Burning the candle at both ends

Update from latest blood test and visit to doctor: am recovering nicely from the cough & cold I’ve had for the last 10 days or so (yay!) but the inflammation markers from my blood test have leapt sky-high into the ‘red zone’ again. Doc reckons it was because the blood test was done while I was still quite sick, so she has said not to worry for the time being ~ especially as I haven’t had any major joint problems. So my daily steroid dose will stay the same (we had been slowly reducing it) for the moment, and we’ll see what happens with my next blood test in about 3 weeks’ time.

We moved into our house just about two weeks ago, but it feels oddly like we’ve been here forever. We’re not sure why that is, but I like to think it’s a good sign, that the house is so ‘us’ that it has felt instantly like home. The move itself went pretty smoothly (two men and their van turned up as arranged and because it took far less time to shift our stuff over, they gave us a 35% discount!) but I’m not sure how long it will actually take me to recover physically from it.

Apart from crushing fatigue, it is my hands which have been most affected; probably because there’s been so much unpacking, shifting things around and sorting out to do (and still not completely finished, either!). My right hand in particular feels like it has been electrocuted… burning pain, swelling, a weird and constant tingling, and a throbbing, hyper-sensitive index finger and thumb. The joint immediately below the index finger feels like a swollen, sore knot; you can’t really tell anything is amiss by looking at the top of my hand, but gently pressing my hand against a flat surface is quite a shock ~ that joint is actually as big as a marble on the palm-side.

Which means I’ve been getting lots of practise using my left hand instead… I managed to even slice mushrooms the other day without cutting off any of my fingers, so am well chuffed. AND I managed to wash and dry my hair again for the first time in about four days yesterday, when shoulders, arms and hands relented long enough for me to shampoo, rinse, brush and blow-dry before pretty much shutting down and sulking.

I’ve started taking hemp seed oil capsules as well as the collagen, glucosamine chondroitin and omega-3 super capsules (and all the regular daily meds) so hopefully that will have a positive overall effect. And I’ve even started eating fresh fruit more regularly… anyone who knows me will know what aberrant behaviour this is for me because I pretty much hate fruit. Vegetables I love. Fruit I can’t be @rsed with.

As I write this, on the eve of Christmas eve, the wind is howling outside, it is pitch black (and has been since 4pm, gotta love these Britisher winters) and raining. I have a million more things to do for work and home and Christmas and insurance paperwork and suchlike, but I am feeling at peace with the world.

Merry Christmas all, and all the best for a good 2014.

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Counting blessings

Cut down to 4mg daily Pred for the whole of last week, and 3.5mg this week. Right hand has turned into painful, gnarled claw hand, and my shoulders are killing me. Amusingly, what I thought all this time was a creaky staircase here at home turns out to be creaky knees, fizzing and popping gently with every step up. I guess I didn’t realise because oddly (and thankfully), there has been no accompanying pain. Not for going upstairs; coming downstairs is a different story.

But on the upside, learning to be ambidextrous has cheered me up, as I am surprisingly okay with using my left hand where my right hand won’t do any more ~ mostly for household chores, though. Trying to do up jeans or my bra, or to put on socks or boots with a mostly useless right arm/hand is a bizarre, frustrating experience, but my helplessness often makes me burst out laughing, still.

BUT: still mobile, still able to do pretty much everything I need to do, new ‘puter glasses making working at the ‘puter a joy, stiff cracky neck but am used to the level of discomfort now so it doesn’t really bother me, a care package sent by my mum all the way from Malaysia included a wonderful selection of Brahim’s curry pastes (yum), my girls are lovely, the cats are bonkers, Mr Chan cheers me up, Christmas is on the way and we’re moving into our ‘new’ house next week 🙂

Adventures in Wymondhamland

England is proving to be a discombobulating combination of weird and wonderful, of surprise and delight one moment and frothing rage and disbelief the next. Mostly it’s been good; good in a way that I never encountered in HK ~ like this morning, for example. I’d placed an order with an online retailer (planning ahead for Christmas!) and of the four items I received, there was one wrong. The serial code on the order and the item packaging matched, but the actual item was incorrect. So I emailed their Customer Care via the website but pretty much resigned myself to being shunned a la iTunes, which has so far ignored six polite email requests I have sent asking to be reimbursed of nearly £40 for a faulty Tomtom app I purchased three months ago.

