Europe – July 2017

T-1 – pre-departure

Wednesday 26th July

‘Twas the night before the holiday and all through the house, not a creature was stirring…well, Joey was on his iPad, Jennifer was still glued to Youtube and Sandy was busy squeezing more things into the suitcases. For my part, I’m starting to feel the tinges of apprehension now kick in. There are a lot of balls in the air for me right now – lots of things to contemplate. I’m really starting to feel the need for a relaxing holiday. With the agenda we have in place at the moment, however, I’m not sure how relaxing this one will be. I live in hope.

I’ve been surrounded by medical issues recently. My Mother is still in hospital. I called her yesterday and she doesn’t sound well at all. This is weighing heavily on my mind. A very good friend of ours had a massive stroke a couple of weeks ago. Sadly, he passed away this weekend and that has had a big impact on us all. I’ve been struggling relentlessly to get over a nasty cold for the past two or three weeks. Joey has been fighting an ear infection in both ears. He just completed a course of anti-biotics but was still complaining about one ear hurting. I asked him to tell me on a scale of 1-10 how much pain he was in. He said 10. OK, so Joey has never been that reliable with recognising the various signals his body sends him and he tends to operate in extremes at the best of times but I tried my best to tell him that this was serious and that I needed him to think about this some more and to give me a realistic response. He thought intently for a moment before giving me a revised number of 8.7. Welcome to our everyday life living with a child on the autism spectrum. Anyway, I took him back to the doctor last night and one ear is indeed still a bit pink (ironically not the one he was actually complaining about – that one is totally clear), so he has been prescribed another course of anti-biotics – not ideal since we fly out tomorrow afternoon.

I had a massive argument this week with the sleep study clinic that I went to for the overnight sleep study a couple of months ago. For reasons best known to themselves, they didn’t send all the results through to my doctor. There were some charts and graphs missing. The sleep specialist I was referred to alerted me to this. Now that I’m using a CPAP machine nightly, I downloaded some software recently that produces the same sort of charts and graphs that I expect are in the sleep study records and I wanted to compare the before and after stats just to see how effective the CPAP therapy has been. I called and asked for the missing details and, bizarrely, was refused. What? Those are my own medical records so what basis do they have for refusing to release them to me? It turns out they have a policy of only releasing medical details to your doctor. It was only after some heated discussions, escalations to higher ups and, finally, me pointing out that they are in breach of the Health Records Act 2001 by refusing to release the records that they eventually capitulated. Annoyingly, when they finally sent me the e-mail with the details, they forgot to attach the actual records and I’m now waiting for them to respond again. Seriously, do I really need this kind of stress in my life at the moment?

Another frustration I’ve had this week has been with the airline. Since I’m on the CPAP therapy, the general advice is that I should use it everyday – even on the plane. All the advice and guidance I’ve seen to date regarding the use of CPAP machines has been that it’s not an issue. The airlines and airport staff see these things all the time and don’t bat an eyelid. As medical equipment, everyone seems to think it’s OK to take as carry on and even that it doesn’t count towards your carry-on allowance. The aircraft we’re flying on have AC sockets in the arm rests of the chairs. This is ideal, since it means we can take our iPad chargers, for example, and I can use my CPAP machine during my sleep cycle. As I was unable to find any information anywhere on the airline’s website about the power rating of the AC sockets, I thought I’d call them and ask directly. It seems I must be the first person ever to have asked this as they were not prepared for the question. Unbelievably, they referred me to In fact I’d already been there but there are no power rating details there. It only states 110v but not the wattage or amperage rating. How incredible is it the airline staff don’t know basic information about their own aircraft and send you to a third party website instead? Anyway, during the conversation about why I wanted this information, I told them about me using my CPAP machine. They then pointed out that I needed to submit a medical clearance form first. I downloaded the form but it was really all about the need for medical assistance whilst on the plane, hospital assistance on the ground and other more serious medical needs. There were clauses in there about me taking responsibility for the cost of the doctors needed to assess me on the plane, etc. The whole thing seemed ridiculously over the top and really quite toxic. To make matters worse, it had to be all sorted out 5 business days before departure. Since we fly tomorrow, that boat has sailed (or that plane has flown, perhaps). With the whole thing seeming like it’s just far more trouble than it’s worth, I’m just going to tell them I’m not going to use it but will just keep it as carry-on instead. I’ll assess the situation when I’m on the plane and ready to go to sleep. Maybe the staff on board won’t care either way. We’ll see. I thought I’d see if there was a battery pack for my machine, to avoid any complications with using the on-board AC but they are ridiculously expensive and are only good for a single sleep cycle. When I spoke to the CPAP technician about the battery option, I got a bit of a fright when he told me there was actually a chance that my machine would be confiscated from me at the gate. What? This is completely contrary to all the advice previously given – including my usual CPAP technician – so I’m not entirely sure I should trust it. I can’t for the life of me understand why a piece of medical equipment should be confiscated. Once again, do I really need this kind of stress right now?

We have a couple of good friends that are going to keep an eye on the house and feed the pets whilst we’re away. I’ve drawn up some instructions, such as where to find the pet food, how frequently they need feeding, etc., which we’ll leave behind tomorrow morning. I’ve also asked one of them to pick us up some supermarket provisions so that we have some fresh bread, milk, etc. in the house upon our return.

And so now begins the calm before the storm. Tomorrow, we’ll set off with whatever we managed to cram into the suitcases and backpacks and just hope it will be enough to sustain us for the three weeks. I will write some more on the plane but the next update won’t show up until we’re on the other side and once again tethered to an internet connection. So long, Australia. See you on the flip side.