Hi,

I know I've been quiet lately. Some of you may remember that I had a pretty major fit 6/7 weeks ago? (from the RSD/ Dystonia). Well, it turns out that my blood pressure is now uncontrolled (I already had POTS - postural orthostatic hypotension, tachycardia etc) but it's all come together to make me spend several times a day passing out - whether it's for seconds or for minutes. My pulse is well over 150bpm most of the time and my blood sugar appears to be uncontrolled. So this all goes well with the increased frequency of Dystonic fitting I'm getting now, increased pain, increased migraines, auroras, grey wavy vision, distorted vision, dizziness, major nausea, colour vision problems etc..... It appears to be worst in the afternoons so I spend every afternoon flat in bed waiting for it to pass where sitting up at even 20 degrees will have me passed out. So life is mad! especially with trying to do a full time degree course at the same time! Concentration is not really happening at the moment so I'm, well, struggling, with the workload - it's taken me 40 hours to do a lab report!! and I can't be in most of my lectures at the moment due to the great embarrasment every time I pass out - some of my friends have worked out when it's going to happen now but they can tell by looking at me and seeing that my skin's gone grey, my lips have gone blue and my eyes have apparently gone yellow (attractive! ). I passed out in a lecture the other day and it was horrible! The lecturer didn't know whether to notice or whether to ignore it! very embarrasing... I think I've spent about 19 hours a day on average in bed for the last month and I'm SO fed up with it - all my friends are going out and I bloody pass out if we go out and have fun somewhere. Grrrrr! This is not fair! even with my wheelchair tilted fully back I'm still not flat enough. GRRRRR!!! and as the stupid english weather is really dumb my pain is insane. Apparently it looks like the start of ANS failure (or just a very bad flare affecting more than normal).

However a friend of mine had emergency DBS after going into status dystonica and is now cured so... I'm going to see her neurosurgeon but trying not to get excited - I got evaluated for it in the summer and they decided it would be too risky to do it in my case and they won't do it until I've had the pump implant anyway. But, it's hopeful...

Any advice? Any advice on improving the work/ illness/ life balance? I HAVE to be back in lectures and doing stuff soon. 19 hours a day in bed is sending me insane, as is not being able to move and mega pain!!

Love ya

Frogga xxxxxxx