Update Re My Health and Other Events Happening In My Life!!

I'm sorry that I haven't updated you all with everything that has been going off with me for such a long time. Things have just been so busy here and I am having a pretty hard time adjusting to life without my grandad - I try to put a brave face on for my friends and family but it isn't easy to say the least and I often find myself crying in tears on my own in my bedroom. I am one of those people that isn't very open about my emotions; I always want to try and be the brave person but I have to realise that it is OK to open up and that it doesn't make you weak. I am always giving people advice and telling them to tell people how they feel inside but I am my own worst critic in a way as I don't follow the advice I give!!!

My mum got a Phone Call today from my Physiotherapist's in Great Ormond Street, London. I was supposed to have been on the Intense Physiotherapy Program now and was due to be having my leg casted but my mum ended up cancelling the appointment as even the thought of having my leg placed in a cast scared the h*ll out of me!! The Physio's wanted to know how I was doing and they asked my mum whether it would be possible for me to go back onto the program again soon. I didn't really want to have to return back onto the Program (who would?!) but the Physio's have booked me in for 2 weeks from the 27th April.

After my mum spoke to the Physio's and told them that she was concerned about casting my leg, they eventually decided that they wouldn't cast my leg this time but if the next Physio program doesn't work, then they will have no choice but to have to cast my leg. I am just hoping and praying that the Physio will help me and get rid of the Dystonia as I really don't want to have to go down the casting route. I've had my leg casted before in the early stages of my RSD and it made me so much worse so I don't know if I am prepared to go down that route again.

I see my Physio's on Wednesday. I haven't seen them for about 10 weeks so i'm looking forward to seeing them and hope that they will be able to give me some exercises to do that might help my leg. The weather is so horrible over here in the UK at the moment so it's made my pain somewhat worse!

My friend was rushed into hospital on Friday. She collapsed and she was totally non-responsive and her mum said she was out of it for about half an hour so she had to call an ambulance. Her face also swelt up really bad whilst she was in hospital so they had to put her on a really strong course of IV Antibiotics. She is out of the hospital now thankfully but the doctors still aren't sure what is the matter so she has to go and see another doctor this Thursday who might be able to help her. I'm hoping to go and see her either tomorrow or Thursday with my mum as I haven't seen her for ages and want to check that she is OK.

My great-aunty passed away a few weeks ago. I guess it's a blessing in a way as she was very ill. She had terminal cancer that was throughout her entire body and she was also developing Dementia from being in the hospital. She couldn't have any Chemotherapy as she had a severe blood-clot in her leg and even if she could, it would only have given her a few weeks at the most. The funeral was last Friday; I didn't go as I thought it would be too upsetting after the loss of my grandad.

School re-started about 2 weeks ago. I have missed 2 days already as I haven't been feeling well but the teachers are very understanding thankfully so it makes things a lot easier and I don't feel quite as guilty. I have started getting a taxi to the school now; it makes things somewhat easier for my mum as she isn't having to take me to school and then go to work but the taxi drivers are a bit ignorant sometimes. One day they turn up really late and the next day they will turn up really early so you never know where you are really and i'm not always ready. I share the taxi with 2 other children from near where I live and the taxi is free so it isn't too bad!

I have to go to a meeting with the School next Wednesday about my Options. Options are basically where you choose what subjects you want to do in the last 2 years of School - you have to do Math, English and Science and then you can pick whatever other subjects you want to do. I want to be a Psychologist when i'm older so I have been told to take something like Social Studies as that should give me a lot of experience. It's hard to believe that in another 2 years I will be graduating from School - it only seems like 2 minutes ago that I was attending high-school!! I'm getting pretty nervous about the meeting; all of the teachers make a big deal about it but hopefully it should go well!!

My mums booked tickets for me, her and my dad to go to Vegas soon!! We fly to Vegas on the 1st March and get back on the 6th. I'm looking forward to going as I need a break but i'm also a bit scared about flying with RSD as i'm not sure how I will react!! We have been to Vegas before I got RSD and I loved it - my parents don't gamble at all but there is still so much to see and do!!

