Hey Frogga, hope you are feeling better now. I sure enjoyed talking to you in chat this morning (well, this afternoon for you). We'll have to do that more often

Hope all goes well with your exams, keep us informed... I, at least, get to live vicariously through you, ya know. I haven't had much to do with the outside world for quite a while now, so I really enjoy your "college days" stories.

Hey, here's something for ya. Tell Hunky Dunky that one of your friends in the forums wants to give him a kiss for being such a good friend... but I'm in America, so you'll have to kiss him for me.

You are in my prayers! I hope you have a better day!!!

Frogga -I hope a much better time for you today and forever, you are one amazing young lady!

Hey Mate,

You are so brilliant. I believe you will not go up the mountain in your examines you will go right thru the mountain. Love, Roz xxx

Hi Frogga.
I Hope That You Feel Better Soon. We All Know How Those Bad Days Are. Hang In There.

Sue K.

Thanks everyone so much - you are all awesome! It is great being able to share this with people who understand - I mean, it is really hard to try and explain it to my friends - they have been wonderful but at the same time they really don't understand what it's like!!!

Well. I'm pretty scared, they now think it's an RSD deterioation again which is not good - I'm not sure whether I can handle more of this - especially long term!!! I can't feel anything from my chest down (apart from pain) and have no independent movement from my chest down. It's really difficult to cope with because it feels like my life has been limited down even further. I can't even stay in the bathroom on my own and it's stupid - but it feels such a huge deal. And losing all the other stuff, it was only small stuff like being able to change my position on my own in my wheelchair, or being able to reach forward for something or sideways for something instead of being tied flat into the wheelchair.

It does show me how grateful I should be to my friends - they have all pitched in and are learning the new ways of log rolling, head tying, hoist using and harness adjustments. (I don't have a harness on my wheelchair at the moment, but every time I hit a bump - even in tilt and recline - I go flying out of my wheelchair and my head does the whole exorcist thing and my body bounces around and out of it - so my carer and some of the boys have improvised one which is helping. Also found a good use for my bandannas for tying my head to the head rest! ).

I got dropped twice more we wanted to see if my legs were doing better, so Ben picked me up and I went straight on the floor. So more bruises. Just this time he dropped me under the bed and under my wheelchair. Ooops. Ended up with most of the boys in my bedroom trying to log roll me without breaking my neck - but I suppose it did get my bedroom tidied for me (hahaha! it had all my work on the floor and because they had to get the hoist in they had to pick it up).

The exam is slightly stressful. I am not quite sure what is going to happen because I'm not sure that I will be able to sit up for the 2 hours it is going to take. I just keep comforting myself by thinking that even if I fail this completly I still will have a 2:1. Just, I would like to do well in it just to prove I can.

I'm just so frustrated - I have fought so hard this year to be normal - and to finish (I have an exam tomorrow and then term is over!) and suddenly it all goes totally pear shaped.

Thankyou all so much for your support - it means so much to me to know I am not the only person going through this. I guess i'm getting resigned to accepting whatever the RSD throws at me and trying to fight it, live with it and get my quality of life back.

However, a major achievment today was getting in the car! It took 3 rugby guys to lift me in and out but we managed it!!!! WOOHOO!! (just means when I go home at the weekend I will have to have them all come home with me or something!). I nearlly knocked myself out on the handbrake when one of them let go of me. However, it's a 4 1/2 hour drive home and I'm slightly concerned I will go insane doing that journey! oh well. It will get sorted!!

Thanks so much guys for all your love and support.

More properly after the exam.

Love

Frogga xxxxxxxxxxxxxxxxxxxxxxxxxx

frogga

I am not very good at saying things...but I want to let you know that you are such an inspiration. You have faced so many challenges- it really put things into perspective for me.

wishing there was a way I could help you out !! Sending the best of thoughts and prayers your way.....



Jules

hi frogga - how did end of term go? after i finish some huge struggle, like your exams sound like they will be, i generally fall into a massive collapse on the floor... but you've already had your collapses < feeble humor>!
my heart aches for you but your fierce fire shines bright for me
please let us all know how you are doing, when you can.
xoxoxoxoxoxoxoxo

You're an inspiration...

...now get better.

Hey everyone,

thanks so much for all your support, love etc it mkes this so much easier to deal with knowing that you are not alone!

Well - exams. That was fine - I finished a 2 1/2 hour exam in about 45 minutes (hey, 60 multiple choice questions!?! my A levels were harder) and I think I've done fine on them - the brain fog made it slightly hard but I fought through it.

RSD - I am still floppy from the chest/ shoulders down and still have the diminished sensation levels and the lack of movement. However, my joints are now being really stupid - they have tightned in a different way to the dystonia - with my dystonia once you learn how to undo a limb it can be stretched out a bit whereas with this it's just gone solid. How can I be solid AND floppy?! My legs are too weak to even allow me to be lifted but yet my carer can't bend or straighten them. This is all making me really upset as well because it is starting to affect my arms - yes, my RSD is already in my arms - but this is different - this is the floppy unable to move or feel things thing. Both last night and the night before I have had to try and deal with my arms just dying and stopping working. I had my arms checked out by one of my friends who is a first aider and training as a paramedic and apparently I had lost all reflex activity in my arms. It's horrific to sit there for hours willing them to work and knowing you can only move your eyes and that even if you could move that teeny bit you would be on the floor anyway.

I don't know what to do - I don't think I will be able to cope if I lose 100% in my arms - at the moment all I can really do with my arms is use my electric wheelchair, drive and hit things but losing that would be devestating to me.

I guess I just have to hope it is the ketamine and muscle reactions but it's looking more and more like the RSD deterioations I have had before. Damnit. I'm feeling abit sorry for myself at the moment because most of my friends are travelling around europe this summer - and though I was considering it it will now have to be written off and I am missing the end of year ball because I am not well enough to go and be able to sit in the car on the way home on sunday/ monday (my mates are trying to force me to go to the ball... but sometimes (very occasionally) my RSD sensible part of my brain insists on over riding everyone else with "if you really p*** the RSD off then what is going to happen?".

I guess this is my biggest fear. What's next? .....

Sorry if this is yet another frustrated email - I do try not to make them too bad - but...

all my love and thanks all!!

Frogga xxxxxxxxxxxxxxxxxxxxx