Time to Reflect on The Past Year

As the year ends, I thought it would be nice to reflect on the past year and to think about all of the things that I have achieved, the things that I need to work on, the things that I wish I did differently etc.

2008 has been a very busy and stressful year for me. I have been going to hospital appointments weekly and sometimes even more than that, have attended 2 Intense Physiotherapy Programs which ment I had to stay away from home for a little while, have tried various procedures to try and put my RSD into remission, my grandad passed away which was highly stressful and upsetting - the list of things I have done could go on forever and ever but i'll stop there!

I have learnt so many things this past year that I never even imagined were possible, some of the things I have learnt unfortunately had to be learnt the hard way whilst some of the things I learnt for myself by talking to others.

I have learnt that I HAVE to live life to the fulliest everyday because you just don't know what is around the corner. It is SO hard going out sometimes when I just don't feel up to it but I have learnt to as I now realise that you have to live life to the fulliest because you just don't know what is around the corner. I am trying to live my life to the best of my ability and am hoping not to have any regrets, although of course that is impossible!

I have learnt that I am a much stronger person than I thought I was! The 2 Intense Physiotherapy Programs really made me strong and whilst many times I felt like giving in and going home, I didn't and I would never be at the point where I am now if I had have done!

I learnt that it is OK to ask for help and that it doesn't mean that I am weak. Everyone, even without physical problems have to ask for help at some point in their lives and it is completely normal.

I have learnt to listen to my body and not push myself too much. At the beginning of my RSD journey, I just would not listen to my body and I always ended up in major flares afterwards. It was hard trying to listen to my body in the beginning but I am getting there slowly.

I have learnt that I can help people that are in a similar position to me even if it is just a little or if we live miles away!

I have learnt a lot...

I still have a huge way to go in battling my fight against RSD but I truly believe that with persiverance and a little time and effort, I will get there and nothing is impossible! As Felicia said, "Spread your wings and fly, nothing is impossible"!

Many times I feel like giving in but then I realise that things could always be soooo much worse and that I am lucky to be able to do some of the things I can do, even though it might not feel like it at times. I am thankful that I have a roof over my head, food and water, can walk short distances etc ... many people aren't so lucky!

I have learnt a lot this year and I have had to learn some things the hard way which was extremely difficult but I truly believe that things happen for a reason. I am going to try my darn hardest to fight this monster RSD in 2009 and try and get it into remission somehow!!

I also wanted to wish you all a great New Year and I hope you are all blessed in every way possible!

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!

4 Days Until Christmas!!

Can you believe it is only 4 days until Christmas?!?! The time seems to be flying by at the moment and we still have some Christmas shopping to do for my Uncles but thankfully, it is nearly all finished and is all waiting to be wrapped up - yay!!

I have been in a pretty bad RSD flare for the last week or so. My leg is rotating out to the side more and more and my mum say's I am limping a lot more than usual when I try to walk anywhere. I was supposed to have had a Physio appointment this week but just didn't feel like going so we cancelled it - I don't think my Physio's were too pleased as the next appointment isn't until the end of January but at least I will get a break!! I haven't been sleeping well at all so I don't think that is helping as I have a lot on my mind and everytime I try to close my eyes, I have weird dreams!!

We went to my great-grandmas yesterday to take all of her Christmas presents down. We got her a bath-board for Christmas - I know it isn't very exciting but she is 87 and can't walk much so we thought it would help her. As soon as we took the present into her house,she started panicing as she didn't know what it was and kept begging us to tell her what it was, we tried ignoring her but in the end, my mum had to tell her as it was the only way to stop her from panicing. When we told her it was a bath board, she started yelling saying that she didn't want it and that she would give it to someone else!! It's so frustrating at times as she just wont accept she needs help and can be too stubborn for her own good - I love her to bits don't get me wrong, sometimes though we just feel as though everything we get her isn't appreciated as she always gives it away to someone else!!

I went to the Craft store yesterday and got something to make my nannan a card with. I started making the card last night - it took me 2 hours to make it but it is looking really nice!! It was SO hard making a card for just my nanan as i'm so used to making one for my grandad as well and I guess it hit home that this is the first Christmas without my grandad. I guess it's just something I will have to get used to even though I don't want to.

I hope you all have a great Christmas and that 2009 is a great year for us all!

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.

How I miss the Little things

It's amazing how much I miss the little things about my grandad. Like his smiley face, not seeing all of his cardmaking supplies all over the house, not making him a cup of tea when I have to make my nanan one etc.

I miss him SO much already and I wish I could just turn back the time and everything would be OK. They tell you that things get easier day by day but at the moment, I don't think they do, if anything, they seem to get harder.

My nanan got the results of my grandads post-mortum yesterday and it wasn't an heart attack he died from, it was rather Pneumonicosis and Bronchial Pneumonia that he got from working down the pit.

My Uncle also took my nanan to make the funeral arrangements and it is costing a LOT of money to say it is a crematorium!! The corener told all of the grandkids to write a letter to my grandad and that as to be one of the hardest things I have ever had to do in my life. Everytime I wrote something, I would start crying un-controlably. I told my grandad how much I missed him already but also asked him if he remembered when I broke my arm when we went to the caravan and how I was so stubborn as I wouldn't let my nanan take me to the hospital as I thought the taxi would cost too much, instead I waited about 3 days!! My nanan and grandad told me that my health came first, not the money but I wouldn't listen to them at all!!

I also have to find a recent picture of me to put into my grandads coffin. My grandad will be at the Chappel Of Rest from Monday but to be quite honest, i'm not sure if I want to go at the moment as when I saw him in the hospital, it was too painful...

Life is so Fragile

I'm just beside myself at the moment with shock, guilt and sorrow.

We got a phone call yesterday morning about 9.30am UK time from my grandma (dads mum). She was really worried and said that my grandad had collapsed and that he wasn't breathing and that she didn't know what to do. My mum called an ambulance and my dad rushed round to check on them both.

The Ambulace didn't take right long to come and when they got into my nanans house, they immediately started to do CPR on my grandad to try and get his heart beating again. My nanan and dad asked my mum to go round to their house also so that she could sort things out and my mum said the doctors were working on my grandad for about half an hour in the house before they were able to get him into the ambulance and rush him to the hospital.

When they eventually were able to take my grandad to the hospital, they had to have a police car escort them to try and give my grandad the best possible chance of surviving. My mum took my nanan to the hospital, and my dad came round to check on me and tell me to get ready has my nanan wanted me at the hospital.

When my grandad got into the hospital, the doctors immediately started to do CPR on him again and started wiring him up to all sorts of machines. My mum and nanan wasn't allowed to go in to see my grandad, has it was too dangerous with all of the machines.

The Doctors worked on my grandad for about an hour but unfortunately, he didn't make it and passed away.

When I arrived at the hospital with my parents, most of my family were there. The nurses and my nanan had called everyone and told them to get through to the hospital immediately.

The nurses allowed us to go and see my grandad and say our goodbyes. I went in with my mum, dad and grandma and I have to say, it was one of the hardest things I have ever had to do. We all broke down in tears and my nanan started shouting that she wanted him back and that this wasn't fair. Seeing my grandad laid on the bed with tubes hung out of his mouth really hit me and the reality set in that this would probably be the last time I would ever see my grandad.

We stayed at the hospital for a few hours with my family and we were allowed to go in and see my grandad as much as we wanted but I wouldn't go in again has it was far too distressing. My nanan went in with my uncle to comfort him though.

The nurses explained a few things to us and said that it is suspected that my grandad had a massive heart attack but because it was so sudden, they are having to do a post-mortum. The doctors believe that my grandad passed away within 30 seconds of him collapsing and that he didn't look to be in too much pain thankfully.