I will keep you all updated. I have a busy week this week with appointments so i'm sure I will have plenty to fill you in on!! Thank you all for reading this and I hope you are all having a good day!!

Merry Christmas Everybody!!

I would just like to take this time to wish all of my fellow Blog Readers a very Merry Christmas and I hope you all got everything you wished for and that you had fun with your friends and family and got to create many happy memories that you will be able to treasure forever. Thank You all so much for taking the time out to read my blog and to comment - I truly appreciate it and know a lot of the time, I ramble but it really helps me to be able to get my feelings out and I love reading all of the comments from people! I hope that 2009 is a great year for you all and that you are blessed in every way imaginable!!

This Christmas was pretty tough for us this year as it is the first Christmas without my grandad and we all miss him SO much! Christmas just isn't the same without him; he was always the one that would buy us all little novelty gifts and would ALWAYS have to have the best Christmas trimmings on the street - he loved Christmas and spending time with his friends and family!

I got lots really good presents. My mum and dad got me an IPhone which I have wanted for absolutely ages but never been able to afford! I absolutely love it and haven't put it down since I got it yesterday morning!! I also got lots of lovely designer clothes and shoes that will be comfortable for my RSD leg, a new handbag, Me-to-You teddy bears, Chocolates, Skin Care and Make-up and so much more!! I also have quite a bit of money from my nanan and uncles so we are going to the Christmas Sales today to see if we can get anything!!

We had a nice Christmas dinner yesterday. We didn't have Turkey has non of us really like it so we had Chicken instead and it was lovely. My mum also made a Chocolate Cake for desert that was so delicious!!

We also went and spent some time with my grandma to make sure she was OK. She said she was fine but she was really quiet which isn't like her - I think it's hit her really hard with it being the first Christmas without my grandad. We spent about 4 hours with her and she loved the presents that we got her - we got her some shoes and a book and are going to take her for a vacum cleaner when she has picked one she wants. My Uncle has asked her to go for a meal with him tomorrow so that should be nice for her as it will get her out of the house for a bit - he also wants her to go to stay with him for a week for the New Year but I don't think she wants to go as she feels it is too soon at the moment and doesn't really want to leave home.

I miss my grandad SO much but I know that life has to go on somehow, even though it is extremely difficult to do so. I know my grandad would want us all to try and have some fun as he loved Christmas so that is what we are going to try and do and I also know he will be looking down on us and will never leave our side, even though we can't see or talk to him in person unfortunately.

I hope you all had a great Christmas and I wish you all a Very Happy New Year!

It's Nearly Christmas Already!!

I can't believe it's only 9 days until Christmas!! We haven't even got our Christmas tree up yet, usually, I am making my mum get the tree up by the 1st December but this year, nobody can be bothered to go and put it up with everything that has happened with my grandad. Non of us are really looking forward to Christmas this year but we will probably try and get the tree up tomorrow as I know my grandad wouldn't want us all to not celebrate as he loved Christmas so much and it was his best time of year as he got to spend time with him family and friends.

Christmas wont be the same without my grandad. He was always the one that made us laugh by coming out with stupid little jokes, bought me extra-special presents, made us get the Christmas tree and kept buying little novelty gifts for everyone. My grandad was the life and soul of Christmas, I always loved going round to his house and spending lots of quality time with him and reflecting back on memories.

I don't have any other grandad that lives in the Country so I think that is what is making me feel more upset and depressed. My other grandad (Mums dad), lives in Spain with his wife and isn't going to be coming to see us this year. He lives about 3 hours away from us and says he wants us to go and see him but it would cost a lot of money to get a flight and it is simply money we can't afford. It is always left to us to go and see my grandad and he never wants to come over here. He never likes spending money so I guess that is one of the main reasons why he doesn't come and see us but still, we are his family and he should be here with us!!

