me that I could say if that was OK and that they would ask for my input but they never did and i'm not the sort of person that will say if i'm not happy with something - guess it comes from my Type A personality!

My mum is currently trying to enroll me into a Science course at home so hopefully that way, I wont have to worry about going back to school and can do that at home. The college course is going to be stressful enough so I don't need to worry about having to worry about anything else!!!

We have a meeting next week with my college tutors about the placements to see how they can best accomadate me so hopefully that will go well! They want to try and make sure that I am as safe as possible during the placements so that I don't risk making my RSD any worse. Some of the employees have been a bit worried about giving me placements because of my RSD but my mum works in childrens services so it worked out well in the end as she was able to find me some placements :-) !!

I had a Physio appointment yesterday. It was the first one I have had in a while as my Physios felt I needed a break to see if that would help any. It didn't unfortunately and my knee has still been creaking a lot.

My Physio's did some gentle exercises with me as my knee still wont move much and they were really painful! They are still wanting to look into Botox as a last resort but i'm not sure if I am willing to take the risk of making things worse, especially seeing as though the nerve block and ingrown toenail removal made me worse. We were told that if we decided to give the botox a shot, they would send me to Great Ormond Street Hospital in the UK as that is the leading childrens hospital and they have a specialist botox clinic so should know what they are doing.

It's such an hard decision to make, I really want the Dystonia to go away but on the other hand, I don't want to risk making my RSD worse or ending up being in a wheelchair again! I guess it's a matter of weighing up the pro's and con's and then making an informed decision.

I don't have an appointment to see my Physio's until the end of August now as they still feel that I need a break from physio to see if that would help any. They basically don't want to do too much work on me until the inflammation on my knee settles down which could take quite a while unfortunately.

My mum and I are off to Spain at the end of August so i'm really looking forward to that! We are going to see my grandad for a week so i'm hoping that the break will do us both some good! He has a pool also so hopefully, I might be able to do some pool work whilst there too!

Thanks for reading and I apologize again for not posting a lot lately - I'll make sure I post more soon!!

Physio Appointment

I had an appointment with my Physio's on Wednesday which was the first appointment i'd had in over a month. I usually go every week but my Physio's father-in-law had suddenly passed away so she was off on berevement leave for quite some time.

I have been having a pretty rough time of it lately. I have been dealing with LOTS of pain in my knee, especially when I bend it and walk up and down stairs etc.

We told the Physio's about the knee pain and they took a good look at my knee. We had also started noticing some 'creaking' in my knee. It is really hard to describe how it feels but it literally feels as though someone has hidden some frogs in my knee cap as it croaks - weird, I know!

My Physio's felt my knee and couldn't believe the croaking I was getting in my knee! I think they were pretty fascinated with it to be honest as I don't think they had seen anything quite like it before.

They tried to get me to do some exercises to see how much movement I have in my knee but it was extremely painful. I was only told to bend my knee a little bit but got some pretty bad pain in it and then got a really bad spasm in my hip which was so bad that I started crying. The Physio's could obviously tell that I was in a lot of pain so decided to leave the session at that and did some talking with me and my mum.

They seem to think that I have some inflammation in my knee and that is why it creaks, even when I don't move it. The Neuro Physio thinks that I might have a condition called Femoral Patella which is something wrong with the Patella near the knee cap but I would need to see an Orthopaedic Doctor to get it diagnosed.

I have been told to increase my pain medications to try and help me through this flare as it's obvious that the pain is really getting to me as I have been pretty Depressed lately. I guess it is just getting to me that I can't do most things that any normal teenager can.

I also have an appointment to see my GP tomorrow to see if she has any input on the knee pain and see if she can do anything to help. I have to go and see my Physio's again on Wednesday and they are going to take another look at me then and then try and do something if things aren't any better. They did want to admit me into hospital a few weeks ago to do some inpatient physio with me but can't do it at the moment due to staffing issues and they also want to see if my knee settles down any before doing anything to it.

I'm hoping that we will get some answers from either my GP or Physio's sometime soon. The pain in my knee has really been limiting what I can and can't do and I have missed lots of school because of it.

It's a busy week for us this week. I have to go to college on Thursday to see about the Health and Social Care Course and then we are heading down to London on Friday to see Take That which should be fun!

Just want to thank everyone again for all of the help and support and for taking the time to read my blog - I really appreciate it!

Britney Spears Live In Manchester!!!

I have been in a pretty bad flare for a few weeks now but yesterday, me and my mum went to Manchester which is about an hour and a half away from where we live to see Britney Spears, Live In Concert!!!!

