Update
 

Hi everyone,

I haven't been on the forum much lately so am sorry for that - things have been pretty hectic here lately! I think about you all everyday though and hope you are all doing well!!

I've finally got a moment to myself so just thought I would update you all on what has been going off with me.

As most of you know, I started College at the beginning of September. It is pretty hard work but so far, I have been enjoying it!:)

I am doing a Course in Society, Health and Development and it is really interesting. Most of the other Courses that are available were just for Health but the one I am on covers all of the health care sectors including Child Care, Criminal Justice, Health and Social Care so you get a taste of all of the areas, not just one.

I go to College 3 half days a week. At the moment, on a Monday, we are doing Communication, on a Wednesday afternoon, we are doing Child Care and on a Thursday afternoon, we are doing Criminal Justice. It is all really interesting and I have learnt quite a lot from the course already.

I have an assignment coming up soon which looks to be quite hard work. My teacher has been preparing us for it now so it isn't too daunting though so that is good.

I had my Placement induction day last week and found out that my first Placement will be on the 23rd November and will be in a Care Home looking after old people etc. The placement lasts 10 days (2 school weeks) and I have to do 50 days of placements during the 2 years that I am on the Course ... a lot of hard work!

All of the other kids on the Course are really nice so that has made things easier. They all know about my RSD and don't judge me because of it ... I guess it's easier for them to understand as they are all wanting to go into the health care fields when they are older.

When I am not at College, I still attend the School centre that I used to attend. I really like it there and I don't have to walk round as it is spaced in one room so that has made things easier. My mum has enrolled me onto a GCSE Science course that I can do at Home however, I still have to go into School once a week to do it. I started last week and I was SO nervous as I hadn't seen the kids for 2 years or so. Most of them were OK thankfully but there was a few that made rude comments but I guess theres always going to be some that are like that. The School has arranged for a lady to come and sit with me during my Science lesson. She is really nice but sometimes, I just wish that she would leave me alone and let me get on with my work myself. When she is there, I sometimes feel as though it draws more attention to my illness which I don't really want ... I just want to try and be as 'normal' as I can!

My great uncle passed away a few weeks ago so that has been really upsetting. I was pretty close to him so it's hard to know that he's gone. I think it made it harder too as it reminded me of my grandad who passed away last November so brought all of those sad memories back. It was his funeral last Friday, I wanted to go but my great grandma was being awkward saying that I shouldn't go ... she's really old fashioned when it comes to things like that!!

My mum got a phone call from my PM Doctors Nurse a few weeks ago asking if we wanted to go to the House of Commons in London to raise awareness about schools not understand chronic illnesses. She knew that we had had real problems with schools not understanding so thought it would be good for us to go. We told her yes and we are going on the 27th October. Apparently all of the MPs are supposed to be there and maybe even Gordon Brown so hopefully it will be a good oppertunity and help schools become more supportive!

My RSD has been flaring up quite a bit lately - probably due to the extra school work and weather changes etc. I have been pretty ill recently too so that hasn't helped - i'm not sure if i've had the Swine Flu or what but it took everything out of me and I felt awful for a good few days and was unable to do anything. I am finding now that on a weekend, all I seem to do is collapse from exhaustion - it's sort of like my body goes into shut down mode!

I hope all of you are doing well - thanks for the continued support!

Alison

Thanks for the update, Ali.

I am glad you are enjoying school. That is just wonderful.

happy to hear from you
 

Hi Ali,
Your absence from the boards is a clue that you have been very busy and generally, it sounds as though your studies are going well, despite the challenges! The happiest part of your post are the fellow students in your program with whom you have a good rapport!!

My condolences on the passing of your great uncle..and the memories of your Granddad that once again arose..
I, too, am thinking of my sister, whom I lost 2 years ago this November..

Ali, it's wonderful that your pain Doctor's office thought of you and your Mum to speak before the House of Commons! What a grand opportunity for you to raise awareness about health issues for children and particularly RSD. Your pain Doctor couldn't have thought of better advocates than you and your Mum!!

