Thankyou Ali and CZ

Sorry I haven't responded before but I've been in hospital.. I keep going into status dystonicus and James (boyfriend) ended up having to call an ambulance. Whilst I was in hospital they had to put cannulas into both my arms which led to a severe dystonic reaction so I have lost coplete use of my arms as they are now wrapped around my chest with the hands and arms completly locked. I had to be intubated as I wasn't breathing and this has really flared up the RSD inside my mouth, throat and eosophogus and they just burn and stab all the time. As my jaw has locked I can't eat. I can't tolerate an NG tube and they daren't place a central line after what happened with my arms. I was on IV meds but all my veins collapsed and then I went onto IM meds but the pain was just too bad so I'm on liquid meds. I'm having severe breathing problems at the moment which isn't helping things and I'm having far more problems with my speech as I'm so breathless I can barely talk for a sentence. I keep going into status dystonicus.

Luckily my mum got me discharged as she was really worried about me getting worse in hospital as all they were doing was medicating me and otherwise I was just staring at the hospital ceiling. I was lucky that my friends came into visit every visiting time. However, because of the meds I can't remember seeing most of them! (very embarrassing!). It sucks so much though because I am now 100% dependent for everything from changing position to moving my wheelchair and can't even eat pureed food without aspirating.

I'm so fed up with all this pain and disability. I don't know how I'm going to continue on the course next semester - I'm resting as much as possible at the moment so that I will be able to return as I'm on placement and running a really important project that my dissertation will be based upon.

It's so tough though. I'm now on 150mg morphine, 100-150mg ketamine, 400mg dihydrocodeine, 800mg tramadol, 4mg paracetemol, 1600mg ibuprofen, 90mg baclofen, 120mg diazipam and 20mg domperidone and it doesn't seem to be making the slightest bit of difference apart from making me feel ill as!. If I take everything together I get 2 hours sleep and then the pain is back and the breathing problems are back etc.

My blessing in this is James - he is coming down for Christmas and was there every moment he could in the hospital with me - stroking my head, holding me down whilst I Was fitting, explaining my pain to the nurses and in the end taking care of me himself to try and keep me as pain free as possible.

I just don't know what to do.

Ali - I'm so sorry that your pain is continuing but I'm glad you're back at school 12 hours a week - it is touch getting back into school isn't it? I remember from when I was getting back into education. Hows the walking?

CZ - thanks for the love - tons of love and pain free hugs back to you..

Well.. that's it for now... I'll probaly repost this on a new thread in case anyone has any advise...

Tons of love and pain free hugs to you all. Happy Christmas and a pain free new year if I can't get back on the computer before then...

Rosie xxxxxxxxxx