When we got home, we went and stayed with my nanan for a bit to comfort her and get her a few things. She couldn't really be in the house on her own has it was too upsetting. She kept looking and staring into the chair where my grandad usually sat (and where he also collapsed) and it was so heartbreaking to see.

My grandad wanted a cremation so that is what we are having done. There will be a lot of people at the funeral has my grandad was loved by everyone and no one had a bad word to say about him. The Undertaker is calling my nanan sometime tomorrow morning to start and sort things out and put things in place.

I am a lot more upset today than I was yesterday. I can't eat hardly. Can't sleep. Don't want a drink or anything. I think yesterday I was in shock and just wanted this to all be a big nightmare and that I would wake up and everything would be OK but now I know it isn't.

I SO wish I told my grandad I loved him more often. Wish I didn't say all of the things I said about him not understanding my RSD. Wish I saw him more. There are so many things I wish I did and so many "If only's" but I know they aren't going to help.

I just feel so guilty about everything I said to my grandad. There are so many things I would have done differently and I SO wish I could just turn back time and everything would be OK.

It just goes to show that life is so fragile and if I could say one thing to my fellow blog readers, it would be to tell your family and friends and loved ones that you love them often as you just don't know what is around the corner.

I better go as i'm in tears here...

GRRR, So-Called Friends!!!

It's amazing how much this disease, RSD, makes you realise things that you would probably never have even known. I am not thankful that I have RSD because I do not want it (I mean, who would want to live in chronic pain constantly and not be able to walk?!) but I think it has probably helped me realise some things that I would never have known had I not developed this life-changing condition.

One of the main reasons I had to leave my old school was because of my "friends" not being supportive. The teachers at the school had told me that they were all supportive and that they always asked how I was doing and that they couldn't wait to see me so I really wanted to go back there and socialise with my "friends". However, once I returned to the School, all was not as it seemed. My "friends" never asked how I was doing, instead they just ignored me and pretened I didn't exist. I mentioned this to the teachers and they said that I was being stupid and that of course they cared about me. They were supposed to spend breaks with me and go and sit in the library but they didn't, they just went about doing their own things leaving me sat all on my own.

On the first day back to School, one of my so-called friends wouldn't allow me to sit next to her in the form room. My form tutor kindly asked her if I could sit next to her for 10 minutes and she harshly replied "No, she can not"!! The best bit about it is that this girl reckons she also has RSD in her leg, arm, back and teeth so honestly, if she did, she more than anyone should understand how important it is to sit down and rest and how painful this condition actually is.

I also had pressure from teachers, they wanted to rush me into doing things that I couldn't do. One day in Maths class, I had a teacher complain at me for not paying attention, when I told him it was because of my pain, he said that it was my leg that was injured, not my brain!!! I was also hopping on crutches one day to a lesson and the teacher that was with me said that I had to get a move on has she had better things to do! The last thing she told my mum was that everything would be on my terms and that if I was unable to do something, that would be fine. 2 days after that happened, I ended up in a major flare. It isn't surprising really given the amount of stress I was under.

My mum emailed the school and complained but they never replied to her emails so in the end, she ended up having to call them. The School tried to make it out that it was us that was in the wrong and that is was our fault for not updating them - even though we let them know how I was every week!!!

I mentioned what was going on with my friends to the School's Psychologist and she said that on the day I ended up in the flare, they were going to have a word with my friends to try and sort everything out. From what I can understand, they were going to sort of bribe my "friends" into being nice to me. You can't bribe someone to be your friend, you are friends with someone because YOU want to be, not because someone makes you be.

I'm so frustrated over everything that went off at the school with my friends and everything. The more I think about it, the more I think my "friends" were just using me for what they could get. On my 13th Birthday (2 weeks before developing RSD), I took 2 of my "friends" to the arena near where we live to see Rihanna and the Pussycat Dolls, we took them shopping almost every weekend before I developed RSD and bought them things and their dinners, took them to the movies when something good came out etc. While ever I was buying them something, they all wanted to be my friends but when I developed RSD and couldn't take them anywhere, they lost interest very quickly. Thinking about it now though, the day after we went to see the Pussycat Dolls, my "friends" never even spoke to me, it was like they got what they wanted and they were happy and not interested in me.

I need to somehow try and forget all of those bad experiences I had with my friends and try and move on. This condition has really helped determine who my true friends really are. At least at the new School Centre, I know that the children there are my friends because they want to be, not because I buy them things. I think it's easier has they have all being in a similar situations so know how I am feeling in some ways.

From now on though, I am not going to buy people things until I know whether or not they are my true friends. I don't want to fall into that trap again.

Sorry for rambling, I just needed to let this all out has it has been on my mind for a long time and I guess this is what my blog is for!!

My Weekend

I haven't really done anything this weekend. You see, now that I am going to the School Center, I have to spend most of the weekend relaxing for the upcoming week, otherwise I may end up in yet another flare which I really don't want! It's strange how even just going to a School Center and staying in one place for 4 hours every Monday, Wednesday and Friday can make me so fatigued but trust me, it does!!! I am SO glad that so far the school center is going well and that I have made some new friends who are really nice and supportive ... unlike my so-called friends at my old school!! Apart from the fatigue and pain, I am happy at this center has the teachers understand and don't rush me into doing anything, I am allowed to take a break as and when I need to etc.

The School had a meeting on Friday to officialy "hand me over" to the School Center. We haven't heard anything about how it went but I did get an email from my Psychologist at the School asking how the week at the Center went and if I was worried about anything. I think she thinks that my mum forced me into going to the center even though she didn't!!

I have been talking to my friend, Brogan from the School Center on MSN today. She was really upset has her 19 year old sister has just had a miscarraige. She was about 12 weeks pregnant and was so looking forward to having the baby. Brogan says that she wont even talk to anyone now because she is so angry and upset about what has happened. I comforted Brogan for about half an hour until I had to go but I told her that if she ever wants to talk to someone, that she can always email me. She has been so good to be in the past week that I have known her so it's the least I can do. She said that she will be at the School Center tomorrow but that she may not be her normal, happy-go-lucky self, which is only to be expected. I understand a lot of how she is feeling has I lost my grandma when I was 6 and now that I have RSD, I just feel like I am on an emotional rollercoaster all of the time!

We had the builders in yesterday, they are only supposed to come and work in the week but they had to move our boiler ready for tomorrow. We are having an extension built and a new kitchen fitted has I am quite unsteady on my feet and fall really easily. Hopefully that should make things a little easier for me and my mum.

My mum isn't feeling too well. She hasn't been feeling right for a few weeks now but she now has this weird tingling sensation in the fingers on her left hand. She has promised me that she will call the Doctor tomorrow if it's no better and get it checked out. It's kinda scary has my nanan had Progressive MS and her symptoms started similar to the symptoms my mum is experiencing, although hers was her eyes that started being affected. I've noticed that my mum hasn't been sleeping well either, she gets up at about 5am so I don't think that is helping. She says she feels like I do that no matter how much sleep she gets, she still doesn't wake up feeling refreshed and always feels quite drowsey. I shall keep nagging her until she goes to the Doctors, I think she is scared but like I told her, it's better to be safe rather than sorry and hopefully it will turn out to be nothing serious and it can be easily treated. She's her own worst enemy has before I was diagnosed with RSD, she always wanted to take me to the hospital to find out what was wrong but now SHE is ill, she doesn't want to go!!

My leg has been spasming a lot more than usual today also. The spasms almost threw me off my computer chair this afternoon because they were so bad! It was quite a scary experience to say the least. The weather is horrible so I don't think that has been helping, one minute it is hot and the next it is really cold and raining!!

I'm going to go and try and get some sleep has I haven't been sleeping right well, wish me luck!!...