So imagine my surprise (and delight) when I got a call this morning from a lovely lady apologising for the error, assuring me they still had the item I actually wanted in stock and would express courier it to me immediately, and that as a token of their appreciation for my kind understanding, I could keep the extra item as a gift.

I know, I know what you’re thinking: “Eh?”

It’s a true story and not an uncommon one here, as I am finding out. HK prides itself on customer care and customer service, but I have never experienced the kind of polite, genuine grace there that I frequently encounter here, whether from shop assistants or postmen or contractors (all of whom have also been a good laugh) or whoever else.

But then there are the goodly folk of Wymondhamland. My immediate neighbours are extremely nice, friendly and helpful sorts, but bloody hell, the rest of the population of Whispering Oaks must have all graduated from the Driving School of Complete & Utter F*ckwit B@stards. The streets around the houses are narrow, do not have any markings on them, and there are many twisty-turny blind corners and no road mirrors to help you see if some fricking lunatic has just pulled out of his drive at 40mph without bothering to check if his path is clear. Add to that the bizarre situation in which people eschew their private garages and off-street parking (at least one of each for each home) to park straddling the kerb on both sides AND literally on the corners… wtf.

Went to see my GP (a new one) yesterday. She was lovely, taking lots of time to go through my medical records and talk about my treatments etc ~ I told her I was finding it a bit odd to only have seen the RA specialist once since arriving, and to be told at that appointment there there was no need to return until July 2014 (I kid you not). In HK, you see, I saw my rheumy every 4-6 weeks i.e. after each batch of blood tests. Of course, his enthusiasm to see me could also have been down to the HK$1,600 consultation fee he pocketed for each visit, ha ha.

Anyhoo. Turns out the UK rheumy had sent a report to my GP’s surgery after my September appointment, but no one had followed up. The rheumy advised that my steroid dosage could be cut back to 2.5mg a day (my GP and I were both a bit startled by this because it’s a big drop to make so suddenly, with no recommendation for a staggered easing back of the dosage), and that I need to have a baseline opthalmology test because of the Plaquenil.

So while I was p*ssed off that I could have been cutting back on the Prednisolone all this time, it was a relief to know that my case is finally in the hands of a GP who seems to be eminently capable and interested. We’re tapering off the Pred from 5mg to 4mg a day for the next few weeks (until my next appointment), and if I’m tolerating the change well, she will cut it back further to 3mg.

Fingers crossed that once the Pred is cut back, I can finally start shedding weight (or at least stop piling on more). Nice GP lady says the steroids not only cause major water retention, they also trigger the body to store fat. Everything I’ve read online from other RA sufferers taking Pred all points to massive weight gain in every instance ~ in my case, I’ve put on an eye-watering three stone plus in the last 12 months (that’s 42lbs+ or around 20kg+) with a subsequent spike in my triglycerides (not good).

Amusingly and largely by coincidence, I received a letter via the clinic inviting me to take part in a weight-loss study they’re doing ~ if I qualify and depending on which criteria I match, they could well sponsor me to join WeightWatchers for the next 12 months. I think it’s brilliant; please god let it be like Fat Fighters and Marjorie Dawes.

A step backwards

Taking stock can be a good thing; I frequently stop to count my (many) blessings and be thankful for them. In the past few days, though, the stock-take has been a bit of a downer. I’ve always loved messing about with painting and fixing things up etc (one of my greatest joys with Cheeky Monkey Theatre Co was making the costumes, props, backdrops and so on, although Amber wil insist that this was only because I got to spray-paint pretty much everything that wasn’t nailed down), so the prospect of doing up my new house was exciting.

