needed a little rant and advice.
was supposed to be travelling back to london today from being at home with parents for REST for past 3.5 weeks, though in that time still managed to have 2 episodes of pneumonia - 2nd of which i am really struggling with now(hoping i dont need costa again but okay for now, been to costa resus few times and admitted overnight and few A+E visits *sigh* though judging by last few weeks prior to me coming to wales (coincidently starting vitamin D at same time due to SEVERE deficiency...) this is an improvement!!
STILL on 40mg pred for Lord knows how long now, i have lost count, been on pred long-term for alomost 2 years, and everytime i try to reduce i end up in costa or something goes wrong the aim of my present cons is to get me down to maintenance of 15mg - huh, yeah right?!
finally had my appt through for RBH yey! though not until sept 19th so gotta wait till then for the Gods of London to finally sort me out, just praying i can manage till then..
supposed to have my existing cons appt tomorrow but rearranged till next week along with xolair injections, they due to finish AFTER my appt with RBH so dont even know if they will continue to give them to me, and to TBH, i know they wont work, so rather someone else have them instead of me
i really dun like my present cons at all, and dread seeing him. feel as if he lectures me everytime i see him. he says i dont try hard enough to avoid my triggers and dun follow my management plan and just make my own up, not happy with my self-disch which i have promised not to do anymore :S and he has no idea what to do with me - how to treat me next. even asked me - what do u want me to do for u ? - apparently thats a BTS guidelines question all cons ask their patients? but i was deeply upset and offended and felt like hitting my head against a brick wall... he just sits there and grins in each appt > then he says he is confused as sometimes my lung function in clinic is shite, other times its perfect - isnt that what it's supposed to be for us brittle asthmatics - variability like our pf?
i have occ health on fri so really need to be back in london for that. been off work 6mths now and go down to SSP only from august 5th and certainly wont be able to manage living in london on that and dont wanna rely on benefits as they take forever to go thru and cant wait for that wen strugglin now
occ health need me to be having less major attacks and costa visits and be on 20mg or pred to go back to my existing ITU post.. so i dunno wot to do or where to go from here, i cant magically cure myself by fri ??
so gonna have to think of something and ask them PLEASE PLEASE place me somewhere else as i NEED to be back in work and off 'off sick' ASAP for financial reasons as well as my sanity and normality and stress levels... i am willing to go into any capacity until RBH can sort me out, which i hope they can, in september - ish time...
anyways, sorry for long post and rant. rant over...
hugs to all x x x