Make more of May - a quick life update

May is one of those months that everybody likes.  In May the weather takes a definite turn towards Summer, plants and flowers start growing, BBQs are dusted off, people spend more time outdoors and soak up a bit of well-earned sunshine and warmth.

I thought I'd take the opportunity to give a brief update on what's going on with me, and where life is currently going, especially for those of you that were concerned by my post back in February, where I shared that there were problems with the health of my kidneys being investigated, but I've not mentioned them since!

Let's do the health thing first.  At the kidney biopsy in February I was told that I would hear the results at my  next appointment in three weeks time, unless the results were urgent.  I got a phone-call from the Renal specialist three days later.  It turns out I have a type of Vasculitis called microscopic polyangiitis.  Vasulitis is where the immune system decides to start attacking the blood vessels.  There are lots of different varieties, and microscopic polyangiitis involves the blood vessels in the kidneys, and occasionally the lungs.  So my immune system had started attacking my kidneys, which were inflamed.  They wanted to start treatment right away.  The treatment involves starting on a hefty whack of steroids, which they taper down quite quickly because of the side-effects, and also giving a low-dose chemotherapy type drug infusion every three weeks for ten cycles.  Both of these treatments can have lots of side-effects so they keep a close eye on you, and also give lots of other drugs to try to reduce the side-effects as much as possible.  It means that I trek up to Birmingham every three weeks for the infusion, and again in between for a clinic visit, and also have a blood test here in Hereford mid-cycle.  Its a bit of a long-term illness - it should be in remission by the end of the ten cycles in the Summer, after which the treatment reduces to a maintenance dose.  I'm not sure how long that goes on for, but I think they monitor things and making sure there are no relapses over a couple of years and then gradually try withdrawing the treatment.  I've now had four treatments with the cyclophosphomide infusion, and am due my fifth on Tuesday, and the steroid dose has been reduced from 60mg per day to 20mg over the course of the treatment so far.  

I have to say there have been moments where the whole thing has been a bit overwhelming.  I mean, I'm 37 and previously healthy, reluctant even to take paracetamol most of the time.  Then suddenly I have this long-term illness and am chucking back so many tablets that I think I'm rattling.  Having seen some of the other folks at the clinics and in the infusion suite though, I think I've had it pretty easy.  First of all, thanks to the vigilance of my optician and the competence of the doctors, my illness was picked up and diagnosed very quickly.  I had already seen the specialist before I even felt unwell!  I'm also getting off fairly lightly with the treatments.  I get the impression that others can react pretty badly to it, or get many more side-effects.  I feel a little fuzzy, shaky and very tired the evening and next day after a cyclo infusion, and am getting other side-effects, but nothing serious, and am still managing to work full time.  My side-effects have included sleepless nights - I think that's the steroids.  I've been waking very early in the morning (like between 2 and 4am) and have often been up by 4.30am - also leading to me being pretty grumpy by the time I pick the children up from school at 5.30pm.  Luckily as the steroid dose has been reduced, this seems to be an improving situation.  I get puffy legs as the day wears on, the skin on my hands has gone papery and thin, I've got spotty, I've got a fat face, I've had bouts of nausea (better now, as they changed one of the drugs) and I have AN ENORMOUS APPETITE!  Seriously, I'm hungry all the time.  I lost quite a bit of weight in the few weeks before the biopsy, but have now put it all back on.  One of my  missions for May (and June, July, August etc), is now that the steroid dose is coming down, I've really got to get in control of my eating and try to shift some of the weight back off.  I can't do much about the vasculitis, but  I can make sure that the rest of my lifestyle is healthy.

my fat face today out walking the dog.

Family

My family is lovely.  They've had a bit of a hard time over the last few months, as I've been tired and grumpy.  To be honest, Bug doesn't seem to notice much of the time, but  then she surprises me by making me a card asking "ar you ok?".  C gets more worried, and when he can see that I'm tired or feeling unwell, gives me big cuddles.  I've been trying my best to make sure the house is still clean and tidy, the dog is walked, we have clean clothes and food at the right times, but there have been times when all I've managed to do when I get home from work is curl up on the sofa, and leave it all to Hubby.  Despite my mood swings and fluctuating energy levels, he has kept going with everything.  The whole thing does seem to have sparked a bit of "living for the moment", and we've fulfilled a couple of dreams by going on holiday to Venice, and ordering a brand-new VW Camper.  Hopefully we'll keep on with that - I like that we're getting on with living right now. 

