Hey

Desi - Thankyou so much for your sweet words. Thanks everyone! you have been awesome.

I am having such a bad day today - I am so frustrated and fed up. I got dropped twice again today. I don't know what is happening to my body and I hate it. The "paralysis" is getting worse and my arms are dying more and more. It has got to a point where they are so weak I can barely even press the "on" button on my computer let alone lift my arms from under the duvet or if they fall off the armrests on my wheelchair. I don't know. I hate it.

I am supposed to be at a Ball at the moment - but instead I am stuck in stupid bed, in stupidly evily huge amounts of pain, and I can't do this sort of thing anymore. I'm flat in bed in tears - all my friends are out at the ball partying. I told them to go - they said they were happy to stay, but I have NO choice about living with this disease - they do - and I won't let it ruin my friendships. It's just so so so isolating. Especially as today has been so bad that I just want to be able to get my mates to make hot apple juice with lemon, honey and ginger and then curl up in bed and gossip about something that isn't pain or just sit outside and swap ideas or jokes or just anything that is a distraction from THIS.

I don't know how much longer I can handle this. I am 21. I am at uni. And I guess another thing is that I have just realised how much worse I have got functionally/ physically in the year I have been at university.

It's so so hard and I just hate this so much. But there is no cure but persistence and time and things will improve.

Thanks so much for letting me vent.

Love

Frogga xxxxxxxxx