In the past, I’d had so much fun doing decorative wall treatments like sponging, stencilling, rag-rolling and the like, and had been looking forward to getting stuck in on re-painting the kitchen (originally hideous magnolia coupled with crappy lights and a black countertop = very dingy space), the entrance hallway (they painted it mauve! Why?!) and the various bedrooms and study (all that ghastly job-lot of magnolia).

We pored over paint catalogues, made our choices, went to Homebase, browsed the aisles, picked our paints, got brushes and rollers and whatever else, and arrived back at the house in a froth of excitement. Well okay, Izzy and I were a-froth; David was sensibly less so. We started on the kitchen and even before the first coat on the first wall was complete, I had a sinking feeling that I wasn’t going to be able to go on. Yesterday, we went back again to continue and that was it. Not even 20 minutes later, with exhaustion making me stumble and stagger, the sentence was pronounced. Mission: definitely impossible.

I don’t have the strength in my arms to wield a roller, or in my hands to grip a paintbrush. My right knee is swollen and stiff from repeated kneeling and standing; my right shoulder has pretty much seized up so even sleeping is painful, never mind getting dressed this morning.

So, with sinking heart and sick frustration, I concede defeat and acknowledge that we will have to pay someone to do the job for us.

Strange lights in the sky

Time for an update: five weeks ago today, I arrived in England from Hong Kong for the start of a whole new chapter in my life. Everything still feels odd and unsettled, as if I’m just on an extended trip ‘away’.

The reality is that it has been a long, exhausting process to get here, some of which I’ve documented a couple of blogs ago. Still in a holding pattern waiting for touch-down are my shipment from HK (all my stuff!), the exchange of contracts on the house I’m hoping to buy, and seeing a rheumatologist here.

So, in order: the shipment should have already arrived at port and is going through whatever it needs to go through for HMS Customs to clear it for delivery to me. That should be fun, too, as the road where I’m currently renting a house is not so much a road as it is a pretty, pink brick-paved drive. How a gigantic container lorry is going to squeeze its way down here will be an interesting thing to behold.

The house I’m hoping to buy is just around the corner from where I am now. It’s a new build — about 5-6 years old — and stands three storeys tall. Yes, that’s right: THREE.

I still laugh when I think about it, although the possibility that I may have to install not one but two  stairlifts if my knees give out usually wipes the grin off my face. It’s been about eight weeks since my offer was accepted; the purchase process for property here moves  painfully slowly. According to my solicitor, they are now waiting for the final search (?) to come in, any queries to be put to the vendor’s solicitors and then, all being well, it’s time to hand over the dosh and sign contracts.

The rheumy: I went to see my local GP just over a week ago, and he put in a referral for me to the Norfolk & Norwich University Hospital. I was told that on the NHS (National Health Service), I would have to wait between 6-8 weeks before I could hope to get an appointment with a rheumatology specialist. So I filled in the requisite forms, provided proof of my identity and eligibility for free treatment under the NHS, and waited. This morning, I got a call: a cancellation means I now get to see a rheumy on Monday!

(And in the meantime, the local GP office has arranged a repeat prescription of my meds.)

Update 13/9/13:  in HK, consultation fee with rheumy specialist was HK$1,600 a pop. Meds on top of that averaged around HK$4,500 for 4-6 weeks’ supply, including the mandatory blood tests… Meanwhile, here in Blighty, rheumy specialist consultation on Monday (6 weeks sooner than I was warned I would have to wait) and blood tests will cost nowt. And on prepayment scheme for prescriptions, my meds will cost less than 20 quid for 8 weeks’ supply. Blimey.