We like Herefordshire, it's a beautiful place to live.  We're still hoping to sell the house in Scotland (sooner rather than later) but currently have tenants in there and are renting down here.  We can't wait to finally buy a house here and make it into our own home - because we know we aren't planning to stay here we aren't doing anything that would need undoing at the end of the tenancy, it feels very temporary.  I'm pretty sure we'll be in this place at least until the end of the Summer, so another thing to do in May will be to get some veggies and flowers in the garden.  Last year I got a few tubs and pots around the place, and I hope to make use of some pallets and extend that this year, allowing space for the children to have their own planting area too if possible.  We can either take them with us or bin them when we finally do move.

Work - I'm really enjoying being back at work, though obviously with all the trips to doctors and hospital, blood tests and feeling unwell or tired it hasn't all been easy.  I'm currently covering a maternity leave at a tiny little school in rural Herefordshire teaching Reception Class.  It was a challenging start, as there were two classes sharing one classroom, which was slightly chaotic to say the least!  Things are now looking much better, as I have a huge classroom, which is beginning to look more like the way a Reception Classroom is supposed to look (though getting resources ordered via our "umbrella" school is unbelievably slow - we are definitely the poor dependent!).  In professional terms I am really enjoying the challenge of teaching a different age-range.  The LEA are coming in to moderate my EYFS judgements on the little lovelies at the end of May, and while I'm hoping that I'll learn from the experience, I'm also hoping that it won't be too much of a learning curve and that they'll agree with most of my judgements.  I'm feeling pretty good because I've already done a lot of the evidence gathering and preparation work ready for that, and by doing so, it will also put me ahead of the game when it comes to writing EYFS Profiles and school reports towards the end of term.

In the meantime, I'm also applying for jobs for September.  Watch this space to see how I get on with that!  

Everything else - writing, crafts, model railway, Scouting, making stuff - It will come as no surprise having read all the above, that my writing, my crafting, the model railway (which came out of storage a couple of months ago), and all the other projects with which I like to fill my life, have taken a definite back seat over the last few months.  I am still required to make things by my demanding daughter, and do my best to fulfil her requests, but am also trying to teach her that with many demands on my time, I need to prioritise, and making a cat costume is lower on the priority list than filling in a job application!  I hope to get back to all these things of course, but just now getting fit and healthy, spending time with the family and keeping up at work are my three top priorities - in that order.

What are you up to in your life at the moment?  How are you getting on with your life dreams and priorities?

The Beautiful City of Venice (and taking children on a city-break)

We've just come back from our first European city-break with the children - to the gorgeous city of Venice.

Venice is breathtaking.  I'll tell you a little bit about the holiday, and throw in the things that we've discovered about travelling with a 5 and 6 year-old as I go along.

While C had been on an aeroplane before, aged about a year old, from Exeter to Edinburgh, this was the first plane trip that either would know about.  The airport and the aeroplane was every bit as exciting for them as the rest of the holiday.  We talked them through - several times - how the airport works and which bags would stay  with us and which go in the hold.  C got quite worried about having anything metal on his person or in his bag, so Hubby showed him the list of permitted and not-permitted items on the internet.  They packed their bags of things for the journey well in advance.  Despite my warnings about lugging a heavy bag around, C insisted on filling his with large hard-backed books about space.  Later, when he was beginning to tire of carrying the bag up and down steps and bridges in Venice, I made sure he kept hold of it!

We drove down to Gatwick on the Sunday afternoon and stayed in a nearby hotel, enjoying a meal at a local Harvester restaurant.  The hotel wasn't strictly necessary, but saved an unreasonably early morning drive, and meant that we were in plenty of time for the flight.  We used Purple Parking, who offer a hotel/parking deal and lay on a bus to the terminal.  This was, of course, all part of the adventure for the children.

Once through security, we made straight for the indoor children's play area.  One of us stayed and loosely supervised the children (did my puzzles), while the other went and browsed in the shops.