School and Home Life

It's my day off from school again today. I am so glad because whilst I love the School, I really need time to relax and "recover" from the previous day.

Yesterday at School we did some Science and Maths work. In Science we are learning about the Digestive System which is really interesting. I did some work on it with my home tutor so I understand some of it already. In Maths we did some work on Percentages. I am rubbish at Maths to be honest because I suffer from Dyspraxia which affects my ability to work with numbers and affects my co-ordination. It is pretty stressful at times has I feel like I am hopeless but at least I know there's a reason why I can't do it. A lady also came in from Connexions to talk about Careers, she was asking what I want to be when I am older and I told her that I wanted to be a Psychologist and help people in chronic pain like myself and she said that I would need to take English and Social Studies. She was really nice and said that I would be a good Psychologist has I know first hand what it is like living in chronic pain. Some of the children are going to a College near where we live next Wednesday, I was allowed to go but I am unable to attend unfortunately has I have to go to my Physiotherapy appointment.

I had a good long chat with a girl at the centre, she is really nice and shares a lot of the same hobbies has me. She gave me her email address and we have been IM'ing eachother today. It's really nice talking to someone who doesn't judge me for a change.

After I got home from the School centre yesterday, I went to my grandparents has the builders were in our house and I couldn't get in. I finally think that my grandparents are understanding what RSD is has they actually asked how I was doing for a change. I had to show my grandad how to send an email has he doesn't know how to do that, it was a nightmare but he got there in the end and has been emailing me ever since!! It's quite good has hopefully I will be able to keep him updated on how I am doing without going to see him if I don't want to. Things will never be like they were with them has they have hurt me too much but I DO think we might be finally getting somewhere. I'm trying not to get my hopes up though has I don't want to be let down once again.

My mum came and picked me up from their house when she got in from work and we went to the store, Asda to do a bit of shopping. I couldn't walk around so just went and had a look at the clothes and then went straight back to the car. They had some really nice fashionable clothes that I looked and I got some PJ's which are nice. They look like a tracsuit but are PJ's so I will be able to lounge around the house in them if I want to.

I'm not feeling too good today. The weather is absolutely horrid (it hasn't stopped raining all day) so I don't think that is helping with the pain at all.

I am going to go and lay down so hopefully I will feel better for tomorrow....

I think my grandparents are Finally getting it!!!

Yes, you heard that correctly!! I think my grandparents are finally realising that I AM ill and that I need some extra help and to hear some comforting words.

I went to see them again today, it was paticulary buy choice but I had to has the builders are in our house and I couldn't get in after I got back from the School Centre. The first thing my grandma said to me when I walked through the door was, "How are you, you don't look too well?". I told her that I wasn't feeling too well and was really tired has I hadn't slept properly and she told me to sit down and rest and made me some tea. Before today, it was a real nightmare trying to get them to understand and they wouldn't show any interest in my illness what-so-ever but today I actually felt like they cared and wanted to hear how I was. My nanan told me that I need to tell them exactly how I feel rather than trying to protect them from everything, which was nice.

I think that me struggeling round to see them on Monday did help, it didn't help my pain but I do think it made them realise that I can hardly walk short distances and made them understand why I need to use the extension.

I really hope that they are going to start understanding from now on as it would make things so much easier knowing that someone in my family, other than my mum is there for me when I need to just let things out.

Things will never be the same has they were before RSD has they have hurt me too much for me to be able to trust them but I do think they are finally starting to understand somewhat.

A big thanks also to Felicia for writing the letter to my grandparents, I really think that helped also, even though they wont admit to it.

Update: Wednesday

Today is my day off from School so I am able to get a rest. We have decided that it is best if I just go to the School centre, Monday's, Wednesday's and Friday's, so that I will be able to get a break inbetween and hopefully allow my body time to recover.

Yesterday was a very busy day!! I went to the School Centre for 8.45am. A teacher was supposed to have been coming in to help us with our confidence but she had come down with the flu so wasn't able to come - she is coming next Monday instead. The teachers at the school gave me a load of sheets to fill in and I had to answers questions like, Why aren't you able to go to School, Who do you trust and who don't you trust etc. The teachers wanted me to fill out the form so that they had an idea of what they need to work on with me. After I filled in literally 50 sheets, we went for a break and had tea and toast, which was nice!! After break, the teachers asked me to write a story about an event that has happened in my life. Of course, I decided to do mine about the day I developed RSD, it was really hard trying to remember everything that happened and a bit upsetting but I got there in the end and the teacher was very pleased with my work!!

Monday's at the centre is PE day so all of the children that are able to do PE went into the gym and played fast cricket. Me and another girl who has ME, worked with the teachers and did an ECDL course on the internet. ECDL stands for European Computers Driving License and is a test that you do on the computer and at the end of it you get a certificate and it is a recognised qualification that many employees ask for. A lady is coming in next Tuesday to start the ECDL course with us.

When I got home, around 1.30pm, I went and had a rest for an hour or so and then decided to go on the computer. The builders that are currently working in the house, had to turn the electric off but never warned me. I ended up having to struggle round to my nanans to call my mum and let her know. My grandparents only live about 2 minutes away but the walking almost killed me!! When I eventually got into their house, my nanan said she thought I was going to collapse!!! My nanan and grandad don't really understand so I must have looked bad for them to say that.

I stayed about 3 hours at my grandparents house, I did want to go back home but decided to wait for my mum to come and pick me up in the car rather than struggle any more. I made some cards with my grandad which was VERY hard one handed but I managed!! I used to make cards all the time but either don't feel well enough to make any now or just don't get the time because of other commitments.

My mum came and picked me up on her way in from work and took me back round home. We had about 20 minutes in the house and then my mum decided that she had to go to the pet store for some food for our dog, Jack. I decided to go with her but didn't go to the end of the store has it would have been waaaay too far for me.

We then went and ordered a take-away and had that around 8pm. After I had my supper, I decided to go and get changed into my PJ's. I asked my mum to pull the Ugg Boots off my RSD leg but she couldn't, my leg was stuck in them!! It took us 1 whole hour to get the boots off. My mum wont allow me to wear them again now but they are so comfy, apart from when I try to get them off which is another story altogether!! When we eventually got the boot off, my mum noticed that my foot had swollen a lot more than usual so that was why I couldn't get them off!!! Needless to say, my pain was REALLY high after that!!!

It was a long and eventful day and I am so ready for my rest today!! ...

Grrrr, Pain Flare

Grrrr, I am in a pain flare at the moment!! I'm not sure what the heck has caused this flare but I suspect it is a delayed reaction from when my Physio's and Orthotic Doctor was manipulating my leg, trying to get it to go into the splint.

Friday night, I was sat down on the couch when all of a sudden, a huge, sharp pain came in my hip. It was so bad that I was crying in pain. What made it worse I think was the fact that I don't normally have any pain in my hip, the pain is just to my knee and also I didn't get any warning what so ever, it just came on straight away. My mum gave me some Ketamine to see if that would help but even that didn't work and it didn't even make me all giddy like it did the first time. When my pain gets too much, I pass out which is, according to my doctor, my bodies way of trying to cope with the pain. I have passed out a few times this afternoon and it is a scary feeling.

The pain in my hip feels has though my muscles are cramping a lot. My mum massaged the area that is tender yesterday and she said it felt like there was a lot of "knots" in it. I'm not sure if it's the RSD spreading up my leg or what, all I know is it hurts a whole lot!!

Hopefully it will be better for tomorrow, if it doesn't I am going to speak to my PM Doctor and see if he can suggest anything.

Pain, Pain, Go away.....

My First Day at the New School Centre

Today was my first day at the new school centre. Everything went fine, although I was really exhausted afterwards but that is only to be expected!!

