After my somewhat self-pitiful mini-rant last week I seem to have slightly dropped the blogging ball and not had a proper update – the longest I’ve gone without an update since I started this blog I think.
I blame many things – anything really that absolves me from accusations of being too damn lazy/forgetful to write something interesting on here – and deny all such mutterings from the kids in the back.
Still, things have picked up mightily since last Thursday – I knew it would only be a blip, and it was, albeit a two-dayer, but a blip none the less. I struggled for a couple of days to shake of the negative thoughts and not-so-nice images in my head, but I’ve got a pretty good daemon fighter in my head after all these years, so I get back on top of things pretty quickly.
This weekend was a weird one, because I had lots to do but couldn’t escape the fact that during the week I’d actually been far too busy and needed to take a bit of time to myself to make sure that I stopped myself from sliding down hill.
I headed to Oxford on Friday to see my physio and we made plans with my CF nurse to start a course of IV’s at the end of this week. They wanted me to come in, onto the ward, for the first week of the course, but I managed to negotiate a stay of execution until the week after to ensure that I didn’t have to miss another week of work. (I’ll now be in hospital for half-term week, so not nearly as bad as going in next week).
It also means that I can still attend the meeting I’ve been invited to at the Department of Health next Tuesday, the subject of which is sadly under wraps at the moment, but I’m sure I’ll fill you in on at a later date.
Today, however, I was coincidentally down at the DoH as well, meeting with the team who deal with oxygen provision to discuss the problems that I and other PWCF have been having with the home oxygen service, mostly with relation to Allied Respiratory.
It had originally been scheduled as a meeting between all three sides, but in the end the decision was taken by the DoH to have a separate meeting with Allied, which the CF Trust will also do, to air the concerns directly.
The purpose of today’s meeting was to express as clearly as we could the importance of so-called abulatory oxygen to PWCF and their needs for portable O2.
It was actually a really positive meeting, with the two representatives of the DoH really keen to take everything on board and correct things. It’s fair to say that things are a good dal better with Allied than they were even 3 months ago when I first started using them, but it’s important for the issues that did come up to be properly looked at to ensure nothing like that happens again.
I’m confident following the meeting that good things will come from it, including a commitment to looking at lighter, more portable forms of oxygen to make getting out and about easier for people like me who find the cylinders a weight.
I also hope that the feedback with regards to customer service is picked up on and driven home to the company, because their staff training is simply appalling.
The meeting did exhaust me, though, so it’s an early night and restful day tomorrow on the cards.