Hi Ali
Wow you are a buisy one arent you, i am so proud of the work you do in helping get the word out about RSD awareness.
I tell my friends I know that RSD poster child, it seems like we watched you grow up here these last few years Ali from a shy scared little girl, to a very informed young lady who is going to take on the world and make big changes.

What you are planning on doing on the 10th of October is huge. (you go gyrl.)

luv n' hugs,
Sandra

Dear Ali,

You are an inspiration to us all.

I'm so happy to hear you are settling into your new college classes and moving forward with your life.

Good luck with your up coming trip to the house of commons.

MsL

WOW guys, I don't know what to say other than thank you all SO much for the support and encouragment ... I really appreciate it - it's you guys who keep me going each day and I don't know what i'd do without all of your support!

I have a few days to myself now thank god lol! It's so hard trying to keep up with the new schedual but at least I am enjoying things so that has made it a lot easier!!

I have two assignments to do this weekend which will count towards my College Course. One's on Communication and the others on Child Care. They aren't due in until Wednesday but i'm going to make a start on them now so that I can take things easier and not rush as much hopefully. I did an assignment in College the other day that my tutor is going to mark and then we can see how we did so i'm hoping I did well with that.

We have a parent briefing at College and then we are going on a trip to a Care Home soon and an Hospice. I get a break the end week in October when i'll be going to the House Of Commons so i'm looking forward to that!

My Doctor emailed my mum yesterday and said that my Physical Therapist is probably going to go to the House of Commons with us and she is going to meet us there ... I think she's really interested in what they have to say. We still aren't sure at the moment whether we have to pay the travel expenses - my nurse said that the MPs should pay for them as they can't expect disabled children to travel down on their own but it doesn't look like they are going to.

I wrote a story about how I got on with desensitization therapy for a girl at my childrens hospital and my doctor wants to put it into the British Pain Society's newsletter. He wants to take some pictures of me and then it should be published soon ... I'll try and post a copy on here once we recieve it!

Hope4thebest - I can't tell you how thrilled I was to hear that you are starting Saturday classes - how are they going? Hope they are going well! I know it's not easy so I really admire you for giving it a go! I was shocked to hear that I inspired you to start LOL - I never even thought I might do that! Hope all is well with you!

Loretta - Sorry to hear that you have had the flu. I had the flu and Pneumonia shot last year on the advice of my Doctor and was pretty ill after it (I got the flu and couldn't get out of bed for over a week). Lots of my friends in College have had the swine flu. I'm not sure if I had it a few weeks ago but I was really ill and had an high temperature and couldn't do anything for about 5 days but thankfully, it passed. I'm not sure if I will be getting the flu shot this year ... I think we will speak to my Doctor and see if he recommends it. They aren't doing the H1N1 shot that much here at the moment (they only seem to be doing it in over 65's and young children) but I think we will mention it to my Doctor and see what he says seeing as I have RSD and mobility issues.

Thanks so much again everyone for the support ... it means a lot to my mum and I! I will definitley keep you posted and let you all know how we get on in the House of Commons!

Hope everyones OK!

Hi Ali!
It's good to hear from you and to know that your goals and plans are still in place! Doors seems to be opening up for you and these good experiences are so well deserved! You've helped so many here on the boards, and you continue to serve others with your kind heart and boundless understanding and empathy.
My Saturday classes require much work and preparation!...the class is for eight hours each Saturday for 8 weeks..We have alredy completed 3. It is arduous and rather tiring for me as I also work Monday through Friday.
As rigourous as my week is, I am glad Idecided to take the class, and remember, you were my inspiration, and you still are!!!!
I am finding, that the concept of pacing has become more important to me than ever!
Keep us posted on all your activities and the upcoming events at the House of Commons! Take care, dear Ali !!
Hope4thebest

Hi Alison,

You're the first person I've ever come across from the UK who has RSD! I live in Scotland. I'm at university and I think it's great that you manage to go to college and cope with all the work that brings. I know how difficult it can be sometimes when the RSD just won't let up. Best of luck with your placements (I do those too), just take it easy and do things in your own time. A care home can be hard work. Let me know how things are going, I'd be interested to hear about the House of Commons visit, and how you are coping with placements/college.

Look after yourself.

Alli, i just wanted to tell you that it is so wonderful to hear from you. you are doing so much and still giving back so much. I know you are still having a lot of pain- But still, your drive and ambition is so impressive. I think you are a very special person and so brave. I feel we are very lucky to have you here on the site. I am sorry to hear about the loss of your great uncle and the pain of remembering the loss of your grandfather. I lost my Mother not to long ago and I know personally how awful the pain is..You have had alot to bear already this year. Thank you for staying in touch Ali, it is wonderful to hear how things are going in your life. Sincerely, cz

Thank you all so much again for the support, I really appreciate it! It is hard trying to balance the RSD as well as school but somehow, i've got to try an as I will have this for life probably unfortunatley!

I had my parent briefing at College the other night where they told all of our parents how we have been getting on. It wasn't really for indiviual children so the teachers didn't talk to us all seperately but it was interesting and they said they were happy with the work we were all producing so that's good!

We went to a Care Home today which was really good. The teachers wanted us to go so we know what to expect with placements. We learnt a lot from it that we didn't know and even got to talk to the old people and got to play a game of bingo with them! The lady that I was working with got a full house and she was so sweet saying that I could have the prize as I was marking it all off for her! When we had to go, they were all thanking us for coming and saying they wanted us to come again. I think they liked it as they don't see many people that much so it was a nice little treat for them!

We got all of the details today for the House Of Commons meeting which is next Tuesday. It'll last 2 and a half hours and our local MP is coming to talk to us also. I'm hoping that we'll be able to get school's/colleges etc to realise how hard it is doing edication with a chronic pain condition and get them to offer more help. Hopefully Gordon Brown will be there too so that will be good!

I'll let you all know how the meeting goes next week!

Thanks again for the continued support and i'll keep you all posted!