We have had the tickets for a few months now and have really been looking forward to going to see her. One of my mums work collegues went to see her in London though and she wasn't impressed by her. My mum was going to sell the tickets after what her friend told her but we decided that we would go and see for ourselves what she was like!!!

Ciara was supposed to have been the support act for Britney however for some reason, she wasn't there!!! Me and my mum were really looking forward to seeing her as we really like her! There were quite a few other people complaining also as no one had told them that she wouldn't be there, there was just a sign on entry stating that she wasn't performing that night.

I'm not sure if any of you know Ciara but she is quite popular and has done some songs with Justin Timberlake, Enrique Inglesias etc. I was pretty upset about not getting to see her but decided that we came to see Britney more than anyone else and would probably still have a good time!!!!

Seeing as Ciara wasn't performing they had some circus acts come and perform lots of circus routines that left the audience stunned!!! I honestly don't know how they did some of the acts that they did - they must be VERY talented people!!!!

After the circus act had finished, the audience went wild as music blasted through the stereos and Britney was introduced to the stage by Prez Hilton who had put a video together all about the pop princess which was pretty strange but funky at the same time!!!!

Britney certainly put on a show. She was fantastic to watch live and I am SOO glad we didn't sell the tickets!!!! All of her dance routines were great and the show had been excellently choreographed!!!

As most people know, Britney doesn't perform live; she mimes. It would be pretty much impossible to sing AND dance like she does at the same time! Even though she mimed though, it was still good and everyone had a great time singing and dancing to all of the music!!!!

Britney had lots of dancers with her; both male and female. I must admit that some of the male dancers were rather lush with their six packs and they certainly made all of the women and teenage girls happy!!! All of the women in the room screamed as they came to the stage and danced away!!!!

After about every second song, Britney descended below the stage to quickly get changed into another outfit. Me and my mum were laughing as they had spent a lot of money on the concert but yet couldn't seem to afford to buy her any clothes lol !! She was in skimpy numbers or bra's and knickers throughout most of the concert but I guess that is pretty for you!!

Whilst Britney was away getting changed, the circus act came back on to do some quick circus routines ago which were excellent! It was really good how they did it as no one was bored in the audience whilst waiting for her to get changed!

Britney didn't do many of her old songs, i'm not sure why. The only old ones she really did were 'Hit Me Baby One More Time', 'Toxic' and a few others. It was OK though as I knew most of her songs and even the ones I didn't were good due to all of the dance routines that she did!

As she sang 'Everytime', I got a bit upset as the song reminded me about my grandad who passed away last November. It wasn't Britney's fault obviously, I guess some songs just make me pretty emotional as I think about the lyrics as I can relate to them and I am still grieving a bit.

Whilst she sang Everytime, she was suspended above the stage in the air on a really nice chair in lovely fancy dress outfits!! It was really good how they choreographed it and made it fit in with the song!!!

I am really glad that we didn't sell the tickets as she was fantastic!! I am paying for going now due to all of the noise aggrivating my leg but it was definitiely work it! Me and my mum have already said that we would go and see her again on her next tour if/when she does one!!!

What was strange about the concert was as I couldn't walk far, me and my mum were sat in the disabled seating area. I was sat next to a women who had had a knee operation a few months ago and still could hardly walk. As she was coming into the arena, she fell and jarred her knee and it became extremely painful so she had to get her husband to go and get her wheelchair from the car and ask the arena doctor to get her a bandage. Throughout the concert though, I kept noticing that like me, whenever there was a vibration, she would jump in pain and pull a funny face. I just kept thinking to myself that what she was doing semt all too familiar and I could totally relate to what she was going through. I was actually going to ask her if she had heard of RSD or been diagnosed with it but didn't get chance and I didn't want her to think I was being noisy!! It was just strange though how she kept jumping with the vibrations. She told the arena doctor that she was seeing a doctor for her problems so hopefully she will get sorted soon!!

Heres a few pictures from the concer for those of you that are interested!! My mum took them with the digital camera as we were allowed to take pictures!!



The Acrobats performing. The Acrobatic somehow managed to put the frame on his nose and balance out whilst spinning round and it never moved - amazing!!!!



The acrobats performing again. The acrobatic in the air somehow managed to do a roly-poly onto the tightrope/wire without falling over and injuring herself!!!!



Britney Spears taking to the stage and dancing to her first song!!!



Britney Singing and Dancing with the Acrobatics Performing in the Air at the same time!



Britney Dancing with the Acrobats!!