Some things work really easily and painlessly here. Setting up internet access was a breeze, and all done via email, pretty much. I applied, they approved, and posted the modem/receiver to the house (I hadn’t arrived in the UK when it was delivered, so the postman tucked it in a corner by the back door, where it remain safe and untouched for several weeks!) and a friend of a friend came by to help set it up and ensure that I didn’t plug things into the wrong places.

He also set up our blissfully beautiful, easy and very clever ‘smart TV’ for us: high-def, internet access (so we can get online movie channels, BBC iPlayer etc), and more Freeview channels than we’ll ever watch. Take that, NowTV!

But life likes to deal out a sharp smack around the back of the head every now and then, just to make sure we’re not coasting along thinking how clever we are. I got my head-slap with the purchase of a previously-owned car: all seemed well, the timing was perfect and I would be able to collect the car at the same time as I had to return the hire car.

Then, two days AFTER the dealer had banked my cheque, I got a call: the previous owner had put personalised number plates on the car and the DVLA (Driver & Vehicle Licensing Agency) would have to re-issue the vehicle’s “log book” (don’t ask me) with the original number plates before it could be delivered to me. How long would it take, I enquired politely, pointing out that I was due to return the hire car in three days.

“Up to two weeks, maybe longer,” they said.

That was when I had my first “wtf you’re having a f*cking laugh” moment since leaving HK. Long story short: between the DVLA, the car dealer and the car hire company, I was royally screwed and the whole sorry mess ended up costing me nearly 900 quid extra in car hire fees as I waited for a bunch of blokes to sort out a mess that was none of my doing.

I finally collected the car (after a fair amount of tears, snot and anger) only to discover the next day that there were two big chips in the windscreen, which weren’t there when I viewed and bought it — but which the car dealer refused to fix because “it passed the MOT with those chips so they are not deemed a problem”.

Cue second “wtf” moment.

Thank god for fully comprehensive insurance with windscreen cover, is all I can say. A lovely man from Autoglass came out to the house and replaced the entire windscreen in less than an hour.

(The car dealer has offered no compensation at all, not for the inconvenience, or the windscreen cost, or nearly a grand in unplanned car hire…. I am wondering if it’s time for a class-A “Hong Kong gweipor hissy fit”.)

But still, I count my blessings: my youngest is loving her new school, my eldest is loving being back in London after nearly dying of boredom here in Wymondham, the cats have recovered from the ordeal of their journey here and are eating again (and getting very excited about “Outside”), Mr Chan has arrived (albeit struck low by the dreaded, deadly Manflu since his arrival), work is progressing nicely now I’ve settled down into a proper routine, my BFF and her family have been blessed rocks of support and help… there are many, many more things I am thankful for.

Oh, apart from a constant series of niggling flares over the past two weeks or so: today, my  left index finger and joint are inflamed, hot, and swollen like a balloon. Still, at least my knees haven’t given out, which is handy now that there is now Upstairs and Downstairs.

Oh, and a quick reference to the title of this blog post: last Saturday (7 September 2013), my other half and I spotted what we thought was the tail-light of an airplane in the night sky. It was very, very high up among the stars, but it wasn’t until it suddenly paused, then moved abruptly and erratically in a zigzag motion that it dawned on us that it might be something else altogether… Which is when it disappeared, justlikethat.

The more things change

Right: seeing as there seem to be quite a few people who haven’t caught up with my momentous life changes, I thought I’d attempt a handy cut-out-and-keep version:

  • YES I have left HK, after 27 weird and wonderful years there
  • YES I am now living in Norfolk, in a tiny village outside Norwich
  • YES I am still working for Perspective magazine (woot!)
  • YES I am now a published author *still stunned*
  • NO I am not JK Rowling-rich (nor will this book make me JK Rowling-rich; not enough wizards in it)
  • YES My book is available from Amazon
  • YES It is only a digital/e-version and will not appear in print (as yet, but who knows, eh)
  • YES I have a second one in the works and almost completed
  • YES I have a third one in the works and far from completion

Other notes of import: my girls are with me, my cats are with me, I am renting a HOUSE which has A GARDEN and FOUR BEDROOMS for about 50% of what I was paying in HK for a shoebox of barely 500 sq ft.

