Sunday, 16 September 2012

I need a holiday.

We're off to Florida for half term. Very exciting. We booked the holiday in the Spring, paid up, and then had the momentary panic in case our passports had all expired. But they haven't. And for most of us, that, plus the travel insurance, would probably have been it. And here follows one of the less obvious reasons why being a disabled family is so exhausting.

I mentioned travel insurance. Did I mention the fact that the travel insurance for the three of us for the week is costing us approximately the same amount as one adult return plane ticket? Gulp, pay, and be thankful for DLA. But setting aside the more-than-a-thousand-pounds cost, it also took me over an hour on the phone to make sure all the pre-existing conditions were covered. Whereas had it been just me, I could have simply ticked the "do you wish to add travel insurance for your holiday at a cost of £17" box on the travel agent's website.

Actually, if it comes to that, I could simply have booked the entire holiday on the website, rather than having to phone the travel agent to ensure they recorded the fact that both girls are disabled and will need extra help on the plane, and that we will need an accessible hotel room. Which I may as well have done anyway, since I then had to contact the airline myself and warn them.

I'm glad I did; the airline has two different travel chairs which will make the girls' journeys much more comfortable than in the past. And they have a means (not the most dignified, but a lot better than nothing) by which we can change the girls mid-flight if necessary. And they will give us extra baggage allowance to carry the medical supplies. Etcetera.

The airline sent out some forms for me to fill in; I filed them somewhere safe, knowing that I would need to sort them nearer to our travel time. No point whatsoever if filling out detailed medical needs forms when medical needs change so often.

Now, this airlines is definitely better than the others we've used. They do have the travel chairs. They have the toiletting needs more or less sorted. They are willing to provide oxygen for Miss Mog, just in case she needs it, for no charge (other airlines charge quite a lot for that). they seem a lot more clued up than other alines we've used, and I'm thankful for that.

But with this organisation comes paperwork. Much paperwork. And with the girls going back to school, I knew the time was finally right to sit down and sort through this paperwork. Which, naturally, I couldn't find. Time to contact the airline again. Oh, and to mention the fact we would need to bring needles onto the plane for one of our more complicated and newer medications.

No problem, just more forms to fill in.

So I sat down and started to fill out forms. Forms which required the dimensions of the girls' wheelchairs. Fiddly, but if it means they get transported more safely, great. Forms asking how to dismantle the chairs and reassemble them, how to take the power chair out of gear and disable the motor for safe transport, and where to hold it safely when moving it. Great. Two copies, both to be carried with us. Best not lose those then.

Next form. tLP's own dimensions, to ensure the travel chair would be suitable for her. It will be, phew.

Next form. Medical forms, page one to be filled out by myself, page two to be filled out by our long-suffering GP. It is at this point the frustrations begin to hit. I phone the surgery, they tell me to drop the forms off and let the GP fill them out. I ask for an appointment. They say the GP can fill them out and call me if there are any queries. I point out the form requires blood pressure readings, something which it is not possible to acquire over the phone, they repeat, word for word but slightly more slowly, the fact that I must drop them off and the GP will call me. This conversation repeats until I realise that there will be no deviation from the script, and I hang up, wondering what amazing new blood pressure monitoring device the surgery has gained, which can take a reading over the phone. I drop the forms off. Oddly enough, the GP phones me a couple of hours later, requesting the girls' blood pressures...

And here's the thing. These forms have now taken me a good three hours, including time spent getting the printer to work and faffing on the phone. Asking the GP to confirm that the girls will be able to sit upright for take off and landing (reasonable question), whether they will need ambulances on standby (again, I suppose, reasonable question), hoping the GP agrees that their prognosis during the flights is good (she's put Stable; I guess that's good enough), asking for a set of vital signs (not sure why needed, but, BP aside, I may now take another round on board for comparison purposes. 8 hours is a long time). And then asking the GP if the girls' conditions are likely to cause distress to other passengers. And I take issue with this. Not issue enough to stop us from flying, but why and how is this relevant? Who decides what might cause distress? It would cause me great distress to be seated next to someone who got themselves obnoxiously drunk having first eaten vast quantities of flatulence-inducing foods. But they don't need a GP to warn the plane this might be a problem. I'd find it reasonably distressing to be sitting in front of a travel sick toddler, but again, no specific permission needed for them to fly. I know I find it infuriating to be sitting in front of a child with kicky legs, especially when combined with instant reclinomatic man in front of me, giving me the choice of counting reclinoman's dandruff flakes or having grubby grabby hands around my ears on a repeated basis. And being the loving kindly caring Christian woman that I am, should I find myself in this position again, I shall simply grit my teeth and mutter, and apparently still be bitter four and a half years later. I'm good that way.