At the moment, I feel like I am grieving over 2 people and it makes me really upset to think that my grandad who has just died, didn't want to leave us but had to and my other grandad just left us because he wanted to. My mum is a bit sick of what my grandad is doing to us also and she has said that to him many times but it never seems to sink in and he just goes on about how happy he is over there and how he wouldn't change it for the world. I'm happy that he's happy, don't get me wrong, i'm just upset that he isn't here and wont be spending Christmas with us as a family.

We have got most of our Christmas shopping done now. My mums ordered most of it online as I didn't feel like going and looking round all of the shops for presents. We don't have a clue what to get my nanan, we want to get her something special but don't know what she would like. We were thinking about taking her to London for the day to watch a Musical so that I could spend plenty of time with her for a treat but we don't know what she would like to go and see really. We've got her a cookery book as she loves cooking but want to get her something else for a treat.

My mums arranged for me to go and have a beauty makeover for Christmas. She wasn't going to tell me but had to because I was going to tell my great grandma to get me it!! It is something that I have always wanted to do; I don't want to be a model or anything but I always think it's nice giving your family something that they can treasure and hang in their homes. I will be getting my hair and make-up done and then will have professional pictures taken of me in lots of lovely clothes (we have to take our own so I think we'll be going on a shopping spree when the sales are on!).

I've been trying to channel my enery in a positive way to try and shake this depression that I feel I have coming on. Felicia has really helped me and told me that everytime I feel depressed, to think about the nice things that I have coming up after Christmas and think that my grandad would want to see me happy. It really does help when I remember to do it - I have been leaving post-it notes everywhere reminding myself that when I feel depressed, I have to channel my energy in a positive way!!

Merry Christmas everyone - I hope you all have a great time with your friends and family and get all of the presents you wished for!!!

Forum Troubles and Being Stressed

As most of my blog readers know, I lost my grandad 3 weeks ago and I also run a support forum for people with RSD and their friends and family.

I have been SO stressed with everything that has been going off in my life and my familes and was frustrated on the forum when I posted a message and no-one replied to what I had written. I guess I just felt like I had done so much for the forum but no one semt to want to help and support me when I needed someone to talk to. My mum noticed the post before I did so she posted a message saying that she was frustrated and angry that not many people were replying to my posts even though I am going through a very rough time right now but still take the time to reply to others. She also mentioned that she felt now was the time to take a break from the forum and maybe step down from being an Administrator, at least until I can get things back onto an even keel.

After I saw the message that my mum had wrote, I also posted a message saying that I too was frustrated with people that weren't replying to my posts. I didn't put anything nasty but I just said that I felt now was the time I stopped doing everything on the forum. People then replied saying that I had hurt their feelings and that basically what I was saying wasn't true and that they are all there to support me even though some of them have not been. Just the other day, I was talking to someone on Yahoo IM and they knew what had happened with my grandad but still persisted in telling me about how bad their life is, in the end I ended up having to say I had to go because they were really annoying me.

Some people on the forum (especially Felicia) have been great but with others, I just feel like everything has been left to me and that I am having to do everything even though i'm not feeling well myself. I just can't understand why people can't seem to understand what I am saying and realise that I need to take a break otherwise I am going to end up going into a huge flare!!!

I've still decided though that I need to take some time to myself, to relax and just unwind and take care of myself and my family. There is just too much going off right now in my life without having to worry about the forum all of the time.

Hopefully, once I am feeling better, I will be able to go on the forum more but it's just so frustrating that people can't see things from my point of view and realise that once in a while, I may need to take a break!!

I'd like to take this time to thank a few people also that have helped me so much and always been there for me no matter what:

Felicia (Alessea) - Thank you ever so much for being here for me and everything that you have done for me. You have helped me so much more than you know and I could never thank you enough for seeing things from my point of view with the forum and for understanding. You are the best friend anyone could wish for and I could never thank you enough!

