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 .....