Irritable, snappish, fretting, & trip planning: Linda and I act like humans

I was feeling better today but, now, upon waking from getting to sleep late in the afternoon, I am bone tired. Woke up in a bad mood made immediately worse by Linda telling me that Person X was taking me to my heart Holter appointment which I found a shock becuase Linda had told me Monday that considering my not very stable health that I was NOT to go to the appointment on Friday where they take the Holter off as that is something Linda could do and drop off. And I guess my second shock was that Linda and X had forgotten that I was actually a sentient being and not a game of ‘pass the parcel’. So I told her that I was going myself and would find my own way. This is not the best way to start a discussion (on either part).

This brought to head the issues we have been finding with Japan, that everything is taking enormous effort; that the “official Japanese Travel Agency” IACE often tells us completely contradictory information or will simply avoid answering the question and then come out with a totally different answer weeks later. Which leaves us, for example after we were told two days ago that EVERY single hotel room in Kyoto for April 8th is sold out. We find, of the tens of thousands of hotel rooms that to be a VERY unlikely scenario. Also, one of my dreams in going to Japan is to go to the Ghibli Museum which only has 300 tickets a day. We are only in Tokyo for two days and IACE told us that “They will get us a ticket.” Then a week later, when we emailed, “Okay, where are the reservations for the Ghibli Museum tickets?” We are told, “The reservations for the tickets can only be reserved on March 10th.” The Ghibli website says they can be reserved three months in advance. We call another agency which says, yes, no problem getting the tickets today which will cost $9 each, but there is a $25 “processing fee” plus GST here in Canada. We email IACE to find out WHY they need to wait until March 10th. There is no reply. This is an example of ONE thing for ONE day and a small amount of the effort it is taking to get anything resolved.

We have no wheelchair, two people said they “were pretty sure they could find a wheelchair” and would get back to us by the middle of this week. We have not heard from either of them, nor can we get them on the phone. The time left to rent and ship a wheelchair to our location to be fitted with the oxygen rack and recalibrate the axle, footplate and other details is quickly running out. We ordered a backpack for the wheelchair from Ti-lite about two weeks ago. Ti-lite is the company in Washington State that lost my wheelchair in Oregon for two months (I live North of Washington State, Oregon is SOUTH). Ti-lite has yet to ship the pack back, nor will they reply to emails on WHY it takes them weeks to ship a backpack.

The maps for Kyoto and Tokyo which we ordered “in stock” from Amazon on March 1st were listed, “To be shipped March 10th” (????) Why does it take Amazon nine days to find two maps? This is a small indication of what we do, well, EVERY single night when we are able, which is why, though I still have at least one appointment a day, and why I felt better this morning, I do not feel physically good now and I expect I won’t for several days to come. I had hoped that tonight after 6 straight nights of NOT having any time, I could start doing the word document for listing the manga on ebay to raise some money as I need to list them, collect payment and then SHIP them BEFORE we leave for Japan. That window of time is closing very, very quickly. It looks like I will be working on other things, either health or Japan related until midnight for another night.

I very much want to go to Japan and have been working toward that since January. But right now we are still missing: A wheelchair small enough to get in doors, etc; oxygen; doctor’s notes for all my medication (he is going on vacation in four days….he told us yesterday); a viable cooling system for me to stay conscious; hotel rooms for 5-7 nights; travel insurance for Linda (me? well they would cover a non preexisting condition, but the only one we can think of is falling off a cliff or being run over by a vehicle); a backpack for me to carry my medication and maybe some clothes for my chair; any way to carry the oxygen once we figure out how to get it; the prescriptions we need to fill for the medications I will need over there; all the maps and guidebooks which are not actually “in the post” but are awaiting being “in the post” (and you thought ordering by internet was quick); the actual arrival of ANY cooling devices or packs which we have already ordered online and the hotel we are to stay in Seattle the night before and the day of our return.

I am sure I am missing a few little things but let’s say we are stressing and having something between burnout and a panic attack simultaneously as when Linda turned to me yesterday and asked, “Do you really need somewhere to sleep on the afternoon of April 12th?” Hmmmm…..let’s see: I have needed to sleep every afternoon or I get sick for days afterward for the last 415 days. So I am betting the answer will be yes. Why did she ask this obvious question? I guess the same reason that we have been telling hotel we will drag though doors, we will “somehow” get up “more than 20 steps” to this or that site. Not 2 steps: more than 20. Actually, for me, getting DOWN is more interesting. We also have confirmed a total of one train station we intend to use in Japan, only to be told that, NO, that station is NOT wheelchair accessible.

So yeah, health be damned, I am burned out. So much for JR telling me in October that “with advance notification” they would ensure I could get in and out of every station. Wow.

It is now 11:42 and we worked for three plus hours to find that YES, every single room in ALL of Kyoto is booked over a month in advance, even the $290 a room hotel that has over 1000 rooms. But as it happened, that is just a layover town to our going to Kanazawa, so we just have to leave Tokyo a little earlier and go up the line to the next available hotel….which is 90 minutes up the line at the town of Fukui which is famous for…..having a nuclear power plant. But the price is right and now, excepting one night we have reservation for ALL our nights (plus it means we are only 50 minutes out of Kanazawa and so can see the Ninja headquarters and the original Geisha House and the Garden which is one of the “great three” in Japan all in one day and spend the next day SHOPPING….for Kimono’s – Shhh! Don’t tell Linda).

And somehow we are still speaking to each other. But no, we didn’t have dinner. So reservations first and recovery later?

Just keep saying: “I will not die on this trip, I will still have a relationship with Linda, I will not die PLANNING this trip, I WILL still have a relationship with Linda.”

It is my new mantra (until the planning is done!).