In a previous post I had written about how worried I was to take an all-day Saturday class for 2 months because of my unpredictable pain levels and the exhaustion from the Monday through Friday work-week! In my post I spoke to your perseverence and commitment and it was you who inspired me to go forth with the classes!!
Ali, I am glad to hear all is going well and that you are feeling better from your bout with the flu!
In your busy schedule, I hope you find time to keep us updated..and to try and balance your busy schedule with lots of rest !
Hope4thebest :hug:

Wow, Ali, no wonder we haven't heard much from you in the past months. Glad you are enjoying your college classes and that the students are understanding of your condition.

I agree with hope4thebest, in that they couldn't have chosen better advocates than you and your Mum to represent RSD at the House of Commons! I do hope you get to meet the Prime Minister! :hug::hug::hug:

(((Ali)))
so good to read your update and that you are possibly going to advocate at the House of Commons on behalf of schoolkids with chronic illness!!:winner_first_h4h:
as mom to a son who faced enormous challenges because of this, I applaud you and your Mum

sorry to hear about your grand-uncle:hug:

but just so encouraged to see how you are moving forward and upward with your life and rising above the challenges that your illness brings :) You are a wonderful inspiration of what it means to become better, not bitter, when life throws a curve ball:hug:

Hi Ali! I'm still having a hard time believing that you're in college! I haven't gotten any older......so how come everyone else has?? :p

I'm glad you're enjoying school. It sounds like you stay pretty busy but that's a good thing. I'm so sorry to hear about your Uncle. When things like that happen they do tend to remind us of all the other losses we've had. Hopefully soon you can remember them with a smile instead of tears. It takes a while but it does happen. :hug:

Thanks for the update! We've been missing you! :)

Hi Ali,
 

Keep up the good work. You are an amazing person. You can do anything you want in life.

Glad to see you posting and that you are doing so many good things for yourself and others.

Ada

Hey,
you have been missed.
But SO good to hear all your news. Good for you girl.

I hope you enjoy aged care. It's very satisfying (and painful, all at the same time).

Take care.

Hi Alison,
It was good to hear from you. Sounds like you have a very full schedule. No wonder you collaspe on the weekends. My daughter went to collage also at the beginning year of her senior year of high school-age 16. And it was a 12 month school. But we took her out a couple times a year for vacation and she just had to practice on her court reporting machine.She finished when she was 20. She has been with the same firm for 10 years. She loves the freedom of being free lance and yet works as much as she wants.
I'm just getting over the flu-3 months long. My gp wanted to give me a flu shot while I still had the flu-I said I didn't think that would be good and he argued with me, so I just canceled my appointment. Are you getting flu shot or h1n1 shot? I have never had the flu shot in my life, and am nervous about it. My RSD Dr. wants me to have the flu shot and h1n1 shot- I have such a weak immune system and tendency for chest infection that last 3 months plus.
It was really good to hear from you. Take care, your friend, loretta and soft hugs to you and your Mom:grouphug:
I'm sorry about your great uncle. Death of a dear one always is difficult.

Dear Ali,

I don't think there's another teenager with whom I am so impressed! You are an achiever and always will be. Please make sure to pace yourself, keep up with your PT, and set aside some personal time just for yourself.

We love you and miss you. Remember that we care so keep us up to date on how you are progressing. And when you and your Mum get to the House of Lords to make your presentation - knock 'em dead!

XOXOX Sandy

Wow
 

:) 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. :grouphug:

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!:hug:

Loretta - Sorry to hear that you have had the flu. :hug: 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!:hug: 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 :hug:

HI ALISON - SOMEONE FROM THE UK!!!!!:Wave-Hello
 

:Wave-Hello::Wave-Hello::Wave-Hello: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.:hug:

Ali you are so special
 

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!:hug: 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!:hug: