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!

A Poem That I wrote

This is a poem that I wrote a few weeks ago when I couldn't sleep due to high pain levels. I am trying to decide whether to give it to my grandparents, friends and other family members that don't understand what RSD is - I hope you all like it!!

Why wont you understand?

How can it be that just one day
Could change my life forever
Steadily growing, burning fire
Within me, leaving never

A life so full of friends
A family who'd unite
I hope they'd always be there
To help me win this fight

What started out so positive
Slowly fell apart
School and friends just disappeared
My family broke my heart

My pain is real and constant
Although others aren't so sure
Why should I have to prove to them
This monster has no cure

I sometimes wish I had the power
To let others take my place
To become me for just one day
And see the frustration on their face
Frustration that they cannot share
In normal daily life
Why wind and rain and sunshine
Cut through them like a knife

I wish my life was just like theirs
Without the need for help
Independance regained, my life restored
Without the need for help
Chronic pain is "secret"
A condition hid away
From those who chose not to look
One I choose not to display

My pain is real, forever here
A reminder of the cost
Of fate and events conspiring
Of my independance lost

Just because I don't look ill
Because i've come this far
Remember that it hurts to not
Ask me how things are
A simple word can mean so much
More than you'll ever know
To know you care, you're always there
Though I have still so far to go.

Small Introduction

Pictured above is me, my Physical Therapist's, Occupational Therapist and Nurse. This photo was taken not so long ago when I gave my local Children's Hospital a cheque for all of their contiuned support in treating my battle against RSD. I am in the middle with the cheque, to the left of me is my Physical Therapist, Sam, next to Sam on the end is my PM's Nurse, Julie, to the right of me is my other Physical Therapist Suzanne and next to Suzanne on the end is Lydia, my Occupational Therapist.

My name is Alison, I am 13 years old and I suffer from RSD (Reflex Sympathetic Dystrophy) in my left leg and right arm. RSD is a rare, chronic pain condition.

I developed RSD on the 20th March 2007 when I was just 12 years old after I fell down some steps and sprained my left ankle. I was finally diagnosed with RSD in July 2007 by a Pain Management Doctor after 4 long months of things getting worse and worse as each day went by. When I was diagnosed with RSD, my PM Doctor performed a Guanethidine nerve block in hope that it would at least reduce some of my pain but unfortunately I suffered from complications from the block and developed severe balance and co-ordination problems (whenever I tried to walk, my leg would just through itself out in front of me and I would have to have my mom take me almost everywhere!)

In September 2007, just 2 months after I was diagnosed with RSD, my PM Doctor prescribed me a drug called Amitriptyline as I wasn't sleeping due to extreme pain levels but once again my body reacted to the drug and I suffered from a side effect of blurred vision. I wanted to try and stay as independant as I possibly could, even though my vision was blurry and I couldn't walk or stand on my own without support, so I tried to get out of the bath tub on my own. Unfortunately whilst I was trying to get out of the bath tub, I knocked my right arm and within 2 hours my arm had begun to swell up really bad, become painful and lock into a fist. My mom called my PM Doctor and he asked me to come and see him the next day and I got the news I was dreading - my RSD had spread to my right arm!!

Thankfully, my arm is a lot better than it was now although I still have some moderate pain and have to do a lot of exercises on it to keep it moving.

At the moment I am trying my best to stay positive even though it is hard at times and I decided to create this blog so that I can express my feelings and so that people can keep up to date with how I am doing!!