Friday 26 April 2013

Week One....

I started the continuous trial of subcutaneous terbutaline this week. I think this week has been the placebo, I really hope this week has been the placebo. I've experienced absolutely nothing, not even the placebo effect! In fact, as the week has gone on, my lungs have slowly, gradually gotten worse. I've got daily appointments with my respiratory nurse whilst on the trial, she commented on this decline and today wanted me to be admitted as my oxygen saturations were only 90%. I talked my way out of it, I think the fact that I was able to talk in full sentences was what swayed it, and I promised to get to hospital if I needed to over the weekend. 
I'm really hoping that I can keep out of hospital, I desperately want to finish the trial and the trial will have to stop if I get admitted. It's taken so long to set up that I just want it over and done with now!
So next week is week two of the trial. I'm holding out that next week is going to be the terbutaline, and that it makes a difference to my asthma. If not.... well I'm trying to not think about that.......

I had an incredibly frustrating meeting at work today. To the people who matter (Human Resources, Occupational Health, Lead Nurses), I am a delicate little flower who can't do anything, and I mean anything which is in the slightest bit physically demanding. This opinion is not shared by myself nor my respiratory team. Obviously I accept there are limitations caused by my condition, and yes, when I'm poorly I'm severely limited. But I don't spend my life poorly. But then, I understand it's hard to know what to do with me when sometimes I'm really well - to the point where you wouldn't know there was anything wrong with me, and sometimes I'm really unwell - to the point of being unable to move and at worst, respiratory arrest. Then of course, the majority of time I spend at varying levels in between those two extremes.
Anyway, it was agreed that I could return to work next week, back to my old ward in a non clinical role. I pointed out I'm on the subcut trial and have a syringe driver to carry around, and have daily appointments with the respiratory nurse. They said that was fine. I should have said I don't actually feel well enough to work at the moment, but I didn't feel able to. I've been pushing to go back to work so I can't hardly say I can't as soon as they sort something out for me. I went to see my respiratory nurse and she advised that going back to work, mid way through the trial, when I'm already not feeling well, was not going to be a good idea. So I'm having another week off sick, then go back to work (in a role I really don't want to do) the week after. 

*sigh* sometimes it seems that life is back on track, but it never is.

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