On the plane Hubby had booked two pairs of seats by the window, so we took a child each.  They had the window seat and we showed them all the exciting runway goings-on.  As we took off I handed out the sucking sweets - turns out not to be a good idea for Bug.  She was so busy looking about and chatting that she nearly choked on her sweet several times and had me worrying that we'd be turning the plane around and getting a paramedic!

On arrival at Marco Polo airport we got cash and bought our boat tickets across to Venice.  The Alilaguna boat-bus was quite low in the water and the windows covered in spray, but we still got a great view as we motored up the Grand Canal and disembarked just near the famous Rialto Bridge.  From there it was a short step to the hotel.  We actually weren't staying in the hotel (Ai Riali), but in a separate apartment.  Great tip for families by the way:  It didn't cost more than a room in the hotel, but our apartment (just behind St Mark's Square) had it's own kitchen, 2 bathrooms, sitting room and 2 bedrooms.  It meant that we could eat when we were hungry, the children had space to play, and we weren't stuck in the same room as them being quiet and dark while they went to bed early.  A porter from the hotel carried our bag and led the way to the apartment.  I nipped out to find a supermarket (marked on the map for me by the hotel receptionist) to pick up essential supplies.  I felt a bit like Audrey Hepburn as I trip-trapped along through back alleys and over little bridges.  I didn't even need the map on the way back!  I'm not sure Audrey Hepburn has ever been to Venice, but it felt like the kind of place that Holly Golightly would be very much at home.

Most days we breakfasted in the apartment, then headed out for the day.  We'd have a full hot meal at lunchtime, and then a lighter tea back at the apartment.  That's another tip for parents with children - Continental Europeans tend to eat later, and many restaurants don't start serving their evening meal until 6.30 or 7pm.  If your children need to eat earlier than this, then consider having your main meal at lunchtime, usually served between 12 and 2.
We bought a 48 hour tourist pass for the Vaporetto (boat bus) which takes you just about everywhere, and used that to space out the walking and give little legs a rest.  We also did one trip in a taxi boat, which felt very decadent (but was considerably cheaper than a gondola trip!).

It's worth heading to the toilet whenever you are in a cafe/restaurant or museum, because public toilets cost 1-1.5 Euros per person.  Most of the ones we visited were decent toilets, though I did experience one very dodgy one!

We visited the Peggy Guggenheim Collection.  It's full of contemporary art which allowed the children to interpret it in whatever way worked for them.  Bug was delighted to find two Picasso paintings, as she's learned about him at school.  We also visited a couple of beautiful churches to see the Tintorettos and other beautiful Renaissance Art.  The children looked at the pictures and statues and tried to identify Bible stories that they had heard.  We climbed two bell towers, with views across to one another, as well as across the whole of Venice: San Marco is the tallest campanile in Venice, in St Marc's square and waking us at 6 each morning; San Georgio Maggiore is on another island just opposite St Marc's.  We also paid a visit to two museums: the Natural History Museum of Venice and the Murano Glass museum.  The displays on evolution and adaptation at the Natural History Museum are superbly curated, but we were less keen on the "collections" of dead animals, including a beautiful gorilla killed as recently as the 1920s.  The Glass Museum had a video at the beginning showing some of the techniques still in use today to make the different types of glassware, and that brought the collection of glass over the last two and a half millennia to life a bit, but the children definitely needed a run around in the garden afterwards.

In between these visits we just explored the city on foot and vaporetto, stopping for ice-cream, lunches, coffees and shopping whenever we needed, heading back to the airport on Friday afternoon.

They say that Venice is a city of romance.  It's certainly romantic, and we saw plenty of evidence of honeymooning couples and weddings.  The setting is stunning; the architecture and history fascinating; the buildings all showing signs of faded glory in various stages of restoration; the canals and the life people live around them and the multitude of tourists are intriguing.  It's also a great place to go as a family - small enough that you can get around the whole place very easily, big enough that there's plenty to see and do, enough interest with transport alone to keep small children happy, the pace of everything slowed down by the absence of cars.  We had a wonderful time and I would definitely recommend it.

None of the links or mentions on here are in any way affiliated to me, nor am I getting paid in any way to write or endorse any products, attractions or accommodation.  All opinions are entirely my own.