Originally Posted by frogga

Thankyou, all of you! I wish I could reply to each of you individually but at the moment that's just not possible but thankyou from all my heart.

It's pretty tough at the moment.. I've started having much more frequent chest spasms (at least one a day) which have been lasting several hours making it almost impossible to breathe.. apparently my lips go blue and my skin goes grey whilst they're happening.. I can't talk and all I can concentrate on is trying to breathe.. my mother (who hates hospitals even more than I do! even though she's a nurse) actually considered calling an ambulance which has got to be a first.. (considering she just surrounds me with pillows/ soft stuff when I fit and then apparently leaves the room).

James is staying with me for the Christmas holidays (yay!) which is lovely and he's been brilliant. I still cannot believe what a blessing he is - for those of you who don't know he's my boyfriend. He's there for me 100% and over the last couple of weeks has been there to wipe the tears away, try and make me laugh and just generally being a darling.

The pain is just unbelievable. Because my arms are stuck across my chest my right knuckles/ finger joints are being forced into the crook of my left elbow with my right wrist twisted inwards whilst my left arm locks under my right and into my right elbow crook. The spasms are so strong that they are bruising my chest, knuckles/ hands and my arms. Also my shoulders have locked which is just SO uncomfortable! I can't sleep, I can't think or talk straight. My eyes are burning and the double vision is just so irritating when you're trying to work (yes, I have work due in over the holidays). It just feels like I've got knives being stabbed into me, like my bones are set on fire, like my skin is on fire and going to explode... I'm just so fed up of burning and stabbing and to add it all I've got the RSD headache which keeps coming and going and is just a nightmare..

I sometimes wish I lived in the US where there is at least some effort to treat RSD and dystonia. Other than the DBS the only things I'm offered is botox, meds and that's about it.. they'd rather pay for full time live in carers, electric wheelchairs, hoists, wheelchair adapted vans and all of that than something like the ketamine coma which has the possibility of getting me well again.. it just seems so unfair! my PCP (GP) will no longer try any meds as they're too scared to try anything, (oh, RSD Angel, I used to be on fentanyl but even the highest dose made very limited difference to me so I had to stop taking it and it's so expensive the UK dr's won't pay for it) I am just HOPING and PRAYING that my new pain dr is going to help me... it's my hope and it's keeping me going.

I'm seriously considering having a year out of uni and having the DBS... this may sound really melodramatic but I just worry about how much worse it's possible for me to get. I can't eat.. I spend several hours a day fitting or struggling to breathe, I can't move and I'm always in agony.. I just feel I need to do something..

I guess it's just Christmas/ New Year and it's just got to me that I couldn't even open my Christmas presents myself...

Thankyou, all of you, and sorry for complaining so much!!!

Much love and pain free hugs to you all..

Rosie xxxxxxxx