Still, forms filled in and returned. Make, model and serial number of suction pump tracked down and emailed, together with make and model of ventilator battery, further information on wheelchair batteries, and supplementary letter requesting permission for large volumes of medication to be carried on board received and left in handbag to be covered in fluff filed safely. Oxygen on flight form filled out.

Wheelchair accessible shuttle to hotel booked (though not for return journey - must remember to sort that too). Hotel contacted to talk about medical equipment hire; hotel have not been informed that the girls are wheelchair users, and now have no fully accessible rooms left. Thanks, travel agent. Various Floridian oxygen supply firms contacted, one has got back to me. But not yet shared information as to what format the presciption request must take, although they have informed me I must have one. Three phone calls to Orlando so far. More hours spent searching for alternative suppliers, including one which might supply both oxygen and a toilet/shower chair at the same time; is this really such an outlandish request?

Attempts made to sort accessible transport to Disney. More requests for more information about the suction pump. Hotel in Gatwick booked; must organise transport to airport from hotel. Additional luggage allowance sorted again. High visibility luggage fixed. Feeling relatively complacent - how many people will be travelling with pink and purple flowery bags, as chosen by a seven year old? Conversation with Mum, recently returned from Dubrovnik. Apparently many travellers have identical cases. Less complacence, add "high visibility luggage labels" to list of things required.

Conversation with respiratory nurse. Ancient CPAP most likely not compatible with US voltage. New CPAP (which was requested a long time ago; this has been a loan unit for over 2 years now, and funding has still not been agreed for her own device) would have worked just fine. Nebuliser we know won't work over the pond; nurse comes up with a solution. Oh, we have a CPAP solution too, but we wouldn't have needed to find a solution had we got the right equipment in the first place. 

By now, two full school days plus a couple of evenings spent trying to get a grip on holiday stuff. Still to do - sort equipment supplier, and decide whether we can manage without a toilet for the week, or whether we should bring the collapsible one with us. If we're going for the hiring option, should we look at a bed and hoist at the same time, or is this going to complicate matters and fill the hotel room for minimal gain? Can we squeeze our portable changing bench (massage table) into our luggage allowance, and is it worth it? Answer: yes, if at all possible; makes a huge difference.

And then, because life is never all about one thing at any one point in time, add the need for a new boiler. Which is now scheduled to be installed later this week. Which means moving this bookcase
as well as losing the cupboard where I store all my plates and cups, and just as a fun little side project, ensuring free access to every single radiator in the house. Which will mean moving all the beds. The largest of which has not been moved since the new flooring went down, five years ago. Marvellous.

So I guess what I'm trying to say, in a very long winded and mostly self-pitying way (congratulations if you've read this far), is, I really need a holiday. Forty sleeps and counting.


Claire said...

I'm exhausted just reading this. We haven't ventured abroad yet with our wee wonky one, I've be worrying how we'll fit all his extra stuff in the car for the hours drive to centre parcs, have even bought vacuum pack bags to minimise space taken up by clothes. You defiantly deserve a holiday just for the effort going into booking it. Hope all goes smoothly and lots of fun time are had by all.

Linda said...

You are amazing! I'm sure you will all have a great time when you get there!

But I do worry that you never, ever have any time to yourself to relax. Hopefully with Helen House and lovely Granny you might be able to have a weekend off to recover from your holiday?

Tia said...

Center Parcs really need to start putting washing machines into their villas... Have a good time. I love the fact that once you've got there, you don't have to worry about driving anywhere else. Bliss.

Linda, I have a stay booked at HH after our holiday which should hopefully be a proper rest stay - am busy saying no to things which might otherwise fill the days. 4 whole nights sleep is sounding very exciting!

evieg1983 said...

Well I have just the one complicated child to think of and a few more months to think about it but the forms need filling and the big question at the top of the first one saying has the person had surgery in the last 5 months is not one I can answer yet so I've put them away again! Sure it will all be worth it when you get there.....that's what I keep telling myself anyway!

Danni said...

Wow! I'm sure the holiday will be worth it (and post-holiday respite even more so).

I hope it all goes as smoothly as possible for you.

Anonymous said...

Like Claire, I was worn out just reading about all you have had (and still have) to do!

Hope all goes smoothly, the weather cooperates, and the three of you have a WONDERFUL time!


Yvonne said...

What a faff, no wonder you need a holiday after all that. People would probably pay you to walk them through the process!


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