All of the other children and staff are really nice, helpful and friendly. When I was going into the centre, all of the children shouted "Hi Alison, How are you today?", it was so strange has I got a better reception from them than I did from my so-called friends that I have known for years!!

Today was a "Getting to know you session", the teachers asked us all lots of questions that we all had to answer so that we knew a bit about eachother. There are only 6 other children at the centre although a new boy is starting this coming Monday. After we got to know eachother, we all sat down and read the local newspaper. This I am told is something that they do every day to make the children have a better understanding of what is happening near us.

After we read the newspaper, we went and did some work. The teachers asked me to do a Coat Of Arms and to do some drawing. After about half an hour, we then all got to have a break. We were allowed either tea, coffee or hot chocolate and toast or buscuits free of charge!! You don't get that in school!!! We had about an half an hour break and then we all returned back to doing out Coat Of Arms and then stuck it on the wall. Seeing has it was Friday, the teachers allowed us to have some free time. Lots of the children went into the gym but me and another girl that couldn't do sports has she has ME played the game, Guess Who which was nice. We also had a good chat to oneanother.

The teachers wanted to introduce me gradually into things so today, we didn't really do much work and writing. One thing I like about the centre is that all of the children treat eachother equally and don't judge oneanother. Even when my leg was really badly shaking, non of the other kids sat and stared and laughed at me - it was sort of like they had been told what to expect.

On Monday a women is coming in to help us with our Self Confidence. I have always been really shy but since developing RSD it has took a real beating and gotten worse. Hopefully the women will be able to help me, she is coming every Monday for 40 weeks to work with us all and do a course. At the moment, I am only going to the centre Monday's, Wednesday's and Friday's so that I can gradually ease into things and get a break inbetween sessions.

I'm going to go rest has i'm tired but overall it has been a good day (except the pain and spasms but we wont go there just yet)....

School Stuff

We had a meeting this morning with my School. Me and my mum went to a centre around 5 miles away from where we live to see what it looked like and also if I would be able to go there and do my work instead of having to go to school.

The centre is really nice and pretty big. They have several rooms including a kitchen, computer room, indoor gym, tables to do your work etc. It is set out like a school but it is all in one building so you don't have to walk. The staff there were also really nice and friendly and very helpful, the introduced us to the kids and they seemed really nice and friendly.

After discussing things, the teacher said that if I wanted to go there that he couldn't see a problem and that I could start straight away if I wanted!! I couldn't believe it, I was so shocked!! We spoke some more about things and eventually decided that it looked really nice and that I wanted to go. I start this coming Friday ... I can't believe it!! I am so nervous and excited at the same time, it's surreal!!

The teachers were really interested in what was up with me and we explained a few things to them and they said that they would work around me and if I don't feel well on a particular day, that is fine, we just have to call them and let them know. If I don't feel well and start to feel better after a few hours I can also go in a bit later if I wanted to.

At the moment, I would just be going to the centre on a Monday, Wednesday and Thursday so that I get a rest after and so that hopefully I wont end up in a major flare. The centre can arrange for a taxi to pick me up from my house free of charge if we wanted but at the moment, my mum will be taking me there and back until I get used to it. There's only about 10 kids that go to the club and 3 staff so I will get a lot more one-to-one work than I do at school.

The teachers explained that we could either arrange it so that the school send me work, which would be fun has it took 6 months for them to send me any work or I could drop out of school and they would set all of my work. My mum feels that it's better if I drop out of school and allow them to arrange my subjects so that is what we are going to do, for now anyway. The money also goes straight to the centre so at least it isn't going to the school.

Wish me luck for this coming Friday!! ....

Today is Bonfire night so we are going to see some fireworks later although I will only be staying in the car. It should be fun though!!

Today's Appointment

I had an appointment today with my Neurologist. Before I went to see my Neurologist, I was supposed to go to my Children's Hospital to see the Orthotics Doctor to collect the splint for my leg. The traffic was really bad on the way to the hospital (probably the worse I have seen it), so we ended up missing the appointment. Because we missed the Orthotics appointment, we had to wait about an hour for my Neuro appointment so we ended up having to go into the Starbucks near the hospital for a smoothie (yum!). My mum was really not happy about missing the appointment. We are going to have to see if the Orthotics can take the splint to my Physiotherapy session on Thursday; I really hope they can.

After enjoying a nice smoothie in Starbucks, we went to see my Neurologist. My Neuro is really nice, I saw him before I was diagnosed with RSD and he was the Doctor that recognised my condition and got me a referal straight away to my PM Doctor. We went to see him about the really bad, myoclonic spasms in my leg. The last time we saw him (back in June), he said that if the spasms didn't settle down any, he would prescribe me a med called Keppra which is used a lot in people with MS or Epilepsey. My Neuro took a good look at my leg and noticed straight away that the Dystonia (foot rotation) hadn't changed any. He said at this moment in time, he doesn't want me to try and other medications as they could potentially make me worse.

My PM Doctor said that it might be an idea to use Botox in my leg to try and get rid of the Dystonia so we spoke to my Neurologist about it and he said that the best person to see would be an Orthopaedic Surgeon however he thinks that because of the complications I have had from the 2 nerve blocks I have had, the Botox could make me worse or send me off my balance. He explained that the Botox could paralyse the muscle that is working overtime, but it could make the other muscles in my foot worse or weak also. He said not to dismiss it completely but if we do decide to try it to give it some serious consideration.

The spasms in my leg are a lot worse than they were when I first finished the Physio program in July and my Neurologist thinks that that is because of the flare of the RSD in my arm. He feels that my body is reacting to the pain in my arm by causing something else to happen (nice, huh?!)

I have to go and see my Neuro again in March or April next year however if the spasms don't settle has my arm gets better, we have to get straight back in touch with him to see what he can suggest to try and help. My Pain Management Doctor also keeps in touch with him a lot so he will keep him updated also. My Neuro feels that the best thing to do at the moment is to continue doing my exercises at home on a daily basis and also go and see my Physiotherapists every week.

For those of you that haven't seen the spasms in my leg, here's a video ... http://www.youtube.com/watch?v=xIXakErNBpE
http://www.youtube.com/watch?v=qE_OwuilOew

Have to go and rest has my arms hurting a lot ...

Sooo Tired!!!

I am so tired. I haven't slept at all all weekend and I feel so drowsey and groggy. I think I can't sleep because of the pain and also because I can't lay on the side I like to because of the pain in my arm.

I really hope I can sleep tonight has we have a busy day ahead of us tomorrow, I have to be at the hospital for 9.30am (and I am not a morning person!!) to collect my splint and then at 10.20am, I have to go and see my Neurologist about the Myoclonic Spasms in my leg. The spasms are coming back a lot worse than they were when I finished the Physiotherapy program now, i'm not sure why. Hopefully my Neuro will have some answers.

Must go and rest .....

Ketamine

When I saw my Pain Management Doctor on Wednesday, he prescribed me enough Ketamine to last about 7 days to see if I got any pain relief from it.

I took my first Ketamine last night because the pain in my leg and arm was really bad, probably because of the bad weather that we are having at the moment. I took 30mg of Ketamine which is the dose my Doctor suggested.

Within about half an hour of me taking the Ketamine, I felt really funny, as though I was really drunk (i've never been drunk but that is the closest thing I can relate it to). I was laughing at every single thing, even though it probably wasn't funny!! The Ketamine took my pain from an 8 and half on the pain scale to about a 6, the oral Ketamine doesn't work as well as the epidural but I am thankful I got some much needed relief, even though I had the strange side effects!!

It was kinda scary because I knew what I was doing but couldn't control myself or stop myself from doing it. My Doctor said that Ketamine works in a similar way to the Date Rape drug and I guess he is right!!

Hopefully the next time I take the Ketamine I wont have those side effects has I think I was driving my mum a bit mad!

