Saturday, 26 July 2014

When September Comes

Well after yesterday's little problem with my delivery, sigh, I had a call and a delivery was scheduled for sometime after four yesterday afternoon. This suited us fine as it meant I could got out and do the weekly shop without worrying.

We returned home ten minutes before four and unpacked and made a cuppa and then settled down to watch some of the games whilst waiting. Four came and went as did five, six, seven, eight and nine. At quarter to ten we got a call from a very apologetic delivery driver. His van had broken down and he was still at least two hours away so could he deliver between midnight and one. Absolutely not said Peter. Delivery driver sounded very relieved when I said that it was too late and happily arranged to deliver today. 'You'll have it before lunch time' he promised. Well everyone has a different perception of 'lunch time' and mine is around half past twelve, however I am going to give him the benefit of the doubt and wait until two before firing off another email. I think that is more than fair.

So I went to bed frustrated once again and praying that I get the call soon so I don't have to deal with this situation anymore. Yes I know it is a ridiculous reason to want a transplant but this is seriously getting to me now.

To distract myself I'm researching hotels for our break in September.

We always spend a few days away in September just to get away from work, family and hospitals. Of course we can't get away from my health problems but we do our best to put them aside and enjoy ourselves. Yes I'm still tied to the phone but that is a small price to pay for relative freedom.

The hotel has to have few specifics. It must have disabled parking, it must have a lift or rooms on the ground floor. Last year, despite asking for a ground floor room, I was put on the first floor and the stairs nearly killed me. It also has to have a fridge, this is even more important now that I'll be taking ready made meds with me instead of making them up as I need them. And finally it needs aircon. I've found the Veveltri is even more difficult to cope with, as far as raised body temperature, than Flolan. I no longer have flushes, I'm permanently hot and night time can be difficult if I don't have good air flow.

This year we are looking at a visit to York. This is one place I have been before but it was pre children so I can't remember much. I also remember that we only stopped for a day whilst on our way somewhere else so didn't get to see or do much.

So far the hotels are a very mixed bunch. Some have no disabled facilities at all, which I think is a bit dubious, some do but you have to pay a premium for them, which I think is very unfair, and one tried to charge me £18 a day for a guaranteed disabled parking space. So far I've got a choice of three possibles but they are all quite a way out of the city but if having to drive in everyday means a good stay then that's what it will have to be.

Today is going to be a hot one but mercifully it will start to cool down tomorrow. Apparently it is going to be short hiatus but for me a much welcomed one. I know I sound like a spoil sport but if you were in my position you'd be moaning too.

To help me cope this afternoon I'm going to sit out on the decking in the shade with a good book and my music player and just cut myself off for a couple of hours. I have nothing else to do, I did all the chores yesterday, except the ironing, which I did early this morning while it was still cool. I think this is going to be my new routine even in the winter as it means I have almost two whole days of 'me' time.

Right better get on with booking my break. Once it's done I will have something else to look forward to. It is really important to have goals, it takes my mind off everything else I have to deal with, well for a few minutes at least. More tomorrow.