In short: my new life is totally and utterly, delightfully discombobulating. Which is posh for “most of the time I don’t know if I’m coming or going, but I’m okay with that”.

Dancing as fast as I can

I’m not sure how I’m finding time to do this; blame Catholic guilt and the Protestant work ethic and classic distractionary (is that a word?) tactics. Also, it’s been months since my last update and a chat with a good friend a couple of nights ago at my farewell drinks (see how casually I slipped that in there?) has prompted me to make the effort.

(Plus my eldest has just started her own blog, which is brilliant, and has inspired me.)

Short version is that the last couple of months has been a blinding blur of Things That Must Be Done because, after 27 insane, wonderful, bizarre, crazy, frustrating, mad years in Hong Kong, I am finally upping sticks and moving… to Wymondham, a tiny little village in the countryside on the outskirts of Norwich, England.

“Where the hell is that?” I hear you ask. Wiki handily describes it thusly:

Wymondham (pronounced ‘Windham’) is an historic market town and civil parish in the English county of Norfolk. It lies 9.5 miles (15 km) to the south west of the city of Norwich, on the A11 road from Norwich to London. Wymondham’s most famous inhabitant was Robert Kett (or Ket), who led a rebellion in 1549 of peasants and small farmers in protest at the enclosure of common land. He took a force of almost unarmed men and fought for and held the City of Norwich for six weeks until defeated by the King’s forces. He was hanged from Norwich Castle for his troubles.

Then there was the Great Fire in 1615 and since then, pretty much nothing has happened… until now, presumably, when August 2013 heralds the arrival of the Clan Miao-Chan (and cats).

The ‘why’ of Wymondham in the course of my life is simple: my youngest has got herself a place at a lovely, quintessentially English school in the area to do her A levels. The ‘how’ is far less picturesque and much more complex and exhausting, as I tackle moving companies, pet transport companies, bank accounts, mortgage applications, UK estate agents, landlords who will (or, as more often not) accept cats in their property, work, internet connections, furniture deliveries, selling off whatever I am not shipping over, juggling 1,001 different things and demands and people and the Inland Revenue and MPF claims and utilities companies *argh*

And now I’ve completely lost track of where I was heading with all that.

Anyhoo. Have seen my rheumy a couple of times in the last few months and all things are much of a muchness. Funny thing about all the meds is that often, I am completely unaware that I am in the middle of a flare until I get claw-hand, my toes start hurting, my shoulder seizes up or my knee starts ‘cracking’ every time I move. The knee thing puzzled me until I finally worked out that what must be happening is that the joint is so inflamed that the patella (kneecap) literally gets pushed out of alignment and the cracking is my poor old knee trying desperately to get things back where they should be.

The hair loss seems to have stopped, my Wednesday “post-Big-Pill-Night-Tuesdays” nausea seems to have subsided, but I have noticed problems with my vision. Is it because of the Plaquenil? Or the aging process as my eyes switch from short-sightedness to long-sightedness? As much as my glasses seem increasingly inadequate to cope with the massive demands now being placed on them, I can’t keep changing them at the drop of a hat… not at HK$3,000 a pop each time.

I am hoping that once I get to Blighty, I can find myself a rheumy who’s willing to consider alternative treatments; in other words, those which don’t involve the massive chemical load that I am currently putting on my systems. I am particularly interested in finding out more about cannabinoids, which seem, by all accounts, a miracle treatment for many progressive and chronic diseases.

Between now and then, I am flat out like a lizard drinking (a fantastic saying which I believe originates from that most splendid country, Australia) trying to keep up with all the things which Must Be Done. But as I keep reminding myself, by 7 August 2013, everything that Must Be Done will Have To Have Been Done, so that is the light at the end of the tunnel on which I am setting my sights.