Brrrrrrrrrrrrrr!!!

Brrrr!! You can really tell it is winter here!! It has done nothing but rain all day and of course, it has made the pain in my arm and leg sooo much worse!! It looks so dark and miserable outside and there is no sign on the rain stopping yet!! I am absolutely dreading the really bad winter months. Thankfully since I got RSD, we haven't had a really bad winter but according to the weather forecast (if you can actually trust it), we are in for a bad winter this year - yuck!!

London got some snow yesterday, my mums friend has gone with a load of kids and she said it was really cold!! Thankfully we haven't had any snow ... yet!!

Rain, rain, go away, come back ..... never!!

Family Argument

We had a family argument last night. We have been having a lot of issues for about 18months now trying to get my grandparents to understand what RSD is and show that they actually care.

I wasn't involved in the argument thankfully, but it was about me. My dad went to go and see my grandma and grandad (his mum and dad) last night and he said all they talked about was their friends and the rest of our family. It took my grandparents half an hour to ask how I was and my dad said "Oh, eventually you do ask how Alison is!!" My nanan said "Well, what can we do to help, there's nothing we can do" so my dad turned round and said to her "It doesn't hurt you to call and see how she is, you know that she is in a major flare and have never once asked how she is", my nanan then made some sarcastic comment so my dad walked out of the house and slammed the door!!

When my dad got home, he was so mad with them. I knew he was upset but never thought he would say anything to their face, he is like me, it takes him ages to say something to someone. I have mixed feelings at the moment, half of me is sad that it had to come to that but the other half of me is relieved that my grandparents now know that I am upset with the way they have been treating me.

The ball is in their court now, it's up to them to get in touch with me. If they don't get in touch at least I will know where I stand.

It is so awful that this monster of an illness can destry families like this. Me and my grandparents used to be sooo close and now look at us ....

Sick of All this Pain

I am really sick of all this pain now. It was bad enough having constant pain in my leg but now I have it in my arm even the simpelist thing like getting dressed is a huge challange and REALLY painful.

The pain in my arm is the worst it has ever been and it feels has though my arm is going hypersensitive. The pain doesn't feel like RSD pain but then again it never did, it feels as though my bones are aching and I have pins and needles in my fingers sometimes. I tried getting in the bath tub yesterday and the pain was unbearable, it felt has though someone was pouring petrol all over me.

I have been so close to going to hospital and having it checked out but my PM Doctor says it's just RSD and I don't want to waste the Doctors time when they have patients to treat that are worse than me...

OUCH!!

I really think my arm is going into another flare. Over the last few days it has been hurting quite a lot and yesterday I noticed that the area near my wrist was coming out in a big bruise. Whenever I press on my arm, I get a really sharp pain.

I don't know whats causing this flare; the weathers quite nice, I haven't knocked or injured my arm, in fact I can't think of anything that I have done that could of caused it to flare, the only thing I can think of is stress. Who knows?

I always have pain in my arm but usually it is just mild thankfully (about a 2-3 on the pain scale), today it is more like a 4-5 - thankfully it isn't as bad as my leg though!!

It's like my body always seems to know when I have something important coming up as I always end up in a flare!! I am going to do my exercises, keep moving my arm as best I can and hopefully it will improve soon!! When I go in hospital tomorrow, I am going to ask the Anaesthatist (sp?) to put the canula in my good arm, rather then risk making things worse (my RSD doesn't agree with needles what so ever, when I had the nerve block, I lost my balance and co-ordination and when I had the Ingrown Toenail removed, I ended up with severe spasms from my hip). The good thing is, I am seeing my PM Doctor and PT's tomorrow so hopefully they will be able to take a look at me and give me some advice.

Have to go for now, typing is hard and very painful!

The Start of Another Week!!

I can't believe it's the start of another week already, this weekend seems to have gone so fast and I haven't even been out of the house!!

The only thing I have done this weekend was watch TV and spend some time on my laptop, I didn't feel like doing anything else and figured that I needed to rest and try and take care of myself for once. I love Sunday's on the TV has my favourite Soap program is on; Hollyoaks. It is a really good English program and I absolutely love watching it!!

I am not feeling too well today, I am having a high pain day and have quite a lot on my mind. I think my arm is going into a bit of a flare again has it is aching a lot today and starting to bruise a bit near my wrist. I am going to do some of my exercises on it so that hopefully it doesn't get any worse. My mums allowed me to take the day off School today because she could see I wasn't feeling too well (I looked really pale) and thought it was better that I try and rest for my procedure on Wednesday (I am so nervous!)I can't concentrate properly today so going to School would just have been a waste of time ... Hopefully I will feel well enough to go tomorrow.

I am so nervous about my upcoming procedure this Wednesday, I think my mum is too. Every time I go to have a procedure, even if it is minor something always seems to go wrong and I come out with some kind of complications. Hopefully this procedure shouldn't cause any complications because they are not (hopefully!) injecting into my RSD leg, they are just going to manipulate my leg into a natural position and then make a splint. Still, I can't help being nervous, I think it is normal with this illness to be scared about things. I am trying to stay positive and hope that the splint will work, if it doesn't I have to have a full leg cast put on in January and I really don't want to go down that route unless we have to.

I am going to rest now has I don't feel well ... wish me luck with my procedure this coming Wednesday (the 22nd)!!

Another Week's Over!!

Well, another week is over thankfully. I have all the weekend to relax ready for School again on Monday. The Weekends seem to go really fast but the School week just seems to go really slow!!

I took the day off School today has I wasn't feeling too good. I didn't get any sleep what so ever last night because of the pain in my leg and tooth - I was sat up on my Laptop at 3am English time!! Because the pain was so bad, I took a couple Tramadol's hoping that they would at least make me sleep but they didn't!! They used to always make me sleep so I can't figure out why they wont knock me out now ... I guess my body has just got used to it.

My mum recieved a call today from my Pain Management Doctor's nurse - I am going into hospital this coming Wednesday (the 22nd). I will be taken to theatre, have my leg manipulated and then a splint moulded to the shape of my foot ... the splint will then take about 2 weeks to make. Thankfully I am just staying in for the day - we have to be at the hospital at 8.30am and I am going to the Operating Room at 9.30am.

Even though I didn't go to School today, I still had my Home Tutoring. I didn't really feel up to it but I don't like missing so much School Work. My tutor came this after for about an hour and did some Math and English with me. In Math we are doing Algebra - I can't figure out how to do that at the moment but I have only just started doing it so hopefully it will sink in soon!! In English, I had to read a poem and then answer lots of questions about it which was pretty easy!! My mum emailed my teachers at School and they have arranged for me to do some ICT (computer) work at home, I am pretty good on the computer so hopefully I should be able to do everything that I need to do!!

I will only be at School 3 days at the most next week has Wednesday I am going into hopspital and Friday is a teacher training day. We are then off for a whole week for October Half Term. That should be nice has I will be able to have a break from everything!!!

I really hope I can sleep tonight ...

Dentist Appointment

I had a Dentist Appointment today. The Appointment REALLY hurt! The Dentist gave me a lot more aneasthetic then he would in a normal patient has having spoken to my PM Doctor he said that with most of his RSD patients he suggests to use more aneasthetic to try and combat any side effects or reactions. The Aneasthetic didn't take unfortunately. The Dentist was going to just give me a filling but explained that the tooth is a lot more infected than it was a few weeks ago when I last saw it. The Nerve in my tooth is exposed into the air (Hence the reason why I have been in so much pain) and the Dentist had to keep sticking needles into my nerve - that really hurt and I nearly shot through the roof!!