Lisa (Lisa_Moon) - Thank you ever so much for taking the time out to read my blog and comment, it really helps knowing that people are here to listen to me let off steam and I could never thank you enough also ((hugs)). I really hope things are better for you and that you have settled into your new home now!

My mum - Thank you so much for always being here for me and for supporting me 100% in everything I do. I could never in a million years thank you for all of the support you have given me - you're the best! I love you so much!

One of the Worst Weeks of My Life

This week as got to have been one of the worse weeks of my life. I am so physically and emotionally shattered at the moment that I don't know whether I am coming or going and the little energy that I did have before all of this happened as just about gone.

On Monday, me, my mum and my nanan went to see my grandad in the Chappel of Rest and that was so hard. My grandad just looked so normal and we all expected him to just jump up and say "I fooled you all" but I guess it is just wishful thinking unfortunately. My grandads coffin was full of pictures of all of his grandkids and kids and I put a letter in that I had written to him and my nanan put his favourite had in (he would never go anywhere without it!).

We didn't stay in the Chappel of Rest very long as it was too upsetting but we all said our goodbyes and told my grandad that everything would be OK.

Tuesday was the day of the funeral. I honestly don't know how I managed to get through it all. It was SO much worse than I ever imagined it would be. I think it made it harder with me going to the Chappel of Rest but I honestly wanted to go and say my goodbyes. Even just seeing the coffin out on the street made me cry. When we got to the church, we said our prayers and sang hymns and the vicar spoke about my grandads life. It was SO hard when he spoke about how my grandad met my grandma and how much he lvoed all of his children and grandchildren.

On the way out of the Church, the vicar played a football rap as my grandad was a very big football supporter. It was supposed to make us all smile but I think it totally had the opposite affect as everyone was in floods of tears!!

After we got out of the Church, we went to the Crematorium. On the way in to the Crematorium, they played 'I did it my way' by Frank Sinatru and even just hearing the lyrics made me cry. My grandad always had to do things he way and even if we told him to do it the easiest way, he would still have to figure it out for himself!

When they closed the curtains in the Crematorium, I just wanted to stand up and shout that was my grandad and that they couldn't do that to him but I know it's too late unfortunately now, he's gone.

When we got back from the Crematorium, we went to our local pub for a tea service. All of our family was there and it was pretty nice - it's just such a shame that it takes a funeral to bring everyone together. I got to see my cousion, Shakira who had a liver transplant last year and she is doing great! She is only 5 so doesn't really understand what has happened to my grandad.

Wednesday, we took my nanan to town as she wanted to take all of the verses to be put into the papers. It cost an absolute fortune! Thankfully, nearly everyone as paid for their verses but my aunty still owes my uncle some money for both the flowers and the verse. I doubt he will ever got the money back as she is one of those people that just expects everything for nothing. My grandad gave her £2000 for a new kitchen about 2 years before he passed away and he never got the money back! My grandad was always the soft one and would give into her but my nanans promised us that she wont.

Thursday, we spent most of the day arranging things and phoning and filling in forms for my nanan. We should get the ashes back sometime this week and my nanan wanted us to order a rose bush for her. We have ordered one that is yellow and supposed to be a 'Celebration of life' and have named it after my grandad. My grandad always said that whenever anything happened to him, he wanted to be put in the back garden so that is what we have decided to do!

I have spent the rest of the week trying to rest as my RSD is flaring up again. I think the stress and all of the walking and things has really affected me. I have been going to see my nanan every day and it's really hard when I don't feel like doing anything but we need to go and check that she is OK.

I start back at school again tomorrow - i'm not sure if that's a good idea or not. I don't know if I am ready to go back at the moment but on the other hand, I want something to take my mind off everything. At least I know that everyone will be supportive and if I don't feel like doing anything, I just have to tell them.

Sorry for rambling - am still very upset and not sleeping.