Britney Dancing with the Male Dancers!!



Britney Dancing in a Cage that she was locked in!!



Britney Dancing in the Cage!



Britney Dancing with her Dancers



Britney Pole Dancing in a very Small Number!!



Britney was put into the above 'box' and somehow managed to get out and go to the other side of the stage without any of the audience seeing her!!



Britney With the Male Dancers trying to get her onto the Motorbike!



Britney Performing with all of the Dancers. I am officialy obsessed with the 2 male dancers - they are soo cute and fit!



Britney Dancing Again



Britney in a very nice, sparkly fancy dress outfit!



Britney performing 'Everytime' in the air suspended about the stage!!



Britney with all of her Dancers!!



Britney Dancing with the Male Dancers!!



Britney Performing with the Male Dancer



Britney at the end of the show with all of her Dancers!



Britney saying Bye to all of the audience at the end of the show!!!

Some Days Chicken, Some Days Feathers...

I am getting so fed up with being sick and tired all the time...

I guess today is just a bad day, to put it mildly. I have been dealing with a nasty pain flare now for about a month and there doesn't seem to be any end in sight at the moment. I am having some weird symptoms in my knee that can be very frustrating and painful. Whenever I bend my knee, I get excrutiating pain in the knee cap area that literally brings tears to my eyes. I have also noticed that my knee clicks a lot when I move it and it feels like my whole knee is really unstable. Me and my mum went out yesterday for the day and my knee gave way about 6 times which is making it very hard to walk as I am losing my balance quite a lot.

All of the knee issues started after my last Physio session about a month ago. My Physio's have been using a splint to try and correct my leg and foot position and in the last session, they got me walking in it but my leg kept giving way and my knee was rotating to the side even more. I remember complaining of really bad knee pain and my mum also said to my Physio's that my knee was twisting.

My mum called my physios last week to keep them informed on how I was doing and they said that the splint probably hasn't caused all of the problems I am havin. It seems to be too much of a coinscidence though that the pain and other symptoms started right after my last physio session!!

We were adviced to go and see my GP to get some anti-inflammitaries and to rule out any other possibilities, especially seeing as though the pain isn't what you usually get with RSD. My mum called this morning and we can't get an appointment until the 29th June which is over 2 weeks away!! I can't get in to see my Physio's until next Wednesday either so I guess this is something I am going to try and cope with until then...

I just want and need some relief from all of this!!!! I am off School again today as I just don't feel well and know there is no way I would be able to go and concentrate on my studies in this state!! I HATE missing School all the time and need to do something to stop me from being off school so much as from September, there is no way I can keep missing this much amount of school seeing as though I will be starting College and doing placements etc. I am lucky at the moment that the school centre understands my RSD and will allow me time off but i'm sure that will all be different when I start college!!

Life can really suck sometimes...

Preparing for the Future...

Today at the school centre, me and my teacher had a very long chat about what I want out of life and what carer I want etc.

I told her that I wanted a really good job and really wanted to be either a Psychologist or a Physiotherapist as I am really interested in that sort of stuff, especially now that I have RSD. I had always wanted to be a vet but now that I have RSD, I decided that I wanted to try and do something in the health field and work with people that are going through a similar thing to me.

On a Thursday at School, all of the kids do Drama for an hour and half in the morning. I never really liked Drama anyhow but seeing as though I got accepted onto the Health and Social Care Course at College from September, I will have to drop Drama and just focus on Maths, English, Science and ICT (Computers).

Myself and my teacher decided that doing Drama semt a bit pointless seeing as though I will be dropping it anytime soon so have decided to have some one-on-one time and focus on getting my Maths and English up to scratch.

In a few years, I have got my BIG important tests called GCSE's which I HAVE to pass in order to pass the Health and Social Care Course and get a good job in later life.

We have been doing lots of preperation for the exams and I have been given Romeo and Juliet to watch at home over the weekend.

From now on, every Thursday, I will work with my teachers on my own and do some of my GCSE work. It is hoped that maybe this way, it will be less stressful. I have missed out on a lot of school work due to my RSD so somehow need to try and catch up real fast.

It's quite scary to think that in less than 3 months, I will be starting a course at college and in 2 years time, I will be doing my all important exams!! Time seems to have really flown and I just hope that I will be able to concentrate enough in order to pass!

I'm off on a mini weekend break with my nanan tonight. We have a caravan (an home away from home sort of thing) at the seaside so we will be going there while Sunday as I don't have school tomorrow. It will be nice to get away for a bit and spend some quality time with my nanan and give myself a break also!