My Dentist explained that because my tooth is so badly affected, I have to have a root canal (I am really dreading that!!), he explained that he would of extracted the tooth but he wants to try his best to save it if he can. My Dentist could see how much pain I was in so he has just cleaned the tooth and dressed it and also put a temporary filling in. I have to go back in 3 weeks for another filling (my teeth seem to chip very easily since developing RSD) and then I have to go back about 3 weeks after that to have the root canal.

My Dentist wanted to see how I react to this aneasthetic before doing anything else because of me having RSD. Hopefully the pain will settle down soon - I have just took a tramadol and it seems to be helping with the nerve pain in my tooth a bit (I just wish it would help the pain in my leg!!)

It's all fun to say the least ...

One for Wednesday

My mum allowed me to take the day off School today because i'm not feeling too well. I haven't been sleeping at all for the past few nights - last night I was sat on the computer at 2am talking to one of my RSD friends from the forum, Lauren (thank you so much Lauren for keeping me company!!). I have tried everything to try and make me get to sleep but nothing seems to be working at the moment. My nurse in London was supposed to be speaking to my PM Doctor and getting back to us but she never got back in touch and she said she would be in touch last week!

I emailed the School Psychologist last night to keep her up to date with how I have been getting on at School and also to share some of our concerns. I love my School Psychologist as she is really nice and helpful - she was the person that made me want to become a Psychologist, I just wish I got to see her more - I only see her about every 3 months but I can email her whenever I need to! She got back to me almost straight away and said that she is going to our School tomorrow so she is going to speak to some of my teachers about some of the issues that we are having to see if they could get anything changed to make things a bit easier for me. I told her most of the problems that I am having at School such as teachers not understanding, my friends never coming when they are supposed to, homework, noise affecting my pain levels, walking from lessons to lessons and the chairs in Science hurting my leg too much. Hopefully we will be able to get things sorted a bit better soon. My Psychologist is really good so I am hoping she will be able to get my teachers to make some changes that may help!! I will keep you all updated when she gets back in touch with me.

My mum spoke to her boss at work today about a Club that the Youth Club works for called 'Anxious and Phobic' or something like that. She spoke to someone at her work about it yesterday and they said that I wouldn't fit in however her boss said that it is quite a good club and that most of the children there are really nice and friendly. The Club runs 4-5 days a week for 3 hours per day and most of the kids that go there have some issues about school such as, they have been out for a long period of time and having trouble getting back into the swing of things (like myself), are being bullied, dislike school etc. I emailed my Psychologist about it to see what her opinion is. I really want to go to school but I just don't think it is going anywhere near as well as we expected it to...

My mum has the workmen in today. They are building an extension for us so that I don't have to keep going up and down the stairs whenever I need to use the toilet. The Builders have accidentially cut into the main water pipe for the whole of our street so no one on our street has any water now!! When the Architect drew the plans, he didn't put where the main water pipe was! The Builders are now 2 days behind schedual as a result!! I hope we can get things sorted soon!! The Workmen will be working on our house for about 10 weeks, my mum is also having a new Kitchen so they are fitting that for us.

I am pretty stressed today. I have so much going through my mind that I am fit to burst!!! I went to see my grandparents yesterday to give them the letter that Felicia had so kindly wrote for me (thanks so much Felicia!). My granparents NEVER asked how I was or anything, when I told them how I was doing, they would change the subject straight away. It really annoyed me. I didn't say anything to them face-to-face, I just gave them the letter, explained a little about Felicia and then left. The minute I got into my mums car I burst into tears, my grandparents just don't understand anything! I was crying for a good few hours. I really hope the letter will make my grandparents understand and make them open their eyes but if it doesn't, Felicia and myself tried our very bests so there is nothing else we can do. They haven't gotten back in touch with me yet, I figured that i'd give it a few days to let it sink in as it may come as a bit of a shock. If they don't get in touch then I will go and see them and tell them exactly how I feel and try my best to move on.

It wont be easy but sometimes it's better to try and move on...

I have to go to the dreaded Dentist tomorrow - yuck!! I have to have a filling and then I have to go back 2 weeks later to have yet another filling and a tooth pulled out. I have absolutely dreaded going to the dentist ever since developing RSD - it just scared me!!

Wish me luck!!

School and Home Tuition

I have just got in from School and I am soooo tired, I haven't been sleeping well at all over the last few days and that in itself is stressing me out. I came home from school about 30 minutes early because I was so tired and non of my friends turned up at Break again to sit with me. My friends are supposed to have a Pass which means that they can come and sit with me every break, I tell them to meet me in the School's Reception but they never do for one reason or another. I always knew that getting back into the swing of things with my friends would be hard but I think it's a little bit unfair that they don't come and sit with me when they are supposed to!

Today in School I had Geography and Science. The Teachers wanted me to go upstairs for Geography but I told them that I couldn't because I was wobbling all over the place even with 2 crutches!! I ended up working in the School's library and a teacher came and sat with me. We have a Science exam coming up soon which is pretty important has it dictates what sets we will be in next year at School.

My mum is talking to her boss at work today about a group that the Youth Club run called "Anxious and Phobic" or something like that. The group has about 6 children and runs 4-5 days a week for 3 hours a day during school hours. Most of the kids that go there have either been out of school for a long time and having difficulty coping with going back to school (like myself), are getting bullied at school, don't want to go to school or are scared of school for one reason or another. The Club is set like a proper School setting and you get a lot of one-to-one work which I think would be useful. Don't get me wrong, I want to go to school but we just feel that it isn't going as well as we expected, I am finding it stressful and most of my friends don't understand. Hopefully that club would alow me to still get my studies done and socialise with people who understand.

Yesterday my Home Tutor came to help me with my Homework so that was a bit off stress off my shoulders thankfully!! I like my tutor has he explains things really well unlike most school teachers! He is coming again tomorrow to help me.

I better go and take a nap now, I am so tired!!

Physiotherapy (PT) Appointment

So yesterday I wasn't feeling too good but I had to drag myself out of bed to go to my regular Physiotherapy Appointment.

It was an absolute nightmare trying to find a parking space! The hospital that I go to is really big but it only has about 25 car parking spaces so you always end up having to park a long way away!! Thankfully we have the Blue (Handicapped) badge so it means we can park on the road! The appointment itself went OK, although it was REALLY painful! The Physio's mainly did a lot of talking with me about how I have been getting on at School, what sort of exercises I have been doing etc. I exlained to them that I have been struggling a bit with School and that when my pain gets really high I have difficulty concentrating and find myself staring into space.

One of my good RSD friends, Felicia (the girl who sent the lovely fridge magnets for me) said to try a TENS Unit has they can help take the edge off the pain and that maybe it would reduce my pain to a more "toleratable" level. Myself and my mum spoke to the Physio's about the TENS Unit and they explained that they don't use it that often in RSD patients but they have read some research articles that states that it can sometimes reduce the pain. The Physio's said that it was a really good idea and that my PM Doctor had just purchased some TENS Machines so hopefully we would be able to borrow one of those. The Physio's said to experiment with the TENS at first to find out where it works the best but NEVER to put it directly onto an RSD limb. I think that I am going to give the TENS another shot, it can't do any harm and it says that it is really safe to use!!

The Physio's are hoping that on the 22nd October I will be able to go into hospital to have a splint moulded and my leg manipulated under general anaesthetic. My mum asked the Physio's if I was definitiely going into hospital on that day but the Physio's explained that they weren't sure has they wont know until next week if the Operating Room is available. Because I am not having an operation has such (I am just having a manipulation) it may be that someone else has to take my place if there's is an emergency. We will probably know next Friday if I am able to go into hospital on that date.

The Physio's did a lot of different exercises on me, I had to do some Bridging which is where you have to bend your knees and lift your bottom up, that is really painful!! The Physio's wanted me to try and do some Bridging just putting weight through my RSD limb but that was waaay too painful and I kept falling all over the place!! My Physio's got me onto the cross trainer (it's a bike where you sit and peddle - similar to a normal bike) has they wanted to see if I could apply any weight through my RSD foot. The only place where I was putting weight was through the ball of my foot - the straps on the bike were really hurting my legs and now I have a load of blisters (my skin breaks easily because of the RSD).

I don't have any Physio next week as we can't make the appointment that was available but I have been given a load of exercises to do!!

I'm still not feeling too good today so my mum allowed me to take the day off school - I hate missing school but I would rather stay off and take it easy than push myself too hard and end up in a massive flare!! I haven't been sleeping very much so I don't think that has been helping either has I am just physically exhausted!

Not Feeling Too Good

I'm not feeling too good today for some reason. I am soooo tired has I haven't been sleeping that much over the last few days because my pain and spasms have been really bad. I just wish I had something that could help, even a little with the pain. I have come off all of my medications has they weren't helping me and the side effects were pretty bad. My mum spoke to my PM Doctor and he said that the only medications left for me to try were either Ketamine and/or Methadone but he doesn't want to put me on those unless he has to because of my age and hormones etc.

My mums allowed me to take the day off school has she could see how much pain I was in, it's not that often I complain so when I do my mum knows it's pretty bad!! Hopefully the school will understand, they can't expect me to go to school all the time, it is just way to much for my body right now. Hopefully I will feel better tomorrow, I hope I will has I have a stack of tests coming up that I need to do.

I have my regular Physio (PT) appointment this afternoon, I don't really feel like going but I need to go as we need to find out if I am still going in hospital on the 22nd October for the splint moulded whilst I am asleep.

I really hope I can get to sleep tonight and feel better for tomorrow, I HATE feeling like this!

School and Home Tuiton

I went to school for 2 hours today. I am so tired now, I really hope I am able to sleep tonight!!! My leg is really aching, even though I have to use crutches my leg still hurts a lot, whenever I try to put any weight through it I get a really sharp, bad shooting pain.

I had Science and Geography today at School. In Geography we are learning about the Digestive System which is really interesting, I love Science and it is my ambition when I am older to become either a Psychologist or a Physio (PT). This disease has really opened my eyes and made me want to help others who are in the same situation as me. In Geography we had to do a test and I found it really hard!! I have a lot of difficulty concentrating and forget things really easily. Half of the questions in the Geography test I didn't know as I was out of school for almost 2 years!!! I spoke to my teacher and told him that I didn't know any of the answers because I have been out of school for a long time and he just looked at me stupid - he is a new teacher so doesn't understand what is the matter with me!!

At Break I was supposed to go outside with some of my friends to socialise but my friends didn't turn up!! I was sat in the School's Reception for 40 minutes on my own!! I saw the Disabillity Teacher (she looks after me) and she asked if I was OK, I told her I wasn't too bad but that my friends hadn't come for me, she said that she would go and find them but she never came back!! I really hope that the "newness" of me going back to school isn't wearing off now and that my friends are still going to help me.

Whilst I was waiting for my dad to come and collect me, I saw my Math teacher and she told me that I got a level 4C in a test that I did!! I am so proud of myself as I thought I did soooo well on the test as I didn't answer that many questions!! My teacher explained that the level I got was what most of the other kids got and they haven't been out of school for nearly 2 years!!

After school I was really exhausted so I came home and had a nap, I never realised how tiering school is!! This afternoon my tutor came to help me with some things, I really like my tutor, he is more of a friend than a teacher!! He did a lot of Algebra work with me, I find Maths really hard because of my Dispraxia but my tutor finds ways to try and work around that which is good. He is coming again tomorrow to help me with any homework that I have .... I have a lot of it!!

So Tired and stressed!!

I am sooooo tired, I didn't get any sleep last night what so ever due to what happened on the Forum, it was stressing me out way too much - I know I shouldn't let it get to me but it really has. I just can't believe that someone could be so rude and say something like that to me and the others!

My mum's just emailed me and told me that she spoke to the people at work about what was said on the forum yesterday and they were absolutely discusted. Where my mum works is a Youth Club and it has a lot of computer experts there so my mum asked if there was any way we could ban the person that said those rude things about me from the forum forever. My mum's friend knows quite a lot about computers and he has shown my mum a way to ban her from the forum forever - hopefully that way I wont be as stressed out and the forum will be a safer place to be!!

What is it with Some People?

What is it with some people that no matter how hard you try, it still isn't good enough?!?!

As most of you know myself and Wendy (a really good friend of mine with RSD) run a forum together called 'RSD Friends' along with several other RSD'ers. We have tried our very best to make the forum as safe and relaxing as possible but today I got a REALLY abusive message from a member of the forum. I had emailed this member as myself and Wendy had noticed that she spent a lot of time "lurking" on the forum but didn't actually contribute or make any posts. I therefore emailed her and told her to either stay posting or she would be banned from the forum, I didn't say anything nasty what so ever. Within about 10 minutes of me sending the email, guess what? A message appeared on the forum from this member! At first I thought, Oh good, she is finally deciding to post but then when I went and read the message she had written I was absolutely appauled by what she said!! Let's just say that there was a LOT of swearing in the message, nearly every other sentence had nasty words in it. This person knew for a fact that I was a teenager but said that I thought that I was f**king God and I thought I was so clever and this that and the other just because I run my own forum!! I in NO way think I am God, I am just simply trying to help others with RSD, what is wrong with that?

It's like no matter how hard you try, it still isn't good enough. If it wasn't for me, my mum, Wendy and Barb no one with RSD would have a forum to go to!! I am seriously thinking about whether to say "I have had enough" and just leave it. No matter how hard we try it still isn't good enough...

Aaargh - Homework!!

I have soooo much Homework to do for tomorrow and it is already 8.30pm in the UK!! I have finished doing some of my Homework but I still have my English, Math and Science Homework to do!! I started doing some of my History Homework earlier but somehow I ended up doing my English homework on the same sheet of paper!! I really don't know how people with RSD go to work and school full time - I am stressed already and I am only going for 2 lessons a day!!!

I never imagined that School would give me so much Homework to do when I have been off school for nearly 2 years and am only just starting to return back!! My teachers said that they wanted to make things as "Stress free as possible" for me, Um yeah, it really looks like they are doing that!! I think that we need to tell my teachers that all of the Homework is stressing me out too much, hopefully they will understand and allow me to take things easy.

I have my SAT's (important exams) at the end of this year so I really need to try and concentrate but I just can't keep my mind on things and keep forgetting everything which is way too stressful.

Hopefully we will get things sorted - I hope so, I really hope so!!

Understanding Chronic Pain

I, like most people with a Chronic Pain Condition, have been having a lot of trouble trying to explain to people just how bad RSD pain is and that it is the highest pain known according to the McGill Pain Scale. Because people can't physically see pain, they can only see the side-effects of pain, they don't truly understand just how bad it is. I usually get a lot of comments off people such as "It can't be that bad", "But you look so well!!" etc.

When I saw my Pain Management Doctor just over a week ago, he asked me how bad my pain was, I told him that it was really high and that it was an 8 on a pain scale of 0-10 (0 being no pain, 10 being the worst pain imaginable). My Pain Doctor then said something to my mum that I find REALLY true. He said, "When you hit yourself with an hammer what do you do"? My mum replied "Well I jump, scream and cry!", My PM Doctor then said "Well imagine having that sort of pain but worse and it doesn't go away, what do you think you would do?", my mum then replied "Well .... I would probably get used to the pain and it wouldn't seem quite as bad", My PM Doctor then said "Exacly, the pain that Alison (me) is in is that bad and has been there for so long that her body has kind of got used to it and that it just seems normal to her", he then went on to explain that it is physically impossible to jump, scream, shout, cry and yell because of pain and that after so long your tolerance to pain gets better.

What my Doctor said really made sense to me and my mum found it useful also. My mums been telling everyone that doesn't understand RSD the way my Doctor explained it and most people have said "Oh Yes, That makes sense, I never thought of it like that!!"

From now on, whenever someone doesn't understand what RSD is like, I am going to explain to them what my Doctor said.

Will it help make them understand? I don't know but i'm on a mission!!....

When Will I Be Normal Again?

When Will I Be Normal Again? That question has been on my mind for a while now. Will I ever be normal again? Will I ever be Pain Free again? I try my best not to think negatively about my life right now and try my very best to have a positive outlook on life but I must admit that it is getting harder and harder. I think all of the additional stress from going to school really isn't helping as it has set my pain levels up a lot. 'Normal' people just don't appreciate and understand how much effort even the simpliest task is with RSD. I try my best ... I really try my best

But...

I WANT to have a Pain Free Life
I WANT to do all of the things that 'normal' teenagers do
I WANT to be able to go to school without using Crutches or a Wheelchair
I WANT to be able to concentrate properly
I WANT to be able to walk normally
I WANT to be able to Run
I WANT to be able to play Sports
I WANT to be able to remember things
I WANT to be able to wear proper shoes

I WANT a lot of things but right now it seems as though I will just have to wait and make the most of my life. I can't just sit here and not do anything, I have to try my best and get some 'normality' back into my life.

I guess today is just one of those bad days. I am just sick of being like this.

My Baby

That sweet little picture above is a picture of my baby, Jack!! Jack is a Black and White English Springer Spaniel. We got him on the 16th October 2007 when our beloved dog, Ben died of cancer. I can't believe we have had him nearly a year already!! Jack never seizes to amaze me with what he can do and he always seems to bring a smile to my face even on those horrible pain days!! He seems to sense when I am having a high-pain day (which is nearly all the time) as he will come and lay down on my bed and just give me a cuddle - soooo cute!!

He truly is an angel!!

Return Back To School

On Wednesday (the 1st October), I returned back to School!! I haven't been able to go to school for almost 2 years due to my RSD, Hospital Appointments etc etc. At the moment I am only going to school for the first 2 lessons of the day as I get tired VERY easily and when my pain gets too much, I have difficulties concentrating and forget things a lot.

The transition back into School went mostly OK. Because I need additional Support, I have been dropped down to Set 3 (the middle set) in English and the other Chore subjects where I should be in Set 1 (the top set). The Science set that I was put into was VERY mad, all the other kids seemed to do was run around, shout, fight, scream etc etc. My mum spoke to my teachers about it as the noise was sending my pain levels off the scale and it was just too much for me! Thankfully my teachers agreed to swap me into another Science Set, the Science class that I am now in is sooooo much better and a LOT less noisy! I had forgotten just how noisy school is!!!

On Thursday, I went into Form (that is where we have to go to get our mark) and there was no seats left, the only seat that was left was next to my "friend". My Form Teacher asked my "friend" if I could sit next to her so that I could take some pressure off my leg as it was getting really painful and my "friend" replied "NO SHE CAN NOT SIT NEXT TO ME!!", I couldn't believe it when she said that and it upset me!! This "friend" of mine is somehow jealous of the treatment I am recieving, she thinks that she has RSD and when I was first diagnosed with RSD she would come to me and ask what the symptoms were, she would then go to her mum and say that she had the same symptoms as me!! She even went to see my Pain Management Doctor who said that she didn't have RSD and that she should stop faking it!! She says that she has RSD in her right knee, arm, back and teeth but yet she goes running around at school!! Who needs enemies when you have friends like her?!?! I am trying not to let what she said get to me as she isn't worth the time of day, the only thing that worries me is that she is one of those people who could cause a lot of trouble for you if she wanted to.

Most of my other friends are being OK thankfully although I do get the odd few who aren't interested and want to go and do their own things that I cannot possibly do. The thing that annoys me is those people that say "What is the matter with you? Why are you on Crutches? Why's your leg so badly rotated and why does it shake so much?!!" I know I had to expect that!!

Yesterday I had a Maths test and it was really hard! Half of the questions that I had to answer I didn't know anything about as I have missed so much school. I tried my best though so that is all that matters. My teacher said that they would take into acount that I have been off school for a long time anyhow. Because I have Dyspraxia, I have a lot of problems with Maths and need additional support and someone to help me.

After Break yesterday, I stayed for an extra lesson and watched the Shakespeare Play 'Romeo And Juliet', it was really good!! A Drama company had come into school to perform it for the whole of my Year Group. It was great has they had put a twist in the story and it had a lot more modern music.

I saw my Home Tutor yesterday after school as I have soooo much homework to do which is stressing me out!! I like my tutor has he is more of a friend than a teacher!! He is going to come again next week to help me with any homework I may have.

Here's hoping that I survive the next week in school!! My tutor said that I may have got by last week on adrenaline and that next week might be harder - I hope it isn't, I certainly don't need that!!

Thank You!!

Today I recieved a parcel that one of my good RSD Friends, Felicia had sent through the mail for me all the way from New Zealand!! In the parcel were a lot of RSD goodies including fridge magnets, stickers etc!! I am going to give some of the things that she sent me to my friends and family so that hopefully they understand what RSD is and are more aware of the ilness! Felicia really is an angel and shouldn't have gone to all of the trouble of mailing that through the post for me - thank you ever so much Felicia, love you!!

She is also writing a letter for me to my grandparents as they just don't seem to understand what RSD is - I never realised just how nice people can be, this girl has problems of her own including RSD but yet she is out there wanting to help others - she really is an inspiration!!

Thank you Felicia!!

Physical Therapy Appointment

I love that imagine, that is what I am like EVERY week During Physical Therapy!!

On Wednesday I had my regular, weekly Physical Therapy appointment. The Appointment went Ok although it was REALLY painful!! A few months ago, I really didn't get along with my Physical Therapists, I felt like they didn't listen to anything I was saying but that has really changed now thankfully and they seem to listen to EVERYTHING that I am saying and are also noticing things that I am not noticing.

The PT's said that my posture is really bad and when they checked my pelvis, they said that I had a load of knots and that I felt extremely tight. The PT's said that this was probably because of the pain I was in and that the muscles in my pelvis and hip could be spasming. They gave me a lot more exercises to do to try and release some of the tension in my pelvis. The exercises I have been given include Bridges (this is where you have to bend your knees, and put some weight through your feet whilst lifting your stomach up - that really hurts as I can't put that much pressure through my RSD leg!!!), Clams (this is where you have to bend your knees and then move them from side to side) and a load of others!!

The PT's also got me on the treadmil, I didn't really do anything, they set the treatmil to the lowest setting so I could try and tolerate it and all I had to do was try and walk. The PT's wanted to see how I was walking with my leg rotated out to the side so that they could see what they needed to focus more on. They said that I am putting most of my weight through my good leg (that makes sense as when I was on the WII Fit, it said I had 70% pressure through my good leg and only 30% through my bad leg) and that I don't seem to know where my centre of gravity is. They are going to try and work on that more during the next few weeks.

The PT's wanted to see if they could get the splint moulded onto my leg during Wednesday's PT session using just gas and air but they couldn't as the Orthotic Doctor was off sick. The PT's spoke to my PM Doctor and he said that I need to have my leg manipulated whilst I am asleep as it would be way too painful for me to have it done whilst I was awake. On the 22nd October, I am due to go back into hospital for the day and have my leg manipulated and a splint moulded onto my foot whilst I am asleep under general anasthetic. I should only be in the hospital for the day as it will take 2 weeks for the splint to make - yay!!

I will keep you all updated!